Stayin’ alive

A kidney dialysis/transplant diary

Wow and whoa

My phosphorus is high and that’s not a good thing. My level is about twice normal at this time. Functioning kidneys play a most important role in eliminating excess phosphorus. Non-functioning kidneys — mine — play no role. You can read some of the particulars here on the National Kidney Foundation site.

There are medications called binders that help in the elimination of excess phosphorus by binding in the colon, but because they are available doesn’t always mean they are practical for the average patient. I just got a call from my pharmacy saying the latest drug prescribed for me, Fosrenol, is not in the formulary for my drug plan and is not covered by preauthorization. It’s cost: $600. “Is that for 90 days,” I asked. “No, that’s for a 30 day supply,” she answered.

Back to the drawing board … or should I say prescription pad.

And back to revising the diet. Got to cut out more cheese, dairy products, nuts, whole grains, chocolate, dark colas … and the list goes on. Believe me, I already cut back on many of those things when I learned I had kidney failure.

Kidney disease sucks. A big one

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April 28, 2009 - Posted by | kidney

5 Comments »

  1. Hi Kathy,

    $600 for 30 is just crazy, isn’t it?!! We have had good luck in calling a manufacturer to get a drug from them at little cost for our son. Merck was very good about this. It doesn’t hurt to call the manufacturer of this new drug and ask.

    Good luck to you. Your book sounds very interesting!

    Comment by Angela | April 29, 2009 | Reply

  2. I’m sorry but I believe you don’t understand exactly how dialysis works and what it does. It would behoove you to go the the Home Dialysis Central website and watch the two webinars giver by Dr. John Agar on How Dialysis Works. It’s essential watching for all dialyzors.

    Dialysis does remove phosphorus, but it has to be longer treatments. You’ll learn that it doesn’t take as much time to remover urea, a small solute. But it takes longer to remove middle and larger sized molecules like phosphorus and Beta2microlobulin.

    Also one of the reasons why many put too much fluid on between treatments, interdialytic fluid, is because they take off so much fluid so quickly in-center that they add sodium to the dialysate; it’s called sodium modelling. The purpose of the sodium is to keep blood pressure up and stop cramping. One usually doesn’t get the cramping with short daily home dialysis and definitely not nocturnal. Imagine the amount of fluid you gain in the two days between the weekday treatments and the three dys over the weekend. Imagine cutting that in half because you do dialysis six days/week. You should be able to see thatyour fluid intake is half of what you’re doing now. That’s what home dialysis does for you.

    A member of our NxStageUsers group also has a prothetic like you. She would be a good person for you to talk to. I’d be happy yo put you in touch with her.

    Also, when someone has CKD5 as us, diuretics are totally out of the question. They will eventually do harm.

    Binders also have nothing to do with the colon. A binder, sometimes calcium, binds the phosphorus to it and eliminates it through your system.

    Comment by Rich Berkowitz | April 29, 2009 | Reply

  3. Angela–
    Thanks for the encouragement. I’ve been trying to deciide if I want to call the manufacturer.

    Rich —
    You sound very knowledgeable about dialysis. I know Bill Peckham is always singing the praises of home dialysis. I obviously need to inform myself.

    Comment by iowakitkat | April 29, 2009 | Reply

    • Kathy, I’m sorry it’s taken so long to get back to you. I went to DC to advocate for better dialysis and came back with a few problems of my own. We just started a NxStageUsers.com website. We have the beginnings of a good forum there. You can also get a mentor if you desire.

      Bill’s a good friend of mine. We’ll be going on the We’re Taking Home Dialysis to Sea Cruise next January. Although he lives in Seattle, his mothe lives about 5 minutes from me in the northern suburbs of Chicago. Bill is right, home dialysis is where it is. I know without it, I wouldn’t have lived so long. I actually had a heart attack driving home from in-center dialysis about 1 1/2 years after I started. My heart is actually getting stronger now. There’s lots of good people who will help if you’re interested in doing dialysis the home way. Visit out website.

      Comment by Rich Berkowitz | May 18, 2009 | Reply

  4. Kathy,

    I have been reading your blog because my husband, a type II diabetic, started dialysis in early 2008. He has his treatments at UIHC in Iowa City. He was prescribed ‘Tums’ (over the counter antacid tablets) as a phospate binder, and they have worked well. He was instructed to take 1 or 2 750 mg tablets with meals. The only problem he ever encountered was some constipation, but was able to cut back on the tabs a little and that problem went away. I apologize if you already tried this remedy – just thought it might be a less costly alternative. Good Luck!

    Comment by JUNE | June 13, 2009 | Reply


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