This topic contains 6 replies, has 4 voices, and was last updated by  Charlene Marshall 6 months, 2 weeks ago.

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  • #16353
     Charlene Marshall 
    Keymaster

    This forum tends to be a wealth of information about idiopathic pulmonary fibrosis (IPF) and the pesky symptoms that come as a result of living with this life-threatening illness. So naturally, I am turning to those utilizing this platform to ask: has anyone had troubles with their kidneys throughout their journey with IPF/PF? 

    This past Monday I had a standard follow-up appointment with my doctor who discovered a minor fever. After a ton of questions, all of which I answered without trouble, he asked to take a few samples; blood, urine…fun stuff like that without getting too detailed. I am obviously used to this by now so it was fine by me. Apparently those samples indicated an infection, which my doctor seems to think is in my kidneys per a physical examination. I am now on antibiotics and was stunned with this news. I’ve not had trouble with my kidneys, nor did I have any indication that I might be dealing with a kidney infection especially because I thought they were painful, and I have no pain in my abdomen.

    After asking the doctor what causes these, his answer was very vague as there can be so many causes. That said, with a quick review of my medication list for IPF and other issues; he suspects it is simply from my kidneys trying to filter “so many” medications. Compared to others, I don’t believe I am on an excessive amount of medications but apparently my kidneys tell a different story. I am a bit stumped, because the doctor also couldn’t identify which drug I should be taken off of to help my kidneys recover, and if it is a collective problem (due to all the meds combined) then I don’t know what a solution would be.

    Have any of you been told something similar by your doctor? 

    Were you treated with antibiotics and then just monitored for repeat issues going forward?

  • #16371
     Steve Dragoo 
    Participant

    Hi Charlene – are you kid-en-(m)y? Yep, I have a fluid-filled lesion on each kidney.  Wondering if class IV laser will work for it too? So far no noticeable pain or medications necessary but I am starting omega 3 and niacin soon in addition to the other stuff I take.  Those don’t necessarily help the kidneys though. – Steve

    • #16448
       Sandra Vanzyl 
      Participant

      Hi Charlene, new kidney issues….forgive me for being so blunt but I sure wish you could meet with the transplant doctors here at TGH….if this new kidney infection is caused by your medications for IPF I honestly think this team would be much more knowledgeable in this ….not that this has happened to me (yet)..but the transplant patients can have so many issues with kidney, and other medical issues and they seem to be able to adjust patients meds to make them better.    Just a thought, my ILD Doctor in Ottawa has moved to California to continue her practice and join her husband who has been there for 3 yrs.  I’m so thankful that I met her when I did, she was beyond amazing and is the one who pushed for transplant .  I hold her in high regard as well as how empathetic she was…..

      cheers

      Sandy

      • #16469
         Charlene Marshall 
        Keymaster

        Hi Sandy,

        Oh, I am so happy to hear from you! I was worried about you, and wondering how your move to Toronto went. How has the evaluation and listing been going for you so far? The team at TGH is amazing, I’ve heard lots of great things. Hey, did you get my direct message on the forums? Check it out, a neat opportunity for us and I’d love to hear if you’re interested. Curious to hear your thoughts and get a bit of an update on how you’re doing.

        So nice to hear from you!
        Charlene.

  • #16379
     Charlene Marshall 
    Keymaster

    Hi Steve,

    Your reply made me chuckle, thanks for that as I had a bit of a tough day with what-might-be a sinus infection starting. One side of my nose seems plugged and connected to a tender throat. No good, so I am slowly trying to nurse that back to health! Did your doctors ever say what caused the fluid-filled lesion? I’ve not heard of that before, although I am learning just how “fragile” our kidneys are when it comes to all the medications we can be on. Goodluck with your continued investigations into the laser therapy, sure sounds promising doesn’t it? Take care!

    Charlene.

  • #16396
     Sheila Blanchard 
    Participant

    Hi Charlene I too have Kidney problems which I have believed came from my Diabetes.right now I am controlling it by keeping my blood sugar at reasonable levels.keep warm

  • #16441
     Charlene Marshall 
    Keymaster

    Hi Sheila,

    Thanks so much for your reply to this topic, although so sorry to hear you have troubles with your kidneys too. How did it start? Is it a function issue for you? It seems so odd that my doctor is investigating this because I always thought trouble with your kidneys was indicated by pain and I certainly don’t have any. Glad you’re able to manage your diabetes and keep the blood sugar at a reasonable level. I know that is so important in disease management. Do you think the kidney trouble came from filtering the medications associated with the diabetes? I’d be curious to hear.

    Hope you’re feeling a little bit better with the “warmer” temps and have been able to get outside even for a little bit.

    Take care,
    Charlene.

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