This topic contains 3 replies, has 2 voices, and was last updated by  Brittany Foster 1 month, 3 weeks ago.

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  • #18728
     Colleen Steele 
    Keymaster

    We have touched on this topic in another sub-forum but to make it easier to locate the discussion I thought we would address it here as well.

    Have you been diagnosed with kidney disease and if so, did you develop it before or after your PH diagnosis? What are the challenges of battling these two diseases together?

    My son was diagnosed, post-transplant, with kidney injury that eventually progressed into kidney disease. It was caused by immunosuppressants. I also believe that his kidney’s were greatly effected when he was in heart failure from PH and all the diuretics probably took it’s toll as well.

    Here is a column from PH News that address kidney disease and PH.

    Kidney Disease Patients with Pulmonary Hypertension Face Poorer Outcomes, Study Finds

  • #18743
     Brittany Foster 
    Keymaster

    Good topic Colleen! I actually had kidney reflux pretty bad as a child particularly on my left side. There is one kidney that I know is more swollen than the other on scans and I also still get some reflux from time to time to get UTI infections often and see a urogynecologist for this. It makes me bladder go into spasms every few months and I get bladder injections that are a combination of pain medication like lidocaine, a steroid into the bladder, and some type of relaxant for the bladder walls to prevent a flare up. Before I got these injections I had to go to the hospital once every few months to drain out my bladder and give it a “rest” with a foley catheter in place for like 5 days. That was horrific. Kidney pain is terrible and the back pain can be so hard to get under control. This was something that I was born with. I have a hereditary form of sacral agenesis so my bladder, bowels, kindeys, lower back are all formed differently.

  • #18751
     Colleen Steele 
    Keymaster

    Geez Brittany, my son went to a heart camp once and during introductions I remember a counselor commenting on how he really won the heart condition lottery. Well, you won the lottery of lottery’s! The more I learn about all the health challenges that you have faith the more I admire you and your ability to fight, advocate and still enjoy life.

    Luckily my son hasn’t experienced pain with his disease, at least not yet. His main symptoms his high blood pressure and high creatinine levels. When both are acting up then he gets increased migraines.

    Bladder injections sounds painful. What was it like going through that?

    • #18759
       Brittany Foster 
      Keymaster

      I was catheterized so much as a child just to be able to go to the bathroom sometimes that they end up using a really tiny catheter because anatomically my urethra is pretty much toddler size. Going to the adult hospitals I usually have to advocate for the smallest size or for them to get a small size from the children’s hospital and they are good at listening to my request. But having the foley in wasn’t fun. It’s not something that can be easily hidden and it is quite a nuisance. Unfortunately there was a time in my life where I just “got used to it” and got used to going to the hospital to get it put in because my bladder was filled up about 4x what it should be. The installations just feel like a pinch from the catheter and they do a pretty good job at numbing the area. the NP’s who do it know me and know my history so they are really good with me. The first few times I was pretty afraid of it so they did it under a conscious sedation in the OR, but then I just “toughed it out” . There are some things we just unfortunately get accustomed to and this was always one of mine that I learned to just roll with !

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