This topic contains 11 replies, has 4 voices, and was last updated by  Colleen Steele 1 month, 1 week ago.

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  • #17076
     Colleen Steele 
    Keymaster

    My son developed kidney disease post transplant caused by immunosuppressant drugs. The disease was possibly asymptomatic during his PH days stemming from those medications or later from heart failure. Kidney disease is a common issue for transplant patients but has anyone struggled with this as a PH patient?

  • #17087
     Jen Cueva 
    Participant

    Hi Colleen and Welcome again !

    I have had PH just over 14 years , about 5 years ago I developed kidney disease and I was told that it was due to the high levels of diuretics ( I was on 3 at that time) through the years to keep me out of heart failure. It’s kind of like a catch 22.

    How is your son now with the kidney disease ? ( BTW, it’s awesome he’s now 19! ) Is he always symptomatic? Mine goes from stage 3/4. I’m asymptomatic most days, thankfully but I did have some bad flare ups with Gout and itching as well as back pains from my kidney disease . Thankfully I’ve been able to cut out one diuretic and that’s helped some.

  • #17088
     Colleen Steele 
    Keymaster

    Thank you Jen for the warm welcome! My son was on a heavy load of diuretics too, especially in his last year with PH. He actually just had one added post transplant for high blood pressure. My thoughts are that it is possible that PH played a small part in the kidney disease.

    He is stage 3 and stable. He only becomes symptomatic when his creatinine levels climb and that is almost always because he hasn’t been drinking enough water. Blood pressure has been a concern but the diuretic in addition to 2 BP medications, seem to finally be making a difference. He is far from needing a kidney transplant but the reality is he probably will need one in the future because stopping the immunosuppressant’s is obviously not an option. Like you said, it’s a catch 22.

  • #17110
     Jimi Mcintosh 
    Participant

    Kidney disease, goes hand in hand with
    Diuretics and genetic kidney disease, add polycystic kidney disease and it becomes a tight rope. Make sure that any doctor you see understands that you require kidney sparing meds.

    Fluid retention becomes critical to prevent CHF, kidney and liver issues.
    I rely on my pharmacist and several medicine web sites, to research interactions

    • #17115
       Colleen Steele 
      Keymaster

      Thank you Jimi, his kidney disease is well managed at the moment. His transplant and kidney doctors communicate frequently to make sure they are both on the same page, especially in regard to the medications. Again, it’s catch 22 as Jen mentioned. His doctor explained that if he receives a kidney transplant he will be taking the same medication he is on now that over time can damage the kidneys.

      • #17155
         Brittany Foster 
        Keymaster

        Colleen
        It’s so hard when medications help so much but used long term can cause some damaging effects. I’m glad that your son’s teams work so well together. That’s so important! It must make you feel somewhat relieved when the doctors are also advocating for him too. I know it’s quite a lot of work for my mom and I to keep up and make sure everyone is on the same page (especially with so many different specialties)

    • #17136
       Jen Cueva 
      Participant

      Colleen, glad his kidney disease is stable. It’s definitely a catch 22. That is tough I’m sure with all his post transplant meds, too.

      It sure is important Jimi that all of our doctors are aware of all of our meds as well as our illnesses. It can definitely become overwhelming to say the least and the Pharmacist is a great help with medication interactions. I’ve made friends with my local Pharmacist and Specialty Pharmacy.

    • #17154
       Brittany Foster 
      Keymaster

      Jimi,
      Thank you so much for the response. You are certainly taking good action by talking with your pharmacist and doing your own research on what works and doesn’t and what types of medications interact with one another ! Sometimes our doctors aren’t the ones that pick up on these interactions. I have had some strange side effects that were related to medications that were “rare complications ” but a pharmacist and my own research helped me to figure this out!

  • #17163
     Colleen Steele 
    Keymaster

    I found an article that discusses kidney dysfunction in PH patients. It’s a bit heavy but if you skim through there are several paragraphs that stand out and are informative. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5448543/

    • #17166
       Jen Cueva 
      Participant

      Thanks Colleen, it was an interesting read over ( skimming ) but it did offer some informative data. I think overall, the most important is that while there are some of us PH patients who are diagnosed with Kidney disease , they both can be managed.

      I think the fact that my blood pressure was already on the lower side prior to PH and PH meds, this is a protective action in my case . I also have not had issues with Diabetes or sugar issues; these are two of the ways in which the kidney doctors try to manage kidney disease. I do think watching our food intake, such as sodium, protein, and sugar is one simple ( well not so simple to choose some days, lol ) way we can work to be proactive to manage both . Lifestyles and so many things we do or do not do affects so many things in our bodies. Isn’t it amazing how complex yet interesting our bodies are ? Am I the only one amazed and who tries to read more to learn more about this amazing machine?

      • #17167
         Colleen Steele 
        Keymaster

        Thank you Jen! You make an important point that kidney disease can be managed in PH patients and it’s possible not to develop this additional health concern. My son fought PH for 8 years without any kidney issues. As far as we know the injury started after transplant and slowly developed into kidney disease most likely from the immunosuppressant’s. I was just curious if any of our members have had to deal with kidney disease along with their pulmonary hypertension and if the PH had contributed to their kidney problems.

        Our bodies certainly are amazing! Sometimes the learning part of a disease and other health issues can distract from the worry. When I am researching it put’s my mind in a pro-active mode. Diet does play a huge part in keeping us well, and I know the balance isn’t easy. Luckily my son has never dealt with diabetes or sugar issues either but he has always had to be careful of his sodium intake. He loves salt so that has not been easy for him.

  • #17164
     Colleen Steele 
    Keymaster

    Jimi and Jen, those are very important points you made regarding drug interactions and utilizing pharmacists to help safeguard against it. Pharmacists are an important source in self-advocating. As Brittany mentioned, doctors don’t always pick up on drug interactions or are familiar with all the symptoms a medication can trigger. I firmly believe that health care requires a team effort and any good doctor will agree.

    Speaking of good doctors, my son had a nephrology appointment today. He is still having high blood pressure issues so, his diuretic is being increased. There was communication between his doctors and research before prescribing a diuretic and blood pressure medications. Brittany, I do feel very fortunate that my son has such thorough and caring doctors. They aren’t all in the same state either, yet they communicate well with each other to make certain their mutual patient receives the best care.

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