Dialysis yesterday was a downer. I made it through just fine until the last few minutes. I started having leg cramps and then became very ill. The nausea was terrible, I started throwing up, and my blood pressure was on a roller coaster ride. I was taken of the machine and kept a wet towel on my face and neck. I could not sit up and for sure I could not stand. They gave me saline and when this did not help, they gave me a shot of a medicine that was to help with the nausea. These are given to me through the line that they use for the dialysis. The nausea did not respond and I continued to feel very weak and extremely ill. I did not know it but I passed out for a few seconds and was told this when they said the doctor wanted me to go to the hospital by way of ambulance. I told them I felt I could go home but they said “NOT” because I had fainted and was still having multiple problems.

They called 911 and soon the ambulance arrived. My dialysis center is located only a few blocks from the hospital but I must admit it seemed like forever. I became extremely ill and threw up again. We arrived at the hospital and after checking in and talking to the doctor who was at the emergency room, I had an X-ray, EKG and other tests. Everything was really o.k. and the conclusion was that too much fluid was taken off in too short of time. They are talking about having me on the machines for a longer period of time. Instead of the three hours, maybe it will be increased to 3 ½ or 4 hours. This will put much less stress on my heart and system. I will find out tomorrow at dialysis. I rested the rest of yesterday and feel better today.

Some good news that I received while at the hospital was that my numbers are not bad. My hemoglobin was 9.8 and my platelets are 27,000. This is pretty exciting since I have not had a transfusion in a week. I hope this trend continues. It will be year February 22 since I received my stem cells back and maybe they are gearing up to give me a birthday surprise. I now have two birthdays: one my actual birthday and the day I received my stem cells back. M. D. Anderson considers these both “official” birthdays.

Yesterday at dialysis was the first time my fingers started to draw like my toes and feet have done. Kind of a funny feeling to have your extremities decide to go in directions of their own choosing. They really do not contort but just draw because of the fluids that are being taken from my body.

My blood pressure fluctuated greatly yesterday at dialysis. It was measured at one time at 79/58 then went to 197/108. It settled down to an acceptable rate before I left. They asked me to come back for another count that afternoon but I had meetings and said it would not be possible. I asked them if I got a home unit and checked it myself would that be acceptable. They said yes and to keep an eye on it daily. It is not uncommon for me to become very dizzy and lightheaded when I get up or exert myself. I purchased a “deluxe” model but it is very easy to use so I guess I am set. They asked me to bring it with me Monday to calibrate it with theirs. I am going to ask them…now what? I can see what my blood pressure is so what should I do and when should I do it. Is just sitting or lying down sufficient? In reality, I could have done that without a monitor but I guess it is good to have “a new toy” once in awhile.

We had a wonderful weekend as a family and it was a great time with the best family around.

After dialysis, Dr. Shorie made his visit for this week. The first thing he asked me was when I was going to get blood. I told him I was to go in this afternoon for testing and was sure they would order it for tomorrow. I wanted to wait until Wednesday because of prior commitments tomorrow but he said absolutely not. He has written orders that I have taken to my oncologist stating that I am to receive transfusions when my hemoglobin drops below 9 and it is to remain at 9 or above. He said people with dialysis also have heart involvement and when the hemoglobin drops too low, the heart is made to work overtime to compensate. Another words, it is trying to do its job but it cannot and it just wears itself out trying. He said when my hemoglobin drops then I am a walking candidate for heart failure. When it was tested today, it was 7.4 and the platelets are 13. I am to go into the hospital at 8:00 in the morning for transfusions. When you are on dialysis, you are a different breed.

I know after the transfusions, I will feel better and have more pep.

I also received the results of my Free Kappa Light Chain and Free Lambda Light Chain with Kappa/Lambda ratio. I know this is something new I am throwing out to you and will study more about the results and report it in terms we all can understand. Sometimes it takes me awhile to understand it well enough to share the information.

Yesterday was my one-year anniversary on the start of this journey. We left for Houston on the 19th of January 2005. I am not sure I would have gone through with it had I known what was ahead. Then on the other hand, I might not be here had I not had the Stem Cell Transplant. Dr. Anderlini said I would walk through hell and he was right. I know they have done everything they could for me and are at a loss of what to do to make the stem cells start working.

I have not had a transfusion since Tuesday before Christmas and my numbers have been holding: hemoglobin 8.5 and platelets 16,000. When I went in for testing on Wednesday, my numbers had not changed and I was quite surprised because I feel pretty tough. I am weak, my breathing is labored and my heart is laboring more than it should. When it is like this, I can hear the pounding in my ears and at times I can hear “cricket sounds” and become dizzy when I stand-up.

When I was at dialysis this morning, I was told that my hemoglobin was 7.7. It was taken on the same day the other lab did the test so there is quite a difference. The way I feel makes me think the 7.7 is closer to the correct number.

We are going for our youngest grandson’s first communion on Sunday so this weekend will be a busy and wonderful one for us. We will go to Comanche where our son is an Episcopal priest at St. Matthews and Trinity in Dublin. It will be a special time for an uncle to give his nephew his first communion. Robert lives in Flower Mound but will be at Comanche for this event.

I will go in for testing again on Monday and will be anxious to see what the results are on that day. Thank you for traveling this road with me this past year. Your support, prayers and best wishes have made it much smoother for Arthur and me.

Almost a month since I have written in my blog and not much has changed other than I know I have less energy and seem to be weaker and weaker. Still able to do much that I want to but have to rest more often. That is hard to do and makes me unhappy with myself but I have no other choice.
The last time I was checked my platelets were lower than they had ever been (8,000) but my hemoglobin had not dropped below 8.2. That is low but mine has been much lower. Transfusions got me through Christmas and New Year’s and had great holidays. Will go back Monday to be checked again and am sure there will be a need for transfusions but will not be able to have them until Wednesday because Tuesday is full of meetings and other things.

If you are not familiar with dialysis, I will try to describe about it in some of the postings. It is very hard on the body especially the heart because it makes a great deal of demands on the heart each session. My blood pressure will fluctuate dramatically. It has gone from 210/97 at the highest to 57//34 at the lowest and those are dangerous extremes and shows why it is so hard on the heart. I also have painful muscle spasms during dialysis but they have begun to last after the treatments. They are uncontrollable and if they did not hurt so badly, it might be funny to see the toes and feet draw and turn under in ways that I cannot do on my own. It is like they have a mind of their own. Then the leg spasms are like “Charley-horses” and have become so bad that the only way to get them to stop is to stand and rub the muscles. When they become so bad at dialysis, they will turn off the machine for a period of time and give me saline until I can again go back on the machine and finish the treatment.

Best wishes to each of you for a wonderful 2006!