Part Twenty Eight: Bath Tubes and Hospital Food

I spent a little time this morning getting ready for my weekend trip to Texas and then headed over to the outpatient clinic a little before noon.

The regular desk guys were out to lunch when I arrived and as a result, I didn't get my normal quick service. First, they seemed confused and couldn't find my file. Then they thought they found it and told me to have a seat until someone could register me. Meanwhile, my dad walks in and up to the front desk. They fumble for his paperwork and then realize that the name sounds familiar. The desk guy's eyes scan the room and land on me.. "Didn't we just check someone else in with that name??" My dad gestures to me and says I'm his daughter. He's checked in at that time and given a wristband and told to wait to go back.

Meanwhile, I still have no wristband and am still not officially registered. I know the routine and know that this is out of the ordinary. I saunter up to the desk and inquire as to whether or not I'll be getting a wrist band today.

The guy looks at me blankly. "Are you having something done today too?"

Despite the fact that I've already indicated that I am there for preadmission testing for a kidney donation, he still questions me. Like I could somehow be unclear about why I am there.

Eventually, they get it figured out. Khristy, my favorite blood-sucking nurse, comes and fetches my dad and tells me to come on back whenever they finish with my paperwork.

By this time, my dad has already given his blood samples and is in the process of getting his EKG. I am already hopped up into the pistachio green adult high chair when they emerge from behind the curtain. Khristy remembers that she bruised me before and used a nice small needle. She needed at least five or six tubes of blood today and as the first sample comes out I think that it really looks a lot like chocolate syrup.

K next hands me a urine cup and points to the restroom. My dad wonders out loud why he didn't have to give a pee sample too. Khristy remarks, "Well, we already KNOW what kind of sample we're going to get from YOU!"

After peeing into the cup I came strutting out of the bathroom and plunked it down on the counter proudly. "See there!" I said to my dad, "Now THAT'S quality right there. That's what you have to look forward to!"

We go in the back for the EKG and I realize that I'm wearing one of the tightest shirts that I own. It makes it hard for Khristy to maneuver around and stick things under my shirt but she manages and after some readjustments, is eventually able to get a good reading for me.

While we're doing my EKG, the x-ray technician comes to get my dad and eventually I join him down the hall to get chest x-rays. This time, I was able to see my x-rays pop up on a monitor after they processed and it was pretty cool! My breasts looked incredibly perky in the side shot.... and my heart looked bigger than I expected.

I thought we were finished at that point, but we were next directed into a little exam room to meet with the Anesthesiologist who was a super nice younger lady. A nurse asked if we had eaten yet and we were each given a little container of hospital food. It contained an apple juice, apple sauce, cookies and a cold moist turkey sandwich. We nibbled away while discussing what to expect on the morning of surgery. The doctor asked if we had any questions and I came up blank. My dad said, "Amanda just wants to know if she's going to be able to watch the World Series that night in the hospital with me." The doctor smiled and said, "I sure hope you'll be able to watch the Cardinals play. And if you're feeling okay, I don't see any reason why you won't be able to go in and visit with your dad some that night."

The next stop was the Doctors Office Building to meet with the transplant team. I wasn't expecting any more physical exams, but when we got there, we were almost immediately whisked away to separate exam rooms for more inspection. After getting our vitals checked, I waited alone in a little room for at least an hour and a half before anyone acknowledged me. A physicians assistant came in and did a brief exam, feeling my abdomen and throat and groin and breasts. After a quick question and answer session I was asked to sign a consent form for the surgery.

A few minutes later, one of the surgeons came in to talk with me about the operation. From what I had been told, this was not the surgeon that would be performing my surgery, but he had been following my case from day one and told me, in his thick accent, that I was one of the healthiest patients he had ever had come through the evaluation process. We talked about the risks and the things I would need to do after surgery. At one point he was saying that I wouldn't be able to take a bath for a while and he said that I would not be able to get in "the bath tube." I was momentarily confused but then realized he was referring to the bath tub.

I'm feeling less anxious today than I was yesterday and am once again thankful for the distraction of this wedding weekend. It also helps that the Cardinals won game 7 of the NLCS tonight to make it to the World Series once again. Although I probably won't be able to make it to a WS game this year, I think it will be even more rewarding to watch the World Series on hospital TV with my dad and his new kidney.

Part Twenty Seven: Knockout

Sorry for the lack of updates... but really all I've been doing is a whole lot of waiting and worrying.

Still no word from the gynecologist... which is good. No news is good news. I just hope that she remembers to fax my results over to the transplant coordinator.

I got a call today from the Anesthesiologist at SLU. They asked me a bunch of questions about my health... and I always feel like a broken record.

"No, no, no, no, no, no, no, no..."

And then when I finally get a questions that I can say YES to... I get SO excited. As in:

"Do you have any caps, crowns, or dentures?"

YES YES YES YES! Oh thank God! YES! I have crowns! This is fantastic!

After the Yes/No session I was given further instructions for the day of the surgery.

The main things I need to know:

1) No food or drink after midnight.

2) No nail polish or contact lenses (not applicable but still interesting)

3) Wear lose fitting clothes.

4) Do not bring any valuables. Just an ID, insurance card, and medical directive

5) I can bring one person with me and that person can stay with me until I go in for surgery.

I was shaking when I got off the phone with the nurse. A letter with instructions is one thing... being given instructions over the phone is another. When I finally meet with the surgeons tomorrow and am given instructions in person, I might puke.

I guess it's normal to be worried. For the first time since this process started, I had a dream about the surgery. I woke up crying.

Tomorrow morning I go in for the final tests and meetings before the big day. My sense of excitement is shifting to a sense of just wanting to get all of this over with.

As is often the case when I get stressed out, my face is breaking out. When I get nervous I start to pick at my face. I need a pair of mittens to keep my hands off my face.

Luckily I have the excitement/distraction of baseball. The Cardinals can clinch a trip to the World Series tonight. If they make it to the WS, the St. Louis home games would fall during my stay at the hospital. Whoever would've thought I'd have a legitimate excuse to lay around and watch baseball in bed? GO CARDS!

Part Twenty Six: Two Weeks

I've been thinking a lot about hospitals lately.
I've never really had to go to the doctor or hospital (for myself) before this year.

My older brother has asthma, and at an early age landed himself in the hospital where he had to be in a little tent. I remember visiting him there. We took him a NERF football. I couldn't have been very old... but I remember that.

My little brother was a bit more accident prone... his favorite place to end up is in the ER. One time he fell onto a broken lightbulb and cut his knee open pretty bad. I'll never forget the sight of that open wound... the gleaming white fat bobbing in a pool of blood. It made me want to throw up.

Although my dad had been in the hospital a number of times for one reason or another, the scariest stay he had was during his double bypass heart surgery (in his late 40's). He looked pretty bad afterward. It was after that surgery that they figured out that his kidneys were failing and had contributed to his heart problems.

The closest thing I've ever had to surgery was getting my wisdom teeth removed. Luckily, I only had wisdom teeth on the top... so it wasn't so bad. They knocked me out for the extraction. And that was the weirdest thing ever. I went into a room, got up on a table, had a mask put on me and a shot in the arm... and then they told me to count backwards... and the next thing I knew I was in a completely different room, with gauze in my mouth, and no more wisdom teeth.

Since I decided to donate a kidney to my dad, I've been trying to imagine the surgery day. But I really don't know how you can imagine having an organ removed. It's one of those things that you won't really know what to expect until it's already done. The doctors can tell me over and over what's going to happen...and the nurses can tell me how bad I'll feel... But until it's done... it's all just a blur in my head.

I don't like the idea of hurting... but I know that it is only temporary.

My friend, nurse Megan, tells me the worst part will be the gas pains. They have to blow air into you during the surgery to make a little extra room to maneuver around. Megan says the only way to get it out is to fart or to get up and walk around.

My friends Heather and Sarah said that the worst part will be my organs shifting when I stand up. Megan says that is crazy talk. But it's still creepy to think about.

I'm starting to worry that something weird will happen... I don't want to be the one out of a thousand that has some stupid side effect.

In the meantime, I'm still working my two jobs... watching lots and lots of Cardinals baseball (GO CARDS!)... and going to a wedding in Texas the weekend before the surgery. I don't wanna have much time to think about things. I just want to get it over with.

Everything will be fine.
Just two more weeks...

Part Twenty Five: Itchy Insides

For those of you out there who have never had (or never will have) the excitement of going to the gynecologist, let me tell you... it's a blast. In keeping with the tradition of telling you more than you ever needed to know... I'm gonna tell you more than you ever needed to know. (Just in case there's someone out there that DOES need to know.)

Really, it's not that bad... but there's something kind of daunting about it. It's one thing for a doctor to stick their hand up your shirt to listen to your heart with a stethoscope, but it's another thing completely to have a doctor examining your exposed breasts or putting your feet in stirrups, scooting your bare butt up to the edge of a table and allowing a complete stranger to look into what my friend Megan Page likes to call the "cooter".

My trip to the doctor this morning went a lot better than the last one. This time I was prepared with my complete insurance information, although I still have been unable to obtain a temporary ID card. Within minutes of my arrival I was whisked away to get measured (5'2" tall) and weighed (124 lbs). The nurse then took me into the exam room and she took my blood pressure (which was "good"), and gave me instructions for the gown and the sheet (gown open in the front, sheet over the legs).

Before I got undressed, I was led across the hall to meet with my new doctor in her office. Dr. M is a recent addition to the women's clinic I went to. She recently finished up her residency at Barnes Jewish Hospital in St. Louis and as expected she was young and pretty and looked smart in her little white doctor's coat. She kept calling me "darling"... but not in a snobby international sort of way. More like a friendly southern "darlin'". This made me feel good but also weirded me out a little bit because she didn't seem much older than me.

The doctor and I discussed my medical history and family history and the reason for my visit. She promised she would send my test results over to the coordinator as soon as they came in and she commended me for my attempt to donate a kidney. She also said that I was the "picture of good health" or something... which I guess I kind of already knew after two months of evaluations for the donation. But I still expressed the appropriate gratitude for her saying so.

Our discussion was short and we trudged back across the hall to the exam room where I was given a minute to undress and get my naked butt on the table. I always find that the gowns are way too big on me and with the opening in the front, they did very little to hide my private parts. I was just getting ready to put the sheet over my legs when the doctor knocked on the door and asked if I was ready. I wasn't really ready... but figured she was about to stick her hand up my "private no-no spot" anyway so it probably really didn't matter if I exposed myself to her.

The actual exam was pretty quick once she got started. She first examined each breast while I was in a sitting position, and then had me lay down and felt around a little bit more. She encouraged me to do monthly self-exams and explained how to do that (which I have already heard a million times... but appreciated nonetheless). Next she whipped out the little stirrups, had me scoot up to the edge of the table. She was talking to me about my job at Six Flags as she worked... and before I knew it she had stuck the speculum "down there" and was scraping away at my insides for the Pap Smear. She also pressed around on my pelvis some and looked around for a bit... then it was done. It probably only took five minutes.

As far as results go, she said that "no news is good news" and promised to have the results faxed over to the kidney transplant coordinator in 7-10 days.

So I guess that's pretty much it until my dad and I go in for the final crossmatch on the 19th. That's only a week and a half away which is both frightening and exciting.

Organ Donation. It's the LIFE thing to do.

I generally have about a half hour commute to work, which allows me plenty of time to enjoy bad talk radio and the billboards plastered all over the Missouri highways.

Over the summer, I was bombarded with images and radio spots from Mid-America Transplant Services.

I didn't mind the billboards so much. You can see all of them here. Billboards are nice silent reminders that can make a big impact with a mere five seconds of your time.

But it is the David Eckstein radio ad that is about to drive me nuts.



Perhaps you haven't heard the story of David Eckstein, the St. Louis Cardinals baseball player whose family has been rocked by kidney disease. If you would like to read more about the Eckstein family, here is an article.

It's a touching story and they were able to make it into a stirring radio ad. I think I might have even been moved the first time I heard it. But I swear they run this ad every break during the cardinals game and every half hour on non-game days.

It's remarkable that MTS-STL has been able to run such a huge advertising campaign and I really hope that people are moved to donate their organs.

But if I have to listen to that David Eckstein ad one more time... I might change my mind about donating... just to spite MTS.

If you're not in the St. Louis area and would like to hear the ad, click here. But don't say I didn't warn you.

Part Twenty Four: Doctors Office Disaster

One of the things I was asked earlier on in the donation evaluation process was when my last Pap Smear was. I replied honestly that it had been more than a year, and the coordinator told me that I'd have to have another one done before I could donate.

Now it would seem to me that since my dad's insurance is covering all the blood work and EKGs and X-Rays and CAT Scans and whatever else... that they would also be able to cover this pelvic exam and Pap Smear that they seem to think they need. But apparently, the responsibility for those tests fall on my shoulders.

My last health insurance policy expired at the end of August and my new one didn't start until October 1st. So I had to wait a little while until I could go in for the aforementioned exams. At the coordinator's urging, I went ahead and scheduled the appointment early, so that I would be sure to get into the doctor as soon as my insurance policy went into effect.

That plan backfired on me this morning when I rolled into the Gynecologist's office for my early appointment. The receptionist requested my insurance card. I told her I didn't have one yet. She gave me a disgusted look and shook her head as if there was nothing to be done. I pointed to my new patient paperwork which had most of the information I figured she'd need... group number... social security number... And she eased up a little bit. She said she'd check with the secretary.

I sat down to fill out my privacy notice and was called back to the window a minute later. The secretary barked that they would be able to get by with only the SS number (as opposed to the member number)... but that they couldn't do anything without the claims address.

The claims address!?!? Come on people.

My policy isn't with some backwoods insurance provider. It's a pretty major company. If you don't already have the address on file, can't you make a phone call or check online and find it?!?!? Why are these people thinking I'm trying to scam a Pap Smear out of them? Trust me, I've got better things to do with my time. There's a reason it's been a year and a half since the last one.

Anyway... now I've got three ladies shaking their heads at me. They tell me that I'll have to "call someone". At this point, I'm in near tears and I do the only thing I know to do, which is to call my friend Suzi (who happened to be the one who referred me to this particular doctors office).

Suzi calmed me down by making a few phone calls and by muttering obscenities about every single person she contacted in her mission to find the claims address ("That receptionist is a whore..."). Eventually she got through to the insurance company for me, only to have them tell her that they did not have my policy in their system yet... and as a result, were unable to give her the claims address.

After about an hour in the waiting room, I accepted the defeat and trudged back up to the window to reschedule the appointment.

At this point, the receptionist leaned in across the window and whispered:

"Did you have a medical issue... or were you just here for an annual exam?"

I was shocked by her sudden compassionate facade and couldn't help but shout at her so that everyone in the office could hear, "I AM SUPPOSED TO BE DONATING A KIDNEY TO MY FATHER ON OCTOBER 25TH! THEY ARE MAKING ME HAVE THIS DONE BEFORE I CAN DONATE."

Apparently, the impending kidney donation wasn't deemed as important as if I had crabs or something... so the receptionist kindly rescheduled my appointment for next week. As she typed my appointment information into her computer she mused to herself, "Hmmm... I guess we could've looked that address up on the net."

DO YA THINK!?!?!

Part Twenty Three: Dial?!?

This morning I got a call from the Transplant Coordinator. As usual, she seemed in a rush and spoke to me much like she would if she was leaving me voicemail. Apparently, she was just calling to let me know that my second 24-Hour collection was fine.

That's good to know. Now the only thing standing between me and surgery is my girl exam and pap smear next Monday. This would be the perfect point for me to find out I have a lump in my breast or cervical cancer or something.

Assuming, my girl parts are all clear... we'll be ready to go with the surgery on the 25th of October. I got a letter from the Abdominal Organ Transplant office yesterday with the details:


Dear Amanda:

This letter will outline the events leading up to your kidney donation on 10/25/06 at 9:15 AM. You will be admitted the day of surgery; report to the Ambulatory Care Unit (ACU), on the third floor of the hospital at 6:00 AM.

- Arrive at Tenetcare on 10/19/06 at Noon for preadmission testing; labs including a final crossmatch, Chest X-Ray, and EKG.

- Transplant Clinic Visit at the Doctors Office Building (DOB) is scheduled for 10/19/06 at 2:00 PM. Register by the Pharmacy on the first floor of the DOB, the go to Room 108 to be seen by the transplant surgery team.

- The day before surgery, 10/24/06, you will require a bowel preparation. Ask for a prescription for Go Litely while you are at the clinic.

- After Midnight prior to your surgery have nothing to eat or drink.

- Before arriving at the hospital the morning of surgery, shampoo your hair and shower using antibacterial liquid soap such as Dial. Be sure to scrub your abdomen, chest and back well. After showering, do not use any deodorants, lotions, perfumes, or powders.

- On 10/25/06 bring the following items with you: insurance card and medications. Do NOT bring valuables such as money, credit cards, jewelry, etc.

If you have any questions, please call the office....


Up until this point, this surgery has been so unreal to me. But when someone starts telling you to shampoo and shower with Dial antibacterial liquid soap... you know you're in trouble.

Part Twenty Two: Big To Do

Checklist of Things to Do

1. Order Living Will and Durable Power of Attorney

2. Make appointment for Exam and Pap Smear

3. Tell Part-Time Boss about Potential Kidney Donation

A week or so ago, I was lamenting about the stress of having to tell my part-time employer about the kidney donation and time needed off work. My older brother remarked that Organ Donation was shown to be one of the hardest things to approach your boss about... second only to asking your boss for a raise.

I sensed a bit of sarcasm in my brother's voice at the time and laughed at his little statistic. But really, I'm starting to think that it could totally be true.

Part of it is just me and part of it is just the situation.

I've always been bad about telling people things potentially unnerving things... especially when I wait too long to do it.

And then you add that to the fact that I applied for this job after I was more than halfway through the donor evaluation process. I already knew there was a good chance that I could be donating. But I didn't mention it to my boss because I didn't want it to affect his decision for hiring me. And now that this donation is becoming more and more of a reality, I am starting to feel dishonest for keeping it from him.

Either way, I've gotta tell him soon. Although I'm just working part time, he is giving me more and more responsibility. With the upcoming holiday season, I don't want to leave him in a bind.

I think today is going to be the day, kids. Stay tuned for an update.

UPDATE
I did it! I did it! I did it!

I was trying to work up the courage to call my boss and staring blankly at the computer screen. I went to a kidney donor website and read some experiences from living donors. Those things are always so encouraging. I like to read how much better off the recipients are after the transplant and how the donors always say that it was totally worth it. After scanning a few pages of these I remembered how much I really want to do this for my dad. I picked up the phone... dialed the store number... and got the ANSWERING MACHINE! *grumble*

My boss called back a few minutes later and I gave him the news.

It's funny how sometimes you don't realize how much something is weighing on you until you get it off your chest.

As one probably could have expected, my boss was incredibly understanding. After listening to me rambling on about the surgery, he began by commending me for doing this for my dad. He told me that it shouldn't be a problem, that I've been doing an incredible job in the short time that I've been there, and that he is more than willing to work with me on this if I am willing to stay on.

I'm glad to get that over with... It was really one of the last big hurdles for me. Now we can begin our countdown to D-Day with everybody on board!

Part Twenty One: A Few More Weeks

This morning I got up, finished my 24-hour collection and then made my way over to the outpatient office to make the drop-off. It is days like this that I am grateful for living only a mile or so from the hospital.

At this point, all of the front desk people recognize me. They still have to go through the long drawn out process of "registering" me every time I go in. They ask me what my dad's birthday is... is he still working full time... am I the donor or the recipient. I have become somewhat frustrated with their crappy records system and hope that most of the problems that I have been having are related to the fact that my records seem to be kept under my dad's name.

In order to bill the charges to my dad's insurance, they have to put me in through his records. I'd like to think that if I were an actual patient, they wouldn't need to ask me the same questions over and over and over again. But who knows...

As usual, I was registered right away and only had a thirty second wait before my favorite blood sucking nurse came down the hall to get me. (I tried to pay attention to her name today... I think it was Krista.) At this point, I knew the routine pretty well. She handed me a cup and a disinfecting wipe for my private parts. I provided a glorious urine sample. She stuck my arm, drew a little blood, and I was out the door.

The next time I will see her will be a couple of days before the surgery. My dad and I will have to go in and have more bloodwork and EKGs and chest x-rays and stuff done to make sure we're still okay for surgery.

As I left, she said... "See you in a few weeks."

That was kind of scary.

Part Twenty: Suck Me Dry

The coordinator seems to be anxious for me to get that second 24-Hour Urine Collection done, so I decided that today would be the day. I do have to work this afternoon for 5 hours, but I'm hoping by some miracle that I won't have to pee while I'm at work. Just in case, I'll throw my jug in the car... but how embarassing! ("Don't mind me boss... just going in back to collect a little urine. Do you mind if I set my jug here on the counter?")

Meanwhile, I also had to schedule an in-home physical for the purposes of my life insurance policy. It was supposed to have been done a few weeks ago, but there was a mix up with scheduling. My insurance agent has been pulling his hair out trying to get me in touch with the traveling nurse for an appointment. So finally I was able to schedule the physical for this morning.

At some point I realized that I would need to provide a urine sample for the physical. Not normally a problem... except when you're supposed to be collecting a giant jug of urine for other purposes.

So here was the plan:

The 24-Hour test requires that you flush your first pee of the day, so that you can start the test with an empty bladder. Well, instead of going to the bathroom right away when I got up, I saved my pee for the physical sample... emptied my bladder and marked that time as the beginning of my 24-hour test.

*shooo*

In addition to peeing for the physical, I also had to give a few tubes of blood. The nurse had little luck with my left arm and had to redo it on the right one. I was trying to avoid my right arm, because I still have a big ol' bruise from my last trip to the outpatient office.

In my previous 27 years of life, I had only had blood drawn once. Now, in the past couple of months I've been getting stuck left and right. Between the pee and the blood (and the kidney)... I think they're gonna suck me dry.