The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Monday, November 22, 2010

Finding a Center

I'm currently enrolled in the Transplant Program at University Hospital in the Upstate Medical Center here in Syracuse, NY.   I live in Syracuse, and all of my family does too.  So, I thought it was important to get enrolled in a transplant program here, in my hometown. 

However, after almost four years on the waiting list, I've been looking into going to a larger, out of state center.  My wife has been gung-ho about the idea, researching all kinds of transplant centers all over the country.  We've been mostly looking at places on the East Coast, so we can stay relatively close to home - but there's some centers out there doing amazing work.  And I'm excited about the prospect of working with one of them - my chances of getting a transplant are much greater at some of these places, and I've been waiting so long - too long, I feel, and I really, really want to try another transplant so I can move forward with my life.

Traveling for health care is a scary prospect, though.  So much to consider - travel expenses, living in another city for a short period of time - my wife has a career here in town, all our family is here.  But people do this all the time - I'm excited, because I think I can put those fears under a blanket, finally, and go for it.  I've got this fire burning in my soul - a passion for life that just can't be quenched, and even though it's severely stifled by the dialysis, I'm still burning to be a better person, a healthier person.... and it's that passion for life that makes one face their fears, put them aside, and do what's right by them.  I haven't always been the best at facing up to what scares me - an ostrich with his head in the sand, perhaps.  But I've gotten better because of my illness - I've learned how to face what I once thought was the unfaceable.  But, man, I couldn't do this alone. 

People often attribute "strength" to their mate in times of trouble - and in the past, I admit the cynical part of me would scoff at this at times.  I just didn't believe that some people were sincere about it.  I felt like "I owe it all to my love...." was bandied about, like a bottle of ketchup at a Fourth of July Barbecue.... but I can honestly say, for me, now - that I don't think I'd have to courage to try and leave home for treatment if I didn't have Jordan.   I'm so unbelievably lucky - having someone not only stand by you during something as maddening as all this, but to be encouraging, supportive and loving... that doesn't come around often enough in this life.  I'm so glad she clung to me when she found me, and I'm glad I bonded to her.  She helps me find my center.... and now, heh, she's helping me find A center....

So, we're still looking now, and trying to decide - but I'm excited about the prospect of working with some other doctors and centers - many of them are very excited to work with a patient like me.  Which makes you feel good, because as a chronic patient, sometimes you feel more like you're a number and somebody's meal ticket than a sick person.

So, here's to the holidays - and the hope and joy that come with them.  I know I'm filled with a new hope this season, and here's to hoping that your holidays are filled with, well, at least good tidings.  I know sometimes that third helping of mashed potatoes is never the "awesome" idea it seemed to be when you scooped them.



  1. Today's post reminded me a lot of Michael J Fox's "Always looking up, the adventures of the incurable optimist" which, I think, you should give a look at. I know it's not quite the same disease at all but maybe you can relate to it better than I did. That said I related to it a great deal. Keep up the enthusiasm and let me know if you're looking into Canadian treatment centers.

  2. I found your comment about 'courage' in association with renal failure to be quite interesting. Since we patients and our support persons are compelled to endure horrible things by the disease, everyone imagines we must have great courage to cope with all these challenges. But the fact is, we are terrified and would gladly flee from these horrors in utter cowardice if the threat of death as the alternative weren't holding us in place.

  3. Right, but what is courage, honestly? Yeah, we're held in place because of the threat of death - and even though we would flee in cowardice, we don't. And that's courage - not necessarily the flowery, heroic version everyone thinks of - but true courage.

  4. Steve - listen to your wife (she is smart). The traveling may be tough, but you can do it man! Think about the possibilities that will be open to you. Also, if you end up in NYC, I will visit you every day to the point of annoying you... that is a promise!!
    Greg Goldstein

    PS: keep up the good work. It is amazing to hear your entire story, after only catching bits and pieces in the past

  5. You should do it! I wonder if they have any good centers in Buffalo, it's not the most glamorous change of pace but you'd have some family around!