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Author Topic: Marijuana use and dialysis/transplant listing  (Read 14578 times)
cheesefania
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« on: March 24, 2009, 12:16:59 AM »

I know this topic has been discussed before, I have read threw a few of the threads related to this issue, but as I am new to this forum, I thought I would begin a new thread to discuss my personal situation.

If you read my introductory post, this first part will be repetitive, but for those who haven't I'll reiterate it here.  I had my first transplant in 1998, when I was 18.  Everything was fine for about 8 years or so, and then I made some stupid decisions to stop taking my medication and stop going to the doctor.  It is hard for me to explain to other people why I did this, all I can tell them is that I got caught up in some ideas of self-healing, and at the same time I got very disillusioned toward Western medicine.  The combination of these factors led me to stupidly neglect my health, and I regret having made these foolish decisions.  I still believe in principles of self-healing, but I now think if you wish to use them, it is necessary to use them in combination with Western medicine, to take a more holistic approach to your health.

Now to get to the topic that is the title of this post.  After my first TP, I was diagnosed with a Post-Transplant Lymphoma, and was placed on chemotherapy for 6 months.  I was 19 at the time, and in college, and I had been smoking pot since I was 13.  I had done a fair amount of research by that time on medical marijuana and the pro-legalization debate, and I was aware that chemo patients were one group to whom it was being prescribed, in California, mainly, at the time (1999).  I live in Iowa, so I knew I couldn't get it medically, but I already used it recreationally, so I tried it as a nausea suppressant and it worked magnificently.  I had a pretty steady supply of it available, and I can only recall one time in six months that I did not have any, and I felt pretty terrible that day, until I called a friend who helped me out and gave me some relief.  The alternative for nausea suppression I was given by the hospital was a suppository, and I'll admit, I never tried it, so I can't say whether or not it was effective, but if given the choice between doing something I already enjoy, and sticking a big pill up you-know-where, well, as you can probably imagine it was an easy decision for me.

After I recovered from my cancer, I continued to smoke recreationally, although it had taken on a new therapeutic meaning for me, and for about 5 or 6 years, I used nearly every day, multiple times a day.  During this time, up until the point I quit taking care of myself, I had absolutely no medical complications with my transplant, I finished college, I had no trouble keeping a job, and I lived what I consider to be a pretty good, moral life.  The only things I have ever been arrested for are marijuana-related, except for a couple alcohol tickets I got when I was 20.  I don't consider using marijuana to be a moral issue, and I have never been ashamed or afraid to admit that I used, even to my parents, who weren't exactly fans of it.  But I tried to educate them, and prove through my actions that it doesn't make you a bad person, and a lot of the popular arguments perpetuated by the media and the government against using marijuana are not supported by scientific evidence.

After I quit taking my pills, I continued to use marijuana daily.  I do not believe there is any correlation between my marijuana use and my stopping taking my meds, because I did both for more than five years with no problem, and the reasons I stated above are what led me to stop my meds, irrespective of my marijuana use.  So when I went back to the doctors after nine months of absence, and nine months of not taking any meds, I remained honest about my lifestyle choice, as I was not aware of the policy of my hospital regarding marijuana use in kidney patients.  I had my fistula put in, and started dialysis, and I continued to use marijuana daily.  After my transplant evaluation, I was informed that it was the hospital's policy to require a six month period of demonstrated abstinence from marijuana before I could be placed on the transplant list.  It took me a little while to come to terms with this decision, but my dialysis doctor told me it was more an issue of compliance than a direct health issue, and so I quit using for the first time in 8 or 9 years, over which time the longest I had abstained was about four or five days.

I stayed clean for the six-month period, and completed a two-week substance abuse program, in which we hardly ever discussed marijuana, but rather mostly discussed alcohol, cocaine, and other harder drugs, none of which I had used for quite some time, nor did I have any desire to use again.  We also discussed psychological issues surrounding drugs and addiction, such as depression and anger, but I am a pretty well-adjusted individual.  I always stay optimistic, and keep a positive attitude, and this is the approach I took toward the program.  I tried to get as much out of it as I could, and mostly I tried to help the other people in there, who seemed worse off than me, in spite of the health issues and hurdles I was facing.  I won't say it was a waste of time, but I don't feel like I learned a whole lot that I didn't already know, as I have continued to try to keep myself as informed as possible over the years about marijuana and its effects on the body.  There were times when I felt like I was better informed than the counselors, at least when it came to marijuana.

After the six months were up, I was placed on the list, but my transplant coordinator told me that they still wanted to drug test me periodically.  I found this a bit annoying, but I figured I could continue to stay clean, even though it all seemed pretty arbitrary to me, in regards to my particular situation.  After a little while, I decided, perhaps foolishly, to smoke some weed with some friends.  I have an aesthetic appreciation for high-quality marijuana, just like someone appreciates a fine Scotch, a good cigar, or a nice cut of meat.  Yes there is also an appreciation for the feeling I get from using good marijuana, but arguably the same could be said for the things above.  A friend had some really good marijuana, and I decided to partake, since I was and still am pretty positive that there are no direct adverse effects from using marijuana in relation to dialysis and the kidneys.  I  was basically scheduling my own drug tests, so I figured I could just work out a way to smoke for a little while, then quit for long enough to clean my system out before my next test, rinse and repeat.  I started using more regularly, and I started to put off quitting longer and longer, figuring out ways to get out of my drug tests or postpone them. 

I had a drug test coming up in February, so I quit again, but 5 days after I quit, I went into dialysis, and there were orders for a drug screening waiting for me.  I had postponed a prior test for about a month, because I continued to use over the holidays, and I hadn't taken a test since October, so I guess I was due. A week later, I was informed that the test had come up positive, and I would need to meet with members of the transplant team.  This meeting is scheduled for tomorrow, Weds. March 25, and I'm not sure what to expect.

What bothers me is that I was told the issue was compliance, and I have demonstrated a great deal of compliance in other ways since I began dialysis.  I have never skipped a dialysis session in 14 months, never leave early, always take my meds, always stick to my diet and fluid restriction, I even do yoga and continue to explore some of the other self-healing techniques and ideas I have become interested in over the years, such as Reiki, mediative exercises, and positive affirmation techniques.  I try to take my immediate health into consideration with almost everything I do in life.  Except, I guess, for choosing to start using pot again.  In this case, I sacrificed my potential long-term health for my immediate sense of well-being.  Pot helps me eat, sleep, relax, and it pleases me, both physically and aesthetically, improving my immediate quality of life in several ways.

Perhaps I was short-sighted in choosing to use again, even though I knew I was potentially subject to random tests.  But I also am fairly certain that using causes no detriment to my health, other than the potential consequences I face from the hospital bureaucracy.  I even go as far as to not smoke the marijuana hardly ever, but primarily use a vaporiser, which is a device that heats the marijuana up to a hot enough temperature to catalyze the active ingredients into an inhalable vapor, without burning the plant matter.  This is the method used by many medical marijuana patients, and eliminates all the tars and carcinogenic properties of inhaled smoke.  It is much better for you than smoking marijuana, and in the past few months, I hardly ever would smoke it, because I am concerned about smoking's effects on my blood pressure.

I also spoke to another dialysis patient in my unit, who said that they use marijuana occasionally because it makes them feel better, but they never told anyone, and are not subject to random drug testing.  I almost feel like I am being punished, or at least heavily scrutinized, for having been honest about a lifestyle choice of which I should not be ashamed.  I wonder if I had never mentioned it or admitted to it, if it never would have become an issue.  I don't think it should be the hospital's concern, and it shouldn't be their obligation to enforce laws and social norms.  And besides, there are a whole lot worse things I could be doing to myself, like smoking cigarettes or drinking alcohol, which are untestable but I don't do either.  I could use cocaine, which leaves your system in 48 hours, and probably get away with it, but I don't.  I could use LSD or mushrooms, which are difficult if not impossible to test for in the blood or urine, but I don't do these things.  I could stray from my diet, drink too many fluids, skip a few dialysis sessions, leave early, show up late, skip my meds, and a number of other things that would be worse for me than using a little marijuana, and the consequences would probably be little more than a wagging finger and disappointed dietitians and docs, but I don't do any of these things.  All I did was use a little marijuana, to make my life a little more tolerable, a little more enjoyable.  And I can only wait and see what the consequences will be...

So if anyone is still reading this, I commend you for hanging in there.  I love to write, and I find details to be important to a more complete understanding of a subject, so if I tend to ramble, sorry.  I'm pretty sure no one is being forced to read this.  I hope not anyway. 

If anyone has any advice, words of support, commiseration, similar experiences, or whatever else, I welcome all replies.  Just please try not to criticize or ostracize me, as I am pretty aware of my mistakes, and I am pretty well educated about marijuana as I am fairly active in the medical marijuana movement in my home state of Iowa.  And if anyone has any questions or points to debate civilly, I'll be happy to indulge, if I can.

I'll keep you posted on what happens tomorrow.  Wish me luck!
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"Joy in spite of everything; joy because of everything." - Tom Robbins
Sunny
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Sunny

« Reply #1 on: March 24, 2009, 02:42:57 AM »

Should have kept your use of marijuana to yourself. I am sorry you are now in this predicament. You already know smoking pot can raise your blood pressure. I am also told smoking pot can cause mold spores to lodge in kidneys. One way around this would be to take a pill form that some states allow doctors to prescribe. I can completely understand your need to use marijuana to ease your worries or relax. But if you want another kidney, it's time to play by their rules and be compliant. After using marijuana for so many years, it won't be easy for you to quit. It is your choice, however, and I don't see the medical community changing their point of view on the matter any time soon. I feel for you because it isn't an easy choice for you to make. Good luck.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
monrein
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« Reply #2 on: March 24, 2009, 04:58:52 AM »

I admire your honesty and find it a shame that the medical establishment has taken such a punitive stance.  What is also good is how pro-active you are about not smoking it because that can have adverse effects, like aspergillis mold and spiking the BP.  I know people who eat it or drink it in teas but you have to cook it in oil or butter first to release the THC.  A friend of mine had throat cancer and he got cookies through an organisation called The Compassionate Society.  He kept them in his freezer and used them to combat nausea and pain as well as to stimulate the appetite.  Like you, I wish that someone would do more studies on how to get marijuana into a form that isn't harmful and let's face it we as ESRD patients take some pretty heavy duty toxic type meds so the blanket condemnation of pot seems a bit arbitrary.

Having said all this, I agree with Sunny and I think you just need to bite the bullet and not do it at all until the transplant situation is resolved and you are once again really in charge of your own situation. 
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
paul.karen
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« Reply #3 on: March 24, 2009, 05:27:38 AM »

What a sad situation.

I am going for an transplant evaluation wednesday myself.  I wont be upfront and honest.
I am pro weed.  I think booze cause so much more damage in life and family yet it is acceptable in our society.

So you can be an Illegal Alien fresh out of prison for rape-murder-or whatnot and be a full blown alcaholic and get a transplant before a person who smokes a little weed.
Makes me   :puke;

What is the transplants guidelines for people who smoke cigs??
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
monrein
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« Reply #4 on: March 24, 2009, 05:43:11 AM »

I don't know about the trx guidelines for cigarette smokers Paul but I do know how very harmful cigarettes are for so many aspects of our health in general and this is even worse for transplant patients.  The trx meds increase our risks for cancer of all kinds, our lungs can be very susceptible to pneumonias, heart health is often compromised in dialysis and trx patients so smoking is an added burden and blood pressure is often increased by trx meds so once again smoking compounds that issue making strokes a potential problem.  There is also some evidence that smokers have significantly higher rates of acute rejection post-transplant.

I also know how addictive cigarettes are, I smoked many many moons ago, and how hard it is to quit.  It's one of the worst things that even very healthy people can do however and we ESRD people are starting with a bunch of strikes against us to begin with.  I know some people who've managed to quit with the help of anti-depressants.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
paul.karen
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« Reply #5 on: March 24, 2009, 05:52:15 AM »

I couldnt agree more Monrein.
Smoking is nasty and bad in SO MANY ways.  I have quit many many things in life that i have done and am not proud of.  I even stopped smoking cigs once before back well way back.  Felt very god for many years as a non smoker.  Then i started again.  Long story and stupid reason to restart.  But i did.  And me and karen both will be attempting to stop this weekend coldturkey.
it is a shame that my insurancer will cover me if i get cancer, will pay for many tests that i may not even need half the time.  But refuse to give me any meds that could help me with stopping smoking.   Which could prevent my insurance from paying hundreds of thousands of dollars if i were to get cancer.  To me this is ass backwards but hey im just a little person in a big world what do i know.

And thank you to President Obama who by raising the taxs on cigs is helping me to quit.  Sad he is raising taxs on something so deadly to pay for childrens healthcare?? 
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #6 on: March 24, 2009, 08:37:01 AM »


There are a couple related threads on this subject:
http://ihatedialysis.com/forum/index.php?topic=8445.0 Medical Marijuana User Denied Organ Transplant
http://ihatedialysis.com/forum/index.php?topic=2183.0 My center/hmo is drug testing me on the sly
http://ihatedialysis.com/forum/index.php?topic=8766.0 Does anyone here smoke marijuana for pain?
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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