Transplant Consultation

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Usually writing, for me, is
fun and as easy as falling off a log. Sometimes, though, it is a difficult and trying process. Rarely is it both. This is one of those times. You see, we met with Kajsa’s transplant team
this past Tuesday. It was so scary and
exciting. We learned a few more facts
about the process. Some of them awe
inspiring and others simply nuts and bolts factual aspects of
transplantation.

We learned that Kajsa’s
workup only takes about six weeks. It
would take less time if she were not so little. There are a just couple of tests that need to be done which take several
tubes of blood. If you or I (or even
Maya) were to go in we could do these tests in one sitting. The amount of blood drawn is less than what
is taken at your run of the mill donation. But her body is so small that they have to stretch it out to keep from
taking too large a percentage of her blood at one time.

So here’s how it goes with
timing. Julie, Kajsa’s transplant nurse,
calls the insurance company to receive permission to do the tests. She the calls us and gives us the go
ahead. We take Kajsa to the lab once to
have two tubes drawn and again a month later to have three tubes drawn. These could be closer together if she wasn’t
still having her labs checked in between for her regular dialysis
monitoring. These blood draws of course
verify her blood type, as well as tissue typing. She’s also tested for a variety of viruses
including Hepatitis, Epstein Barr and HIV. These are standard for all transplant recipients, especially ones who,
like Kajsa, have in the past, received transfusions. The only other tests are an EKG and
X-Ray. It is rather hard to believe that
it is so simple. We will also; however,
be taking her to the dentist so that we can make certain that she has no
infections. This could have horrible effects
upon her imuno-compromised body post transplant. But I’ll talk more about that at another time.

Once these tests have been
done, Julie again calls the insurance company to get permission for surgery to
be performed. She then calls us (as well
as sending a formal letter) to inform our family that Kajsa is ready and
transplant could happen at any time. She
does this [calls] because kidneys have become available immediately. People have also had to wait for a year. One never does know. It’s somewhat like being 40 weeks pregnant
for months on end.

Now, here is the part where I
begin to have a harder time writing. You
see, I’m generally not a pushy person. Therefore, this is very uncomfortable for me. So please bear with any awkwardness in my
writing.

When we were consulting with
Kajsa’s nephrologist, Dr. Morgenstern, he laid out the differences between live
and deceased donor transplants fairly well. The first, easiest, and most obvious of these was the issue of
scheduling. Of course, with a live
donor, you can do this at any time, school holidays, sick leave, etc. Now this isn’t a huge deal to me. I’m a Doula for Pete’s sake. I’m very
good at waiting. Kajsa’s young enough,
too, that this has no real impact on her. It is; however, quite a good thing to know for any one who might
be considering donation.

The other thing that Dr.
Morgenstern stressed about live vs. cadaveric transplantation is that, there is
a huge difference when it comes to organ rejection. Now, this would not be as much of an issue
for an adult, or even a teen. But with
these young children, their bodies are learning, in that extreme two year old
way, the difference between self and not self. In other words, their body basically looks at this dead organ and goes,
“Euuw, I don’t want that old dead thing.”  But, when given a fresh, pink,
healthy kidney, the body is more susceptible to being fooled into accepting the
new organ as “self”. This is, of course,
done with the help of great handfuls of steroids. “We’re her to (clap) pump you up.”  (That’s from an old Saturday Night Live skit
for anyone currently scratching your head in befuddlement.)

So, in case you hadn’t
already figured out where I was going with this, I am (at the behest of Kajsa’s
entire transplant team) sending out a call, a request, a summons. If there is anyone out there who is between the ages of 18 and 45 who would be
at all interested in being a kidney donor. Please let me know. Or if you are
worried that you might get my hopes up and then have to back out; you can call
Kajsa’s transplant social worker Sandra Coorough. Her direct line is (602) 546-4709. She has stressed to me that any one who
expresses interest can change their mind at any time. She is an advocate for the donor, not the
recipient. I want to add that a donor
does not have to be related to us, and that all your transplant related medical expenses
would be paid by Kajsa’s insurance. As
for travel, we would find a way to make it happen.

OK, enough about that. Some other things that we found out had to do
with the procedure itself. When we were
speaking with Julie (the nurse), she said that she’d actually gotten to sit in
on a couple of these surgeries and that it was amazing to watch. Apparently, when they bring in the kidney,
it’s been on ice and isn’t really looking so great. But, the moment that it is
hooked up to the blood supply…it simply blossoms. She likened it to one of those time lapse images
of a rose in bloom. Just thinking about
it gets me all choked up for some reason. Then, she said, the ureters (tubes which connect to the bladder) start
dripping urine, and you know that it’s working. That would be such an amazing sight for me. Oh to be a sterile fly on that wall. Gee, can you see why I’m constantly a bit
torn between terror and elation?

Chris sometimes accuses me of
having turned off my emotions. It’s not too
hard to see why. If I didn’t shut them
off somewhat, I’d probably be locked up for walking down the street laughing
hysterically with tears streaming down my face. There’s just such a broad range of emotions that goes along with all of
this.

Speaking of emotional vacillation,
I found out some shocking data from Dr. Morgenstern on Tuesday. Apparently, 25% of children dialyzed prior to
age one do not make it to their 1st birthday. Now aren’t you glad I didn’t know that a
couple of years ago. When he told me
that, I swore. Yes, right there in the
middle of the treatment room.

We went on to talk about risks
& benefits of transplant, meds, etc. There was so much information that I think I may save that for another
day. But jut one more thing.

I wanted to end by saying
that after we were done with this exhaustive and exhausting appointment, we got
to meet with Kajsa’s new pediatrician, Dr. Bode, for the first time. She appears to be both knowledgeable and
kind. Kajsa seemed to like her…and,
get this; she brings a gift of a new book to every appointment. Now that’s my kind of doctor.

For more information on kidney disease,
dialysis, transplants, etc, I have several great sites listed under the  kidney links section. These can be found within the left sidebar of
this page.

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7 thoughts on “Transplant Consultation

  1. wow. that’s a lot of information and emotion for anyone to take in.
    i hope that you are able to find a live donor. you and kajsa continue to be in my thoughts as she goes through all the prep work.
    btw, that’s awesome about the new book w/ every doctor visit. sounds like my kinda dr. 🙂

  2. Hi! I am from Care2 and saw you there but I also have a bunch of bloggin buddies that you have too. Swing by when you have time. I’d love to link you – let me know if it’s ok

  3. amy:
    Thank you for the well wishes.
    And, I think that Dr. Bode and I will get along juuust fine.

    Harmonia:
    Thanks for stopping by.
    Of course you can link to me.
    Also, I did swing by your blog one night. But it was late so I was quite tired and didn’t leave a comment for fear of being a bit incoherant. It looks like you have a very nice sight over there. I’ll head over again soon.

  4. That is a lot of information. I continue to be amazed by the emotional strength you show when “talking” about this.

    I sincerely wish that you are able to receive the best possible organ for Kajsa. Your family will be in my thoughts and prayers.

  5. An amazing thing is that after I posted this to our family’s web site, one member stepped forwad as possibly being interested.
    Now, we don’t know how serious she is. We don’t know if she’s got a viable organ. Heck, we don’t even know if they have the same blood type. But the mere fact that she expressed any interest at all, made my entire day, yesterday.
    I’d love to be able to make sweet posts like this one: http://moreena.blogspot.com/2005/07/cliff-is-here.html

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