I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: sickofbeingsick on July 26, 2008, 03:44:30 PM
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I just made 10 years on dialysis in May....and I don't think I can take it anymore. I'm only 37 (will be 38 this Thursday) but I started when I was 27. The docs couldn't tell me why my kidneys shut down--they tested me for every disease in the book and all came back negative. That makes it so much harder to deal with. Everyone in my unit knows why they're there except for me. I am SERIOUSLY considering taking myself off dialysis...It just doesn't seem worth it anymore. Anyway--I'm glad I found you guys--people who know exactly what I'm going through. I hope to get to know you guys and make friends here. Looking forward to hearing from you! Oh and one more thing: I was suprised and saddened to find the owner/creator of this site has passed away. He was so young! Can anyone tell me what happened?
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Welcome sickofbeingsick! We are glad you found us too!!! You will find lots of friends and support here.
As for Epoman, I got here right after he passed so I cant give you any information on that. I do know I am so very glad he created this place!
Have you thought of getting a transplant? I just received a transplant on June 5, 2008 and I am feeling great. I know it isn't a cure, but transplants are getting better and better. Are you on the transplant list?
Please come back often and share with us! :flower;
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We welcome you to IHD please know that we are here for each other. Hope you post often. You can find Epoman's story in the intro section
Boxman, Moderator
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:welcomesign;
Please stay and come here often
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:welcomesign;
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Welcome aboard. Feel free to vent. That's what we're here for (among other things).
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:welcomesign; sickofbeingsick. You have found a great site for information and venting. Glad you found us.
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:welcomesign; Ten years is a long time for anything but especially for dialysis and many of us can relate to your intro. We're glad you found us and I look forward to getting to know you better.
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:welcomesign; So glad you found us.
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:waving; I will probably be starting dialysis in the next few weeks. Although I'm not looking forward to it I know I must do it. I got on "the list" in Feb 2008 and immediately tested three live donors that were subsequently denied for one reason or another. I'm sure I can learn alot from you so please, please, please stick around and share your knowledge. You will love everyone here and make many friends! I'm looking forward to meeting a few of these good people in Vegas in Oct. Maybe you could join us!
Welcome!
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:welcomesign;
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SickofBeingSick - welcome. I'm glad you found us. 10 years of dialysis (I hope they gave you a cake or something!) is tough on anyone (though I'm sure Zach will have a different opinion :) ) specially being so young. My heart goes out to you (and I am 37 going on 38 too so I can definitely relate to that part). You know I don't really know what caused my CKD/failure either... oh eventually they have suggested FSGS but they don't really know why... it's been put down to anything from high BP to getting a uti when I was a toddler and having heaps of operations on my eyes (which are dud) but you know what.. It doesn't really matter to me why... I mean.. I've got it and for me I prefer to focus on what to do about it and a future that hopefully involves a transplant.
I've only been going 2 years so I can't really contemplate 5 times that so you gone through obviously so much. Is there no hope of a transplant (live or otherwise) for you? What have the docs said?
I can understand you wanting to pack it in... all I can really say is that at 37/38 years old there's so much living yet to be had I'm sure.. and who knows what is around the corner? It must seem so bleak for you at sometimes though - I can certainly understand that. Do you have family and friends around you for support?
Please feel free to vent here and hang out with us... we can relate to your situation if not exactly and hopefully can provide support and encouragement.
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I'm glad you found us, too, sickofbeingsick! My husband has been on dialysis since March of 1995, so he's a long-timer, too. He was 39 when he started. Since then, it's been a long, long road for both of us. 43 surgeries, 1 transplant (lasted three years then caught the same disease -- IGA Nephropathy), 21 accesses (fistulas, grafts, permcaths, and PD caths), a pacemaker just last December. I think all of the folks here know the feelings you're having, and many have been struggling just as long as you have. While there's nothing we can do to physically help you, we're here for moral support, encouragement, and a sense of understanding. Remember, we've all walked a mile in your shoes. This is a wonderful place to share, vent, cry, and laugh. You have a lot to offer us, too. Hang in there!
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Welcome to our community! We are so glad you found us too. Our site founder died in his thirties. But he wanted to live. He has a beautiful son, Nick, whom he wanted to see grow up. He put lots of effort into this site. He was always saying he wanted it to continue after his death. And because of all he put in place, we have a site that continues to grow and be a real testimony to his foresight.
I am glad you felt free to vent - we are good at that here.
I am one who feels that we are all here for a purpose, even it at time situations are overwhelming. You never know whom you may help just by being there.
so welcome to our IHD family :grouphug; keep posting and let us know how you are doing.
Bajanne, Moderator
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:welcomesign;
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:welcomesign;
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Welcome Sickofbeingsick..... can I just call you Sicko? You have been on a long time, but on IHD you will maybe learn of other ways like NxStage or in center Nocturnal which will make you feel lots better than the conventional 3 hours 3x week. You speak from the heart and I look forward to your posts.
:welcomesign;
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Welcome sickofbeingsick, good to have you aboard.
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Welcome from someone else who is sick of being sick. Great name choice!
kitkatz,moderator
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Hi sickofbeingsick,
I'm 27 and have been on dialysis for about a year and a half. I just wanted to say don't give up, hang in there I know it's hard and tiring, but just remember dialysis gives us life, think of other people who need transplants and didn't have this option. I thank God for dialysis even if it is a pain in my arm haha. Just think of your family and friends who need you. I'll be 28 on September 24th and wouldn't be here if it weren't for dialysis. Don't give up, hang in there. :2thumbsup;
EDITED: Removed all caps - Sluff/Admin
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yahoo...a birthday coming up... :birthday;
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I just made 10 years on dialysis in May....and I don't think I can take it anymore. I'm only 37 (will be 38 this Thursday) but I started when I was 27. The docs couldn't tell me why my kidneys shut down--they tested me for every disease in the book and all came back negative. That makes it so much harder to deal with. Everyone in my unit knows why they're there except for me. I am SERIOUSLY considering taking myself off dialysis...It just doesn't seem worth it anymore. Anyway--I'm glad I found you guys--people who know exactly what I'm going through. I hope to get to know you guys and make friends here. Looking forward to hearing from you! Oh and one more thing: I was suprised and saddened to find the owner/creator of this site has passed away. He was so young! Can anyone tell me what happened?
Hello sickofbeingsick,
First I apologize to be welcoming you so late. I won't give you a bunch of excuses. I hope you don't give up on dialysis, but it is your choice to make. One thing you will find here at IHD that you can't find anywhere else is everyone knows exactly what you are going through by experience. The Creator/Owner of IHD passed away 2 1/2 years ago and the time has gone by us so fast. I'm in regular contact with his wife (Trina) and his young son(Nick) Epoman passed away unexpectedly from a viral infection that found it's way to his heart and lungs. Epoman was on dialysis for I believe 12 years, in fact the last 8 months or so he dialysized at home on NxStage. He felt so much like he was not tied down with NxStage and he felt much better without as many complications that he experienced doing in center Hemo. Epoman created this site for people such as yourself in attempt to give everyone here a voice to really tell how they feel about dialysis, and to learn and draw encouragement from others in the same mind set. IHD is the number 1 site (forum) when it comes to dialysis and ESRD. You could be a huge help to others when they read your story, because you have a decade of experience, I'm sure there are many stories and experiences you could share that would benefit someone. Don't be a stranger here. read and post often. This disease can make you feel all alone, but you are NOT alone anymore, you have us!
Sluff/Admin
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You and I are the teenagers of the group! By that I mean there are newbies and those who haven't been on dialysis too long, but there are those who make us look like newbies!! I've been on 11 yrs now. 10 of those on PD and now one on nocturnal home hemo. I've been in your shoes but you know what? I am so happy I haven't taken myself off dialysis because I have had so many great things happen in the 11 yrs that I would have missed. They're a really good bunch here. We've all had different experiences of every kind - travelling, swimming, eating, loving, supporting. You will like it here. We don't blow sunshine up your butt. We do share our thoughts and opinions and try to help make dialysis easier for you!! Please stay. You won't regret it!!
PS - if you want a transplant, there are lots of new tricks!!
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:welcomesign; sickofbeingsick!!
Please try to stick it out for a while longer. Perhaps you can try a different type of dialysis? I am pre-dialysis and veteran stories help me to remain positive, even when I think my life will be over and not to even bother wth dialysis. Sharing your experiences is such a great tool for people like myself and those that are new to the dialysis scene. It gives us a "heads up" and tons of stuff to throw at the docs to drive them nuts!! :rofl; You can also learn a lot from everyone here and perhaps a few tips & tricks to make dialysis a little easier for you. :)
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:welcomesign; :bandance;
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Welcome!! It's good to have another member. You'll find a lot of useful information and support here