I’d like to inteject into Boyo’s quote between talking to his doctor and waiting for his testing and parameters to be set and then if you wish getting yourself tested. Work on your own goal for YOU so you won’t be in his position in the future
One of my favorite formerly diabetic patients (who does take good care of herself, always has) got a kidney and pancreas cadaver transplant. They were both quite successful. The immunosupressants led to an aggressive colon cancer…
You’re sounding like a strong person. Indeed, do what’s right for YOU.
I know that during blood drives, there is a place on the form where you can indicate that although you are participating in the drive, you don’t want your blood to be donated. I think it’s a way of making people with AIDS or other such diseases not feel that they are being outed by refusing to participate in blood drives.
There may be such a thing for transplant recipients. It might be worth a phone call.
Oh, there already is - the prospective donor has to undergo various tests and counseling, in part to make sure there is no coercion. If the donor is being pressured the docs can (and at times have done so) simply say that there was some physical anomaly that makes the donor unsuitable.
The organ transplant teams are conversant with the psychological as well as the physical issues, it’s one reason cadaver organs are still a popular choice. There are folks, including medical types, who have issues with live donors because of the risks involved and the lack of physical benefit to the donor.
Well, even if you were all set to go through the testing, if he’s in stage 5 failure he’d be dead before the surgery, if he didn’t go on dialysis at least temporarily. So clearly he has no sense of the reality of the situation.
I came into the thread thinking (just from the subject line) that hey, what a noble thing to consider doing.
But if he’s refusing to do what is needed to take care of himself NOW, that’s a good sign that he won’t do what’s needed to take care of himself AFTERWARD.
My father-in-law is 78. Grossly obese since I met him 36 years ago, diagnosed as Type 2 diabetic 12+ years ago, does NOT eat properly, is in stage 3 renal failure (and didn’t know the term “diabetic nephropathy”, just said he was being treated for some kind of “kidney inflammation”), and if his kidneys went blooey on him and he asked my husband to consider donating I’d be FURIOUS.
Oooh - and if you’re being strong-armed, “Dayum, dad, they say I’ve got Hep C” (or whatever Old Movies Disease is convenient). “I’m lucky that it’s almost completely in remission and the docs say that I don’t require treatment right now, and I should be good for another 40 years even if I do need treatment”.
Short of breaking into your doctor’s office, how will they know any different?
I have on my driver’s license a sticky in addition to the organ donor status that says “use what you can and burn the rest”
Back in the adrenalin junkie days (read level 3 trauma ICU nurse) there was a kid to whom I was assigned. Chris was in the bed, on a ventilator, being maintained until the kidney transplant team from Pittsburgh could get there. He was (sigh) a 19 yo male who rode a big motorcycle without a helmet, in NH, where I believe it is still legal. Such are indeed commonly called–organ donors. His corneas weren’t an option, due to the head trauma, and in 1975 that was about all that got used. His mother was there by his side. I did the nurse things, and talked to the mom. She said good bye to the boy, and I sat with her for the brief time in the OR. We also sat with the two kidneys in their perfusion box, for a bit, while the team made ready to transport them to Pitt from MCHV in Vermont. Through her tears, and my point here, was that her son was going to live on and help two other living beings. She hoped they would think of him, now and then.
My folks are at Mayo now, first day of testing under their belts. From what Mom gathers via her email to me late tonight, a team meets at the end of the testing (Friday) and they all have to agree on his viability as a recipient. He won’t hear until possibly early next week as to whether he gets on the list.
I am an organ donor on my driver’s license, I guess that’s where my initial thought came from, it’s already something I’m amenable to, even as a cadaver. Of course that’s different than planning on living without an organ for the other half of my life. I’m trying to just let it be and not lose any sleep over it until he’s even a viable recipient. If he’s not, there will be plenty of sleep to lose if he really decides not to do dialysis on top of not being a transplant recipient.
My mom has been a dialysis patient since June 2012. She is 66, overweight, and a diabetic with numerous health issues. Her doctor has not ruled out the possibility of her being eligible for a transplant, but she’s not on a list.
He needs to understand RIGHT NOW that dialysis is not optional: once his kidneys stop working entirely, his only two choices are dialysis (either until or instead of transplant) or death. I am not exaggerating.
That’s where the feeling of strong-arming comes in. He does indeed seem to understand that he will die if he doesn’t do the dialysis, short of a transplant. The conversation went pretty much like, “If I don’t get a kidney from someone, I don’t want to do dialysis. I don’t think that’s any way to live, giving up 5 hours a day, three days a week, I can’t travel. (they have a 2nd house 7 hours away) I’ve heard complete kidney failure can be a fairly quick death.”
Oh, and the kicker, “I don’t want to spend all of my money on this. I’d rather see your mom inherit it.”
To which I didn’t have much to say. I didn’t want to call him an idiot and I couldn’t think of anything else, so there was just a lot of awkward silence. I’m hoping he changes his tune if the transplant possibility gets ruled out, at least for now. I wonder if his attitude will be a factor in the team’s decision on Friday.
I have not yet looked into the absolute/relative availability of various types/formats of dialysis.
(Absolute = yes, it exists, Relative = you can’t afford it, and you insurance won’t cover it (USA! USA! We’re Numbah One!) but my hematologist informs me that in-home units exist.
IIRC, Osama bin Laden also required dialysis - but, then again, he was incredibly wealthy and could live comfortably in a cave in a mountain in Afghanistan - not something most of us could pull off.
It sounds like a person who though he could tough it out and is beginning to realize the enormity of the situation.
Will he straighten up enough?
I said the hell with the diet long enough to drink a real root beer last night. That tasted good - Cream Soda a 7-UP only go so far…
From what I hear, they’ve looked into all the options. The at-home option would be fine for him, though not the overnight. I don’t know why he’s so resistant, I would do it in a heartbeat. But then, I have some medical training so machines, IV ports, and strict procedures aren’t a scary thing to me.
And Broomstick, pretty much “yep” to your replies. He’s not making much sense.
I can understand his fear, though. I’m dreading dialysis. Seriously dreading it. I know it’s what will keep me alive pending finding a new kidney, but I really do not want to do it. I, like your stepfather, thought I would get a transplant before having to start dialysis. I now know that’s not going to happen.
My fears about dialysis: If I do in-home peritoneal dialysis, I can kiss my favorite exercise (swimming) goodbye for the duration. If I do in office hemodialysis, I will have a hard time maintaining my employment, which I NEED. I’ve looked into the night in office hemodialysis - I can’t sleep well away from home. So add the exhaustion from the process to the exhaustion of not sleeping… I hope to ask about in-home hemodialysis, but the company I will be dealing with doesn’t do much of it. I know to you all, these fears are probably silly in comparision to dying, but they’re real to me. If I lose my job, I’ll be homeless and sick. Not an optimal situation.
I don’t consider fears and concerns around dialysis to be trivial or silly - it’s a serious, serious medical procedure on top of a serious illness or dysfunction. I’ve never heard it described as pleasant. That said, if you’re in that situation you need to face it squarely, not run away, hide in denial, and try to pressure those around you into giving up a body part. Sounds like you’re trying to deal with it, the OP’s dad is trying to run away.
I haven’t been updating this thread, so in the meantime a few things happened.
Dad’s bio-daughter stepped up and volunteered a kidney of hers. Went through all the testing and they’re a 3/6 match. Mayo said it’s a go, and the dual surgeries got scheduled for November 12th. I wanted to be there, since two family members were going under the knife, so have flights and hotel booked.
Mayo called Dad today. They have a 100% cadaver match. Dad was second on the list and they were having trouble contacting the #1 on the list, so they called him as part of protocol. That was 2pm. The caller said he would call them back later in the afternoon, and was very excited as this is apparently fairly rare.
The call didn’t come.
I tried to talk them into calling Mayo themselves around 8pm, but Dad didn’t want to. Mom said he’s been feeling crappy all day, and he had actually been sleeping when I called. When he’s cranky like that, Mom just leaves him alone. We chalked it up to just being busy scheduling the stuff for the #1 on the list, on Mayo’s end, and left it at that.
I got home and was chopping potatoes when Dad called at 12:30am. Surgery is scheduled for him at Noon! So they’re leaving the house at 6am for the drive to Minnesota, and he will go straight into surgery. This is nuts.
I’ve got my fingers crossed for your dad. A friend had a kidney transplant several years ago (live donor) and almost immediately started feeling better. He was up and walking the next day, and only in the hospital for a few more after that.
Mayo is good. Very very good. Your dad has a great chance of having this go well.
