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.