My name is Pauline Snyder and here’s my story of my Living Donor Transplant, which took place May 2, 2001 at Mt. Sinai in NYC.
Well, I made a decision to see if I could donate back around Christmas. I wrote to Mt. Sinai (where my sister, Joann, has been on the list since 1994) to see if I could be a donor. I’ve accompanied Joann on every appointment since 94. I have been a moderate beer drinker and didn’t know if I could. I had stopped all beer in November. I’m 53, 6′ and was about 155 at the time. The Coordinator, Marian O’Rourke, set me up with appointments; first with the Social worker, then heart doc, blood work, MRI and biopsy. We live 90 miles north of NYC, and that was kind of a pain, plus expensive parking. So everything was set up and the operation was set for May 2nd.
Two days before the operation we went down to the Transplant center for blood work and to go over everything. At that point the nurse taking my blood mentioned that a male model had plastic surgery instead of staples. She said go ahead and tell them that’s what you want too, if that’s what you want. My husband and I are avid beach people and I opted for that.
Surgery: I was brought in first at 9 am to the room outside the operating room. There I met with so many doctors. One took one hand, the other took the other. I was set up so that intravenous could be started. Then I was given an epidural in my back. (That didn’t hurt) I was rolled into the op room and within seconds I was out. My operation was six hours. I woke up for a few minutes in ICU. My family was there. I could hear them, but couldn’t open my eyes. I had a respirator in my mouth. I had boots on my lower legs pumping, to keep the blood circulating. I had a tube into my juggler vein, to recirculate my blood. I was kept there overnight, but I was out the whole time. The only bad part of that was my mouth was so dry. No other pain.
Next day my respirator was removed, I was given an oxygen mask and tubes for my nose. The tube in my juggler vein was gone and then I was moved to a regular room. I was kinda out of it the first day. I was given ice and then later in the day liquids. Next day I could eat, but for those days in the hospital, I didn’t eat very much. I was given percoset at night and the drugs in my epidural, and I just didn’t have much of an appetite. I did worry after a few days, I didn’t have any gas and was worried about a bowel obstruction, but by the 5th day, yippee, GAS!! I went home on the sixth day. I did retain fluid and couldn’t zip up my jeans when I was able to go home. I was extremely tired the first two weeks. I started by walking about 6 houses up my street and back for the first few days and gradually do more. Now, I can walk anywhere.
Pain: I never really had pain, although they told me I would have a lot. I had and still have discomfort. Since I was so vain having this plastic surgery, I actually feel like a tight cord is pressing on my stomach. It’s all right in the morning, but when I eat a big meal it’s uncomfortable. My sister had staples and she doesn’t have the tightness.
Breathing: I’ve had a problem with breathing, since the diaphragm was cut. When I first came home I could only sleep in an almost upright position. Now I’m down to 2 pillows and the breathing is getting a little better.
My thoughts: Well, I’m still glad I did this. It’s tougher than I thought it would be. I’ve been a very healthy person who has always healed quickly, and I was sure I would have been back in shape in a month. I figured I’d be different. This being such major surgery really kicks your butt.
My scar looks good and is healing really nice. It’s still swollen in the area and tender. I either have to get up and walk, or recline, then I’m fine.
My husband e-mailed everyone to keep them updated. Read on:
Here’s a brief update of (Wed. May 2,2001) ordeal……..
7:10 AM – Arrived at Mt. Sinai and checked in. Pauline had Dr. Charles Miller, head of the transplant unit as her surgeon. Joann had Dr. Sukru Emre.
8:30 AM – Pauline was the first to go into the operating room. As tears welled in everyone’s eyes, except Pauline’s, she of all people smiled and said “don’t worry” and headed off.
9:00 AM – Joann’s turn to go and she seemed a little scared.
2:00 PM – For the first time of her life, Joann is on time and opened up and ready for her new liver. But Pauline’s extraction is taking longer than expected and is behind schedule, so Joann is just waiting. In the meantime they find that Joann has something in her system which could possibly reject her sister’s liver. The doctors ask for approval to use a newer, more powerful drug ( simultax or something like that) to help fight off any possible rejection. Joann’s mom signs the waiver form. The doctor says that other organs will be rejected, but the liver is much more tolerant.
3:10 PM – Pauline is finished, everything went fine and they will hold her in the operating room to make sure she isn’t bleeding etc. She stays in the operating room for 1 ½ more hours.
4:45 PM – Pauline moves out of the operating room and into the PACU to be monitored.
5:20 PM – Joann’s new liver is functioning, but she will still be open for another 2 hours or so to connect the bile ducts.
5:30 PM – We get to see Pauline for the first time in the PACU. She’s heavily drugged with tubes and IV’s all over, yet acknowledges our presence. We can only stay a few minutes.
9:40 PM – Joann finally gets moved to ICU. Her new liver is working good and producing bile. Toxins in her blood keep decreasing every time they retest her blood which indicates the liver is doing it’s job. She has hypothermia due to being in the cold for 12 hours.
10:20 PM – Get to see Joann for the first time. Sleeping and heavily drugged but has excellent color in her face which I haven’t seen in years.
So that’s it for day #1
Day # 2 -Saw both Pauline & Joann this morning and both seem fine. They both have tubes in the neck, arms, fingers, nose. Pauline’s throat one is out and she can talk. Joan’s come out later today. Pauline is drowsy and thirsty and in no pain ( due to the good drugs ). She will be moving out of the PACU today and to her own room. Joann still has the tube in her mouth so she can’t talk but is alert. The two concerns for her are her bilirubin are up from 7 to 9 which is causing yellowing of her eyes. They think they can fix it with medication. There is also a blood coagulation concern, but they think they can get it under control. Her liver is working fine since the toxins are still going down with every test. It seems like everything is going as well as the doctors expected. The mothers are holding up well after the long day yesterday. The author is beat!
Here’s the latest update (Tues. May 9th) on Pauline & Joann’s liver transplants……
Pauline is home and doing well. She is extremely tired and just wants to rest. The doctor said that this will continue for 8 – 14 days after surgery. She amazingly is not taking any pain pills ! Her sense of smell is out of kilter, everything smells bad. She finally is starting to eat. She doesn’t want to talk to anyone at this time so please call after a couple of days, unless you want to talk to me. Joann is still in the hospital and doing much better. She had a bad day yesterday, nausea, pain, and general depression. Two days ago they had to take her off the anti-rejection drugs because her kidneys weren’t working, but that solved the problem and she now is back on the anti- rejection drugs. This morning she was much better and will be getting her stomach drains out and the IV from her neck. She also has smelling problems. She MIGHT be getting out as soon as Friday. So all seems to be fine now with both girls and I’ll keep you posted. Feel free to forward this to anyone I may have missed. ———————————————————————————————————–
Here’s the final chapter of the saga of Pauline and Joann.
Joann arrived home at 5PM Saturday. She was very upbeat, looked great, talkative (must be from Pauline’s liver), and better than I’ve seen her in a very long time. As a matter of fact, she seems to be so much better than Pauline. It must be that Pauline only has 40% of her liver while Joann has 60%. Not that Pauline is bad either, every day there is noticeable improvement. We even went to the store today!
Skip this next paragraph if you don’t want to get a tear in your eye……… Last Thursday Joann’s doctor came to her hospital room and Joann asked him what condition her old liver was in. He said that it was so bad that within 3 to 6 months she would have been so sick that a liver transplant may never have been successful and she wouldn’t have lived for more than a year…………
Nice planning by Pauline. It’s amazing how both girls seem to be so much better each day. But the scary thing is that Joann “seems” to be so much smarter than before. Hey I didn’t say that, the keyboard just typed it.
Anyway, I think this will close the story of Pauline and Joann’s miraculous journey through another one of life’s ever challenging puzzles and will begin a new story of another life for Joann.
Update: Not a Happy Ending
Joann had complications during that summer. Fluid retention (ascities), a large hernia, which she had fixed, and hospital stays. By February of 2002 things seemed to get better. Suddenly, in late March of 2002, Joann died of cardiac arrest.