Joe's Aunt Chris, was chosen to be our sons kidney donor. I have three half sisters who do not have this disease because they have a different father.
At the Cleveland Clinic, there is a shortage of nephrologists to see potential donors and a part time live donor kidney transplant nurse; who is only there three times a week to answer questions, so the process was a long one before Chris could be seen and approved to be a donor. We lost several donors because the return calls were sometimes not even answered or took forever to be answered. Some of the donors backed out because they didn't feel comfortable with this situation; it seemed like a part time business. It is our opinion that this should be a priority since there is such a shortage of kidney donors. They love to advertise their transplants, but you can see by this that kidney transplants are now on the back burner. They don't waste any money staffing that department.
The surgery was done on April 6, 2006 with Dr. Jihad Kaouk as the urologist who operated on Chris. She was considered a good candidate for laproscopic surgery. They told her she was disgustingly healthy. She was told that a silk bag would be inserted in her to remove the kidney. Cleveland Clinic's website even shows a video clip of a laproscopic kidney surgery with the kidney being removed with a silk bag. Dr. Kaouk told her there was nothing to worry about, he could do this in his sleep. That was the extent of what he told he as far as what could happen.
Chris told them before the surgery that she was willing to have an open surgery if they needed to. Her only concern was for Joe to have a good kidney. The surgeons are able to switch plans from laproscopic to open surgery at the last minute if it is necessary. But the show must go on and the observers were promised a laproscopic surgery, so that is what they did.
The filming of the surgery for UNOS on Chris began with the kidney being removed. They did not use a silk bag to remove the kidney and the cut was made farther down on her stomach than she was originally told. Dr. Kaouk reached his arm all the way up inside of her to remove the kidney. He had on short surgical gloves and the rough material of his scrubs scraped the inside of her as he ripped out the kidney. Joe's, surgeon, Dr. David Goldfarb was standing there waiting for the kidney and he say "it's a girl" like it's a delivery and they both laugh.
In the surgical movie one can see blood on the arm of Dr. Kaouk's scrubs. And this is supposed to be minimally invasive surgery? It was plain showing off with no concern for the patient at all. Kaouk is seen in the surgery movie standing next to Chris telling how quickly donors heal and how long they are off work, neither of which turned out to be true for her. He stands there bragging while his assistants close her up after the horrible surgery he just did on her.
Days after the donor surgery, Chris was still in pain. The male nurses on the floor said she was a big baby and couldn't tolerate pain. She stayed in the hospital longer than normal for a donor and still couldn't keep foods down before she went home. Her medical records state she was eating normally when she was discharged. She was still bloated and sick.
She continued to have swelling in her stomach in the next few weeks. In her few post op visits, her incision had to be opened at the end to drain out a hematoma. Kaouk told her she still had gas in her from the surgery. In laproscopic surgery they fill you with air. He would not listen to her complaints that this was not normal. He totally ignored her and ordered no tests to find out what was wrong with her. Which is very odd for the Cleveland Clinic. They usually want to run a load of tests and refer you to other departments and doctors to make more money. They just continued to give her percocet for the pain.
Finally, she went to our local hospital to find out what was wrong with her. They did a cat scan on her and told her she had lymphocele leaks (white fluid filling up inside of her abdomen). The medical term of what was wrong with her was chylusacites with a pelvis midline collection.
Then of course, the clinic had to do their own cat scan even after our hospital already came up with a diagnosis. They never trust the local hospitals to have any medical knowledge. Besides, it's more money for them to run tests in their own hospital, and double charges for the insurance company. Of course, they came up with the same diagnosis. Then Kaouk was forced to see her. She told him her incision was puffy and he didn't even look at it until Chris forced him to. She also had a staph infection. The infection was not a surprise considering the way the kidney was removed and his bloody scrubs. Kaouk had his nurse put a needle in her stomach and take a sample of the fluid in there. He asked her if she was allergic to any medication and she said penicillan. He wrote the prescription and her sister Norma took it to the pharmacy. The pharmacist called a half hour later and said you can't give this to your sister, it is pure penicillan and it will kill her.
She continued to fill up with fluid and had to go to Cleveland several times a week to have her stomach aspirated (a needle stuck in to draw out the fluid).They didn't even numb her stomach before they did it. They would make her sit in a wheelchair in radiology for hours waiting. She was in such pain. She couldn't eat or lay down at night because she was so full of fluid she couldn't breathe. Still Kaouk did nothing for her. He told her it was no one's fault - not his and not hers. What a boldface lie, not his fault.
Finally, we got her another doctor, since Kaouk was doing absolutely nothing for her. We decided to get a vascular surgeon for her from the clinic because we knew from experience that if we didn't, the clinic would say that someone else injured her and not them. And also, no one else will do surgery to repair you if the clinic has injured you in the first place. He decided she needed additional surgery to repair the rips inside of her. He also told her he was tired of always having to repair all the other surgeon's mistakes.
Chris was told by her kidney co-ordinator that this was not the first time that this had happened to a donor. She gave Chris the names of several other people that this had happened to, which is against hippa laws.
This was all going on at the same time Joe was in the hospital so sick with a dead kidney inside him. They had the entire family worried and sick about what was going on and how this happened. We were taking care of Joe and Chris's sisters were taking care of her.
Chris had her second surgery, and had numerous tears inside of her. She is filled with mesh and has lost her ability to have children as a result of it. The clinic's new publicity slogan ought to be "DONATE LIFE AND WE WILL STEAL THE LIFE OF YOUR UNBORN CHILDREN IN RETURN".They killed her organ and took away her God given right to have children, so in essence they killed them before they were born also.
She was barely awake after the surgery when Kaouk called her and told her she had to go on tpn-total parental nutrition. She was crushed. She thought the surgery had healed her. She ended up being on this for 2 months. She was being fed through a tube in her neck. She couldn't have any food or water for the entire summer, since this was the only way to heal the inside of her. She was pretty much stuck in the house so she didn't get too thirsty. They told her she could work this way. She worked in a hot factory. How could she walk around with a bag on her and dying of thirst. And how sanitary could this be. Obviously the people at the clinic had never been on tpn.
She was depressed that they had done this to her, that they were ignoring her and she really didn't talk to anyone during this time. I can't believe the horror of all this just because she was kind and unselfish enough to give a kidney to our son. We wondered how we would ever get over the guilt of it, even though it was the Cleveland Clinic who did it to her and not us.
She was finally sent back to work after six months, instead of the two to four weeks they originally told her she'd be off work . She lost her job almost immediately because she was off too long and her position was not held for her. It has set her back finanacially. The recipients insurance will only pay for the donors medical bills for several months. Her second surgery was not covered by Joe's insurance and her insurance company refused to pay for it because they said it was the Cleveland Clinic's fault. Then nerve of all nerve, the Clevand Clinic keeps trying to garnish wages she does have since she cannot pay her bill, forcing her to the point of bankruptcy. This is beyond cruel. Do they have no humanity?
She tried on several occasions to get a lawyer to take this case and every one of them stated that they wouldn't sue the Cleveland Clinic, until she finally got someone in Cleveland to take the case. After a year, he mysteriously says he can no longer represent her. He says he will have to put it off for awhile since his wife is sick and in the hospital. I wonder what hospital she was in? Then he says he lost her medical records. We have found that a lot of lawyers are rewarded for not going against the clinic.
That summer was supposed to be happy since Joe and Chris would have been well and happy. Instead, Chris was sick and Joe was on dialysis and they were both on anti-deppressants. They took two young innocents who had never had surgery before and left them with nightmares.
We have since learned that Dr. Kaouk is not even board certified and that Chris is not the only one that has been injured by this doctor. There are countless other people that have been permanetly injured by this man in many areas of his "so called" expertise.