Part Eighteen: It's GO Time!

GUESS WHO'S GONNA BE A KIDNEY DONOR!?!?!

The kidney transplant coordinator called this morning with the results of my CT scan and to ask a few questions that the hurried kidney doctor neglected to ask.

First of all, I guess the CT scan looked good. The coordinator didn't get into specifics, but I'm assuming I have the appropriate number of kidneys and the usual vein configuration. She said everything looked "normal" and "wonderful".

In her rush, the kidney doctor forgot to ask whether or not my mom was living and healthy, whether or not I had siblings (and if they were healthy), and if any of my family had high blood pressure.

I'm never very good about family history questions. I said there was probably a good chance one or more of my grandparents had high blood pressure... that my mom didn't as far as I knew... and that my brothers were still quite young and had not shown any signs of high blood pressure.

I confirmed that the kidney doctor had given me orders for another creatinine clearance test, that I would be doing the urine collection on Thursday since I was off work that day, and that I would be dropping that off Friday morning. I will also be doing the other smaller urine collection at the office to make up for the "contaminated" sample that I gave on Friday.

The coordinator reminded me that I still needed to have a Pap Smear done before the transplant... and advised that I allow at least a week for the results to come back.

Then she was like, "Okay, when do you want to schedule the transplant for?"

And I was like... "Uhhh...."

She offered a number of dates, "October 11th, 18th, 25th..."

They all seemed sooo soon. I wasn't imagining that it could happen so soon and I was by no means prepared to schedule the transplant.

I said something like, "Well, I don't know what's going on with my dad..."

And she laughed at me. She told me that I was the "main player" and that I was the one who should decide when I wanted to do this.

One of my best friends is getting married in Texas on October 21st... so I picked the 25th as the transplant date. The coordinator seemed anxious to lock in a date and that will give my dad time to get his affairs in order.

Crazy.

Part Seventeen: Hot Flashes

The morning of my final tests started out well, except that I was a little grumpy at the prospect of not eating or drinking until after all of my tests were over.

I made it over the outpatient building promptly at 9 and was whisked through registration and back to the familiar pistachio-green-adult-high-chair and my favorite blood-sucking nurse. I wasn't really sure what lab work needed to be done and was surprised when the nurse stuck me, drew a little blood, and declared me finished. She directed me over to the Doctor's Office Building where I was more than a half hour early for my visit with the doctor.

The DOB seemed pretty nice and fairly efficient at first. When I walked in I was asked to enter my name into a computer and a few seconds later my name was called to be registered again for my next appointment. Then I was pointed down the hall to the Nephrology waiting room, which would become my home for the next two and a half hours.

Now, granted, I was there a half hour early for my appointment... but 10 came.... then 10:15... then 10:30... then 11:00. At that point I was starting to get the Jimmy Leg and was very frustrated that so many people had cycled in and out of the doctors office before my name was called. Fortunately, my mom drove up to St. Louis to accompany me for my tests. This meant that I didn't have to wait alone... but it also meant I had someone who would join me in getting angry when it took so long.

While we were waiting, my little brother called my mom. He passed along a message for me...

"Don't be too worried about the CT scan, I'll be thinking about you today."

At some point after 11:15, a nurse finally came and got me... asked me for a urine sample, weighed me and took my blood pressure. She then put me in a room where I was to wait for a few more minutes. Ten minutes later someone knocked on the door but it wasn't the doctor... instead it was another nurse informing me that I would have to go back out into the waiting room and wait some more. Another ten minutes passed and I was called back in... this time to wait in a makeshift exam room that appeared to be more of a storage area for medical equipment. At this point I was so tired of sitting and waiting that I got up and wandered about the room. Eventually, the doctor came in looking very hurried.

She rushed through the paperwork and questions... asking things that she should already know... like why my dad's kidneys failed (Like I know), how long had he been on dialysis (I could only give a guess), and did I still live with my folks... to which I answered, "No. I don't live with my parents. If I did, I would probably be more capable of answering all of your questions."

She also asked me a bunch of questions about my own health which I've already answered a few times before. Then she told me that the urine sample I gave today had something wrong with it... something to do with white blood cells, which could indicate infection. But she acknowledged that it could be contamination from the vagina (I have been feeling a tad itchy down there lately) and that I could redo that sample later.

She also asked me some questions about the 24-hour urine collection I had turned in before. She was curious as to whether or not I was sure that I got all of the urine for that period. Except for the few drops that got lost when I fished out the cat hair, I was pretty sure that I had. She then told me her reason for concern... apparently something to do with my creatinine levels were slightly inconsistent for my age and weight or whatever. She said they fell within the range of deviation and were probably fine, but just wanted me to do another 24-hour urine collection to make sure. Then she signed off on my CT scan (which I was now late for), and sent me on my way.

My mom and I trudged back to the outpatient building and then were escorted up to the CT area with my favorite blood-sucking nurse. After a short wait, I was greeting by the friendly gentleman who would be administering the CT scan. He had me go to the bathroom to empty my bladder. Then I went into the room with the machine which looked like a giant donut. For some reason it made me think of Homer Simpson.

"Mmmmm... Donut."

I was instructed to lay down on the table with my feet hanging off the edge. The guy brought super warm blankets to place on me and they were all comfy like they were straight out of the dryer. Then he told me that I should reach under the blanket and pull my "britches" down to my knees so that they wouldn't interfere with the scan. I was able to keep my underwear on.

Then another guy came in to put an IV in me for the dye. I've never had an IV before and it was kind of weird. It hurt a little bit when he stuck it in me and then I had a salty taste in my mouth which the IV man said was from the saline. The two of them gave me the lowdown on the stuff they were going to inject into me. I was told that I would get a metallic taste in my mouth, that it would make me feel like I was having a hot flash, and that I might also feel like I was wetting myself... but not to worry because I really wasn't.

Then they said that I would probably need to go to the bathroom right after to help get the stuff out of my system.

After the IV was in, I had to put both arms above my head and they ran me back and forth through the donut a few times. I was kind of concerned because I didn't feel hot or a metallic taste or like I had to pee.

Then the guy came back out and said that he was going to start the IV now... which probably explained why I wasn't experiencing any of the side effects yet. So he started it and first I felt a tickle in my throat and then I just felt awful. I can't even explain it... the taste wasn't so bad. It was the heat... ugh... so frickin' hot all over my body... just burning like I was on fire... and I was cursing myself for wearing smart-wool socks today... and cursing the guy for putting those dryer-hot blankets on me. My feet were so hot and my crotch felt funny too. I don't know if I'd liken it to the feeling of wetting oneself... but it was definitely different. This whole experience didn't last very long... thirty seconds, maybe a minute at most. All the while I was having to breath in and hold my breath as I was passed in and out of the giant donut. Then the guy rushed out and took out my IV and the feeling went away. Blech.

After a five minute delay, he passed me through the machine a few more times and then we were done. Altogether it probably only took ten minutes and then I was out of there.

The guy told me five times to make sure to pee, so I did as soon as I left, afraid something awful might happen. Then my mom and I stopped at the outpatient office again to pick up the supplies for my second 24-hour urine collection. This time I got an official container and a little hat to pee into, which really does look like a hat.

I'm not sure when I'll hear the final results from these tests but judging from the previous ones it will probably be a few days. Before I can go any further, I will have to do the next pee collection and also have a gynecological exam and a pap smear at some point.

If all this works out, we're looking at maybe the beginning of November for the transplant. *sigh*

Part Sixteen: We've Gotta Stop Meeting Like This

Monday morning I got a call from my mom informing me that they were in town... at the hospital.

Apparently, on the way to church Sunday, my Dad noticed a small wet spot on his dress shirt near where his dialysis "port" is. As the day went on, the spot grew larger and larger... until the front his shirt was almost completely soaked. It was obvious that he was somehow leaking out of his port area. Not good.

As I've mentioned before, my dad does Peritoneal Dialysis at home every night. This differs from hemodialysis, which is the more common type of dialysis. With hemodialysis, your blood is circulated through a machine with a filter which removes all of the bad stuff. Then the clean blood goes back into your body.

With PD, a big bag of dialysis solution is put into the body through a catheter that is permanently fixed into your abdominal cavity. The solution contains dextrose which pulls waste products and extra fluid into the cavity. The solution stays in your body for a while and then is drained out (along with all the bad stuff).

Because there is a catheter that goes into my dad's stomach, he has to be extra careful about getting infections. You can imagine how frightening it might be to find out you have a crack in your tube. Because if stuff can come out, that means stuff can also go in.



My dad called up his kidney doctor who advised he go to the emergency room. The ER people scratched their heads and he eventually got admitted late late Sunday night/Monday morning. They did a CAT scan to make sure that his catheter was not damaged on the inside. Then they attempted to repair the outer portion of his tube which had a small crack in it.

Throughout the day Monday and Tuesday, the checked my dad for infection and loaded him up on antibiotics. They're still not sure if the tube repair solved the problem... but for the time being, my dad is grateful that he doesn't have to have the catheter completely replaced.

Replacement would require surgery and missing 2-3 weeks of work. With the prospect of getting a new kidney soon (thereby negating any need for a dialysis catheter), my dad is hesitant to have a brand new catheter installed unless absolutely necessary.

He was let out of the hospital Tuesday afternoon and the last I heard, was trying to get in to the dentist while he was in town. He has to get a few fillings before he can get the kidney transplant. I guess they want his teeth taken care of to help minimize the risk of infections during the transplant.

Just a few more days now until my final tests and meeting with the Kidney Doctor. My dad said he had spoken to one of the coordinators, who indicated that it could be another 4-6 weeks after I finish testing before the transplant could be scheduled. That puts us somewhere around the end of October or beginning of November.

Hopefully on Friday I wont find out that I only have one kidney.

Part Fifteen: Schedule of Appointments

At some point last week I received a schedule of my appointments for September 15th. It goes a little something like this:

9AM - Tenetcare - Register and lab work (in preparation for the CT angiogram).

10AM - Meet with Dr. at the Doctors Office Building

NOON - CT angiogram of the abdomen IF Dr. APPROVES YOU TO HAVE THE CT ANGIOGRAM. Do not eat or drink for 6 hours before the CT angiogram.



So for those of you who don't already know (and because I'm sooo super knowledgeable about these things), "CT (computed tomography) angiography (CTA) is an examination that uses x-rays to visualize blood flow in arterial and venous vessels throughout the body, from arteries serving the brain to those bringing blood to the lungs, kidneys, and arms and legs. CT combines the use of x-rays with computerized analysis of the images. Beams of x-rays are passed from a rotating device through the area of interest in the patient's body from several different angles to create cross-sectional images, which then are assembled by computer into a three-dimensional picture of the area being studied."

Okay.. I totally borrowed that from somewhere.

Here is more kidney specific information about the test from the donor packet I was given earlier:

"This final evaluation test tells us that you have two kidneys, shows us exactly where your kidneys and where the blood vessels that supply blood to the kidneys are located. Though most people have one artery and vein per kidney, about 20% of the population has more than one. This information is very important in determining which kidney to use from the donor. Very rarely, we may find that both kidneys have multiple arteries that may make the donor operation too risky for the donor, or the multiple arteries are so small that the chance of clotting in the recipient is so high that the surgeon does not feel that the surgery can be safely done. In this case, the donation cannot take place."

Part Fourteen: Do Do Do Do Do Do Do Do... CAT SCAN!

I got a hurried call from the kidney transplant coordinator this morning informing me that I was scheduled for my next test the morning of Friday, September 15th. Apparently that's the earliest they could get me in... but that's fine. It's just a couple of weeks away.

I'm supposed to be receiving a letter from the transplant office letting me know the details of the visit. Hooray!

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!!!!