Today we met with Dr. Fabrega. He was extremely knowledgeable and even
somewhat personable. We discussed pros
and cons of transplant surgery. This is
a necessary part of the process. Everyone wants to make sure that we realize that a lifetime of immunosuppressants
isn’t a walk in the park. But, of
course, it beats dialysis hands down.

We talked about the differences between
live and cadaveric donation, and how much more significant that is than whether or not an
organ is a good “match”. Everyone keeps
pushing the choice of a live donor on us…as though we have some control over
this. Such things are out of my
hands. About the only criteria that we
have for Kajsa’s kidney is that it be type O and healthy. And, of course, the younger – the
better. I learned that a good kidney can
last a lifetime if one is careful.

We talked about half-life. This is a concept that I didn’t really
understand before. I’d only heard it in
the context of, oh say, uranium and Twinkies. The formula behind half-life is quite simple really. If 100 people get a kidney, they measure how
much time passes before there is a failure in half (or 50) of the people. Now, this can be attributed to anything from a
person discontinuing meds to patient mortality for any reason. It turns out that the average half-life of a
kidney is 15 to 20 years. This is
different information than we’d remembered receiving, and very
encouraging. Considering that Kajsa will
be under our care for the next many years, and is starting out young…we can
hope for a much higher retention than the average.

So after our uplifting conversation with
Dr. Fabrega, Chris, Kajsa and I went back to the HLA lab to perform her final
blood draw. This is the batch that will
test her DNA etc.

Now we wait. I’ve performed all my tasks. I am not very good at NOT being somehow in
control of this part of our lives. Kajsa’s
health care is my full time job. It’s a
bit frightening to know that someday, when I least expect it, we will get a
call…and then everything will change, again.


8 thoughts on “overwhelmed

  1. It’s not that easy to find a live donor. Without getting into a discussion about whether altuism really exists at all, most live donors are relatives. I’m over 60, have long term high blood pressure, and B+ blood type, and Lynn is A- and of ‘younger’ age. It would be wonderful if someone who was a match could step forward, but it probably isn’t going to happen and we need to just go with the other option. I’m glad you felt good about the surgeon. Good and likable are best, but given the choice between the two I would take good everytime. I suppose after Kajsa’s HLA results are known and the information goes into a database you will get paged when there is a close match. There are a ‘blue million’ HLA antigens. Did the surgeon talk about how close the match needs to be?

  2. ccw:
    I agree. I’m one of those people who want to know every possible scenario. Surgical consults like this usually take a few minutes. There are just so many people that you’ve talked to prior to getting to this point, that it is mostly considered simply another item to check off.
    Our surgeon was with us for more than an hour. The nice thing was, he looked totally relaxed and unhurried…as though we were just having an interesting discussion. It was so refreshing.

    Thank you. The strength thing I’ve got in droves. I eat nails for breakfast. It’s the losing control part that makes me panic.
    The waiting is the hardest part — Tom Petty
    Anticipation…it’s makin’ me late. It’s keepin’ me waiting — Carly Simon
    Once she’s in surgery or the PICU, I’ll be a rock. I know how to do that. I’ve been there before.

    Rodney Roe:
    I never expected you to step forward. With all do respect, you’re too old. You’re right; we want a non smoking, non-hypertensive 20 year old. Unfortunately, those are the people least likely to have filled out a donor card. “Look at me, I’m invincible!” she said as she got into the car with her drunk prom date, kind of mentality.
    Chris and I feel rather vampiric, as of late. It’s super creepy when I find myself thinking about things from such a warped perspective. For instance: When we first moved to Arizona, we were horrified to discover that it is a non-helmet state. We were driving down the road and saw a bunch of reckless motorcyclists wearing dew rags. We looked at each other and realized we’d just had the same morbid thought…that this fact alone could increase our daughter’s chances of receiving a good organ. This whole aspect of our life is frankly, uncomfortable on so many levels.
    As for the HLA aspect of things, that’s the weird part of it all. It is apparently far less of an issue than previously believed. According to Dr. Fabrega, when they used to do live donation strictly from family members, they thought that it was the match that made the transplant so much more successful. Then they opened things up and began accepting donations from non-related living donors. They found at that time that there was as high a success rate (over cadaveric) as they’d found with related live donation. In fact, Dr. Fabrega said that if he had two organs to choose from: a sixty year old good match and a twenty year old decent one, he’d absolutely choose the twenty year old.
    The fact of the matter is that she will be on immunosuppressants for the rest of her life…period. So, as far as I can tell, they look primarily at blood type (O) and then check to see if it’s a healthy good kidney. But even that can take a good while. The nice thing is that she goes on the list no matter what. So, if someone got worked up, and found out that they weren’t a “good” candidate for some reason – she wouldn’t have wasted that time.

  3. I hope you find a good donor soon, and you can put this part of the process behind you. I’m sorry you have to wait for this time. I hope that Kajsa gets the match she needs and has a healthy life. You all deserve that. My prayers are always with you.

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