Sunday, July 6, 2014

A common refrain, "its been a long time since my last post". For those who know me somewhere besides here in this blog, it will come as no surprise that, yes, I am still alive. The past several months since my last post (I guess in September) have been uneventful health wise. Everything physically has been humming along and dialysis has been very good. As of this coming month it will be a full two years without any complications which, in the past have sent me to the hospital for an extended stay. As I stated a while ago, increasing my time to four hour treatments from three, has made all the difference, I believe, in stabilizing and extending the day to day benefits to be has from hemodialysis. My overall physical stamina and strength have truly never been better, as I continue to run at least 25 days a month, on average, with 130+ miles each month. With the summer upon us here in Ohio, I am also swimming, biking, and as promised to my wife, including some weekend day trips in the schedule. Our personal life has changed around here as our eldest daughter had a baby over the winter and we have fallen in love with her. We watch her several days a week and also take her from time to time for other outings because it is simply a joy to share "baby moments" together. I myself had never had children of my own, so sharing our granddaughters life has really filled that lost spot in my life.

With all the other children who still live at home getting older, my wife and I find that we are truly reflecting on what we want to do for ourselves in the next years to come. By no means are either one of old, 38 and 43. So as long as my dialysis and future medical demands can be scheduled and met appropriately, we are, I mean I am feeling much more confident to think larger about the possibilities of life, even with a dialysis schedule. I think this comes from not a place of being unsatisfied, or sad about where I am now, on the contrary, it has come from a deep joy of my life and my place in it with all the responsibilities I currently have. In fact I have started to work as a patient rep for my unit to reach out, just to listen or guide, other patients through this dialysis lifestyle thing, for the good or the bad. I have been extremely blessed to be able to experience dialysis and all the accompanying issues of being an ESRD (end stage renal disease) patient as I have through the years. But I am acutely aware of how fragile my good health, or my fellow patients on dialysis can be. I have said many times before, this is something I do, it is not who I am. That would go for anything that one feels defines them through life, that otherwise is, in essence, temporary and impermanent in nature.

Have a wonderful summer. 

Thursday, September 19, 2013

My wife has begged me to go back to my blog. She says regardless of what doubt and cynicism I may have about its impact on other dialysis and kidney patients, (or any others for that matter), it is important to show that life with a chronic life altering disease can be an enriching experience. It has been about eight months since my last post, and I realize that there are a couple of milestones in my life to to report. This has been the longest period in the nine years of my dialysis life without any serious illness requiring the obligatory hospital stay. In fact, it has, as of this date been over 13 months of uninterrupted strong health. It sure makes things easier, not having to be starting from scratch every three or six months after some sort of infection or other malady. By scratch I mean just normal activity as well as my running. This year has been an utter joy on the running front, in that I have, without deviation, run a strong and steady 120-130 miles every month this year, with six day a week training schedule. Even with a couple of blips with my hemoglobin dipping, the runs overall have been terrific, and satisfying, physically and mentally. I'm on target for a 1400 mile year. I strongly believe that the decision to increase my dialysis run time to four hours has had a good deal to do with as not only have I stayed infection free, but my monthly lab numbers, and my blood pressure have been very good, and consistent for the past two years. In fact my blood pressure has been such that I'm on less than half the medication from even a year ago.

Personally, while I still struggle with some of the inconvenient aspects of dialysis and the time and financial constraints that entails, overall my life, and the life of my wife and kids is very good. Our middle daughter received a full Lacrosse and academic scholarship to attend college, and our youngest son continues to excel and all sports, and school. It is our hope with his talent to one day see him putting on a college hat in front of the cameras as he makes a public commitment to college, like his sister had the privilege to do, to the incredible pride and joy of my wife and I.

I wish all the best.


Tuesday, February 26, 2013

What it means to me

I've been thinking quite a bit lately about just what it means to cheat. I talk about this because as a dialysis patient with a legitimate medical necessity for the constant use of EPO, I find, that the one sided    debate on the subject of this and other "performance enhancing drugs" to be illogical, ignorant, and in the larger historical picture, unsustainable.

Lance Armstrong has been unfairly condemned. History will, in my opinion, show, his and other athletes of our period to be mischaracterized as "cheaters".  What is being achieved by the increase in ones oxygen carrying capacity through the use of hormone, EPO produced naturally in the body by the normally functioning kidneys, and allows for increased vo2 and cardiovascular performance? In, reality, nothing. One who has never run a marathon, or cycled a tour, could possibly achieve anything close to the achievements of one who trains hard, and has the skills to perform these feats of human physical prowess. Just as the act of increase in muscle mass through various steroid or other methods cannot make an average joe into a football or baseball star, real talent, real hard work, and real inherent skills still play the most important role in making greatness happen. One must believe that they are great in order to be great. No amount of special PEDs will or can make that happen.

Many would say that I have in fact missed the whole point of the argument, and the outrage regarding the issue of enhancements in the pursuit of performance. On the contrary, I believe that the current state of affairs regarding this will, over time be shown to be much ado about nothing on the one hand, and an ignorant witch hunt on the other. The real question is not one of unfair advantage, but one of acceptance of human ingenuity towards his or her self expression and improvement. Isn't that in fact the  entire thrust of humankind? To be smarter, to be healthier, to express our limitless potential as we expand our own boundaries and definitions of what we believe we are capable of? In the natural pursuit of finding the limits of our, creation, will we, and certainly have made a multitude of mistakes, but that is our special gift we are given as human. Not just that we are constantly discovering and creating new ways to express and perform ( many species do this), but rather our ability to learn, to self adjust, and reflect on ourselves.

We have always allowed certain "performance enhancers" in sport and in normal life. Just as we have made arbitrary decisions as to what we deem allowable drugs or what not in society. A cup of espresso before a race, a regimen of vitamins, minerals, and supplements ( legal and over the counter at any drugstore) during training, steroids given by a doctor to deal with inflammation, and the many many new cutting edge procedures and substances be discovered and utilized to increase human performance. Is cheating the real issue?

Lance Armstrong received, I am sure, many of the things legitimately, such as blood transfusions, and EPO as a normal parts of the cancer treatments and remedies to those affects. He did, and I do acknowledge that from a strictly medical standpoint he no longer required these treatments once he had overcome his ordeal. However, simply the use of these should in no way diminish the fact he first believed, then worked harder than any other human on the planet to achieve the acts documented in the French Tour de France.   Every athlete at that level is already world class, and on an otherwise equal footing. But equal footing does not mean that all the participants finish the race at the same time, otherwise it wouldn't matter at all. In winning is in itself the inherent fact that one athlete has an advantage over their competitors. What that advantage is can be, and should be, defined more broadly and with more reflection than it is now. A strong cup of coffee with caffeine can give the body an advantage over an equal physical specimen. We have just drawn the line at this time what is unfair or not. But don't do not fault the greatness of the accomplishment. Is it not great that he, and others have shown what can be possible? The inevitable future involves more "enhancements" for the human to perform, and to live healthy longer lives. We just have to catch up with our ideals of what we accept as "real" human achievements will be defined as.

I am, as many of you know, from reading my blog, or knowing me personally, that I am a runner, while also being on kidney dialysis the past eight and half years. Prior to that I received two kidney transplants early in my life. I am not ashamed to say that it is clear to me from the facts that I am easily one of the best athletes on this planet. It is very difficult to admit this, for I feel my ego rearing its terrible head. But it is important to share with others, not only in my physical condition, but others who suffer from one malady or another, physical or emotional, of what is possible. It does not come from simply having my dialysis treatments, my EPO, and the support, family and medical staffs that I am blessed to have around me. It really started when I believed in my unlimited potential to express what I knew I was capable of. Even in the face of what had never been achieved. Eight and half years, two marathons, roughly 10,000 miles of running later. I have to know that it has not been for naught. 

Tuesday, January 22, 2013

So far so good

It's been over a month now of doing my four hour dialysis regimen and this winter has been the best I've had in 8 years of treatments. Knock on wood so far this winter I have had no sicknesses to speak of.

For the past two months I've been averaging about 30 miles a week running as I have committed myself to train for the GlassCity marathon in April.

Fancy new shoes, four hours of dialysis a day, and feeling good is a magical combination.

I continue to show up every day to do what is required. I will continue to post my weekly mileage and training highs and lows through April.

Sometimes I become greatly ambivalent about my personal situation and just wish that I had more money to buy a nice car. I just watched a documentary about the artist Wayne White where he discussed how difficult it is for an artist to expose himself to the world. To say hey look at me about the most intimate details of your creative life can make one shameful and fill them with self doubt. My intimate life is my creative life to stay alive. I see people dying because they lack the belief that they can survive and thrive in their suffering. It's okay to live like you're already dead.

Don't let doubt insecurity and a lack of knowledge be filled with fear and the inability to believe that you can continue on. Fear will cripple you and fill your life with blackness and sorrow.

Tuesday, December 4, 2012

Just embarked this week on a new dialysis schedule. After eight years of the same days with the same times, I have asked, and been granted, an additional hour on each one of my three days a week. Whereas I was three hours MWF, I now am doing four hour treatments. It will be a real adjustment, as I discovered yesterday on my first of this new time.  With something so regimented as dialysis, and with eight years of the same thing it was a bit uncomfortable, mentally and physically, doing the new thing. I have been trained to go through the three hour treatment over the years, and realized that even that additional hour with take some time getting used to. I asked for the additional time for my overall health. It has been clear from all the research I have done, and after talking to my doctor, that all patients can benefit from as much time as can be reasonably achieved on the machine (dialysis). Just like having a functioning kidney in ones body perpetually, the machine working more can take the place of more of the lost natural function. With my personal goals and responsibilities, I felt that overall I would benefit from the additional time. Feeling better over time, less infections (perhaps), and less mortality rates (not that I am facing imminent death). So the sacrifices seem worth the discomforts and adjustments.

This last week I also received good new regarding a heart ECHO I had done in response to some mild concerns that my doctor had on my overall heart health. It is not uncommon over time, due to previous or consequent events with the dialysis lifestyle to face cardiovascular problems. Even with my exceptional physical regimen, things can still be off, so the ECHO was done to see what was up. By the way, I have had at least 20 ECHOS over the last eight years and the only abnormalities have been  connected with infection issues, which are common in dialysis patients. So the point of all this was that my heart looks strong and normal. Good news, so knock on wood, I'm having a good couple of months.

Wednesday, November 14, 2012

Just a test

I'm just testing a new way to enter into my blog. If this works I will be entering more often than I have in the past. The wonders of a mobile phone combined with speaking dictation have made this possible.

I bought an iPhone about five months ago and I'm still discovering layers of the things that I can do with it. We will see if this allows me to dictate more entries as I think of things while on the go.

If you are one reading this thanks for putting up with what is really just a test. I look forward to more entries in the near future.

Tuesday, November 13, 2012


I am, I believe a naturally vain person. Ironically it is difficult, however, to write about myself in this blog. I have felt for a while that I don't really have much of any importance to share. This perspective has driven me away from any regular postings. My life situation is such that the monotony of it all lures me into a sense of feeling that why would anyone care about it all.

That includes, of course the dialysis schedule. Three times a week for three hours each. The running and other physical fitness parts of my days. I do, and I have had to assure many, that no matter what, I still run six days a week, about 20-25 miles. The taking care of my family, the househusband I have become, and the other odds ad ends that I complete each week. I read quite a bit, recently finishing the novel Cloud Atlas, and beginning the Lincoln, Team of Rivals, book.

My wife has told me and my experiences have shown that this blog does seem to speak to many, who either are going through dialysis and kidney disease, or just the universal angst of life's difficult journey.  I do hope that my experiences and knowledge shared can find some home with others who are interested. Again, though, I emphasize, it is sometimes easier for me to just plow through than to share it all with others.

As of October 27, it has been eight years being on dialysis, and waiting for a transplant. In no way do these time markers depress me, so much as I find myself reviewing the period and saying, where does all the time go? My health, overall, has been steady and good. Little things pop up, emergency room visits, and being tired and worn out from the process are inevitable. I have realized that it all passes and I am where I started again, and again.

In the spirit of the promise I made to my wife, at least once a month I will endeavor to share, at least, my current state of health, both physical and mental. Having writing, even this, while my kitten has continued to force her way on to the keyboard, and my lap, has made me feel OK about writing in this venue again.