Close Mobile Navigation

Announcement

Announcement Module
Collapse
No announcement yet.

Shock to the system.

Page Title Module
Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Shock to the system.

    Lots of brave people in this forum. I not being one of them.
    Short back story, male in my 50s. About 15 years I was told my gfr wasnít so great in 70s but I didnít think much of it. Over the years I neglected to address it while it would bounce low in the 40s but then back up in the 60s. Having no symptoms besides losing blood protein in urine I looked the other way.
    Now itís free falling from 65 in Dec to 29 last week. No bounce back. It seems to have coincided with me losing weight. I now have all the symptoms RLS insomnia kidney pain etc. I have a Dr appt in a few days.
    Iím really alone in this and just canít see me being on dialysis. I know I canít wish it away but I think people who can go through it all have a lot to live for so itís worth the fight. Problem should be simple but I am as terrified of dying as I am of a life of dialysis.
    Lots of anxiety/panic. Hey I know Iím not brave.

  • #2
    Lettingo -
    This is the first time i have responded to a post on this site. I happened to be checking my labs and saw your heading. I'm a tad older than you, but my diagnosis was rather sudden; no symptoms of any kind for years, when i finally went for a checkup my BP was through the roof, and my GFR was in the basement. The first doctor who saw me said i should be on dialysis that day. Talk about a shock to the system! Fortunately, I was assigned to a nephrologist who said, "see me every month and I'll let you know when you're ready for dialysis." It was 20 months until she decided it was time. When i first found out, i sat around for a couple of weeks, thinking it was a mistake, it was someone else's records; then i owned up to it and decided to do what i could to stay as healthy as i can, as long as i can. Right before i started HD, i spoke with an old friend who had been through a bout with cancer, followed by a heart attack. His message: "You'll do fine on dialysis." Sounds simple, right, but i took it to heart, and after 5 years on, I'm doing fine. My nephrologist was very open with me about what would happen as things progressed (and i asked her to tell me everything). When i started at the center, i told the techs and nurses how i got there, and i asked them a lot of questions about how the machine worked, what i was feeling during dialysis, and they told me everything i wanted to know. i realize not all patients want the details, i chose to learn as much as possible. I got to the stage where i could begin to sense when my BP was dropping (a common occurrence) or when i started to cramp (also common). And i learned how to deal with it, or have the staff deal with it, before it got worse. As a result, knowing what could happen, i stopped anticipating negative conditions. I read an article one time from another patient who said she thinks of dialysis as her "part-time job." When i talk to friends who know my situation, i refer to it as "Pilates Class."

    I'm starting to ramble here, so let me see if i can summarize - if you're up to it, ask a lot of questions and learn as much as you can. As for a "life of dialysis" - as soon as you get your care plan established, get on the donor list. Wait times vary with states and regions and even transplant centers, so i would encourage you not to spend much time counting days or years, but work to manage your condition. Sure, there may be some things that won't be as easy to do, and there are some dietary adjustments, but its also accurate to say, you can still do a lot of things you always did.

    You were brave enough to share your story. I hope you find you're braver than you let on.

    Comment


    • #3
      Lettingo

      I will understand your frustration as I went from 65 to 35 in 6 years with the recent diagnosis as complete surprise. Stay positive and take it one day at a time. I am struggling to lose weight slowly while adhering to the dietary recommendations.

      Comment


      • #4
        i too share the challenge and fear...one kidney gfr 43 to 29 in a 1.5 years. please take heart in the fact that you can still do much with diet and exercise...working in what you can do, rather than fear about what is to come. your rapid gfr down could be due to fluid loss?..where is creatinine level? Magnesium deficiency can also add to rls...and sleep problems. Best to you! ml

        Comment


        • #5
          Originally posted by Lettingo View Post
          Lots of brave people in this forum. I not being one of them.
          Short back story, male in my 50s. About 15 years I was told my gfr wasn’t so great in 70s but I didn’t think much of it. Over the years I neglected to address it while it would bounce low in the 40s but then back up in the 60s. Having no symptoms besides losing blood protein in urine I looked the other way.
          Now it’s free falling from 65 in Dec to 29 last week. No bounce back. It seems to have coincided with me losing weight. I now have all the symptoms RLS insomnia kidney pain etc. I have a Dr appt in a few days.
          I’m really alone in this and just can’t see me being on dialysis. I know I can’t wish it away but I think people who can go through it all have a lot to live for so it’s worth the fight. Problem should be simple but I am as terrified of dying as I am of a life of dialysis.
          Lots of anxiety/panic. Hey I know I’m not brave.

          Diet is #1
          Exercise is #2
          What are you currently doing for diet and exercise?

          Also, after you talk to your doctor, let us know what he says and we can all help you.

          I follow a Paleo diet (www.experiencepaleo.com) and exercise 3-4 days per week.

          Comment

          Back to Top
          Working...
          X