Just when I think I'm out...

They pull me back in. They, being the people at the PRI clinic which is the clinic I go to for transplant prep. After the tests this week I thought I would get a break. Well, this morning I get a phone call that my doctor wants me to go in for a urine culture. Not a big deal, but at this stage I question everything. My next regular appointment isn't until Mid-September and I do a bunch of blood tests and urine stuff 2 weeks before. So why do they need one now? Is there something going on I should know about? I know I should not stress out, but what immediately runs through my mind is, I've been drinking more Diet coke (I'm not supposed to have anything with phosphorus) than I should and I definitely have not been eating the best, so will this show up in my culture? and all of a sudden I am being ordered to prep for dialysis. This is silly, I know and the most they can see is that I have a UTI (always do) and protein in my urine. My creatinine might be up as well, but no where near the 700 the doctors see when patients do go on dialysis. So, I have to calm my fears and move on. I do have a bit of a secret though. I question everything my body is doing. There are some things that start to really show when you are in extreme kidney failure. Nausea, lack of appetite, extreme tiredness and trouble sleeping, swelling and leg cramps, coughing, and dry skin are all the things I get questioned about every time I go to an appointment. Always, the answers are no. When I am at home though, I question exactly how I feel, and I worry "Am I really just a little tired today or is it kidney failure", everything I observe in me I think, is this my kidneys failing or is it just normal life? I truly believe this is paranoia creeping in and I push it all back, but sometimes I am really afraid it is not. I know I am sick, I know this will get worse before better and I have spent the better part of my life trying to not let this illness rule me, but that fight is getting harder.

I also have to learn to be a little more forceful. I should have asked why they wanted the culture and if it was something I should be concerned about. The one thing I still have to embrace is that this is my body and if people want to do something to it I should know why.

Good thing I am not claustrophobic. Oh wait... I am.

This is my record of my expedition into all things kidney transplant. The medical marvel bit is due to the fact that my kidney failure is not caused by either genetics or diabetes. Every time I enter a new medical facility for a consultation or test, invariably I find a flock of doctors crowding around asking me the how and why of my condition. Which can be embarrasing when I have a catheter shoved into my nether regions and my legs splayed up, or a boob hanging out while they attach electrodes. So, before you ask - when I was a child I had chronic UTI's (bladder infections), this caused reflux which in turn caused kidney infections. All those infections add up to scar tissue that caused my failure.This leads up to why I am claustrophobic and why it is a big deal today. Before you have a transplant, they make you do all these tests because they won't give you a new kidney if your body can't handle it, go figure. One of the tests is a stress test. Yes, the cliche one with the treadmill. No oxygen mask though, which was disappointing.I originally was supposed to have this test in May, but they cancelled and moved it to early June. Which I then cancelled because I had tickets to a play off game and there was no way I was going to get up a 5:30 am the next day especially since I had to forgo caffeine 24 hours before the test. The appointment was then changed to the end of July, which gave me plenty of time to hop on my treadmill and wow them with my stamina. Except it is summer and the treadmill was ignored for more fun pursuits like reading by the pool or watching season 2 of Beverly Hill 90210. The day before I was supposed to go for the test I called just to make sure. Well, once again the days had been moved and thanks for not telling me, since I would have had to get up a 6am and drive 45 minutes. They would have felt my wrath for sure. This did mean more opportunity to get on my treadmill and a later time meant more sleep. But look, over there - it's Facebook. See ya treadmill.Finally, it's time for the test a lovely 2 parter. Day one I go to the hospital, and as usual parking is a pain in the ass. I go to Nuclear Medicine and of course, they don't have my paperwork. A nurse grabs for a shot of the old nuclear cocktail, and we hit the first roadblock, my very tiny veins that hide in hospitals. After 2 pricks of the needle they finally inject with radioactive fun and I wait. 20+ minutes later I get to go for my CT scan and this is where the claustrophobia kicks in. This is the puppy the put me in : http://www.medical.siemens.com/webapp/wcs/stores/servlet/ProductDisplay?storeId=10001&langId=-1&catalogId=-1&catTree=100001%2C12788%2C12756&level=0&productId=138597 , except the two shelving things are joined together like an open book and hover down around your chest and head missing by inches, for like 15 minutes. The round part was also slightly distressing but not as much. Once they finish my scan they send me off on my merry way to pay the piper (or gate guard) my $13 to escape the hospital. Well, until tomorrow anyways. Day 2 begins with me dying for my cup of tea and having to have water instead. At least I can eat since I only have to fast for 4 hours before the test. Get to the hospital, fight for parking, yawn and hoof it to Module R. Where I pull out my trashy novel (always the best choice for waiting). The nurse comes for my echocardiogram. More sticky electrode holders are stuck to me and some cold gel later I am off to wait for the treadmill test. Finally, as I am getting to a particularly salacious part of the story, which is always the way, I get called. I brought all my work out gear but am told to take off everything on top, put on a gown and my running shoes. Ok, so I am going to do this in a skirt, comfy.Enter a room where my nemesis is and see on a counter more needles. Great. Turns out they may have to give me some drugs to speed the process since I have no cartiledge in my knees and cannot run. This creates another "find the vein dance" by the nurse/technician. Butterfly clip in, more electrode patches affixed (10 this time), and the electrodes hooked up (I feel like a robot) I am almost ready for the test to begin, but first... (hee, thanks Chenbot), the doctor just has to know alll about me - repeat my compelling story and finally on the treadmill. Blood pressure cuff on, drugs a drippin', I am off - to a really slow start. I thought this was supposed to be a challenge people. Wow, the drugs going in my arm are really cold and so far that is the most uncomfortable part of the test. Wait, here it comes, elevation. Yeah, not so much. So far this test is pretty easy. Oh wait, here are 2 more doctors wandering in and yep, they want to hear my story too, what a shocker. I think I will just type it out in a card and laminate it, kind of like the sign language cards deaf people hand out. Finally the test is over. Not bad, I could have gone farther and faster, but who am I to argue? I get my little cup of water, the electrodes are ripped off, damn that almost hurt as much as the needle and I change and wait for the guy to come wheel me back to the claustrophobia machine. I go down have another go at the CT and finally on my merry way. Good no? Well, no, since this is one of the tests that has to be repeated once a year until I have my transplant. I have done all the tests now so I am not a medical punching bag again until September when I go back for my regular blood tests and 24 hour urine, which is sooo much fun. Stay tuned.
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by Anna C.