Wednesday, October 2, 2013

How a Facebook status cost me an organ

Yes, you read that right. And if you take the time to read this ridiculously long post, I'll promise a good story.

I bet you’re thinking that someone posted that there was an awesome band playing at a shady night club in the wrong part of town. Never one to turn down live music, or shy away from venturing out on my own, I head into the dark. A chloroform laden handkerchief, a guy that watched orlive.com a few times, and a rusty scalpel later, and I’m recovering in a dirty bathtub. Actually, that’s not nearly as interesting as what really happened.

It was March 5, 2012. I was scrolling Facebook while taking a hot bath after a long day. My friend, Sara, who I have known since childhood posted the following... 


I thought it was a joke in reference to the wedding she had just been in. Maybe the open bar had been open too long. It didn’t occur to me that had there been too much alcohol consumption it would have affected her liver, not her kidney, and I said something about being O+. As I then scrolled the comments I saw that she had a friend who was in need of a kidney transplant. His name is Jim. They had met at a car dealership and had bonded when she managed to squeeze his 6’4 frame into a Smart car, and found out that he enjoyed line dancing.

Now, let me tell you about Sara. We have known each other for ages. As young girls we did Girl Scouts together. After many years out of touch we reconnected when I started working at the same restaurant she did. It was there that our friendship was restored. We dated two guys that were friends, had babies 9 months apart and eventually, she got me a job at an insurance office. We worked together, babysat for each other, and spent New Year’s Eve together. She threw me a Bridal Shower and Baby Shower, in the same year. Sara is an amazingly compassionate person. She will go to great lengths to help those she cares about. So it came as no surprise that she would see a person in need and take to a format where she knew she could instantly reach 800 + people. She posted on Facebook.

And of course, much needs to be said about Jim. But that’ll be a little at a time. At the young age of 40 Jim experienced something not many people survive. He had a tear in his aorta. He told me once that the night the tear ruptured he couldn’t sleep, and had he been able to, he would never have woken up. The repair to his aorta was miraculous; technology and modern medicine at its finest. To repair the tear, the surgeons needed to stop his heart. For 8 minutes he was dead. And despite what Jim wishes, he doesn’t get to start the clock over when his heart started. He woke up still a 40 year old man.

The surgery took its toll on his entire body, but especially his kidneys. The surgeons hoped that after a while his kidneys would “wake up,” however, that was not to be. Dialysis was required and after 3 years, they were still asleep. He was able to get on the transplant list, but who knew how long that would take. His best bet was family members. Jim’s family were more than willing to go through the testing and surgery. Sadly, none of them fit the guidelines for being a donor, which meant waiting for that elusive match on UNOS.

Now, back to that status. I had commented on it that I was, in fact, O+. Now that I knew what Sara had meant by the status I wondered what a kidney transplant was like, both for a donor and a recipient. Sara offered to send me an email with the contact information for Deb, a transplant coordinator at Tufts University. I received the email, thought “Ehh, what the heck,” and contacted Deb. Turns out there were two other people who had shown genuine interest in becoming a donor. I’m not going to lie. I had an interest, but I wasn’t sure if it was really something I could do. I agreed to a conference call with Deb and the other two people. As it turns out, only one other person was able to make the call, his name is Bob.

I was very casual about the conference call. I actually just put the phone on mute and speaker, and listened to Deb, while making dinner. She explained that the testing process was extensive. The donor would need to be under a certain BMI, with no family history of diabetes. She was blunt in making us aware that it was painful and that recovery was slow, but we would have the full support of an entire team of doctors, interns, nurses and counselors to help us through it. I was still of only a mild interest, but agreed to come in and meet the surgical team and be tested to see if I was a match. The meeting was set for the end of April. At the end of the conversation she asked if we would like Jim to be there at the meeting or not. Bob quickly answered in the affirmative and I reluctantly agreed. It wasn’t that I didn’t want to meet Jim, I was just terrified of giving this man hope that one of us would be a match and be able to commit to this surgery, and then having those dreams crushed.

I didn’t tell anyone about this meeting. Not even my family. It was about a week before the meeting, while at my friend’s house, watching the movie “You Don’t Know Jack,” about Jack Kevorkian of all people that I finally told someone. I mentioned how it was a crazy idea and that I didn’t expect to be a match, and that if I was a match I wasn’t sure if I could go through with it. He asked “So, do you want me to hope that you are a match, or that you aren’t?” After a pause, I said “Hope I’m a match.”

The meeting was on a Tuesday. I was running 4 minutes late. I walked into a room with 4 people wearing white lab coats. A man wearing Sponge Bob pajama pants leaned on a walker, heavily laden with “Hooters” stickers, to stand up and said “I’m Jim,” and enveloped me in his arms without warning. Half way through the hug he said “Yeah, I’m a hugger.” Even in high heeled boots he towered over me. Sara came to the meeting and I met Bob, who is from the same city as me. During the meeting we were told exactly what was going to happen. That day we were going to have our blood drawn to be tested to see if it was a match with Jim. From there, if we decided to continue, it would be 3-4 months of testing. The doctors would test everything to make sure that if one of us decided to donate our body would not be adversely affected. The goal was to get the kidney out without leaving any lasting effects on the donor. The whole meeting was a blur. My hands were sweating. I remember quite a few times Jim cracked a joke and you could tell that everyone there adored him.  After about an hour Bob and I went up to the lab and had our blood drawn.  And then we waited.

After the meeting, as we were acquainting ourselves, Jim said to me, "I can tell you're spunky by your short, red hair." That made me laugh. And then he said that I always, always had the option to back out. This was comforting, considering that we didn't even know if I was a match yet, and that if I was a match, I didn't have to follow through with any of it.  

Two weeks later, Cam, Brooke, and I were in the Cleveland Airport, on the way to Provo, UT, to see my brother, Andrew, graduate from college. I got a call from Tufts. It was Deb. Both Bob and I were a match. My stomach turned and I couldn't really believe it. Deb and I talked for a few minutes. She said that if I was still willing, we would proceed with the testing. They decided that, although Bob was a match, it would be better to use me as a donor, if I was still willing, because my match was closer. I made an appointment to come in and start the testing. 

My initial thinking was that ok, sure, I was a match. But this was extensive testing. They were going to go head to toe to make sure that I was healthy enough for this. And should I pass that there was still a psych evaluation, and let me tell you, if they still let me donate after getting a peek at the inner workings of my brain, then maybe they were in need of a psych eval. I knew that I was going to go through with the testing, I just sort of doubted that I would pass it.

It took 3 months of blood draws, peeing in empty containers and bringing gallons of urine to my appointments, x-rays, a CT scan, and an EKG. It doesn’t sound like much, but I was at Tufts about 2 times a month during the testing phase. At one point there was a question about my liver function. I had to do over a couple tests to determine what was going on with my liver. I remember distinctly a conversation I had with Deb. She was letting me know that my liver function tests came back the same as the first time, but the CT scan didn’t show anything wrong. She said the board had consulted and decided that the irregularity wasn’t enough to keep me from donating and that the surgery wouldn’t affect me negatively. But then she said “Shannon, this is your way out. If you want to get out of this without feeling bad, now is the time. You have the perfect excuse.” And you know what. I thought about it. I took 4 whole days to think about it. I ran through every possible scenario in my head. I asked myself if I could live with myself if I backed out, and I knew that I could. But I also told myself an opportunity like this may never happen again. I was never going to be as young and healthy as I was at that moment. In a couple years time I may not be surrounded by the support system that I had at that very moment. I might not have the flexible job that I had, that was allowing me the time off I needed to have the surgery. And that was when I finally knew. It was now or never.

When it was time for the psych evaluation I met with several people. One was a pastor who worked at the hospital to provide emotional support and to serve as an unbiased third party. The other was a counselor who told me right from the beginning that she was on my side, no matter what happened with the surgery. Both people asked me if I was doing this of my own free will. And both were in awe that Jim had found a donor from a social media website. By August we were discussing surgery dates.

Also in August was our family reunion. My siblings, brother and sister-in-law and I put together the most fantastic 31st Anniversary party for my parents (we were a year late, whatever.) This party would not have been complete without the help of Jim, who hooked us up with a superbly talented  professional ballroom dance couple who performed at the party. At my parents' wedding they had professional Costa Rican dancers perfom, and we wanted something similar with a modern spin. Without Jim's help, we would have never found someone to do it. 

The date was set for October 2. It was the perfect date. The fall semester would be in full swing, and I had a Monday night class and an online class. With the surgery on a Tuesday, and the following Monday off for Columbus Day, I wouldn’t have to be back at school for almost 2 weeks. From the moment I had decided to go through with the surgery I had nary a doubt, until the end of September.

With only a week before our surgery everything that had been set so strategically in line fell out of place. I was arguing with one of my best friends. We never fought. My last semester was starting off rocky. I lost my job. The Friday before the surgery was going to be my last day.  And with all of this chaos came all of these crippling fears. Suddenly, I didn’t know if I could hack it. And these morbid thoughts kept running through my head. “What if my kidney wasn’t meant for Jim?” “What if he was really a bad person and I was helping him to live?” “Why was he so obsessed with Hooters?” “Shouldn’t I be looking for a child that needs a kidney, or a young mother?” I spent most of the nights that week crying to my mum, my dad, my mother and sister-in-law. I had a panic attack under my desk, at work, and one of my best friends dragged herself right under the desk and just held me. I had a melt down on the phone with my brother and maniacally paced as I hopped from subject to subject telling him everything that was going on in my life that was screwed up at that time. And guess what everyone kept saying? “It’s ok, you don’t have to do this.” My momma-in-law, in an effort to bring me comfort, stalked Jim’s facebook to get a better feel of the kind of person he is. All she read were wonderful things. It was obvious that Jim was well loved, that he had a giant support system in his dance community and that everyone felt he deserved a transplant.
 
Eventually, I turned to the source. I messaged Jim with questions about the kind of life he was going to lead after the surgery, what was up with the Hooters business, was he going to take care of himself. And you know what he did. He didn’t write me back for days. I was in emotional distress and he took days to write me back. And that was the best thing he could have done or me. It allowed me to compose myself and dig deep about how I was going to get through this without feeling pressured. When he finally did, he quelled my fears, he answered everything perfectly, and those words reassured me that my kidney was meant for him. 

And with that message from Jim came the falling into place of everything else. My friend and I made up. I found a job that I could start two weeks after surgery. I talked to my professors and got my classes sorted out. And although I only slept for 30 minutes the night before surgery, I knew I was ready.

photo.JPGThis was my pre-surgery dinner. Those post its are notes from my kids. Cam's says "Dear Mama, I hope you feel better. You made a awsome choice. PS. Please give me some pickle ginger if you do not want it." Brooke's says "I love you and hope you like the sishi. And that you get better. Brooke."

The day of surgery I was surprisingly calm. My mum drove me in at 6 in the morning, but I made her promise that she wouldn’t wait for me to get out. I needed her at home with my kids, so that their life wasn’t too interrupted. Everything happened really quickly. We walked in. I signed mountains of paperwork, repeatedly told my mum that I didn’t want to be kept on life-support beyond what was reasonable, and then signed papers saying the same thing. I changed into my johnny, only the sexiest article of clothing on the planet, and my non-skid socks. I walked into the pre-op room, hopped on a bed and that was when the action started. An intern tried to start my IV, but ended up going right through the vein, squirting blood everywhere. Suddenly, it dawned on me that this is a teaching hospital, which meant not everyone was a pro. And strangely enough, that didn’t worry me. I just kept pretending I was in Grey’s Anatomy. Before long I was hooked up to IV’s and had heart monitors covering me. My mum kissed me good bye, and I watched as the nurse inserted the sleep medication into my IV. The next thing I knew I was waking up.

I had my gall-bladder taken out when I was 20, right after giving birth to Cam. I found out at that time that I have a difficulty with anesthesia. I had such a hard time waking up from my gall-bladder surgery that they had to put me back under with something else, to let the first medicine wear off before bringing me back up again. My surgeons knew this and there was an extra anesthesiologist throughout the whole process making sure I was handling it well. Despite the precautions, waking up was extremely difficult. I remember that I didn’t ease into it. I went from unconscious to very awake within moments. I couldn't breathe. I was gasping for air, shaking and screaming. I remember the nurses holding me down and keeping me from tearing the oxygen mask off. My arms were restrained, either to help control the shaking or keep me from clawing at my face. And then my body relaxed and my mind went blank.  They had to give me another medicine to calm me while also allowing me to wake up slowly. I could hear everything around me, but I couldn’t move or speak.  Within a couple hours I was more or less conscious. When I was finally able to speak I asked how Jim was. His surgery had started an hour before mine and had continued for a couple hours after. The nurses around me didn’t know much but told me someone would let me know. Finally by early evening I was brought up to my room. It wasn’t until a little while later that our team came up to let me know that Jim was doing well, and lo and behold, the kidney “pinked right up,” meaning, it started doing its job right away. I was exhausted and ecstatic. Jim was brought up to the room right next to mine, but I wasn’t allowed out of bed for the first 24 hours, so I didn’t see him until the next day. That first night was rough. I was in a lot of pain. If I fell asleep that meant I was missing my morphine pump. At one point I needed to call the nurse because I couldn’t breathe. I had to stand up and stretch my lungs before it felt like I was getting any oxygen.

The next day I was actually feeling pretty well. I was allowed out of bed and to walk around a little bit, but not before getting this...

photo.JPG
 
Little did the hospital know, I’m a fall risk in bare feet and completely clear headed. Maybe a steady dose of morphine would improve my balance.
 
My catheter and one IV were removed. I still needed oxygen and the leg compressors while in bed and assistance to get out of it. I was allowed a liquid diet. Sara came that afternoon for a visit and kept me company for quite a while. That evening my entire family came, my kids, parents, brother and sister and one of my closest friends. My mum got me out of bed and we went to see Jim, who was doing extremely well. He was hooked up to even more machines than I was. But seeing the color in his cheeks was simply amazing. Before surgery we had been informed that the donor was going to feel like death warmed over. But the recipient was going to be feeling better almost instantly. This definitely seemed to be the case. Sadly, within about 30 minutes of my family being there I had a reaction to one of the medicines I was on. My face blew up and I was all red. My mum called the nurse and she decided that I needed some Benadryl, quick. I begged to wait until everyone had left, but before I knew it, I was falling asleep. Also, unfortunately, Jim developed a bleed and had to go back to surgery.
 
The following day I was allowed to eat real food and walk around. My last IV, the oxygen and leg compressors were removed, which also meant my morphine pump. But despite the massive amounts of pain medicine I was on, I had acquired a crippling migraine. I also wasn’t able to hold any food down. I spent most of the day in bed.  
 
My mum came for a visit on Friday and found me in not so great shape. She had brought me a milkshake, to see if I could tolerate it, but despite our best efforts I was hooked back up to machines. This was discouraging to me, as I had been desperate to go home on Saturday. 
 
Jim, although up a floor in ICU, was doing well. The 2nd surgery went smoothly. I was disappointed that he was going to be in the ICU for a couple days. I had some hijinks planned for the two of us, and we were going to be getting on the nurses nerves. Lucky for them I was too tired and sore and Jim was a floor above me.
 
Sunday rolled around. My family came down  that evening to see me again. I still wasn’t eating and I was still hooked up to machines, but I promised that if they let me go home I would behave myself and do what I was supposed to and stay in bed. It worked and I was released. Before we left we all piled into Jim's room to say so long and give hugs and kisses. By this point my mum adored Jim, and would tell him how wonderful he is ever chance she got.

The car ride home was torture, every bump vibrated through my body. When we got home my mum set me up on the couch, and that was where I stayed for the next 24 hours. I took half the oxycodone I was allotted and slept for real for the first time in a week. When I finally woke up I ate, and held it down. And from there my recovery went smoothly.

Jim was eventually able to come downstairs the day before I left. He had no more bleeds and the man was filling his urine bag like a champ. To this day I am still in awe that my tiny little kidney, from my 5’3 frame can do the work needed for a 6’4 man. Jim’s stay in the hospital was a bit longer than mine. But eventually he too made it home.

I would never lie and say my recovery was a cake walk. I was on pain meds for 3 weeks before I was finally comfortable enough to get off them. I was exhausted. I needed at least two naps a day for the first 2 months. And I required a nap once a day for at least 6 months post-surgery. It was around that time that I felt like my old self again. And now, a year later, I would never know I’m functioning on one less organ.

I was hesitant to write this post. I started it as a way to celebrate our 1 year anniversary. Eventually it became a way to tell our friends how this all came about, and for them to hear my side of the event. And then I realized that I was holding on to a story of triumph, both mine and Jim's.  My purpose for this post is to share this amazing experience. I got to become good friends with the most incredible, inspiring man. I was accepted into his immense circle of friends as one of their own. I got to test the limits of my body, and gained the knowledge that I am significantly stronger than I ever thought. And I want to spread the word. Someone out there may have never thought of becoming a donor and by reading this maybe they will consider it. Perhaps there is a person who is in a similar circumstance as me, maybe there is friend or relative that they are willing to donate to, but they have the same doubts and fears as I did, and they need some honest feedback from someone who has done it. Or there could be a person currently on the transplant list that needs the reassurance that there is a match for them. This post is for them.

If any of this has sparked your interest in organ donation here are some very helpful sites. 




And of course, don't be jerk. Make sure that you are registered for organ donation in the case of an untimely death. No one is too old or too sick to be registered. 



2 comments:

Katy Stalnaker said...

Shannon, I know you don't know me but my name is Katy. I'm 19 years old and 6 months ago I was in a very bad car accident that took my life twice and shattered my young pelvis. Broke my ribs,sacrum and hip. I also had lacerations to my liver and intestines and had a collapsed lung. There's a few more injuries that I can't keep track of so that means they're minor. I met Jim 2 years ago at our good friends dance event. When I heard he found a donor, I was so hopeful for him and knew he would live to see tomorrow. I wouldn't be here today if it wasn't for Jim. Well, I would be but I wouldn't be nearly as hopeful an determined as I am 6 months later. He keeps my spirits up and brightens my smile on the tough days. I couldn't thank you enough for helping us keep our Jim. Angels like you are what keep people like Jim and I who have been through some traumatic injuries to our bodies, alive. I had almost all my blood bleed out of my body and had it all replaced with pints of donors blood and part of my liver is from a donor too. You my dear, are his guardian angel. Just like he is mine. Thank you. Hope there's an angel to help you one day as well. :)

-Katy

Stephen's aunt said...

I have a nephew (Stephen)Who had a liver transplant Aug. 2012. His liver damage was caused by a genetic disease called Alpha-1. He had his surgery at Mass General. He was in the hospital for a couple weeks and am happy to say he is doing remarkably well. He is in his forties with a son and daughter. He was so sick before his transplant it was a day to day situation. He is great now and has been back to work for a few months.