Saturday, April 30, 2011

In the continuing attempt to give a version of my medical history so that we don't have to "release" the volumes of information in some archive room of the Cleveland Clinic, and more importantly give perspective on why I'm on dialysis in 2011 and am awaiting another kidney transplant.

At last entry we were approaching the fall of 1983, I was twelve years old, and my first transplanted kidney, given to me by my mother, was in full blown rejection. Things had been stabilized to a point where I was able to start school in September. Even though my physical state of affairs, not to mention my mental/emotional state of affairs, was precarious. Starting Junior High in a new school, the largest junior high in the country at that time with over 1500 students in two grades was overwhelming. I was just around four feet tall, and had blown up to a Wizard of Oz like dwarfish appearance because of the massive doses of predisone I was on to keep the rejection at bay, which was uncomfortable for me and others who saw me as a bit of a carnival sideshow. I was doing well with grades however, but not feeling well as my transplanted kidney continued to go downhill.

After a couple of months things were getting pretty bad. I had extreme exhaustion, and could no longer make it through a full day of school. Dialysis was planned, due to the fact that a new donor kidney had not be located yet. It wasn't all bad news in that much of extended family, and a few non relatives tested to be donors, and from that process there was hope, as well as real progress in locating a new kidney. However, time was not a luxury, as the end stages of the rejection took hold and I found myself very sick. To complicate matters further, we were finding very difficult to create a viable access site for the dialysis I needed to survive. Things all came to head around Thanksgiving when I literally could not go five minutes without sleeping, was just plain sick all the time, and found myself in the Cleveland Clinic with one failed catheter (that had come out shortly after being inserted, leaving the little blood I had left in my body all over the hospital bed), and no way of dialyzing my little body with poor veins.

On a metal examining table in the middle of the night with some doctors and other staff trying to put a new catheter needle in my groin, as a last resort. It remains to this day one the seminal memories of my life, as a moment frozen in time, when the suffering really did, for a time, seem to be too much, and I truly wondered whether I was going to make it through it all. My father telling the doctors to please listen to me because I needed a moment to stop screaming. Nothing was assured, and hope was really not part of the equation. Even though my donor had been identified, for several reasons, the transplant was not assured, and still not right around the corner, and my little body was really taking a battering we were not sure it could handle.

We made it through that night and I did get dialysis through the groin, even though it was painful and awkward. But better news was starting to come. My aunt was identified as donor, and she gave me a much needed blood transfusion, and we were putting together a time-table for a transplant in another month or so. Oh, and they were able to put a more comfortable, and durable catheter into my chest to last until the transplant time. Yes, even though things were really bad, I had made it through the short term suffering, and was about to, even though we couldn't see it that December, embark on a whole new life.

Next 1984, Transplant, new challenges, and a beginning.

Friday, April 29, 2011

So I guess its a theme this week. Mistakes, in a funny turn, mine. Overslept, by an hour and half, and didn't hear any of the attempted wake calls either. Missed an hour of dialysis, but staff was surprisingly forgiving. I get extremely mad at myself for being even mildly irresponsible. I can be intolerant of my own shortcomings. Even little mistakes no one else really cares about. I got my dialysis, shortened by an hour, but in the end health prevailed.

Thursday, April 28, 2011

Just had a terrific workout. Three miles on the bike, three on the treadmill, and some chest and triceps work. Feel like my hemoglobin may be back up to where it should be considering all the epo I'm getting right now. While I did run and work out the past two weeks, just felt like it was dragging a bit. I can tell by the nature of my workouts, where my hemoglobin numbers are relative to the "normal" they aim for with my epo and dialysis regimen. Right now its probably around 10.5, a little below the target of 11.0 but still OK.

I continue to do my part with good eating (my renal diet restrictions), sensible fluid intake, vitamins, taking my other drugs every day, and all in all, taking life in stride. It all ends up in the same place so I try not to worry about any of it. For now I am doing well and satisfied with the now. Time to fold the piles of clean clothes I've done the past few days.

Wednesday, April 27, 2011

Well sometimes mistakes happen. For those of you familiar with the dialysis process, and how it all works, this should be understood. Every time I go to dialysis, which is three times a week, at 6 a.m., the first thing I, ( and all other patients do) is to weigh in. The reasons are several. Between treatments, when one has no kidney function, or least diminished enough to be a dialysis patient, fluid, in the any form, builds up in the body an is not properly excreted by the kidneys. This fluid buildup is measured by the added weight gain from one's "dry" weight one left at the treatment before (at least that is the goal). A dry weight is the lowest weight of ones body calculated by a number of things, a low but steady blood pressure, cramping, and other general well being issues. Between treatments, from one drinking and taking in other fluids from food, the body retains these fluids and the body weight increases. In my case, because I have no kidneys, and thus make no urine, the buildup can be measured almost to a one to one ratio. Except for my grand cheating with my sweating, that can be substantial, from my running and other physical activity. The weight gain between treatments is regular and steady. I usually gain between two and three kilograms, which is considered normal, each treatment. By having this amount to have taken off during the dialysis process, I don't get any of the side effects of low blood pressure or cramping that can accompany having too much fluid taken off in my three hour treatment.

Now the mistake was a simple one, and so basic, but important. After I weighed in I have the weight written down on a "flow sheet". Basically an intake sheet that takes in some simple information every treatment to log data for that day. That weight, as written down, determines, how much should be taken off for the day. In my case, today, I weighed in at 55.2 kilos, and my dry weight is 53.0 kilos. Simple math takes over and a fluid goal is put manually into the dialysis machine. In this case it should have been 2.2, unfortunately it ended up at 3.2. It wasn't discovered until my treatment was over, because, for the good or the bad, my body just does not have the violent reactions to going below my dry weight right away. I felt a tiny bit of cramping, and my blood pressure was a little low, but nothing where I or the nurses would be on alert. The extra fluid draw was not discovered until I was coming off the machine, and having my needles pulled. I felt okay and went home.

Later on I felt the extra weight more , as the afternoon wore on it was hard to stand for long periods, as I was light headed, and I felt more washed out than usual. I have needed to drink more water to get back to equilibrium. I feel bad, and not just physically, because I am usually very good about double checking these numbers myself while the nurses are putting me on. I am very serious about being aware of my own care and knowing what is going on. Today I just did not think. Shame on me. It will be okay though.

Saturday, April 23, 2011

Ended Friday with a good run, even though all week I have felt a bit burned out. I think my hemoglobin may be a little on the low side, and my muscles have been sore too. Pushing myself this week with weight training, and then cleaning out the garage stretched it all out. My overall health is really good right now, and I do not feel any leftover effects from the pneumonia a couple of months ago. It is really normal to feel some effects a long time after even a "minor" pneumonia.

Besides the blood pressure medications I take every day, this past year or so I have developed, with my doctors guidance, several vitamins and supplements for other needs. Included are D3, helps with calcium and phosphorous and balance and mood stuff, niacin for cardiovascular health as well as Fish Oil, a B complex for energy, and Zinc.

As a dialysis patient, with no kidneys, therefore no kidney function, supplementation of dietary needs becomes important for overall health, especially for me with the increased activity levels I demand on my body with my running, cycling, and just my normal schedule with the family.

The weather here in the Midwest, (Northwest Ohio) has been horrible this spring, and we are just waiting for a normal temperature to start enjoying the outside on a day to day basis. Hopefully that corner has been turned.

Wednesday, April 20, 2011

My doctor did rounds this morning, and everything looked good. He asked if I wanted to be part of a new drug trial for a new form of epogen, the hormone replacement for dialysis patients ( and other persons) who suffer from anemia and low red blood cell production. As I have addressed in earlier entries, epo could very well be one of the more important drug advances in the past twenty-five years. Before the synthesis of this hormone produced naturally through the healthy actions of the kidneys, persons who suffered from anemia were bound to remaining very ill. Not having regular red blood cell production makes a person unable to have a normal energy and exertion level. Gasping for normal breathe, bruising easily, and overall exhaustion; this was your day to day experiences as a dialysis patient prior to the epo regimen. This was my experiences 30 years ago when I was on dialysis in parts of 1983 between transplants. The downside, especially in today's climate is that epo, the form approved and utilized in the United States, is extremely expensive ( one of the most expensive drugs sold) , and can ( at least in the billings I have seen) take up to a third of the overall cost of the dialysis process.

Anyways, this new form of epo, that I have agreed to try out, holds a three fold advantage, according to my doctor, it absorbs better into the system, will not have the side effect of raising long term blood pressure, and it is in an oral form ( no more needles). Finally, and this is speculative, but possible, a cheaper alternative to the current regimen, which can only please the ones paying the dialysis bills, Medicare.

Monday, April 18, 2011

Well, i just could not be more proud of my incredible wife. She ran the Toledo Glass City Half Marathon yesterday, cold cold cold, gusting wind, no real training behind her, and to top it off she was nursing a really bad cold. She did it regardless. I am a strong runner, but her strength is over the top. It was the only time in the years we have been together, when I have seen her run with the look of suffering on her face. I felt it with her. I am grateful to have her in my life. I suppose our fighting instincts are one of those unseen qualities that drew us to one another nine years ago, even though we had little to nothing on the surface, or our backgrounds, that looked similar at the time. I've grown and been made a happier person because she is in my life. Her influence on my outlook on myself and this dialysis odyssey cannot be underestimated, nor can the role the kids have had in the same way. It is the interconnections of our mutual wills that give us purpose, why life matters. Our lives are defined by those who love, care, and demand the best from us.

Saturday, April 16, 2011

Its Saturday, time to get caught up on cleaning, get a good run in today (5-7 miles), do some reading, and have dinner with a friend tonight if all goes as planned. Sometimes its does , sometimes not. More realistically its a question of how smoothly one thing flows into the next. Had and easy week of dialysis, and was able to catch up with the my Transplant team people in Cleveland this week. I like to call every six months or so to make sure all they need is there and everything is up to date in case I get the call. It has been about six and one half years and the I know that a "perfect match" is really the only thing I am waiting for. Since I've had two prior transplants in my lifetime, and subsequently rejected those organs, its is not simply a question of the right genetic match, (which many persons who have tested as potential donors are, such as my sister and my wife), its also needs to be of a special mix that my body will not immediately recognize it as a foreign body and mount an attack upon it and therefore reject it, regardless of its "matchability".

So I continue to do the dialysis thing, which really is nothing more than a tiring inconvenience, but otherwise a blessing that keeps me alive and active. More on the dialysis life some other time. Its a participatory event, not as passive as many believe it to be. Have a good one today...breathe it in.

Thursday, April 14, 2011

It is time, after a long, long, layoff, for another entry on the long and winding road of my personal medical history. I started this set of entries in the blog in order that persons who may not know why or how I am on dialysis, waiting for a kidney transplant, it came to be that I am in this position.

The last entry on my history was in the late spring and early summer of 1983, I had just received my first kidney transplant at the Cleveland Clinic from my Mother and was after an initial surge of tremendous new health and emotion, was experiencing the first ominous signs that things were not working out as hoped.

June of 1983 brought about more bad news as the numbers were indicating a full blown rejection of the kidney. With my birthday on the 25th of June I found myself in the hospital again getting pumped full of steroids trying to reverse the rejection of my new kidney. I also recall finding myself in a room next to a jovial rotund middle aged man who befriended me and my family through this rather intense time. This was not the first, nor close to the last that I can recall someone drifting into my life for a given short time, during specific events, who acted, to some degree as the finger that points at the moon. Not the moon itself, but a pointer to where and how things needed to be. Regardless of the large difference in our ages, and our medical situations we bonded quickly and a remember his smile, warmth, and humor, while I very reluctantly began to embrace the terrifying reality of the transplant not working out and what and the hell was really going to happen.

I was aware at some very abstract level at that time that death was part of the deal here, but it never held any relevance to me. I had known of a little boy, from Turkey, whom I had met the year before who had passed away, but that simply meant I did not see him around any more, just like coming or going from the hospital itself. There was the hospital life, and the life you lived at home. They did not mean anything. Only being well, not needing to go back, and living at home was real. But things were getting more real all the time as options that summer were becoming limited, I was clearly sicker, and the life I thought I was going back to wasn't there to embrace me. I even was in the local hospital during the most important time for me and my family that there was every year... during our annual trip to Lake Michigan. Thank god for my kidney doctor who had known me and my family for years, and who shared the same special affinities for Lake Michigan do to his family having a cottage of his own just north of where my family had been going for a couple of generations, he ordered, after I was stabilized (enough) that I be allowed to leave and join my family on vacation. Dunes, sand, sun, lake, and family love at that time was more powerful than any drug regimen I could have had put through an IV.

Even though time was to some degree bittersweet, my doctors belief in something so unscientific taught me a lot that I would carry for all my life.

The end of summer brought a truly failing kidney, barely stable enough, but enough for me to start Junior High. A very strange looking little boy was walking into a very scary place that fall, a school, which at the time was one of the largest two grade junior high's in the country, and with a very uncertain prognosis on how long I was going to be there.

Next in the medical history; the fall of 1983, and getting really sick.

Yes I am am alive, but it was a very difficult winter in Toledo, Ohio this year. I was caught up in the slow, cold realities of the season, and some other things I had no control over. Winter can have its beauty, and its special solitudes, but it can really close your life down and emphasize the negative issues happening all around you. While my overall health remained good as I did my dialysis, ran five to six days a week, and maintained my overall schedule with my wife and family, I was overwhelmed by the depression and sadness that accompanies the time of year. I also dealt with the deterioration and death of my 14 year old Lab who, towards the last months, demanded all but just a few of my minutes everyday. Every night for about the last year or so my wife and I would be forced to take "shifts" sleeping in the downstairs with her, because not only could she no longer walk up and down stairs, she also would bark all night long if left alone for even a few minutes. We loved her very much and losing her was very difficult. Death was part of the dialysis unit as I was aware of at least a few deaths this winter from various complications from individuals situations.

The funk lasted until just recently when my wife an I took a small vacation to Dallas where i have family. Being in that environment was so good in so many ways. The family love, the warm and green weather, and the feeling of renewal that comes with getting away from home just turned things from our winter blahs to a spring of hope.

My wife has hounded me to stay on top of the blog for several reasons, not least of which is the good it does for me to have this to do every few days and to share with others needing to know they are not alone with their struggles to move ahead while dealing with a life and death health issue in their life. I look forward to future interactions. Please feel free to share your comments, and your experiences with me. Thanks...and a very good Spring to you.