Friday, November 7, 2008


On Tuesday, my friend thought her daughter (who is less than 6 months old) needed a heart transplant. After yesterday's doctor's appointment, it turns out that she only ("only," ha!) needs open heart surgery to repair a hole in her heart. While open heart surgery is a Very Big Deal, it's much less of a big deal than a heart transplant. (And my friend, the mom, was still at work and functioning on Tuesday, preparing to take the rest of the week off to consult with doctors. I was amazed by her strength and her ability to be calm in the midst of what must have been a personal hell).

I received an e-mail from a family friend, this morning, saying that her brother's kidney transplant has been scheduled for this month. With all of the insurance problems they're having, they didn't expect to have anything happen before the end of the year. The family friend who sent the email is the donor, and I have so much respect for her selflessness. Of course, I'd give my brother (or sister) a kidney, too, but she has been so graceful about the whole thing - never doubting for a minute that that's what she would do, celebrating when she was a match, not expressing any concern for herself at all, even though the operation is more dangerous for her than it is for him.

The wait for a kidney from a cadaver is 5 - 7 years in the Chicago area.

That's 5 - 7 years of dialysis - which involves going to a clinic 2 - 4 times a week and sitting, hooked to machines, for around 4 hours while your blood is cleaned of toxins that will kill you if they're not removed. It's wonderful that such technology exists, but spending 8 - 16 hours a week doing that does NOT sound like fun, and isn't really compatible with high quality of life. It's also extremely expensive.

In light of all of this, I ask you to become an organ donor. My dad had a bumper sticker a long time ago that said something like, "Don't take your organs to heaven with you, heaven knows we need them here."


My problems seem very small by comparison, but I went to the doc yesterday and I'm back on the Z. 25 mg for two weeks, then if I feel like I need to, I can up to 50 mg for two weeks, then we're going to see what's up. Thanks for all the concern and support.

Here's a question for the ages, why would the insurance cover the 100 mg pills but not the 50?? Stupid insurance... They're getting a strongly worded phone call today.

Speaking of phones, my battery ran out, so if you've tried to call me in the last 18 hours or so and haven't been able to reach me, that's why... Hopefully it'll survive the field trip today.

13 pounds. :)


RobMonroe said...

The problem with the transplant process is that before you get to the wait list, you're usually in a pretty bad situation for a while. So that's adding time before you get to your 5-7 year wait. Distressing for those of us that assume we'll be on the list someday.

I will be praying for both of the friends you have mentioned. I can not imagine being in the shoes of considering a heart transplant for my daughter. Just can't comprehend. I'm glad that it's a less severe treatment, but OHSurgery is no fun to be a part of, even from a distance.

KaityK said...

Oh Amy you're so right, the transplant waiting list is unbelievably long and so many people never make it to the top to get the organ they needed. It's a terrible situation.
My mother lost both her kidneys in 1998 due to a prolonged case of pneumonia. She was on dialysis for a year and it was so hard on her body and spirit.
She was lucky and received a kidney from her brother and we will all always be thankful.
Needless to say me and my entire family are all organ donors now!!
I will keep both of your friends in my prayers.

Anonymous said...

This post really put things in focus for me. I have spent the better part of this week frustrated because the doctors still do not have a clue what is wrong with morgan so we get to continue to have her stuck with needles, but things could be worse. I will be praying for your other friends. I will also try to be patient while they narrow down what is wrong with my little miss. :) mandy