Tuesday, December 14, 2010
its been a long while since i've put anything on my blog. I guess I'm a bad blogger. Overall my dialysis and health has been good as of late. My mood has been down due to me not working. Having no where to go everyday can be a downer, but I've tried to redouble my efforts at being the best house husband I can be. With my wife working, in school, and just being mom and wife demands all that she can give, and she needs me to be more at home than ever. Even though it is an easy trap for my accomplishment oriented mind to fall into, being all I can be at home while taking care of my health is alot and I should be proud and satisfied with it. I'm still running six days, and my hemoglobin has been up which makes the runs fun. The blood numbers are good as well, and my weight from treatment to treatment has been really good, which makes dialysis that much easier. I've reflected on where I'm going with this all, dialysis, possible transplants, life in general. With no real answers I've really tried to relax and do what I need to do each to make my wife, the kids, and the dog (14 years old) and cat's needs come well before needs I can't quantify for myself, nor should I. Its enough to stop the compare and contrast for now.
Monday, November 15, 2010
Battling a first class cold right now. Started as just a throat cough, now congested and run down. Of course the "run down" is probably not the cold itself, but the always fun cold and cough medications I take so I can simply lay down and get some rest. I did run all weekend and did some heavy duty housework as well. I guess maybe this hangover is from the abundance of drugs in my system, not a cold growing into something worse..
It is fairly common, and a real concern as a dialysis patient to have simply things like colds morph into something far more serious. It has happened to be many times in the past six years where I was fine with a minor something or other one day, and then in the emergency room the next with a crippling fever and a dangerous infection or pneumonia. Seriously no fun. As I've said many times since starting this blog in July, it has been a great year completely uninterrupted by an episode like that or anything else. Last year, September all the way through the second week of December it was one long (with lots of mini series in between) event of illness. Never really shaking all of it I eventually found myself in the hospital in late November and early December being treated for the remnants of an infection that never completely went away, and a touch of pneumonia. The whole last fall I did what I could, still ran, not well, but still ran, still worked, and still did the family stuff, just not very well, and with a lot of rest in between. Since the last hospitalization in December 09, I had just such a good year overall, and staying away from the emergency room is a real plus. So having a cold that slows me at all makes me nervous. The staff at dialysis stays on top of it all and has ordered me to get a chest x-ray if this all persists. It is well understood that as a dialysis patient with compromised immune system, these types of things can get out of hand very fast. I am grateful and do appreciate the attention to detail I receive in this situation, even though it comes a the price of being a dialysis patient and all that that involves for my life.
Thursday, November 11, 2010
Its been a while since my last entry. My job situation has changed in the wake of the Groundlevel coffeehouse going out of business. It was very sad but not entirely unexspected. I had not been paid myself for the past month, even though my pay is below minimum. I was honestly just happy to have something I enjoyed doing and liked the customers I had grown fond of since I started. I worked very hard and tried to do everything I could to keep it going, but between the already built in problems of the shop, and my personal limits with my dialysis schedule there was just no more that I could do. Regardless I do feel bad, and sad that I can't work there anymore.
I got my monthly lab work and all is pretty good. All the numbers are where they need to be, and those that are not can easily be fixed by refilling a prescription. I have a slight cold, but nothing that has stopped me this week from running everyday. Good runs, with distance and power. It really is the only time recently I feel good about things. I will be supplementing my entries with more on my past medical history soon. I know I've promised this before but by Saturday it will happen.
Monday, November 1, 2010
Overall it was a very good weekend. Friday I worked in the morning and got home around 1:00. Since I had two hours until dialysis I did a classic "sweat run". I wore two layers of sweats, with a winter hat, and gloves, ran three miles, not worrying about speed, just moving without stopping. Did forty-four minutes (time more important than distance) and sweat out few pounds of fluid that doesn't need to be dealt with during dialysis. Makes it so much easier and going into a Friday weekend treatment that is nothing but nice. The less fluid to come off during treatment, that much easier treatment usually is.
Saturday morning had a great run. Needed to do an early workout because my son had is last football game of his season and his mom and I were throwing a party for him and his teammates. Then off to a Halloween party that evening.
Sunday had nice lazy Sunday morning. We then took a couple of the kids to the Y for swimming while we ran and worked out. Another very good run, and felt great. I've been more disciplined about my intakes lately so workouts, and my overall feel has been good. Dialysis is just that much easier.
I am keeping up on my vitamin regimen as well. Two of them are recommended by my doctor, two others, while not recommended have been blessed. All in all they are helpful and I am glad I have found there benefits this last year.
Thursday, October 28, 2010
Had a care conference yesterday at the unit. Fancy way of saying that my doctor did his rounds. Most of the patients in my dialysis unit are under the care of one physician, so when he comes to do rounds it is mini event with at least one nurse, the dietitian, social worker, and sometimes family present. These care conferences are good times to work things out, but many patients out of lack of knowledge, apathy, or just plain fear do not ask and dialog about what is going on with them and what they wish to have happen. It is unfortunate but the doctor/medical staff and patient relationship for many is at its best poor communication and antagonistic at its worst. Dialysis is a a 50/50 relationship in order to maximize the best quality of experience and life for the patients. I have had to learn to take the best care of myself, listen to what needs to be done, follow my diet and fluid restrictions, report things that are going on with me at home ( everything) and communicate during treatments about basic stuff. The medical staff can then properly and appropriately treat me with all this in mind and make my dialysis experience the best and most efficient for my overall health that it can be.
Ask, learn, act, be, adjust, re-act, be again, and then ask again. It never ends stable health is only a snapshot of a moment in time, and dialysis, as in any life is a moving process that needs to be seen through the constant movement of all the aspects of ones daily, weekly, monthly, life.
Wednesday, October 27, 2010
Wednesday morning, at work and realized I need to add to the blog. I ran into someone who recognized me from dialysis and told me that there relative had just started recently at the unit. She explained, quickly, that she and her family were worried about him for some reasons. I was able to explain a few things to her about what was going on and that such and such was normal with blood pressures and being sick during and after treatment, especially when one is in the first few months of the process. She felt a little better knowing this. This interaction just confirmed why I'm doing this blog and what is important for patients, young or old, rookies or veterans, knowing things makes things better. Better health, better peace of mind, and better quality of life, for the patients and their families. The knowledge of what is happening to you, and why things are happening in a certain way doesn't always make you actually feel better physically, but I truly believe that is to shortly follow. When one is given the tools of knowing, they can feel more secure in moving forward with their day to day lives without crippling fear and depression about the situation. That can only add to a better overall health situation. Better state of mind, better state of affairs. My experiences have always, I mean always bore this to be true.
Saturday, October 23, 2010
The last entry on my medical history is from September 28th. I didn't realize how fast things have been going, and how lazy I've been. Anyways on that last entry it was the spring of 1983, Michael Jackson's Thriller was ruling the Billboard charts, Lee Iaccoca was remaking Chrysler...just kidding. I had just received my first Kidney Transplant at the Cleveland Clinic, my bladder was working for the first time in my life, and I was really good for the first time in my memory. Its really strange after being sick for so long, years and years really, and then how you feel literally the second after being woke up after the surgery for the transplant. Its like nothing I have ever experienced at any other times in my life. The amazing clean, and clear, and strong that i felt made it feel as though i could go straight from the recovery room to work hauling bales of hay, while reading advanced physics. That whole week or two after surgery, except for the treatments of horse serum, or other reactions to things was overall a great time for me.
When it was time to go home i would feel something that I would become more accustomed to (unfortunately) over the next many months, fear. I was becoming used and safe to being in the hospital, and going home away from the constant care and protection of the hospital and the staff I had grown tight with was a little frightening. However, going home was intoxicating, especially after the last few months I had gone through and I went home with a new life in tow.
Being home, in the late April early May of Toledo was like being placed in some type of fairy tale with the majesty of spring, and the good health I was experiencing in my life. I remember just wanting to do everything at once and feel everything now. Rolling on the grass, putting my face up to the sun, smelling the spring blooms. It was all so amazing. I went, after about a week or so of being home, to see all the kids I hadn't seen at school in over five months. It was weird, nobody really understood or recognized me because of the side affects from the predisone I was on that made me look like a plump munchkin from the Wizard of Oz. I was shunned a bit and felt out of place with kids I had spent my entire childhood with. It was hard, seeing them have fun with each other, and getting ready for junior high. The girls were flirting with the boys, and didn't even see me, at least that is what I thought.
Apart from this I was finishing up the home school stuff for my transition into summer and then back to regular school in the fall. It was the end of May and the Beginning of June, about a month into the transplant when we had some signs of trouble. The transplanted Kidney, according to the weekly lab work I was getting was showing signs of early rejection. in other words my body's immune system had recognized it as a foreign object, no different than say a cold virus, and was mounting a battle to destroy the organ in the body. The numbers were bearing this out. If there is one single lab value that I was getting most intimate with, and the one that would tell me the whole story of the thin line between life and not life it was creatine numbers. A good one for a functioning normal kidney is (depending on individual lab normals), .8 to 1.2 typically. The creatine is a normal by-product from muscle growth and decay in the body, and is excreted at a regular rate by the kidneys. When this number is higher it indicates something is amiss in the kidney function.
Late in May and early and June of 1983, this number was climbing fast and the doctors were doing what they could to stop it from getting worse.
Monday, October 18, 2010
I apologize for the lapse in my entries as of late. I have been working so hard and have hit the proverbial wall lately. I will be adding several entries in the next few days. Look for a continued medical history entry. Thank you to all who have been reading these ramblings. It is appreciated. I have been feeling little better and had a run to live and die for on Saturday. I know that my hemoglobin is up and I been at least a little more careful with my daily intakes.
Tuesday, October 12, 2010
Ive been run down, and my medical team wants to make sure that my lowish hemoglobin is not the result of some unseen and undetected infection. I know I'm fine, but need a little more rest during the week. It seems to be all piling on lately, without a break, and without extra help. Even in the middle of the night, when I can fall asleep, I'm not because my 14 year old pup needs her dad to get up, get out, eat, and not be alone. I love her so that is what a dad does. But after the super-long days its just the extra-xtra that is hard.
I will be adding more entries on my medical history in the coming week, but one thing has hit me in my remembrances. Its never just about and involving you. There is so many more invested, involved, and part of the story. Their story is part of your story and vice versa. Perspective on others struggles and relations is important when I go through or remember my deal.
Sunday, October 10, 2010
Over the weekend I found out that a patient, who had been in the unit at least since I started six years ago has passed away. Robert Cunningham, also known as Rev, because he was a Reverend of the First #1 Church of God was a special and wonderful person. Body ravaged from his diabetes, his kidney failure, and other complications, he was always upbeat, loving, and caring for all those around him. His life was a tribute to the power of love, of god and family, how this carries one through the other stuff of life. The purpose is to love and to serve. I am reminded and moved to think of him, listening to Anita Baker's "Body and Soul" brings his total devotion to his life and his purpose( Not just the words, the soul of the song). The rest of the stuff is meaningless. Love and Best wishes to his family.
Thursday, October 7, 2010
Its Thursday. A day off, no work, and no dialysis, I'm in a dream. Oh by the way its sunny, seventy, and a perfect fall day. Can not wait to get out and run at Ottawa Park. My favorite run, and on a fall day like this, somewhat otherworldly. Heaven like. Yesterday had my monthly blood work drawn at dialysis and want to know if all is well. It keeps me honest on my eating and everything else to see my numbers are OK, also I'm competitive with myself to try to have the best labs every month that I can. As I discussed a couple of entries ago I also want to see where my hemoglobin is. No single lab number is more real and relevant to my day to day feeling and level of activity.
Besides the new patient I spoke of yesterday, I've noticed some other new faces, and the fact that some other faces are not there. I'll update on this later with more information.
Tuesday, October 5, 2010
Yesterday in Dialysis I looked across the room to see a person who was coming into the unit for the first time. He looked scared by it all and was trying to assimilate everything going on around him. One of the nurses, who has been there for a long time, and who I know well, spent a great deal of time just talking with him. She is very special that way, assuring and comforting. He just looked so vulnerable. I was happy that she cared. It can be so frightening. You don't feel very well, you go to the doctor, they run tests, you are hospitalized, then told your kidneys don't work right anymore, and that you will need dialysis to stay alive. A catheter is put in and boom. Here you are.
I spoke to him briefly on the way out myself, letting him know it does get easier, and that I was glad to meet him, that he is not by himself. The truth is that it is scary for some, hard for some, harder for others, good and bad at the same time. Frustrating and confusing. Overwhelming and depressing. I told him about this blog if for nothing more than for him to know more about what he is going through is not the first time this has ever happened.
I am grateful.
Monday, October 4, 2010
I have been not feeling the very best lately, not sick, but not feeling as energetic as I had for most of the summer. I know that working as i have been is stretching me out a bit from what I was used to, but still, wish I wasn't quite as tired. Friday afternoon, before dialysis, I did a three mile run and felt like my hemoglobin was "bottomed out", somewhere around 8-9. I do have an uncanny ability to call my hemoglobin within a tenth of a point. From knowing what it is from month to month and then being aware of the number relating to my running and how it feels (breathing, performance, etc.) I have been able to tell how it runs. With that in mind Friday's run really sucked. It was hard, and never really got any point where the pace was easy or not hard. So I felt, and then asked my nursing staff at innovative dialysis to tell me my most recent numbers. It was higher that I had thought it would have been, but it had been dropping from a high point three weeks earlier. Epo had already been bumped up to counter this and due to this adjustment, or just good dialysis, more careful diet and a placebo effect, I then had two very good runs over the weekend. A very fast three miler on Saturday, and a strong five miles on Sunday.
Busy weekend like usual, with the added bonus that friday night on our way out the door to go to a football game, one of the kids, who have denied any wrongdoing, flushed the toilet wrong causing it to run and overflow for the entire time we were out. Flooded bathroom and a new waterway created in the basement. Cleaning it up was a lot of fun.
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 life...best 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.
Tuesday, August 24, 2010
Since thursday post I've found myself very busy with the quad of duties, family work, exercise, and dialysis. I've been a little burnt out but as soon as the kids go back to school next week things should be easier. Did an incredible 22 mile ride with my wife, on a trail I had never rode. We had fun, even though it took something out of both of us. That day was the only day in the last seven I haven't run. The other days have been good, feel strong and relatively fast for me. Picking up more of the duties at the Groundlevel and I'm having fun. Must get back to work.
Thursday, August 19, 2010
Part of the whole deal with the dialysis thing is the "unseen" expenses, and the absolute necessity to be on the Medicare roles. With expenses in the 40K range per month, without any additional hospitalizations or doctor visits, it is imperative to have medicare as your primary insurance source. With a catch in the original medicare law from the late sixties and early seventies dialysis, kidney transplants, and any end stage renal failure diagnosis, are covered by the system up to 80% of cost. The rest, if one does not have private coverage which will pick up the remainder,
( which incidentally most do not, or will not over a longer period of time do to the massive cost), must force one into the state medicaid roles, or also known as welfare. Last week I had to go for my semiannual interview to renew my benefits. I really hate having to get it but with excess billings in the 10's of thousands per month I have no, I mean no choice. The real unfortunate result of all this for me personally is that while I can work, and within part time parameters could be employed at a regular rate as an attorney (which i am licensed in Texas and Ohio to practice) I am limited in the amount of money i can receive and still get insurance. We will see if the new medical laws have any affect on this, as in me not being denied private coverage through work for my pre-existing situation, and it not affecting other's premiums as well. For now I live, in theory, below the poverty line. I am not deaf to being on the front line of the medical/insurance debate and conundrum for our country, but feel strongly, regardless of my personal desire to be alive, that medical care, within some specific exceptions, is not a "market driven privilege" like any other economic good or service. On both sides common sense must prevail, costs must come down, and access must come up. Most importantly, as a society medical care should not be thought of in terms of only when one is "sick". Medical care should encompass healthy living from conception through end of life issues which address compassion and cost.
Tuesday, August 17, 2010
I'm sorry that its taken so long to get another post. I've been doing quite a bit. Went out of town over the weekend for my anniversary. Beach time and fantastic food, as well as two great runs and some good company. Its always good to change your perspective even for just a little time. You are refreshed. My wife and i have convinced ourselves that next summer we are going to ride from our home in Sylvania, Ohio, to our cottage on Lake Michigan, Holland Michigan to be accurate. Stay up to date as we prepare and plan for this big trip. Knock on something because I'm still having good health as of now and I have been running and cycling almost every day. It is shallow of me, especially knowing and experiencing all the ups and downs I have had over m lifetime (health or otherwise), but its hard not to feel extra good mentally when your physical dimension is in proper alignment. To hang onto it would be a problem and I need to realize even with the good that "this to shall pass".
Wednesday, August 11, 2010
Wednesday August 11, 2010. A lot has been going on in my life the past several days, and a lot more is yet upcoming. Since Saturday I've had some great runs, bikes, and some easy dialysis. A couple of long rides 15 and 20 miles, with two fives and a six miler runs. My body can still handle it so I keep doing it, and its fun. Had some sad days with the passing of my mother's dog. He was diagnosed with bone cancer on Friday and went downhill very quickly. We are all sad and surprised at the loss. It shows the fragile nature of this life we all experience and the must to embrace it. On that note tomorrow is my fifth wedding anniversary and a weekend away to the beach for time alone and fun.
Saturday, August 7, 2010
Saturday night and I'm doing the Ground Level, its been a good week. toady six miles at Wildwood Park (very challenging due to the sand trails, steep hills, and hot sun),then we came home and did eight miles on the bikes, followed by the best idea ever by my wife; Massages! Anyways a good part of the overall health is to learn how to have your body taken care of during "down" time, that includes the down time from dialysis when the body is probably the most stressed. Sleep, stretching, proper eating, and drinking, supplements, and mind/body efforts all add to an overall better "life" for me. I found early on, within the first few months of my final stages of kidney failure and imminent start on dialysis that the belief part of the equation was the most important. In other words what I felt and believed was possible for myself was exactly the way it would be, and to feel that running marathons and having a full vibrant life was to be, it would be. Work and effort naturally followed, but it was a joy to do, because that is what was to be. Not always a joy, and not without its detours, stresses, and adjustments, overall the life I continue to have as a dialysis patient is a good and rich one for me, regardless of what may be evaluated or measured by any other standard.
Monday, August 2, 2010
In a break from the retelling of my medical, and life history, today I had an early treatment at 6:30, after a physical weekend. Especially Sunday when I ran at Ottawa park (hilly and hot) about five + miles, then an additional mile at the Y, with some weight lifting and then some swimming. Finally in the evening my wife and I went for a ten mile bike ride. It was all so fun, but i have to admit it was a lot. Not from the activity, rather the buildup of toxins, caused me to feel like I needed dialysis, just felt run down and off. I felt great afterward, except for being tired, because of dialysis and oh, I forgot, not sleeping last night because of my sick pup. Phoebe. We are all better now. Its almost 4:00 in the afternoon, and my second day has begun.
Saturday, July 31, 2010
So I was about six months old when they finally diagnosed the problem, and started me on the the long road to fix it. The first thing to do was to attack the massive infection now affecting both kidneys, secondly, because the function was found to be lacking in such a severe way, the doctors felt it best to reroute my urinary system to a stoma created on my abdomen for the purpose of getting rid of my waste. So I now had a "bag" fitted onto the stomach area which then collected the urine as it existed from the stoma surgically created by the doctors for this system of urination to work. The prognosis in the short term given to my parents was certainly rosier than it was back in Toledo, and I looked, acted, according to my mother as a soul who now wanted to be part of this body and life. The long term prognosis was quite a different matter. At that time long term survival for people with kidney failure was not good. Dialysis was not a welcome or long term prospect for anybody, and transplantation was still really new and really still in the science fiction category. Survival rates for transplants, even living donors with perfect genetic matches was around 75%.
My parents, both young, 21 at the time, were to some degree overwhelmed but at the same time had a faith and a real hope that my life moving forward was now on the right track. The next years of my childhood would hold the full promise of the gifts my parents would give to me. I would live a full childhood and treat myself, and thus be treated by others as completely normal. Never to be thought of as sick in any way, the frequent visits to Cleveland, and the Clinic only reinforced the belief that I had of something special, and unique, not sad of scary. Furthermore, my parents were to remind all the staff I dealt with growing up there that I. and not they, was in fact the patient. The doctors were not to talk down, or whisper in condescension to me. Treat me like a real patient, who was responsible for my own care, and that's how I then looked at it myself.
There would be many big decisions on the horizon as my kidney function would inevitably fall behind my growth and development. Someday lots of things, the kidneys, the bladder that had never been used would be on the agenda. But for the first ten years I have a childhood of friends, summer trips to Lake Michigan, school, football in the street, skinned knees, scrapped up faces, forts, Legos and hot wheels, kick the can in the moonlight, first kisses, and my cat Morgan. My health wasn't on hold, I held the life my parents wanted me to have and I really loved it. Things would not really change until around sixth grade.
Thursday, July 29, 2010
In the first of several entries I thought should give some context and history to how I came about with kidney failure and why I now, at this point in my life, am waiting for a kidney transplant (which when it happens will be my third).
At birth, I was found immediately to have serious and life threatening health concerns and was placed into intensive care due to being labeled a "blue baby". Not being aware of the underlying causes for my oxygen deficiencies and other outward signs of physical stress, the medical care was not adequate and unsuccessful in full treatment of my problems. After being sent home with my parents, they, and my extended family, after returning my an extended trip in Europe, realized that I had serious health problems, but were unable to discover the underlying, and real cause for my issues. My parents were distraught as I was unable to sleep through the night, constantly crying, not able to nurse without fuss and sickness. My mother and father, being a first time parents, and young, were at a loss, but knew something was not right, so they continued to go to the pediatrician for answers that were not there. Emergency room visits were also short term patches due to no one pinpointing, until a few months into my life, that they felt the only answers would come if I taken immediately to the Cleveland Clinic for an evaluation.
A look over by the medical staff discovered the problem as acute failure due to an infection caused by a birth defect in the urethra which was blocked thus causing a backup of urine into the kidneys while I was developing in my mother's womb. This diagnosis was just the very beginning. The path and treatments of my lifetime were to be set, and forthcoming, in the early decisions made at that first time spent at the Cleveland Clinic in 1971.
Wednesday, July 28, 2010
Had an early morning treatment, 6:00 am today, came home and had a long sleep. All running and biking with dialysis today caught up to me. Slept for almost five hours. I'm now up, had a Red Bull and going to the Y for a run with my wife. Soon I am going to add some entries on my medical history to put some context to where I am now. It will take some work since I have been dealing with the kidney issues since birth, 39 years ago. I don't feel that old, really, still feel like I'm 19 sometimes, and well, after dialysis, maybe 29! Anyways need to go off and run so my wife and i can see a movie later.
Tuesday, July 27, 2010
Tuesday has come after a busy and very full Monday. Had dialysis and it went well, my weight was in check after the weekend, only 2.5 kilos. Afterwards took Rose to work and then finished dinner for the girls and went to the Y for a warmup bike and then a rather fast three miles, especially for a dialysis day. For some reason when i came home I cycled another five or so miles because it is so relaxing. It has made such a difference with me to have this new bike in my life. i feel so free and at ease with my evening ride. The sounds the smells and the fresh air in my face. I am wondering whether the vitamin regimen I have been on for the past six months including the new zinc recommended by my doctor has anything to do with my good run of really good health. Well, it is good whatever it is.
Sunday, July 25, 2010
Its Sunday evening, trying to kick back a little. Ran yesterday (five miles) in the incredible heat and humidity around 105. Also did a ton of work around the house finishing up the new rooms for the kids. Today I had a four hour work meeting for with The Ground Level, then another run and cycle at the Y. Oh yeah, I biked last night with my wife and son. Maybe this is all too much, but I do love the activity. Keeping my weight and blood pressure under control. Just hope the phosphorous and potassium are OK. Just need a good nights rest without a sleeping pill that drags on the whole next day. When there is no kidney function, some medications just stay in your bloodstream to some degree until they either sweat or are really cleansed out during dialysis. In more simple terms, that sleeping pill I took for bed last night maintains its sluggish grip for the whole day. I'm looking forward to my weekly schedule and hope that my wife has a "smooth" week. The first of the week for both of us is always hectic, and a bit overwhelming.
Thursday, July 22, 2010
Had a good treatment yesterday, and it was my doctor's day to do rounds. All looks good and he is offering a simple solution to me low testoterone levels by taking of all things some Zinc. Other than that we talked about my new bike and riding. Its good to be healthy, relatively speaking. I wonder what my life would really be like, that is different, if and when I get a new Kidney. My life now is pretty full, and my dialysis thing is just an inconvenience, bigger at times than others, but not life halting. Back at the Ground Level this morning. Need to get quite a bit done today. My wife is in class and the kids always need food and fun, especially in the summer.
Wednesday, July 21, 2010
Austin Klapp: Its the middle of night and I'm not sleeping. A co...: "Its the middle of night and I'm not sleeping. A common problem I've had most of my life (being up at night) is now only ten times worse beca..."
Its the middle of night and I'm not sleeping. A common problem I've had most of my life (being up at night) is now only ten times worse because of the dialysis thing. Yet another thing about having no kidney function, and little known at that, is the hormone imbalances and defects. Everything from testosterone loss, to epo being off, kidney failure is alot more than just the toxin and fluid issues, which are massive in and of themselves, and of primary importance to the entire dialysis process, because frankly one can really die, and really quick, if these things are not addressed on a day to day basis. Its funny to reflect on the fact that if I did not go to dialysis for the next few weeks, i would simply die. To see other patients, especially, the older and the very sick due to multiple system failures just decide that they are done with it and say goodbye. Dialysis is artificial life support. Well done and assisting me in the quality of life I enjoy. I'm grateful, regardless of the "complications". I know alot of people with no health issues such as ones I deal with who carry more life crippling "complications" everyday. Sometimes the overcoming is what makes us all feel alive. I know its my dirty little secret.
Tuesday, July 20, 2010
Morning at the Ground Level, still working out the morning "grind" for when I'm to fly solo and run the place early. Always good to be wanted and have things and places to do and be. Have another full schedule today with my wife off at school and then straight to work. The kids will want, and then want some more. Its okay, as long as I get my run in sometime before I fall asleep tonight. Five miler? We'll see. Off days ( from dialysis) offer just enough time in the day, along with the extra energy to get so much more accomplished in a less stressful way. Stop by and get some coffee with me at the Ground Level, see you soon.
Monday, July 19, 2010
The rewards of a good run and taking care of most of the kids needs is my frozen gatorade, hot shower, and a Tigers win, but can't depend on the Tigers all the time. Baseball, especially, professional baseball is alot like my life on dialysis, managing to move ahead in a game really built on spaces inside lots of failures. Negative space. Being defined by that which not seen. The very best hitters in the game, ever, make contact and get on base about 40% of the time, and we are not even talking about getting to home plate. These diminishing averages some how put scores on the board, and one team does manage to win a game.
Busy Monday morning as I'm opening the Ground Level with Jesse for the first time. We had alot of business this morning and also no ice machine, lots of fun running to the carry out for ice in the middle of a smoothie order! Have just enough time to put down blog and finish start up at coffeehouse before first of week's dialysis. I'm about three and half kilo's up on my weight so it should be kinda tough treatment. When that much weight has to come off it gets a little rough. Also depends on how much "junk' in my bloodstream from the weekend. Anyways this is what I've signed up for with the new gig. Good to be busy though, and needed. Doesn't end later with dentist appts for the kids and Rose with work means I'm feeding the kids tonight. Won't rest until late, real late.
Sunday, July 18, 2010
Sunday evening, time to figure out dinner for my 15 year old's Birthday. Looks like maybe olive garden...easy. Had a nice time by the pool after my four mile run. Hot, Hot, hot though. We are lucky to have the pool so close to the house. My wife and i can't seem to stop getting ready for the week. Lots to do and we try, really hard, not to get stressed in advance of it all. It just never ends.
Saturday, July 17, 2010
The day has come to close with the perfect meal from the Beruit. The biking and run were both special. Really special though is that in a few hours my baby, Phoebe, will be 14 years old. I love her with all my heart. She keeps showing the way even though the way is rough at times for her. She never stops loving her family. Happy Birthday special "B".
Family, not me, off to Cedar Point today. Already can't stop picking up with everyone gone and no one to yell at. I'm going for a ride today on the new bike, probably a long one, with some twists and turns. I haven't done that since my college days. This is why I got the bike, for that. To feel free and one with the sky, riding nowhere in particular, also pushing your body. I never can just completely relax, but maybe that's been my thing all along. Because later I will also be running at least four. I should enjoy this while it lasts because I haven't had an uninterrupted string of good health like this since I started dialysis over five years ago. Its been since really December, in the hospital, with multiple infections, that I have been "sick". I did have surgery in April but really not for any illness and the recovery was quick, I ran the weekend after the friday surgery. A male sensitive surgery no less. I guess I really can't stop. That is what my wife says all the time. I try to sit, but feel that being forced to sit in the Dialysis chair three times a week is enough for me. See you on the road somewhere.
Friday, July 16, 2010
Starting this blog to be read by whom? don't know. Had dialysis this afternoon, ran three miles this morning. Sitting at the Ground Level Coffee house learning how to do the finer points of my new job. I'm glad my overall well-being is solid enough to carry on this schedule. Looking forward to starting mornings here within a week or two. Every week day 6-10. Should be, at the very least, good for a sense of value besides sitting around the house. I have been asked to blog about my life (Dialysis, running, family, etc) for the Kidney foundation and I am still thinking it over. For now I feel I need to keep my jacket zipped up and let the wind blow me from the back. Anyways I'm happy now, even though I'm always being pulled to what I don't have or feel I should experience. Lets let that go for now.