I’m an anomaly :-)

Stop laughing :-) We always knew I was a little different…now I know (at least in one area) by how much.

During day 1 of my transplant evaluation, Paula and I kept hearing that I was an anomaly. But *why* I was an anomaly…well, it seemed I just don’t fit into any of the standard categories.

  • The surgeon was a bit stunned when he asked how long I’d been sick, and I answered, “33 years”. It turns out that not many folks are sick this long without needing dialysis or a transplant. (What can I say…I’ve had an awesome nephrologist for the last 6 years :-). And I had an awesome nephrologist the first two years. The ones in the middle…well, most of them weren’t quite as awesome. I managed to keep going anyway :-).)
  • I’m going direct to transplant without going on dialysis. The latest figures I could find were for 2008, when 2.5% of all kidney recipients (out of more than 16,000) went direct to transplant. MGH performs between 80 and 100 transplants a year…which means that only 1 or 2 are direct to transplant. (I’ve asked for the exact count, but no one’s gotten back to me yet.)

This means that there are a couple of ramifications:

  • Medicare covers all End Stage Renal Disease (ESRD) patients. It pays for all costs related to dialysis and transplant. However, a patient can’t file the paperwork until either dialysis starts or the transplant has taken place. (Think of it as “making the commitment” ;-).) So by going direct to transplant, I’m going to come out of surgery, and then have to deal with the paperwork. (Yes, some things can be taken care of ahead of time, but not everything.)
  • While Medicare covers all costs for dialysis for as long as its needed, it only covers three years post-transplant. (This has to be one of the stupidest things I’ve ever heard.) After transplant, I’ll be required to take a long list of drugs. Daily. These drugs can cost as much as $4,000 a month for patients without insurance. (This makes the $1300 a month we currently pay for our health insurance look like a bargain, because it should only cost us around $200 a month.) Three years post-transplant, I have to go off Medicare until I’m old enough to go back on again, which means that we’ll be responsible for all drugs costs until I’m 65. (Yep, this means that Medicare will pay thousands so that I can get a new kidney, and then stop paying for the drugs necessary for me to keep it working. Dumb.) We laughed when the social worker told me “You’re really too young.” Haven’t heard that in awhile!
  • If the new kidney doesn’t start working right away (and sometimes it doesn’t), they typically put the patient on dialysis until it does start working. This isn’t a big deal when the patient has already been on dialysis, but it is for someone like me. It’s not that they can’t set up the fistula, they can…but it’s another step that they have to be ready for.

I’m also considered a bit of an anomaly because of my attitude. I’m not freaked out by this. My husband and my son aren’t freaked out by this. I think some of my friends are, but those who have known me for a long time all knew this was coming at some point. The point has arrived :-) (OK, to tell the truth, my mother is freaked out by this. But she’s my mom…it’s to be expected.)

During all the meetings on day 1, I think people were expecting someone who wasn’t calm, wasn’t joking, and frankly, didn’t know as much as I do. But the one thing I’ve done since I first got sick was to learn EVERYTHING I could. My very first nephrologist in Allentown, PA, made sure that I had all the information I wanted…what was involved in dialysis (at that time), what was involved in a transplant (at that time), what the various lab tests were for, and more. I’ve had a long time to prepare for this.

So when you ask how I am, don’t be surprised when I say “I’m good”, because I am. For the most part, I feel fine. I continue to work, to watch TV with my son and fight with him about doing homework, to shop for groceries, to make dinner, to do my part around the house. My travel is currently limited by budget, not by my health (although I’m sure that day will arrive).

To me, CKD is just part of who I am, and the transplant is the next step. I’m good with that :-)

5 Comments

  1. Hallo Char
    I’m so sorry to hear about this. I didn’t know about the CKD until now. You are awesome! Do you have a date for the transplant yet? I’m holding thumbs for you, as are so many people around the world.
    See you at the next tech comm conference that we both happen to make it to!
    All the very best, Sarah

  2. Hi, Sarah :-)

    Thanks!

    They won’t set a date until I’ve been approved by the Transplant Team, and I’m still undergoing tests. (I’ll be at the hospital for lab work, MRI, chest X-ray, etc. in August.) I’ll announce it when I’ve been approved (and introduce the team, too).

    Will you make it to WritersUA again next year? (We’re going to Memphis!)

    Char

  3. Hallo Char
    I’d love to make it to WritersUA in Memphis! But I want to attend STC Summit 2012 too, and I’m not sure I’ll be granted the budget for both! Are you going to STC Summit?
    Cheers, Sarah

  4. I’ve heard rumors that Big D is the same month as STC (it’s held in Dallas), so I think I might go there. I wasn’t able to get to Big D this year, unfortunately.

  5. [...] I mentioned in I’m an anomaly, one of the stupidest things that kidney transplant recipients have to deal with is the 36-month [...]

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