I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Wayne on January 20, 2007, 10:59:25 AM
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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! ;D 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!
:thx; Wayne
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Hi Wayne :waving;
Good to hear your story. Welcome to the family!
Karol
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Welcome to our community, Wayne! And thanks for that comprehensive intro - it is the kind our admin/owner Epoman loves. This is just the place for you to be in your particular condition. We already have quite a few going through just what you are. In fact, one of our moderators is not yet on dialysis either. Hope things work out for you.
Even if you have to go through dialysis, it is not that horrendous these days. You have lots of choices of the kind you can have. At least, in the US. In my country, we only have in-center hemodialysis. But even so, I am still a high school teacher with what I consider a quite productive life.
Please keep posting. Let us get to know you. Ask questions. Check out the Off-Topic section when you don't even want to hear the word 'kidney'. Have some fun in the Arcade. This site is the place to be!
Here is a hug from all of us.
Bajanne~Moderator
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hey wayne welcome to our site, is good to have u, like bajanne said feel free to check us out n ask questions and so forth. enjoy life man n again :welcomesign;
rolando
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Welcome Wayne! I also have FSGS, there are several of us here. Hope to hear more from you- :welcomesign;
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:welcomesign;
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welcome to IHD
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:welcomesign;
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Wayne welcome to our site and I'm so glad you found us. You have to be at 20% or lower kidney function before you can be evaluated for a transplant. I'd start making phone calls if I were you. You need to at least get on the list. Best of luck with having a baby. It is easier for a man to conceive a child than it is for a woman with kidney problems. Your job is pretty easy!! Hope you enjoy our site. We are a wonderful support group, but we do tell the truth....even if it hurts.
Rerun/Moderator :welcomesign;
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Thanks for your welcomes everyone! :) I love that you guys tell the truth Rerun....I do like hearing things "straight up".
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Welcome Wayne, good to have you aboard.
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Welcome! Great intro!
Somewhere on here is a post about a book that gave ways to delay the progression of kidney failure. I have to say, now that I'm on dialysis, I wish I had heard of it sooner. You might want to do some research and see if any of the ideas would work for you. The longer you can delay starting, the better!
:welcomesign;
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:welcomesign; Wayne, glad to have you join :cuddle; the family.
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Welcome Wayne,
I too have FSGS diagnosed in April 2006. What an outstanding introduction.Here you can check out the rules.
http://ihatedialysis.com/forum/index.php?topic=540.0
This is one of the IHD family sites the best search engine. kidneyoogle.com (http://kidneyoogle.com)
You will fit right in here at IHD. If there is anything you need Just ask.
Sluff, Moderator
Bajanne, I gave you this one first. >:D ;)
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Welcome, Wayne, it's good to have you here! :welcomesign;
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Welcome, Wayne, great intro! I felt for you when I read about the Cellcept, I tried that for awhile and it made me so sick, sometimes the cure is worse than the disease!
Glad to have you here! :welcomesign;
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Welcome to the community, Wayne!
:beer1;
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Hi Wayne! I just posted but lost it all .. so here I go again .. Wanted to welcome you and suggest reading a lot of the posts in all the dialysis sections as there is no right choice for everyone but is different per individual preference.
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:welcomesign;
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Welcome :)
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Welcome Wayne. I'm the same age as you and experienced similiar effects with gout. Around 2000 i woke up one day and thought I stubbed my two, I had no idea what happen. For me, I have known about my disease since I was 13 (Alports Syndrome) but didnt think the two were related. Over the last couple of years my function has declined rapidly.
I got my catheter place a couple of weeks ago and start in a couple more weeks. My function is now 7% function.
Welcome to the board!