LiverDonorNightmare.com
 

4/26/02 I saw Dr. Koneru today. It was a follow up visit to check me out (after a few months off of the coumadin) to see if the clot had reformed. Since he did not have the results of my ultrasound, he could say with no certainty that I was fine. But he does suspect that I am medically PAST the danger and should move on with my life.

I asked him why, if the hospital had performed a "draining of fluid" on Tuesday, September 26, 2000, was I  so sick on Friday, September 29th. He said the explanation was simple. "You had a bile leak. When you went in and were drained, no one looked to see WHERE it was or HOW MANY pockets of fluid there may have been. A CT scan should have been done to provide that information. THEN you should have had the specific area drained. Then a CT scan must be done AFTER the draining procedure to ensure that everything had been drained and that no fluid is left to collect and fester."

The original hospital did not LOOK for the leak. They left me with an active leak, PLUS a collection of fluid from the draining procedure that festered and became infected.

I am often asked the question, "Are you sorry you ever donated?" 

How does one answer that?

My recipient is alive.  That was my goal. She is a mom and a wife and a sister and is surrounded by a loving family. So, no, I am not sorry that I donated.

I am disgusted that the hospital harvested my liver and then moved on to other transplant surgeries without making sure that I was ok. I am certain that the transplant team thought that I would "just get better eventually" and then they just didn't look back.  I had fevers, discomfort, a swollen belly, vomiting and more, and yet I was treated by phone. At the transplant office, I saw nurse practitioners or receptionists instead of doctors.  Sometimes I wasn't seen at all. I just grew sicker and kept the faith that they knew what they were doing.  And then I almost died.

I will never understand why I was so easily dismissed.

I was treated like that kid in the back of the 1st grade class that cannot read.  Having all the other kids read around him and to him does NOT make him a reader.  His individual difficulties need to be addressed, or he will go to 2nd grade STILL not being able to read.
The hospital and doctors have never once said they were sorry. They feel the care they provided was adequate. This tells me that they are still doing business as usual and that means they are putting peoples lives at risk.

I am often asked how my health is today. It is compromised.

I have chronic abdominal pain. My belly is numb and has never returned to its original size. I do not tolerate food as well and suffer from "bathroom issues. Pre-surgery, I had a very physical job (I work at a community center) and lead an active life. Post-surgery, I have had to modify both. I can't teach the abdominal and aerobic classes I used to teach. I can't teach hula-hoop or double jumps or cartwheels to my preschool class.  I can't teach swim lessons the same way and can't perform some of the strokes to demonstrate to my swim team. It hurts to run, lift and stretch.

I am reminded every day, by pain, that I was a liver donor.

I am 90% of the girl that I was. I signed up for 100%.

              I find this completely unacceptable, and I will not stand for it.

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