A couple of weeks ago, I shared the start of my journey to my transplant. Today I would like to share with you one of my best friend’s (Amy Zimmerman Gingrich) story to transplant. I’ve known her since we were very young and has MSUD as well. Her story is very different from mine and our other friends. Each recipient of a transplant has their own story. This is just one…..
Amy Zimmerman Gingrich Journey Through Transplant
Having been born with classic MSUD (the most severe form) to parents who didn’t know they were carriers, I was very very ill at birth. My mom suspected she was a carrier as a cousin of hers had a daughter with classic MSUD, but my dad was unaware he was a carrier.
This genetic nightmare led them on a journey filled with hospital stays, high levels, strict diet, mid night frustrations, and countless tears. You might ask yourself, ‘why does her life sound so much like a movie?’ I can assure you- I’m just like you except that I was born with a genetic disease.
Despite the fact that it’s called a disease, it’s not contagious, I can’t pass it on to others(other than a biological baby), and short of a miracle, I will die with MSUD. Thankfully, on January 23rd, 2006, I received my miracle.
The evening of January 22nd, my family was chilling a bit, getting ready for bed when the phone rang. My dad commented jokingly, “it’s Pittsburgh(the transplant center)!” as he picked up the phone and here it actually WAS Pittsburgh calling saying they had a liver for me. When my family heard that it was my call and the liver was for me, we hurried up to pack the car.
Within fifteen minutes or so after that call, we were packed and on the way out. We had our bags ready because a few weeks earlier, I had received a late night call that said we have a liver for you. At that time, I was totally not ready for that call. I hadn’t secured the proper paperwork for medical leave for work, my bags weren’t packed, and emotionally, I was so not ready. I wasn’t high on the list to start with, so of course I figured I had tons of time.
Little did I know that the doctors had had a conference just two days prior to that call that made me more of a priority than before. As it turns out, I would have gone out there only to be sent home the next day. We found out later that I would have been a second. With transplant, the team does not want to lose the viable organ so they call a priority patient (main) and a second person to receive the organ should the first person have some reason to not go through with the transplant.
Returning to that night of January 22nd, after we were on the road, everyone except Dad(he was driving) started making calls to people about our situation. My mother called our pastor to start the phone tree(prayer method), my sister called her best friend, and I made two calls- first to my best friend letting her know I was headed out and second to my boss to let her know. When I called her and told her I got my call, she almost broke my eardrum because she screamed so loudly. I lost her in a dead zone, and when I picked her up again, the line was busy — she was calling all of my coworkers to let them know what was going on.
Once we made it to the hospital, we checked in at the emergency entrance due to the time of night(1:30am), and the admissions team told us to go to the seventh floor(the transplant floor). Once I got admitted to the floor, the nurses put in an IV line to draw labs and put in IV meds like the anesthesia used for transplant.
After a nine hour surgery with the surgeons coming out to update my family on progress, the surgery is over and my family was allowed to see me. My sister had made a video about my transplant for her graduation project, and on that video, my dad said, “when we finally got to see her, I wasn’t prepared for what I saw. She looked like death and I couldn’t do anything for her. I wondered if I had done the right thing in pushing her for this.”
My sister commented that when she saw me before the surgery, I looked perfectly healthy; and after, I looked like I had been in a terrible accident. I had multiple IV lines in different areas, a ventilator to help me breathe, and an NG(nasal gastric) tube to give me nutrients through my nose to my stomach, a pulse oxygen clip on my finger and a blood pressure cuff on my arm.
Five days in the pediatric intensive care unit(PICU)- which is longer than typical because I had some blood pressure issues and reactions to some of the meds I was given- I was finally moved up to the transplant floor. I felt awful because despite multiple attempts to keep germs away from me, I had somehow managed to catch a cold.
I was on so many medications that pretty much all I could do was wait for meds, vitals, food, and bathroom breaks. Some of the stays I had, I would go to the playroom and help with crafts and projects because I was the oldest mobile “child” on the floor. Later on during that first stay, I had so many doctors that I met with, but specifically I was ordered by the respiratory therapist to take walks around the floor. I was sore, coughing, and feeling a bit like this wasn’t worth all this agony I felt.
I am ashamed to say I was not good at cooperating with the doctors, nurses, and even my parents. When I finally got discharged back to our apartment, I still felt crummy. I wasn’t nice to be around and the medications I had to take filled an entire counter! Some of those pills were taken two or three times a day, and because I had made a deal with the doctor about one “medicine” in particular, I had to add on temperatures and blood pressure readings three times a day.
I think I drove everyone crazy, but luckily(fortunately) my mother had two friends to vent her frustrations with and I had two friends as well. Enter Elan and Brittany, two other MSUD friends who I’ve known from birth basically. Yes all three of us had the same form of MSUD and all of us had transplants within days of each other- Elan six days before me and Brittany eleven days after me.
Whenever one or all of us needed comfort and companionship, we would call each other on the phone and say, “meet you at the pool in 5.” None of us could go swimming or even dip into the hot tub due to risk of infection to the incisions we all wore proudly on our bellies. Brittany and I were allowed to dip our feet into the hot tub and Elan would join us but he couldn’t put his feet in.
I can remember sitting there with Brittany and Elan for who knows how long talking about anything and everything. It was wonderful to have a mother who was sympathetic to my feelings, but it was even better to have empathetic friends like them. Our families would do all kinds of things together and the mothers would vent their frustrations to each other.
Each one of us has a different story to tell- Brittany wanted a pretty scar so she could still wear a two piece, Elan was looking forward to eating all the red meat he could get his hands on(he’s Jewish and wasn’t allowed to eat red meat, but because of the MSUD, his priest made an exception), and I just wanted to be able to eat what I wanted. However, out of the three of us, I was the one who had the most trouble eating protein. Things that were similar to what I had with MSUD were not a problem, but new foods were hard to swallow.
It would be 9 1/2 weeks till I would be allowed to return home for a short while. In the meantime, I was hospitalized two more times– the first for a medication change(the original anti-rejection drugs were very hard on my poor organs already taxed due to the two surgeries I’d had) and the second was for rejection of the new organ. The new anti-rejection drugs were more organ friendly but didn’t offer the same protection that the original one did.
Everybody always asks me the same thing; did you have to get a new liver if you rejected this one? I always answer: I still have that miracle liver. Rejection does NOT mean another transplant unless it was absolutely necessary. Rejection simply means more medications, more labs, more IV lines, and a resulting 15 day stay. During that stay, both Elan and Brittany got to return to their homes and I can honestly say that I was angry with them for abandoning me.
Because I had been coughing for days before they even thought I was rejecting, I had lost so much weight because I couldn’t keep anything down. Nausea, vomiting, coughing, and more made life for me and my family miserable. Every time we had clinic(after the new drugs were given), the doctors listened to my lungs due to the coughing and said they were clear- nothing was wrong. I was totally upset because it was obvious to me that something was in fact very wrong.
It took a very long time before I could convince the doctors that something was very wrong. My parents had been convinced that all my problems and issues were in my head and I needed a shrink. The more I tried to get better, the more frustrated we all got. Tempers ran high, patience ran very thin, and tears were endless. When finally I was able to convince the doctors that I needed help, I’d been sick for over three weeks. After my second 15 day stay with the rejection- two chest tubes, multiple doctors trying to get me better and me fighting with everyone— I was sick, in a lot of pain, and angry that no one would believe me.
Till it was all said and done, I had a rough first 6 1/2 months due to multiple hospital visits and not feeling really well. I had several major complications that are still giving me problems even now at thirteen years out. I’ve had ups and downs throughout these last years and more than my fair share of illnesses- some stemming from transplant and some from the MSUD. I wouldn’t want to go back now that I’m this far out, but my food struggles are still very real. I’m not comfortable eating only protein foods because before transplant, I was a carbs girl.
I wouldn’t be here most likely if someone hadn’t been willing to donate usable organs for people like me. 13 years out and I’m thankful for the struggles because they tell me that it wasn’t a dream or something I had imagined. Do the waiting list a favor and make your donation wishes known to your family so that someone like me could have a new lease on life.
See you next time where I will share more on my transplant journey.