I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Lori1851 on May 27, 2008, 06:38:42 PM
-
Dustin and I will be going tmrw to talk to his Social worker at dialysis and the Manager. Dustin is tlaking like he wants to get his TRANSPLANT!!!!!!!!!!!!!!!!!!!!!!!!! :bandance; :bandance; :bandance; :yahoo; I am excited and scared. Last time we went through all the transplant center stuff and Dustin lets say was not ready and wasnt as compliant as he should have been. They the transplant center made him sign a contract yes a CONTRACT they he would take his meds like he was suppose to, quit smoking or at least try and not to miss any dialysis sessions. Before anyone comments ;) I feel like the Manager at dialysis. She said there are quite a few that are non compliant such as not taking care of thereselves thats why they are on dialysis. But that should NOT keep them from getting their transplant. Sometimes I think the Dr's wave that magic wand and I know at times they have to. We do not know what caused his FSGS.
He is a 22 yr old wanting to live a normal life like everyone else. All of you I know can relate. We were all young at one time and didn't always do what we were told. lol I am still alil like that ;).
I will let you know how the meeting goes. Last time I talked to the Manager I balled. Dustin is my only child. He is my bestbud besides my hubby. We have always been close and able to talk about anything. There isn't a day I don't pray that Dustin will want his transplant. He is so scared but is so ready to get off dialysis. I put my faith in Christ. God knows how many prayers I have sent up to him not only for my son but for all of you on here. You ahve been a God send to me.
Will update all of you tmrw!!!!!!!!
Lori/Indiana mom to Dustin 22
-
The compliant part seems to be a normal thing with all the transplant centers I went to when I was searching for a transplant center.The center I choose had me sit with a social worker and the coordinator and asked me about how I felt about dialysis, why I didn't go a couple times, and asked about my medication schedule. What they told me was that they were looking for someone who will take care of their transplant and not forget about taking their meds because they didn't feel like it. To me it was no different from taking insulin, I needed that to stay alive and not feel like crap when the blood sugar is high. So if he has made some strides in willingness to change his habits, it will look more favorable to the transplant team that the kidney will not go to waste since there are so many people on the list.
Good Luck
Chris
-
I think the issue with being compliant or not is about someone who's willing to do everything they can to improve their health in order to accept an organ will likely have the attitude to keep on with it once you have the organ. Plus if you are doing things like smoking and missing dialysis and not keeping to the diet or restrictions etc that's putting your body in a worse shape to accept an organ or for it to be a successful transplant. When there's far more demand than supply they really can afford to be picky and chose those with the best chance at a positive long term outcome.. and that's going to be the more compliant patients I feel.
Not saying that I feel non complaint patients SHOULDN"T get transplants - I think everyone should if they can - but when you're faced with options and need to choose - all of these factors weigh in on the equation.
-
I totally agree with all of you. Someone willing to give their kidney the recipient should be compliant. It has taken Dustin a year to get where he actually WANTS one now. The seizures he had in March might delay him I am thinking. Won't know until we try right;)
Have a good day friends!!!!!
Lori/Indiana
-
I really don't understand what there is to be afraid of in receiving a transplant. You are unconscious for a few hours, wake up feeling 100% better, and then all you have to do is take some pills twice a day and live a normal life for however long your reprieve from dialysis lasts. Since living on dialysis is a living death, I can't see that you would lose much even if you died during the transplant procedure, which is only a one in three thousand chance anyway. Renal transplants have been performed since the 1950s and are now regarded as a simple, routine procedure with minimal blood loss.
The 'contract' to be compliant on receiving a transplant is a legal farce, and I regard it as unethical for transplant centers to try to make dialysis patients think that they can be legally bound by it, which is pure fraud being committed against vulnerable people to whom the nephrologists owe a duty of care. First, a contract made under duress is unenforceable, so confronting a patient with the dilemma of signing a contract or facing early death on dialysis makes the contract void from the outside. Second, how would they enforce the contract if the patient broke it by being non-compliant with medications or follow-up appointments after receiving the new organ? Do they propose to take the kidney back? The whole thing is too ridiculous for words.
-
Good luck Laurie and Dustin!! Please let us know what happens.
-
Sluff,
I totally AGREE with you. The manager at Fresenius said there should have never been a contract! She said the social worker and herself will do everthing possible for Dustin to get his transplant. Sad thing is Dustin's friend was a pretty good match for him only thing is the blood type which by what I read can be taken care of by plasmaphersis. Will keep you all updated. I think sometimes Dr's think their God.
Lori/Indiana
-
Hmm, odd to me how Fresinus is doing whatever they can to get him a transplant.
Here, it was up to the patient to contact a transplant center, do all te test, go to meetings, and they only contact the transplant center had with the dialysis unit was for lab results, dialysis settings, and blood samples. I hope you are involved in the process and talking with a transplant center directly. As for a contract, never had one of those either.
Good Luck
-
The transplant social worker was the one that talked to me about compliance. I hope this time around they will help him feel better about the transplant.
-
Jenna had some trouble being compliant with taking meds when she was 15 - 16 years old. The doctor at Children's Hospital said "Well, let's hope she has such an awful experience with dialysis that she will be motivated to be compliant." Our next nephrologist said "Don't worry about her being compliant. That's what she has family for, and the support will carry her through as she matures. Get her the transplant, and she will feel so much better that she will want to maintain it."
I learned to not tell the doctors how she was with her compliancy with meds. She did improve but is not perfect. I did make sure she never missed dialysis though. How would she do without our help? I am not sure.
-
Chris,
Dustin will call the Transplant center. The social worker and Director will help in any way they can.
Lori/Indiana