I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: raina on December 30, 2006, 06:29:10 PM
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I'm... different. Raised untraditionally in a mix between various relatives, foster homes, and the streets I've forged my own set of values from alot of different influences. I was the first in my family to graduate high school and pulled myself off the streets at 18 to start a sucessful buisness before I got sick. Its still runnin' now.. I'm just not managing it anymore.
Before I got sick I smoked pot maybe once a week. Now, out of concern for my lungs, I eat or vaporize. I got a permit from my local state because after getting sick I lost over 100 pounds to nausea and lack of appetite. About three times a week I get so sick I can't keep food down without it. Despite me seeing 2 gastro-???-enologists and trying every nausea pill they have they still see my use of medical marijuana as "recreational" and are insinuating I may not be able to get a transplant because of it.
The transplant team is talking about scheduling me for a psychological exam. Yes, sports fans, I am insane. I'm dancing to a drummer that most can't hear. I am, however, happy and not a danger to myself or anyone else. I don't want to talk to a psychologist or take prozak.
It really gets to me the way they seem to want me to prove that I am worthy of a kidney. I can understand the medical testing to make sure my other organs are in good shape but the rest is none of their buisness. Even if I were using pot recreationally, why would it matter?
The last thing thats ticking me off here, which is really not an issue for me, is they are asking financial questions. Would I be able to come up with $1200 a month for antirejection meds even if I lost my insurence? For me that would be doable thanks to my buisness but I wonder how many were rejected because they said no?
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Damn girlfriend, i can soooo relate to your story (somewhat) :P I really enjoy reading your posts. We should get together and chat sometime, I am sure we have alot in common ;) ;)
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Oh lordy - I have no idea how I would come up with $1200 without insurance. I've got Medicare, and the only way I would lose my insurance is if my hubby lost his job and couldn't work at all - so I suppose I'd qualify for Medicaid then, wouldn't I?
Hey, my first transplant appointment is in February. I don't suppose you would list some of the other questions they asked you? I'm really curious about what I'm in for during this 5 hour long "appointment".
You realize, of course, that if you quit the pot, you'll lose so much weight that they will drop you off the list for being malnourished, right? :banghead;
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:welcomesign;
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You realize, of course, that if you quit the pot, you'll lose so much weight that they will drop you off the list for being malnourished, right? :banghead;
Or, she can gain alot of weight and still be off the list for being overweight, geeze, almost a no win situation
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Shoot me, just shoot me!
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If you haven't been prescreened this is what I had when I went to the transplant center:
Fill out papers
See one doctor, social worker, a nephrologist, psychiatrists, have an IV inserted. The fun part was the
stress test!!!!!!!!!!!!!!!!!!!!!!!!!! As far as the psychiatrists say as little as you need to but make them think
that you REALLY are interested in the transplant.
Good luck!
SCYankee
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Hope things go your way. Paper work uuuuugggghhh..
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All these appointments and evaluations are a "normal" part of getting listed. Meeting with a psychologist, social worker, financial co-ordinator, etc. The best advice I got was that they really are there to help me. If a problem comes up, they will help "fix" it --like get all the financial information in order for you, if stress test is a problem, they do more tests to make sure your heart is ok. I was scared when I first met with them. I thought I would fail their tests! I have a great team and they all made me feel comfortable. I am also a private person, and didn't really want to share my life with these strangers. But, as I use to tell my children when they hated a certain teacher, you just have to play their game. They make the rules - I want to live --I will follow their rules, even if I think they are stupid! Keep coming her to vent. Everyone is always willing to help.
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I also had a small problem with the pot. I don't do it anymore, but they were worried that I would start back after having a transplant. They said that smoking pot could make you lose the new kidney, which is why they won't give a potsmoker a kidney transplant. Just thought I'd fill you in on what I was told. :D
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I also had a small problem with the pot. I don't do it anymore, but they were worried that I would start back after having a transplant. They said that smoking pot could make you lose the new kidney, which is why they won't give a potsmoker a kidney transplant. Just thought I'd fill you in on what I was told. :D
Why does pot use make the transplant fail? Do they know that for a fact or is it just some anti-pot thing? What exact effects will it have on the transplanted kidney? Will it interfere with anti rejection meds? I'm going to search on medline for any info I can find
Donna
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I think they just find ANY reason not to list people. I guess there are SO many people waiting that if you smoke pot, or tobacco, or eat too much or want to have a baby with your mother's boyfriend they will find fault and not list you.
Just tell them as little as possible. And smile (if you have good teeth)
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There is a group of molds called aspergillis which is found in decaying vegetation (including marijuana). They generate into a fungus that can cause IPA (invasive pulmonary Aspergillosis). There are documented cases of this lethal infection found in transplant patients that are immunosuppessed. The fungus is transmitted in the smoke of marijuana and settles in the lungs. IPA is potentially lethal, although there have been some successes with aggressive antifungal therapy. This info has aggressively halted my urge to burn one.
I believe this is why the transplant work-up teams want to know your habits.
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that is the best explanation for not smoking I have heard of yet,thankyou for that information.
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There is a group of molds called aspergillis which is found in decaying vegetation (including marijuana). They generate into a fungus that can cause IPA (invasive pulmonary Aspergillosis). There are documented cases of this lethal infection found in transplant patients that are immunosuppessed. The fungus is transmitted in the smoke of marijuana and settles in the lungs. IPA is potentially lethal, although there have been some successes with aggressive antifungal therapy. This info has aggressively halted my urge to burn one.
I believe this is why the transplant work-up teams want to know your habits.
Thanks for the information. I tried pot once when I was 18 and nothing happened. I didn't get buzzed or high, nothing at all. I have a relative who smoked a lot of pot and was in a daze half the time and I never wanted to be like him.
HE was my Anti-Drug. :rofl;
Donna
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i smoked some pot a few years ago bu I cannot do it anymore because they threaten you saying u wont get a kidney if you do, plus I have asthma so ya i cant smoke a lot
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because they threaten you saying u wont get a kidney if you do,
Good. I don't think anyone who uses recreational drugs should get a transplant.
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I agree Angela, yes I made a decision to try it, but I want this transplant so I wont do anything that stupid to ruin it.
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:grouphug;
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If they are going to turn away pot users, perhaps they should also turn away users of alcohol aned nicotine? As a social and recreational drinker myself, this would put me off the list! :(
I'm not necessarily a supporter of pot - I'm not particularly against it either. More than 10 years ago I was a pot smoker, quite a regular one at that. But I do not have any issue with people who use it recreationally - I am not denying that it can be a problem for some users, but so can alcohol. And nicotine is by far more addictive, imo.
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If they are going to turn away pot users, perhaps they should also turn away users of alcohol aned nicotine? As a social and recreational drinker myself, this would put me off the list! :(
I'm not necessarily a supporter of pot - I'm not particularly against it either. More than 10 years ago I was a pot smoker, quite a regular one at that. But I do not have any issue with people who use it recreationally - I am not denying that it can be a problem for some users, but so can alcohol. And nicotine is by far more addictive, imo.
Marijuana s illegal. Alcohol and nicotine are legal. The rule makes perfect sense to me.
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If they are going to turn away pot users, perhaps they should also turn away users of alcohol aned nicotine? As a social and recreational drinker myself, this would put me off the list! :(
I'm not necessarily a supporter of pot - I'm not particularly against it either. More than 10 years ago I was a pot smoker, quite a regular one at that. But I do not have any issue with people who use it recreationally - I am not denying that it can be a problem for some users, but so can alcohol. And nicotine is by far more addictive, imo.
I knew some veterans that would partake in smoking pot before going in for treatment. They claim it takes the edge off the needle stick. They also told me it helps them relax during treatment.
Insert "Dark Side Of the Moon" here. I haven't tried this myself, but from my observation, it seems to work.
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Marijuana s illegal. Alcohol and nicotine are legal. The rule makes perfect sense to me.
But surely alcohol and nicotine have as much, if not more, ability to affect the potential success of the transplant? I figure the rule should be based on this, first and foremost.
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I'll post this again.... Pre transplant, I don't believe weed has too many risk factors, but post transplant......................
There is a group of molds called aspergillis which is found in decaying vegetation (including marijuana). They generate into a fungus that can cause IPA (invasive pulmonary Aspergillosis). There are documented cases of this lethal infection found in transplant patients that are immunosuppessed. The fungus is transmitted in the smoke of marijuana and settles in the lungs. IPA is potentially lethal, although there have been some successes with aggressive antifungal therapy. This info has aggressively halted my urge to burn one.
I believe this is why the transplant work-up teams want to know your habits
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Yes, I did read that Kelli, and I do consider it a valid argument. I also think similar evidence could no doubt be found in relation to other drugs, including legal ones.
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"I want to state for the record that I never inhaled". Does anyone remember who said that? Was it Clinton. :rofl;
This brings back memories of keg parties in the woods or a field (I hope my Mom's doesn't read this). :cuddle;
Haven't done anything like that in two decades, why all of a sudden do I have the urge as well?
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Marijuana s illegal. Alcohol and nicotine are legal. The rule makes perfect sense to me.
But surely alcohol and nicotine have as much, if not more, ability to affect the potential success of the transplant? I figure the rule should be based on this, first and foremost.
I understand your argument, but there isn't a gray area here. It is black and white, at least at my transplant hospital. If pot is illegal, it makes no sense to transplant someone smoking marijuana, even occasionally.
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well that only holds in the us, there are alot of countries where it is legal to smoke pot- i wonder what the policy of those countries regarding transplants? and as for nicotine- it was my understanding that no smokers would be transplanted- my husband and I quit ciggerettes for that very reason.
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well that only holds in the us, there are alot of countries where it is legal to smoke pot- i wonder what the policy of those countries regarding transplants? and as for nicotine- it was my understanding that no smokers would be transplanted- my husband and I quit ciggerettes for that very reason.
Good point, Glitter. I wonder if it is acceptable in other pot friendly countries.
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If someone abuses their transplant and loses it because of it (ie.. not taking meds, taking things that could harm the transplant and so on..) they should not be allowed to get another one.. in my opinion. Which is why I believe if they are doing things that would potentially harm the transplant before they ever get one, they shouldn't go on the list to receive one in the first place. (I don't think anyone said anything about this, so I'm not saying this in response to anyone, I just thought it fit this discussion.)
There was someone I read who abused their transplant, received another one and did it again.. I don't know if they got a 3rd, but they should of never got a 2nd. I don't recall who this was... I just remember reading or hearing about it long ago.
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If you want to look at it like that, what about someone who makes life choices that shorten the life of the transplant? do they 'deserve' a second one? Is a transplanted person morally bound to let nothing come before their kidneys health? Or are there some choices that are 'better' then others? Just food for thought.
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Depends. What life choices are you speaking of?
I said if someone abuses it by doing something they KNOW will most likely ause their transplant to be lost.
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the point is- whos to judge? whats okay to one person may be totally wrong and unacceptable to another.
Maybe they didn't plan well enough to afford the meds for afterwards, thats my biggest worry, what if my husband gets a transplant, and then loses it because of MONEY. (its my nightmare) I know it happens to people, I can't remember who, but someone here had that happen. And maybe someone will say thats a wasted kidney, maybe it will happen again, maybe not, but who is going to be the judge?
Why would anyone intentionally kill their transplant?- I think people just make choices and HOPE for the best, and sometimes the choices they make are their undoing.
as long as they are alive, I think they deserve the chance to live, whatever personal choices they may make. and that might include three transplants
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Your right... each situation would be different... so i'm not sure.. lol.. I think I was just thinking of people who "intentionally" just f*** it up... someone in the situation you just described I would never think did it on purpose, its out of their hands and I am sure they would do everything in their power to try and get those meds... :)
Your right... we did get off topic... hehe.. my bad. :bow;
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Why would anyone intentionally kill their transplant?- I think people just make choices and HOPE for the best, and sometimes the choices they make are their undoing.
as long as they are alive, I think they deserve the chance to live, whatever personal choices they may make. and that might include three transplants
I have no idea why they would intentionally do it.. but people do and have.. so probably will continue too... I guess what I would classify as intention is.. like, choosing not to take the meds anymore, or choosing to put harmful things into your body when you know it would damage your transplant...
Hope that makes sense on what I am trying to say.
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If someone abuses their transplant and loses it because of it (ie.. not taking meds, taking things that could harm the transplant and so on..) they should not be allowed to get another one..
I understand your sentiment, I really do. But the difficulty is in defining "abuse". I still drink, for example. However, I am careful not to dehydrate and I don't drink anywhere near the amount I did before tx. If I lost my tx, would it be possible for the doctors to say for certain, that I did not lose it due to alcohol usage? Should we also ban people who, say, eat a poor diet because they don't like vegetables, which in turn affects their health, which in turn makes them lose their kidney? There's all sorts of problems that could arise.
But I agree that people openly abusing their tx probably deserve to have their head read.
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If someone abuses their transplant and loses it because of it (ie.. not taking meds, taking things that could harm the transplant and so on..) they should not be allowed to get another one..
I understand your sentiment, I really do. But the difficulty is in defining "abuse". I still drink, for example. However, I am careful not to dehydrate and I don't drink anywhere near the amount I did before tx. If I lost my tx, would it be possible for the doctors to say for certain, that I did not lose it due to alcohol usage?
But I agree that people openly abusing their tx probably deserve to have their head read.
It's pretty easy for me to define abuse... someone who INTENTIONALLY does not take their medications... that's not abuse to you? (I'm not speaking of someone who loses coverage and blah blah..)
Someone who becomes a crack head, that's not abuse?
Just examples to show what I mean.
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Fair enough, if someone intentionally doesn't take their medications - though it could be hard to prove they did it intentionally. But if you knew someone was doing this, then yeah, for sure it would piss you off. It would piss me off. But I'm not certain how the medical team are able to be put in that position where they need to make that judgement call.
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Yes, very true... proving it would be something else. Good point.
I know someone went public with their intentional abuse awhile back (like years back) and that's why i brought it up to begin with b/c he was public about it and still had more than one.
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Yeah, I hear what you're saying. Your opinion is certainly valid, I'm not bagging you out or anything.
Whilst I continue to drink, I try to be very good to my transplant. I'm pretty careful with staying hydrated, and trying to ensure my medications are taken on time (sometimes I might be an hour late or whatever!). It's too precious to lose. And after my dad has been through donating it to me, how could I wreck it?
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I am an hour or two late sometimes too... circumstances come up, life happens... :)
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I'm going to go a littlle of topic too. I know someone that didn't drink for years after a liver transplant and slowly started drinking. Wonder if they would let him get another if it failed?
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What kind of drinking are we talking - in moderation, or to excess? Was he advised that he can drink in moderation? I wonder, too, if they would let him get another? Are multiple liver transplants common?
The literature I was given said that transplant patients (for any organ, I think) were allowed to drink in moderation - e.g. about two standard drinks per day for women, with at least two alcohol free days per week, as a guide.
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I think a few, not excessive. I met a 28 year old girl on her third liver yesterday. She was so nice. I didn't ask what happened that she needed to have that many transplants.
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Wow. Brave girl.
It just seems that waiting for a liver donor could possibly take longer than waiting for a kidney donor, because some of us are lucky enough to have live kidney donors, which obviously cannot happen with livers.
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Cycobully, I think there are live donors with liver transplants and the donor gives part of their liver.
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Cycobully, I think there are live donors with liver transplants and the donor gives part of their liver.
Very true. a living donor can donate a lobe (portion) of liver. The liver is a large organ that unlike other organs regenerates itself when part of it is taken. The liver of a living donor grows to its original size a few weeks after part of it is taken.
Being such a large organ both living donation and transplant are long and complicated surgeries. A living kidney donation is much simpler and safer for the donor than is living donation of a partial liver.
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Oh, I see. I wasn't aware of that. I mean, I was aware that the liver regenerates, but wasn't aware of live donation.