Subscribe to this Feed by Email
Answer: Unknown
My Guess: Very few
If transplant surgeons truly believe that living organ donations are of "minimal risk" as they claim, I would be curious to know how many actually have stepped up and offered their own organs to deserving patients. Now that would be an interesting survey... I was a living liver donor in October, 2002, at one of the top hospitals in Manhattan. my surgeon will be known as Dr. K. I donated my liver to my mother; her surgeon - and the department head - will be referred to as Dr. A.
I want to make it clear, I am not against living organ donor operations. Who wouldn't want a chance to try and save a loved one?
My goals in this letter are the following: to ensure that potential living organ donors are apprised of the very real risks (some long-term) involved in these procedures; and to create awareness of the need for a "safety net" for the organ donor if things go wrong.
The potential living donor must be told the realistic facts and/or percentages of the possible negative effects that may happen. Not once, before or after the my operations (the original donor operation and two incisional hernia operations I had within the following 8 months, the last operation a 10" mesh was implanted) was there talk about ill effects from scar tissue. Every operation (especially in the abdomen) creates scar tissue. This scar tissue can cause many different types of problems such as trapping a nerve (neuroma) or interfering with your intestines causing other problems. I was told by pain specialists in New York and Los Angeles these are the reasons for my pain today. Unfortunately, I was also told by top surgeons at Cedar Sinai, UCLA and Montefiore (I was seeking a surgeon to operate and fix my condition) that no responsible surgeon would operate on me in my current state with a mesh. It would be too difficult to fix and an operation may only cause more problems and certainly more scar tissue. Only in a life threatening situation such as a full bowel obstruction, will anyone operate. However, that would mean that I (or any other patient in this predicament) would be at the mercy of whatever surgeon was on duty at the emergency room of whatever hospital was closest. There would be no time to set an appointment for an operation with any specialist in that area (dealing with reconstructive surgery, meshes, adhesions, organs, hernias, transplants, etc.)
There are presently studies about long-term effects on living donors. AtoAll is one study and, in fact, Dr. A is associated with that study. I wonder why I was not included since I was told many times by the staff of the Transplant Department, that I was the only liver donor at that hospital to date, who has experienced long-term complications. I would think it would be difficult to overlook me.
Secondly, there has to be more of a "safety net" for any living donor. This includes the cost of any follow up operations due to the original donor operation. My Transplant Hospital did cover my expenses for the next two operations, except Dr. K's office charged my health coverage in the second hernia operation for over $10,000. When I pointed this out to him, he answered something in this tone; "My office made a mistake. You have a million dollar limit on your policy. Nothing to worry about." Unfortunately, it is a concern due to how health companies will perceive you as a risk.
There must be a guarantee that the donor will not lose or be without health insurance due to the health insurance companies classifying you as having an pre-existing condition. That is my situation now. In countries with socialized medicine, such as Canada, that is not a problem for donors. However, the U.S must fix their health insurance situation.. That is why it is imperative that you send a letter or call your congressman or senator. Only by public (and media) pressure will the government "eventually" make a change. And only by having these changes made, will future potential donors feel secure and confident enough to decide to donate an organ and help save someone's life (maybe yours.)
As I mentioned above, I am not against living organ donor operations. Who wouldn't want a chance to try and save their child, sibling, parent, friend (and in some amazing cases, donors do it for strangers), etc? However, they should be informed of the real possibilities of long-term effects and should have a safety net for them. If I knew all these facts before I had donated, I don't think I would have changed my mind. I was determined to save my mom's life. However, I am certain my mother wouldn't have allowed me to take the chance if she knew all the facts. We would have been forced to take a chance with the very disorganized and inefficient cadaver organ distribution system in place. I was told by the doctors that my mother would never receive a cadaver liver in time, so I really had no choice unless I was willing to watch her die a painful death.
I'd like to end this portion of my letter with a prayer for all of you who have a loved one who is sick and for all of you who have participated in the organ donor process, whether as a living donor or a recipient.
MY PERSONAL EXPERIENCE AND OTHER PROBLEMS WITH THE ORGAN DONATION PROCESS
This second part of my letter will deal with more specific issues and situations that I experienced with hospitals and doctors. It is more a cathartic exercise for me to finally speak out about some if these issues. We must first realize that we are dealing with an industry that has over 100,000 admitted accidental deaths a year (almost twenty times the number of U.S. Military deaths in the entire Iraq and Afghanistan wars combined to date as of this writing.) This is not counting the number of mistakes where people do not die, but still suffer. No other industry could or should continue to exist with these many mistakes without addressing them.
As I have mentioned, I was a living liver donor for my mother in 2002. She was dying from cirrhosis of her liver due to hepatitis C which she had contracted from a blood transfusion in a previous surgery many years before. The transplant operation went fine and the right lobe of my liver was doing well in my mom. Unfortunately, she never got well enough to be released from the hospital and ended up dying five weeks later from a brain hemorrhage. The hospital health care worker who was supposed to be in the room at all times watching my mother, had "stepped out for a moment." I tried to get her medical records, but the hospital makes it very difficult. They said only a lawyer representing her will could order it, not her sons or daughter. Even to get my records was difficult, only to discover the records were shockingly incomplete in recording the events that actually happened to me.
First, I would like to say that all the pre-operation medical procedures (MRI, Cat Scan, sonogram, Xrays, blood tests, etc.) are very limited in the information they give to the surgeons. Not until the surgeons open you up, do they really know what your liver looks like. I underwent all those preoperation procedures and the doctors still didn't know that I had two veins that went into the right lobe of my liver until they operated. My brother and sister were informed this was the reason my operation was taking longer (approximately 2 hours longer.)
Afterward, I asked Dr. K why he didn't know about the anatomy of my liver. His answer was the preoperative medical procedures are never conclusive. I accepted that fact until later when I was complaining about pain. They did a sonogram on me and said they found nothing wrong, that I was fine and should continue all normal activities. So apparently, the medical tests are conclusive or inconclusive at the convenience of the doctors. I've met used car salesmen that talk out of both sides of their mouths, but these are surgeons we trust with our lives and the lives of our loved ones.
I was told before my surgery that there was a five to 15% chance of morbidity. Small things that were easily fixed, nothing long-term So when I had water retention due to my liver's response (30 pounds over my pre-operation weight), I fell into that category. Studies now show that morbidity rate can be well over 50% and there is a chance of long-term effects. Dr. K asked me after 6 days if I was feeling well enough to go home. My feet, legs, abdomen and testicles were still holding over 25 pounds of water (not a pretty site.) Even that used car salesman I mentioned would know better than to send me home. That was the first time I started to question Dr. K's judgment. When Dr. A (top surgeon of the transplant team) looked at me, he immediately said that I wasn't going anywhere in that condition. (Dr. A's bedside manner and judgment were always excellent.) Why did Dr. K want me to go home in that condition? I would hate to think he was concerned with health insurance issues and how it affected the profit margins of the almost half a million dollar operations (mine and my mother's combined.)
After I was released and went home, I told my sister (who was going to visit our mom in the hospital) to tell Dr. K that my wound was looking discolored. Without seeing me (a pattern with this doctor and some others) Dr. K told my sister there was nothing to worry about. When I came to see him for a scheduled appointment several days later, he literally yelled at me in front of my brother, saying "What have you been doing?" when he saw my incision was infected and he had to squeeze the puss out of it.
Another important topic is how the doctors and their staff treat you once they have finished taking your donated organ. The short answer -- they don't want to deal with you after a certain point. They will responsibly set up several follow up appointments with you, but easily get tired if your needs exceed that time. The hubris of the doctor/surgeons and nurses can be shocking. They will say (sometimes over the phone without seeing you) that you are fine and anything such as pain is probably in your head. This was told to me several times by Dr. K., the nurse coordinator and Dr. H (the organ transplant team psychiatrist.) However, none of them apologized and admitted they made a mistake after I had two more surgeries. You would think they would listen to patients' more seriously, especially me since they were wrong twice and I needed two additional operations. My last phone message left for Dr. H was in 2004. I asked if she could call back and tell me if "adhesions or scar tissue" have been a problem for any donors. She never returned my call.
Even after an in person checkup by Dr. K, he told me I was fine and to do all physical activities I would normally do. However, two months later after Dr. K and Dr. M (an associate of his from a previous hospital) finished implanting a 10" mesh in my abdomen due to multiple hernias and weak spots in my fascia, does he ask me, "Wayne, what have you been doing?" Again, the inference was I was to blame when all I had been doing was listening to his advice and trying to live my life normally. Dr. K needs to operate on himself to remove that foot from his mouth.
I must mention Dr. M's inability to listen to patients and to learn from her mistakes. I warn the squeamish to stop reading here. I informed Dr. M that a catheter should remain in my penis after the operation since I had needed a catheter in my previous seven abdominal operations to void. She agreed. However, when I awoke there was no catheter in place. When I couldn't urinate (what a surprise) and they had to insert a catheter, there were specific instructions from Dr. M to only insert a catheter if needed until I voided, then to immediately remove it. That was her second mistake. When the nurse incorrectly tried to open the second catheter inside me (because I still could not urinate), she had not inserted it far enough and it ruptured my penis. The combination of my blood and my screams made a resident run into the room and take that one out and replace it later since I still couldn't void. When I confronted Dr. M about this, she said her experience was that a catheter would not be needed. Did she admit she was obviously wrong or apologize - Never. I worry about a surgeon who is too stubborn or arrogant to learn from her mistakes and thus, exposes future patients to harm.
There is too much to say in one letter, so I will end here. The main thing is, the system has to be changed for donors. Secondly, some doctors/surgeons need a refresher course in "bedside manner." I will conclude with one last Dr. K statement. On the phone after I told him of my constant pain after every meal and after every normal physical activity, he quickly asked, "Wayne, it sounds like you regret ever donating your liver to your mother." Not wanting to curse, I remained quiet. However my answer to his question was and still remains, "Yes, I do regret having the operation. But only because you, Dr. K, were my doctor."
0 comments:
Post a Comment