Transplantation

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On Increasing my Prograf + Worrying about Glucose Level

Yesterday while I was celebrating my really great lab results, I kinda failed to notice that the doctor's office had faxed the wrong ones to me. DOH! They'd re-faxed the labs from about a month ago, instead of the ones from earlier this week.

Of course I didn't even realize this until the office called me today to tell me the doctor wants to up my Prograf dose. I was like, HUH? Because the labs I'd gotten yesterday had an acceptable (but on the low-end) tacrolimus level.

I had the office fax me the correct set of labs. Again I held my breath until I had a chance to look them over. All the values are still awesome (creatinine .7?!) but my TAC level was down to 4.2 (supposed to be in the range of 5.0-10 for a post-transplant patient).

I guess I'd like to know (and you'll be certain I'll be asking my transplant doctor when I see him week after next) what the purpose of upping the Prograf dose is if all the other clinical signs of kidney function and graft health are excellent. Prograf can actually be nephrotoxic (bad for the kidneys) if the level isn't monitored carefully... AND since my creatinine is .7 - exceptional in the kidney-function department - does it really need to be increased?

I'm a little concerned about increasing my Prograf for a couple of reasons: First of all, I already have the more common, but still weird, side-effects from the dose I'm on (nerve tingling, intolerance to sudden changes in temperature, insomnia); Secondly, Prograf can 'cause' or 'contribute to' a transplant patient having a higher likelihood of post-transplant diabetes. Since my family history of diabetes is obvious (my dad, grandmother and several aunts/uncles and at least one great-grandparent) I'm not really keen on increasing my odds. Plus (and here's the part that worries me most) my fasting blood sugars for the last few months of labs have all been either in the very high-normal range, or in the bottom of the abnormal range. (on these labs, it was 92, on the last few labs its been 90-102, with the 'normal' range being 65-99).

Of course I'll do what my regular nephrologist directs and increase my Prograf from 3/2, to 3/3, but I'm anxious to see what my transplant doctor thinks when I see him.

In the meantime, here's to being thankful I've got a prescription for Ambien to use as I need :)

Every two weeks

Every two weeks I get post-transplant labs drawn. Every two weeks I hold my breath during the 24 hours between getting the blood drawn and having my doctor's office fax the results.

Every two weeks I stare at the results, mystified that my creatinine is between .8 and 1.1 - I can't remember the last year my native kidneys worked this good or my labs were this awesome.

Every two weeks I breathe a sigh of relief when the results have next to no "abnormal" or "out of range" numbers.

Every two weeks I (again) wonder how could I have known my brother for his whole life and never know his kidney would one day be doing all this for me?

All I want for Christmas

... is a lens for my Cannon Rebel XTi that has an image stabilizer. The Prograf still makes me so shaky that a lot of my photos (OK, MOST of my photos) are coming out all blurry. Frustrating!

(If you're wondering, here are the photos that aren't fuzzy...)

I probably should write about it

For the most part, my transplant went off without a hitch. My kidney worked from the beginning. I had minimal post-surgery complications. I didn't need high dose steroids.

But

There were two very specific things that happened to me while I was in the hospital for my transplant that I haven't been able to even talk about, yet, let alone write in a blog. One of those experiences was literally the second worst experience of my life, the first being my very first kidney biopsy when I was 13 (and the doctor screwed up and managed to 'biopsy' a part of another unknown organ, all the while I was 100% conscious and being yelled at by the doctor who was insisting that the terrible, horrible, unimaginable PAIN I was in... from the fact that they penetrated one of my spinal nerves... was ALL IN MY HEAD... oh, plus I was a scared teenager, not like that made it any better.)

The worst of the two experiences this summer is something that, for a large part, I've blocked out. And, I hadn't even thought about it, really, or realized I was blocking it - until a few nights ago when I was laying awake at night (yet again) having a panic attack for no reason. I don't know why, but I started thinking about it then and I could not get it out of my mind, even after dosing myself with Xanax and desperately trying to sleep.

I am still not ready to talk about it, but I can say this:

I am really, really, REALLY angry that it happened because it was something that didn't need to happen.

I'm even ANGRIER that I know now that PART OF the problem has since been discovered as an actual, physical medical issue (discovered because of the recent MRIs/ultrasounds, etc. for the hoo-hoo problem).

But, what makes me ANGRIEST is that the SPECIFIC PERSON (i.e. MY NURSE) who made the situation WORSE, blamed ME for exaggerating my symptoms. And not only that, but she said things to me that I later found out were not only against hospital rules, but were just downright INCORRECT (not to mention, mean and spiteful... what was the purpose in that?)

Even now, even knowing that to begin with it wasn't my fault, it wasn't something I could've changed, it wasn't something I could've seen coming, AND as discovered in the last month or so - it wasn't even something that my body could've MADE UP or had 'phantom symptoms' over... Even knowing all that, I seriously and honestly think I'm screwed up for life because of what happened.

Part of me feels ashamed to even say that my transplant experience wasn't all roses, because really? What did I get out of it in the end? A healthy kidney, and that's what matters most. After all, my brother went through a lot to give me that, so I keep telling myself that I have NO EXCUSE to complain about ANY part of the transplant. However, I still can't get this out of my head. Every time I start to think about it, my heart races and my head throbs.

Like now.

I don't even know why I'm telling you this? Maybe I really do need to write about it.

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