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geoffcamp
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« on: February 03, 2013, 10:03:29 AM »

Thought I'd bring up a topic that I have not really seen on here before. Does anyone here in the states that are legalizing  marijuana for medical or recreational usage participate?  Are there any advantages for people on dialysis?  Are there any big risk factors other than criminalization to using marijuana in our condition?  Thoughts, experience and opinions welcomed. Hopefully this won't start a crazy posting agreement but rather a civil discussion on the pros and cons without being judgmental. I'm just curious to see what people think about this and how it affects our health and community and if there are reprocussions like being taken off waiting list or losing medical benefits if tested positive even if it is STATE level legal. Ok let's see how this goes!!!   :waving;
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Geoffrey Campbell
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Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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« Reply #1 on: February 03, 2013, 10:32:12 AM »

I personally abhor using anything that messes with my head in any form or fashion.  I don't even like the feeling of getting a little squiffy from one sip of wine too many, so I'm probably not the best person to comment, but I will, anyway. :P

Since federal law decrees that marijuana is illegal, and since federal law does trump state law in such matters, if I was on the tx list, I wouldn't use medical marijuana.  It does not sound like the feds are all that keen on enforcing federal law in states that have legalized it, but I still wouldn't take the risk.  If, however, you're not on the list, then take your chances.

For what specific reason would a dialysis patient use medical marijuana?  Would it be for pain or nausea?  If someone is going through chemo or is afflicted by a malady for which med. marijuana has proven to be beneficial, then I'm all for that.  But would a dialysis patient see any real benefit?  Anyone know?
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kit78
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« Reply #2 on: February 03, 2013, 10:48:07 AM »

My brother was on HD for several years and smoked all the time!  He also would go to Wendy's before HD and get a big burger, fries and a Frosty  LOL and of coarse always took his binders for sure.
He said he had to smoke cause it helped with all the pain.  The hospital knew he smoked and he still got he kidney but all that was a few years ago.  He had his kidney 2 yrs. when he caught every dam supper bug out there and died.   What was odd was that after his transplant he got diabetes from the Prograf.  Very odd as I have never heard of that.
As to what happens these days, I have no idea. I guess once it's legal in your state they can not say anything about it.  I do know one thing, don't smoke if you are having a Gout attack or you WILL be so sorry as it will increase the pain.
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geoffcamp
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« Reply #3 on: February 03, 2013, 10:51:02 AM »

Perfect question and right where I was headed with the post. Is there any benefit?  And if so what is it and is it worth the risk of being bumped off the list?  Do they randomly test when labs are drawn or are we as patients required to be notified of such testing?  I personally don't know of any benefits regarding in usage. Except maybe relaxation. A good nights sleep maybe. I'm not a user and I have not tried it since I was in my younger days years before I was diagnosed with ESRD.  But there has been a lot of changes in thought about it in the last few years. So I have to say I'm curious but scared about the potential consequences if I decided to see for myself if marijuana had any benefit for me.
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Geoffrey Campbell
Diagnosed with ESRD at 26
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« Reply #4 on: February 03, 2013, 10:53:54 AM »

Kit, what was the nature of your brother's pain while on HD?  Was it from the needles, or was it from the effects of the treatments?  I haven't heard very much about HD causing pain.  Nausea, yes, but not actual pain.

Tx drugs can cause diabetes; that's not strange at all.  My tx center gave me a lot of info both pre and post tx about drug-induced diabetes.

I'm sorry to hear about your brother and the trouble he had with infections. :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #5 on: February 03, 2013, 10:58:52 AM »

Perfect question and right where I was headed with the post. Is there any benefit?  And if so what is it and is it worth the risk of being bumped off the list?  Do they randomly test when labs are drawn or are we as patients required to be notified of such testing?  I personally don't know of any benefits regarding in usage. Except maybe relaxation. A good nights sleep maybe. I'm not a user and I have not tried it since I was in my younger days years before I was diagnosed with ESRD.  But there has been a lot of changes in thought about it in the last few years. So I have to say I'm curious but scared about the potential consequences if I decided to see for myself if marijuana had any benefit for me.

As far as being bumped off the list, that may be a question better asked of your particular tx center.  Each center makes its own rules.  I wonder if most tx centers would be ok with medical marijuana usage if you could demonstrate that you had a real need, but I'd also wonder if most tx centers would think that once you were transplanted, you wouldn't need it any more for medical purposes unless you could demonstrate that you had a non-renal condition like arthritis.  I'd also wonder if a tx center might think that post-tx recreational use might make you forget to take your meds or something. 

Obviously, I don't know much about the subject.  LOL!  I just have more questions than answers, I'm afraid.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
geoffcamp
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« Reply #6 on: February 03, 2013, 11:03:26 AM »

I don't seem to have any pain directly related to treatment. Needles never bothered me when I had a working graft or fistula. And with cath for hemo i obviously don't have any pain connecting to machine. BUT I have joint pains that are constant and is painful. Mostly right shoulder, elbow wrist and hand. My cath is on the left side of my chest. I have a very sporadic sleep pattern and I can't seem to get into a regular pattern of getting a good 7 hours or so every night. Right now I'm on a 3rd shift and I usually sleep thru my treatment and then go home and sleep a few hours. But on off dialysis days sleep is hard to do. I usually get in a few hours in wee early hours of day and need to rest more during the day taking naps. Wonder if it would help me fall into a regular schedule.
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Geoffrey Campbell
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In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
geoffcamp
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« Reply #7 on: February 03, 2013, 11:05:55 AM »

Me too. A lot of questions. And I would be afraid to ask center or doctors for fear of a red flag being thrown up!!
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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« Reply #8 on: February 03, 2013, 11:10:10 AM »

geoffcamp, are you in a state that has legalized marijuana?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #9 on: February 03, 2013, 11:18:52 AM »

My center had me sign a release saying I was agreeing to random drug testing without notice when I was put on their list.  They will not let you be on the list with any MJ in your system, legal user card or not.  (I'm in Michigan, where it is legal for patients with a MM card.)

Part of the argument against it is that it is addictive, and if you become addicted and use it after the transplant, the immunosuppresants put you at much higher risk of getting an infection from mold spores that are commonly found in MJ.  Plus, of course, the same sort or cancer risk that comes with any inhaled smoke - cigarette or otherwise.
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KarenInWA
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« Reply #10 on: February 03, 2013, 11:25:26 AM »

I live in WA - the "Evergreen" state (which is named for our trees, not our new MJ law lol) and although I have not discussed this with my transplant team, I know they do not want you to smoke cigarettes while on the list or post-tx, so I assume the same would be true for MJ use as well. I went to the University of Washington, which has been in the news for refusing to list those who take medical MJ. I have no problem with people using it, but it is not for me personally, at least not to smoke. If I ever get cancer in my life (which is pretty much a guarantee, given that cancer is on both sides of my family) I will look into using cannabis oil to treat it. I am not totally against MJ because it IS a natural plant, unlike all the other poisons we all put into our bodies everyday. I know I'd rather date a pot smoker than an alcoholic. I find both a turn off, but at least the pot smoker won't get angry and beat me. You can't say that about an alcoholic.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
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April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
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« Reply #11 on: February 03, 2013, 11:36:41 AM »

Part of the argument against it is that it is addictive, and if you become addicted and use it after the transplant, the immunosuppresants put you at much higher risk of getting an infection from mold spores that are commonly found in MJ.  Plus, of course, the same sort or cancer risk that comes with any inhaled smoke - cigarette or otherwise.

Oh yeah, the mold spores.  I have heard about this, maybe from you, jbeany.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #12 on: February 03, 2013, 11:42:21 AM »

Moose, I'm not sure what was hurting him as he kept a lot to himself about it all.  He just said it helped with the pain.  He hated the cramping, which we all do.  I know I come home with my liver hurting from time to time as I have PLD.  I remember one time a doc told the liver feels no pain. Bull Sh**!!!!!!!!!!  These cysts hurt! and my liver feels like its being squeezed. I wouldn't worry about throwing up a red flag just for asking.  Tell him you were talking with someone about it and it made you curious if people who do get booted of or put to the end of the line. 
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Inherited PKD from my Mother who died at age 52
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2012 Lost Transplant and had Pneumonia
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« Reply #13 on: February 03, 2013, 11:49:33 AM »

The specific indication (at least in WA State) is for nausea http://seattletimes.com/html/localnews/2012897297_medpot15m.html

When I started dialysis and for the 11 years I was incenter it helped with nausea but I also felt like it put me at a pace my body could support - at least that is how I thought of it - and it made the 4.5 hours sitting watching TV more tolerable - being stoned made the boredom tolerable.

EDITED TO ADD: here is the link to a previous thread that went over many of the concern put forward against MJ use - which I continue to contend are nothing more than nanny state tut tutting and overall an effort by rent seekers enforcing the prohibition on MJ  to maintain their business interests.
« Last Edit: February 03, 2013, 12:00:06 PM by Bill Peckham » Logged

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« Reply #14 on: February 03, 2013, 01:12:15 PM »

I don't use it, but if I did, it would be for sleep issues.  I don't know if my sleep issues are kidney related or not, as I've dealt with insomnia since I was a teenager.  I do know that when I did use it recreationally, I always slept so well.  I think it would probably help those with appetite issues as well.  I don't see it as much with adults, but a lot of the kids that I grew up with on dialysis didn't eat, period, and those of us who did eat, were very very picky.  I think it would help with those who find food an issue, because nothing tastes good anymore.
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« Reply #15 on: February 03, 2013, 02:07:36 PM »

Im not the patient here but............. My nephew (southern cali)  got kicked off the 'list'  because of his MJ use so i guess thats up to each unit  to decide.  (personally) I dont agree with that,  as if your using it unaltered, i have seen/heard of others who it has given great sleep reliefe. He did end up with a kidney (from his mom  :2thumbsup; ) so i dont know if it he had to quit first even for that, or that makes it a different situation.    I've often wished i could use but im with MM on this one.  I just cant handle being 'altered'... With my stress these days, i sure wish i could :( 
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« Reply #16 on: February 03, 2013, 03:38:50 PM »

I don't really recall my tx center telling me one way or the other about MM use.  But I figure that they can find any excuse in the book to throw us off the list, so why chance it. 
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« Reply #17 on: February 03, 2013, 03:49:30 PM »

I don't really recall my tx center telling me one way or the other about MM use.  But I figure that they can find any excuse in the book to throw us off the list, so why chance it.

That's why i don't.. I don't want to give them any reason to take me off the list.. I've been put on hold so many times for dumb reasons.. I think that's half the reason I've been on D so long
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« Reply #18 on: February 03, 2013, 04:23:25 PM »

I live in Florida and we do not have MM. Just curious about the states that do and if there really tangible benefits. I too will not try because I just don't even want to chance being passed over for an organ because of it. I must say that in the 11 years (I think) on the waiting list I have never been placed on a hold status. In fact I get my testing letters every year and get them done and a letter about every quarter informing me that I am top status on the list. I think it's a1a or 1a. Something like that. BUT I have never been called even as a back up in all these years either. One would figure statically I would have at least been called as a back up but who knows what's really going on!!  I'm just going thru the motions at this point, as long as I've been listed I can't imagine that there is a snowballs chance ill ever get a cadaveric organ. But I'll stay listed and hope.
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Geoffrey Campbell
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In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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« Reply #19 on: February 03, 2013, 05:49:02 PM »

Geofff, I find that is almost like torture: sending you a letter to say you are top status on a waiting list and for eleven long years, not a beep. I'm with you, statistically you would have expected some sort of call. I do really feel for you.
On the marijuana issue, I have no opinion re the legality but would like to say I can see the benefit re the relaxation side of things. Haemo really plays with my mind - I hate the feeling of being out of control. Mind you, my experience of it is very short and maybe familiarity would bring some resolution. Hope I don't have to find out.
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« Reply #20 on: February 03, 2013, 06:24:21 PM »

Saturday, at dialysis, two of my techs said i need to smoke some before i come in.................... heh (i have a rough time, here lately, at dialysis. I think they are tired of me...)

I personally wish I had some Medical Marijauna.
I wont deny that, even though its not legal here, i have partook in smoking it. It was quite useful to me to smoke a tiny bit before treatments, and after. I didnt feel as nervous going in, and I slept through most of my treatment. Then after, I didnt feel as crappy, or as nauseated...
I think the major thing people dont realize, some people would only use a tiny bit to get them through the day, as opposed to someone who is just toking for the fun of it....
I tried it before i was ill, and didnt much care for it at all. i didnt do it again until years later, on dialysis... i was having horrid headaches, throwing up daily... someone suggested i try. I did, and it made it so much better.
Im on the tx waitlist now, and I cant do that now... huge difference. I am constantly nervous going in and being on. I have those horrid headaches again too. And nothing makes them go away. Ive tried just about everything I can, legal.

Part of me has actually thought about just doing it, and hoping that it gets out of me before testing... but i also want to know that i can do it without. Because i know after tx, there is absolutely NO way you can have it. its too risky.

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geoffcamp
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« Reply #21 on: February 03, 2013, 06:35:14 PM »

Seems a lot of us share a question. Is there blood panels done on a regular basis by dialysis center or the transplant center that get blood from the dialysis center that include screening for illegal drugs?  Did I consent when I was accepted on the wait list to this testing?  I really do not remember anything about this being brought up when I was screened and accepted to the list. If they are testing me then I have never known and when I started on some hydro condone pain meds about a year ago thru a pain management referral via unit nephrologist. I would think they would at least investigate that sort of drug if found in labs, right?  I do not think they run a drug panel on me. I see the tubes and have learned over the years what the colors are for what tests and I've never seen anything but normal ESRD lab testing ie. phosphorous, BUN etc. but I could be wrong.
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Geoffrey Campbell
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« Reply #22 on: February 03, 2013, 07:09:38 PM »

Marijuana doesn't show up in blood, it shows up in urine, so I think a good bit of us are safe on that point.. *L*  What they test for in the urine (I forget what it's called) actually stays in your system and cause a trace positive up to 7 months after partaking.

I know way too much about this, don't I.. *L*
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« Reply #23 on: February 03, 2013, 07:13:52 PM »

THC Riki  ;)
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« Reply #24 on: February 03, 2013, 08:46:39 PM »

it doesnt show up in the blood at all?????????????????????????????
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