LiverDonorNightmare.com
  2/14/00 Initial consultation at the hospital. I met Transplant team member Dr. D, J R, my recipient's social worker, and L I, a nurse practitioner. I received general info on the procedure--including the intensity of my cousin's need, the surgery itself, recovery of 6 weeks and success rate. I was told that pre-operatively and post-operatively, someone from the transplant team would be available by phone to answer any questions and address any concerns. I could decline at any time. If I wanted to proceed, a social worker would be assigned and further tests would be scheduled. I was given the hospital's Living-Related Liver Donor Transplant information booklet.

I noticed that the doctor had bandaids around each of his middle three fingers on both of his hands. I couldn't help but think that he had "slipped" or something during surgery. I asked him about the injuries. He said that so much surgery and scrubbing had made his fingers raw. I was relieved. I had brought a list of questions with me that my family and friends had created. We went over them one by one. When I asked exactly how long I'd be out of work, he said, "well-most people are out 4-6 weeks. For you it should be 4." I was given a laminated Liver Donor Card with my recipient's insurance information on it. This was supposed to presented anywhere that I had a test/procedure/etc. as my insurance info.

3/3/00 MRI, EKG, Chest x-ray. I met J O, (the social worker assigned to me by the transplant team), and had an interview. I was told by the booklet AND by J O that her job was to answer my questions, be a liaison with the doctors, and deal with any issues I would have. I requested to talk to a liver donor who had been through the procedure. I was given the name and number of D P, a recent donor at the hospital.

The x-ray and the EKG were a snap. The only difficulty was when the receptionist/nurse asked for insurance information. I presented the Donor Card and was met with stares and wonder.  CLEARLY they had no idea what this card was.  Both procedures were done at different places in the hospital and neither one of them recognized this card.  Thankfully, they did the tests and asked questions later.  The MRI desk was expecting me. (I had never experienced an MRI and my worst fear, actually, was the IV.) While in the waiting room, I was given this awful tasting mixture to drink and then was led to a changing room.  I put on a gown, was given instructions and was sent into the tube.  I can still hear that woman's voice now saying, "ok-on the count of 3 -don't breathe-don't move."  We must have done that 30 times.  I was in that MRI tube for 50 minutes.

3/15/00 Met with D P who was 10 weeks post donation. I wanted to find out what to expect and to see her scar. She was healthy, happy and singing the praises of Dr Teperman.

DP was the first to explain the JP drain as only another could do. She told me where it would be and that it "just sticks out of your skin" and that the "bulb of liquid" has to be emptied. The truth was just gross. I asked where she put it? How she put it there and did it get in the way of things? She gave me valuable insight about pain (she was on percoset for a number of weeks) and recovery and her recipient and the transplant team. I was grateful to talk to her and felt confidant about the procedure.>

3/28/00 Met Dr. H, the liver specialist. I was given a cursory physical exam and asked a few questions. I believed that Dr. H will be the consult representing ME when further tests are done and I'm being considered for donation.

Shouldn't the guy who is supposed to represent the donor NOT be affiliated with the transplant team? How is he unbiased if he is working for the team?

4/14/00 Had Angiogram. The doctor performing the procedure said that I had an additional vein in my liver and I might not be a candidate for donation because of it.

The information booklet lists this as "an invasive test." Let me be clearer. I was in a gown , on a cold metal table, on my back. For about 30 minutes, there was prep work done. Then the doctor came in and a tube was placed through the artery of my groin up to my liver. There was some discomfort and a strange sensation as the dye was sent through my system. The test took about 35 minutes. Then I was put in a small curtained area where I had to lie flat on my back with heavy bags against my leg for 4-5 hours. I went home after that and walked with tenderness for 3-4 days.

4/26/00 Met with Dr T,  and D C, another nurse practitioner. Dr. Teperman explains that the donor is his top priority. I am a candidate based on the results of blood tests, MRI, chest x-rays, EKG, Angiogram. Dr. Teperman explained who the staff was, that his team included Dr. J, Dr. M and Dr. D and that I would be out of work 4 to 6 weeks.

He was just as DP had described him--fast talking, exuding confidence, wearing cowboy boots.

6/7/00 I had dinner with DP. and my recipient's sister, my cousin Terry, to discuss the specifics of the operation from a non doctor point of view. DP explains about waking up and feeling nothing, how the drain works at home and when it comes out, post-op doctor visits, and how her mom (to whom she donated ) was doing.

It was important for Terry to hear about the procedure and to see the scar. DP let us take a picture to show my family what to expect.

6/7/00 the hospital called with 3 possible dates for the surgery. We chose 8/8/00. the hospital said a doctor would call us to confirm the date. As of 6/17, I had no call.

I had to warn my employer and make some arrangements.

6/17/00 My recipient calls the hospital upset because no one had called to confirm the date. She also e-mailed the hospital.

6/18/00 The hospital called to confirm 8/8/00 as transplant date.

6/20/00 I called plastic surgeons (randomly from the phone book) to ask if there was anything that could be done to minimize the scar--a cosmetic closure was recommended. I called L I, nurse practitioner, to inquire about the cosmetic closure and she said that a plastic surgeon is usually in surgery to handle any complicated minute reconstruction for the liver recipient. She thought that other donors had asked for a cosmetic closure in the past. She would investigate and call me back.

This was a great idea that a fellow employee of mine just mentioned.  She said, "can't you ask for a plastic surgeon?" Who knew?  Since no one on the transplant team had mentioned it, I did not even know it was an option.  I am grateful for the idea and that I did it.  I do NOT think that the scar is significantly different.  I just feel like perhaps a more detailed job might have been done by the plastic surgeon.  Who knows what happened anyway?  Donors are asleep through the whole thing!

 

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