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The Donor's Diary
I read a story on CNN earlier today about 32-year-old Todd Krampitz from Houston. Todd was diagnosed with liver cancer a few months ago, and is now staring at the very real possibility of death. As a plea to caring souls, Todd has launched a multimedia campaign to make the Houston area (and now the world, thanks to CNN) aware of his plight. He is hoping for someone to donate a deceased loved one's liver directly to him so that he may receive a transplant sooner rather than later.
The United Network for Organ Sharing (UNOS) is taking exception to these tactics, saying that "public pleas for directed donations run the risk of bypassing the established allocation system".
I can kind of understand UNOS getting upset about this, since their system tries to ensure that the sickest people get organs before the people that aren’t quite so sick. And I understand that UNOS came up with these rules to create a “level playing field”, so that all people waiting on transplants have an equal shot at getting a transplant.
That being said, can you really blame the guy for wanting to live?
Now, this may be an issue that is hard for me to be totally unbiased about. You see, in February of 2004 I underwent surgery to donate a portion of my liver to the husband of a woman with which I work. At the time that I was attempting to do this, I had alternating reactions from people that either believed I was a saint, or that I was clinically insane. But both sets of reactions also ultimately contained the question “why?”.
The man in question was sick with hemochromatosis and hepatitis C (from a blood transfusion after a car accident many years ago). He had been sick enough to not be able to work for nearly three years. He was not allowed to lift anything over ten pounds, and some days was so tired he could not even get up to walk. He had to make regular visits to the hospital to have his body drained of excess fluids that would build up in his body. Since his liver was no longer filtering things out of his system, the fluid would just pile up until the medical staff could drain it out. A week before we went into the hospital for the transplant, he had to go in to have nine liters of fluid drained from his body. Nine liters. Think of four 2-liter soda bottles, filled, and one 2-liter bottle, half filled. Now, try to get your head around the idea of the human body retaining that as excess fluid.
After hearing about his situation, and talking with his wife. I couldn't not do something to help him. So after much debating and discussion with The Wife, The Family, and, finally, myself, I decided to offer a portion of my liver to help save his life.
Until my exposure to the possibility of becoming a living liver donor, I was not even aware that the procedure existed. I knew about living kidney donors, but I was not aware that the procedure could be done with the human liver. Just goes to show, if you're not careful, you'll learn something new every day.
What you are about to read was the journal that I kept about the entire procedure, from initial testing to the final outcome. You may find it interesting, you may find it boring. I hope that, ultimately, you will find it thought-provoking.
My first contact with the transplant coordinator. I called her around 10:00am. We spoke at length about me (age, height, weight, blood type, medical history), and tests and procedures.
First tests will be blood related - I will need to go give a blood sample, and approximately twenty tests will be run on my blood. These tests will determine cell count, clotting, presence of hepatitis or HIV, blood sugar, toxins, etc. I guess that I should cut back on my Goetze's Caramel Cream intake.
Next we discussed the surgery, and the associated incision. The surgery will be abdominal, the incision will be a large trefoil shape, which they refer to as a “Mercedes” incision. Sounds funny now, but won’t be so funny then. This means the same fun that I had with my stomach muscles after my appendectomy, but on a larger scale. You have no idea how much you use your stomach muscles just to do things like standing up straight until those muscles don't work so well. The transplant coordinator did not seem concerned about the scarring from my appendectomy or gall bladder surgery, so I hope that this will not be a problem.
I answered tons of questions about past illnesses (none), if I am on any current medication (none), drug use (none), alcohol consumption (two beers a week), past surgeries (two septoplasties, appendectomy, vasectomy, cholocystectomy (gall bladder removal)), allergies to meds (none), cancer (family history - aunt on mother's side), diabetes (none), job demands (light duty), and what I thought about the latest James Taylor album (not bad, but not as enjoyable as some of his earlier work).
I evidently got the questions right in the Lightning Round, because the transplant coordinator said that she would call me back about setting up an appointment for the blood testing. She would also like for The Wife to come in for the bloodletting appointment. This is presumably to allow The Wife to ask any questions that she might have, and probably to make certain that she knows about this idea. I can only imagine the number of husbands that have forgotten to mention this to their wives ("oh, honey, sorry that I forgot to tell you, but I need you to drive me to the hospital tomorrow. You see, I'm donating a portion of my liver."). The Wife was excited but nervous, which pretty much describes how I feel too.
The transplant coordinator said that she would call me back next week to set up an appointment for the blood testing. I also gave her my cell phone number, so I'll need to make certain that I keep it charged. This is not a call that I want to miss.
I was contacted by the transplant coordinator today. She has spoken with the head of the Transplant Unit. He has given his approval to proceed with testing. The transplant coordinator said that she would check with a scheduler there at the hospital to set up appointments for blood work and MRI scan. It may sound weird, but I find myself giddy with excitement! The appointment should happen sometime the end of next week, or the beginning of the following week (11/23-11/29).
I've collected my medical records from my GP, and they seem to be inclusive of my hospital visits, except for my gall bladder removal surgery (9/3/2003). I called the office of the surgeon that did my gall bladder surgery, and have arranged to pick up those records tomorrow.
After arriving home from work, there was a message on our answering machine from a scheduler at the hospital. Her message said that they had scheduled me for testing December 4,5,8 and 9. That's Thursday, Friday, Monday and Tuesday. I will contact them to see which tests are scheduled on which days.
I received my testing schedule today in the mail. The schedule has already been shifted. My first appointment will be on Dec 1st. I'll be meeting with the psychologist in the morning (8:30) so that she can determine whether I'm mentally prepared to go through with the donation.
Well I went to my appointment with the psychologist, and she determined that I was "mentally competent" and "well adjusted" (her quotes, not mine) and informed, and that she was going to approve that we continue with the donor tests. This was the test that I was most concerned that I could somehow screw up by saying the wrong thing. Well, she was a lot easier to fool than I thought she would be. Yes, that was sarcasm.
The Wife sat in the appointment with me, and we both evidently said all of the right things. The doctor asked me if I heard voices, thought that I was getting special instructions from the TV or radio (good thing she didn't ask about my dog - that might have sunk me), or whether I thought I was a "special person".
“Well, I sometimes feel that I'm pretty good at playing an E minor add 9 chord”.
She clarified that by special, she wanted to know if I thought that I was Jesus or Napoleon. With my long hair I used to look like Jesus, but I never thought that I was Jesus (the glasses kind of ruined the illusion).
“Oh, uh, in that case, no”.
So, she was convinced that I wasn't loony, and that we should proceed. I kind of feel like the most painful test is already done.
Well, I may have been wrong about the most painful test being done. The first medical tests started today. First, I had to give blood for all of the tests that they need to run. I'm not afraid of needles, but given a choice between a needle and an ice cream cone, give me the double scoop. They started with my left arm, inserting one of those thin tubes that terminate in some kind of cap that has a needle in it. This allows them to insert a vial with a rubber cap into the tube, fill the vial, remove the vial and replace it with the next one. I lost count somewhere around vial number twenty-five, and we did plenty more after that. After a while, the blood stopped flowing - it would seem that my blood was clotting in the tube.
I guess the Goetze's Caramel Creams were doing their job.
So, they decided to take the remaining samples out of my right arm. Somewhere around vial number four from the right arm (vial number 30-something altogether, I think), I started to feel “not so good”. I started getting really light-headed. I notified the technician about this. Some nurses scramble, get me a cool cloth, ice for the back of my neck, the whole time continuing with the vials. Evidently you're not done until they get a full quart. Or they just wanted to see how many I could do before passing out. You know, like hazing at college. They wheel me to a bed, have me lay down until my blood pressure returns to normal. Fun!
Next, I have a consultation with the Transplant Coordinator. Nice guy, explains the procedure, lets me ask a lot of questions, and gives me straight answers. Not too many surprises in our conversation. Lots of pleasant talk about how painful this is, possible nerve damage, staples, drainage tubes and other various pleasantries. Things are starting to become more "real" about this whole procedure. Nothing to scare me out of doing this, things are just starting to become a bit more concrete.
Now it's time for the MRI. I'm ushered into a locker room, instructed to take my clothes off, and put on two ultra-sexy hospital gowns (one on front, one on back). I wasn't aware that my body was so hideous that it needed to be covered twice, but whatever. Sit down in the chair and offer up an arm, your choice. Yet another needle - an IV in my left arm. This allows them to run a contrast dye while the test is running. The insides of my arms are starting to look like Swiss cheese with a nice "bruisy" sheen. Then I'm stuffed inside of a tube for 45 minutes, to enjoy the dulcet tones of industrial banging. I think that Nine Inch Nails wrote the soundtrack for this particular ride. This wasn't painful, but extremely disconcerting if you're at all claustrophobic. I'd describe my sensation as "unsettling" with a hint of “I can't wait to get the hell out of here”. I wasn't worried about a cave-in, but not the most pleasant place to be. I had to lie still, and hold my breath a lot while they took lots of photos of my liver.
After the MRI, I chose door number two, winning the opportunity to lay down and have a cold jelly squirted on my belly, while the technician pushes an ultrasound probe into my stomach to find all of my internal organs, and listen for whale song. It would appear that I've got one of everything, and two of some things. All appears normal, although the final decision on compatibility is something that will need to be answered after comparing my anatomy to the recipient, and the rest of my testing. More testing to be done on Monday, 12/8.
This morning I met with the hepatologist to discuss the surgery, family history, drug allergies, etc. He also examined me by pushing around on my stomach, listening to my breathing, just general "checkup" kind of things. He also discussed with me the results of my blood tests, MRI/MRAs and ultrasound tests. He said that everything looks fantastically normal, and that he sees no reason not to proceed with testing. I discussed with him the concern about having the compressed nerves in my arms (side effect due to lengthy surgery with your arms strapped in place). I told him that since my livelihood (computer programming) relied on the use of my hands, that this was a concern. He said that when I speak to the surgeon that we could discuss this issue. So, off to my next test, the Chest X-ray.
Chest X-ray: pretty much a non-event. I leaned against a machine long enough for them to shoot x-rays of my chest and left side. It took all of a minute. Done.
EKG: takes longer to set up for the test than it does to run the test. Adhesive pads were stuck to my legs, shoulders and chest (maybe ten total), you lay on a bed, and they record the electrical impulses of your heart beating. Non-invasive and zero pain, unless you count the chest hair and leg hair that you lose when they remove the pads.
My last appointment of the day was with the social worker. The Wife was there for the meeting, and we discussed our home life, our families, the surgery, how I'll feel after the surgery - the whole ball of wax. The social worker was very attentive and helpful, answered all of our questions, and left us with a sense of comfort. We also had another opportunity to talk to the transplant coordinators, so that The Wife could ask some questions that she had formed. Our big concern about the post-op is whether they will send me home with drainage tubes from my wound. The answer is a definitive "maybe". If I heal quickly enough in the week that I'm in the hospital after surgery, the tubes will be removed before I go home. If I don't heal as quickly, I will go home with tubes. The lousy part of going home with tubes is that they drain. Into a bag. A bag that will have to be emptied. Cocktails anyone?
Arterial Blood Gases test (or ABG to those in the trade) took place at 8:45am. This one was not a lot of fun. The basic deal with the test is that you lay on your back, they take a sample of your blood from an artery and measure oxygen levels in your blood. They then have you breathe pure oxygen for ten minutes, take a second sample of blood from your artery, and compare the oxygen levels to the first sample. This is supposed to give them some kind of idea of how well your body processes oxygen with and without a pure source. This is basically to see if you will stop breathing during the surgery, which would really look bad for their track record.
Now, the things that sucked about this test: First, they could not find an easily accessible artery in my arm, so they used one in my wrist. The needle for the first sample didn't hurt much, at least not any more than any of the other needles that I have been poked with. Now the oxygen: They screw a big padded clamp over your nostrils to keep them closed. Kind of like "Clockwork Orange", except for your nose instead of your eyes. And to keep your nose closed, instead of open. Okay, bad comparison. Never mind.
They then put a tube in your mouth, like a snorkel mouthpiece, with one of those big rubber bladders attached to the side, so that it inflates and deflates as you breathe. The oxygen is so dry that your saliva glands start kicking into high gear, and because you're lying flat on your back, you have to keep swallowing so you don't choke. Not painful, but not extremely pleasant either. You breathe the oxygen for ten minutes while everyone in the room talks about how their weekend was. Except for you, because it's impossible to talk with the "snorkel" in your mouth, and your nose clamped closed.
Now they take the second blood sample. While the nurse promised me that she used the same hole in my wrist, evidently my artery moved since the first sample. Can't say I blame it - if I'm standing in a particular spot, and somebody jabs me with a needle, I'd probably move too.
Well, she didn't know that she had missed the artery at first, so when she started drawing on the needle it was trying to suck “something else” into the needle. Whatever that “something else” was, it hurt. She found the artery on the second try, and took the sample, put a compress on my wrist, and let me go. Next stop, echocardiogram.
The echocardiogram is non-invasive, and not painful. It's basically another sonogram test, but this time on the valves and chambers of your heart. Because your heart is well hidden behind your ribs, getting a good view of your heart can be challenging. This one took a while, but nothing hurt during or afterward.
Today's test is a celiac angiogram. This is a series of x-ray photos of my liver used to determine the arterial and venal anatomy of my liver. The procedure involves putting on a sexy hospital gown (aren’t they all?), lying down on a table, a catheter is run into your femoral artery, and dye is injected into your liver. This allows the x-ray photos to show the veins and arteries in the liver, which I suppose is to allow the surgeon to determine if my liver will match up with the recipient (will tab A fit into slot B). They give you a nice mix of drugs to help you relax and keep the catheter from being too painful. I wound up being unconscious for most of this test. So the test in itself is not that irritating. The most aggravating part of this test is after the test. In order to verify that your femoral artery puncture is going to stay closed (which would cause a life-threatening emergency, not to mention one hell of mess), you have to lie still after the procedure. Flat on your back. For around five to six hours. This is boredom taken to the level of an Olympic sport. But after that time was over, uneventfully, I was allowed to go home. The next day was not so fun for me - you're sore and tired, and you can't lift anything over ten pounds. I was fortunate that my office has an elevator, because you have to stay away from stairs too. As your body heals, it uses a lot of energy, so your energy level and stamina drop. If this is just a taste of how tired I’ll be after the donor surgery, then this will suck.
The call came tonight around 7:30pm. All test results, MRIs, MRAs, sonograms and echocardiograms were reviewed by the surgeon. It is now official: I have been selected as a living liver donor. There will be one more meeting, this time with the surgeon, to discuss the procedure and the associated risks. This should happen next week, after which the surgery will be scheduled.
Well things rarely happen as planned, so we had to wait until today to meet with the surgeon. Our discussion went well, and the surgery is scheduled for 2/9.
2/9/2004 - Day of Surgery:
I went into the hospital on 2/8 to prepare for the surgery. This included drinking a gallon of fluid that was supposed to flush out my system. It tasted like seawater, so that wasn’t too pleasant. I spent the night in the hospital for surgery that was supposed to start around 6:00 am. The surgery was supposed to go by without a hitch. Everyone was supposed to start getting better the next day.
But things rarely happen the way that we want them to happen.
My internal scarring from my previous gall bladder surgery caused complications that the surgeon considered serious enough to halt the surgery. The scar tissue complicated the dissection of my liver, in particular the primary veins and arteries that would be used to transplant the liver to the recipient. So the surgeon called off the surgery, and closed me up.
Of course I had no idea about this for quite some time. I was in surgery for over five hours. My first waking moments were very fragmented. I remember seeing my family members as I was wheeled back to my recovery room. I remember waking a few different times over the next few hours, seeing family members or medical staff, but nothing very coherent.
Much later that day I was able to stay conscious long enough for the surgeon to explain that the surgery did not take place. I was still too drugged to comprehend all of it.
I spent the next six weeks at home recovering from an “incomplete” surgery, while my intended recipient spent six weeks getting sicker. I now own a giant “Mercedes” scar, and, although my swimsuit modeling days were over a long time ago, I would mind it a lot less if I had actually "earned" it.
However, this story does have a good ending. The guy to which I was trying to donate? He got a liver. About a month ago he received a cadaver liver from somebody that was brave and brilliant enough to check the “yes” box on his driving license to indicate that he was an organ donor. He's now recovering, and feeling better than he has in years. They're still regulating his meds, and he will be taking anti-rejection drugs for the rest of his (hopefully long and storied) life. But for him, and his family, that is a very small price to pay.
So when it comes time for you to decide if you want to become an organ donor, remember that when you die, you can still sustain life for someone else.
I've seen it happen.