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    • #24779
      Colleen Steele
      Keymaster

      I learned something new this week – kidney disease an cause bone problems. It occurs when damaged kidneys and abnormal hormone levels cause calcium and phosphorus levels in a person’s blood to be out of balance.

      My son developed osteoporosis post-transplant as a side effect from immunosuppressants and a possibility that some minor deterioration had begun prior, when he had PH. At least once a year he has a bone density scan and each time there is evidence of progression. For a while it wasn’t bothering him but now he experiences arthritic type of pain, especially with change of weather and exercise beyond his normal routine.

      Now there is evidence that his kidney disease is adding to his bone problems. He has been warned that is a great risk for fractures and use caution when doing things. He is taking supplements but his doctor doesn’t want to place him on any treatments unless he starts experiencing fractures. Treating will be complicated because of medications he must take for transplant.

      Are you struggling with bone problems on multiple levels? Did you know that kidney disease can effect the bones? Share your experience.

    • #24796
      Jen Cueva
      Keymaster

      Hi @colleensteele, yes, the kidney issues can undoubtedly add to bone issues. I am sorry to hear that your son is having more bone issues. I hope and pray that he does not get any fractures but can see how the post-transplant medications and kidney disease can put him at a higher risk.

      I am unable to take extra calcium and phosphorus, well most vitamins and minerals because of my kidneys. I have had an issue with high phosphorous, but my calcium is usually OK. I am not sure how, as I do not eat a high calcium diet. I have yet to have a bone density. Last year my PCP said that my insurance will not cover it yet unless my B12 and several other factors were lower than they are.

      Does your son follow a diet for kidney disease, or is he still eating his diet as usual? I am hopeful that he can take the supplements. I am saddened with the pain that he has to deal with the pain.

    • #24899
      Jimi Mcintosh
      Participant

      Kidney’s have a big job in filtering the waste, capturing the nutrients, and sometimes eliminating things that benefits us. Constant balancing act. Bone loss and thinning is the big issue. I take supplements to replace and balance the calcium, phosphorus and potassium. Having to use parathyroid meds and gout meds on alternate
      days to control creative and bone loss

    • #24908
      Jen Cueva
      Keymaster

      Well said, @jimi. I, too, try to balance the issues from my kidneys with my CHF/PH, although I am unable to take supplements at this time. I try to eat a variety of food to help. Are you on a specific kidney diet?

      I have had problems with my parathyroid hormones and gout, too. My gout flare-ups have not been bad recently unless I eat shrimp. ( This is one of my favorites living on the Texas Gulf Coast).

      I have yet to have a bone density test but plan to approach my medical team again about this.

      I’m happy to hear that you’ve found a way to balance your issues with alternating meds. Which med are you taking for gout? Colchicine?

    • #24912
      Jimi Mcintosh
      Participant

      I take allopurinol, 150 mg down from 300mg / day. I took abdominal
      Injections for 2 yrs for bone density. Had to stop taking Metformin. A great day is the one whereas, I can eat anything and not take a pill for something.

    • #24919
      Colleen Steele
      Keymaster

      @jenc so far he doesn’t have any dietary restrictions. It’s just his water consumption that they want him to stay on top of. So far he’s been told to continue with his supplements. In fact, his kidney doctor just added another type of Vitamin D in addition to what he is already taking.


      @jimi
      so far my son is only taking supplements. His endocrinologist doesn’t want to place him on any medications unless he starts experiencing fractures because working those treatments into his transplant ones will be complicated.

      Thank you both for your input. I really appreciate it.

    • #24923
      Jimi Mcintosh
      Participant

      Your doctor is wise to try to resolve bone density with supplements and diet before using drugs, that may cause some serious side effects. Once started you have to finish the course. My daily injections were difficult because you alternated from side to side of stomach. It had to be taken at the same time everyday and I had headaches and bruising. D-3, b-12, naicin, fish oil, and iron worked. Calcium supplement was a no-no due to its effect on the kidneys

    • #24926
      Jen Cueva
      Keymaster

      @colleensteele, I’m grateful as I’m sure Cullen is too about not needing a kidney diet. I’m sure that keeping track of his water intake is enough. Is he pretty good with that, or is that something you have to remind him?

      It sounds like his medical team keeps on too oftgungs. I’m happy to hear that, and he can take supplements to see if that helps. I hope that the supplements will help him.

    • #24927
      Jen Cueva
      Keymaster

      Hi @jimi, I was on allopurinol several years ago. My doctors took me off of it after not much success. I do have colcyrs for flare-ups. But I don’t like to take it. I also cannot take calcium.

      I take B12 and Procrit injections at home. It isn’t my favorite, but I’ll do what it takes. So, I can understand.

      I am planning to followup about having a nice density scan once we are open back up some.

    • #24936
      Colleen Steele
      Keymaster

      @jimi I’m going to have to ask about the calcium because he has been on a horse pill sized supplement for a while now. His doctor goes over his meds with us during every appointment and has never addressed it. Thanks for the mention.

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