One of the frustrating aspects of my life right now is that a lot of my clothes still don't fit quite right. I didn't realize (and really, if you would've told me I wouldn't have believed it) that sticking a kidney in my abdomen would mean a change in my pants size. The fact that my sizing has changed is personal cause for anxiety, anyway, but the fact that I'm still so bloated almost 6 months later is just... uncomfortable.

I've gained some weight since June (which I'm trying to accept... because, really? I was underweight before and I'm still not even "average") but the other reason I'm feeling bloated around my middle has a lot to do with my hoo-hoo issues. Those two things, plus the fact that I have a giant scar traversing my lower right-side, across the waistline of my jeans, make it uncomfortable to wear... well, just about everything.

I refuse to buy new clothes because I'm still holding onto the hope that I will eventually be back to the size I was pre-transplant. In the meantime, I seem to be always wearing the same pair of jeans (the ones I used to call my "fat" jeans for Monday dialysis treatments when I was especially bloated) and the same tired jammie pants around the house. I'm a sexy beast!

... but what I wouldn't do, right about now, for a pair of nice-fitting jeans that didn't cut off circulation to my lower extremities! LOL

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 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?

... 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...)

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.

If this wasn't already enough to make my head feel like exploding, then getting a bill from my former pharmacy company, PharmaCare, was.

Um, I owe you $1037.58? From JUNE? Not to mention, the forthcoming bills for drugs from July, August and September? I don't think so.

There is a reason why (and I know I'm lucky, here) that I have two insurances - its so I won't get unexpected bills.

It seems to me that I've never gotten a bill, after-the-fact, from CVS or Walgreens or the freakin' grocery store pharmacy for that matter... SIX MONTHS LATER. Its usually "here's my insurance cards," and then they tell me if the drugs require co-pays (never more than $7 each) and then I PAY the co-pays and then I get my drugs. Ever try to get prescriptions filled without paying for them in advance? Doesn't really work, does it?

According to PharmaCare it does. They apparently went on some "assumption" (WHAT?) that [Other Insurance Company] would pay for the dugs before they actually gave me the drugs. The Pharmacare rep said, "Well, I guess we thought [Other Insurance Company] was going to pay for the drugs when you got them in June, so that's why you only paid the co-pays then. We didn't know they weren't going to not pay for them, so that's why we have to bill you now."

YOU THOUGHT? I'm sorry I don't buy that. Not for a second. Sound fishy to you? Yeah.

What was even more unexpected was PharmaCare's answer to my questioning if they even BILLED Other Insurance Company: "[Other Insurance Company] won't pay the 20% for your anti-rejection drugs that Medicare doesn't cover..."

WHAT?

NO. They're wrong (at least according to Other Insurance Company, they're wrong) and I'm angry that I even had to listen to PharmaCare's stupid rep tell me that Other Insurance Company rejected their claim for payment. RIGHT! When I called Other Insurance Company (two different numbers, in two different departments, mind you) I was told that PharmaCare hadn't even billed them.

While I haven't had any problems with the local PharmaCare and in actually getting the medications from them... I have been REALLY disappointed that I allowed myself to even be talked into using them as a pharmacy to begin with. I've always used CVS pharmacy and never had any problems. However, when I was still in the hospital getting my transplant, I was 'informed' that I needed to use PharmaCare because they are a "specialty" pharmacy (BULL) that could handle my transplant drugs better than a "regular" pharmacy. Of course I've since figured out that, NO, I can still use my "regular" pharmacy, but damnit. Why did I get taken advantage of while I was in the hospital?

You'd think someone like me would've seen that coming.

Yesterday evening we went to see Beowulf in 3D at the IMAX theater.

If there is one thing I'm semi-germaphobic about, its public theaters (in general). Not only do most of them look dirty, but they always smell dirty, too. And, thinking about using previously used 3D glasses at the theater?

Ew. Yuck.

I had a mini-meltdown in the truck before we went into the theater when I realized I was out of hand sanitizer. I usually carry at least two different kinds in my purse, plus some in the console of the truck, and yet I managed to get to the theater without ANY. Go, me (not!)

We'd gotten to the theater early (good seats, yah!) and sat down before they were passing out the 3D glasses. When more people arrived and the glasses were being distributed, Ken got up to get us a couple of pairs. When he came back and started to hand me mine, he must've seen my reaction (not intentional, though...) Lets just say the idea of wearing the glasses was not the least bit appealing. But, before I could say anything, Ken excused himself from the theater and disappeared. I wondered where he went.

Before I could blink, Ken was back with some folded-up paper towels that he'd gotten from the bathroom. He had wet them and added anti-bacterial soap... all so he could clean off my 3D glasses. He cleaned off the glasses and handed them to me with a smile.

Have I mentioned how lucky I am? He knows me so well. I think he read my mind...

During the time when I was still in kidney failure and on dialysis, I came across the website But You Don't Look Sick? that pretty much sums up my own

I finally got a moment to do some "tidying up" on the blog. I added a couple of Modules (points to the right, at the menu) so you can now read posts by category or from the Archive (by date).

Is anyone interested in Forums?

I'm still learning Drupal, and I admit to being frustrated at its differences (in useability) to WordPress; but all-in-all I think running Drupal will serve this site better (in the long-run) than WordPress. I still heart WP, though - see it on Krississippi.

P.S. Thank you to everyone who sent me a contact to say 'happy Thanksgiving'!