Thrive Short Story: The Club I Never Wanted to Join
This is a true account was submitted to Thrive Detroit for publication. The writer would like to remain anonymous.
Before I became a member of what I call “the club I never wanted to join,” I was a proponent of organ donation and let my wishes be known. But unexpectedly, I became somewhat of an expert on the topic, and I hope my story will encourage people to sign up. In fact, make it a resolution for 2014 (the easiest you’ll make): https://services.sos.state.mi.us/OrganDonor/Pages/Registry.aspx. Filling out this short form is the only official way to join the registry of willing donors, and it’s vital.
As for that club? Yes, I’m grateful to be a transplant recipient—it saves lives, and medical science is amazing. My story is unusual, because I wasn’t sick for years or on a waiting list, so though my transplant saved my life, it did not improve my life as it often does for recipients, because until about 10 days before another person’s liver was transplanted into my body, I was healthy and normal. But whether someone waits for four years for a matching donor or needs one in an emergency situation such as mine, the need continues to be great.
A virus caused my liver failure—a strong strain of one belonging to the Epstein Barr family. On September 26, 2013, I celebrated my second annual “liver-versary.” It’s been a long road, but the only reason I have been able to travel it is because of a generous stranger (and great medical care, of course).
I was in Niagara-on-the-Lake, Ontario with a friend for a long weekend of theater at the Shaw Festival, staying in a lovely B&B, seeing several plays, touring wineries, and biking the Niagara parkway trail. We were going to try to ride all the way to the falls that Sunday. We didn’t make it.
A few days before had we left, my urine had turned brown and I ignored it—didn’t even go on the web to research symptoms. I’ve read that women, especially busy women, tend to ignore our medical symptoms and go on about our days. So off I went to Canada. I remember my friend constantly turning her head while we were biking to make sure I was still behind her on the trail—I had complained of being tried, but of course we still went biking that day. And though we didn’t make it to the falls, we did about 20 miles. That evening at dinner, she caught the first glimpse of my yellow eyes. This was Sunday evening, and we were scheduled to go home the next day. Coincidently, my parents were in town that same weekend, and we’d had dinner with them Friday night, when I was still feeling relatively okay. I have had surgery on my back twice, and on both eyes, so I tend to have a high tolerance for medical issues. The next morning, I did not feel like eating the lovely breakfast our hosts prepared (which means something is serious!). My friend and I had driven separately because she had to get home early, and I enjoy that town so much, so I was stubborn and didn’t want to leave early.
The drive home consisted of a fatigue so great that I had to slap myself in the face constantly to stay awake. I should’ve called someone, but visions of making it home kept me going. At the border, I got stopped for a random bomb check—meaning, they impound your car and you wait a half hour along with several others. I did not fight it, but I remember another woman arguing with the border agents. I think all the fight had left my body and I stood in the rain, feeling like I might collapse. The border patrol is obviously not very well trained to recognize symptoms of medical issues, because by this point, the yellow of my eyes and skin was pretty obvious, and I must’ve been quite a sight. Looking back, I’m glad they didn’t question it, because I might have been quarantined.
I made it home, miraculously. The next morning, I went to work, but called my physician immediately, and she agreed to see me at noon. She ran a hepatitis test, but the rest of the lab tests had to be sent out. This was a Tuesday. I can’t believe it now, but I went to work on Wednesday. On Thursday, I called her, very concerned about how I was feeling. She had never indicated what she thought it might be, and she told me to just go to the emergency room because the results weren’t back yet. I have been meaning to file an official complaint about her. The emergency room visit should’ve been on Tuesday, but she showed no sign of alarm. Once I got to the emergency room, it was a different story.
My mother was with me, and my father joined a bit later. The attending ER doctor had tests taken and came back soon after that with a declaration (delivered without an ounce of feeling). I’ll never forget it and neither will my parents. “We’re going to have to transfer you, because we don’t do liver transplants here.” What? In his defense, I suppose he must’ve thought that I had some idea about what was going on, but this was the first time we’d heard the words “liver problem,” let alone “transplant.” I remember not being all that upset about it, and my parents, if they were, didn’t show it. I think we just didn’t believe him. He wanted me to go to Henry Ford, because his hospital was “affiliated with them,” but my mother insisted on the University of Michigan Hospital (she has a friend who worked there—certainly Henry Ford could’ve provided good care as well). He called and said they didn’t have any beds, and I remember my mother almost laughing at that, and stating that we’d go there anyway. An ambulance was called.
I was not panicked. I remember that the EMT guys were very kind and that the ride was bumpy thanks to the Michigan roads. Now I know that I had a sense of peace about what was happening because my entire body was shutting down. This was Thursday evening.
I don’t remember much of the weekend because of the sense of peace that dying apparently brings, but my family does. Apparently my mom got a laptop for me to borrow so I could send e-mail and use Facebook on Friday, and I did, but I don’t remember any of that correspondence (it was spooky to go back and see the evidence later). Saturday, my sister helped me shower because I was complaining of being dirty, but I have zero recollection of that. By Saturday night, I was convulsing, an image my sister says she’ll never forget, and then I entered into a comatose state. My family and friends were terrified and sad, and I was just out. I don’t remember anyone asking me any questions or telling me that I was on any list. My family took over and I just floated.
My father took notes the entire time, and though I’ve listened to everyone’s oral version of the story, I can’t bring myself to read his “journal,” but I need to. It’s always hard for me to hear how they all suffered. If I had to go through this, my quick and dirty way was probably the best. By Monday, my sister’s minister (and mine from the church where I grew up) had visited my family, and though they would never say it, I think they were preparing for me to die. Actually, my brother did finally admit to that. Apparently an initial liver had come in first, but my surgeon had rejected it—this all came out in bits and pieces in the months after. My brother, sister, mom, dad, cousins, and friends were doing a prayer circle on Monday, and after they had finished, the doctors came in to tell them that they had a liver for me that was a match. My sister, who is still religious (I am not), swears this was the answer to the prayer, and I don’t argue with her.
What followed were hours of surgery, ICU recovery, a big open wound in the shape of an L, drugs galore, and rehabilitation. Several days were spent in the hospital (but not as many as one would think.) I had “ICU psychosis,” which may be explained to a patient prepping for such a serious surgery, but for me, there no such preparation. U of M urged me to go to the “liver transplant class” after the fact since I missed it on the front end. Mostly it didn’t apply to me, and I was an “other” among those patients waiting for a transplant, or those on the panel who’d had one. People wait years sometimes for transplants, not days. The psychosis was because of the post-surgical drugs, and involved a scenario in which the television was left on and the program was Law and Order—my subconscious, drifting in and out, had me convinced that I was actually in the show—that I had committed the crime. I fretted about whether the police would rip off my IVs. When I went back to speak on the panel, I made a point to tell future patients (but really, some of them never will be patients because the list is long and the organs are scarce) to tell their relatives to keep the Food Network or something similar turned on in the room.
Transplant drugs cause diabetes, and mine has since subsided, but for 7 months I was pricking and shooting myself with insulin. Physically, I bounced back pretty well—I was fairly healthy to begin with (which helped secure my high placement on the list, as they don’t give organs to those who will “waste” them), and relatively young. I had lost all my muscle tone, but it bounced back—bodies are amazing systems. For three months, I stayed home from work, but I was working—just organizing my daily drugs and shots and doing my exercises was a job. I walked with a walker and had to wear a mask for a while—drugs that fool your body into not rejecting a new organ suppress the immune system (and I will be immune-suppressed from here on out), and outside air was a bit too much for me at first. The first time I flew, I wore a mask on the plane, and a family came to sit by me. The dad and son were in the row over, and the mom and little girl came to sit on my side. I made a comment such as “oh, I hope the mask doesn’t scare her.” The dad replied, “Oh, we just thought you were a surgeon”—keeping it light, which I appreciated. The girl and I played games the whole flight while her mom rested. Others stared, but it’s amazing how vanity goes out the window after a long hospital stay.
The medical saga goes on and on, and will forever, and I’m not sure when that will be, as organ transplantation does not exactly lengthen your lifespan—but in my case, it did bring it up from nothing. I can’t leave the house without doing an inventory of my medication. I have to wash my hands a million times a day. I have to be cautious about where and what I eat, because I can get a stomach virus from one tiny piece of bacteria that others can fight off. I sometimes come home from work and must lay down RIGHT NOW. But I also can hike, swim, and bike, go to the movies, read, go to the theater, work, teach, and go to school. But the drugs also cause a little bit of loss in cognitive ability and increased levels of crank.
I have become a bit more cautious in life—I don’t like to drive with certain friends because they take risks I would no longer take. But I don’t deny myself things. If I want to spend $150 to go see Book of Mormon at the Fisher Theater, I will (and did), but I really haven’t gone crazy. I don’t lecture, but I do remind friends gently to do things now if they can, rather than wait. If you really want to go to Europe, start planning now. I have a bit of claustrophobia that I never had before—I equate that with feeling trapped in the hospital, but I still plan on bearing long flights because travel is important to me.
The bottom line is that though life has changed, I was given life by a generous woman who died in a car accident and had cared enough to designate herself as a prospective donor (I don’t know much about her except she about my age—I am beyond grateful, but in order not to drive myself crazy, I try not to dwell on her and feel guilty). The time from my arrival at U of M to the time of my transplant was a mere 4 days, also proving that some recipients can’t wait long for donors, so the bigger the pool, the better. No one wants to think about it, and truly, there is no need to after filling out the online information. Even I don’t think about death much. Accidents can happen, and I still have some good parts that could be offered, so it gives me some peace of mind to know that someone could use my heart if I no longer need it.
In the United States, this is how organ donation works: there is a priority list, and you must be close to fatality to be put on the active list, and if you don’t have insurance, the chances of getting an organ decrease immensely. The powers-that-be have decided that the very poor will not be getting expensive transplants to save their lives, especially if there are addictions involved. The reason the uninsured are not top candidates is because the sustaining drug regimen is exceedingly expensive. I have billed my insurance company about $500,000 and counting. I have a friend whose husband has liver disease and has been on the transplant list for years, and they have two young sons. Because of the lack of donors, he can’t get the transplant that would improve his life because his death is not imminent, but his quality of life is highly diminished.
The point is not about dwelling on death—it is inevitable for us all. But because I’ve been through this ordeal, I know the statistics. According to University of Michigan Hospital’s liver transplant department (headed by Christopher Sonnenday), there are about 28,000 transplants done each year in the United States, but there are currently more than 120,000 people on the waiting list, which is a 4 to 1 supply-and-demand discrepancy. 18 people die every day in the U.S. waiting on transplant lists in general.
I know how important it is to spread the word, and I thought my personal story would hit home. I have a young niece and nephew who would’ve been devastated had their beloved auntie not been saved (not to mention my parents, siblings, other relatives, and friends). It is not enough anymore to simply say, “sure, I believe in organ donation.” For your family (so they know your wishes) and for the families of others who may need organs in the unlikely instance that you will no longer, please visit https://services.sos.state.mi.us/OrganDonor/Pages/Registry.aspx.