I received a comment on feeling alone in the struggle with feeling ones life slipping away while waiting for the transplant. I feel that can be just as real a feeling as sitting waiting for anything that you fixate on as the "necessary"next thing that does not come as one may desire. It will pass and you will desire something else, and you will still be just that much closer to the end. Or something like an end. The hard part may be the suffering, but don't worry too much, I have found that that is temporary too. Let me know how you are all doing. Thank you for carrying on, and connecting. I will make better efforts to connect at least once a week.
Wednesday, October 5, 2011
I guess I have failed the blogger code, or law, or rules.. It has been several months since my last entry. I am sorry for anyone who may of wondered what had happened to me. Since July it has been a whirlwind of activities for me and the family. Lots and lots and lots more of activities for my wife and kids. Driving to practices, work, school, and friends. For me a renewed effort to hold the house and kids together while my wife finishes school. She continues to do more than exceptional, and the kids continue to take on more activities than we can drive or pay for in any given week. But we manage and I m proud of their efforts, and the no quit they have all shown going forward. I myself, have continued overall very good, if not great physical health, with a new mental tranquility that comes with the simple revelation of "acceptance". Seven years this month I started dialysis, and have been waiting for a transplant the same. I really can't say I have or do miss anything but maybe the freedom that comes from the being tied to the dialysis machine. I run around 30 miles a week (six to seven days running a week). Cross train several days, do housework, assist my wife, see family and friends, follow my Tigers into the playoffs, and look forward to trips next year to LA and maybe Hawaii! I try to keep it simple and realize it is hard, and thats ok too.
Wednesday, July 6, 2011
Its been a month from my last entry, what can I say. Bad blogger. Anyways, as is the case every year the first month of the summer is crazy busy. Kids get off school, baseball, swim team, my wife finished her semester in school (got a 4.0!), going to our cottage on Lake Michigan, and all the other odds and ends that come with all of that. Overall my health is very good, and dialysis has been going well. I've had many good runs, and bikes, but yet cannot shake the underlying blues that I seem to have coloring my view of everything.
Its hard to say that I am depressed, but at times, even though I seem to be busy, and involved with my wife and the kids, I can't help feel a little lost with the place I find myself with my life. Its not that I'm not grateful for the good fortune I have with my ability to have the quality of life I do have with being on dialysis and waiting for a transplant. It is for what is not there. A lost career, down time with not alot to do, and, selfishly, wanting a bit more money to relieve my wife of having to support us by herself. I know I'm more than pulling my weight with what I do around the house, and with the kids, but maybe its just a male social thing.
I've thought seriously about starting a consultation service helping dialysis patients, just starting out, as well as ones who have been on for a long time, to talk, dialog, and educate through simple but powerful techniques on how to go about maximizing their quality of life, both physically and emotionally while living through this uniquely challenging lifestyle. I do not come from of point of naivete on this idea. As a former practicing attorney, a guardian for abused and neglected children, and someone who does regular speaking engagements on kidney and kidney failure to a number of groups and organizations, a really see a need for a concrete service for all persons connected to this issue. I continue to think and plan on how to put this together. Anyone out there with ideas and feedback, please write back with your comments.
Talking and helping others, as I have found, gives renewed purpose, strength, and hope, to you as well. No matter the problem, sharing with others can really bring help to all of us.
Tuesday, June 7, 2011
Have strep throat, sore all over, but my monthly numbers are good, and as infections go, this one is small time. It has made me feel a little down, physically, but thats the deal. It has become full blown summer here and its is hot, hot, hot. Easy, if I want to sweat out any excesses in fluids that I may wish to partake in. An hour in the weather today, running or biking, would lose an easy couple of kilos of water. Im here writing contemplating that fact right now. I will do something just not sure what. Like I said feeling a little on the slow side with my strep issue. Last Friday, after a normal dialysis, and hour of being home, dozing off like I usually do, a sudden and overwhelming fever and accompanying aches and pains washed ashore on my body. I do not have the luxury of others who develop these symptoms who just take some fever reducer and "ride it out". Anything can be something coming on to be the heavy duty something or other, like a dangerous bacterial infection, or pnemonia. Any of which means long term care in the hospital, and a non-pleasant break from my life.
I've, of course, become normalized to this "schedule" I have experienced for my own body. I have become sensitive to all that my body does, and feels, for different things. Used to to the up, the down, and the different, so that I can stay on top of whatever needs to be done.
Thursday, May 26, 2011
Running, Biking, weight lifting, stretches, and some yoga movements. Its been a rebirth of the hard core this spring. Am I over training? Not yet. Its been all fun and my body is responding real well to all the different things I'm pushing it to do. Had a five star ride two days ago in a perfectly perfect day when I combined running errands with a twenty some mile ride through trails, parks, and beautiful neighborhoods. Been running every day as well. Just feeling good and gonna ride it till a break comes and calls me out. The trans formative effect of physical activity, done with verve, and joy in the heart cannot be underestimated for the whole of the body, mind, and spirit.
Wednesday, May 18, 2011
I probably written about this before, but this morning during dialysis, while talking to a couple of my regular nurses the issue of attitude came up in relation to ones overall quality of life and health. While the older and longer I have been on dialysis has certainly shaded and allowed differing perspectives on my overall philosophy about this. I have to a degree mellowed on my former "Rocky" theory of health care and personal responsibility, but still I regard ones core belief combined with a knowledge and education of ones personal health and mental situation towards surviving and thriving through any circumstance critical.
When I was four years old, sitting in a examination room at the Cleveland Clinic my kidney doctor at the time came bounding into the room and after and obligatory "hey tiger" began talking to my parents about everything that needed to be discussed and decided as to my care. My parents, grateful and polite, thanked him for all the information, but said to the doctor that he needed to talk to the patient in the room, me. As a four year old, and for all my years growing up I was directly included, and expected, to be a central party in my own care. So I learned to be responsible, and more importantly, aware of my own situation, medications, vitals, how to report my day to day health, and what was critical and how to accept the many forms of medical care that would become a regular part of my life.
I feel just as important as the above story and moral was an intangible belief that I have had, through my parents, my environment, all of it, or something else, that I have always believed in my own self. That I was, regardless of the process, that I was OK. As I am aware that a finger is no more of who I am that a lock of hair, I also know that my kidney, or my physical well being is only temporary, and in essence does not define who I am. By not being attached to the suffering, or the ecstasy I have learned, through hard lessons, that my life is not these "feelings". It does not always work that way in practice, but overall it has helped me through this unique life journey I've been on for almost forty years.
Tuesday, May 17, 2011
Its been a pretty good week as the infection from my freak arm injury has healed nicely, and dialysis has been a relative breeze. Since my ER visit 10 days ago I have run all but one day and have felt that everything is pretty good. My hemoglobin is hovering around 10 or 11 and breathing has been easy as well. I have had some good speed work, as my heart is catching up quickly to what I'm asking it to do. Also I'm on an easy streak with my renal diet and my fluid. When the heart and lungs work everything else is just so much easier to fall in line. It all works together. Except for the interruption in spring here in Midwest Ohio, have had some great outside runs last week, including a terrific bike/run day last Thursday, when it was really hot and humid before all the cold settled in.
I'll keep it a short post for now and come back to soon on a medical history entry, and other new stuff. I have my running stuff on for a workout in the next little bit. We will see if it is in or out?
Thursday, May 12, 2011
I spent last Sunday, in the ER, after what seemed like an ordinary wound developed into trouble. A week ago, while hanging a picture, that is framed with a standard metal frame, fell off the wall onto my right lower arm. Luckily not hitting my AV fistula, but even though it didn't hurt when it happened, my wife noticed that it had swollen freakishly large soon after, and for several days later, it became black and infected. The weekend came, and it got way more painful, and I noticed that my body was breaking out all over with old shingles from a Chicken Pox outbreak twenty years ago. That is not odd, it can happen to many people who have a dormant form of shingles, and through some form of body stress or secondary infection, it can then "come back". It is itchy at its best, and pretty painful at its worst, and looks just terrible. Kind of a biblical ugly. Anyways the signs symptoms were mounting that it needed to be looked at by professionals. Sunday afternoon came and we were all on our way to the park for a Mother's Day cookout my wife had arranged. The day before she and I had done a great 6 mile park run, and even though I felt I labored through it, overall I felt good. So when Sunday came and all the symptoms and signs pointed in the direction they did, my wife and I discussed it and I headed to the ER, while they headed to the park.
Anything simple for anyone else always becomes a mini production for a dialysis patient, and this was no different. It was even discussed about admitting me for this dime sized scar, black as is was, due to it being so close to my fistula. These "infections" can turn bad so quickly due to my immune system being compromised from kidney failure and the dialysis treatments.
Six hours, two IV antibiotics, pain medications, and a fun scrubbing of the infected site later and I was on my way home. Its now OK. It always is. The next day, a bit more wiped out from dialysis than usual, I still did a three mile run, which cleared my head, and body of all the stuff in my blood stream not easily cleared out because, of course, no kidneys to do they job. The sweating and heart rate increase does help though, getting the pain medications, antihistamine (for allergic reactions to the antibiotics), and all the other antibiotics somewhat cleared from my system.
A few days later, I'm fine. I've run every day since and my arm, and body is clearing up nicely.
Thursday, May 5, 2011
One great spring afternoon can make up for even a couple of months lousy weather. Running at the park with its rolling hills, blooming trees and shrubs, blue sky, fresh scents, warmish breeze, sounds of birds and golfers out on the course made it one of those beautiful runs. I've had a few great runs lately, and its days like this that make it come together for those moments of joy.
I would run no matter what, and that is why I've continued to run at least five days a week for over 12 years now, but to be able to have your whole physical and mental states in sync with the environment is a special feeling that makes being a runner special. Its also makes the miles just easier, even when you are pushing it like I have the past five days with 5+ mile runs every time I've headed out. I realized a long time ago that the running log doesn't lead anywhere except to the next run, and the occasional "show run", which doesn't really matter any more than doing the same distance in the park by yourself on a perfect day like today.
Monday, May 2, 2011
In a year period, I have become accustomed to over 1600 blood pressure readings, 300 temperatures, between 45 to fifty lab draws for various results and readings, two needle punctures done for roughly 160 dialysis treatments, 320 weights, 160 lung and heart assessments, 160 or so needle pokes of epogen being injected in the arm, approximately 4800 pills, and 624 hours hooked up to the dialysis machine.
These numbers do not include time spent in the inevitable hospital stays for other complications, or additional medical situations that invariably arise during the year. These numbers do not reflect the numbers that reflect the cost for my care, to keep me alive, to keep the machinery of this life support system to work.
Most importantly, these numbers say nothing of what really is involved in what we do to care and live for one another.
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.