Fresh Meat

[MooseMom]

I agree with Karen re the fake leg analogy.  If we could bioengineer "fake" kidneys that worked as well to cleanse blood as a fake leg works in enabling amputees to walk, we wouldn't be having this discussion.  Solid organs suitable for transplantation are just not plentiful enough.

I can't help but feel that there is something wrong with this picture.  While it is true that some tx centers are more demanding and/or conservative than others in choosing their potential tx recipients, I just don't buy this notion that any center would compel a patient to endure dialysis as some sort of test.  I suspect that this doctor of yours is not being totally honest with you.  Have you thought about asking him just what it is about you/your case that would make him tell you that Emory requires you to "commit" to dialysis before you'd be considered for tx?  Have they already labeled you "non-compliant" for a particular reason?  If so, could your doctor tell you exactly what is expected of you NOW in order to be listed LATER?

[angroid]

I do have to say, I question any dr who says that "one" patient stopped taking their meds and died as a result. First of all, if this is a kidney transplant patient, death is more common as a *result* of taking the meds, because they suppress the immune system and open up the possibility of nasty infections and/or cancer - both can cause death, especially if ignored. Secondly, if a KIDNEY transplant patient stops taking their meds, then the worst that can happen is they end up on dialysis. Now granted, if this same patient ignored kidney rejection/failure like they may ignore an infection or cancer, then yes, maybe death would be imminent then. With any other organ transplant, yes, death would be the end result of organ rejection as a result of not taking meds.

As for compliance, your analogy to a broken leg is like comparing apples to oranges regarding compliancy. Reality is - kidneys from deceased donors are a rare commodity, and kidneys from live donors are precious as well. It is not fair to any living donor if you choose to not be compliant with your meds or treatment, and it is not fair to the others on the list who could have gotten your deceased donor kidney if you do the same with that. That is why transplant centers are so anal with compliancy - they NEED to be. In your leg analogy, you are repairing your OWN leg, not getting one from a donor - alive or deceased. The only one who suffers in that equation is you. With a living donor, there is risk to them under going medically unnecessary surgery - and that risk may not show until years later.

KarenInWA

I really hate having to qualify everything I say. I was asked a question and gave my response, you can question it as you wish. We are talking here in this case about a conversation I had with one of my nephrologists, which I dutifully quoted from memory to the best of my ability. If you will recall, this was
concerning a kidney transplant recipient who felt so good he quit taking those anti-rejection and other pills. As far as death coming because of these pills, I can't say.

Sorry you don't like the analogy, even though both apples and oranges are still both fruits. My point is only this: if I or you or anyone else has a willing donor, it's not the place of the physician or transplant team to hold up the process because of what is a "possibility". Any doctor by Hippocratic oath doesn't treat you "on condition" or with asterisks attached. It's hard enough for some of us to make that decision to even accept one, let alone have to also accept insinuations of non-appreciation for something the magnitude of a donated kidney. AS IF they (or perhaps you here) want to pretend they care more about and for, say MY loved one, than I do.

Presumptuous, preposterous, and really, pathetic.

angroid

[angroid]

Yeah looks like I probably won't be hanging here long. Please learn to read, or if you just want to argue, pick a real issue.

I agree with Karen re the fake leg analogy.  If we could bioengineer "fake" kidneys that worked as well to cleanse blood as a fake leg works in enabling amputees to walk, we wouldn't be having this discussion.  Solid organs suitable for transplantation are just not plentiful enough.

I'm sorry did I compare a leg to a kidney? LOL, I (the analogy) was just comparing another operation, or procedure. I don't know about your bionic kidney and all that.

I can't help but feel that there is something wrong with this picture... just don't buy this notion than any center would compel a patient to endure dialysis as some sort of test.  I suspect that this doctor of yours is not being totally honest with you.  Have you thought about asking him what just what it is about you/your case that would make him tell you that Emory requires you to "commit" to dialysis before you'd be considered for tx?  Have they already labeled you "non-compliant" for a particular reason?  If so, could your doctor tell you exactly what is expected of you NOW in order to be listed LATER?

Your first mistake is to feel when you should be thinking. I never said anything about a test, that's your input, just like Karen you guys are twisting what I said, why really? Read again please what I actually wrote, not what your imagination converted it to.
1. My doctor is perfectly honest with me.
2. There's nothing unusual about my case and I am a perfect candidate (I am told) for a transplant. I still need to do the formal testing procedures. But I really wasn't talking about me per se either.
3. As I said, whether it is routine, or normal, or just protocol, I don't know. Why skip all the important things?
4. ME? Non-compliant? Now what would give you that idea?

angroid

[MooseMom]

Angroid, you are right that it sometimes can be really aggravating to be constantly lectured by all and sundry about how appreciative you must be for a donated organ, as if it hadn't occurred to you to be grateful!    I remember being "encouraged" to attend a talk led by a woman who was the head of the center's department that dealt with recipients contacting donor families, and I remember she went on about how to write a letter and how important it was to show gratitude to the donor family.  I felt rather insulted, actually, especially since I had dragged myself out of my post-tx bed to attend.  It was just really odd, especially since the center's transplant "handbook" addressed this issue.

You've mentioned living donors several times now; do you have a living donor lined up but are facing resistance from Emory?  Or do your comments/criticisms apply to cadaveric donors/organs also?

Anyway, good luck to you!

[MooseMom]

Angroid, you're new to IHD and we are just trying to get to know you.  It looks like I've made the error in thinking that your posts were reflective of problems/questions about your particular case while it seems that you were asking more general questions and making more general comments.  I apologize for my misunderstanding of the situation.  I think we all know you much better now, so maybe there will be fewer misunderstandings in the future.

I also apologize for having the audacity to "feel".  I will not do so again.

If you'd like to comment further on your particular set of circumstances and how you are personally getting on with your transplant prospects, I'd be very interested in those posts!

[kickingandscreaming]

I was so surprised that nephrologists did not seem interested in the cause of my CKD.

I even specifically asked last visit.  I have well-controlled diabetes and high blood pressure.  So the cause could be either or neither. I asked her what she thought was the cause.  And she responded "I don't know and it doesn't matter."   I can understand that to an extent.  Kidney failure is kidney failure.  And they have a very limited number of arrows in their quiver (and as you so correctly stated, the state of the art is pretty much stuck over the last 50 years with only minor tweaks).  On the other hand since there are so many causes of CKD, you'd think knowing or exploring the source might make a difference in the approach. But what do I know? I'm only the patient.

[Darthvadar]

  to IHD....

Nice to see someone who's not willing to be walked on by the 'powers that be'... It's a great story, and I'm looking forward to reading the updates!...

Darth... Moderator....