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.

- 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.

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.

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.

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.

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.

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.

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.

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..

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.

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.

– 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.

– 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.

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!!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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

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.

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.

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.