I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Auntie G on August 30, 2011, 08:24:09 PM
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Hello everyone,
Well, here is my story. I have a nephew that is 27 years old and he is on Hemodialysis. August 28th marks 2 years he has been on it. He was born with nephrotic syndrome and to make a long story short he did not get the medical care that he needed. He means the world to me and I would give both of my kidneys to him if I could. :lol; Dr.'s say he is non-compliant and is not currently on a transplant list. He has been through hell, the dialysis makes him so sick he is in the hospital more than he is anywhere else. He tried PD it failed. Family?? Well as supportive as they can be, but most don't want to deal with it. Kind of the attitude that it is his problem and he can deal with it. I think I can handle all of it and try to take as much stress off of him but usually we both hit a brick wall :banghead; Thank God he has a girlfriend that has stood by him and tries to do the best she can for him. He doesn't drive and she is always there for him. He just got out of the hospital today :2thumbsup; he was admitted because he can not stop throwing up. :puke; This has been going on for months. He was told he was addicted to pain meds and needed to just go through the withdrawls. Of course the Dr's had him in the hospital for 3 weeks giving him injectable morphine every two hours. So we went with that explanation. Turns out not to be the case!! He has lost a lot of weight (was 198 lbs now 150 lbs)and today was told he needed a pace maker in his stomach?? That this was all a part of kidney failure? Needless to say I feel like we are chasing our tails and getting no where. I am married have no children of my own and a husband that tries to by understanding, but well you know how that goes... I just wanted to have a place to go to vent and just knew after researching that this was the place. I read a lot of the post on this site and have gotten a lot of great ideas from them. I'll stop for now, goodness knows I can go on and on!! thanks for taking the time to read my post and I really look forward to chatting with you. G
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:welcomesign; and i love your intro :2thumbsup; And what a wonderful Auntie you are! Beings im all wore out from our day, im going to leave it at that as my fingers are really going all over the place and then having to retrace themselves..lol You've found a great place, you are so welcome here, and i hope you get all ya need from it here... :grouphug; and see ya later :flower;
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holy cow and welcome auntie! hey you came to the right place.
i have never heard of a pace maker in the stomach? anyone else?
my first thought when i read your post but maybe he could look for different doc/clinic?
something doesn't makes sense. bless you and the GF for being there for him! he is awful young to go through this. i will tell you, there are some true experts here. ask away and :welcomesign; :cuddle;
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I know it sounds stranger than fiction! We r in a small town and only have 1 neph Dr. A primary care dr would not touch him So he moves about an hour away to where there r now 3 neph doc's and one dialysis unit. The techs are not very nice but he likes one or two of them. I'll keep looking till I find a doctor that will listen. Problem we face is my nephew thinks if he ignores the kidney failure and high BP it will all go a way. In his mind what is the worst that can Happen he is only 27 after all :sarcasm;
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I've never heard of having stomach problems like this because of kidney failure. I guess it is possible; all kinds of freaky things happen in kidney failure, but this does sound odd. It frankly sounds to me like his docs don't know what the hell is going on so might as well use kidney failure as the default answer. Someone else on this forum might have more experience with this.
If your nephew is getting crap treatment, I'm not surprised if he is "non-compliant". That's a terrible label and is flung about too easily, especially by docs who are frustrated by not being able to find answers to a patient's odd symptom.
So, let's start at the beginning. Is your nephew interested in transplantation? Would he be a good candidate, ie, is his general health stable enough to be able to withstand surgery? If he IS interested in transplantation but is not eligible, what does he need to do to become eligible? One thing he will have to do is get out of denial. If you ignore this sort of problem, it most definitely does not just go away.
By the way, welcome to IHD! Your nephew is so lucky to have you on his side. He has had a truly tough life, and I hope things will get better, but he will have to work hard to make sure they get better. I know you can help him, and we can help you!
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Welcome to our community, Auntie G! I totally understand your feelings about your nephew. I have twin nephews, sons of my sister who passed in June. Even though they are in their 40s, I still feel I have to protect them!!! I am so sorry to hear of all that he has had to go through in his short life. Thankfully, you are there for him. This is the greatest place to be for anyone in any way connected to the renal challenge. We have even become a genuine family :grouphug; So feel free to express yourself. We have an excellent section for caregivers which you can check out. Looking forward to hearing more from you.
Bajanne, Moderator
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Oh, Auntie. :grouphug;
I wish I had an auntie like you. :cuddle;
:welcomesign;
Aleta
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Thank u all for ur kind words. To add a little information my nephew is interested in a transplant and knows that I'd step up in a minute to give him a kidney. He is in good health, well besides the obvious side effects of renal failure. He believes that a transplant will fix everything. I try to tell him there is A LOT of responsibility wiu a transplant too. Life will not go back to the way it use to be there will always be meds to take, which he hates taking meds. He is still raging against the machine, problem is it's the wrong machine! I try to tell him to talk to his dr's about how bad he feels. But unless I go and jump up and down in front of the docs nothing changes. I can't say j know how he feels because I'm not in his situation. He has to make his decisions even if hey r nor what I would do I have to accept hat and try to encourage him, just be there for him. I afraid that he is going to wait too long to and he will die! Frankly that scares the hell out of me. But it's not about me. See IMO my nephew is trying to live his life as fast as he can because he does realize he severity of his situation. He has tattooes everywhere which scares and intimidates most of his medical staff. I even had a dr tell me if I wasn't with him he wouldn't treat him?? Really I know I'm biased and I love my nephew but that is rediculous ! Sorry I'll get off my soap box, I'm at work and should be doing work not typing on my phone. LOL. :stressed; :shy;
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I even had a dr tell me if I wasn't with him he wouldn't treat him??
Really? Wow. (Because of the tats or because of his alleged non-compliant attitude?)
:welcomesign; Auntie G! Have you mentioned this site to your nephew or his gf?
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Yes I have mentioned this site to him. I tell him how great it is and even bought him an I-phone so he would have access to the web. I'm going to bookmark this site and see If he'll look at it. I too was shocked about the tat remarks he's even been told that a vein can't be hot because he has too many rats on his arms so they put the IV in his thumb :waiting; I'm going to buy him a I hate dialysis t-shirt , he will wear it to dialysis. :rofl;
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Welcome Auntie G, we are so glad you joined us. You sound like the aunt we all wish we had. :cuddle; I feel so bad when someone so young is dealing with this disease. It just doesn't seem right. I applaud you for stepping up and wanting to help him. This is a tough disease to go through alone. The caregiver section might help you -- lots of wonderful people who are helping someone special in their life. And I think your nephew could relate to the others here near his age. Maybe it would be good to talk to others who understand what it is like to be 20 - 30 ish. We look forward to reading more of your posts. Ask any questions you think off. Someone will have an answer or a suggestion. It is a great group of people. :2thumbsup;
paris, Moderator
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:welcomesign; Auntie G...my real name starts with a G also and I adore my nephew and my nieces. Your nephew is lucky to have you in his corner.
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:welcomesign;
I hope you can find some answers or at least some good suggestions here! I hope you can convince him to join, too!
jbeany, Moderator
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Auntie, it would be great if you could get him to peer in on this site! There are people younger than him on here that could really relate to his plite! I pray he gets courious and joins!
What an fantastic Aunt you are, and he is so blessed to have you!
lmunchkin :kickstart;
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Welcome Auntie G. You have found an excellent support forum and a forum that has some very good information available.
When we were young we thought we were indestructible. But your nephew has to make the choice of being treated or to make plans if the worse happens. Where do you live? Are you near a university center?
Blessings....
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We live in New Mexico and the closest University is in Albuquerque. This is where he went when he was a baby for treatment. I have taken him back and his old dr was going into retirement agreed to see him and stay on as a consultant on his case after retirement. Well, My nephew of. Purse would have to move to so dialysis. He tried the PD but it failed and he doesn't want to move? He's on SSI only gets $700 a month so moneys an issue.
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Yea, money is always an issue for alot of us, its sad, but so true! Just be there for him! That can mean so much, when all is said and done, he will know that you are there for him!!!!
lmunch :kickstart;
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:welcomesign; Auntie
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:welcomesign; Auntie G.
Boy, can I relate. I fought and put off dialysis for a year before finally admitting that I needed it. I still hate it! :lol;
I do understand his denial.
I was shocked to hear about the tattoos being an issue! At my dialysis center there was a tech. He was a 32 yr old young man with a shaved head and tons of tattoos. At first glance, he was intimidating. (He was also 6'5') But he was one of the nicest, compassionate techs I've ever had. Sounds like the people you have had to deal with are just plain ignorant. As "medical professionals" they should know better! Shame on them!
He is very lucky (I'm sure he knows it even if he doesn't say it) He has you and his GF.
Even if you can't get him to come here right now, you keep visiting because there is bound to be someone that can help. Even if it is just a word of encouragement!
BTW - What part of NM are you from? I have relatives in Albuquerque and friends in Las Vegas (NM).
:grouphug;
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We r in Alamogordo. He actually has a tech at the dialysis unit that he really gets along with. They fired a couple of the non compassionate one he has been going every scheduled time and is doing a lot better. His vomiting has pretty much stopped. The fluid over load appears to have been the problem. He actually gained a few pounds. :2thumbsup;
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:clap; glad to hear he's been going and doing better. Sometimes it's hard to admit that D does make you feel better! :lol;