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.

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.

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.

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.

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.

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.

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.

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.

On Wednesday the 23rd of March, we returned to the hospital for blood work and to check my temporary/permanent catheter that had been installed the day before at Memorial Hermann Hospital. It had bled a great deal and the dressing was changed. The long line catheter that had been put in my right arm in ICU was removed.

Thursday was a much-needed day off and Arthur and I enjoyed the day but the bleeding of the catheter continued. I knew I was losing way too much blood because the catheter area would break and here came the blood. Then my right knee, where I had fainted and fallen, began to bleed and we could not get it to stop for several hours. At times my nose would start bleeding. So, as you can see, I was having a major problem and was growing weaker.

Friday, March 25th was my first day at the dialysis center that was recommended to us. My creatinine serum levels indicate the problems with my kidneys. Normal is 0.7-1.4 and mine has been as high as 8.7. Today my numbers indicated the creatinine level is 2.4 and this is the lowest it has been in a very long time.

The dialysis takes four hours and counting the time it takes to hook you up and then to take you off at the end, the time is about 4 ½ hours. We get there at 6:15 AM and are finished about 10:45-11:00 AM. It does get to be a long and boring time; they do provide individual TVs for each chair and I can read, do crossword puzzles and of course…sleep. We are hoping to get the days down to two per week but the doctor at the dialysis center said that two days a week would put too much of a strain on the body. On the basis of my blood work that is done at the dialysis center, the decision will be made but it does not sound like the days will change anytime soon. I am always curious about the machines and the treatments I am having and asked how many times my blood went through the machine. I was told in the four-hour period, it would circulate through the machine about 86 times. Its purpose is to do what my kidneys are unable to do at this time. My kidneys are acting and I cannot really tell much difference than before all this started. This is encouraging to me. My days for dialysis at this time are Monday, Wednesday and Friday. My kidneys were in worse shape than they had thought and I had less than 30% output.

Tuesday the 29th we returned to M. D. Anderson to find out what the next step was to be. I had blood work and my numbers were not good. Examples of the numbers are: white blood cell count 3.0 (normal is 4.1-10.0), red blood cell count 2.88 (normal is 4.00-5.50), hemoglobin 8.8 (normal is 12.0-16.2), platelet volume 9-critical (normal is 140-440). The dreadful platelet count was the reason of the excessive bleeding. Dr. Anderlini told us that my platelet count must reach and stabilize at 80 so I have a way to go. They are giving me platelets and blood to help jumpstart my system. Today, April 5th, the numbers are: white blood count 2.6, red blood count 2.88, hemoglobin 9.0, and platelet volume count 21. The low hemoglobin is a major reason I am light headed so they are giving me blood occasionally to help bring this up.

A.G. (our oldest son) came down last Friday and reported for duty so Arthur could go home and take care of several things and go to work this week. A. G. left on Sunday afternoon and Mark (our youngest son) came in Sunday evening and will stay until next Sunday morning, when Arthur returns. It is great having them here and I know they had to rearrange their lives to be able to be here but it does give Arthur some time away and he can get caught up on things that need his attention.

Our days now are dialysis-MWF and M. D. Anderson-TTh and sometimes on Sunday so there goes the week.