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.

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.