I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Rerun on June 22, 2006, 07:52:55 PM
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Do not say "I've got $50,000 if you move me to the top of the list".
Do not say "I won't need anti-rejection drugs because I'm a positive thinker."
Do not mention that you might be moving to another state after you get listed!
Do not tell your transplant surgeon he looks too old to be doing this kind of surgery!
Feel free to add to this.
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Do not say "Well I've been known to forget to take my phosphorus meds"
Do not say "Sucks to be those Kaiser patients in the news recently, huh?"
Do not say "Will the anti-rejection meds cause an interaction with my chronic" (Marijuana)
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Do not go on and on about your 7 cats that just LOVE to sleep with you!
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Do not tell your doctor he looks like a younger version of Doogie Howser, even if he does.
Do not let them know your insurance lapsed in the last six months. Uh oh!
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Whatever you do, do not stand up and go screaming out of the room when they ask you the same questions 25 times. Always answer calmly.
If they ask if you have a support system set up say yes, even in your family lives in Egypt and you are in the U.S.
Never, ever let them see you sweat!
Do not tell them about your trials and tribulations in your life.
Try not to tell them too loudly you HATE dialysis and will do anything to get a kidney.
Katherine
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Whatever you do, do not stand up and go screaming out of the room when they ask you the same questions 25 times. Always answer calmly.
If they ask if you have a support system set up say yes, even in your family lives in Egypt and you are in the U.S.
Never, ever let them see you sweat!
Do not tell them about your trials and tribulations in your life.
Try not to tell them too loudly you HATE dialysis and will do anything to get a kidney.
Katherine
;D So True!!!
Fixed quote error - Epoman ::) ::)
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Don't let the team know about the one ice cold beer you had three years ago at a summer barbecue--you'll be seen as having "alcohol issues". Friend of mine went for an evaluation and he was completely honest telling them he smoked weed twice as a teenager and had a beer once a year on his birthday.
They gave him a really hard tme about it. But do you tell them everything? Is it really nececessary to be that truthful. When I had mine I told them the truth, I drank as a younger person, tried weed once (didn't like it--I hate smoking). It was never an issue for me.
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Don't let the team know about the one ice cold beer you had three years ago at a summer barbecue--you'll be seen as having "alcohol issues". Friend of mine went for an evaluation and he was completely honest telling them he smoked weed twice as a teenager and had a beer once a year on his birthday.
They gave him a really hard tme about it. But do you tell them everything? Is it really nececessary to be that truthful. When I had mine I told them the truth, I drank as a younger person, tried weed once (didn't like it--I hate smoking). It was never an issue for me.
I was really honest before too but I was only 16 and didn't have anything to hide :P :D
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Do I ask them at the transplant evaluation if I go without steroids? Or is this a bad idea?
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Do I ask them at the transplant evaluation if I go without steroids? Or is this a bad idea?
Drug protocol is set by the transplant center. Even before evaluation your doc should be able to tell you what protocols are used at what transplant centers.
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What Transplant Evaluation :-\
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I am going to Loma Linda for transplant evaluation soon. Kaiser okayed me to go!
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The social worker at my eval asked me about drug use. I told him I smoked pot twice in high school (20 plus years ago). He called me a user. :D
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I will be going to UCSF for my eval in 20 more days. But my doctor told me I do not quailify for a transplant because I had a heart attack well 3 of them this year! Has anybody heard what the quailifing factors are?
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I do not know what all the qualifying factors, but I do know you should be healthy enough to survive the surgery. They might feel your heart won't take well to all the drugs they put you on during the procedure.
Never tell your doctor you'd rather sit in front of the TV with your 3 cats while eating buttered popcorn and milk then go for a jog with your 4 dogs.
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As for asking about the steroids, OSU is now doing transplants without steroids-----YEAH :clap;
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As for asking about the steroids, OSU is now doing transplants without steroids-----YEAH :clap;
Oh why are we so behind!!! >:(
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Oh why are we so behind!!! >:(
Still not alot of centers are doing this. Even then those that do use it do not let all patients on that protocol. Only those that have low antibodies.
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Just had this discussion with my transplant surgeon last week. UNC does a four day protocol, but only with low antibodies. In my case, if I do get a transplant, he says the steroids would be more like a year. The anitbodies rule everything!
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Do not say "Yes... my living donor is .... uh... my cousin! That's it... cousin Farhan Noor Udeen!"
Do not say "Pills? Yeah, I guess I am a little flaky sometimes when it comes to taking pills."
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Do not say "Yes... my living donor is .... uh... my cousin! That's it... cousin Farhan Noor Udeen!"
Do not say "Pills? Yeah, I guess I am a little flaky sometimes when it comes to taking pills."
:clap; Pretty Good!!
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Don't say- "not only am I on board with this transplant thing, ALL my personalities are on board!"
Don't say- "Of course I want a transplant, do you know what this low phosporous diet has done to my beer binges?" :beer1;
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If you are an IV drug user just tell them the marks are from dialysis. They won't know......
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I would not go in singing "100 Bottles of Beer on the Wall".
Don't tell them "Tequila Make my Clothes Fall off" either.
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Don't tell them you'd rather BUY a frick'en kidney if it were legal!
:beer1;
Do not ask the Transplant Coordinator what blood type she is.
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I would not ask everyone in the waiting room what blood type they were either.
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I'm going to the Transplant "Support" Group tonight! The topic is "The Pre-Renal Evaluation Process". The speaker is the biotch that told me it wasn't fiesable to work me up for a transplant because I would be moving........
How does Kitkats put it? MULllllllllhhahahahah >:D
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*express mailing crate of rotten tomatoes to rerun*
>:D
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Do NOT say, "I have cash, in small unmarked bills. Who do I pay??"
::)
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Do not bring a small unmarked kid with you and mark his right kidney for the taking.
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Do not say , I will be taking a bus to the Hospital when they call me ....
Or I will be flying Jet Blue to the hospital .
Or , I don't have a phone for them to call me ,. but my PO Box number is ....
Katonsdad
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Do not mention two words: medicinal marijuana :secret;
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Probably wouldn't be good to mention my keg of margaritas and the hose???
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Do not say "Sucks to be those Kaiser patients in the news recently, huh?"
Uh oh, I'm a Kaiser patient and I never heard anything about Kaiser patients having transplant troubles. Please 'splain cuz I just got approved to go to the UCLA transplant center.
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Do not say "Sucks to be those Kaiser patients in the news recently, huh?"
Uh oh, I'm a Kaiser patient and I never heard anything about Kaiser patients having transplant troubles. Please 'splain cuz I just got approved to go to the UCLA transplant center.
It was in the news last year, here's one link, http://ihatedialysis.com/forum/index.php?topic=3449.0 but there is more in the news section. UCLA is not affected, but I personally suggest also listing outside of Los Angeles (San Diego area has a shorter wait time) as a multiple listed patient.
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Do not tell them that your imaginary friend has offered to be tested! I love my imaginary friend. :cuddle;
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Yeah, to the above. Also make sure they know you have a support system in place and it is NOT the imaginary friend.
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I've got nothing funny to say! :( :urcrazy;
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Do not tell them that you make a practice of running in traffic and you like to bungeee jump off
small bridges and you like to be the first one to ride a carnival ride before its inspected and
do not tell them you dream of the day you can eat steak tatar and real cesar salad . Do not
tell them you like to pick bar fights at biker bars and definetly do not tell them you love to sing
Barry Manilow songs at Kareoke night.
"at the copa the copa cabana :bandance;
Katonsdad
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Do not say "I don't want another p*cking kidney". Are you crazy? Why would I want to go through losing it again! All the damn drugs and such. Hellll no I don't want one.
(That is how I feel, but I still want on the List) :waving;
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Do not tell them that your dream career is to be an infectious diseases doc
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Do not tell them you can't wait to get your new kidney so that you can move forward with your dream of being a World Champion Kick Boxer!! :boxing;
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Do not tell them your dream of being the World Wrestling Federation Champion of cage wrestling!
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Don't tell them you like to go to a beer drinking championship in Germany and participate heavily like in Beerfest :rofl;
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guess I shouldn't tell them I go to the mountains for my "recipie".......NxS trainer today said many patients in GA got kidney failure from the lead in the "recipie" they used. :puke;
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I would not tell the coordinator you plan on skydiving regularly after your transplant.
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Do not tell them if you have a pending lawsuit against your last surgeon.
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Do not tell them if you have a pending lawsuit against your last surgeon.
:rofl; :rofl; :rofl; :clap;
Do not tell them .......................I got nothing! :banghead; :banghead;
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Do NOT tell them you take herbal cures instaed of conventional medications.
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Do not tell them that they have to schedule your transplant around your busy schedule.
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Do NOT tell them you think anti-rejection meds are over rated.
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I've never had a problem from Drs about drinking, or smoking cannabis. In hospital in England they give you a questionnaire that asks about recreational drug use - just for treatment (but not to stop treatment - clashing with other drugs etc), but there's never been any frowning or head shaking. Is the US really so condemnatory about stuff like that? As Mark E Smith of The Fall says, everyone knows that Doctors are worse than anyone else when it comes to drinking and drug taking. :beer1;
On my Pottasium do eat/don't eat list it says no to beer and wine, but yes to Whisky and other spirits. I follow this advice religiously.
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ohhhh I would follow that advice toooo..... :yahoo;
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:bump;
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Tomorrow I go to see my transplant doctor.
I'll make sure I don't tell him I'm fed up with waiting for his ass to decide when I'm "sick enough" to get my sister's kidney (she is an 11/11 identical match). I'll have to find a very polite way of saying," What the hell am I waiting for? She offered, she matches, let's just get on with it then! That way she and I can both get on with our lives."
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Don't tell them about any of those 'close calls' with alcohol poisoning.
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Tomorrow I go to see my transplant doctor.
I'll make sure I don't tell him I'm fed up with waiting for his ass to decide when I'm "sick enough" to get my sister's kidney (she is an 11/11 identical match). I'll have to find a very polite way of saying," What the hell am I waiting for? She offered, she matches, let's just get on with it then! That way she and I can both get on with our lives."
11/11 match? I've never heard of that. Congratulations!
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Probably not a good idea to pull out a gun and say "I am not leaving without a kidney".
:blank:
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Do not mention your past life as a call girl/escort. :shy;
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"Will it make me look fat?"
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"I'll be in the bar while waiting for my lab results." :beer1;
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"I'll be in the bar while waiting for my lab results." :beer1;
:rofl;
Classic!
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:bump; ;D
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"I'll be in the bar while waiting for my lab results." :beer1;
Hmmm, that does seem like something to do :rofl; :rofl;
There are a few around by the hospital.
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Don't tell them that your new aged healer/psychic confirmed your vision that no anti rejection drugs were necessary!
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Do not mention your past life as a call girl/escort. :shy;
Seriously, that should not make any difference, to anything.
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:bump;
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Don't tell them about the celebratory slice of cheese pizza right after surgery.
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Who do I make the check out to?
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Who do I make the check out to?
Wait that could be a good thing to say :rofl; :rofl;
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Will the antirejection drugs interact with my recreational drug use?
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Thank you, thank you, thank you all for your sarcasm . It really hit the spot for me. Sorry I have nothing funny to add :bow;. After waiting for my transplant for the last 4 years this thread really hit the spot.
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Really what do i say and what can i expect? i have my appointment on 12th and i am so afraid of them saying no. so what testing do they do i don't use drugs don't drink don't smoke what all do they do? i am told there will be a surgeon a transplant nurse a social worker and a financial ad visor is this true? please let me know what to expect thanks Vanessa
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vanessa, have you tried the advanced search option? Click on the Advanced link, use only the word "evaluation" and search only in the Dialysis: Transplant Stories section and you can find dozens of discussions people have posted describing their own evaluations and asking questions about what to expect.
As for what to expect - a lot information thrown at you in a hurry, a lot of questions about your finances and your family support system, and a lot of time spent waiting around. Bring a book!
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Leave the hooker three inch heels at home.
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:rofl;
Leave the hooker three inch heels at home.
Or........
Wait for it...Wait For It.
Leave the Hooker at home :rofl;
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Will the antirejection drugs interact with my recreational drug use?
Or will they enhance them?
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Let's get this over with! I don't even LIKE peeing!! :sir ken;
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Wait. What do you mean I will start peeing regularly? I kinda like not having to stop for bathroom breaks. :o
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Let's get this over with! I don't even LIKE peeing!! :sir ken;
I do sometimes think that, usually at the time I can't get the door open fast enough, or while traveling. :bandance;
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............. Saying that you want to go on Nocturnal Using NxStage at a Davita Clinic............
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??? I don't get the joke as something not to say to the transplant center. I don't think that would raise an eyebrow.
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Will the antirejection drugs interact with my recreational drug use?
This should not make any difference (it might; but it should not). You would be asking a serious question. I don't think anyone these days (with any sense) thinks that just because a drug is illegal it is therefore dangerous. Asking about interaction with antirejection drugs is just good sense. You should do it with any drug: anti-histamine, paracetamol, etc. If some illegal drugs are bad to take with antirejection drugs, you'll want to know which ones they are, and which ones are ok.
In England, the hospitals give you a form on admission asking you to list recreational drugs you take; I imagine this is the kind of thing it is for: not so they can not treat you, or call the police.
The peeing stuff: I've just about stopped now, and I miss it. There was nothing like a good lash; and I look forward to doing it again.
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Will the antirejection drugs interact with my recreational drug use?
This should not make any difference (it might; but it should not). You would be asking a serious question. I don't think anyone these days (with any sense) thinks that just because a drug is illegal it is therefore dangerous. Asking about interaction with antirejection drugs is just good sense. You should do it with any drug: anti-histamine, paracetamol, etc. If some illegal drugs are bad to take with antirejection drugs, you'll want to know which ones they are, and which ones are ok.
In England, the hospitals give you a form on admission asking you to list recreational drugs you take; I imagine this is the kind of thing it is for: not so they can not treat you, or call the police.
In the US, "recreational" = "illegal" when talking about drugs. Anti-histamines & the like are referred to as OTC (over-the-counter), not recreational.
I considered asking them to help me write an appropriate ads for craigslist, but thought better of it. Something like:
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BFF needed to provide post-surgical care for kidney transplant recipient. BFF must attend all medical appointments and appear interested and aware without really giving a hoot. I will provide you with a list of questions you may be asked at these appointments and the correct responses to these questions. Examples:
Q: How long have you known Deanne?
A: We grew up together. I'd do anything for her.
Q: If Deanne called you in the middle of the night to go to the hospital, how long would it take you to get to her house?
A: Approximately 5 seconds. I'll be sitting on a chair outside her bedroom door all night, just in case she needs me.
You must not, under any circumstances reveal how much I am paying you for this service.
--------
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LOL @ Deanne. I dare you to do that! That would be brilliant!
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Will the antirejection drugs interact with my recreational drug use?
This should not make any difference (it might; but it should not). You would be asking a serious question. I don't think anyone these days (with any sense) thinks that just because a drug is illegal it is therefore dangerous. Asking about interaction with antirejection drugs is just good sense. You should do it with any drug: anti-histamine, paracetamol, etc. If some illegal drugs are bad to take with antirejection drugs, you'll want to know which ones they are, and which ones are ok.
In England, the hospitals give you a form on admission asking you to list recreational drugs you take; I imagine this is the kind of thing it is for: not so they can not treat you, or call the police.
The peeing stuff: I've just about stopped now, and I miss it. There was nothing like a good lash; and I look forward to doing it again.
Good Luck on your transplant journey.
Drug and Alcohol Abuse
The kidneys have several functions, one of which is filtering waste from the blood. Excess alcohol consumption and the abuse of illegal drugs take a toll on the kidneys and can result in additional kidney damage. Patients with a history of drug and alcohol abuse do not make good candidates for kidney transplant. One of the concerns associated with performing on a transplant on a patient with this type of history is that he will relapse after kidney transplant. Continuing to abuse alcohol and drugs will damage the transplanted kidney, resulting in serious complications.
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Many hospitals in the US don't want to hear you are taking illegal drugs while needing a kidney or any other organ. They equate that as you are not going to be taking good care of your kidney since you like smoking, shooting up, snorting, etc substances that are harmful and dangerous to your body.
I don't appreciate you insinuating that I don't have any sense b/c I think illegal drugs are dangerous...I wouldn't give a new liver to someone who was an IV drug user and an alcoholic. What a waste of a precious gift of life. It is one thing to have an occasional drink and quite another if you could be a story on that show Intervention!!!
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I like Deanne's comment, got back on track of the thread of being humorous :2thumbsup; :rofl;
Another answer, BFF is an insomniac, BFF is always up at night at my beckon call sitting on laying on the sofa watching tv or being on the pc.....lol
Sooo, what's the pay grade? :-[ :rofl; :rofl; :rofl; :rofl; :rofl;
I do sleep on the flor or on a couch.
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...or playing video games just like my husband is doing now. How old is he, like, 12? ::)
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"What do you mean, I can't barter for the immunosuppresents?"
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"What do you mean, I can't barter for the immunosuppresents?"
:2thumbsup; :rofl; :rofl; :rofl; :rofl;
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:bump;
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"Can you just shove three or four kidneys in there so I don't have to come back?"
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Love that one Kelly! :2thumbsup; :rofl;
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"Can you just shove three or four kidneys in there so I don't have to come back?"
:rofl;
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I have been reading on here about the issue with illegal drugs and transplant....I hope I dont get any ugly remarks, as I almost died in May as a result of a 20 year battle with drug addiction....I could list all the things that preempted my drug use but won't.. I am still a drug addict.. in recovery... I had been clean a year before a replapse...and wound up in ESRD....I hear all this that I am a poor candidate... I just want to know, is it even realistic for me to hope for a kidney one day? Or should I just come to grips with the fact that it is a lost cause due to my history? I understand all the relapse factors... I just want someone to tell me one way or the other so I am not leaning on false hope..
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It is not the business of anyone, even transplant centers, to sit in judgment of you. What they care about is your future and how your drug use/addiction might affect a new kidney. Kidneys deemed suitable for transplantation are so rare and are so precious, and no transplant center is going to risk a new kidney with someone they feel may not take care of it.
To be honest, I don't think you would be as good a candidate as someone who did not have a history of substance abuse, but that does not mean it would be impossible. Each transplant center has its own rules, and one center may rule you out immediately while another may have you interview with a social worker who could better determine if you have what it takes to be a successful recipient.
The only way you will find out is to ask. Ask more than one tx center.
Another thing to think about is your own survival. I'm sure you know you will have to take all kinds of anti-rejection drugs and antibiotics for the rest of your life, and I would think that those combined with illegal drugs wouldn't just kill your new kidney, but it would very likely kill the rest of you, too. Do you want to take that chance? Is your survival instinct stronger than your addiction?
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Moose Mom, thanks for the input and honesty....and my survival instinct is very strong... addiction is a daily battle though... some days are better than others.. when u learn to rely on chemical susbstances to cover pain for so many years its hard to learn to feel again.. but I have conquered it before.. and I am now.. and I will continue to.....there are just so many unkowns right now... I wish I could look into the future and have SOME idea as to how long I may be off dialysis....at 20% kidney function I have no idea... I was so sick on dialysis... hate the day that I have to return.. but thankful to be alive...
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Regarding how long your kidneys will stay at 20%, a lot depends upon what caused your ESRD in the first place. If it was acute injury due to drug use, then logically you would think that if you cease the drug use, your kidneys will at least not get any worse. I could be wrong about that, but if you have an underlying renal disease like fsgs or if you are diabetic, those things coupled with drug use will almost certainly lead to further deterioration. Again, I'm just guessing about that, so if someone else has better information, please say so!
I myself have fsgs, and I have had it for over 20 years now. I found out my egfr was in the low twenties back in 2004, and then in 2009, it dipped below 20. I have not yet started dialysis, and it could be a few more years before I have to start, or it could be after the New Year...who knows? So I do understand the frustrating uncertainty, but I console myself with the knowledge that I'm not on dialysis TODAY.
What does your neph say? Does s/he anticipate that your function will deteriorate? What are you doing to preserve the function you have?
It is a daily battle for me not to sink into the morass of depression, so I have some appreciation of what it is like to engage in this sort of warfare. It's certainly not as demanding as battling addiction, but I have some small idea of what you must be experiencing. I am very admiring of anyone who is fighting addiction of any sort, so my hat is off to you. :cuddle;
If I were in your position, I think I'd have driven myself crazy with too many "what ifs" and "what nows". I would encourage you to start trying to get some answers for yourself. Start with your nephrologist and try to get some idea of what you might expect in the future. S/he might not be willing to speculate, but you can ask, anyway. Then see if you can get a referral to a transplant center and speak to them. They probably have some sort of protocol they may require you to complete before they agree to start the listing process. My husband's secretary's cousin was/is an alcoholic and destroyed his liver, but he got a liver transplant, so it's not entirely impossible that you may have a chance, too.
I don't know anything about addiction, but I can't help but think that having to return to dialysis would be just about the best weapon anyone could possibly have in their daily battle.
Good luck, and let me know what you plan to do next. :cuddle;
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I have been reading on here about the issue with illegal drugs and transplant....I hope I dont get any ugly remarks, as I almost died in May as a result of a 20 year battle with drug addiction....I could list all the things that preempted my drug use but won't.. I am still a drug addict.. in recovery... I had been clean a year before a replapse...and wound up in ESRD....I hear all this that I am a poor candidate... I just want to know, is it even realistic for me to hope for a kidney one day? Or should I just come to grips with the fact that it is a lost cause due to my history? I understand all the relapse factors... I just want someone to tell me one way or the other so I am not leaning on false hope..
Thought of you when I read this http://ihatedialysis.com/forum/index.php?topic=25242.0
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Moose Mom,, thank u for heart-felt input... As far as what cause my kidney failure... it was septic shock.. a fungus that got into my bloodstream... from a dirty needle,, they believe... I was not expected to make it, and had I been older they think I was have died.. But I am 40 and they said my strenth and age is what pulled me through.. I just asked the neph about future prognosis.. and you are right.. He is not willing to speculate... He does not believe I will regain more than 20% function.. He says this is due to scar tissue building up...I am trying to follow the diet, take my binders, just recently started Procrit.. Hg very low... Goodness knows I need to be exercising or walking or something.. but have not escalated to that yet.. and the "what ifs" are driving me crazy.. trust me... I have tried to find more info on septic shock and kidney failure and prognosis but the info is just not out there. My neph says this is VERY common.. but the internet says it really is not .. if u come across any info, Pls pass it along... again, thank you so much for your input.. I do hope to one day be a good enough candidate for a transplant. .wonder if having a living donor would make any difference..
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OK, I'm going to guess again...I think having a living donor may well make a difference, but again, it may depend upon the tx center.
If I find anything about septic shock and kidney failure, I'll certainly post the link(s).
Keep me updated, OK? How often do you see your neph? How often do you have labs done? Have you seen a noticeable decrease in function over time?
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Hey I'm a newbie, caregiver for my husband on home dialysis. He is going for a transplant consult this week and the hospital said he has to bring someone with him. I have to work and he doesn't want me take another day off!!! He said, what can they do?? Throw me out??? I'll just tell them you're parking the car....
still parking...
she'll be here any minute...
went to get coffee...
in the bathroom...
any experience with this?? What if he goes alone??
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Hey I'm a newbie, caregiver for my husband on home dialysis. He is going for a transplant consult this week and the hospital said he has to bring someone with him. I have to work and he doesn't want me take another day off!!! He said, what can they do?? Throw me out??? I'll just tell them you're parking the car....
still parking...
she'll be here any minute...
went to get coffee...
in the bathroom...
any experience with this?? What if he goes alone??
They want to be sure the patient will have support at home after the surgery, and that's part of the process.
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omg this is good lol
Hey I'm a newbie, caregiver for my husband on home dialysis. He is going for a transplant consult this week and the hospital said he has to bring someone with him. I have to work and he doesn't want me take another day off!!! He said, what can they do?? Throw me out??? I'll just tell them you're parking the car....
still parking...
she'll be here any minute...
went to get coffee...
in the bathroom...
any experience with this?? What if he goes alone??
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Hey I'm a newbie, caregiver for my husband on home dialysis. He is going for a transplant consult this week and the hospital said he has to bring someone with him. I have to work and he doesn't want me take another day off!!! He said, what can they do?? Throw me out???
any experience with this?? What if he goes alone??
Unfortunately, the answer to "Throw me out???" is "Yes, they will throw him out." The first transplant center I talked to wouldn't see me without assurance that I would have a "caregiver" there with me, so a friend met me there. I arrived first and they wouldn't take me in until my friend arrived. I ended up "firing" this center because they said they would refuse to see me at any appointment without a caregiver.
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Not a good idea to tell them you have an "invisible friend".
:shy;
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I am so happy that my current transplant center did not require that a second person be there for the initial evaluation. I don't want anyone wasting their time at the initital appointments....I will need them enough afterwards! As long as you can provide documentation that you have a plan in place, one would think that that would be enough.
Anyone know if U of Wisconsin requires a second person for their appointments? I will be starting the eval process there shortly.
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Anyone know if U of Wisconsin requires a second person for their appointments? I will be starting the eval process there shortly.
I'm wondering the same as I have an appt with them on 23 May. By that time, I will have already accrued almost 2 years on the UNOS list and really don't need my husband to be there with me. He is going to drive me up there, so he will be in da house, so to speak, but I'd really prefer him to wait outside or go back to the hotel because I don't want to have to worry about him getting bored. I've been through these initial pre-eval appts before, and they are LONG.
I did get a letter from Madison giving me a list of things to bring to the appt, and one of them was "a companion" as there will be a lot of information to take in, but I don't know if it is a REQUIREMENT.
Cattlekid, who is your coordinator up there? Have you been assigned one yet?
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So far, it's Joan Bradley-Bartleson. I have to admit, I dragged my feet on the paperwork. I got it back in November and was told there was no way I was going to see a surgeon before the first of the year. So I didn't bother sending the paperwork in over the holidays. Fast forward to now and I just got the paperwork turned in last week. :oops; So I don't even have a first meeting set up yet.
By the time I get up there and get approved, I'm sure I'll have a whole year on the UNOS list already accrued. I've been on the list here in Chicago since June 15th of last year.
Anyone know if U of Wisconsin requires a second person for their appointments? I will be starting the eval process there shortly.
I'm wondering the same as I have an appt with them on 23 May. By that time, I will have already accrued almost 2 years on the UNOS list and really don't need my husband to be there with me. He is going to drive me up there, so he will be in da house, so to speak, but I'd really prefer him to wait outside or go back to the hotel because I don't want to have to worry about him getting bored. I've been through these initial pre-eval appts before, and they are LONG.
I did get a letter from Madison giving me a list of things to bring to the appt, and one of them was "a companion" as there will be a lot of information to take in, but I don't know if it is a REQUIREMENT.
Cattlekid, who is your coordinator up there? Have you been assigned one yet?
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Cattlekid, JBB is my coordinator, too. So far, she has been efficient and has quickly responded to a couple of questions I emailed to her. Maybe we can talk more about it at our meetup in a couple of weeks.
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Mine required a companion. I was glad in the end, because a second pair of ears and someone taking notes is very helpful. It also helped educate the person with me. But, I wanted this so much that if they had told me to stand on my head and twirl a baton, I would have said, of course I will! It is the only process that I complied with completely. They made the rules and I wanted a kidney, so I played by their rules. I am very independent and like to do everything by myself, but for once, I listened and did what they told me. Good luck.
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I don't think Madison requires that you bring anyone, but it's been so long I may just not remember. I cannot even recall if G came to that eval or not, I think he actually did and it was an enormous waste of his time and holiday. Two of the five hospitals where I had evals did require a support person. I ignored that and no one brought it up. Deanne, that is madness that that hospital demanded that you have someone at every visit. What a pack of control freaks.
Northwestern was one that definitely said in their info packet that you should bring a support person along. I think they even reiterated this over the phone, but again, no one said a word when I arrived solo. The mood I was in for some of these evals, I think I would have burnt the place down if they tried to tell me that I had to come back another day because I did not have anyone along with me.
That being said, Jan, unless your husband really knows what he's talking about when it comes to transplant, I would not waste time playing games with these people. They are pretty famous for holding looooooong grudges. I have read about centres denying people solely on the basis of not bringing a support person. If your husband can hold his own when discussing transplant with nephrologists, then he might get away with it, or they might not take that rule that seriously, or they may be so scattered (Northwestern) that no two people really have the same idea of what the rules are supposed to be. If you can spare the day off, I would probably just go. I do love the image of him perpetually stalling, like you're some Snuffalupugus or something. (remember when he used to be the friend that only Big Bird saw...? Sorry. I have young kids and am forced to revisit childhood on a regular basis.)
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Thanks for that, Cariad. My husband wants to chauffer me up to Madison, so he'll be around anyway, and I plan to just ask them what they want me to do with him! My husband, bless his heart, wants to be supportive, but he really has no interest in the general subject whereas I find it all rather fascinating and am prone to asking questions that might be a bit too "profound", like how has U of W incorporated the new knowledge about suPAR into their post tx protocol for fsgs patients? I don't think such a question would occur to my husband. LOL! His is a very stressful job, and he has not been getting enough sleep lately, and I am truly concerned that he might fall asleep during the appt. At my last appt at Rush, I returned to the waiting room to find him snoring away.
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OK, I had to look up SuPAR because I thought it was a gene, but no, it is a 'circulating factor' but I think it will have to eventually be linked to a gene or set of genes. (Maybe they already have suspects).
Anyhow, it seems that pre-transplant might offer more benefit, since by the time it gets to recurrence of fsgs in transplant, you are looking at salvage therapy, aren't you? Would you be willing to undergo some fairly intense pre-transplant treatments based on their initial knowledge of this? I saw plasmaphereisis and monoclonal anitbody therapy mentioned for pre-transplant. I don't know that I would bother based on the well-supported theory that if it takes until mid-life to pose a problem it probably won't recur quickly enough in the transplanted kidney to destroy it within your lifetime. I might suggest, based on my run-ins with these doctors, that you rephrase the question to be more open-ended: Have you made any changes to your post-transplant protocol..... etc. I only say this because if they have not altered their protocol at all, your question will likely serve to put them on the defensive. I've mentioned how much I hate that hospital, and it's all down to the obnoxious coordinator (she's gone now) and the doctors who seemed to want to bully patients into believing that they were the only ones who could help you. It was my belief that I actually wanted something that they were unable to give me that led to that conversation with the one doctor who tried to convince me I was about to die, die, die. It was incredibly traumatizing, probably because he seemed to enjoy telling me this.
At any rate, with most transplant hospitals you are discharged to your own nephrologist quite quickly after the fact, so they will probably push post-transplant responsibility off on him, but I am eager to hear their answer. Discharging after transplant was definitely a big issue with Madison because I did not have my own nephrologist when I first went to see them, and they kept stressing that they were not my doctors and that I needed to sort this out. Oh, and I remember the name of your coordinator from a letter I was sent probably two years ago, telling me that she was my new coordinator. That was the other creepy thing about Madison (the memories are flooding back!) they would send me letters out of the clear blue telling me that I MUST make an appointment with them or in one icky episode, that the doctors were worried about me because I was pregnant. (WHO TOLD THEM?! I never did learn!) They don't seem to understand that they've been let go. I suspect they only have the one coordinator for the entire program.
In terms of what not to say at an eval, I'm not sure there is *anything* you could say to turn off Madison (if there is, please share so I can say it to them) other than "I don't have any way to pay for this." They wanted to perform the transplant when I had a GFR of 30, proving that one need not even truly be in ESRF for them to be perfectly happy to cut you open and collect their Medicare compensation. Sorry, I just really hate that place. I hope to hear that they've improved beyond anyone's expectations. Please let me know how it goes. Best of luck to all who are Madison-bound.
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Cariad, yes, I agree that some sort of pre-tx protocol where the goal is to diminish the level of suPar would be preferable, but the research is not there yet, and for those of us who are already on the wait list, it's probably too late, anyway, unless it is determined you have a particularly aggressive form of fsgs, which I apparently do not. Mine is slow and plodding. It seems that up to now, most of the research in this area is going to post tx allograft conservation, but I don't see why there would be a vast difference between post and pre-tx procedures, but then again, I'm no nephrologist.
For me personally, I did ask the tx surgeon at Rush about recurrence of fsgs in a new kidney, and he gave me the standard answer, that if I was slow to develop it pre-tx, then the same would probably hold true post tx. For this reason, I don't really think that I'd be willing to undergo intensive pre-tx treatment as there really is not much to salvage. I'd rather not prolong the inevitable if I don't have to.
I will be very careful about not phrasing questions that might put Madison on the defensive. Thanks so much for that warning. I don't want to go into my appt with any preconceived ideas, but I do appreciate being given the heads up. If you hate them so much, there must be a good reason for that, so I will be on my guard.
Now, I am very interested in your statement that most transplant hospitals discharge you to your own nephrologist as that is not the case at Rush. I happen to like my neph, so when I asked Rush when I would start seeing my own neph again post tx, I was taken aback when they replied, "Oh, probably never, although your particular neph does seem to like to keep tabs on his past patients." If Madison is that bad, I'd be thrilled to be able to see my own neph, but to be fair, I don't know what his experience is in transplant nephrology. Madison told me that he sends them a lot of his patients, so maybe there is a relationship there that I can rely upon. I will certainly find out more about this.
Forewarned is forearmed, so again, thanks for the warnings. I'd like to think that I am old enough that others' bullying tactics just make me giggle, but we are dealing with a life or death situation, so I'm not sure how much giggling will be involved. I do know that they have an entire phalanx of coordinators now, so maybe my experience will be better than yours. I'll be sure to let you know!
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Huh! Northwestern was going to discharge me to my own nephrologist after the standard 3 months, it was only by luck of the trial that I never had to face trying to find that elusive Milwaukee nephrologist who was not a complete disgrace to the profession. That is very interesting that Rush does not do that. Your nephrologist sounds like one of the better ones out there. He seems to be keyed into getting the patient what she wants, rather than imposing his own agenda on you, and I have no doubt that you will get a transplant off the list very quickly in Madison.
Sorry for going off on a rant about Madison. I should really censor myself better, but there is something about that hospital that brings it all up again. :P That hospital had the doctor that basically told me that if I got into a clinical trial (which emotionally I saw as my only option) I would die of GVHD. He said this was especially the case because I had already had a transplant. I am angry at myself for believing him. It was only some 18 months later when I was so sick and so depressed that I decided 'to heck with it, if I die, that's fine, I have to take this chance' that I looked up the trial at Harvard and immediately learned that the first person they operated upon was also on her second transplant. That was well and truly the final straw and what made all of my bad experiences coalesce into this idea that they were really only out for themselves. Now, in the intervening years they did lose their Medicare certification and subsequently regain it, so they were obviously forced to take a long, hard look at their own practices and implement some changes. Definitely a great idea to try to clear your head off all of these different experiences (sorry again! :)) and judge them on their current approach to your case. I suspect they are going to really, really want to be your transplant hospital as you are young and exceptionally well-educated on all of this, so one would hope that they at least have the sense to treat you with respect. Initially, I really liked them, but it was that one particular doctor and my coordinator (who as I've said is long gone) that really changed my view of them for life.
I hope to hear that you feel confident in them, and that your relationship with them as a pre-transplant patient is very brief indeed! I'll be following your story.
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MooseMom, I was released to my own nephrologist after 9 months. Still see the surgeon once a year (so I have been back once-lol!) and now labs once a month locally, but sent to UNC, so they always are on top of my numbers. And I have gotten the same answer regarding FSGS and a new kidney, so I am just counting on mine being very slow to progress this time too. I was very surprised that the new one had FSGS 2 weeks post transplant. There is always new things to learn and it seems that all centers do things "their" way. I'll be so happy when you get the call and it is really your kidney.
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Cariad, no need to apologize. I WANT to hear about your experiences, although I do recognize that you were a much more complicated patient than I am. I don't have the whole clinical trial issue to contend with. My case is pretty straight forward compared to the horrors you had to endure.
Paris, I, too, and rather astonished that fsgs has already returned to your new kidney. However, you are right...as long as it is working well enough, then it's still a miracle! Have your docs suggested doing anything to stop the reoccurrence, or are they just keeping an eye on things?
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I have an appointment for initial eval at Madison on Sept. 28. My coordinator is Mary Shanahan.
Probably not a good idea to tell them the dog likes to supervise my home hemo, huh? :rofl;
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I told the coordinator at Madison that I had a dog and they had NO problem with it, other than to tell me not to walk him for a while after my surgery because of the potential for pulling.
I am so excited for you! I believe you will find Madison to be friendly and efficient. :yahoo;
I have an appointment for initial eval at Madison on Sept. 28. My coordinator is Mary Shanahan.
Probably not a good idea to tell them the dog likes to supervise my home hemo, huh? :rofl;
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There are only a few factors that are important:
1. Can you pay?
2. Are you medically a good prospect?
3. Are you someone they will expect will have proper support and follow instructions?
4. Can you continue to pay for the rejection meds?
#1 and #4 are probably the most important.
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Do not tell them that your dream career is to be an infectious diseases doc
:rofl; :rofl; :rofl; :rofl;
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Do not tell them that your dream career is to be an infectious diseases doc
:rofl; :rofl; :rofl; :rofl;
Now I am REALLY :rofl; because I just got an email today wanting to know if I am interested in a "Director-level Infection Prevention position...". Ahhhhhhh, think that may not be such a hot idea........... :rofl; :rofl; :rofl;
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...though I guess I could show up for work in a Biohazard suit.......
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What NOT to do or say at the Transplant Evaluation...
Don't tell them you're buying a kidney from Craigslist.
Don't excuse yourself for a cigarette break.
;D
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"I forget....is this a medical marijuana state? Can you write a prescription at the evaluation?"
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Ask "Do you know if BEK transplant is still in operation? Their web site has been down for a few years, but it looked like a viable option with fresh kidneys from Chinese prisoners".
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:rofl;
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What not to ask:
I know "buying" a kidney is illegal but could I just trade something for one? :angel; :rofl;
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"Can I get post transplant support here if I buy a kidney in India, China or the Philippines?"
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Do not bring 76/35 BP into the last appointment with the transplant coordinators.
Freaks them out.
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"Can I get post transplant support here if I buy a kidney in India, China or the Philippines?"
That is something that I have wondered about but have been afraid to ask in case someone thinks I really mean to do it. Over here post transplant drugs are provided free for life (of the kidney) along with any treatment needed. I have often wondered if someone came back to England with a kidney they got illegally, would the government still pay for the meds? ( My guess is "Yes, but for a while you would be taking them in jail.")