What to Do - I'm rejected for transplant due to "non-compliance"

[VintageVera]

I'm looking for anyone who was rejected by a transplant committee and appealed. I was rejected by both transplant centers in Oregon (the second time I believe they just rubber-stamped the first decision as they didn't even bother writing me to say why). I need help as I have decided to appeal BOTH decisions. I am a healthy (except for the ESRD of course) 56 year old woman who was rejected (I believe unfairly) for non-compliance. And please, no recriminations. I've had enough of those. Asking for help.

[cattlekid]

Hello - I am so sorry to hear this.  Would you be willing to share some additional details about why you were labeled as "non-compliant"? In my opinion, that word gets thrown around a lot for some not-so-valid reasons.  If we could find out a little more about the situation, we can brainstorm some ideas on how to overcome this.

Also, what kind of insurance do you have?  Can you look at transplant centers outside of Oregon?

[jeannea]

The problem is overcoming the specific reasons you were labeled non-compliant. If you know they have real concerns from your past behavior, maybe you should work on that behavior for 6 months and then go back to them to show them you can change. If it's a stupid made-up reason, then you should appeal right away.

I know it's hard to change bad habits but you can do it if you really want to. I think you should take a week and just think about things carefully. You don't want to react in anger or you could have even worse trouble with them. Fair or not, they have a lot of power. Good luck!

[coravh]

I absolutely despise the term "non-compliant". As a (former) diabetic I personally think it is incredibly over used against people who often simply do the best they can and don't always get the expected results. But as the others have said, could you give us a few more details. If you have actually acted in a way that makes them think you won't honor the gift you receive, then you will have to work to modify this behavior and prove yourself. If they are being unfair, then I would not waste a moment and appeal the decision. Best of luck.

[VintageVera]

Thank you for taking the time to reply and I will reply to each individual. First of all, allow me to say that I am traumatized by all this and am going to have to work at not sounding like a victim, which I hate. cattlekid: I was first put on a 4-month hold by OHSU for the following reasons: 1) missed dialysis sessions (I missed 2 in 2 weeks) 2) "self-medicating (I absolutely couldn't tolerate Sensipar and took myself off it due to explosive diarrhea), 3) my potassium was high (the result of the missed sessions) and 4) OK, I forget this one. I worked VERY HARD those 4 months I was on hold and only missed 1 session (OK, two but I made one up), 2) No more medication issues AND started paying office visits to my nephrologist. 3) Potassium came down naturally AND due to my working hard again on diet. In my defense regarding first issue, both my elderly dogs passed away, my best friend died and I was threatened with eviction by my apartment manager. In their defense, if I shut down when under extreme stress how can they be sure that I won't do the same thing post-transplant. Regarding insurance, I have Medicare and a supplemental policy and am 100 percent covered. Regarding applying to other places, I have now been rejected twice and don't think I want to risk the third time without trying to appeal the first two.
jeannea: See above for the specific reasons I was labelled non-compliant. In addition, my nephrologist told me I took too long to return completed forms. (They requested 2 week return and I took a month.) This gave them concern that I wouldn't be on top of things such as prescription changes.
corayh: In my opinion, OHSU isn't being fair because they did not take into account my improvements in each of the areas they requested. They also never asked for any input from me but made their decision without that. Another thing that went against me is that my nephrologist refuses to advocate for me (I think it might be a cultural issue). I know that OHSU was expecting input from him and although at our last office meeting he praised me (first time in 3 years) he refused to advocate for me.
Please, everyone who is reading this, no recriminations, I have had enough of those. I'm asking for help.
 

[jeannea]

I understand no recriminations. I have had trouble with depression and not done things I was supposed to before. My suggestion: Who seemed to be the most sympathetic/ helpful person? I would contact that person. Ask what do you need to do to have a chance of being reconsidered? Or ask what is the best way to make the appeal? Just listen and take notes. You sound interested by listening and the less you say the less you can be interpreted as defensive. I believe that you have been doing better but they may need more time to see it. I think you'll have to offer to show them over the next few months how you're doing better. I'm sorry you're in this situation but waiting a few extra months may be what you have to do.

[ToddB0130]

Sorry for your situation (including all of the losses you've suffered recently).  I agree that you need to talk to someone further to get  better clarity on exactly what this 'rejection' means.  Have they provided you with a timeframe as to how long they want to monitor the compliance issues they are concerned about ?  Given you a timeframe for re-applying ?  Odd to me that a nephrologist you've been going to would refuse to advocate for you.   You need to discuss this further with them as well to find out what their expectations are in order for you to get their 'stamp of approval'.   If it won't be imminently forthcoming (i.e.,  they say they want to see six months of steady compliance),  perhaps getting a different nephrologist might help.

Any chance of a living donor ?   Or have they poo-poo'ed that type of transplant as well ??

I'm sure you are frustrated right now,  but the best thing you can do for yourself at this time is 'prove 'em wrong' and show them how seriously you are taking the potential for transplant.  Also adding a therapist or someone similar to your team of health care professionals might also help to demonstrate that you take your prior instances of 'non compliances' as seriously as they do and are working on resolving issues related to your behaviors in stressful situations.  (and a transplant *is* stressful too and there are a lot of follow up issues related to medicines, labs, doctors appointments, etc that you'll have to stay on top of).

BEST OF LUCK TO YOU !!

[Deanne]

I'm sorry. You've been through some awful times!

Is changing nephs an option? What I'm thinking is a fresh start with a different neph/different center where you don't have such a negative history. Then be 100% compliant for at least six months to demonstrate that your past issues are fully handled and won't come up again. After that ask your neph to refer you to the transplant center and try again. I don't have experience with this, so I'm just trying to take a stab in the dark at it.