Part Thirteen: Gus Gutz

When I got home from work this evening, there was a decent sized box waiting for me. I hadn't remembered ordering anything, but my memory isn't always the sharpest.

I was delighted to find this inside:



May I introduce you to Gus Gutz, a two-foot tall educational toy with a surprise inside, courtesy of my friends Katie and Beth.

Thanks guys! Not only is he fun... but he's soooo soft... and gross. YAYAYAYAY!!!!

Part Twelve: 27 and Waiting

From the voicemail the coordinator had left me last Friday, I had gotten the impression that there was no need for me to call her back unless I had specific questions about the results of my previous tests.

I waited several days, hoping that she would contact me with information regarding my next scheduled appointments, but she never called. So I called her and learned from her voicemail message that she was out of the office until next Monday. While I have the option of speaking with another coordinator during her absence, I decided just to wait until she gets back.

As anxious as I am to get the next phase of testing done, I also realize that there's no big rush. A few days isn't much in the grand scheme of things.

Thanks to all who have been regularly checking in for updates.

This past Monday I turned 27 years old. While it was pretty much a regular day for me, I did take some time to reflect on where I am at this point in my life. It's one of those weird things that you can never quite imagine when you're 7 or 17. Just like now it's hard for me to imagine where I will be when I'm 37 or 47 or 57 or beyond. I guess I am proud of where I am and what I have accomplished, although I had always imagined so much more for myself. One thing I never could have imagined, though, was that I might be giving my dad a kidney.

I've always been of the mindset that age is just a number... but there's just something about this year that has suddenly made me feel older.

Part Eleven: Clean Bill of Health

When I left work today, I saw that I had a message from the transplant coordinator. Yesterday, she had indicated that I would be hearing from her sometime during the next few days, but I wasn't really expecting to get a call so soon. It kind of worried me a little bit... but her message was good news:

Part Ten: Screwy Tires and Iced-Tea Makers

So last night I get a call from my friend Suzi that went a little something like this:

"So I figured you're just sitting around peeing, and I just want to hang out, so I'm going to bring my iced tea maker over."

Now there's a great friend for you! We drank lots of iced tea and listened to the ballgame and knitted some.

Today was like the first day of school and I woke up around 6:30am in anticipation of the days events. I tried really hard to sleep longer but I had to pee from so much iced tea the night before that I went ahead and got up for one final fill in the ol' collection jug.

I wasn't allowed to eat or drink anything this morning so I skipped my usual Mountain Dew breakfast and prepared for the day.

On the way out of my garage and down the back alley I noticed a weird tapping noise as my tire revolved. I got out and looked at my tires. They all seemed fine. I started to get back into the car when my eye darted to a large screw that was poking out of the front driver's side tire. Sweet! I then started to panic a little because I was afraid my tire was going to go flat super quickly and I wouldn't be able to get to my tests today. Then I remembered that I only live about a mile from the hospital and that my parent's were driving up this morning to meet me. If I made it to the hospital but my tire went flat in the parking lot, I knew I wouldn't be stranded. So I took the chance and continued driving. I parked strategically in case I needed to get at the front tire to change it. Then I went on to my appointments.

While I appreciate the flexibility of just being told to go to the outpatient building "between 8 and 10am"... I hate not having set appointments. It seems weird to me. I knew that I would be meeting with several people after my tests and was concerned about being on schedule for that, but I was told to just call them when I was done. Ooooo-kaaay.

When I got in the outpatient building I was troubled to find that the only test orders the receptionist had on file for me were from my previous blood typing/cross matching visit. Rather than call the transplant office and verify that this was correct, he just shrugged and said, "Well, I guess we'll just use these same forms." WHAT THE!?!?! Yeah, that seems like a great idea.

After a few minutes in the waiting room, the nurse came and got me... led me the familiar route to the blood room and started to sit me down in the pistachio green adult high chair. Then she looked at me, looked at the paperwork, and then said, "Didn't we do this already?!??"

Uh... YEAH! I'm glad somebody there is on top of things. While she was waiting for the appropriate paperwork to get faxed down, she went ahead and did my EKG. For that, she took me behind a curtain and had me lay down on a bed. She then asked me to lift my shirt up so that she could get to my chest. Then she attached a bunch of sticky things to me on my chest and a few other places. Then she attached a bunch of wires to the sticky things and took a reading. She had to move the patches around a few times until she got a good reading. Then she printed it off and was done. It probably only took five minutes at the most. [For a more scientific explanation of the EKG look online somewhere...]

After that, she had me sit in the chair, then she drew probably at least six different tubes of blood in varying sizes. I know that some of the stuff they were testing for was HIV and Hepatitis. The nurse told me that I have little veins. She took my 24-hour urine collection and recorded the start and stop times. Then she handed me a cup and asked me to give her another urine sample.

Let me just say that I HATE giving urine samples while I'm at the doctor's office. I've only had to do a drug test once for a job and I prepared for that sucker for drinking lots and lots of water and not peeing for a long long time beforehand. I was practically wetting my pants for that one.

But I hate when they spring them on me and I'm not expecting it. First of all... maybe I don't have any pee in me. And the other thing is that I get too nervous to pee. I just can't pee on command! It usually backfires. But I went into the bathroom and the nurse had given me some special moist towelette to wipe myself with before peeing. And I sat there and thought about the iced tea maker from last night and then I was able to squeeze a bit out. I told the nurse that she got lucky this time and she chuckled like she hadn't already heard that one a million times before.

After that, I was led back out to the waiting room where I was quickly whisked away by the x-ray technician who was going to be doing my chest x-ray. I was taken back to a small dark room filled with x-ray equipment and he asked me to remove my shirt and bra and had me put on a gown. Then I had to stand facing a board and breath in really deep while I took the first x-ray. Then he had me turn to my side and lift my arms up above my head and breath in and he took another one. That was the end of the day's testing.

I walked over to the hospital which was next door and attempted to find the Transplant office. They were doing some construction there and I had a difficult time finding where I was supposed to go. I got a little worried when I got to the 5th floor (where the office was), stopped at a nurses station and asked where the Transplant Services office was and she gave me a blank look. That didn't instill much confidence in me. She did help me find the place though, which was tucked back in a little corner. Not really what I imagined at all. It was a cluttered little office that smelled like coffee and donuts and paperwork and bad textured cubicle walls. I was directed into a small conference room where I met with the financial advisor first.

She really didn't have too much to say and I really got the impression right away that these meetings were some sort of formality. She basically just said that she wanted to make sure I had thought about how I would handle being off work and then she got worried when I told her my health insurance was ending soon, even though I'm signing up for a different plan next week. She was worried that I might not be able to get insurance or something if they knew I was going to donate a kidney. But I told her, as far as I was concerned, I hadn't completed my tests or got any results back yet. I haven't met with the kidney doctor or even made up my mind yet. Until I'm laying there on the table under knife, I still have the chance to change my mind. I don't really feel like I'm hiding something from them. Like I've got cancer and didn't tell them or something.

Her main reason for being concerned was because my dad's insurance does not cover the medication I will require after the surgery and it also doesn't cover any related checkups after six months. Plus, it's good to have health insurance.

Next I met with the social worker who asked me questions like, "what are your leisure activities?" and "why do you want to do this?" She took down a lot of information, shook my hand, and was out the door. If she had been any sort of a good social worker she would've been easily able to make me cry... but I guess there was no need for that.

As I was waiting for the last meeting with the transplant coordinator, I heard familiar voices outside the conference room. It was my mom and dad! My parents joined me for my meeting with the coordinator which was an overview of what to expect during surgery. I found it to be somewhat informative. My parents were asking more questions than me and my mom nervously tittered during uncomfortable moments, like when the coordinator spoke of me and my dad taking laxatives before the surgery.

I was told that I would get my results within the next couple of days and if everything was clear, then I would have the CT scan and meet with the kidney doctor.

Overall, the second round of testing and my meetings went a lot quicker than I thought they would. The testing didn't take very long at all. I was at the outpatient building for an hour at the most, and that was with the little paperwork mix-up.

I still don't feel like this is really happening.

Part Nine: 24-Hour Urine Collection

Warning: If you don't want to read about my normal bodily functions, you should probably skip this one.

Well... surprise, surprise. Urine Collection isn't as much fun as we all imagined it would be.

I've been pee-anxious all day.

Last night I taped a note to my toilet seat lid, just in case I somehow forgot about the collection going on today.



This morning I woke up at the ungodly hour of 7am and hurried into the bathroom to officially begin my collection. As you can see in the above photo, I made sure to mark the time, according to my cell phone clock (which I imagine to be the most reliable of all the clocks I have).

I never made it over to the outpatient office to pick up an "official" urine jug and "hat"... and had to settle for a water container and a plastic cup instead.



At some point during the morning, I realized that I had to go #2... and then I panicked because when I go #2... I also generally go #1 simultaneously. So I had to be very careful to go #1 FIRST... into my little cup. And THEN go #2... NOT into my little cup.

This is hard work, folks.

Around noon, I was peering into the jug that housed my growing collection of urine and to my horror noticed that there were two CAT HAIRS in the pee!!! I am pretty sure that I am not urinating cat hair, so it must have somehow floated through the air into the cup I'd been using to catch my pee. I couldn't stand the thought of some lab tech finding cat hairs in my pee so I carefully fished them out. Ewwww... (Sorry, no picture.)

A need for groceries forced me out of the house around 3pm and on the way home I was lured in by the McDonald's drive-thru. Somehow... I ended up with this:



Okay... so drinking a SUPER SIZE Dr. Pepper on the day that I am doing my urine collection probably isn't the best idea. I'm hoping to limit my urine collection to just one container, as I can't stand the thought of lugging multiple containers of pee into the doctors office tomorrow morning. Also, my pee is already so super-concentrated that it almost comes out of me in sugar-cube form (just kidding... don't worry).

The other bad thing about keeping a jug of urine around the house is that it makes me feel like I live in a nursing home or a hospital. That is all.

Unless something drastic happens... like I accidentally spill my urine collection all over the place or something... I probably won't post again until tomorrow which is the big test day. HOORAY FOR EKG'S and CHEST X-RAYS and OTHER STUFF!!!!

Part Eight: Milk Jugs and 2-Liter Soda Bottles

So I successfully smuggled my phone into work this morning... but had turned the ringer off in case someone attempted to call me while I was passing through the security checkpoint. Of course, I forgot to turn the ringer on immediately after I arrived at the caricature booth and missed the call I was expecting from the transplant coordinator.

She left me a lengthy message confirming that things were good to go for my days off on Wednesday and Thursday.

Wednesday
24-Hour Urine Collection.

So as the name of this test would indicate, I am going to be collecting my urine for a 24-hour period, starting on Wednesday morning. When I get up that day, I will mark the time then go to the bathroom and flush it. After that point, any time I urinate I will be collecting it in a container. I was very surprised when the coordinator stated that I could use a milk jug, or water jug, or 2-liter soda bottle for this purpose (as long as it is clean and dry). That seems super-unscientific somehow. She also gave me the option of picking up some jugs and a "hat" from the outpatient office to use for collection.

Apparently the "hat" is a plastic device that fits under the toilet seat to catch the urine, which is then poured into the jug. This seems like it would be a lot easier if I were a boy... or if I had the "shenis" or the "magic cone". Ha ha.

So I collect my urine all day long... (thank goodness I am off work for this)... and then the next morning I get up, write down the time and pee one final time into my collection device. Then I lug this container (or containers) into the office for them to take a peek at and get my blood drawn again.

The point of this is so that they can find out what sorts of neat things are passing through me in my pee and to check out how well my kidneys are functioning. If they find out that my kidneys are crappy... then it probably wouldn't be a good idea for me to donate one of them to someone else.

Thursday

The coordinator told me that I'm not allowed to eat or drink anything other than water after midnight because they are going to be doing a bunch of tests on Thursday morning.

In her lengthy message, the coordinator neglected to mention a time or a place for Thursday. That seems kind of important... but whatever. At some point during the morning on Thursday I will be taking in my urine sample, having blood drawn, and getting a chest x-ray and an EKG. I will also be meeting with the social worker, the financial coordinator, and finally meeting the transplant coordinator face-to-face.

The chest x-ray and EKG seem pretty routine... but I am interested to see what happens during my meetings with all these strange people during the afternoon. I know that they are basically trying to figure out WHY I want to donate a kidney, whether I understand the risks, and whether or not I will be able to handle the financial setback of being off work for the occasion. Oh yeah... and that my dad hasn't offered me some incredibly large sum of money to purchase my kidney. (Unless he's got his fortune buried in a jar in the yard somewhere, I don't see this as an option.)

Obviously, I will provide more details on these events as they unfold. HOORAY FOR URINE COLLECTION!

Part Seven: Dreams

I woke up crying in the night from a dream in which I was told that I could not donate one of my kidneys to my father. You can't imagine my relief as I woke up, face buried in my pillow, and realized that I still hadn't done any additional testing.

I am hoping/expecting to receive word from the coordinator today about my next appointment. This seems like it's been dragging on forever. I'm going to try and smuggle my phone into work this morning so that I might answer her call in person. With my luck, I'll be in the middle of drawing a caricature and won't be able to get to my phone.

I am off this Wednesday and Thursday and am hoping to be able to go in on one of those days. If not, I am about to become incredibly available soon... as my theme park work schedule drops to weekends only.

Part Six: Foot Draggin'

I don't really have much more to report since my last update. I had Thursday and Friday of this week off work and was really hoping to get things rolling while I was home and had access to my phone. Unfortunately, this is all I have to show for myself:

There's still a chance I could get a hold of the coordinator at some point today, so keep an eye out for an afternoon update.

In the meantime, here's a picture of me and my dad from a few years back when we went to see the Cardinals in the World Series (and ended up seeing the Red Sox win the World Series... bleh).



Evening Update:

I had my phone near me at all times today, as I waited for the coordinator to call back. Around 2pm, I left another message for her, just in case she hadn't gotten the one I'd left yesterday. Around 5:30pm, I still hadn't heard the phone ring... and I gathered my things and headed out to dinner. As I picked my phone up, I noticed that I had a message and a missed call. *CRAP!* The coordinator called and I didn't hear the phone ring somehow. She left a message suggesting that if I called back and got her voicemail, that I should just leave a message with the times and dates I was available for my next appointment.

So I called back and did just that. I don't know why we didn't just do this a week ago when I called and left a message with the times and dates I was available for my next appointment... but whatever. I guess neither of us expected it to be so hard to get in touch.

Part Five: Phone Tag

With the coordinator back from her four-day weekend, today was my first opportunity to call and make arrangements for the next round of testing. As mentioned previously, I can't take my phone into work with me. I also can't make long distance calls from work, unless it's at a pay phone with a calling card. That would be fine... except that I work as a Caricature Artist at a theme park. Using the pay phone there is fine for an emergency, or if you need to remind someone to pick up milk. But I don't really want to have roller coasters and screaming kids as background noise when I'm trying to schedule a doctors appointment.

I left a message for the coordinator this evening... and am hoping I'll be able to duck out of work during lunch tomorrow so that I can speak to her in person and make arrangements for my next appointment.

Hockey Update:

After much deliberation, I decided not to try out for the women's hockey team. While I know there's always the chance that I will not be able to give my dad a kidney... I also hate the idea of committing to a team and then having to back out. The other deciding factor was the cost. $500 to play ice hockey is quite a lot when you are facing time off work for a potential kidney donation.

Part Four: Information and Ice Hockey

Remember how I wrote that the folks in Transplant Services at SLU had left me feeling rather uninformed about the donation process?

Well, information came Thursday in the form of a meaty binder full of pamphlets, business cards, hospital maps, and notes about my specific procedure.



During our initial conversation, the coordinator had mentioned she'd be sending me a "brochure" or something... but I wasn't expecting anything so substantial. I guess under normal circumstances, I would have received this packet before the testing started. But everything has happened so swiftly that my test results beat the packet here.

While I wait for the next step in the testing process, I am proceeding with my life as normal. Tonight, I try out for a St. Louis women's ice hockey team. Although I've been happily playing ice hockey for several years now, I am hesitant to try out for this new team because of the uncertainty surrounding my availability over the next few months. I would hate to have to join the team, then abandon them after surgery.

While I obviously wouldn't be in any condition to play ice hockey in the weeks immediately following a donation, I am unsure about my hockey prospects long after I've recovered. I've read conflicting reports on my ability to play ice hockey after donating a kidney. Many, including one publication that I was provided by SLU, feel that:

It may also be suggested that the donor avoid participating in such activities as football and ice hockey, sports which might injure the one remaining kidney.

I have read others that claim you can do pretty much anything you could do before donating, including play hockey.

Women's Ice Hockey can be rough at times, but it is not a checking sport and the participants are generally well-padded. Injuries can occur in women's ice hockey, just like any other incidental contact sport, but I don't think I'd really rank it up there with tackle football, or a men's checking ice hockey league.

This will definitely be a question I ask when visiting with the SLU staff later. If anyone out there has an opinion or better information about this, please feel free to leave a comment.