Just Wondering How You All Would Have Reacted...

[KarenInWA]

Hello all,

A friend of mine came over for dinner the other night.  While she was here, I turned the TV to Dateline, which had a topic of healthcare.  The last hour of it had a story about a young man who suffered a heart attack, and then was used as an organ donor.  The controversy stemmed from him having a debilitating condition that made him live in a nursing home, and the actual reality that he was not brain dead.  His mother was forced to give permission (or didn't give permission - I was too busy tending dinner and other things while this was on.)  Anyway, my friend, upon learning what the story was about, had the audacity to say, in my living room, right before I served dinner, "That's why I refuse to be an organ donor.  I won't have anyone deciding that someone else's life is worth more than mine!"  I could not believe it.  Granted, I'm not on dialysis yet, but she has heard me talk about my frustrations with what my future is going to be like, and how scared I am.  She even told me once, as an afterthought, about a friend of hers who wants to donate his kidney to someone!  I was totally speechless after she said this remark, and had to bite my tongue so I wouldn't say anything.  Now I wish I had said something.  Saying something like that in my living room, before I serve dinner, IS NOT OKAY!!!  How would you have reacted?  I tried telling her that it isn't normally like that, they usually only do this when it is quite obvious one is brain dead.  Her response?  "I know".  So, being brain dead in a hospital bed attached to machines keeping you alive is worth more than my life, and the lives of many others who are waiting on an impossibly long list???  Am I wrong to feel this way?

Another thing I have going on is, I now have a new insurance co through work.  I guess I must have been tagged as a chronic condition, because now their "Medical Management" dept wants to talk to me, specifically a registered dietitian.  I admit, I am stage 4 and I have a lot of trouble following the kidney diet.  I was blessed w/a high metabolism, and I am afraid if I follow it, I will waste away to nothing and that the diet will kill me before my kidneys actually fail.  I am a healthy weight now, and I prefer to keep it that way.  I saw a dietitian 2 years ago, and basically I walked away feeling like she told me "Eat nothing, but eat 2000 calories a day to maintain your weight."  Okay, I'll get right on that!  I hate feeling that everything I put into my mouth contributes to the eventual demise of my kidneys.  I have always enjoyed eating, and for the most part, I still do.  Now I just worry about it more often.  Grrrrr..

Anyway, thoughts?

KarenInWA

[BASSMAN]

I would have just let it slide off like water off a ducks ass.

She is probably scared to death that you are going to ask her for a kidney.

It's funny how friends and family are like that.  My supervisor at work knows about me ( I am stage IV and going through the transplant evaluation at this time).  He has a diabetic brother (stage IV) and is afraid his mother will ask him to donate a kidney to his brother.  He doesn't want to do it.  I told him not to worry that he could be denied easy enough by telling the transplant team he doesn't want to donate and they will deny him as a donor and he can give his brother and mother a BS reason why he was rejected. It's really sad.  I would do it for my brother in a heart beat.  My only brother is diabetic so he cannot donate to me.

I was stage III when diagnosed.  20 years ago.  I have been stage IV for around 2 years now.  I still eat and drink anything I want.  I have quit smoking and I only drink one beer a week.  I prefer hard liqour now.  I don't have to drink as much volume to get a buzz.  Like taking the express train.

[jbeany]

I watched the start of the show.  I got creeped out when the doc in charge of removing the organs started talking about how the donor was still capable of feeling pain when they started the process, and had to change it.

Your friend needs to realize that it was featured on dateline because it was such an unusual occurrence. Yes, it was horrible, but medical malpractice of that sort is very, very rare.  It makes an attention grabbing story, but it's not likely to be a problem for the vast majority of families considering donation.  There are two categories of donors for cadaver organs.  The vast majority are brain dead, and nothing can be done to bring them back.  Once in a great while, there are some that aren't brain dead.  SOP is to remove life support and let the donor die a natural death before removing the organs.  They aren't supposed to be touched before then.  The doc on the show said he had done three or four hundred organ removals, and this was his first time with a non-brain dead donor.

Karen, you're not wrong to be annoyed, but it's pointless to let it get to you.  Your friend is wrong, but you can't change someone's mind when it's been made up in spite of the facts!

As for the dietitian, well, what can I say?  Nod and smile a lot during the appointment, and eat what you feel is best for you when you get home!

[paris]

I watched the program.  There is a good artcle here about DCD - Declared Cardiac Death.  http://ihatedialysis.com/forum/index.php?topic=17207.0      Unfortunately, the beginning of the tv program was very sensational, but the ending clairfied the whole situation.  I think many, like you friend, now feel justified in saying "that is why I won't be a donor".   Your friend was rude and not thinking before they spoke.  But, their words hurt us. It is personal to us.   They would feel different if it was them who needed an organ.     Take care   

[cariad]

Yes, I saw that program, too, and the most of the one before it about the 17-year-old in LA who died waiting for CIGNA to approve her liver transplant. (I was in LA when this happened, and it was big news.)

The doctor in the DCD case was found innocent of any wrong-doing in a court of law, and the person who turned him in to authorities (some 3 months later) was a shifty sort who kept describing him as having a thick accent. The doctor looked foreign, but had no accent and was born in Wisconsin. It was strongly suggested that this was motivated by pure racism. The mother did seem to give consent - they had a recorded phone call between her and the organ procurement network - but I do think she desperately needed an advocate to take these calls and make sure she understood what would result from her statements.

I think I would have said something to a friend, but I don't know. Now that the moment is passed, try to just let it go. I think you have every right and reason to be upset, but like jbeany said, it doesn't help you or educate her if you let it eat away at you.

Your friend better have an advanced directive, though, that says "keep me hooked up to every machine available until the bitter end" because organ donor or not, she could end up in a very similar situation, with a doctor advising her family that it is time to let her go. The ultimate decision as to what to do with her organs belongs to the family.

[Stoday]

Another thing I have going on is, I now have a new insurance co through work.  I guess I must have been tagged as a chronic condition, because now their "Medical Management" dept wants to talk to me, specifically a registered dietitian.  I admit, I am stage 4 and I have a lot of trouble following the kidney diet.  I was blessed w/a high metabolism, and I am afraid if I follow it, I will waste away to nothing and that the diet will kill me before my kidneys actually fail.  I am a healthy weight now, and I prefer to keep it that way. 

Maybe the Medical Management dept wants to check that you are NOT losing too much weight. I have to watch my weight because I might lose too much. I lost my appetite a couple of years ago and never feel hungry now.

[Hanify]

If I thought for a minute that the hospital people would make a decision based on whether you were a donor I wouldn't go near it either.  Luckily, I know enough about it to know that that isn't even possible here - the people making the decision on your life in ER have no association wiht the ones who organise donors.  So I feel for your friend a bit - could you get some good information to her?  Also agree with whoever said she might be worried sick you are going to ask her for a kidney!  But still, a pretty thoughtless thought really!

[Sunny]

I had a friend who made that comment once directing it at me while at a large dinner party. I was very offended and after mulling it over for months decided this person was NO friend if she couldn't empathize with people like me. I don't hang out with her now , ever. Her comment made me aware of how vain and self centered she really is and I don't want to waste my time hanging out with people like that.
As for the health insurance company wanting to talk to you, they try to make you think they are doing you a favor. They are actually just motivated to make sure they don't have to spend more money on you iin the future. It's all about the $ for Insurance companies.

[galvo]

I would have planted the dinner on her head, but, I'm a horrible person. The longer I live with this cursed disease, the more I realise that I have very few real friends.

[KarenInWA]

Hey all, it's me again.  Just one bit of info - I could never ask this friend to give me her kidney because she would, um, need to lower her BMI before she could even be considered.  But, here's another thing she once said to me.  She has been unemployed for a while, which is scary.  It took 2 months before she started collecting unemployment (yes, they back payed her).  I mentioned an article that I had read about how some people are going underground to "sell" their kidneys for extra money (and yes, this is apparently in the US and other advanced countries.  all done under the table, I'm sure.)  This friend actually said she'd rather prostitute herself before "slicing and dicing".  Wow. Can't save a life, but we sure can charge some money to, um, 

Lordy, lordy...

[RichardMEL]

OK being in another country and all I didn't see the show in question so don't know the exact circumstances, but I don't quite understand the comment that Karen's "friend" seemed to think that asking for an organ donation meant that someone else's life was somehow valued higher than the life of the donor. In every single case I know of treatment teams do EVERYTHING and I mean EVERYTHING they can do to save the life of anyone. The organ donation types only get involved after a patient is declared dead beyond all recovery (and yes, then they have to move fast). As Hanify said the folks in ER have nothing to do with the donation types, so it's not like there could be any kind of I don't know shady stuff going on. Even in non-ER conditions (like someone is in a coma for weeks in a ward and passes away) the treatment team is removed from any kind of donation issue until death has been declared.

Reading between the lines here it sounds like the donor in this case was considered to be in cardiac death, but not perhaps brain dead at that point(and thus could still feel pain?? what the??? weird). I don't know the details but even so I don't understand how someone could think that someone soliciting for an organ donation would be valuing anyone's life ahead of anyone else. Added to the fact that when you ask for organ donation in the case of a cadaveric donation it's not like they even know who or where the organs would go since the matching process isn't started until after consent is given.

I find it a bit bizarre. Would I be offended? No I think I'd let it slide and just realise that this particular person is uninformed, and that's sad - but when you're uninformed AND bigoted in that dept it's very difficult to make someone like that see sense, and would be easier to let it slide unfortunately. Some people have such views it's not worth the stress and heartache to try and get them to see sense.

[Malibu]

Ahhhhh, the unpleasant reality that everyone is entitled to (and indeed has) their own opinion.  Unfortunate as it is because no ones opinion totally and completely agrees with one's own.  The friend is simply uninformed.  Consider this:  I have been telling MM's friends about dialysis and PD (which we are not on but we were going to do) for over a year now.  They should know, because I have explained it to them in detail over and over again how the PD cath works.  One friend last night arrived shortly before the NxStage tx was complete and said:  I thought you were going to do a catheter in your butt so you didn't have to do needles."  In your BUTT??  How in the heck did he get that out of all the times I've told this person where the catheter is....head shake....  Uninformed; unconcerned because it is not their daily life like it is ours; uneducated because they don't care about that just like we would not care about the breeding habits of the yellow bellied dingo found only in 2 square miles of the Congo...even though we just saw a program about it we cannot remember if they breed in January or October.

Let it slide...  It ain't worth it.

[RichardMEL]

Talk about uninformed!!! The Dingo is native to Australia! Nowhere near to the Congo!!! 

(although to be fair, wikipedia claims some are in Thailand??? http://en.wikipedia.org/wiki/Dingo)

[Malibu]

Ha.

[hurlock1]

Well, I watched the whole thing. It started out making the doctor look evil. Then there was a bunch of he said, she said. Then there was a period of the media making a bunch of dramatic statements, etc. THEN  there were  a bunch (or some) people that called the mother, encouraging the her to donate the son's organs. This was presented in a real dramatic way. The mother decided to sue the doctor. Then it was proved that the doctor was in, on some sort of subcontract level and he was totally removed from the pre-process of the whole deal. Then the mother got convinced, retracted the suit. and everybody started feeling sorry for the doctor. It was a real convoluted story and once the facts were straight, everybody got what they wanted. Except the mother. The doctor's reputation was ruined. (or so they say) Basically it was a sensationalism story created by the news media. Dateline usually takes a humdrum story and makes a dramatic roller coaster story out of nothing, pretty much every time. We all love "conspiracy theory" stories. For the most part, health care does the right thing, most of the time. The kids life had been over for years. I'm not saying that they had the right to kill him to harvest his organs, and maybe they jumped the gun a little bit. I'm not sure if I would want to live under the circumstances that the boy was living in. I'm pretty sure his "quality of life" was no quality.
It's kind of like when you're driving down the street and a fire truck with sirens, and lights, etc., comes up behind you, all loud and bright, it gets up next to you and it's really loud. Then, when it passes the noise and lights start to fade and you're wondering, "What the heck!, What happened?, Where's it going?. . ." Then it gets a little more distance and you can't hear it anymore, and then it turns of gets even further away and you can't even see it any more. By that time, you forget all about it.
The friend was just saying what she felt at the time. It's understandable. The fire truck was right next to her. Given different circumstances she probably would have blurted out just the opposite.
jmz

[nycrtst85]

get used to following the diet trust me i didnt for like various months and my potassium was so high my whole body and my chest was cramping i couldnt move i thought i was a gonner.fortunetly i could reach the phone for help.was in the hospital for like four days.follow the diet it's very very important.

[Ladystardust24]

Okay, well.. your first part, it upset me, this is NOT the first time media has shined a ugly light on organ donation. It's NOT the first time people whether in my presence or not have said something similar about organ donation. I will admit, I'm a blunt person, I tend to say what is on my mind. I do not usually have an intent of hurting anyone's feelings. But, when things are dear to my heart. and when this had happened before, I made my point. And I also put in actual facts. So i try to give a realistic point. and point out that what they say on TV a lot of the times, is either "myth" driven, or what makes a good story. A  year ago they had a article about how UNOS lies about how many people actually wait on the list, and then went on to talk and target "unactive" people, as myself... It REALLY hurt me. It's like I was personally being told that I should not be on the list..and all this other things. I did write to both the paper and the writer. Because I wrote, that they had no business writing about things they had no clue about. And using not only unrealistic facts, but.. also putting so many peoples lives on risk, that people will read this article, and have even more unrealistic reason not to donate. Which we already all know would hurt us." anyways. personally, even though I would have tried, I would have said something on the lines of "well as much as I believe in everyone having their own opinions, I think it is very rude for you to say something like this knowing my own condition.. Especially as a guest in my home. What you said was very hurtful to me because as a friend, I thought you understood my medical issues and understood how vital a transplant is to me. And if you would like, I can explain organ donation better to you, and give you more information if you like." But what happen, happened, so you cannot change it. But you can learn from this. also, I find maybe waiting a little and then saying something. Because not saying something at all, might make it seem ok for this friend to think it's alright to say it again. So you might want to let her know that what she had said hurt you. Also, if you had said something right then,and there you could have let your anger get the best of you, and said something you'd regret. Maybe you can also suggest that if she would like it, then you could bring her information about organ donation so she knows what is true, since media tends to not always be as truthful as we hope. Because honestly, some people, its not that they don't care.. sometimes, they just really do forget, I have done it, and so has everyone else, we have all had moments when we realize "oh crap, that could have been hurtful!"
So I feel like this might be the case, maybe she didn't actually try to hurt your feelings, it was just ignorance in her part. So trying to point out that it did hurt your feelings, and if she would be open to it, you could try to show her some things that is true about organ donation. So yea haha.

honestly, I won't sit here and say "Oh i never overdrink! and I follow everything to the T.." no, I am no saint. (...probably far from it... lol) But all I can do is my very best, and thats it. I eat in portion sized, I think its ok with binders to eat one slice of pizza, not the whole thing. Plus I try to be good due to the fact I'm not really fond of our dietician. So yeah. haha. But i wish you all the luck!

[KarenInWA]

Thank you, everyone, for your input!  As for me following my diet, I am lucky right now where I don't experience any side effects of anysort.  My potassium and phosphorus have always been in the normal range, with the sometimes exception of my K being on the very high end of normal.  My 2nd opinion neph even told me I don't have to follow the diet to the letter, just as long as I don't go crazy with portion sizes.  I just know that if I were to seriously limit myself to 3 oz of meat a day, and everything else that dietician suggested, I would probably be malnourished and and checked into the hotel that has death's bed right now.  I'm only 36.  I don't need to do that to myself. 

My BP is usually in the normal range, as well. Hopefully, it stays that way.

KarenInWA