atheophilus's Journal

Guess my first entry should be an introduction :-) i am 52 (2009) YO man in Texas who is on dialysis because of PKD. I have a rabid hobby of riding bike, like the tour de France people but slower and we don't have mountains to climb in Texas. This consumes a lot of my free time on the 4 days i don't have a treatment and on the other 3 i don't try it though sometimes (rarely) i could. Among my other hobbies are fishing, guitar which i haven't done in over 10 years but still think about almost every day, computer building and repair, and poetry which comes and goes in maddining rushes, as in, i will be able to write them almost like you would a letter where it just flows for a while (months, sometimes years) and then i couldn't write one to save my life for a while. Probably forgitting some but those are the basics.

Was married when i was young, not now, not against it just havent found the mate i need yet and the older i get the more set in my ways i get so it seems to be a long shot now but i still hope.

Am a devout Christian that doesn't go to church...i know my bad but there are reasons that would take a page or more to explain (not hurt by the church and i don't have bad feelings towards them AT ALL)  so if you are interested let me know.

My PKD was painfull since i was a 20 something and there were about 3 times i had blood in my urine, the first because a guy tackeled me in the kidneys and knocked me about 5 feet doing it HOWEVER i played for about 45 min. after that and he hurt his finger and quit to stop the game. So yes i am a hard headed man. :-). Anyway i was diagnosed (ultra sound) in the mid 90s and the Dr. really didn't help AT ALL!! He had NO info for me so i dropped it all and lived my life which has almost always been active. In my late 30s i was still playing tackle football with the young men but in my late 40s i became way less active. That was when i took up riding bike and when the trouble began. At 50 years old, almost on my birthday my kidneys finally failed and as a hard headed man, i didn't go to the Dr. till i almost couldn't walk. When i did go i was on dialysis in hours and have been ever since. At the same time i went they checked my heart as well and it was pumping at 10% , 55-65% being normal (i don't know why 55% is normal, seems like 100% would be what you want but hey they are DR.s) anyway they told me to take it easy. Well when i got home i decided that the heart is a muscle and you either use it or loose it so i went back to riding, slowly at first and gradually built it up to 5000 miles a year, maybe more this year. Then last year the block i had which was 70% became a painfull 90% and i went in to the local Hos. They put a stent in it the next morning, MAN that helped!!! So now i recover much easier on a bike ride, i can climb really steep hills and don't have to stop at the top top to rest, it is much better now.  

So any way that is where i am right now, some dental work (about a week or so away) and i will be on the list for a kidney and when i get one and recover i am looking at riding across America on my bike to promote organ donation. Lot of things to work out though so we are taking it one day at a time, the least of my concerns though is my ability to ride it.

EDIT my heart Dr. told me after a stress test this last Spring that my heart is NORMAL now and he didn't need to see me for a year, the people at the transplant center (Baylor, Ft. Worth) had me see their heart Dr. to be sure and he was impressed as well :-)