Hello Everyone, My name is Wayne

Wayne

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Martin (the snorer) & Mack (cat w/renal failure)

Hello Everyone, My name is Wayne

« on: January 20, 2007, 10:59:25 AM »

Let me introduce myself and tell my story so far. My name is Wayne and I am 32 years old. I was diagnosed with FSGS in early 2001. I was searching on Google last night to see if there was anything new as far as treatments and etc. and ran across IHD. I read many of the postings for a couple of hours and was pleased to see many others who have FSGS...not that we have it of course, but that there is something like IHD out there for everyone to come together. I had another follow up appointment this week and my creat levels have risen to around 3.5 and I am functioning at around 21-22%. I know in the general scheme I am not in too bad of shape yet, but it was alarming since my last appointment (2 months ago) I was at 2.4 and 33%. My doctor mentions dialysis, but he says he would much rather me have a transplant. I was interested to see what the members of IHD had to say about dialysis because I can honestly say that the only person that I have known well who has been on dialysis is my wife's grandmother. She has basically told me nothing but horror stories. Unless something has changed recently, she was going to dialysis 4-5 times a week.

Back to my story....I started having gout attacks in 2000. I can thank my father for passing that on to me, of course, he does feel bad about it. Especially since I was about 25 when I started having attacks and it is typically considered an "older man" disease. Anyway, my PCP ran bloodwork to check my uric acid levels to see if it was in fact gout. Well it was. Over the next year I went to see my PCP for colds and other things. Every time I went he would take blood and a urine sample. I had a good doctor/patient relationship with him so I would always give him a hard time for doing this every visit. I had never been sick and had no reason to think that I was going to be sick. I can't say that I ever exercised much, but overall have taken good care of myself. I have always been a non-drinker and non-smoker. Well, after a visit in early 2001, my PCP called me at work which I immediately thought was odd. He told me my protein in my urine was elevated and he wanted me to come give another sample. He said he wasn't too concerned but wanted to check it again. Needless to say, he got the results back, and called me again. He was setting me up with a nephrologist. I still wasn't too concerned, because again, I have never been sick with anything more than a cold.

I go meet with the neph, he runs some more blood work, and says that he feels it could be FSGS but would need to do a biopsy to confirm. He said that FSGS in someone my age and ethnicity was rare but he didn't discuss the disease much because he wanted to confirm what it was. Probably almost everyone reading this has gone through a biopsy so I won't bore you with the details. Except I do want to mention that they didn't give me nearly enough anesthesia...I can pretty much say that I felt every bit of it. Thank God I have a pretty high pain threshold. The biopsy confirmed FSGS and my neph called me back in to discuss it. I have a wonderful wife and to date she hasn't missed one appointment. I am always glad that she is there, because like most males, I only hear what I want to hear and she will often have to bring me back to reality. As he explains the disease and how little they know about it I became more concerned but it was when he said that there is no cure so you will eventually either be on dialysis or need a transplant that I was floored. My wife and I had been married a few years now but in my opinion we were still honeymooning. We were planning on having kids...how would this effect it? Of course, all kinds of questions started coming up like, why would I have to deal with this when my life was really starting to take off? I had just finished my BA, was working on my Masters, and was in a good job that I really enjoyed. I guess I should be fortunate that it didn't arise earlier in life.

Long story short, over the last few years, I have pretty much maintained around 2.5. I tried the steroids, Cellcept, and a few other meds, but nothing improved my functioning levels. Like many of you, which I read about last night, the side effects of the drugs were much worse than anything else. While on steroids, I was either full of energy and pretty much couldn't lay down to go to sleep at night, or I was totally lethargic. To me the Cellcept was the worst. My neph put me on an extremely high dose and the first couple of weeks, I would almost blackout at least twice a day. Needless to say it made it hard to get any work done. After being on steroids, my neph mentioned that there were other meds, but that several of them had high risk of sterility, which since we were trying to have kids that wasn't an option. In the meantime, my wife was diagnosed with a rare disorder which was going to make it much more difficult for us to conceive. We have done several rounds of in vitro. We conceived once, but miscarried about 2 months in. I have to say that the fertility issues have been more of a concern to me than my FSGS. I know how much my wife wants a baby and how much I want to be a father myself. Knowing that I will probably go the transplant route, with all of the post-transplant meds, the race is on to conceive before we get to that point. I always joke with my wife about "in sickness and in health". She has a good sense of humor, I guess she would have to living with me, but I tend to make jokes when I am nervous or upset. So needless to say I have been a total riot the last few years!

I am really excited to be accepted to be part of the IHD community. I realize that I am not on dialysis, but I have already learned more from everyone's postings than from other sites. I think it is always great to discuss what you are going through with others who are, or have gone, through the same thing. I just know with FSGS, I haven't run across anyone in my neph's office who has it. I know it is rare, but I wouldn't have thought it was that rare. Anyway, again, I can't wait to read more and more on the site. Thanks again for accepting me!

Wayne


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Happily Married for 11 Wonderful Years!!! :-)
3/01 diagnosed with fsgs
7/07 listed
4/08 fistula surgery
10/08 pd catheter placed
12/08 started pd
2/09 started hemo

okarol

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