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.

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.

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.

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.

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.

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.