Wednesday, September 29, 2010

Good morning. Working right now, and have dialysis this afternoon. Been reflecting on the last few entries on my personal medical history. It lacks a certain thickness or dimension in that I realize that during the times when my health and well-being, or life was in the balance, as it was acutely so in 1983, it is hard to express that I never really felt those things at the time. In fact I've never really felt threatened except for a couple of events in my life. Not then or now do I feel as though my health situation is a burden. To some degree I feel as though I'm a fraud talking about it at all, because while it has shaped to a large degree who I am and what I think about myself and life around me, I never have considered my health a "big deal". I have never to the core cared that much about the suffering part, everyone, i feel suffers, and to whatever degree and whatever reason that is real to them. For me suffering, as a real thing, just isn't there. Only as a state of mind does it have real power.

Tuesday, September 28, 2010

For those following the blog over the past couple of months in between entries about my day to day events, I have attempted to add a medical history of myself so that there could be a better understanding on how I got to this point in my life; that of on dialysis for the past six years while I wait for what will become my third kidney transplant.

At the last entry on my medical history I was recently out of my first big surgery in January 1983 when my two original kidneys were removed in anticipation a planned transplant two weeks later. The kidney was to come from my Mother and as with all great laid plans, things were about to go off track. As I already discussed in the last entry, dialysis, although temporary, was on the schedule, and was a shock in many ways for me at the time. It was only to be 10-14 days of this then the transplant at the Cleveland Clinic, but right before the surgery, and as I recall, right on the day of surgery, it was postponed due to a low grade but troublesome fever I had developed. At the time there was a real medical mystery as to the source of the infection. Tests were done and results were not clear. I was treated with antibiotics and it was felt we were back on track. During this period I was allowed back to my home in Toledo, Ohio where I underwent dialysis as an outpatient in what was called back then the Medical College of Ohio. Everything back then was a new shock for my young self and my family who was experiencing all this for the first time as well. In addition to the pain and discomfort of the recovery from the surgery, the adjustments and fear associated with dialysis, was the fact that my family was going through tremendous personal stress apart from all the focus on my situation. My father had been disabled the year before due to a severe back injury, he was unemployed, and was back to school training to become and Nurse. My sister was felt abandoned and put to the side, unfairly, due to my parents spending so much time and worry upon me. She was, during this period, watched by my grandmother, who would stay in our home during times when my mom and I were in Cleveland. My grandmother did this even though she was working full time herself and commuting everyday back and forth from work. Looking back there were so many family, neighbors, and friends who were there for me and my family to support and to encourage in so many ways.

Anyways after about month of dialysis and a fever that would not go away, it was discovered what the source of the mystery infection was. The recently sutured area from the kidney removal turned out to be the culprit as it was discovered that one of the stitches had become infected, or a sponge was left in, that became inflamed. A small procedure was done, where a square inch of infected flesh was taken out a stuffed with gauze and disinfectant. I was sent home for more dialysis, and instructions given to my parents to change and clean the wound until it appeared all could be cleared for the transplant. I recall the whole wound was as shocking as it was gruesome. My parents were taken back by the elaborate process of cleaning and dressing the wound everyday. This went on for a couple of months until we seemed to be in the clear for surgery. 

Besides all that dialysis went on, and as I have discussed in  previous entries, it (dialysis) was very different than it is today. One of the most important changes is the development of Epogen, which is a hormone produced by the processes of a healthy kidney which then tell the bone marrow to produce red blood cells. Important for many reasons, not least of which is the oxygen carrying capacity of the blood. If not produced regularly, one will be extremely lethargic and overly tired. Back then there was no way to replicate the healthy process except through blood transfusions to a dialysis patient. Today the hormone is injected during treatments (at an astronomical cost). The point of discussing all this was that I was getting blood transfusions during this period, and it turned out that I received some  blood from someone other than my Mother, the donor of the soon to occur transplant procedure. It would turn out to be the fatal error later on in the rather quick rejection of the organ that coming summer.

The transplant did eventually happen in late April of 1983.  I recall the newness of it all, the relief at the time with the feeling that we had been through it all an where it was all headed for me. Looking out my hospital room the trees were just beginning to bloom for spring, construction cranes working on a cutting edge medical technology (MRI) building outside for the Clinic, and what now appears the dark ages of transplantation was occurring inside my room.

Back then Horse Serum was given for anti-rejection of the organ after surgery(painful with terrible sickness), massive amount of predisone, with its heavy duty side effects, and the whole newness of using my bladder for the first time. I recall asking the nurses with all sincerity,"How do you know how to go to the bathroom?" It was exciting and scary all at once. The new spring would be different and strange in ways I could never imagine.

Monday, September 27, 2010

Its monday morning and I am doing the morning opening at the Groundlevel. Bright and early opening at 7:00 am. After the weekend I'm always a little wound up needing to have dialysis, the build up of toxins, and some fluid does affect me and I feel like I want to have my treatment. Weekends, while always enjoyable, are stressful because I have to be extra careful not to eat and drink too much or the wrong things so that Monday I don't pay for it with feeling run down, and having a difficult treatment. The more to "come off" the more difficult it is; cramping and overall sick feelings. Anyways still would like to get a run in later. 

Sunday, September 26, 2010

Today was the Komen Breast Cancer run. Did it with my wife, the girls, and her sister who is a breast cancer survivor. It is always an amazing event, thousands and thousands out for a fall festival party. All for the good. I had a really good run, compared to years past when I was sick one thing or another. Felt overall pretty strong, and did remarkably steady 11 min miles the whole distance. My wife kicked ass as usual and finished in the top ten in her age group. I am always so proud of her. Had to some work for the shop this afternoon. I'm very tired today, but will enjoy this weekend's end with some football and relaxation.

Friday, September 24, 2010

A hello to anyone here for the first time. While my entries are reflecting on my life on dialysis waiting for a transplant, the key term being my life, which is busy, full, and rewarding. Yesterday i worked the morning at the Groundlevel coffeehouse (7-11), did housework, ran 4 miles, biked 8 miles, and did the dinner, homework, bath, bedtime stuff with our kids. It never slows down! Yesterday was easier, certainly, because it was not a dialysis day, which takes time and energy from all else. Today is one of those days, but I am working right now, will then go to dialysis, tonight I will do at least a 3 mile run. I do not know how, and find it very difficult to slow down, even when my health is not the best and I find myself in the hospital or being treated for some issue, or just plain worn out from the dialysis process. 

I have reflected on how my life will change when I get a transplant, and it is hard to conceptualize. I guess that what will certainly change is the inconvenience factor. Last night I went to a meeting at my daughter's school for a trip to Europe she wants to do next summer. Looking at the presentation with the amazing photos of the places on the iterinary made me reflect on how nice it would be to travel freely without always having dialysis units lined up in advance, and just the freedom to move around without that yoke. However, I am extremeley grateful for it keeping me alive, and thriving for the choices I can make and do live out daily.

A transplant will only be a different form of what I am and do now. I still could, as my Dad used to say, be hit by a pie wagon at any time. We all have restrictions upon us. That is the special nature of being human. The perception and reality for us of our own suffering. The question has become perhaps more acute to me, being on this special form of machine life support. But to accept is to allow it not to suffer from it.

Tuesday, September 21, 2010

Since the last entry it seems like it has been one long day. Did have a wonderful dinner on Saturday with my wife at the Frog Leg Inn. Even though I really bent my renal diet restrictions, it was worth it because the food was out of this world and the atmosphere was inviting and cozy. Did a couple of challenging runs and a long ride over the weekend. Dialysis was a little tricky on Monday after eating and drinking all weekend, but we did raise my "dry" weight so the treatment wasn't too bad. By the way, dry weight is the goal weight after all excess fluid is taken out during the dialysis process, another way of explaining it is the fluid that builds up in the body, and bloodstream due to the kidneys not making urine. Anyways looks like all this working out is building some muscle mass, and weight. 

Anyways have to learn to pace myself, yesterday was nearly a 22 hour day. I feel i'm risking a sickness, even if its just a cold.  Like i've said before I am happy to be busy with the coffeehouse and all else, but need to know my limits.

Thursday, September 16, 2010

It just gets busier every day. Yesterday I had the Health Fair expo at Dana, after I had dialysis, where I represented the Kidney Foundation. We spoke to a few people but overall, kidney and kidney disease issues are very foreign to most people. After the Expo I caught up with my old law partner and our old secretary who is now a lawyer herself. It was nice to see them even though I don't miss the practice as it was now going on over five years ago. I realize how much healthier and happier I am not trying that stressful deal. I like the law, but practicing domestic and criminal stuff all the time can and does wear one down.  

After doing that the day got really busy with football practice, open house(s) at school, dinner, back to the shop for an hour, running to the sporting goods store for a mouthpiece, tons of homework, baths, and then late evening shopping at Krogers. Oh, forgot that I did a three mile run while my son was doing his bath. It was a long day 5:30 am to around midnight. I was busy and so was my wife. Going to bed was a real treat.

Monday, September 13, 2010

Back to the medical history string of my blog. At last entry we were ready to have my original kidneys removed in anticipation for a two week turnaround to a transplant of a new kidney from my Mother. Early January, 1983, I did have the first of what would become, many surgeries to come, with the removal of my birth kidneys. My father, who at that time was in nursing school, was told in his courses of study that as surgeries went, this ranked as possibly one of the top five most painful one could go through. It lived up to the hype, it was, as I recall, quite painful, and really shocking to me in many ways because this was really the first time my whole being was at the hands, in all ways, of the medical world. On top of this was the little thought of side part to this whole plan, which was the insertion of my first sub catheter, for the purpose of having a way to have dialysis performed during what was to be a scheduled two week period between events. The pain and discomfort was a shock, dialysis just added to it all as I, right out of the surgery then went to an inpatient dialysis unit at the Cleveland Clinic for the first time. It was physically difficult, and emotionally devastating to see truly sick and dying people for the first time in my life. Children and adults in a hospital acute dialysis unit are really the sickest of the sick, and as a young person who had lived as i had up to that point, this was upsetting. Dialysis back then was hard and when one starts up dialysis for the first time its is really hard as your body now is being "shocked" by it being cleansed and drained of excess fluid for the first time in probably years. Those first two weeks were dealing with that, and the extreme pain from the surgery, but hopes were high looking forward to the transplant to come.

However, things do not always go as planned, and this event would be the first vivid lesson to me as a young person that this was true. Just before the surgery I started to develop a slight but noticeable temperature which indicated something was causing an infection to develop. This infection, unchecked, could derail the whole transplant, so things we put on hold while we looked for the mystery infection. Surprises were yet to come. 
I feel like a prize fighter this morning after the weekend. I rode twenty and ran three yesterday, while falling off the bike in a minor crash. Saturday had a terrific run at my favorite, Ottawa Park, where my wife and I did a challenging, but fast five miler. Also for some reason did some weight training. I love doing it all, and am grateful that I can. Dialysis today after work here at the Groundlevel. It seems as though the past few months my schedule has just gotten packed. I'm happy to be useful and having fun being engaged in everything. Just have to remember to pace myself. 

Tuesday, September 7, 2010

Heading into 1983 was going to be a big deal, I remember saying goodbye to my classmates around winter break because I was going in to have my original kidneys removed around January 12, 1983. A couple of months prior to this I was already checking out from school as the enormity of the whole deal was starting to take over all else, and further I just wasn't the same person I had been and was not physically up to handling the day to day routine of school. I was also becoming really scared of what was on the horizon and remember vividly having a tearful talk with my wonderful doctor, Dr. Cunningham, whom I told my fears about the surgeries to come and the uncertainty of it all. He was a straight shooter and told me it would not be easy, and it would be painful, but he would make sure that we would do everything to make it easier. I was very close with him then and for many years to come, in fact he attended my first wedding 15 years later. What wasn't so easy to gloss over at the time was the uncertainty I was beginning to feel on the minds of my parents who were, besides just my parents of this sick child, but also facing the surgery for the donation of my mom's kidney to me. The whole thing was laid out and planned like a NASA mission, with the kidney removal scheduled first, two weeks later the transplant, and then a new laid plans.

Thursday, September 2, 2010

The last entry on my medical history took me up to sixth grade (age 11) when things were about to change. Up until that time, except for the ostomy I had to urinate, and the check-ups at the Cleveland Clinic, I was living a pretty normal life. Things were changing though. The general plan from the doctors and staff of the Clinic had been to come to a corrective state on my kidney function for several reasons. One was that the relative function levels of the kidneys was decreasing for several reasons. First was as I grew (which was stunted slightly) the percentage of kidney function was not keeping up with my body growth, secondly the kidneys themselves, due to their already compromised function were feeding more failure and the doctors knew that the only option, long term, was to get a transplant. At that time I did start to real "feel" that my health was compromised. I remember being more tired, and having difficulty keeping up with my friends for the first time in my life. I was losing interest in some of the fun things that took alot of energy, and some of the foods I had always loved did not taste the same, and did not sit well after I ate. I was, and for an eleven year old it was rather a big deal, becoming conscious of my own illness and the gap between myself and others in terms of my own limitations. 

I started out sixth grade with the regular excitement for a new school year but was being told that things were cooking with the plans for corrective actions on my health. The first of the issues to be looked at was to ascertain whether the bladder that had not functioned since I was born could be used. I was taken to the clinic for  a series of medical tests, some very uncomfortable, to test its viability. I remember late fall and early winter spending alot of time with my Aunt Beth and her new husband Uncle Jean-Claude at their apartment near the Cleveland Clinic, where my uncle was finishing his graduate work at Case Western U. We stayed there in the evenings while during the days test after test was performed to see if the plumbing would work, if and when a kidney was transplanted. Many a memory of radiology tables, dyes, and fluids, catherters, and discomforts come back, while evenings of Shadowfax the cat, hundred year old elevators, and my aunt taking care of me and my mother. On the other front was the tissue typing process to find a donor kidney. I was blessed and overwhelmed to have all my family come to see if they could give one of their kidneys. I remember my uncle Mark, scared to death of needles having his blood drawn during the process, my father finding out early on that he could not because his blood type was incompatible, and my grandfather, just below the age limit wanting to be the one. I was aware, and felt, as I had always felt, the love and support from my entire family. These two things were going on at the same time in the fall of 1982. The results were both good. The bladder and the plumbing were a go, and it turned out that my mother was a good match after all the testing on the blood and genes, and antibodies had been completed. We were to be scheduled for everything to start at the turn of the year 1983. The first step would be the removal of my two kidneys, and I was really starting be be overwhelmed and scared.
Another week of busy. Kids have FINALLY gone back to school and I have been picking up more hours at the Groundlevel. Dialysis has been steady and I continue to feel pretty good.  Having a little blood pressure issues, being low after treatments, but my fluids seem to be okay. I have been sneaking more liquids working at the coffeehouse but I'm not paying with extra weight. Excited for a regular schedule with the kids in school, and some more hours at work. I hope with this time I can fill in more on the Blog about my history for a more complete perspective on my medical situation.