Transplant dialysis limbo questions

[Roseann]

Hi everyone. This is my first real post with questions and issues I have. I've been on dialysis since August and my kidneys were removed in November. I'm jumping through all the hoops to get approved for a transplant. I have several volunteer donors but this process is just so slow I want to scream. In the mean time I dialyze 3 times a week. My urea level is still on the high side and I have no appetite at all. I have extreme fluctuations in my blood pressure. High stroke range one day and somewhere below the floor the next. That can't be good for a body! Often I have severe pain in my chest and abdomen but my heart checks out just fine.

I smoke marijuana to help with nausea and pain. I just can't take narcotics. Does anyone have any experience with using pot while waiting for a transplant? Please, I don't want any moral judgements just medical or personal opinions on the efficacy of marijuana.

[kidney4traci]

I have read numerous times on this site where it automatically is a rejection for transplant lists if you smoke dope.  Ask your MD.  Even Dr. prescribed is off limits.  Also, it took me awhile to get my bp lowered, and now I rarely have to take bp meds.  So, just do your treatments, eat as much healthy food as possible.  Your body needs to gain back strength. and smoking isn't healthy.

[MandaMe1986]

I don't know about any of the transplant stuff.  It has been going pretty smothly for my father. The doctors are alredy talking about geting him out to the mayo clinic within the next month. So I am not sure. Sorry it is taking you so long. As for blood pressure, are you seeing any chang based on things you eat?  Mine was like that.  When I don't eat it drops really bad.  And if I eat even the slighest bit of sodium it ski rockets.  It may be the meds on your too. Sometimes you need to change them up a few times before it works itself out.

Just a random question here.  Dose pot help? And what dose it help with?

[RichardMEL]

Sorry to say but transplant evaluations and the like DO take time.. and then the donor testing process can also take a long time - up to six months. One of the reasons as much as anything else is to give the donor time for the idea of the process and what is truly involved to sink in rather than jumping in and 2 weeks later it's done. Plus all of the tests require time and that's something you just can't rush in terms of doing the tests, waiting for the results, discussing them, scheduling, etc etc.

I know it is horribly frustrating but it's something we all go through (well those deemed medically fit enough to even consider for transplant). If you are stable on dialysis that is a good thing (though the BP swings do seem a bit large). I don't know about the pot thing other than that I had always understood smoking of any sort was considered a real no-no for transplant, but I have since heard otherwise. Definitely discuss with your transplant co-ordinator and/or Neph.

[cheesefania]

I am in a similar predicament.  I have smoked marijuana for a long time, and I have become actively involved with the medical marijuana movement in my home state of Iowa.  I am not ashamed of my use, because I don't consider it morally wrong, so I was honest about it to my doctors, but they told me it was their policy that to be placed on the transplant list, I had to demonstrate six months of abstinence and go through a substance abuse treatment program.  Although I disagreed with their policy, I still complied with their rules and did the treatment program and quit using for six months.  After the six months was up, they placed me on the list, but they still wanted to monitor me for marijuana use.  I did a lot of research on the subject, and have found no direct evidence linking marijuana use to kidney or dialysis problems.  In fact, it helps with my appetite, and helps me feel better at times, and it can't be much worse than half the chemicals that are pumped into me on a regular basis, not to mention what is in all the processed food out there, but I digress.  All ranting aside, I purchased a vaporiser so I would not have to smoke the pot, thus eliminating much of the potential for harm to my lungs and throat.  Vaporisation heats the marijuana up to a hot enough temperature to extract the THC, without burning the plant material, and is the method many medical marijuana patients use, because it acts as fast as smoking without as many (or any, some say)health concerns.

So I guess my only advice would be to educate yourself about the subject as much as you can, and keep the fact that you use to yourself, if you haven't already disclosed it to your doctors, because it can make the transplant process that much slower and longer. 

[kellyt]

Look at statistics of smokers who receive transplants.  They are disturbing.  I would quit if I were you and if you are able.  The longevity rate is much lower in smokers.   Good Luck.

[Wallyz]

Yeah, the problem is that if you smoke, pot or tobacco, you will get sick more.  If you get sick a lot, you can't go on immune suppression and live.  If you can't go on immune suppression, you can't get  a transplant.

Them's the breaks, folks.  Transplant is an opportunity you don't have to take, not a right you deserve.

[kellyt]

Also, consider the "smokers cough".  That will not be pleasant following transplant.  I could barely clear my throat during that time.  It was extremely painful!  Thankfully, I was able to avoid sneezing as well.

Not to mention the dangers of going under anesthesia if you are a heavy smoker (don't know if you are or not).

[Chris]

Also, consider the "smokers cough".  That will not be pleasant following transplant.  I could barely clear my throat during that time.  It was extremely painful!  Thankfully, I was able to avoid sneezing as well.

Not to mention the dangers of going under anesthesia if you are a heavy smoker (don't know if you are or not).

Yeah the coughing part is bad and painful even with the pillow given to cough. Unfortunately I did sneeze due to something in the air and that hurt like a SOB, not to mention pullling a tube out.

As you may find out when you go to a different transplant center, there are different criteria that they accept patients to their list and most frown upon smoking and try to get people to stop before they are listed if they choose to do so, while waiting,  and then after. If you read most transplant books, they say to stay as far away from smokers as much as possible due to health risk. No idea about vaporizers though, but if they are taking blood test and that is found in your system, they do have the right to deny you and mark you as non complient.

Good Luck

[paris]

I have gone through the elvaluation process at three different centers.  Everyone asks "do you smoke, drink or do drugs?"  Then the social worker has her evaluation of you and you will be asked to go over your habits.   Just be prepared for their response.  The best way to get a trasnplant is to very compliant with their rules.   Good luck with everything.  Let us know how things go.

[kellyt]

I agree.  If you're not compliant, or if you don't plan on being compliant, your best option is to at least be honest.  I wish you the best of luck!