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  • Does anybody take Cannibidiol (CBD) for their Endocannabinol System (ECS)?  We have these receptors and they are looking for CBD for a balance system.

  • Hi Everyone , I am almost 16 months after my kidney transplant. From  Ilast 6 months have started getting a lot of boils on my skin.My nephro told me these are because of medicine Mycommune (Prograf) that I take daily. If anyone has faced a similar issue kindly suggest how can these be reduced, because I get these too often and are very painful.

    http://skin.My/
    • Hello Akriti

      I had same issues with my skin and checked with dermatologist. they gave oitment which fixed thne problem but that is not permamnent solution. I still use that cream whenever I had new rashes. 

       

      • Thanks I too have an ointment for boils,but it takes the whole cycle of boil healing even with ointment, around 3 weeks for each boil ,and I generally get 2-3 boils at once.Tell me if these occur more often if less time has elapsed post transplant like I am still within 2 yrs

        • I am not having this issue anymore after 7 year of transplant but it was very often till 5 year. Another thing is that I am on very low prograf dose and switching to Belatacept. May be I will stop taking prograf after 1 month. 

  • Hi Mo. it sounds like you are on prednisone! I too gained weight...probably through a combination of eating more and exercising less. Weight Watchers was my answer. I was on an island in Maine so I downloaded the app and just started.  I also worked my way up to walking 5 miles a day, every day.  It worked for me and I was really able to stick to their free form program!  Good luck.  No magic solution!

     

     

  • HELLO EVERYONE QUESTION.. I'M A YEAR POST TRANSPLANT AND I CAN'T SEEM TO SHAKE OFF THE WEIGHT I'VE GAINED (ALMOST 50LBS) I EXERCISE AND EAT (MOSTLY) THE RIGHT FOODS.. IT LOOKS AS THOUGH I'M 5 MONTHS PREGNANT AND SOMETIMES I GET DISCOURAGED FROM EXERCISING WHEN I SEE NOTHING HAPPENING WITH THE WEIGHT.. IM ONLY ON 5MG OF PREDNISONE. IDK MAYBE THE MED JUST DON'T LIKE MY BODY BUT SOME ADVICE ON WHAT I CAN DO IS GREATLY APPRECIATED

    • Hi Tomt,

      You are still in the "break-in" period, when drug doses are high and your body is getting used to it's  new visitor. It can take a while (up to a year for some,) until you finally reach a stride and feel stronger. The first few months are when adjustments to meds and residual issues are dealt with. A good rule to follow is if the Tx team is not worried,  neither should you.

      It sounds like you are already doing what you are supposed to be doing, as difficult as it is, leave the worrying to the team. Stress is a killer, always! Try to concentrate only on aspects of Tx life that you have control over (hydration, meds, diet, rest...) All else is the job for the team. I do hope and pray your numbers even out soon, so you can begin to enjoy this second chance at life. BTW...receiving a Tx is so much fun, I did it twice! 😉😉

    • Hi TomT, I'm 55 and had my transplant from a living donor via the Kidney Exchange in August 2018. My father had his kidney transplant from a cadaver when he was 70, and had sepsis shortly after transplant. He's doing well now at 79. We haven't had your experience but sure hope you are still doing well. Assuming you are going to weekly or bi-weekly follow-ups at your transplant center, what are they saying now? Is your creatin still high?  Good thoughts to you. Gary

  • Hi all I am Patty stage 4 ckd polycystic kidney

    My neph submitted the paperwork in August when my gfr was ranging from 18 to 20 percent to the transplant center so I can be evaluated to see if I can get on the transplant list

     

    i am not on dialysis yet. I was very sick and in hospital in October and had to have home nurse visits until middle of November, the doctors said I was a mystery

    I had pancreastitis with lipase level over 100,000 but I had no sign to go with it . I also

    has a blood infection and pneumonia was pretty sick.

    i hope them not know why the lipase level got that high won't hinder my chances of getting on the list. My gastro doctor will run endo ultra sound next year he wanted me to be fully recovered of what I went through.

    my brother had a kidney transplant seven year ago in New Mexico he said they made him get his teeth fixed and he had to get his gallbladder out cause it had stones which he said he never understood why he had to get it out it never cause problems I said probably a precaution so it would not cause problems

     

    what were you told you had to get fix before you could get on the list?

     

    i go for my evaluation this Thursday they said we will be there most of the day they will do labs ct echo  know my doctor always tell me don't let them do contrast ct cause it to hard on kidney but what if they say they need to do I do it. Can anyone recall what they did on there evaluation and after all test are done and if you past them how long does it take to get on the waiting list

    i probably ask to many questions and probably will find answer Thursday but I like to hear other experience I am aware each of us are differnt so differnt things for each of us

     

    i hope I did not ramble and made sense I have had two brain surgies aneurysm from having polycystic kidney disease I have some cognitive problems so hope y'all can make sense of my post thank you

    patty

     

     

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