Kidney Mama

For anyone considering being a living kidney donor, check out this article on how to manage your life afterward. I learned that a no-carb, protein diet is bad. Not that I was considering one.

And it also includes a photo that shows the scars. They fade a lot though.

The Ventura Star did a very nice package on the absolute outrage that is Medicare funding for kidney patients.

Here’s how Medicare works. You can live on dialysis, which will tear down your health and for most people leave you too exhausted to do much of anything; Medicare will pay $71,000 a year for that, no problem. You can get a kidney transplant for about $100,000, and Medicare will pay for that, too.

For $17,000 a year, Medicare could pay for anti-rejection drugs. And it does, for the first three years after a transplant. And then for a lot of people, the organ fails because Medicare runs out and the people haven’t found other health insurance. That’s OK. Medicare will pay for another $100,000 transplant, if they can find an organ donor.

It makes sense in theory. With a new organ, you are healthy and should be able to get a job. But if you haven’t worked for the umpteen years you were on the waiting list because dialysis made you so sick, it’s a little hard to find a great job with full benefits. You can’t afford to take a low-level job with little or no benefits, because the Medicare will stop and your kidney will fail now.

I can believe that the government would limit anti-rejection meds to save money, but it’s costing taxpayers more.

My kidney daddy says he won’t let this happen to our kidney; he will think of something.

Meanwhile, there is a senator, mentioned in this part of the story package, who keeps proposing a bill that would provide lifetime coverage for anti-rejection drugs. Guess who opposes it: Big Dialysis. That’s just evil.

I’m not so political; I don’t write my congressional reps. But I’m going to write all of them and tell them my story and ask them to please ensure that my donated kidney will live on.

I’m so happy to see that Pittsburgh Tribune-Review writers Andrew Conte and Luis Fabregas were honored for “Failure to Inform,” their series on the failure of the medical system to get eligible dialysis patients on the kidney transplant list. Papers find it hard to fund investigative work at all, these days, so this is especially laudable.

My kidney girls the Flood Sisters are featured this week on the website Tonic. Since their dad needed and received a kidney transplant they’ve been doing what they can to seek living kidney donors for others. They found Dad’s kidney through Craigslist and have been coordinating transplants with living donors ever since. Their fourth transplant was just this month.

Tonic, indeed, in a sometimes uncaring world. Carry on, ladies.

Sri Lanka has decided to loosen the rules about who can be a kidney donor. Previously, if this article is accurate, one could only receive a kidney transplant from a relative, living or dead. In fact:

It was earlier possible to obtain a kidney only from a relation, monk or a priest.

Love that.

Anyway, now cadaver kidney transplant and living kidney transplants from non-relatives are allowed.

Worth knowing if you are considering being a living kidney donor: African American and Latino kidney donors have a higher incidence of hypertension, diabetes and chronic kidney disease, post-donation. And African American and Latino people in general have a higher incidence of those conditions, so I guess it makes sense.

Researchers say that while these findings should not be used to discourage anyone from donating … these factors should be taken into consideration when counseling potential donors about their future health risks.

Yeah, so take a closer look at your pre-kidney donation test results and your family history, and see what the risk is for you. I took all my test results to my personal physician to get a second opinion before I donated a kidney. It definitely gave me peace of mind to share the information with someone who knew my body better than the kidney transplant team did.

August 1, as per always, is National Minority Donor Awareness Day in the U.S.

It aims to bridge the gap between the disproportionately high number of minority group members who are waiting for an organ transplant and the disproportionately low number of minority donors. (You don’t have to be a member of the same ethnic group to donate a kidney to someone, but it can lead to a better match.)

Congrats to Oregon’s Lori Greshem on her new kidney, thanks to a kidney transplant from Mark Mabbott.

In completely unrelated news, the story goes on to warn Oregonians to watch for turtles on the roadway. Love it.

OK, let’s face it: All kidney donors are altruistic, so I’m not a big fan of that word as it’s used to describe people who donate a kidney to a stranger. But it hits Google better than “people who donate a kidney to a stranger.”

That said, a study out of the Netherlands has found that people who donate a kidney to a stranger have no regrets in follow-up interviews and would donate their kidney again if they had the chance.

The study’s got a very small sample size, but since many countries have only just started to accept unrelated donors into their kidney transplant programs, there just isn’t a lot of data yet.

Thanks to Pittsburgh transplant surgeon Ron Shapiro for getting this out there!

Recognizing that living kidney, lung and liver donors should not have to consider whether they can afford to donate, Alberta has decided to set up a compensation fund for living organ donors. The article notes that donors do miss time from work for all the pre-testing, as well as time after surgery for recovery. The article mentions 6 to 8 weeks off after surgery … living kidney donation is a laparoscopic procedure, and you’ll be back to work in two.

There are also grants like this in the United States for out of pocket expenses such as travel and meals. Time off work can be paid through short-term disability at your job. (Check with your insurer first, since kidney donation is technically elective surgery.)

Anyway, hurray for Alberta for taking this step. If you’re thinking of donating a kidney, don’t let money stand in the way. There are ways to pay for everything. Ask your transplant coordinator.