La Donna's Blog

2009-07-16T21:42:00.000-07:00

Well, I said I would let you all know about today.We went to see Dr. Page and I am not a candidate for any trials because of the renal failure. I would be dismissed from any trial. If the Velcade trials are a success and Dr. Page feels they will be for WM, then I might be a candidate to take it under very controlled conditions. I remembered the Velcade exacerbates Peripheral Neuropathy and he said that it does. Of course I have PN and that is another reason to be careful. He said I am very stable at the time and as long as we can keep it that way, I can lead a fairly normal life. He said I have too many problems to think about being in a trial and I also asked him about a kidney transplant. I did not think I could ever be a candidate for one and he said that I am not. Here again because of too many problems. My blood counts are all too low to ever undergo surgery. My Hgb, white cell count and platelets are off the low end of the scale and any surgery would put too much pressure on my system and complications and infections would be a huge factor. He did not feel I would survive the surgery and if I did, the aftermath would be worse than dealing with what I have now. I respect Dr. Page and have always ask him for the truth and not to sugarcoat anything. He is a class guy and I will always do what he suggests. He feels we are on a good path at the time and we need to stay with what we are doing now. That is fine with me and I enjoy the good days and there are many more good days than bad.

2009-07-14T21:20:00.001-07:00

I had to go to the hospital today for two units of blood, it has been two months since I have needed blood and that is certainly better than weekly like I had to for over three years after my stem cell transplant. I have not required platelets for over a year. They are remaining low (about 25,00) but they are remaining stable.

2009-07-13T17:23:00.001-07:00

I was unable to see Dr. Page today but have an appointment Thursday morning. Another bit of information: Dr. Kumar said there has been moderate success with some treatments to rid the organs of some amyloid deposits. He said not all but some and not all types or Amyloidosis or in all organs. This is advancement because at first I was told once the deposits were there, they stayed. It is encouraging to hear of progress being made from the research being done on Amyloidosis.

2009-07-12T09:57:00.001-07:00

I realize I have not written in my blog for a year and will try to do better. We went to a meeting of the Amyloidosis Support Group in Dallas and I got some interesting news. The doctor from Mayo/Rochester, Dr. Shaji Kumar, was talking about the progress made lately in Amyloidosis research. He also works with Waldenstrom patients...go figure. He was talking about a treatment that is not for everyone with Amyloidosis but it is helping slow down the progress of the diseases of the combination of WM and Amy. It is more against the Waldenstrom’s. I asked him since I have both am I a candidate for Velcade treatment and his reply was, "yes" so I am contacting my oncologist tomorrow for an appointment. I was to see him next Monday but if I can get in tomorrow, I want to see about this. This is the first hopeful sign I have had since the stem cell transplant and we all know that went less that perfect. It did bring my WM protein numbers down and that was a good thing but that was all it did and not what the doctors had hoped it would do. We will see, I am anxious to talk to Dr. Page. I may not have quoted Dr. Kumar word for word but he gave me hope that someday there will be a cure for Amyloidosis and that they are doing their best to keep patients alive and active until that day comes.

2008-06-18T23:50:00.000-07:00

Not much is different and I am continuing to function daily and enjoy much of my time. Arthur and I went to the Amyloidosis Support/Texas Area meeting last Saturday. Dr. Francis Buadi from Mayo/Rochester, Minnesota was the guest speaker. He is a specialist working with amyloidosis and was very interesting and informative. He gave us information about the research and testing taking place at Mayo and other institutions for amyloidosis. When I asked about my situation, he said none of the medications would be given to me because of my low blood/platelet numbers. I really knew that was probably the answer but thought I would ask anyway. I have so many problems that no one will chance testing on me. Some testing might be effective on me but it could make some of my other problems worse. So it is just stay the course.

2008-04-29T03:12:00.001-07:00

I cannot believe it has been so very long since I have written in my blog. Things went ok with the new catheter. It left me very bruised and sore but that has gone away and it is working quite well. I only have to get blood about every four or five weeks and that is not so bad. The Exjade (iron binder) is doing a good job of bringing my iron and ferritin numbers down and I am not even taking it at this time. I will start again if my numbers start to go back up.

I had to have a cyst taken off my right hand today so it is very sore. Thank goodness I am left-handed so I can do most things. They will send it off but it looked like it will be fine. The pain has returned so I am unable to stay in bed so thought I would get up and do a few things and hope I can rest later tonight. All-in-all things are going pretty well. Spring is here and our yards look wonderful and the weather is cool and beautiful. That will all change in a few weeks and summer will come to town.

2008-02-23T10:25:00.000-07:00

– My catheter will be replaced next Tuesday morning, the 26th. This will be my tenth catheter since 2000 so I should have the drill down. It does need to be replaced because it is showing signs of problems with protruding more and more.

2008-02-08T21:44:00.001-07:00

It seems there is always something new to deal with but we all have those days. Sunday evening we were preparing to go to a Super Bowl party and I put my glasses on the bed while I was dressing. Well, I promptly sat on them and broke one of the earpieces. It has been a busy week and I did not have time to do anything about it until Thursday. Went in and was checked and it had been long enough since I had my glasses replaced that it was necessary to change the lenses. Simple enough? He found evidence of cataracts in both eyes but the right eye is a bit worse. Went in today for further testing and will go back in next Friday for more testing. My vision is 20-30 and he said that is not bad but he wants to keep up with the progress of my eyes. He is testing for macro degeneration and other problems. He feels the glasses will be enough at this time to help with my vision. He also found my eyes are dry and prescribed drops in my eyes three times a day.

Arthur has the task of putting the drops in my eyes. I hate to have anything close to my eyes and I dread it each time. Arthur is patient and works well with me. He was teasing me because after all I have been through, that eye drops are such a problem for me.

We should get more information next Friday about the condition of my eyes and then will have to go back more often to see the progression. I do not get my new glasses until next Friday and I certainly miss having glasses. Thank goodness my sunshades are prescription and do help. So, I will just look like I am trying to be really cool by wearing my shades.

2007-12-27T04:44:00.000-07:00

I hope you all are having a wonderful Christmas season. I was “scolded” by a dear friend last evening for not being better about posting to my blog. I will be better in the coming year…I promise.

I am so glad I do not have to receive transfusions as often. I was receiving packed blood cells weekly for so very long but now I receive them about every four to five weeks. This is great because it means I do not have to go to the hospital and spend a day every week. I have not had platelets since June when I had to have my catheter changed. They are hovering around 19,000 to 25,000 that is so very low but is where mine seem to have leveled out. Dr. Page, my oncologist, told me we had to “rethink” my numbers and realize that these are ones I will have to live with. I feel quite good much of the time and able to go about life. The dialysis three times a week gets to be a burden but it is something that is just a fact of life for me.

Take care and have the best to each of you for the coming year.

2007-11-13T21:14:00.000-07:00

- Felt much better after my transfusion. Well, felt well until Monday I developed a sore throat and knew the cause. Went to Dr. Reeve knowing I had infected glands and throat. He confirmed I had acute lymphadenitis and he prescribed an antibiotic, Azithromycin Z. I am on my second day with it and feel much better. I think this is quite common at this time and "going around." I did not wait this time like I have before because I would always think I could get better on my own. That just does not happen for me without an antibiotic.

2007-11-07T17:45:00.000-07:00

When my Hgb was checked on Tuesday, it was 9.1 so I will go in tomorrow and receive two units of packed red blood cells. It has been six weeks since I received blood and this is the longest I have gone since my Stem Cell Transplant. My platelets were 22,000 and that is down from last time (27,000) but still within the range that Dr. Page will accept so I will not receive platelets. Proud to say it was June when I received my last platelets. It certainly gives me some freedom when I do not have to go to the hospital every week for transfusions. I am thankful for these little things. I remain tired much of the time but am thankful for each day and the blessings they present. I have a friend who always tells me that each day is a gift and that is why it is called the present.

2007-10-24T15:43:00.000-07:00

Had my blood checked today and was very happy with the numbers. My Hgb was 11.0 and I have not had blood in over a month. My platelets were 25,000 and I have not received platelets since my surgery to replace my ports in June. This is very exciting to me because it means I do not have to spend tomorrow in the hospital for transfusions. This also helps with the accumulation of iron because of the constant receiving of blood. So, it is a win-win situation. Good day for me so I wanted to share my good news.

2007-09-27T06:35:00.000-07:00

I had two units of blood on Tuesday and it had been almost five weeks since I had received blood. This is certainly better than weekly like it had been after the Stem Cell Transplant and was necessary for months afterwards. I have not received platelets since the ones I was given during the surgery to replace my port. They are hanging around 22,000 to 28,000 so Dr. Page wants to hold off unless they trend downward under 20,000. Not much has changed so still enjoying the good days.

2007-08-19T19:46:00.000-07:00

I had some friends who wanted to have lunch last Friday. Lee Ann came by to pick me up and we met at the Rock House in Aledo. It was a delicious lunch with good friends (Dianne, Lee Ann, Gay, Nita). At the end of the meal we were visiting and Dianne reached down and picked up a gift bag. She brought it to me and handed me a card. The card was lovely and then she handed me the gift from the bag. It was a plant identification tag with the name LaDonna's Courage on it. She is a daylily grower and hybridizes them. She has hybridized a new daylily (it took almost three years to do) and has registered it with the American Hemerocallis Society (Daylily) in my name. I was totally blown away. It is a beautiful mauve with a dark purple band above a golden yellow throat. She also gave me four of the plants and a picture of what it looks like. She is now getting ready to produce it for the market. What a legacy to have a flower named after you that will be here for generations to come. A. G. is working on scanning the picture of the daylily and when he has the time, he will get it on the blog site.

People have been so very kind to me. The Amyloidosis Support Group Organization named their first note cards LaDonna's Floral Set. It is overwhelming that I have such a wonderful support group of family and friends. Then the Texas Center for Blood Diseases and Cancer named me the Face of Courage for last year. I may have told you about that but it is all very humbling.

I am going in for blood checks tomorrow after dialysis. I am sure I will have to have transfusions on Tuesday but it has been close to a month since I have received red cells. My hemoglobin has dropped and I can feel I need the transfusions.

We are going to my brother and sister-in-laws’ 50th Anniversary this next weekend so I want to be in great shape. This is an exciting time and as soon as my Friday dialysis session is over, we will be heading that direction. They are very special people to me.

2007-08-13T16:36:00.000-07:00

Went in for blood work today the hemoglobin was 9.9 and the platelets were 26,000. The platelets went up another thousand and that is a very good thing. Should keep the hemoglobin at 10.00 or above but felt 9.9 was close enough so will not be getting blood this week. All I have to do is give myself three Neupogen shots because the white blood count was still too low. I am pretty excited anytime I do not have to spend the day in the hospital.

2007-08-01T16:16:00.000-07:00

Well the good news continues. I went in for CBC testing today and my hemoglobin was 11.3 and it has been three weeks since I have received blood. My platelets have gone up a little and they are 23,000. So, no hospital visit tomorrow. A day off to do something besides “medical things” is exciting to me. Not sure what this means but I hope the stem cells may become active although the doctors did not feel they would after a year had passed. It has been two and ½ years since the transplant. If not, it is at least good news for today.

2007-07-21T07:01:00.000-07:00

Received good news yesterday at dialysis on the hemoglobin numbers from Wednesday, the number was 11.5 and that was before dialysis. It is always lower before dialysis than after so it could have been as high as 11.7 after dialysis. This means I will not go in for blood testing this week. I will push it an extra week, as long as it stays above 10. I know this may not seem like much to some but believe me when I can have an extra day that is a big deal to me. This means I have Wednesday afternoon and Thursday off. I have not received platelets since my surgeries to receive the new catheter. They have actually gone up a little. Last week they were tested at 21,000 and for me that is great. Dr. Page will not recommend for me to receive them unless they go back down to around 13,000 or lower..

2007-07-15T07:15:00.000-07:00

Last week was a difficult one. I could not eat the evening meal, ate Tums like they were candy, became very ill at dialysis, had dreadful headaches and in general was very weak. Knowing I had stretched receiving blood to three weeks, it seemed that was probably the answer. When I was tested, the numbers were not as bad as they have been (9.1). I could tell there was something else and could not tell what it could be. As I look back now, I think I had another problem…still not sure what but am feeling much better. Since I have no immune system, it could have been almost anything. But whatever it was, it has passed and I am feeling a great deal better. I truly enjoy the good days I have.

2007-07-11T21:09:00.000-07:00

Had a rough few days. I thought it might be because my hemoglobin was low and had it tested today. It is low but not as bad as I was afraid it might be. It is 9.1 so I will go in tomorrow and get two units of packed red blood cells. My platelets are 22,000 and that is up from 21,000 three weeks ago. That does not sound like much to most people but to me any increase is wonderful. I am always glad when it does not go down but a slight rise is wonderful.

My white blood cell count is down to 2.1 so will give myself four shots of Neupogen. Not my favorite thing to do to give myself shots but it is better than having to go to the doctor four days in a row for them to do it. I received great instructions from the people at M. D. Anderson when I was there about giving myself a shot and there are worse things that can happen.

2007-07-07T07:41:00.000-07:00

– Not much going on, just more of the same. The areas where the surgeries to install and replace the ports have mostly healed. There are a few areas that are still tender but they are on the mend.

I had a great week planned with my family for the 4th and did not go in for blood. I knew my hemoglobin would drop and it has. I will go in Wednesday to be tested and probably go in Thursday for blood because my numbers were down to 8.7 and will only go lower. My platelets are remaining pretty good and even up a little. I feel pretty good but remain so very tired but that is to be expected with my problems.

2007-06-18T10:58:00.000-07:00

– I am healing where the catheter fiasco took place. Another stitch worked itself up and was taken out last week. It all feels so much better to have the stitches out. They said there might be more that will work their way out but I am healing quite well. Most things are about the same and I have to go in this week for blood.

2007-06-07T06:13:00.000-07:00

The other stitch was taken out Tuesday. That area should get better now and should start healing. I hope soon not to look like I have been in a "slasher" film. With the original port being taken out then the port that was installed in April having to be taken out and another one installed, I have a great deal of healing that needs to take place before that area will be comfortable again.

One good thing happened yesterday, my hemoglobin check showed the count was 10.2 and platelets 19,000 so I do not have to go to the hospital today for transfusions. Yea!!

2007-06-04T15:00:00.000-07:00

Things have really been up and down the last few weeks. The stitches from the last port installation have been giving me trouble. It is time for them to be removed because it has been three weeks since the last surgery. Dr. Shorie removed two of them this morning after dialysis but one is so deep I am going to their office in Fort Worth tomorrow at 1:00 to have it removed. He tried but said he will have to do too much "digging" around in the tissue to remove it so I need to go to a more sterile environment because of the risk of infection. There is still a great deal of scar tissue from the removal of the other two ports so it is taking time for all that area to heal. I think I will feel much better when all the stitches are removed.

2007-05-20T21:14:00.000-07:00

Things are about the same but I must say the area where they have been putting in the catheter and then replacing it within a month is very sore. It looks less than beautiful. I think it looks like I have been in a fight with a butcher knife and the knife won. It is still so very sore and I am sure it will take a good deal of time before it feels much better. I do not heal quickly and these incisions are quite deep and extensive. It itches and it is very difficult to sleep with the pain and discomfort. I am sure I will adjust to it because I did the last one.

Thank each of you for your continued support and good wishes.

2007-05-16T19:52:00.000-07:00

Had the procedure done today (changing the catheter that was put in last month. It was just not acceptable). I told them what had happened the last time during the procedure and how badly it hurt when I awoke and felt all the pain and I did not want to do that again. I was assured it would not happen and it did not. They always take blood and the lab lets them know the findings. They knew I was low on platelets but the lab must not have been prepared for the numbers. They ran the test and it showed 11,000; they ran it again because they thought it must have been a mistake…but no! That is just me because it was 11,000 the second time. I received two units of platelets before the surgery.

This catheter seems to be much like the first one I had and is lighter weight and I think will be much better. That area is so very sore because of all that has been done there in the last month. It is cut and bruised quite badly and again has large, deep stitches that will have to be removed in the future. I am taking Darvocet for the pain and it is helping but I am still hurting a good deal but it will soon be better. I still have the pressure bandage on it and will have it taken off and the area cleaned in the morning at dialysis. Since the surgery was today, I missed my regular dialysis day and will have to go Thursday and then again on Friday. I asked if I could just skip that day and was told no because it was too hard on my heart and kidneys. I am to be the first one on in the morning and have to be there no later than 5:00. That will work quite well because we are going to Comanche to see Alan in a school play on Thursday evening. Will have to make it a quick trip because I have to be back Friday morning for dialysis. Amazing what you will do for your grandkids and love every minute of it.

I will say I am glad this day is just about over. It was not one I was looking forward to but I made it through and will be fine.

2007-05-10T21:55:00.000-07:00

Heard from the dialysis center today and they had heard from Dr. Hudgens about the catheter. He wanted to do the change in the morning but I told him that was not possible. Our oldest grandson, Alan, has off Friday from school and is here for the long weekend and the college graduation is tomorrow evening and since Arthur is the Registrar, it is a busy time for him. They said the Tuesday and Thursday slots were full for a period of time and Dr. Shorie does not want to wait that long so I will go in Wednesday to have the procedure. I have many questions this time about the failure of the last one and want some answers before we start. Also, I want to let them know about me waking up and feeling the pain of the surgery and make it clear I want to be kept under the entire time. I know it was a mistake but it was a painful mistake.

2007-05-08T11:04:00.000-07:00

Dr. Shorie was at the dialysis center Monday morning and we talked about my new catheter. He is not impressed with it because it is so low and instead of forming a bow it goes up and comes down in a steep fashion (you can trace the route through my skin). It has been giving me some problems and he said it always would so he told the floor nurse to call and talk to the doctor about replacing it. That was certainly not what I wanted to hear but I do feel something needs to be done. The dialysis lines continue to jerk during the dialysis sessions and it is not natural. It is still very painful and they have not been able to remove the stitches because it seems to be taking so long to heal. I really dread what may take place about all this but whatever happens will be OK. I should know something about it all tomorrow (Wednesday) at dialysis.

2007-05-03T03:48:00.000-07:00

The visit to Dr. Rojas, the infectious disease doctor, went well. He reaffirmed what Dr. Shorie is doing about the steph. Continue with the Vancomycin for a total of four weeks from the time the catheter was replaced so that will be for 2½ more weeks. Then they will take another blood culture to see if it is all gone. He said usually the first two weeks of treatment would have been enough but with my multiple problems, it will take a longer period of time. It will be a total of six weeks of Vancomycin and that should kill out about anything.

The catheter is still quite sore and this one is much longer and seems to be larger than the other one. I will get used to it but will be glad when the stitches are removed. They are very tight and uncomfortable.

I have to have blood again on Thursday but the platelets were 22,000 and that is higher than they have been in a very long time.

2007-04-20T11:10:00.000-07:00

Well, I must say I am glad this week is coming to an end. It has been a rough one but I made it through as well as could be expected. The area where they put the new catheter in is very sore but is in the process of healing. Yesterday was the day I was at Medical Plaza to have the TEE (Esophageal Echogram) and sure enough, they found vegetative growth on a pulmonary valve. It is small and they think they can take care of it with the Vancomycin I am getting MWF at dialysis. This was what they were hoping to not find because this indicates the starting of endocarditis. I certainly hope next week is less eventful.

2007-04-18T21:15:00.000-07:00

I must say I am relieved the catheter has been replaced. I was to be “under” the entire time in the operating room but I partially woke up and could hear and feel a great deal of what was going on. It was close to the end of the procedure. I must have started to loose a good deal of blood because I could hear the tone of the people in the room start to rise and could feel the wetness and warmth of the blood. They had blood and platelets there just in case and I feel they did a great job. It was necessary to take a stitch, then two or three and I could feel pressure then the pain of the stitches taking place and finally the cutting of the “thread” they were using. It was a strange thing because I could not say anything but just lay there although I do know I was in pain and wrenched several times during this period of time. I think it was then put under a little deeper and I understand this because they did not need me wrenching around on the table. I really think Dr. Hudgens is a wonderful surgeon and do not feel the outcome would have been as good if he had not done it.

I am sore today and quite weak but I had to go to dialysis this morning and that always takes a toll on me. When the old dressing was changed, the floor nurse said it all looked good. I realize there was no other choice but to remove and replace the old catheter because once they become infected, they must go. I was glad they could use the same area as the old one because that meant less stress and trauma.

Tomorrow I go in for the esophageal echogram that Dr. Barbaro called for to make sure he has a good overall picture of what is going on before I see him.

Thanks again for all your thoughts and prayers. They mean so much to my family and to me.

2007-04-17T19:09:00.000-07:00

La Donna's surgery was successful. The doctor was actually able to place the new catheter in the old position. She was released from the hospital today. It might be a few days before she will be able to post her thoughts. No need for verbosity as she will be back soon and capable of updating you.

Almighty God and heavenly Father, we give thee humble thanks because thou hast been graciously pleased to deliver from her surgery thy servant La Donna, in whose behalf we bless and praise thy Name. Grant, O gracious Father, that she, through thy help, may live in this world according to thy will, and also be partaker of everlasting glory in the life to come; through Jesus Christ our Lord. Amen.

2007-04-16T21:57:00.000-07:00

I go in tomorrow for the changing of my catheter. I received two units of packed red blood cells today in preparation for the surgery. I will first get platelets in the morning but to receive blood and platelets in the same day and then have surgery would have been impossible. The blood takes about five hours to transfuse and the platelets another two hours. That is why I received the blood today so we can go ahead with transfusing the platelets and then surgery about 9:00 in the morning.

A. G. will post to the blog while I am in the hospital and unable to do so.

2007-04-13T21:01:00.000-07:00

My latest news is that things are moving very fast. I got the information about what will take place next week. I will have the surgery to replace the catheter on Tuesday at Harris Hospital. Dr. Hudgens will do the procedure.

My hemoglobin is low 8.8 and I will go to the local hospital in the morning for cross typing and then go in Monday after dialysis for the transfusion. I am to be at the hospital by 7:00 AM on Tuesday and they will first give me platelets and then at 9:00 will do the procedure. Since I am considered a high-risk patient, I am not sure how long I will be in the hospital but hope to be able to leave by Wednesday afternoon.

I have an appointment at Plaza Hospital Thursday at 8:00 AM. This one is to do the echogram that requires you swallow the tubing with a camera and shows what is going on behind the heart. This one and the one I had yesterday will give them the total picture of what is going on in my chest. Dr. Malik will do this procedure. If I am not out of Harris, I will have to call Wednesday afternoon and they will have to reschedule. Dr. Barbaro, the infection specialist, wants the additional echo done before I see him. He is booked six weeks ahead but when Dr. Shorie talked to him, he said for me to have the echo and when the results were back, he wants me to make an appointment with him.

It all has been put on the fast track. Every time a doctor says there will be a period of time before they can see me then Dr. Shorie talks to them and things change. This is like a two-headed sword. It is nice to have things moving along but it is also scary that they feel there is such a need for the speed.

2007-04-12T22:23:00.000-07:00

The last few weeks have been tough but interesting. I have recovered from the pneumonia and sinus infection but a blood culture found the steph is still there. They have been giving me high doses of Vancomycin but it has not taken it out. The decision was made to continue the Vancomycin but also go forward with replacing the catheter even though there is a high risk because of my lack of platelets. It has the bacteria in it and it does not seem to be getting better until the source is removed. The steph is coagulation negative strain.

Dr. Shorie wanted me to have an Echocardiogram to check for vegetation….yes vegetation. Sounds a little strange so it can also be called bacteria. If found, it indicates the presence of endocarditis. They were backed up for a month but after they found there was an immediate need for the information, they worked me in within 24 hours. As I always say, I have a wonderful medical community that takes care of me. Dr. Mott will review the results quickly and get the info to Dr. Shorie. Dr. Mott came in when the echo was being finished and he said it did not look good and the time had come to replace the old catheter.

I am to see an infection control specialist, Dr. Barbaro, to make sure everything is being done correctly. Because of my situation and many problems, Dr. Shorie wants to make sure there are no mistakes along the way. I will go back to Dr. Hudgens, surgeon, to set a time for the replacement. I saw him over a year ago but because of my platelet count, he did not want to do the replacement until it was absolutely necessary. Well, that time seems to have come. I will find out those appointment times Friday at dialysis. Dr. Shorie will be there and Pat, floor nurse, has been making the appointments for me.

The procedure is usually a day surgery but because of my many problems and being a high risk patient, I will be in the hospital for several days. I will go in and they will give me mega doses of platelets, then do the procedure, then I will stay for a couple of days for them to observe me. I dread what is ahead but we have waited about as long as we can.

2007-03-30T10:34:00.000-07:00

Went in for blood yesterday and am juiced back up. When I went to see Dr. Page (my oncologist) Wednesday, we were checking my numbers- IgM and IgG are in the normal range and the IgA is low. The IgM helps see how active the cancer is and it is lower than it has been in forever and that is a great thing. That is one good thing the stem cell transplant did so there was some success. If the Amyloidosis had not attacked me and if the stem cells had developed properly, I would be in pretty good shape. I could live with the cancer but of course, that is what happens. Waldenstrom's allows other diseases and problems to attack the patient because the immune system is so bad. I was glad of the good news and another good thing is the Exjade (the iron binder) is bringing my Ferritin/Iron numbers down. They have come down from in the 3,500 range to in the 1,700 range and that takes some of the pressure off my liver and heart. They also checked my chest and there seems to be no pneumonia so that has been taken care of. He said I looked great and for all my problems, the numbers are good. So, all in all it has been a good week.

2007-03-07T15:07:00.000-07:00

The last month has been a rough one. But I thought I was getting better and felt pretty good Tuesday but on Wednesday, things went south. I knew it was time to do something. After dialysis, I went in last Wednesday to Weatherford Regional Medical Center (new name for Campbell Hospital) and they found I had pneumonia and infected sinuses. The doctor came out and told me there was really some nasty stuff in there....my kind of medical jabber. WRMC sent me by ambulance to Baylor/All Saints in Fort Worth and I was first in the emergency room, then in CVICU and then to a private room. I was to go home Monday but during dialysis, I had such a headache they could not ease it with Tylenol and Vicodin and the doctor called for a CT on my head. He was afraid because my platelets were so low there might be some bleeding in the head. I told him it was sinus but he still wanted to check. Got the word Tuesday and the CT did not show anything but sinus problems. It is sure good to be home because I really get tired of hospitals. So now I am juiced up on blood, platelets and antibiotics so the ole gal is set for a while.

I have been battling this stuff for a month and it finally just got me down. They also found I have a staph infection. They first thought it was MRSA but it turned out to be a lesser kind and I am thankful for that. They are treating it with Vancomycin and it should be gone pretty soon.

Looking from my desk through the windows in the garden room and out into the garden, I can see the sun shining and it is a beautiful day. It is wonderful to be home and enjoying the day. I hope to be in the garden by Saturday and doing what I love.

Quick Update

2007-03-02T23:12:00.000-07:00

La Donna is currently in the hospital. She is battling pneumonia, she is doing better. The one thing we really need at the moment is your prayers.

O God, the strength of the weak and the comfort of sufferers:
Mercifully accept our prayers, and grant to your servant La Donna.
the help of your power, that his sickness may be turned into
health, and our sorrow into joy; through Jesus Christ our Lord. Amen

2007-01-20T22:00:00.000-07:00

The Type O blood shortage continues and I was concerned that I might not receive the transfusions I needed yesterday but when the head of the lab at the hospital saw my numbers she said I would receive blood from the reserve and they could order the platelets for me. I was very thankful for this and appreciate her understanding. My Hgb dropped to 7.6 and the platelets are going down again and were at 14,000. This was very disappointing because the platelets had been holding and rising a little and that was encouraging but the bubble has burst and they are not responding at this time. It was a long day because I went to dialysis early so I could get on to the hospital for the transfusions so from 4:45 until 4:00 Friday I was sitting in the chair at dialysis then onto the chair at the hospital for transfusions. It was worth it because I feel much better today and all “juiced-up” for awhile.

2007-01-11T01:39:00.000-07:00

After dialysis yesterday, I went to Dr. Page’s office to check my numbers and the hemoglobin was 9.3, which is not bad, but my nephrologist wants it to stay above 10.0. My platelets dropped from 19 to 17 and that was a disappointment but they still do not want to give me platelets unless they drop further. My white count is very low so I will self-inject three times with Neupogen. I then went to the hospital for typing and crosschecking but when I arrived home, I had a message from The Center for Blood and Cancer Disorders. I returned the call and was told not to go in for blood on Thursday because there is a national shortage on Type O Positive and Negative blood and I am to wait until next week.

This is why I have always been so thankful to people who will take their time to give blood and platelets. The blood has been there for me and this is my first experience of being told there is no blood for me. I am sure it will be there next week and I understand the need to keep the reserve for emergences.

2007-01-08T16:39:00.000-07:00

My RLS (Restless Leg Syndrome) is getting worse and has been since I have been through so much chemotherapy. I asked the nephrologist at the dialysis center if I could take something for it. I had heard an ad on TV for a medication that is supposed to help RLS. He said he was not familiar with that one and would have to check into it but he had prescribed Neurontin. He gave me a prescription for it and the pharmacy sent Gabapentin for the Neurontin. I took one Friday night before going to bed and was not fit for anything the rest of the weekend. I could not get out of bed because I was dizzy and unable to stand up. I do not know if it was a reaction to the medication or maybe I had something that was going around. There are lots of “bugs” going around this area at this time of year. I will try again in a couple of days when I have completely gotten over this episode. I really hope it will work for me because the RLS is very disturbing and will not allow me to rest or sleep.

2006-12-28T15:54:00.000-07:00

My hemoglobin had dropped again to 8.4 so I had to get two units of packed red blood cells today. My platelets have risen another two points and are now at 19. We feel it is a good sign that they are holding steady and rising a little. Not sure the stem cells are working but I do feel they are trying to become more active. At least I keep telling myself that. While I was sitting there in the hospital, some pretty silly thoughts crossed my mind. I want to share them with you all. You have been kind enough to stay with me through this so I want to end the year with something silly then something serious.

The silly first:
Well I am now juiced up with someone else's blood. I often wonder if I will ever get an immense craving for something weird or decide to become a serial killer, a belly dancer, a garbage collector, a great artist or lap my water from a bowl like a golden retriever. You know I have no idea where this blood comes from and what their drives might be.

My New Year’s Resolutions are such as this:
Keep on exercising, eat better and lose about 10 pounds, get up each morning and bribe the Stem Cells to start working. Who knows maybe it will work.

Now the serious:
Please know that I am thankful for all my blessings. I have so much when there are others who have so little. I consider each of you my angels on earth who help prop me up with your good wishes and prayers. Thank you so very much. I am so thankful for my family, friends, my doctors, and others I come in contact who are in the medical profession and help me in so many ways and also the many unseen people who go to the blood bank and donate because without them, so many would be unable to live. I am also thankful for our military people who are so diligent in their jobs and keep us safe at home. So you see, when I weigh the good and the bad in my life; there is no contest I am very blessed.

Now to end on a lighter note:
Better go because I have a distinct urge to go outside and chase a car but wait I have to scratch myself first and I want to lap up a good drink of water before I whine at the door.

Take care and I love each of you

2006-12-14T00:06:00.000-07:00

Would like to share some good news with you all. I have not received platelets in about two months and they are staying stable and even increasing a little. They had been staying at 14,000 for a while. Then they had risen slightly to 16,000 and yesterday they were 17,000. (140,000-440,000 is normal) This is good news because something is making the numbers rise because it has been so long since I have received platelets.

Week before last my hemoglobin was 9.4 and I received two units of packed red blood cells. Last week I was tested and my hemoglobin was 11.0 and I was glad but this week it was tested at 11.7 and now I am pretty excited. One thing is I do not have to spend today in the hospital being transfused but I feel something is happening to make the numbers stay stable and even rise. Not saying the stem cells have started working but something is happening and I am thankful for that.

I wanted to share this good news with you all because you have been there with me at the low times so even a little good news is worth sharing.

2006-11-30T16:42:00.000-07:00

Finally got my Echocardiogram report back and it is pretty good. The tech and the doctor are amazed that my heart has not been damaged more after all it has gone through. The report is:

2D Findings:
Left ventricle size and wall thickness and systolic function, are normal.
Normal mitral valve. Moderate mitral regurgitation (a backflow of blood from the left ventricle into the left atrium in systole across a diseased mitral valve).
Thickened and calcified aortic valve cusps with reduced mobility.
Moderate aortic insufficiency.
Normal right ventricle size and function. Moderate pulmonary hypertension.
Normal tricuspid valve with moderate tricuspid regurgitation.
Normal atria.
No pericardial effusion.

Impression:
Sclerotic aortic valve with moderate aortic insufficiency.
Normal left ventricle size and function.
Moderate mitral regurgitation.

In short, my heart has problems but is still strong and pumping away.

Everything else is about the same, dialysis three times a week and still getting blood every two weeks. It has been almost two months since I have received platelets. They are staying stable and this week they went from 14,000 to 16,000. That is good news. Of course, they are far from normal (140,000-440,000) but at least they are stable and went up a little on their own.

I hope your Thanksgivings were wonderful and your Christmas and New Year are the best ever.

2006-11-19T00:07:00.000-07:00

Things have been pretty much the same so I have not been diligent in writing in my blog. But the last couple of weeks, I have not felt well and have experienced a sharp pain in my chest in the area where the catheter ends. This pain radiates into the lower spine area and even makes my lower lip tingle. Sounds silly but that describes it. My nephrologist at dialysis, Dr. Shori, wanted me to go back to my cardiologist, Dr. Mott, to check my heart. I had not seen him since 2004 because of my other problems; he said they overshadowed everything else. I saw him Wednesday and he did an ekg and could tell there had been some changes since the last time but he was surprised there had not been more changes because of all that had taken place. I go in next Thursday for more testing but he said there would be very little he could do for me even if I came into his office having a heart attack because of my low platelet count and I would be too great a risk. I know that may seem a bit harsh but I appreciate doctors who are honest and straightforward with me. All he will be able to do is try medications. He has started me on Isosorbide to be taken on the days I do not have dialysis. Dr. Shori has started me on Nexium so we shall see if there is any change.

I went to Dr. Fenves, my nephrologist in Dallas, Tuesday and he was pretty impressed with most of my numbers other than the ferritin level. It is still at such a high level there is a great chance that it will start to damage my heart and liver.

Seems I am like a dog chasing their tail I just go round and round and things just keep going down hill. Thank goodness for my family and friends because they make all things bearable.

2006-11-03T14:08:00.000-07:00

I had the Echocardiogram and have not received the official results but while I was having the test, the nurse/tech said it all looked good and clean. I know I have a murmur and a regurgitating valve and wanted to hear it. She said it is not the same that the doctors and nurses hear when they are listening to my chest but she turned on the sound and told me the sound I should hear. Sure enough, there was a small pop or click and she said the next sound was the murmur. She also told me the sound to listen for that was the valve closing too slowly and that is what allows some blood to leak back into my heart. Very interesting.

I had another Free Lite testing, the last one I had was in January and the numbers have made some movement. Free Kappa Lite Chains, S is 46.60 and it was 61.70 in January the Free Lambda Lite Chains, S is 61.90 and was 89.3 in January. Normal FKLC is 3.30-19.40 and FLLC normal is 5.71-26.30. My numbers are still high but at least the movement is in the right direction. I am still able to go about two weeks between packed red blood cell transfusions and it has been over a month since I have had a transfusion of platelets. My platelet number is staying around 13,000 – 15,000 and as long as they stay level, I will not have to receive a transfusion. As I have said normal platelet count is between 140,000 – 440,000. They feel mine will probably never rise above where they are now and as long as I do not have an accident or hemorrhage, I should be o.k.

Dialysis is still about the same but I can tell my energy level is not as good as it used to be. Rest is the best thing for me and that enables me to pretty much do what I need. I have made some choices and will be cutting back on activities that do not involve my family and friends. Those are the most important things to me and I want to keep my energy for my family and most especially for our wonderful grandsons. We have a great weekend planned after Thanksgiving for Arthur, Alan, Robert and me. I am looking forward to it as much as the grandkids. We will be at the Gaylord for the Lone Star Christmas and the presentation of Ice. Fun time with Arthur, the grandkids, beautiful hotel and great food for a weekend…who would not be looking forward to it.

Faces of Courage Award honors Weatherford cancer patient

2006-10-11T21:22:00.000-07:00

2006-09-17T03:49:00.000-07:00

It has been a while since I have written in my blog. Not much has changed but that can be a good thing. I am still taking the iron binder and at least my ferritin numbers are stable. They really have not come down but at least they are not still rising. I am hoping the numbers will begin to come down because they are dangerously high.

The September meeting of the Amyloidosis Support Group/Texas Area was Saturday, September 9th and the program was wonderful. Often we hear that people who have Alzheimer’s have amyloid, and this is frightening when one of my diseases is Amyloidosis. In the q & a period, a member asked if there is a stronger possibility of someone with Amyloidosis having Alzheimer’s. The answer was that these are two different types of amyloid. The definition of amyloid is pertaining to or resembling starch. It is a starchlike protein-carbohydrate complex that is deposited abnormally in some tissues during certain chronic disease states, such as amyloidosis, rheumatoid arthritis, tuberculosis and Alzheimer’s disease. So, there are many types of amyloid but this was good to hear because I have lost my mother, two aunts and an uncle to Alzheimer’s disease. This does not mean I will not get the disease but it does mean that my amyloid is a different type. I must be thankful for any good news that comes along.

I just went to a visitation for dear friends who lost their son and have another dear friend who lost a young grandson awhile back. I think a loss like that would be such a terrible mountain to climb. It makes my struggle seem so much less because the loss of a child must be so difficult.

I have friends who ask me what do I do all those hours when I am at dialysis and in the hospital. Mind over matter does help keep me sane. I keep occupied the hours I am required to take treatments by lots of means. The bag I carry everywhere is full of wonderful things to help pass the time away. I work crossword puzzles, work number puzzles, read, do my nails, talk on the cell phone; listen to my CD player with headphones, etc. Dialysis has individual TVs and that is good. Not much on but do keep up with Fox News, weather, a few garden shows and other how-to shows. When I am at the hospital and want to get up, I can walk around endoscopy. I just hook my tubing around "George" and he rolls around with me anywhere I go. Thank goodness because it would be bad if he did not and the tubing pulled my catheter out. It is sometimes overwhelming but I always remember there is a better time coming and each present situation is just temporary. Everyone I deal with is great and we have become like members of an extended family.

2006-08-16T16:32:00.000-07:00

I celebrate small victories and one is I do not have to get blood or platelets tomorrow. My hemoglobin is 10.5 and my platelets are 15,000. The blood number is really pretty good considering it has been two weeks since I received a transfusion. The platelets are low, should be between 140,000 and 440,000 but 15,000 is pretty normal for me. Sandy said maybe next week but I said I wanted to push it to a week after that and she agreed to let me push it. I will enjoy sleeping past 4:00 in the morning and then taking my time and working in the yard until the temp runs me out.

The Blood Disorder Center/Texas Cancer Care has given me a very nice honor. They have chosen me to be honored as a Face of Courage. I thanked Dr. Page and told him I appreciated the honor and he said it was a unanimous decision and that I had been through so much and had done everything they had asked me to do, kept up my spirits, helped others through bad times and dealt with what ever has been sent my way. I must say I am honored by his comments.

2006-07-17T10:38:00.000-07:00

Things had been going along without much changing. This weekend certainly was a change. I had not felt well on Friday and knew I was experiencing stomach problems and blockage. Saturday was getting worse but I worked outside in the gardens until about noon and came in because of the heat and the fact that I had completed what I wanted to do. Then things started to go down hill pretty quickly. By approximately 3:00, we went to the emergency room at Campbell Hospital. I was vomiting and the blockage was becoming unbearable. They took blood and x-rays and the diagnosis was: colonic inertia, vomiting and thrombocytopenia. I was given shots to help curb the nausea and stomach pains and given medications to help with the blockage. Before I left the hospital, I had already begun to heave but the nurse said I needed to keep it down…right easy for her to say. I lost everything on the way home and received no relief. About two hours later, we were on our way back to the hospital.

This time they used the tests from earlier in the day but also did a CAT Scan. The diagnosis this time was: constipation, thrombocytopenia and abdominal pain. They gave me the relief I needed this time and we arrived home about 2:00 on Sunday morning. Yesterday was not the greatest day because I was so very weak and unable to eat but they had also cautioned me that I was dehydrated and needed to be careful. Today is better. Went to dialysis and everything was ok there. Not the weekend I had hoped for but feeling much better now.

2006-07-09T06:20:00.000-07:00

Not much has changed but I am able to skip every other week for blood testing and transfusions. I had made this decision because of my numbers and it seems to be working. I talked to Dr. Mary Skiba (Dr. Page was not in last week) and she agreed that it was ok to do this. It should help with my iron overload and it is so nice to have a week off from going in on Wednesday afternoon for testing then to the hospital on Thursday for the transfusions. Will continue this until my numbers indicate this is not a good idea.

The last time I saw Dr. Skiba, she asked me what keeps me going and what makes me get up and function each day? I told her it was because of my family, friends and just the fact I feel I have so many things to do that I am not ready to give up. An example of this is because of my grandsons. When school was in session in the spring, Robert was involved in a walk for cancer awareness and he told his dad, A. G., that he wanted to walk for Nonna, I was so very touched by this. Yesterday when Alan was here, he shared something with me that was so very sweet. When he was at camp last week, the fellow campers in his cabin were talking about what they would wish for if they had three wishes. Alan said he would wish for world peace, all who are hungry have food and the money they needed and that Nonna did not have the diseases she has and that she was well and healthy. Now aren’t those two of the most wonderful reasons to live for?

2006-06-23T16:23:00.000-07:00

Went to the hospital yesterday and got "juiced-up" on blood and platelets. First unit of blood went great but when the second unit was administered, the butterfly connection came loose. Blood may be thicker than water but when it is gushing out of a tube, it is hard to tell. I said there is a problem and the nurse was still in the room and was able to take care of it pretty quickly. By then, I was soaked with blood on my right side. I had on an outer shirt and an inner shell top and the outside shirt was soaked as were my pants and pillowcase. The blood came off the pants fine but they had to wash the shirt and pillowcase. So this time, I did not get two full units of blood because I do not think it counts when it soaks your clothes. I was anxious to get home and take a bath and get clean clothes on because I could still smell the blood. Well as they say, it all came out in the wash.

The days I have dialysis have gotten to be more difficult for me to bounce back. I used to be able to function pretty well after an hour or two of rest but it has gotten to be longer. I have very little strength for the rest of the day but usually the next day is better. It is frustrating but nothing can be done about it so I just really enjoy my good days.

2006-05-31T16:52:00.000-07:00

Really not much to tell just the same ole thing. I am getting platelets in the morning. Got blood last week and the hemoglobin was 9.9 so they are not giving me blood tomorrow. I am sure it is better to have the platelets and blood transfused on different days but it limits my time off from anything medical.

The dialysis has been most difficult this week with my blood pressure bottoming out. It took 30 minutes this morning before it came up enough for them to let me go. The top number has to be 100 or more before I can leave the center and at one time mine was 68/48. It finally registered 100/54 and they let me go. I just came home and rested until I could get my land legs. Susan, the lady who works for me, was here today when I got home and she is great. She always makes sure I am comfortable and have something to drink. I am fine this afternoon if I sit or lie down but if I stand or try to walk, I become very dizzy and do not make it very far.

2006-05-18T05:07:00.000-07:00

Last week was very difficult but this week is much better. It remains an up and down ride but when I feel good, it is great. A. G. told me when I say I feel good is like most people’s worst day but really there are days when I almost feel normal. I am very thankful for those days and can really get a lot of things done and enjoy that time.

I have reordered the Exjade, the iron binder, because it seems to be doing some good by bringing my ferritin level down. Other than that, everything is about the same so there is not much to tell but just letting you know things are pretty level at this time.

2006-05-07T05:15:00.000-07:00

The infection has been taken care of because Levaquin is like a miracle drug for me and has brought me through several struggles. The bleeding has also stopped and I am back to normal, well normal for me. I am still taking the iron binder Exjade and hope it is having a good effect on me. Blood was taken last week and is being checked to see what the iron numbers are and I should have those results on Monday.

Things are pretty stable at this time.

2006-04-26T16:56:00.000-07:00

I have developed a bladder infection. It has been coming on for a while but I hated to give into it until I had no choice because of the bleeding. They now have me on Levaquin and I am sure that will take care of it. They told me if the bleeding persisted, I was to come back in for more testing. They think it is because of my low platelet count and with the infection, it is compounding the problem. My platelets were 9 but my hemoglobin was 10.6 so I was pleased with that. I will get platelets in the morning and hope that will help the situation. Dr. Page has ordered 6 units of platelets and I have never taken less than 10 so the hospital called him when I was there for cross typing. He said he wanted the 6 and it seems he is going to change up the amounts I receive to try and make my body accept it all better. Kind of like trying to fool my system with different amounts so it will not be as likely to reject the transfusions and create antibodies against them.

It seems like my body tries to think up things for me to deal with but I have great doctors who continue to help me.

2006-04-20T08:21:00.000-07:00

Not much is happening that is different. I have been taking the Exjade (iron binder) for about 2 ½ weeks and the latest report is that the iron saturation is down from 77 in March to 49, the last time it was taken. This is encouraging but I will not know the real numbers until my ferritin is monitored and they only do that quarterly. I will be anxious to see what it is at that time.

The dialysis center is kept quite cool and we all bundle up in blankets to stay warm. It is not cold to the workers but when you are sitting there, it seems too cool. Another thing that makes the patients cooler is the fact that our blood is cooled down when it goes through the machine and before it is returned to our systems. The blood is kept around 36.5 to 37.0 but can go as low as 35. If it goes over 37, the cells are too warm and begin to breakdown and will let potassium leak into the blood system. It is quite a science and I continue to question and learn about the process.

2006-04-08T05:21:00.000-07:00

A good thing took place this last week; I did not have to go in for transfusions. This is two weeks in a row because the week before, I just did not go in for testing. Sometimes it helps to be a little aggressive and just do what you really want to do. This is not a good idea to do often but sometimes it feels pretty good. I did go in Wednesday and my hemoglobin was 10.5 and the platelets were 13. These numbers are very low for a normal person but for me…they seem to be pretty normal. They said I did not have to have transfusions and will test again on next Wednesday. The Exjade, the iron binder, continues to make me a little sick at my stomach but maybe it will just take awhile for my system to adjust to it.

2006-04-04T06:30:00.000-07:00

I received the Exjade, the iron binder, yesterday by special delivery. They look like large Tums and must be dissolved in orange juice, apple juice or water. It takes a long time to dissolve but has very little taste. It actually makes the juice taste a little creamy. I take two tablets one time a day so it is quite easy to deal with. I am anxious to see my ferritin numbers come down, 2565 is extremely high for iron. The dosage made me a little sick at my stomach so I think I will take them just before bed and I think this will take care of that problem.

Tuesday, April 4, 2006
6:30 am cdt

2006-03-24T17:36:00.000-07:00

I received platelets yesterday because they had dropped to 9 but I did not get blood because my hemoglobin was 12.7, highest it has been in a very long time.

The wheels are grinding toward getting the medication I need, Exjade, for my iron overload. Dr. Page’s office has done the paperwork and it is in the hands of the pharmaceutical company. They are working to have my insurance company accept the prescription. A company rep called today and said they were working on it and should know in a week and would contact me.

I must say I always thought Popeye got extra strength from the iron in spinach. Excessive iron has not given me that boost in energy and I am very tired most of the time. I have great difficulty sleeping but that is not really a new thing because I had problems with this for a long period of time. Many nights consist of three or four hours of sleep but I do have to rest during the day because of the fatigue. Often I take advantage of the “down time” during dialysis and while in Endoscopy at the hospital for transfusions. So, I guess I get catnaps during the day.

2006-03-16T05:23:00.000-07:00

I keep hoping I will be able to post good news but that does not seem to be the norm for me. I got my numbers from the dialysis center and the news was not good. They take blood for simple testing each Wednesday but once a month they do a complete workup for a better picture of what is going on with each patient. The numbers included my ferritin numbers (iron) and they are very high.

When I was at Dr. Fenves’ office earlier this month, he mentioned that my iron numbers need to be closely monitored because when you are given so much blood over a period of time, the iron collects and is not eliminated in amounts that are needed. During my appointment with Dr. Page yesterday, he mentioned the high ferritin numbers (iron). My numbers are 2,565 and normal is 10-291 and my ferritin sat (calc) is 77% and normal is 20%-55%. Ferritin is an iron compound formed in the intestine and stored in the liver, spleen and bone marrow for eventual incorporation into hemoglobin. I am not able to eliminate the excess amount and this will lead to problems with my heart and liver. My liver has been fine so far but this could change because of the excess iron. My heart is not in the best of shape and this will put more stress on it. Until now, there has been nothing that can be done for this situation but a new drug has been approved and has been on the market for only a few months. Dr. Page wants me to check with my nephrologist to see if a dialysis patient can tolerate it. He has checked and thinks it can be given to me. It is very expensive and (if I can take it) we will have to get approval from our insurance company. I cannot complain about our insurance company because they have been so very wonderful in assuring that I get the best of care. The drug is called Exjade and I will check on it with the nephrologist at the dialysis center tomorrow.

Dr. Page and I have talked about the fact that eventually my body will receive little or no benefit from the blood and platelet transfusions. I asked him what would be done at that point because I want to have the information when that time comes. He said I will continue to receive the transfusions and an example of what will happen will be that my count would be 8. and after transfusion it would only go to 8.5. But at this time, there is nothing else to be done for me. When it gets to that point, they will still continue to transfuse until the end. I have been asked what that time frame is and no one knows. My situation is so unique that every day is a learning experience for my doctors and for me. We just take it a day at a time and hope for the best. Thank you for your support and I hope this blog can be of help to someone when they are facing tremendous odds. Even in the darkest of times, there are good things that happen to each of us. I have many things to be thankful for and continue to hope that what they find from my situation will help others.

Well off to the hospital for two units of blood. My hemoglobin was 9.9 yesterday and my nephrologist wants it to stay above 10…almost made it. My platelets are 12 and that is very low but they are not going to transfuse me with platelets this week.

2006-03-09T23:53:00.000-07:00

The headaches are gone and I did not go to the doctor about them. I got to feeling better and decided not to rock-the-boat. If they occur again, I will go then and be tested to see what it might be. I am hoping it was just one of those things that occasionally happens to everyone and there is really no real problem.

Dr. Shorie, the nephrologist at the dialysis center, made rounds on Monday and talked to me about the itching that I experience. He said it is usually a sign that the body is building antibodies against the blood and platelets that are received over a long period of time. Dr. Page had told me this and there is nothing that can be done about it. Dr. Shorie has upped the Epogen injections to 50,000 units at each dialysis session to try and make the red blood cells more active and help with my fatigue. It had been at 45,000 units, which was considered very high, but now the amount is higher. I said I thought the 45,000 units was the max and they said the 50,000 is very, very high but he wanted to try and see if the higher number would be of any help. He now wants the hemoglobin to remain above 10.0 because even the 9.0 he has suggested a couple of weeks ago is not high enough to keep my heart from working so very hard.

My hemoglobin was 10.7 and my platelets were 17,000 and I did not have to have transfusions this week. Enjoyed that fact because it is nice to have a day once in awhile that does not involve anything medical.

2006-03-05T06:19:00.000-07:00

Dialysis has been about the same and I had blood and platelets on Thursday. Never one to enjoy the status quo, the new thing has been a dreadful headache located on the right side of my head. Take your hand with your fingers spread out and place it over your right ear then think of an imaginary line on the top of your head, this is the area that is affected. I do not think it is a sinus headache because I have had those and it does not feel the same. The left side does not hurt nor does the back of my neck. It is a dull ache but about every 30 seconds a sharp shooting pain goes through that side. It makes me blink and sometimes give off a quite almost silent moan. It is hard not to fear the worse but I am hoping it is an inner ear infection or something simple. It has been a problem since last Wednesday but got worse Thursday evening and I planned to go to my primary care doctor, David Reeve, Friday after dialysis but it went away. It returned on Friday evening, always before the weekend, and has continued so I will go to Dr. Reeve on Monday.

I went to my Dallas nephrologist, Dr. Fenves, last week for an appointment and did get some good news. He is impressed with the way my catheter has preformed. He feels since it has been in for a year that it will perform well for some time to come. He feels with the care the dialysis center has given it and with me keeping it so very clean, the chances of infection are remote. He realizes it must keep performing because of the danger of having to install another one could present problems because of my low platelet count. Even minor surgeries would be major problems for me because of my blood not having the capacity to coagulate. He also does not want to give up on my stem cells and says they could still begin to work. He is so very kind and calls me his miracle lady and always brings an associate into the room for my visits. He tells them of my initial disease (the Waldenstrom) and how very rare it is then on top of that, I have another rare disease (Amyloidosis) and how extremely rare it is to have both. It does not bother me because I keep hoping that one of these young doctors may be the one who finds the reason and cure for my maladies.

2006-02-23T04:11:00.000-07:00

My blood pressure bottomed-out again yesterday. I felt fine until I stood for my standing blood pressure count and I became very dizzy and the count was 58/38. I had to wait for a while but the numbers did not come back to a level that they would allow me to drive home. Arthur picked me up and after an hour or two, I felt better.

My phosphorus count is very high and that has contributed to my itching. I was taking one phosphorus binder a day but they have increased it to two per meal. When your phosphorus gets too high, it leaches out of your bones and into your blood stream and this causes itching.

Thursday, February 23, 2006
4:11 am cst

2006-02-17T18:18:00.000-07:00

Dialysis went well today.

I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.

I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.

The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transfusions. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.

2006-02-13T17:50:00.000-07:00

Dialysis went well today.

I went in for my lab work and my hemoglobin was 11.1 (great) and my platelets were 19,000 (good for me). Today was my appointment to see my oncologist, Dr. Page. I asked him to decipher the results of the Free Kappa & Lambda Lt. Chain Assay I had in January. He explained it very well and the bottom line is it does not show amyloid deposits in my blood and shows no evidence of Multiple Myeloma and both of those findings are very good. These tests are relatively new and I am glad to have the test as part of my records.

I asked Dr. Page if anyone ever has stem cells that do not develop and he said it was a possibility. He feels we have gotten a minimal response from the stem cells and that will probably be all we get because he said with me being a year out from the transplant, he does not feel they are going to respond any better. He has told me before that each time I get blood and platelets (over a long period of time) they do me less and less good. I asked him if my stem cells were not going to work, when would we know that and what then? He said the platelets will be the best gage and when they are between five and ten and a transplant does not move that number then we will know. I asked him what then, would I continue to get transfusions? He said yes but we will deal with that when it happens. At this time, they have nothing else to offer.

The last two times I have received transfusions have resulted in me itching all over at dialysis the next day. I asked Dr. Page if this was just a coincidence and he said it was more likely that my system is building antibodies against receiving so many transplants. As I receive more of each, my body will fight the intruder with antibodies. It is just my body trying to control the situation and it is unable to do so. It is trying its best but my maladies are just too strong for it to deal with. Too much being thrown at it over these last six years.

2006-02-09T20:44:00.000-07:00

OK so much for “not so bad” numbers. I went in Wednesday after dialysis to have blood taken and see what was happening. The platelets were 7 and that is the lowest they have ever been. The hemoglobin was 8.00 and I have been warned that it must stay at 9.0 or above and the white blood cell count was 2.2 even though I had given myself 4 shots of Neupogen. I am now giving myself 4 more shots to try and bring the wbc up. I went in today and received 2 units of packed red blood cells and 10 units of platelets.

I have long fingernails and tonight when I blew my nose (sorry, I know that is not what a lady talks about but you all have been through a lot with me) I accidentally scratched my nose. It bled and bled and I finally stopped it with extreme pressure. It is all right now and I certainly learned a lesson…be a bit more gentle. The whole time it was bleeding, I kept thinking to myself…oh, dear I just got that blood today.

So, obviously the stem cells are still just hanging around and not earning their keep.

2006-02-02T14:06:00.000-07:00

At least dialysis was not quite as eventful yesterday as Monday. Made it almost to the end and the cramping started again in the legs, feet and hands. The physician’s

assistant was there and she, the head nurse and my tech discussed my situation. Starting tomorrow, they are keeping me on the machine for an extra 15 minutes. Instead of three hours, it will be three hours and 15 minutes. They feel the extra time will allow the machine to remove the toxins and fluids a bit slower and not put such a strain on my heart and system. Most of the people there are on for four hours but that can depend on your size. I am small and can be on for a shorter period of time but since my heart and blood pressure are reacting so violently, they want to try me on for another 15 minutes. If it will make things easier, I guess the extra time is worth it.

I must say I do get a great deal of things done while at dialysis. Many of the people just sleep but I cannot do that because I feel I am wasting my time if I do not accomplish something each day. Tomorrow I will complete my December and January time sheets for volunteer hours for Master Gardeners and then do my nails. Now I did not say I try to do anything that is earth shaking because remember I am limited to what I can do sitting in that chair. I read, do crossword puzzles, watch TV, listen to my CD player, do my grocery list, talk on my cell phone, plan what I will do after dialysis and anything else I can do under those restrictive conditions. Sometimes my plans are put on hold until I can gain my strength back from the dialysis but I always have my list ready.

2006-01-31T13:00:00.000-07:00

Dialysis yesterday was a downer. I made it through just fine until the last few minutes. I started having leg cramps and then became very ill. The nausea was terrible, I started throwing up, and my blood pressure was on a roller coaster ride. I was taken of the machine and kept a wet towel on my face and neck. I could not sit up and for sure I could not stand. They gave me saline and when this did not help, they gave me a shot of a medicine that was to help with the nausea. These are given to me through the line that they use for the dialysis. The nausea did not respond and I continued to feel very weak and extremely ill. I did not know it but I passed out for a few seconds and was told this when they said the doctor wanted me to go to the hospital by way of ambulance. I told them I felt I could go home but they said “NOT” because I had fainted and was still having multiple problems.

They called 911 and soon the ambulance arrived. My dialysis center is located only a few blocks from the hospital but I must admit it seemed like forever. I became extremely ill and threw up again. We arrived at the hospital and after checking in and talking to the doctor who was at the emergency room, I had an X-ray, EKG and other tests. Everything was really o.k. and the conclusion was that too much fluid was taken off in too short of time. They are talking about having me on the machines for a longer period of time. Instead of the three hours, maybe it will be increased to 3 ½ or 4 hours. This will put much less stress on my heart and system. I will find out tomorrow at dialysis. I rested the rest of yesterday and feel better today.

Some good news that I received while at the hospital was that my numbers are not bad. My hemoglobin was 9.8 and my platelets are 27,000. This is pretty exciting since I have not had a transfusion in a week. I hope this trend continues. It will be year February 22 since I received my stem cells back and maybe they are gearing up to give me a birthday surprise. I now have two birthdays: one my actual birthday and the day I received my stem cells back. M. D. Anderson considers these both “official” birthdays.

2006-01-28T08:31:00.000-07:00

Yesterday at dialysis was the first time my fingers started to draw like my toes and feet have done. Kind of a funny feeling to have your extremities decide to go in directions of their own choosing. They really do not contort but just draw because of the fluids that are being taken from my body.

My blood pressure fluctuated greatly yesterday at dialysis. It was measured at one time at 79/58 then went to 197/108. It settled down to an acceptable rate before I left. They asked me to come back for another count that afternoon but I had meetings and said it would not be possible. I asked them if I got a home unit and checked it myself would that be acceptable. They said yes and to keep an eye on it daily. It is not uncommon for me to become very dizzy and lightheaded when I get up or exert myself. I purchased a “deluxe” model but it is very easy to use so I guess I am set. They asked me to bring it with me Monday to calibrate it with theirs. I am going to ask them…now what? I can see what my blood pressure is so what should I do and when should I do it. Is just sitting or lying down sufficient? In reality, I could have done that without a monitor but I guess it is good to have “a new toy” once in awhile.

2006-01-23T20:30:00.000-07:00

We had a wonderful weekend as a family and it was a great time with the best family around.

After dialysis, Dr. Shorie made his visit for this week. The first thing he asked me was when I was going to get blood. I told him I was to go in this afternoon for testing and was sure they would order it for tomorrow. I wanted to wait until Wednesday because of prior commitments tomorrow but he said absolutely not. He has written orders that I have taken to my oncologist stating that I am to receive transfusions when my hemoglobin drops below 9 and it is to remain at 9 or above. He said people with dialysis also have heart involvement and when the hemoglobin drops too low, the heart is made to work overtime to compensate. Another words, it is trying to do its job but it cannot and it just wears itself out trying. He said when my hemoglobin drops then I am a walking candidate for heart failure. When it was tested today, it was 7.4 and the platelets are 13. I am to go into the hospital at 8:00 in the morning for transfusions. When you are on dialysis, you are a different breed.

I know after the transfusions, I will feel better and have more pep.

I also received the results of my Free Kappa Light Chain and Free Lambda Light Chain with Kappa/Lambda ratio. I know this is something new I am throwing out to you and will study more about the results and report it in terms we all can understand. Sometimes it takes me awhile to understand it well enough to share the information.

2006-01-20T17:07:00.000-07:00

Yesterday was my one-year anniversary on the start of this journey. We left for Houston on the 19th of January 2005. I am not sure I would have gone through with it had I known what was ahead. Then on the other hand, I might not be here had I not had the Stem Cell Transplant. Dr. Anderlini said I would walk through hell and he was right. I know they have done everything they could for me and are at a loss of what to do to make the stem cells start working.

I have not had a transfusion since Tuesday before Christmas and my numbers have been holding: hemoglobin 8.5 and platelets 16,000. When I went in for testing on Wednesday, my numbers had not changed and I was quite surprised because I feel pretty tough. I am weak, my breathing is labored and my heart is laboring more than it should. When it is like this, I can hear the pounding in my ears and at times I can hear “cricket sounds” and become dizzy when I stand-up.

When I was at dialysis this morning, I was told that my hemoglobin was 7.7. It was taken on the same day the other lab did the test so there is quite a difference. The way I feel makes me think the 7.7 is closer to the correct number.

We are going for our youngest grandson’s first communion on Sunday so this weekend will be a busy and wonderful one for us. We will go to Comanche where our son is an Episcopal priest at St. Matthews and Trinity in Dublin. It will be a special time for an uncle to give his nephew his first communion. Robert lives in Flower Mound but will be at Comanche for this event.

I will go in for testing again on Monday and will be anxious to see what the results are on that day. Thank you for traveling this road with me this past year. Your support, prayers and best wishes have made it much smoother for Arthur and me.

2006-01-07T07:26:00.000-07:00

Almost a month since I have written in my blog and not much has changed other than I know I have less energy and seem to be weaker and weaker. Still able to do much that I want to but have to rest more often. That is hard to do and makes me unhappy with myself but I have no other choice.
The last time I was checked my platelets were lower than they had ever been (8,000) but my hemoglobin had not dropped below 8.2. That is low but mine has been much lower. Transfusions got me through Christmas and New Year’s and had great holidays. Will go back Monday to be checked again and am sure there will be a need for transfusions but will not be able to have them until Wednesday because Tuesday is full of meetings and other things.

If you are not familiar with dialysis, I will try to describe about it in some of the postings. It is very hard on the body especially the heart because it makes a great deal of demands on the heart each session. My blood pressure will fluctuate dramatically. It has gone from 210/97 at the highest to 57//34 at the lowest and those are dangerous extremes and shows why it is so hard on the heart. I also have painful muscle spasms during dialysis but they have begun to last after the treatments. They are uncontrollable and if they did not hurt so badly, it might be funny to see the toes and feet draw and turn under in ways that I cannot do on my own. It is like they have a mind of their own. Then the leg spasms are like “Charley-horses” and have become so bad that the only way to get them to stop is to stand and rub the muscles. When they become so bad at dialysis, they will turn off the machine for a period of time and give me saline until I can again go back on the machine and finish the treatment.

Best wishes to each of you for a wonderful 2006!

2005-12-14T15:00:00.000-07:00

Over the bout with hives and going great again, until, yes there seems to always be a catch. Had a busy weekend and did not feel 100% but thought it was just that I had been on the go. Sunday night and early Monday morning I knew it was something else. I began to feel dreadful and was unable to sleep, had extreme cramps and burning on eliminating. Knowing if I went to the emergency room at my local hospital, I would be sent onto a hospital in Fort Worth. Our local hospital is not equipped to handle dialysis patients because they have no dialysis machine or anyone who can do the procedure. I was to be a dialysis at 5:45 AM so decided to wait until I could get there and have them handle it. Dr. Shorie was to be there about the time I was to come off the machine so we waited to see what he said. I needed the dialysis anyway and it was best to keep on schedule. I pretty well knew what it was and he validated my thoughts. I had an infection and he prescribed an antibiotic (Levaquin 250 mg).

It is pretty powerful because it started to work within hours. Monday afternoon I was unable to stand or walk without becoming very dizzy, lightheaded and sick at my stomach. By Tuesday morning, I was feeling much better….human again. He told me to be careful and get a lot of rest for this week. Now this is hard to do at this time of year and there are many places I would rather be than resting. But I am because I want to be stronger for the holidays.

2005-12-08T07:09:00.000-07:00

Not much has changed; I am still on dialysis and receiving blood and platelets. I was able to go for about 2 ½ weeks before receiving transfusions but when I was tested on Monday, they were back down to a dangerous level. The platelets were 11,000 and the hemoglobin was 8.1. I have had no difficulty receiving the transfusions since the time at M. D. Anderson when they tried to give me the blood too quickly and put me into fluid overload…. until Monday. At the end of receiving the two units of blood, I began to have a severe reaction. My throat started swelling to the point I could barely talk to tell them I was having a problem, I was itching all over and was having difficulty breathing. I must have been quite a sight because I was broken out in hives and when someone came into the room, their eyes certainly got bigger. They ordered blood and urine testing-STAT- but that all proved to be o.k. They contacted my doctor and were told to stop before giving me the platelets and give me steroids (Decadron). They were wonderful and someone stayed with me constantly for the duration of my difficult time. Eventually I was able to talk, the itching subsided and the hives went away other than on the inside of my throat. It has taken a couple of days for my throat to clear up. They do not know what caused the problem so I just look at it as another bump in the road.

2005-11-14T10:50:00.000-07:00

The stem cells still have not started working and I must say I am very discouraged. No one seems to know the answer or what to do to get them going. My nephrologist at the dialysis center has upped the Epogen I am receiving each dialysis session to 45,000 so I am receiving 135,000 each week. This may be the max but he wanted to try this to see if it would help jump-start the stem cells.

When I was in to have my blood tested, my oncologist (Dr. Ray Page) wanted to see me and we visited about my situation. He is at a loss as what to do, just like all the doctors. One thing he told me that is a little disturbing is that over an extended period of time of receiving transfusions your body begins to build a resistance to them. It is like receiving many things for too long, you build an immunity to it. Then each time I receive the blood and platelets, there will be less and less reaction for my system. But there is no other answer so I will continue to receive them.

My fingernails have finally gotten back to normal. When I returned from Houston, they were long and lovely but as they continued to grow there was a “ridge” and this was caused from the trauma I had been through. They now look normal but it has taken this long for the “ridge” to grow out and be cut off. This is normal for anyone who experiences major trauma but they will get back to normal over a period of time. A minor thing but kind of interesting.

2005-10-20T22:40:00.000-07:00

Everything has been pretty much status quo – dialysis MWF and still getting transfusions of packed red blood cells and platelets. I tried to stretch it to long this last time and really got into a weakened state. My platelets were 11,000 and they have been that low and lower before but my hemoglobin was 6.6 and I think that is as low as I remember it being. I knew it was low because of how my heart was pounding and laboring, my head felt like it was splitting and I felt so very weak. I received the blood and platelets and they have helped how I feel.

We went to another vascular surgeon today, Dr. Hudgens in Fort Worth. We were impressed with him and felt he gave us straight talk and answered our questions. He had received the vein mapping that was done at Baylor/All Saints and after he studied those, felt my veins are so small it will be difficult to install a fistula close to my wrist area and a graft would have to be installed further up my arm. He told me I could not use it for about three weeks and would have to use the catheter. I knew this so it was not a surprise. He told me that catheters, grafts and fistulas all can become infected and just because I changed did not mean the risk of infection would be lessened. He said in a normal situation, the installation would be a day surgery but mine would be more involved. I told him that nothing was ever normal or easy with me. With my platelets and hemoglobin being so low, I would have to go in the day before and be “juiced-up” on platelets and blood then he would keep me at least a day after to keep an eye on my situation.

He said as long as my stem cells stay in the infant stage and do not manufacture platelets and blood, I would have difficulty with the graft. The graft would be a plastic tube inserted and wrapped around inside my arm with a plastic “cap” at the surface that serves as the access point for the needles during dialysis. After dialysis is over and the needles are removed, the bleeding must be stopped with pressure applied to that area. It could be very dangerous for me and I would be taking a chance on uncontrolled bleeding. The catheter I presently have has cut-offs and caps that do not allow bleeding. As long as the catheter is kept clean and continues to work, it may be the best answer for me. I do not allow blood draws through the catheter and only have direct sticks for blood testing and crosschecking. It can only take place in my left arm since I am left-handed my right arm must be kept as scar proof as possible because if I do have anything installed in my arm, it will have to be in the right arm.

I asked him if he could install another catheter if the present one failed and he said “yes.” There is always a risk that scar tissue would make it difficult but it certainly is in the realm of possibility.

I have chosen to wait on the installation for a while because of the possible downside of going on with the surgery. He said he has patients who have used the same catheter for as long as three or four years. I was dreading the surgery and I know the other dialysis patients are very restricted during dialysis because the arm must be taped down and they are unable to move around as much as I do. I cannot get up and move around but I sure do wiggle around in the recliner during the three hours. I read, listen to music through my headphones, work crossword puzzles, sleep, etc during that period of time. The techs and nurses tease me that sometimes my alarm goes off because I am also doing my exercises during that time.

Thanks for your interest. It is really discouraging that the stem cells have not started working because it has been eight months. I am going to contact Dr. Anderlini, the head of my transplant team at M. D. Anderson, and ask him if he has any ideas of where we go from here.

2005-10-06T07:21:00.000-07:00

Plans changed, not unusual, I received a letter on Saturday that Dr. Stroman was no longer accepting Blue Cross/Blue Shield Insurance so I called on Monday morning to see if this included Blue Cross/Blue Shield Health Select and was told it did but I could still see Dr. Stroman but it would be out-of-network. I said no way and cancelled the appointment. It made me a bit unhappy with his office because I had only made the appointment on Thursday and received the letter on Saturday. I should have been informed at that time and I would not have made the appointment and would have started looking for another surgeon. I told the dialysis center and they are going to find another doctor to install the fistula. It is just disgusting because I have wasted more time with this latest situation. Oh well, it will take place when it takes place.

This week has been a good one and I enjoy those because the last two or three weeks have not been so great. Take care and I hope to move forward with the fistula installation soon.

2005-09-30T03:16:00.000-07:00

My stem cells have not started working so I am still receiving packed red blood cells and platelets each week. Last week I was given platelets because mine were only 9,000 but my hemoglobin was borderline so they did not order a blood transfusion. I did not feel well and felt the blood would help but they wanted to let it ride for a week. I began feeling weaker and knew my heart was laboring and this is a sign that my hemoglobin is becoming dangerously low and it was (7.6). As usual after I am “juiced-up” on blood, I feel quite good. I always work and prowl around the house most of the nights when I feel good and this is to make up for the time when I feel so rotten and have to rest most of the time. I can really get a lot done but stay away from where Arthur and T. R. (our 13-year old dachshund) are sleeping.

I have an appointment next Monday (October 3rd) with Dr. Stroman who will be installing my fistula. My doctors are becoming more concerned with the presence of my catheter and the fact that its end tubing is located so very close to my heart. It is straining an already weakened heart. The vein mapping has already been done and Dr. Stroman had wanted to wait until my platelet count improved but that is not happening so we need to proceed with the installation of the fistula. They will probably put me in the hospital the day before and give me platelets, then do the surgery, then keep me until they are sure there is no bleeding from the procedure.

Dialysis again this morning…same old same old.

2005-09-14T20:14:00.000-07:00

Sorry I have not written sooner but not a great deal has changed. I am still going to dialysis three times a week and getting blood and platelets regularly. The stem cells still have not started to work and that is disappointing. If they would start working, I would get at least a day and one-half of each week in my life back and not have to go to the hospital for the transfusions.

We went to Dallas to see Dr. Fenves, my nephrologist, August 30th for a regular visit. I asked him if I would ever be a candidate for a kidney transplant because of my cancer, amyloidosis and heart murmur. He said that I could but first the stem cells would have to start working and I would have to make my own red cells and platelets and be free of transfusions.

I hate to think of another major medical ordeal but I am afraid that is the only way I will ever get off dialysis. The desire to get off dialysis was heightened this last Saturday when we attended the Amyloidosis Support Group of Texas meeting in Dallas. I am coordinator for the group and work with another member, Maurice, who arranged for a wonderful program on that day. It was about living donor kidney transplants. Dr. Levy with Baylor All Saints in Fort Worth was the speaker and he also covered the problems of being of dialysis for a long period of time. The prognosis for a long life on dialysis is not very good. It is so hard on the entire system

that it just “wears out” faster. A kidney transplant also has its downside because it can lead to other problems. So, I feel I do not have a great choice.

When we went to the surgeon who will put the fistula in my arm for dialysis, the first thing he said was that my platelets would have to start working and increase in numbers before he would think about doing the surgery. I found that even if I do have a kidney transplant, I would still need the fistula. The fistula is to replace the “temporary/permanent” catheter I now have for dialysis. Dr. Fenves is concerned about the present catheter and how long it has been in place. He wants the fistula installed soon and wants to have it done at Baylor Medical Center in Dallas, if there are further problems.

Things are moving rather slowly and it is hard to deal with at times. Thanks for your interest, your prayers and best wishes.

2005-08-22T11:49:00.000-07:00

I was released from Baylor/All Saints the afternoon of Thursday the 11th and it is good to be home. They would not let me leave until I was fever-free for 24 hours. I must admit I was beginning to think of escape routes if they had not released me because I was very tired of the hospital. The nurses and staff were wonderful but six days is a long time and I had other things I wanted to do. I feel great and dialysis went well this morning.

As A.G. said, the biopsy showed I do not have leukemia and we are thankful for that because one form of cancer is enough to deal with at a time. Add the amyloidosis on top of it all and my plate is pretty full. It did show that the stem cells are there but just taking longer to get to work. It showed I had chemo and have had a great deal of trauma to contend with. Nothing we did not already know other than the absence of leukemia and that is a good thing.

2005-08-09T20:18:00.001-07:00

With regard to La Donna’s 7/28/05 posting where she stated she would have results of her biopsy, we do actually have some good news. She doesn’t have Leukemia. I know with everything else going on with her, this might seem to be a footnote, but we take small victories where we can.

2005-08-07T22:42:00.000-07:00

La Donna is currently at Baylor/All Saint’s in Fort Worth. Her temperature went up to 103.5° Friday night. As it turns out she had a severe kidney infection.

On Monday after dialysis she had a strange feeling when she would go to the bathroom, she got to feeling better and dialysis went well on Wednesday. Thursday morning was a good morning; she decided to work in the yard. About noon both kidneys felt like they had been kicked with a steel-toed boot. She spent the next several hours on the sofa resting.

Friday was dialysis again. When she got there her temperature was about 100.7°. During dialysis they constantly monitor your blood pressure, it was fine. When dialysis is complete, they take another sitting blood pressure and a standing blood pressure. During the standing blood pressure, she became extremely light headed and there was a swishing noise in her ears. They immediately sat her down and put her in a reclining position, because her blood pressure at that time was 70 over 30. Dialysis centers will not allow you to leave if you are driving yourself until your blood pressure registers at least 100, if someone else is driving you it has to register 90 or above.

The rest of the day she became progressively weaker and her condition worsened. About 8:00 PM she knew there were real problems, when Arthur checked her temperature it was 103. Arthur called the dialysis center and they told him to get her to the hospital. When she got to the Emergency Room at Campbell, her temperature was 103.5°. She had bacteria in her kidneys and she had an extreme kidney infection. She was given 3 antibiotics in the ER and sent by ambulance to Baylor/All Saint’s in Fort Worth, arriving at about 11:30 PM.

She was administered another antibiotic and because her hemoglobin was so low, she received two units of blood. Her temperature ranged between 100.5° and 103.1°. They could not get it below 100. About noon Saturday she began feeling better and has progressively improved. Sunday her platelets were down, she received platelets and they did an abdominal CAT scan. She will be in the hospital tomorrow and will have dialysis and two more units of blood.

2005-07-28T21:18:00.000-07:00

I apologize for not entering to the blog for so very long. I am still waiting for the stem cells to start working. I am still receiving platelets each week and blood about every other week. I had the bone marrow biopsy done Tuesday, July 19th and am waiting for the results. One of the tests they do takes a pretty long time for the results to be sent back. Dr. Anderlini and Dr. Page felt this was the best way to find what is going on with my stem cells, the lazy rascals.

My platelets and hemoglobin were both down and I received ten units of platelets and one unit of blood on Monday before the procedure. This helped insure that the bleeding would be controllable and I would not have to experience the same thing I did with the last one in Houston. One thing I was thankful for was I was able to have it done at my local hospital (Campbell Memorial). Dr. Anderlini in Houston, the head of my transplant team, and Dr. Page, my local oncologist, are friends and went through training at M. D. Anderson together. They are very good about discussing my situation and work together with my best interest in mind. Dr. Anderlini said it would be o.k. for me to have it done here since Dr. Page would make the arrangements and would see that everything he wanted was done. Dr. David Brigati did the procedure and all went well. They kept me in recovery for an hour to make sure I would be able to go home without any complications.

Of course, I could not take a bath or remove the bandage for 48 hours. The bandage was a pressure one and was really quite large. I felt like I was wearing a huge wad of material and tape and was sure glad when the 48 hours was up and I could get rid of it. Actually I cheated and removed it and bathed after 46 hours but who’s counting?

I go tomorrow for blood tests and will see how the numbers are doing. I will be glad when the results are back from the biopsy and hopefully they will direct the doctors to what is needed to get the stem cells working. It would be such a relief not having to go in each week and spend a day at the hospital receiving the transfusions. It does get to be trying going to dialysis three days a week and at the doctors and hospital for one or two.

The dialysis is going well and I am now down to three hours on the machine on Monday, Wednesday and Friday. I have asked for two days on the machine each week but they have said that is not a possibility but at least I am down from four hours to three. That is probably as low as they will go with the time. I am home by about 9:20 AM and I told them that is earlier than some people get up. It does give me the rest of the day. I still have to rest after I get home because I am pretty well drained of strength but my recovery time is getting better and that is good.

I will post when I have the results of the biopsy. Thank you for your interest and concern. I have received so many inquiries about what is going on since I have not posted for so long.

2005-06-30T21:23:00.000-07:00

It has been awhile since I have made an entry but not much has changed. The stem cells still are not working and I have to get platelets and blood each week. By the end of the week, the platelet numbers are between 11,000 and 13,000 and my hemoglobin numbers are between 6.7 and 8.0. While I was in the hospital today receiving platelets and blood, another person was there getting platelets and was saying her platelets were low at 45,000. I must say when mine reach 45,000 and stay, I will do a victory dance….I know they need to be higher but 45,000 would be a great start. My local oncologist and the nephrologist at the dialysis center both wanted to know when I would be going back to Houston to see Dr. Anderlini and I told them his office had called wanting to know how I am doing. I called back today and knew what they would say, come back to Houston. I am waiting for them to give me the appointment time. I told them I had been ”hiding” from them. They want to do another bone marrow biopsy and I am not sure what else. Not sure what they can do to jump start the stem cells but guess I will find out. Most of what they do for me is experimental anyway.

2005-06-13T19:53:00.000-07:00

Last Wednesday I had my counts taken and my platelets showed to be 32,000 per microliter and that was encouraging but they wanted to take the counts again on Friday. In less than 48 hours, my numbers had dropped to 12,000 per microliter. I was told to go to the hospital and they would have them ready for me at 8:00 on Saturday morning. I said I had a meeting in Dallas on Saturday and requested they be given on Monday. They said that would not be possible because the risk was too great to wait over the weekend. Back to the hospital on Saturday morning for 10 units of platelets. The normal life of platelets is about five to seven days and this decreases when I am not making my own platelets and receiving them from someone else to about three to five days. Again, thanks to those dear souls who gave the platelets.

Went to dialysis today, as usual, the rest of the day has been one of resting and knowing that tomorrow will be better. It is hot here and that takes a toll on me but as long as I stay out of the sun, I do o.k.

2005-06-08T14:04:00.000-07:00

Not a great deal has changed I am still on dialysis MWF and receiving ten units of platelets each week and two units of blood every other week because my stem cells still have not started working. I asked my local oncologist, Dr. Ray Page, what would happen if the stem cells do not become active. He said they would but we do not know the timeline they will choose. The doctors all tell me that about four months from the time you receive your stem cells is an average for them to become active. They say with me having several problems that mine could easily take longer such as six to eight months. The four-month period since I received my stem cells is up on the 22nd of June. I asked him what happens until they do start working and he said we would continue doing what we are doing now and that is for me to continue receiving platelets and blood. Not a wonderful thought but one I can live with as long as needed.

I have become more and more appreciative of people who will take the time to donate blood and platelets. They have certainly saved many lives and I am able to continue living somewhat of a normal life because of their generosity. Blood takes less time to give and has a longer shelf life than platelets. Donating platelets takes about 90 minutes and they have a shelf life of about five days. Platelets can be given more often than blood because they are taken from the blood. You are connected to a machine that receives the blood and removes the platelets and the remainder of the blood is returned to you. People with low platelet counts should be very careful because they must always be aware that their clotting ability is very restricted. When we cut or injure ourselves in someway, we can bleed quite freely.

I am gaining strength and am able to work in my beloved gardens. I gathered a beautiful arrangement of hydrangeas today for us to enjoy. Nothing can compare to being in the garden and listening to the birds, seeing the squirrels romp and play and watching the butterflies flit from flower to flower. I must work when it is early in the morning and quit when it becomes too hot because of the sun. I take blood pressure medication and when the sun hits my skin, it feels like little pin pricks all over. My yards are very shady and this helps when I am outside.

2005-05-23T20:23:00.000-07:00

After dialysis last Friday, I saw my family doctor to ask some questions about some problems I had been having. The problems all seem to stem from my low platelet count. I did not realize how the low count could affect so many parts of your body. The itching on my back, the “bumps” on my legs and arms that are filled with blood and appear for a few days then flatten and leave bruises and the blood in my stool. He ordered a blood specimen to see what my numbers were and sure enough, the platelets were 11,000. He ordered 10 units of platelets for transfusion on Saturday morning.

The body is an amazing machine and if it has defective parts, it certainly can derail the entire machine.

Today after dialysis, the doctor at the Center met with me and reviewed my case. I asked him if he thought I would go of dialysis in the future. He said he would not say “never” but the possibility of going off dialysis completely was very slim. He said the kidneys are filled with filters and when they are damaged or destroyed, they do not repair themselves and lose various amounts of their effectiveness. Since I also have Amyloidosis damaging my kidneys, I need the dialysis to remove the toxins that I am unable to remove myself. He did say some patients have shorter times on the machine or have dialysis two days a week instead of three. They have shortened my time from four hours to three and one-half. I know that may not sound like much but when you have been sitting there for that long, even a half hour less on the machine is a good thing.

2005-05-18T23:29:00.000-07:00

Sorry it has been so long since I have posted. The transfusions went well last week. I was in the day surgery area of the hospital for seven hours. The transfusions took six hours and you are required to stay an extra hour so they can check you and make sure you are doing well. I appreciate this because there have been times when I needed this period to make sure all has gone well.

On Monday the 16th, we went to see Dr. Stroman, the doctor who will install the AVF Arteriovenous Fistula or AVG Arteriovenous Graft. He said he does a different method that uses my veins and arteries and does not involve any plastic tubing. He said it cuts down on infections and lasts longer with fewer problems. He will order a sonogram of my arm and will determine the best area for the placement. When we told him about my platelet numbers, he said he would not do the surgery until those numbers come up. He said it is not an emergency and we have time to wait until my numbers are better. If things change, he will order units of platelets one day and do the surgery the next day.

June 22nd will mark four months since I received my stem cells back and this is the normal period of time it takes for them to become active. It will be wonderful if mine mature and take on their task by that time.

I am continuing with dialysis on Monday, Wednesday and Friday each week. I still hope that as things get better, I can come off dialysis in the future. There are some great people who go to the dialysis center and they have accepted me into their “family” with open arms. A common problem makes for good friends.

2005-05-10T00:41:00.000-07:00

Well the elation on the possibility that my stem cells were finally working did not last long. My local oncologist wanted to have blood drawn on Monday to see how they were holding up. The platelets have dropped to 9,000 from 23,000 last Wednesday and the hemoglobin has dropped to 7.6 from 8.5. He has ordered 2 units of blood and 10 units of platelets to be given later today. We went for pre check-in and banding yesterday and will be at the hospital at 7:00 this morning for the transfusions. It will take most of the day and I should be out by 2 or 3, if all goes well. Our local hospital has to order the units from Carter Blood Bank but it does not take long for this, just overnight.

2005-05-05T22:36:00.000-07:00

We went to Dr. Ray Page, my local oncologist, yesterday to get the weekly blood testing started and to update him on what had happened while we were in Houston. M. D. Anderson sends him information and we supplied him with our personal information. It was a good visit but the best thing was he was encouraged with my numbers. The testing for Thursday showed that my platelets were at 23,000. I have not had platelets for a week and before they would dip to about 13, 000 in a week. My hemoglobin was 8.5 and it has been two weeks since I have had blood so it seems to be holding. I go back on Monday to have it checked again, these numbers will serve as a baseline for the future.

Arthur and I have gotten to thinking that if anything can go wrong it will with us. I said I had to have another bone marrow biopsy before we left Houston. We did and I always have it done under sedation because it is very painful. The first one I had was not under sedation so I learned not to do that again. All went well, we thought, but when we arrived at the Aphersis Clinic for an infusion for pneumonia the nurse noticed that I was bleeding. Sure enough my platelets were so low that my blood was not clotting. She was not happy that I had not been checked more closely before they sent me from the unit where I had the biopsy done. She cleaned it up and put a great deal of gauze on the area and told me to sit so I could apply pressure on it. The biopsy is taken in the hip area about the level of the tailbone. It bled through again and then a tech was sent to get it stopped. He cleaned up the area and applied pressure on it for about 10 minutes. He said applying pressure on a wound like this is very important. Arthur acted as his assistant and opened the materials he needed. I had lost so much blood that I was given a unit of platelets and a platelet binder. Then finally I received the infusion for prevention of pneumonia. With all of this, we were in the hospital for another full day and we thought we would be back in the apartment by noon.

Had the day off today and that was nice. I still have the energy of a slug so did very little today.

2005-05-03T20:19:00.000-07:00

I had dialysis yesterday and all went well. It really drains me for the rest of the day and I am unable to do much of anything but rest. My weight loss stands at 30 pounds and my appetite is nonexistent. I cannot think of anything that I want to eat but Arthur is so good about trying to find foods that might appeal to me. He encourages me while I am eating by saying eat at least 3 more bites, now you have to eat something, you are doing a great job or you can stop, if you do not want anymore, (reminds me of working with a child). He is so patient and such a wonderful caregiver. He is back at work and they are certainly glad to have him back in his office.

I talked to the nurse at the dialysis center about having my permanent/temporary catheter replaced with an Arteriovenous Fistula (AVF). This is located in the area of the arm, above the wrist and below the elbow. My arm may be too small and if so, I will receive an Arteriovenous Graft (AVG), located in the same area as the AVF. The nurse (Pat) is starting the process of setting this up. When the Fistula or Graft is inserted, it will take 4 to 6 weeks for it to heal in before it can be used. They will continue to use the catheter I have and will remove it when the new one I ready to be used.

We went to my nephrologist in Dallas, Dr. Andrew Fenves, today and brought him up-to-date on our time in Houston. He kindly said he was glad it was over and I was getting better. I took him the results of the blood work from M. D. Anderson and he is encouraged by the creatinine numbers and feels there may be a chance that I can go off dialysis in the future. No promises from anyone about this possibility but we feel there is a chance. It would be a wonderful thing if this could happen.

Thanks to A.G. for assisting me with this blog. He has been great in taking over when I am unable to do so. Thank you for your notes, e-mails, calls, prayers and well wishes. I appreciate you all more than you can ever know. It has meant so much to my family and to me.

2005-05-01T20:55:00.000-07:00

La Donna and Arthur are back in Weatherford. They arrived Friday. Robert and I spent Saturday and Sunday with them. La Donna is of course not ready to start training for the White Rock Marathon, but she is stronger than I though she would be. We all went to church Sunday and then went out to eat. After Robert and I left, they went grocery shopping since they had not done so in about three months. La Donna will begin dialysis and blood work in Weatherford now.

La Donna’s computer in up-and-running, but making it through the day is currently of greater importance than posting. She will be posting soon. Until then, I would like to say thank you to our family, friends, and extended community we have met through this blog. You are and will always be in our thoughts and prayers.

2005-04-28T23:54:00.000-07:00

Nothing seems to be easy during this trip. We went today for the bone marrow biopsy and aspiration. I had this done with sedation and it went well. Since I had nothing to eat before the procedure, we stopped at the cafeteria and I had a bowl of cereal. We proceeded to the Asperses Clinic and as I started to move to the recliner, the nurse said; “ what do we have here” and I could feel something wet and cold. Sure enough the area where they had done the procedure was bleeding rather badly. It took several minutes to clean it up and for it to stop bleeding.

They took blood samples, tested it and my platelets were only 16. I was given Zofran (to keep my stomach “settled down”) then I was given the Pentamidine infusion. Since my platelets were so low, I was given Benadryl and then a transfusion of platelets. I was also given a transfusion of Desmopressin (a platelet binder). Instead of getting back to the apartment this morning, we got back about 3:30 but a least the bleeding has stopped.

We have dialysis in the morning at 6:30 and should be checking out of the apartment around 2:00. We are anxious to get home but with our luck, who knows.

2005-04-26T20:20:00.000-07:00

Thanks to A.G. for the update on our situation.

The doctors were pleased with my progress, other than the fact that my platelets and hemoglobin were not numbers that were increasing to the level I need. April 21st

I had an appointment at M D. Anderson to have my numbers checked. Dr. Anderlini’s Physician Practitioner (Jill) came into the room and first thing she said was, “You have no blood.”

She was right because my hemoglobin was only 6.7 (normal is 12.0-16.2) my platelets were still very low. They ordered 2 units of blood one of platelets and a unit of potassium. The platelets and potassium were given with no problem then, I received Tylenol to help my body accept the blood. The first unit was almost complete when I began to feel like I was smoothing. It became worse and I told Arthur I could not breath. The nurses’ station was across the hall from the room we were in and instantly I had about five men and women from the medical staff in the room. They ended the transfusion and started giving medications to get rid of the reactions. I was monitored there and they found my blood pressure to be 190/94. The diagnosis was that the blood was given too fast and my body could not handle it at that rate. I have received several units of blood but this was the first time I had a reaction.

Later in the evening, we were sent to the Emergency Room because doctors are in that 24/7. I was monitored throughout the evening and given an E-Ray of my chest. They found a great deal of fluid in my chest and in my lungs. At 2:00 AM, I was sent to ICU for dialysis. At 6:30 AM (the end of the dialysis), we were sent back to ER. Because the hospital was so full, we remained there for a day and a half. At 1:00 AM, were finally sent to a room. I was in dialysis three times to get rid of the fluid.

We were allowed to leave the hospital and return to the Houston apartment on Monday the 25th.

We returned to the hospital this morning and found the hemoglobin had risen to 12.1-thanks to the units of blood; my platelets are 25-up from 23. We hope this indicates that my body is starting to make them on its own.

Another bone marrow biopsy must be done before Dr. Anderlini can release me to go home. We are to have this done on Thursday. We will also have the infusion of Pentamidine for protection from pneumonia on Thursday. This is all in preparation for the release and our return home—our real home, Weatherford. We are excited about this; it has been a long time since January 19th.

2005-04-25T02:09:00.000-07:00

La Donna and Arthur arrived back in Houston Wednesday; La Donna received platelets and blood Thursday. She had a bad reaction after receiving the blood. Her blood pressure shot up to very high levels. She has spent the weekend in the hospital. As of Friday she was actually doing better.

Hopefully she will going back able to leave the hospital tomorrow and go back to the apartment in Houston.

2005-04-14T19:51:00.000-07:00

We were back at M. D. Anderson today and my platelets were back to 13,000. My hemoglobin is holding and rising a little so they did not give me blood. Jill, the P A, said she hates to give me blood because it looks like I am trying to take care of it myself. My red blood cells are still quite low and I am to self inject Procrit twice a week until the numbers are better.

Jill is helping get things set up for us so we can go home. The projected date is April 30th and that will be none to soon for us. If all goes well and everything goes well, we only have a couple of weeks left here. This time will be busy because we must get the catheter changed and make sure it is healing, have another infusion of Pentamidine (for PCP-pneumonia) this is given monthly for six months but I can have this done at home. We must also finish the paperwork for transfer to a dialysis clinic at home and my nephrologist in Dallas needs to be brought more actively back into the loop. There are some other things that need to be taken care of to insure a smooth transition in my treatment.

We are going home this weekend because Arthur wants to catch up on yard work and we need to turn the sprinklers on. I plan on sitting at home and enjoying myself and seeing our little dog, T. R. I will post again next Tuesday.

We finally feel there is an end to this and it is not far off.

2005-04-13T16:51:00.000-07:00

We went to M. D. Anderson yesterday with the hopes that my platelets were holding, they were not. They had dropped from 42,000 on Sunday to 26,000 today. I asked why they have been on such a roller coaster ride (I knew they would go up after I received platelets) what I wanted to know is why they drop so fast in such a short period of time. The P. A. said it is because my system is not making any. She said the stem cells are not working the way they should (we had been told it could take four months before they were doing their job). She said in a normal person’s system they realize when it is time to make more platelets and they take care of business but mine are like babies that are having to learn all over again what to do. I have been my stem cells biggest cheerleader and encouraging them to get to work but they seem to not be listening.

While at the dialysis clinic today, I asked for them to set up an appointment for the removal of the temporary/permanent catheter that is at my neck and having the permanent one put in my arm. They have it set up for April 26th at Hermann Clinic. This will have to be done before we can be released to come home. We are hoping to be home at the end of April…now if we can just get everyone down here to agree with us. It has been a long time since the 19th of January and it will be good to go home.

2005-04-11T17:52:00.000-07:00

I said I would report about being in the hospital after leaving ICU but I have been keeping you up-to-date on what is happening in real time. This is an entry on the last few days in the hospital.

I returned to the 11th floor at M. D. Anderson and the next week was spent gaining strength and rather routine. I had dialysis, received platelets, blood and medications. They were stabilizing my numbers and watching my progress in preparation for leaving the hospital. I fought nausea and tried to eat but often it did not set well on my stomach; this is even with being given medication through a drip to settle my system. A dietitian, physical therapist, an occupational therapist and the team of doctors and physician’s assistants saw me daily. My nurses and everyone on the 11th floor were great to my family and to me. They were always encouraging me and cheering me on when I would go for my daily walks. The walks would seem like short ones to most people but to me they seemed like a marathon.

Since I had been a bit “active” in ICU, I had a device in my bed that would play very loudly: She’ll Be Coming Around the Mountain” when it felt me getting out of bed. Arthur and Mark became very quick footed to turn it off before it bothered everyone on the floor. No matter how fast they were the nurses always checked to see if they needed help. The last two days in the hospital I promised them I would be really good if they would remove the device. I called them slats because that was what they looked like. The nurse agreed with me and it was removed. I was very relieved because it was like loosing a yoke.

That is briefly what took place the last week.

2005-04-10T17:26:00.000-07:00

Arthur is back and Mark has gone home to his family. I appreciate him staying with me last week but his family is excited about his return home.

We went to the hospital for blood work this morning and the results were very encouraging, for a change. My platelets were 42,000-up from 13,000; my hemoglobin is 8.5-up from 8.3; white blood cell count is 3.1-down from 13.8 (normal is 4.1-10.9). I will be back at the hospital Tuesday and find out if I have been able to maintain that level. My body also needs to start making platelets and that will help stabilize the number as well as increase it to the level I need to be able to be released and go home.

2005-04-08T23:49:00.000-07:00

This morning was dialysis and the doctor and dietitian were there and met with me while I was on the machine. The doctor told me while I am on the machine I am getting 60,000 units/mi of Epogen weekly. This is the same as Procrit so I do not have to self inject that while I am on dialysis and this is ok with me.

I do not receive the prescribed units of anything before I am given something to help my system accept the “intruders” that it is about to receive. Before the Pentamidine, I received Zofran to help avoid nausea and before the platelets and blood, I received Tylenol and Benadryl to relax me and assist the acceptance.

I am having bathroom problems and asked the doctor what he would recommend to help with this situation. I do not take anything unless I talk to my doctors first. He recommended Dulcolax and also a stool softener.

The dietitian told me my protein level is low and I need to add more protein to my diet. I do not eat a great deal but do eat each meal. I used to be a vegetarian but since last fall when I became so ill and went to the emergency room with dehydration, I have been eating meats. Everything tasted sweet or it had a metallic taste and protein was about the only thing I could eat. I am eating about all the meat I can deal with so I will add more dairy products. Eggs, milk and cheese are good sources but being on a low sodium diet it is hard to find a cheese that I can eat. She recommended a brand called Alpine Lace and said it has some low sodium cheeses in its line. I have seen it before and will try to find it again.

Arthur comes back tomorrow and Mark will fly out on Sunday. Mark is going to an Astros ballgame tomorrow night (Saturday) and believe me he needs a fun night out after being the caregiver this week. Mark has been a great caregiver this week but I know he is ready to get back to his family and they are ready for him to get home. I had appointments at M. D. Anderson yesterday and had blood work done. The numbers were very disappointing: platelets 13, hemoglobin 8.3 both going back down. They gave me a unit of both blood and platelets and I am to go back Sunday morning for blood testing and will wait for the results. If the platelets are not above 20, they will consider giving me another unit. Since my immune system is not good, they gave me an infusion of Pentamidine to help keep me from getting PCP (pneumonia). The infusion took two hours in the Aphersis Clinic at 9:00 a.m. After seeing Dr. Anderlini, Jill and Jill in his office, we found the bad news about the blood work results. Our appointment for receiving the platelets and blood was at 4:30 so we did not arrive back at the apartment until 9:30 last night. It was a late night because we knew we would be up at 4:50 to get ready for the 6:30 appointment at dialysis this morning.