Aa
test weary
When I went for qualification interview for liver transplant the coordinator asked me 4 or 5 times how much pot did I smoke then how much did I smoke recreationaly then how much did I smoke at home then how long had i been smoking I told her none to all of these then she started on the cocain and Rx none then back to the pot. I am 59 yrs old and dont use drugs of any type in any amount. but it looked like I was supposed to say somthing so I said when I was 18-20 I might have tried pot at a party but that was almost 40 yrs ago and I dont have anything against it but I dont smoke or use any type of drugs. aprx 2 wks after taking blood alch & urine drug screen I was called by the lab nurse at hospital & told I had to give another blood alch and urine test I asked why & was told my Ins. Co required it. I called them & was told no so I refused to take another test. Then the transplant coordinator called back & apologized & said actualy it was the hospitals finance dept. that required it. I told her if they required it my ins.co. would have told me so & not to call me again but to call my doctor if they needed any more tests. then she called back and said if I didnt take another test she was going to give me all positive scores on the results and this would keep me off the organ transplant list. She said I had tested positive for marjn and I had to have three negative tests in a row to clear this up. I asked for a copy of the test & they mailed a test that had no amounts or any proof it just said positive in that area. I called my hepa & was told just go along & it will go away, so I gave another test then another & another & another & another the last 2 were friday wk ago & following mon. I was at the hosp & got into argument and when I asked why weren't their any scores on the test to show how much the same coordinator said "well the reason it says positive on the test is because you told us you smoked marj and everyone who has a history of drug use is subject to required random testing at any time. This is required by UNOS. I was giving them quite an earfull when the doctor there said" its just 1 more test then you'll be cleared. I asked them to mail me a copy of the lab work and last two tests before leaving, they said they would. I didnt get them after a week & called & asked for them again & was told they would send them right away that was a week ago, Still no labs or tests but while talking to coordinator on the phone I asked "now 1 more test & this will be cleared up right?" she said no anyone with a drug history is always subject to random testing from now on. I said thats not what youve been saying and this is the first time I have heard about this. She said well UNOS requires it and we can't do anything about they're protocol. This is starting to look very suspicious to me and I dont think I want this person making these decicions about me or my medical treatment. I told my hepa each of these events & was told there was nothing they could do. I don't want to continue all these tests but I certainly don't want this to knock me off the list they said I was on but are now telling me that acually this is some kind of trial then I go to class for three days then I will be considered for going on the list to recieve a liver. I feel I am being treated unfairly and unprofessionaly. If anyone has any good ideas please let me know
thanks griz
thanks griz
I don't get why they are subjecting to all the tests? Seems like a lot of expense that someone would want to eliminate.
I'm sorry if I came off harsh :-) I had a difficult coord also, and a clinic that had a lot of negative energy (at the time I was listed). I think their job is difficult and maybe even overwhelming, but from the patient side it is a huge frustration sometimes.
I'm sorry if I came off harsh :-) I had a difficult coord also, and a clinic that had a lot of negative energy (at the time I was listed). I think their job is difficult and maybe even overwhelming, but from the patient side it is a huge frustration sometimes.
I know this'll probably surprise a few people, but if you'll read my 1st post again and the post I accidentaly put on the forum page to Hector, you will see that I wasn't trying to make a pro or con statement about drugs or alchohol or taking the same tests that everyone else takes or how many times I have to take the test. Look at it subjectivley & I think you'll find my point was, I Never Scored Positive on the test according to tho co-ord. I was told by co-ord "the reason it says positive is because I told them I smoked marjm", which never, ever happened. I feel the rest is explained between the two posts and this "guide line post", if I may be so bold & my answer to Elaine, whose comments & encouragement along with Hectors, I will always remember, as I felt I found 2 new friends in 1 day. What a tremendous blessing, even if these people decide I will not be chosen for their list of people to recieve, when it is my time to go, experiences like these with all the caring people like I have spoken to at this forum, will keep me feeling strong and make parting a happier event in my life.
I'm sorry I can't return any more posts for a few days but I'm out of town till sat.
Thank You All for your concern,
With Luv Griz
I'm sorry I can't return any more posts for a few days but I'm out of town till sat.
Thank You All for your concern,
With Luv Griz
I used drugs when I was a teenager some 35 years before I was diagnosed. I was not aware of being subjected to any random drug tests, but I was getting a medical test of one form or another constantly during the time I was a candidate for listing. I told them I did not drink or smoke, and that I had not used drugs for over 35 years.
As far as drug tests, random or otherwise, my attitude was "bring them on".
Personally, I am inclined to support legalization, or decriminalization, of most all drugs. But this is a medical issue and not a legal one.
Deb's makes the point best: there are two people who died on the transplant list so that her friend could have another chance. He did not care enough about these gifts, or was simply not able to control himself. In either case, there were two more lives that could have been saved. He died anyway, and not from lack of medical care.
If you need a liver transplant, you should care enough to stop using even MJ, or anything else the transplant center wants you to do. If you are doing this, then why bother about whether they are wasting money by continued testing?
Hector's advice is right on and the kindest. It is in your vital interest to go along with the program.
As far as drug tests, random or otherwise, my attitude was "bring them on".
Personally, I am inclined to support legalization, or decriminalization, of most all drugs. But this is a medical issue and not a legal one.
Deb's makes the point best: there are two people who died on the transplant list so that her friend could have another chance. He did not care enough about these gifts, or was simply not able to control himself. In either case, there were two more lives that could have been saved. He died anyway, and not from lack of medical care.
If you need a liver transplant, you should care enough to stop using even MJ, or anything else the transplant center wants you to do. If you are doing this, then why bother about whether they are wasting money by continued testing?
Hector's advice is right on and the kindest. It is in your vital interest to go along with the program.
Gee thanks.
I am trying to have a reasonable and balanced view point based on medical data. I try to turn my own experience with HCV and cirrhosis into something informative that might be helpful to others and prevent them from progressing to cirrhosis. And for those with cirrhosis, I hope I can be supportive because we are all in the same boat. Some sicker then others but still sharing many common issues.
I think I have a long way to go in contributing but it is something I think it is worth working on improving. I admire yourself, Bill, Elaine and many veterans of this forum.
I appreciate your positive feedback. It is encouraging. Thanks.
Hectorsf
I am trying to have a reasonable and balanced view point based on medical data. I try to turn my own experience with HCV and cirrhosis into something informative that might be helpful to others and prevent them from progressing to cirrhosis. And for those with cirrhosis, I hope I can be supportive because we are all in the same boat. Some sicker then others but still sharing many common issues.
I think I have a long way to go in contributing but it is something I think it is worth working on improving. I admire yourself, Bill, Elaine and many veterans of this forum.
I appreciate your positive feedback. It is encouraging. Thanks.
Hectorsf
Hector you go so far out of your way to always be even handed it really impresses me greatly :)
I don't think it is totally an issue of pot being illegal. Alcohol is legal but a pre-transplant patient is not premitted to use alcohol. First because it is toxic to the liver and second if a person had a history of alcohol abuse they have a good chance of abusing it in the future whether pre-transplant or post transplant.
There are two studies I am aware of about the use of daily cannabis smoking. Both concluded that daily cannabis smoking is a risk factor for fibrosis progression in chronic hepatitis C patients. I am not making any ethical or moral judgment on the use or cannabis or any other drug. Any drug taken by a person with advanced cirrhosis can stress the liver and lead to progression of the disease or acute liver failure.
This coming election day California citizens will vote to decide if they want to legalize cannabis in the state. Whether this happens of not it will not change the prohibition on its use for transplant patients. It is a medical issue not a legal one.
Hectorsf
There are two studies I am aware of about the use of daily cannabis smoking. Both concluded that daily cannabis smoking is a risk factor for fibrosis progression in chronic hepatitis C patients. I am not making any ethical or moral judgment on the use or cannabis or any other drug. Any drug taken by a person with advanced cirrhosis can stress the liver and lead to progression of the disease or acute liver failure.
This coming election day California citizens will vote to decide if they want to legalize cannabis in the state. Whether this happens of not it will not change the prohibition on its use for transplant patients. It is a medical issue not a legal one.
Hectorsf
PJ we had a friend who must have stayed clean enough to get a new liver. Then as soon as he got it he went right back to partying. Never treated the hep - destroyed that liver too. Then he "found God" and had a whole bunch of people testifying to how his life had changed. Got another new liver. Destroyed that one too and died.
So I believe that they really try to find out who is REALLY serious about it and this is probably the only way they can try to do so with such a liver shortage. Whether pot should be legalized or not - it still is considered a 'gateway' drug and it stays in your system much longer than booze or cocaine.......so it would be something that they could do to monitor how sober they think a person is.
Of course, someone who is looking at being transplanted should be doing everything they can to take care of whatever liver function they have left but unfortunately with a vast portion of HCV patients being addicts......................not so easy.
In my mind that seems to be what it is really about. If I were only had one liver to give away I certainly would want to make sure it went to the person who would respect it the most and gain the most out of it rather than someone who would abuse it and destroy it. That only makes sense.
So I believe that they really try to find out who is REALLY serious about it and this is probably the only way they can try to do so with such a liver shortage. Whether pot should be legalized or not - it still is considered a 'gateway' drug and it stays in your system much longer than booze or cocaine.......so it would be something that they could do to monitor how sober they think a person is.
Of course, someone who is looking at being transplanted should be doing everything they can to take care of whatever liver function they have left but unfortunately with a vast portion of HCV patients being addicts......................not so easy.
In my mind that seems to be what it is really about. If I were only had one liver to give away I certainly would want to make sure it went to the person who would respect it the most and gain the most out of it rather than someone who would abuse it and destroy it. That only makes sense.
wow what a bunch of complete freaking BS.... they need to legalize/decriminalize marijuana NOW, it is already approved for medical use in many states, i dont get this i really dont its ridiculous
That's why I'm trying to encourage you to do as
they say, there may be a few you don't get along
with along the way....but just move past it and think
of the long term...repercussions.
There are so many people that need livers and sadly,
there are not enough to go around. Consider yourself
lucky to get listed and stay compliant as this will help you.
You have to work with them, and do what they say,
this is a test to see if you will comply. There are so many
things now days that could prevent a liver TP, don't let this
get in the way. Look at the big picture....if a liver should
become available and it matches you....you want it, you
need it to live.
If you have the time and feel healthy enough to travel
you can always get listed in other regions/states/countries.
That is always an option, however, in most cases you
will have to repeat all of the tests you were already given at
your current TP center.
All my very best Griz, I mean that sincerely,
Elaine
they say, there may be a few you don't get along
with along the way....but just move past it and think
of the long term...repercussions.
There are so many people that need livers and sadly,
there are not enough to go around. Consider yourself
lucky to get listed and stay compliant as this will help you.
You have to work with them, and do what they say,
this is a test to see if you will comply. There are so many
things now days that could prevent a liver TP, don't let this
get in the way. Look at the big picture....if a liver should
become available and it matches you....you want it, you
need it to live.
If you have the time and feel healthy enough to travel
you can always get listed in other regions/states/countries.
That is always an option, however, in most cases you
will have to repeat all of the tests you were already given at
your current TP center.
All my very best Griz, I mean that sincerely,
Elaine
Thank you for your kind comments and words of encouragement. I try to be friendly with everyone, including Drs & Nurses. I posted that help wanted because I feel I am having somthing like, a personality problem with one person. There are several threats that have been made about if I don't do exactly as they say I will automaticly be disqualified whether from a list or future list, and I know I give lots of blood samples so what is one more, right
but after hearing this enough times I have to ask myself, if this is the way they feel about me what is to prevent them from waiting untill a transplant is immediatly necessary (they say I'm 3 or 4 now) and at the last telling me I'm disqualified. I thought perhaps someone would say somthing like, get out of there now or something else helpfull like Griz, everyone is treated that way try to get over it fast.
Thank You much
but after hearing this enough times I have to ask myself, if this is the way they feel about me what is to prevent them from waiting untill a transplant is immediatly necessary (they say I'm 3 or 4 now) and at the last telling me I'm disqualified. I thought perhaps someone would say somthing like, get out of there now or something else helpfull like Griz, everyone is treated that way try to get over it fast.
Thank You much
Please excuse me here a minute, when your life is on
the line and you need a liver, you don't slap anyone !
You are at their mercy so to speak. These are not just doctors...they
are highly respected qualified coordinators and surgeons. I battled
myself a little but did it with respect and honesty.
Girz, Do the drug test again and again if needed...you need to get listed.
Hector , I agree with everything you said.
the line and you need a liver, you don't slap anyone !
You are at their mercy so to speak. These are not just doctors...they
are highly respected qualified coordinators and surgeons. I battled
myself a little but did it with respect and honesty.
Girz, Do the drug test again and again if needed...you need to get listed.
Hector , I agree with everything you said.
Maybe Elaine said it better then I ever could.
The first thing I would do if to try to calm down. This disease is very stressfull and I understand your frustration but I'm afraid fighting the transplant center is a no win strategy. They have all the cards. You need their help. You must meet their requirements. They have to choose who gets a new liver because there are not enough livers for everyone who needs one. Getting a transplant is not a right, you need to be chosen to get on a transplant list. As in many things in life sometimes you have to jump through hoops to reach your goal.
It is difficult so follow exactly what happened. I can say that what you say near the end is not true. “I don't want this to knock me off the list”. How could you get knocked off the transplant list when you are still being evaluated? Prevent you from getting on the list possibly, but not “knocked” off. You are not listed until completing all requirements. And as Elaine said you can be taken off of the list at any time.
You should have received reading materials that tell you all the steps and requirement you needed to get listed. You will receive a letter stating that you have been listed or if you have not been listed, the reason why you are not listed. There should be a list of items that are preventing you from being listed. The process at each transplant center is a little different so it is hard to compare your experience with mine. And yes there is a class that needs to be attended and sometimes it is required that you attend a support meeting of pre-transplant, post transplant patients and their caregivers.
The bottom line is you will need a new liver to continue living. I would bend over backwards to have them like you. Social skills count. Assuming your hepatologist knows you and asked to put you on the transplant list, they should be your advocate. They should support you through the process. Unless there is another transplant center that you can go to, I would do whatever they want you to do. Refusing to take a drug test or refusing to meet ANY requirement can keep you off the list. Giving them an earful may feel good temporarily but it the long run can bite you. It may feel good temporarily to be right, but as you get sicker and sicker, you will need the transplant center to keep you alive until you get a new liver.
Why does it matter if they do random drug testing? Or who wants it. UNOS, transplant center, whoever? As long as you are drug free why should it matter? You will be having blood tests all the time in the future as a transplant center must monitor your MELD score and watch for signs of progressing liver disease. So you will need to get used to having your blood taken regularly.
If the drug test for cannabinoids said positive. It means the drug was detected in your urine when the test was given. How many false positives can there be? I have no idea. But repeated testing will determine if it was a false positive.
By the way, I did use pot and opiates 40 years ago. But that past experience has nothing to due with current blood test results. "well the reason it says positive on the test is because you told us you smoked marj.” Not true. The reason they are testing you and me and everyone else is that people may be practicing self destructive behaviors that may reduce their chances of surviving a transplant. It doesn’t make sense to give a scarce liver to someone who will end up dying because of their behaviors when that liver could have saved someone else’s life. Blood test for drugs can only detect drugs within a short time period. For instance, opiates can only be detected 1 or 2 days after use. This is all common sense.
Sorry for the harsh critique but I hope you find something you can use here that might help you to manage your way through the listing process. Like liver disease it is all a challenge, nothing comes easy.
Best of luck.
Hector
The first thing I would do if to try to calm down. This disease is very stressfull and I understand your frustration but I'm afraid fighting the transplant center is a no win strategy. They have all the cards. You need their help. You must meet their requirements. They have to choose who gets a new liver because there are not enough livers for everyone who needs one. Getting a transplant is not a right, you need to be chosen to get on a transplant list. As in many things in life sometimes you have to jump through hoops to reach your goal.
It is difficult so follow exactly what happened. I can say that what you say near the end is not true. “I don't want this to knock me off the list”. How could you get knocked off the transplant list when you are still being evaluated? Prevent you from getting on the list possibly, but not “knocked” off. You are not listed until completing all requirements. And as Elaine said you can be taken off of the list at any time.
You should have received reading materials that tell you all the steps and requirement you needed to get listed. You will receive a letter stating that you have been listed or if you have not been listed, the reason why you are not listed. There should be a list of items that are preventing you from being listed. The process at each transplant center is a little different so it is hard to compare your experience with mine. And yes there is a class that needs to be attended and sometimes it is required that you attend a support meeting of pre-transplant, post transplant patients and their caregivers.
The bottom line is you will need a new liver to continue living. I would bend over backwards to have them like you. Social skills count. Assuming your hepatologist knows you and asked to put you on the transplant list, they should be your advocate. They should support you through the process. Unless there is another transplant center that you can go to, I would do whatever they want you to do. Refusing to take a drug test or refusing to meet ANY requirement can keep you off the list. Giving them an earful may feel good temporarily but it the long run can bite you. It may feel good temporarily to be right, but as you get sicker and sicker, you will need the transplant center to keep you alive until you get a new liver.
Why does it matter if they do random drug testing? Or who wants it. UNOS, transplant center, whoever? As long as you are drug free why should it matter? You will be having blood tests all the time in the future as a transplant center must monitor your MELD score and watch for signs of progressing liver disease. So you will need to get used to having your blood taken regularly.
If the drug test for cannabinoids said positive. It means the drug was detected in your urine when the test was given. How many false positives can there be? I have no idea. But repeated testing will determine if it was a false positive.
By the way, I did use pot and opiates 40 years ago. But that past experience has nothing to due with current blood test results. "well the reason it says positive on the test is because you told us you smoked marj.” Not true. The reason they are testing you and me and everyone else is that people may be practicing self destructive behaviors that may reduce their chances of surviving a transplant. It doesn’t make sense to give a scarce liver to someone who will end up dying because of their behaviors when that liver could have saved someone else’s life. Blood test for drugs can only detect drugs within a short time period. For instance, opiates can only be detected 1 or 2 days after use. This is all common sense.
Sorry for the harsh critique but I hope you find something you can use here that might help you to manage your way through the listing process. Like liver disease it is all a challenge, nothing comes easy.
Best of luck.
Hector
I think your Cordinator *****... I suspose those transplant teams may have some sort of protocol But the way you were questioned would imply that you are a dirty liar. And I might of been tempted to slap the persons face. I certinally would have a time putting my life in the hands of a person who called me a dirty liar. Insulted my integrity, told me I failed a test that I knew I did not. And lied to be about who said what. Is this person saving a liver for someone they like better than you? Is a cordinator some sort of doc? If so they only have a licence to practice I think you and I need to go to my vet! Or maybe we need to send ole Robo229 back to school for retraining. lol..Seriously. Is there some place else you can get treatment. Or another lab you can use. Maybe your Cordinator had to take a pee test. So he or she swapped blood or urine. Your Cordinator *****, ***** *****... Oh and unfortunitally you probally also pissed them off . Yikes shoot. That brings me to a memory of what happened to me @ Gallagher Motors in Reno. one time. lot boy didnt show up, snowy ugly wet day., I was moving the blockers myself(cars that block driveway) I had alot of high end cars and tons of Vets. So Ugly dude comes on lot. asked how much a vet cost. I tell him, he ******* thats too dam much money. He asked me to unlock it. I went and got key. I asked him not to put his feet in. he does . Thanks I said (he wasnt gonna buy it anyways) he called me a b--ch. grrr. I said buddy. You need to buy a Vet, because your so ugly, its the only your ever gonna get any P-ssy! (I was after the general manager, so I sure could say that.lol) Then I needed emergency surgery, for tubal pregnancy. Low and behold in walks the an-o-steege-e-oligist (g.m's dont have to be able to spell, we hire people who can lol) And its the dude I argued with. (oh **** I'm gonna die on the table) And I was gonna let him kill me by not saying anything. He excussed himself and in walked a happy hawian dude. Whew. When I awoke (thank God) Donna was in the opperating?room. ( I sold her a S.U.V. when nobody else would) She said Ginger, how have ya been? Then she said your in pain arnt you? Every time I opened my eyes she said your in pain arnt ya? each time she gave me something? that knocked my *** out. Goodluck to you grizwald. I hope your as luckie as I was. ginger
Congratulations for making it this far.
These drug tests are at random and you have to be
100% in compliance to be listed.
I don't recall if the tests actually say pot. So...you could have taken
a prescription of some kind?, I know you have got to be clean and you are
so go ahead and do the blood work.
Even if you state time and time again you have never used
drugs or alcohol, they will still test you. My son had to go
in once twice in one week.
It would be to your advantage to just do it...(I hate to say it)
but they can test you right up until you get a TP.
You many also be required to do some of the tests over again
as this is a lengthily process. Just when you think you're done,
they will call with something else.
I hope you get your TP and then all this will have been worth
it . It may seem like a circus now...but trust me it will be well
worth it..The TP coordinator actually has more pull with these
things then the doctors, they report directly to the TP surgeons..
I wish you the best as you move forward.
Elaine
These drug tests are at random and you have to be
100% in compliance to be listed.
I don't recall if the tests actually say pot. So...you could have taken
a prescription of some kind?, I know you have got to be clean and you are
so go ahead and do the blood work.
Even if you state time and time again you have never used
drugs or alcohol, they will still test you. My son had to go
in once twice in one week.
It would be to your advantage to just do it...(I hate to say it)
but they can test you right up until you get a TP.
You many also be required to do some of the tests over again
as this is a lengthily process. Just when you think you're done,
they will call with something else.
I hope you get your TP and then all this will have been worth
it . It may seem like a circus now...but trust me it will be well
worth it..The TP coordinator actually has more pull with these
things then the doctors, they report directly to the TP surgeons..
I wish you the best as you move forward.
Elaine
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