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    • #23532
      Jen Cueva
      Moderator

      March is National Kidney Month. I have developed kidney disease along with my PH. Managing the two can be challenging at times. I wrote my column this week about my experience with kidney disease as it relates to my PH. Take a read and be sure that you are protecting your kidneys.

      Have y’all experienced any issues with your kidneys related to PH and/or medications? If so, please share your comments below.

    • #23551
      Brittany Foster
      Keymaster

      @jenc Hey Jen, I actually was born with a condition (currarino syndrome) and it is a form of sacral agenesis. In this defect there’s also a lot of kidney issues that can go along with it. I remember having many kidney and bladder tests done and that awful VCUG study with the catheter and small camera on the end of it. That was one of the worst things I remember going through as a kid. But anyways, I have been dealing with kidney reflux for awhile. It causes back spasms sometimes, bladder spasms, and used to require a lot of catheterizations and placement of a foley cath. Luckily that has gone away a little (knock on wood). That, and a few kidney cysts that are being monitored from time to time.

    • #23569
      Jen Cueva
      Moderator

      I am sorry to hear this, Brittany. Kidney issues, including spasms and cysts, can be excruciating. Not to mention, catheters! My heart and bladder ache for you.

      On a positive note, I’m happy to hear that you’re not experiencing these issues as often as of lately.

    • #23574
      Tricia stagner
      Participant

      Along with my PH I also have heart disease (open heart surgery 9/11/2008 to replace mitral valve with a mechanical valve, I had to get a pacemaker 8/12/2012to keep my heart pumping and they sll of this developed stage 3kidney failure! But I am happy to say I am a moderate stage 3 and it has stayed stable now for 3 years! My doctors are so happy and so am I!
      I take meds for everything except my kidneys!!

    • #23601
      Brittany Foster
      Keymaster

      @pebbles I am so sorry that you have so many co-existing conditions on top of the PH but I am glad to hear that you are being managed well. Do all of your doctors coordinate well together and communicate well? I think that is always half the battle when so much is going on. They really need to all be on the same page or else it begins to feel overwhelming and confusing when hearing too much input!

    • #23642
      Jen Cueva
      Moderator

      Hi @pebbles, it sounds like you have a full plate. I agree with Brittany; it is often challenging to manage PH along with coexisting conditions. I am grateful to hear that your doctors have kept your kidney disease stable for some time. That is a huge positive. Great job!

      As Brittany mentions, when dealing with multiple doctors, it is essential your doctors must stay on the same page. I had issues with this once during a hospital visit. This was related to my kidneys. The kidney doctor and my PH doctor did not agree on the plan. I actually spoke up and told them that we need to all be on the same page. That helped, but the first day was frustrating.

    • #23647
      Brittany Foster
      Keymaster

      @jenc I have been in that situation more times than I would like to count. For me, it is even more frustrating when I am the middle man between doctors. One will call me and I will say “okay I will let _____ doctor know” and then they will give me a message to give back and I call the other again saying “okay here is what they said ….” JUST TALK TO EACH OTHER DARN!!!! lol . end rant ! hahahaha

    • #23649
      Jen Cueva
      Moderator

      @brittany-foster, exactly! I think at times, why do I need y’all again? Hehe
      Just kidding as I know that I need them all, but it certainly can become exhausting when you are the middle man. You are certainly not alone in this rant!

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