Hi Dominique! Welcome to IHD. I'm the other member Richard mentioned, haha. I was really excited when I saw your post...and found myself going, HEY WAIT!? This sounds familiar! Hahaha. How small the world is, huh? Feel free to talk anytime, either via this post, another post, or a personal message. I'd love to have a chat with you. -Sam
Hi Dom and welcome to IHD. I was also 24/25 when I had to go on dialysis. IT was also a surprise as I was not feeling well and they kept treating me for an ear infection (which I obviously didn't have) I'll say it again..... AND they say we have the best health care in the world"Idiots! Anyway, I'm glad you found us. Hang in there! Oh, by the way I'm almost 50 now. And doing well on nocturnal hemo. Rerun, Moderator PS.... Did you know February 2 is Groundhog's Day? Have you seen the Movie?
Hi, and welcome!I think you are gonna be just fine. You are smart, young and in relative good health, but more importantly, you are doing the sucky things you have to do to stay well. So, well done you!It's great that you want to be well educated about kidney disease, but I will warn you that the more you know, the easier it is to get scared. Oh Lordy, I have scared the bejeebers out of myself on SO many occasions after reading one small little bit of info I didn't know before. I've discovered that all of the things that can happen to a kidney patient are NOT going to happen to me and they won't ALL happen to you, either, so out of all of the information you gather, do keep in mind that statistics can't ever tell the whole truth.It does sound like nocturnal might be ideal for you. Check it out and come back and tell us what you think about it. Not only will it free us more time for work, it will be better for your body. The goal is to keep your body in tip top shape so that you can take full advantage of a transplant.It's not easy to ask for a kidney because, like you say, it's not like asking for a stick of gum. But there are all sorts of articles and stories on this site that may help you in that regard if you should decide to pursue it. Remember that being able to literally save someone's life is a transformational act. If one of your friends or family members want to know what it is like to be a true hero, donating an organ is a way to find out. Try not to deny people the chance to save you. I'm so glad you've joined us!
I had a transplant for 17 years. Forgot to tell you that part. But, I have a friend who has been doing dialysis for over 20 years no transplant is is still very much alive and active. She just never wanted to deal with all the transplant drugs so she chose hemodialysis all these years.Rerun
Hi Dominque, Don't get down. I know exactly what you re going through. I found out about my kidney disease when I was 25. I am now 30, and I have every intention of seeing 40, 50, 60 etc. However, I have had to put some limits on what I can do. I just take it a day at a time. Where are you in school. I went to Peace in Raleigh.Take care,Katie
i have been going over and over in my mind how to ask someone for a transplant...so far i know maybe two people that would definitely do it...however there is question as to whether there blood type is a right match..and also if their health is good enough..one is overweight and the other person has a family history of high blood pressure....
so why is Nocturnal better for the body? (sorry i am like a first semester freshman, second day of class still looking over my syllabus with this kidney disease thing lol)
Dominique, the one crucial thing to remember is that whereas normal kidneys work all the time normalizing your fluids and cleansing your blood of toxins, standard dialysis (in a clinic, 3-4 hours a time) will never be able to do the job as well as native kidneys. So, the trick is to dialyze more like your healthy kidneys would, ie slower and more often. That's "optimal dialysis" as opposed to "adequate dialysis". The downside is that it means more time dialyzing which is burdensome. The upside is that it is less traumatic for the body and it is more efficient; you have a much better chance of being able to eat and drink more normally. With nocturnal dialysis, you would dialyze as you sleep, which would mean that you would dialyze for 6-8 hours (this would be determined by your neph). Clinically, nocturnal dialysis gives results as good as cadaveric transplantation, and that's pretty damn cool! There are so many things to think about, and it can get overwhelming. I've had fsgs for 20 years, and I'm still feeling very overwhelmed and I still find all sorts of scary stuff on the web to obsess about. There really IS such a thing as too much information! No one will be able to tell you how long a transplant will last. Everyone has a story. One IHD member's transplant lasted literally only a few hours. My husband's secretary's husband is diabetic and has had a transplant for 20 years. He is one of those people who can't be arsed to take care of himself, but that transplanted kidney doesn't seem to care one whit. But if your doctors are telling you that it might be a good treatment for you, well, they have no reason to lie. That's their educated guess, and it's as good as you're gonna get. If there was a compelling reason why a transplant would not work for you, I'm sure they wouldn't let you on the transplant list. You could go ahead and be evaluated, get on the list and at least be accruing time while you have more of a think about it...
When I went to a transplant seminar put on my our renal dept (back in 2005 or so) their answer to this question was to NOT ask. The idea being, yes let people know you need a transplant, but don't ask directly, don't pressure people (or at leastpossibly make them feel pressure).. let it be for them to step up and come forward. I suppose the thinking there was that if they come to the decision themselves it's more natural and not forced in any way.I know that seems a bit odd but I understand the rationale behind it. They were very strong on not pressuring a potential donor.
I Hate Dialysis Message Board
I Hate Dialysis Message Board
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