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    • #27117
      Mark Koziol
      Participant

      A member of our forum recently sent me an article I thought would be interesting for transplant recipients and patients who may be considering a transplant in the future. The report is titled “Weaning Transplant Recipients from Immunosuppressive Drugs.” The article is from the UPMC Thomas E. Starlz Transplantation Institute.

      As a transplant recipient, I am fortunate to not have to take an enormous amount of anti-rejection medications. I take tacrolimus and only take .5 milligrams every other day. My dosage is low compared to other patients. I also take prednisone, Bactrim, and azithromycin. These medications contribute to my wellbeing and protect me from pneumonia and chronic rejection. The medication has unfortunately affected my kidneys and bone density. I take other drugs and supplements to balance my electrolytes and blood pressure. A relief from taking the medicines mentioned would be beneficial to my kidneys. I currently have stage 3 chronic kidney disease.

      The article cites, “a new technique is being developed at the institute which involves carefully weaning patients from immunosuppressants.” The process is not yet complete, but the researchers feel they are close to having this process come to fruition. The study further explains the process of infusing the patients with anti-rejection medicine at the time of the transplant. 

      If the drug weaning process came to be successful, would it change your mind if you are contemplating a transplant? 

    • #29920
      Ronald Cole
      Participant

      .ark thanks for sharing.  I am in the pre transplant work up. Did you have any of the problems you mentioned pre transplant,  or did develop after?

      Ron

      • #31327
        David Ota
        Participant

        Hi Ron

        I did not see this thread.  How did your work up go?  The post transplant side effects of the drugs can be numerous and serious.  Pre Transplant I had bone density issues, Post Transplant (6 years post) I still have bone density issues, but they are controlled with drugs and exercise.  The new problems are: skin cancer, high blood pressure, thinning skin, and an upset stomach.  My memory is shot, and my hands shake.  I am completely out of shape, but that may be from being a slug.

        • #31513
          Colin O Driscoll
          Participant

          I have had similar problems to David’s with side effects from immunosuppressants since transplantation, which was around 6 months ago. Health providers try to gradually reduce the dosage of some drugs, but that has not gone very far with me yet. Any research on reducing or eliminating these drugs would be very welcome.

    • #31319
      Diane B
      Participant

      Do most transplant patients end up with other organ failure or cancer from all of the drugs?

      • #31325
        Colin O Driscoll
        Participant

        Cancer is quite common, due to the immunosuppressants. Fortunately, most of them can be treated if detected early enough. This is why regular follow-up is crucial, as is prevention, such as taking precautions against sunburn.

        Chronic rejection is a common problem later on. There are some drugs that will slow it down

      • #31341
        Christie Patient
        Moderator

        Hi Diane,
        I am not sure what the statistics are on comorbidities from transplant. I do know that skin cancers are quite common, but usually an easy fix (removal of the spot with no additional treatment necessary). Other cancers are more likely than in an immunocompetent person, but as Colin said, that is why there is so much surveillance required post transplant. Compliance is part of the deal when you get on the list, and as tedious as it can be to have multiple visits/scans every year, or six months, it’s worth it to detect and treat anything out of the ordinary.

        As for organ failure, I know it’s possible, but I don’t think it’s too commmon. Kidneys and liver tend to be the most at-risk organs just due to the amount of medication that they need to process. My mom had problems with her kidneys briefly after her transplant. The issues only lasted about a month, and with adjustments and recovery, she now has no problems or lasting damage.

        Rejection does not happen to everyone. There are two forms: acute, or chronic. Many people live long lives without ever experiencing either. Some people have a bout of acute rejection, but with medication adjustments or breathing treatments, recover and never have it again.

        Each persons’ journey is sooo different with transplant, it’s hard to predict how anyone will fare. Just do your best to stay in shape, eat healthy, and exercise as much as you can tolerate if you are considering transplant.

    • #31328
      Bob Rawlins
      Participant

      It was one of my major concerns before I decided to have a

      double  Lung Transplant.

      I concluded that it was better than the alternative. Fibrosis was not going away and it’s not fixable at this time.

      There are lots of studies going on about that but it wasn’t going to happen before my chronic lung disease would take my life without a transplant. I am so glad I did. Yes, the meds are challenging but LT teams have progressed so quickly over the years with Lung transplants and being able to handle most challenges and a better quality of life. This will give me an extended life, God willing,

      Everyone has to decide, but I wouldn’t hesitate if all the signs are telling you to transplant, science and medicine have come so far.

       

       

    • #31512
      Kris manian
      Participant

      Excellent information. Thanks for sharing. I have advanced IPF and I am considering transplantation.

      I am going through the qualification test phase. If some one can shed light on those tests, how to prepare and look for will be good.

      Also, what blood group that each of you had and how did that impact the wait for suitable lung donors?

      thanks for sharing?
      God bless?

      • #31515
        Colin O Driscoll
        Participant

        Hi Kris,

        I can only tell you about the prep here in Belgium, which are similar to elsewhere in Europe. I imagine that it doesn’t differ too much from the US.

        Health screening
        There are a whole series of tests to ensure that you are reasonably healthy, apart from your lungs, and that you don’t have pre-existent conditions that could flare up due to immunosuppression. I had blood tests to look at liver and kidney function, prostate ultrasound, colonoscopy, gastroscopy for esophagus, stomach and small intestine, examination of the carotid arteries and the coronary arteries to look for sclerosis and of course the usual bronchoscopy exams. This was also done one test after another because my transplant was done as an emergency after an acute exacerbation.

        Tissue Typing

        Beyond blood tests, there was also tissue typing. I don’t know the details. The time to find a match depends on how common a blood type you have. I am O positive, which fortunately for me is quite common here.

        Body weight and fitness

        My BMI had to be below 30. The hospital helped with dieting. They also have a fitness program to get you as fit as possible before the operation, with follow up afterwards.

         

        I hope that helps, and good luck with whatever you decide to do.

        Colin

    • #31519
      Kris manian
      Participant

      Thanks Colin, that was very helpful.

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