Our sons kidney transplant surgery was done on April 6, 2006 by Dr. David Goldfarb and the kidney was dead, black and ready to explode and become septic in him by early May 2006. We have an un-cut copy of the surgery that was given to us by accident, his medical records, and people who were there at the time who gave us information. Our son and my sister were tortured by the Cleveland clinic and left to die.
Joe's surgery was to take place several weeks earlier but was postponed because they wanted it filmed for Unos. If we could have only known what would happen, we would have insisted it be done on the original date. Although the same surgeon would have done it, so the results would have probably been the same.
The day before the surgery Chris and Joe arrived at the clinic for the day before surgery tests. We stayed overnight at the clinic guesthouse for transplant patients so we would be there early in the morning for the surgery. This motel is a filthy place where everything is old and broken down. The showers don't work, the bedding is old and worn out, a totally depressing place. Only the wealthy can afford the international hotel at $300.00 a night.
After all the hoopla that we explained in the other pages was over, the day of the surgery arrived.
UNOS REGION 10 CLINICAL EDUCATIONAL FORUM
APRIL 6th and 7th, 2006
DAY I - Thursday- April 6 , l0:00 am - 5:00 pm
9.00- 10.00 Arrival / Registration /Continental Breakfast
10:00 - 10:05 Opening Remarks/ Day / Overview - Beth ChriSN Cleveland Clinic, Program
Coordinator Liver Transplantation
10:05 - l0:15 "Welcome" - Toni Morton, MBA, MT (ASCP)
LifeBanc, Community Education Coordinator
10:15 - 10:30 LIVE LIVING DONOR KIDNEY TRANSPLANT staff B
Meet donor and recipient / Case presentation
Audrey Caplin, RN, Cleveland Clinic, LDKT Coordinator
10:30 - 11.30 LIVE LDKT from the Operating Room
Donor Kidney Comes Out / Txp to Recipient
David Goldfarb, M.D. and Jihad Kaouk, M.D.
Cleveland Clinic, Renal Transplantation
1 1:30 - 12:30 BOX LUNCH / BREAK
12:30- 1:00 "Legal Ethical Issues in Direct Donation"
William Lawrence Esq., UNOS Director of Patient Affairs
l:00 - 1:45 HIV -Study for Liver and Kidney (Multi-center IRB Study)
John Fung, M.D., Ph.D * Cleveland Clinic Chairman, Departrnent of General Surgery and Director, Transplant Center
1:45 - 2:30 LIVE LDKT - go back to Operating Room - Implant
2:30 - 2:45 BREAK / SNACK
2:45 -3:30 "Predicting Outcomes in Kidney Transplantation"
Joshua Augustine, M.D., Asst. Professor CWRU
Department of Medicine/Division of Nephrology at UHHS
3:30 - 4:15 The Impact of Obesity on Chronic Renal Disease -Transplant Eligibility and Transplant Outcomes
Christopher Boshkos, M.D., FACP, Transplant Nephrologist
Summa Health System, Akron City Hospital
4:15 - 4:45 "Advanced Practice Nursing" - Jeff Arnovitz, MSN, CNP, CCTC Cleveland Clinic, Renal Transplantation
4:45 - 5:00 "Advance Practice Coordinators: They love me, they love me not" Mike G. Phillips,
BHS., PA-C -Life Connection of Ohio, Pres and CEO
5:00 - 5:05 Closing Remarks Day I / Evaluations - Art Thomson
Cleveland Clinic, Transplant Center Administrator
5:30 - 7:00 RECEPTION - Cocktails & hordoeuvers
DAY 2 - Fridav. April 7 f8:00 am - 2:30 nm)
7:00 - 8:00 Continental Breakfast
8:00 - 8:05 Opening Remarks/ Day 2 Overview - Cheryl Smith
Cleveland Clinic, Donor Awareness Coordinator
8:05 - 8:15 Welcome - "Don't Count Time- Make Time Count"
Ryan Zinn, M.S., P.E. (Heart Transplant Recipient)
8:15 - 9:00 "Total Artificial Heart" -Nicholas Smedira, M.D.
Cleveland Clinic, Surgical Director, Heart Transplant and Mechanical
9:00 - 9:45 'PRESUMPTIVE Approach to Organ Donation" - Sheldon Zink"Ph.D.
Center for Bioethics, University of Pennsylvania Medical School
9:45 - 10:00 BREAK
10:00 - 10:45 "Neurocritical Care" - Adrienne Boissy, M.D. (Article)
10:45 - 11.30 UNOS IT - Donor Net 2007 and Electronic Organ Offers Update
11:30 - 12:00 HRSA GRANT "Utilizing the Structure and Resources of a Multihospital Health
System to Increase Organ Donation"
Cheryl Smith, Cleveland Clinic Donor Awareness Coordinator
12.00- 1:30 SIT DOWN LLINCH with Txp Recipient or Donor at each table
1:30- 2:40 BEST PDSA Normal-Char" stvle=" text-decoration: underline from REGION l0 (10 minutes each)
I:30 "Donor Management Huddles"
Debra A. Cooper, MT (ASCP), MBA Quality Systems, LifeBanc
1:40 "Cardiology Consultation: A Team Player"
Ellen H. Blair, RN, BSN, CPTC
Procurement Transplant Coordinator, Life Connection of Ohio
1:50 "Peer Physician Education for Donation Best Practice"
Richard Pietroski, MS, CPTC
Associate Executive Director, Gift of Life Michigan
2:00 UHHS - TBA
2:10 LifeCenter Organ Donor Network - TBA
2:20 Lifeline of Ohio - TBA
2:20 -2.30 Closing Remarks Day 2/ Evaluations - Art Thomson
Cleveland Clinic, Transplant CENTER Administrator
ON BEHALF OF UNOS AND THE CLEVELAND CLINIC TRANSPLANT CENTER & THANK YOU TO EVERYONE WHO PARTICIPATED, ATTENDED, AND SPONSORED THIS EVENT MAKING IT A SUCCESS!
This is the original unos agenda for the day of our son's kidney transplant.
Does this sound like an operation or an all day party?
Box lunches and snack breaks. Meanwhile the surgeons are stalling in the operating room, making their mistakes and waiting for the kidney organizations to come back so they can go over everything they just did.
Maanwhile, the patients lie cut open waiting for the next step in a life saving operation. And the surgeons narrate the entire time so they are not paying attention at all. And here's a novel idea-could we possibly "educate" the spectators when the surgery was over? Then to literally add insult to injury, let's have some cocktails when we are done putting in the dead kidney and call it a success. After all, we can always hide it, this is tv and we can edit it. Well, it isn't hidden.
The filming on Joe began after the kidney was torn out of my sister.
Goldfarb is operating while Unos and a group of doctors and some Cleveland Clinic employees are observing. It is a live surgery so anyone can ask questions while he is operationg. Not a good idea at all, considering the stupidity of the questions being asked by the employees making the atmosphere less than serious. These questions should have been answered afterwards, but the show must go on! Goldfarb is visibly nervous and distracted while this is going on. He should have been used to doing surgery this way, but I guess not.
The observers are taking breaks during the surgery, and during this Goldfarb is still operating and has to go back over everything he already did when they return. It is very confusing to operate and answer questions at the same time. Goldfarb comments at one point that "We better move on to the next step while they're gone or well never get out of here.
It was not treated as a serious operation, it was nothing but showboating for the big shots. Goldfarb also makes the remark This exposure sucks and I don't want to go out and eat with these people tonight, referring to UNOS. Everyone who works there knows they must play the game according to the rules of the main players. If he cant take this kind of pressure, why is he the surgical director? You certainly don't get that job based on your surgical merits.
While Kaouk and Goldfarb are busy showing off for the camera, Goldfarb realizes later that no implant biopsy was done on Chris. A biopsy of Chris's kidney while it was still in her was supposed to be done before the kidney was put in Joe. This must be done as a final test to make sure the kidney is alright and free of disease. This is to protect the donor and the recipient. You don't want to transmit disease to the recipient. His comment is Christ! we missed that, and I'm not worried about it since this is television" and later tells the observers that the kidney was so perfect they did not need a biopsy. They had missed what was going on because they were on a break. Does he have ex-ray eyes? This is also against the law.
Two doctors assisted in this surgery, Dr. Mike Kleeman and Dr. John Kefer. Goldfarb is constantly telling Kleeman that he is walking around and not paying any attention. And you can see this in the movie very clearly, he is looking away from the operationg table. He tells him at one point sarcastically It's ok to participate if you will. Whats wrong with you anyway?" He says he is too tired because he has worked several shifts. That question should have been asked a whole lot earlier and he should have been dismissed and someone else brought in who would pay attention to what was going on. Does the Cleveland Clinic allow sleeping people to do serious operations? Obviously, yes!
Meanwhile the kidney is constantly oozing blood and they have to keep cauterizing the kidney. Goldfarb says Almost every needle hole is bleeding, and it is going on too long to be safe. It is just like kidney failure ooze and its been going on the whole case. Goldfarb is asking his assistants if they think the kidney looks any better after they constantly cauterize it. It was obvious he didn't like the looks of it. They could not get it to stop bleeding.
At one point, Goldfarb asks "What the heck is that fat in there"? Is this something we are going to regret? "Yeah I know Im going to regret it." The medical reports later on show a fat plane in this area that has deviated the bladder laterally to the left.
When they go to connect the kidney to the bladder the vein is oozing and hard to access. Dr. Kefer is fatiguing the stitch and Goldfarb puts a knot in the suture and puts the wrong stitch in there. He asks Kleeman ,the tired surgeon "why didnt you tell me I was putting in the wrong stitch? Well it will be my fault, its always my fault. First of all, doesnt Goldfarb know what stitch to use when doing transplants? Moreover, we cannot depend on sleeping assistants to tell him either. Obviously this is not the first time if it is always his fault. This is also the spot where the hematoma was in Joe, at the place where he put the wrong stitch. He also comments that he should have left the bladder up intact and apears to be not pleased with that either.
In the hospital stay after the surgery, Joe has a big hematoma in his side, a pocket of blood around the kidney (as shown in the picture on the home page). Goldfarb comes by to see him only once and the interns tell us that he may have to operate again to fix the hematoma. They do a scan of Joe on 4-09-06. We are not told the results. However, the medical reports later state that he has a hematoma at the site where the kidney was connected to the bladder and has high velocities of 200cm per second with mild vasospasm, which mean fluid in the area and a constriction that leads to necrosis (death of the kidney.)
Joe is given some units of blood and we are told it is all right to go home.
At home, he is very weak and pale from the first and the hematoma is getting larger. At his first post-op visit, Goldfarb says it is all right and it is a common thing. At the time we did not realize that the kidney was bleeding so badly during surgery.
Before Joes second post-op visit, he is starting to feel achy. We were told to call if he had any synptoms. We were constantly calling because one thing or the other was wrong. This time we called Richard, one of the transplant co-ordinators ,and he said he is alright and probably has the flu or something. Stay at home until his next appointment, which was in 2 days.
On the day of Joes second post-op visit he had a fever, was vomiting by the time we got to Cleveland, had a headache and was sore all over. Dr. Kefer came in the room said Joe needed to be admitted to the hospital and he told Goldfarb Dont you think so? Goldfarb answered, Yeah, yeah ok very nervously. I'm sure he knew what was wrong then.
We were sent down to the lobby to wait for a room to be available on the transplant floor. He should have been put in a room immediately; he was so sick by this time. Three hours had passed by the time we waited for his appointment and got down there to the lobby to wait.. He waited four more hours for them to get him a room. He was sitting in a wheelchair, very sick and dehydrated from vomiting, and still he waited. At one point Goldfarb passed him in the lobby and saw how sick he was and just passed right on by saying, Oh, they will find you a room. Didnt lift a finger to help in any way.
Finally, they put him in the bariatric unit because they did not have any beds on the transplant floor. They might as well have left him in the lobby. They do not know shit about taking care of kidney patients or even critically ill patients and they said so. It took them another hour to put in an IV for dehydration and to give him pain meds. His head hurt so badly by that time he was in tears.
Rappumune which is a drug he was taking for rejection was suggested at one point to be the cause of this sickness and was discontinued. The nurse on the bariatric floor gave him not one dose but a double dose of this because she made a mistake. She said she had no orders to stop this medicine. Of course, we tried to stop her, but she would not listen to us!
Joe was in this unit for two weeks while they ran tests and could not find anything to account for this kidney failing the way it was. His urine was decreasing and kidney function was failing fast. The nephrologists were called in because the surgeons had no idea what was going on, in fact, they told us they had never seen anything like this before. At one point, a urine sample was taken and his mother carried it down to the desk and it had an enormous white cotton ball in it that any fool could see was albium. But the idiots that they were said they thought fsgs (kidney disease) was coming back. It took 21 years the first time and it was coming back in a week. Cant they read reports? It clearly states the old kidneys were putting out more urine than the new.
He was always seen last in this unit also, because the doctors went to the kidney floor first to see their patients
Finally they get him on the transplant floor and the first night he is screaming in excruciating pain because his whole body hurts so badly. We were terrified that he was dying the way he was in pain. One of the nurses ran down to the pharmacy in the basement and got him a pain shot. This nurse has since left the clinic; most of them cannot stand what goes on in there. It normally takes an hour or two for medicine to come up from the basement. What is this? Patients can not even get a Tylenol or antacid, or a bedpan unless they wait two hours for it to come up from the basement. The nurses say they can not keep extra equipment in the units because there is no room for it. I guess it doesnt matter that things are not there that the patients need.
Do any of you have any clue what kind of mental state the three of us were in at this point? Our child looked like he was dying and no one knew what was wrong with him. Goldfarb was nowhere in sight; we had not seen him at all, even though we requested him to come and see Joe. His merry band of clowns were running around in circles trying to figure out what was wrong, when obviously Goldfarb knew that the kidney was injured and why.
After they had given Joe thymoglobulin treatments for "so called" kidney rejection he had severe pains in his whole body again. One of the doctors came in and told us Joe had serum sickness from the thymoglobulin they had given him. This is late in the afternoon and he is just screaming in horrible pain his joints hurt so bad. The night shift of nurses comes on duty and are giving him pain medicine, but not enough. We tell them to call the pain people and they say they cant do anything about it at night. The arrogant, rude head nurse at night, Holly. looks at Joe and says she can do nothing, and he better have a better attitude and speak in a nicer tone of voice to her. She does not care that he is in horrible pain.
Joe is begging me us to help him, and we can do nothing but watch our child scream in pain until morning when we can complain to someone. It was horrible, and we will never be able to erase the image of it out of our heads.
Morning comes and still no pain people, Joe is near fainting. His mother goes to the ombudsman to get someone to help him. Finally they are forced to come see him and he has to be on a strong narcotic in a pain pump to kill the pain. The fat, head night nurse, Holly then tries to get back at us by telling us we should not be in the room so much and she can throw us out. One of the nurses aides warned us that she was out to get back at us because we went to the ombudsman. Fat chance wed leave Joe to the wolves. We didnt budge.
The head of nephrology, Dr.Martin Schreiber, and Joe's former dialysis doctor, came and told us the kidney was severely injured and he did not think it could be saved unless there was enough of the good part left of it to have some function. We kept asking how it could have been injured and he simply didn't answer the question.
The infectious disease doctor came around constantly telling Joe he had ttp, a rare blood condition and it was fatal. Since they could not find any reason for this kidney failure, they assumed it was a blood condion that was killing the kidney so fast. It was later proven he never had this at all. Wouldn't it make sense to keep this from a critically ill patient until you knew for sure? And not have several different people telling you this ten times a day. The nephrologist, Dr.Brian Stephany, kept telling him it was severely injured and had no hope, and the surgeons said it was mild rejection. Can you imagine this onslaught of varying opinions? Can you imagine being 22 years old and having all this thrown at your constantly from different sets of people.
Below are the various tests they ran on Joe during this time. Although we don't expect anyone to understand their meaning, they are mixed in with the story of what happened to Joe.
On 4-26-06, they ran a renal scan to check for a urinary leak. The kidney was accumulating fluid and there was already a reduction in the amount it was excreting (putting back out). There was a large collection of fluid around the kidney, not caused by a urinary leak.
4-26-06 chest ex-ray. Fluid near the lungs suggesting pulmonary edema. This means his lungs are filling with fluid. He nearly drowned in his own fluid. We were not told this.
4-27-07 Ultrasound for aspiration of fluid around kidney. 15cc of fluid removed with a needle from biggest pocket in upper pole of the kidney.The fluid could not be completely removed because there was so much fluid in different places in him.
At this point, he still had a large hematoma. Why were the surgeons now not talking about operating to remove all this fluid and the hematoma? They were totally ignoring this at this point.
4-27-06 biopsy of kidney. Acute tubular necrosis which is damage to the tubular cells of the kidney.The surgeons are sure they can reverse this, the nephrologists are not. Constant differing opinions as if one group were in competition with the other.
4-28-06 angiography.The kidney is surrounded by fluid 3.5cm thick. The fluid is pushing the urinary bladder to the left. The two original kidneys are working better than the transplant. Transplant has uremia (too much fluid buildup) and renal under perfusion (high level of waste in the blood). This means waste is building up in the kidney and it is leading to kidney failure and sepsis (infection). Hematoma is causing pressure and obstructing the urethra near the bladder.
Joes stool samples are jet black during this time. Obviously has blood in him somewhere. His nose is also constantly bleeding. Dr. Kefer sends for an ear, nose, and throat doctor. Dont they know this is a sign of kidney failure? They are pushing water in him to try and force the kidneys to work.
His body is twice its size from fluid; his testicles are swollen to grapefruit size and are painful. His socks have to be cut to fit on his feet. Joes dad finally glimpses Goldfarb on the elevator and tells him he better put Joe on dialysis. Goldfarb says Oh ok thats a good idea and again nervously runs away. The blood lab comes in two times a morning because their orders are mixed up and they dont know someone else has already taken blood. All the patients there are complaining about this.
4-29-06 A dialysis catheter is put in his neck, because they took out the dialysis peritoneal tube that was in his stomach during surgery. Now he has to go on hemodialysis.
The dialysis catheter bleeds so badly for two days that they have to use large pads to sop up the blood. His mother is constantly changing his bed because it is full of blood. Nobody there will do it. We are constantly complaing until Dr. Kefer comes in Joes room and puts these big ugly huge stitches near the site of the catheter. Miss Brancatelli, who had put the catheter in catches wind of this and comes down when Kefer is done putting the suctures in. The two of them shove each other and have a shouting match over who should have put the stitches in Joe and she tells him they are the wrong kind. Right next to his bed, they are fighting! Months later when this catheter fails and is removed it leaves a very ugly scar from the stitches and is so deep in his chest that his juggler vein shoots blood everywhere and he has to be taken immediately to the ER. Just one more thing that the clinic caused. We are terrified that he bleeding so much it will kill him.
Every single thing that happened to him for the next 18 months was the result of something that place of hell did to him. We will hate that place until the day we die.
Joe is going to plasmapheresis 3 times a week ( a system that cleans all the blood in your body and replaces it) for ttp and rejection. He is having thymoglobulin treatment (iv's of an aminal protein for rejection) and dialysis. The medicine that was given to him before the thymoglobulin treatment makes him hallucinate, he is all confused and hes scared to death. I swear Goldfarb did all this just to say he went through the motions of doing what you do for a rejection. Although he already knew that the kidney was injured and not rejecting. He tortured him for no reason. Joe passes Goldfarb in the hall on his bed since he could not be wheeled in a wheelchair to dialysis and Joe asks him why this is going on and he says This is no place to talk about this and runs away.
At this point we demanded a meeting with the patient advocate on the floor at the time, and the head nurse on the day shift. We wanted all the clowns ( the interns and the doctors who were learning from the various departments) to stay out of Joes room and have Goldfarb come in to tell us what was going on with Joe. This is always a problem there, too many doctors that are learning coming in to give their opinions. No one would give us an answer; we realize now that only Goldfarb knew the answer. But he wasnt about to tell us the truth. He had a reputation and a paycheck to consider. We wanted the different departments to talk to one another and get their stories straight.
A group of fifteen people came in with Goldfarb and he merely stared at the floor and didnt say a word. The nephrologist Dr. Stephany. just talked and told the same conflicting stories we had been told all along, and that was it. Shortly after that the infectious doctor came to tell Joe he still had ttp when it was proven he didnt and we threw him out. They were still not together in their opinions. And they all wanted to make a buck by coming in there to spout off some bad news. At one point, Dr. Modlin, another transplant surgeon came in, who had nothing to do with Joe at all, to give him a thumbs up and tell him he would be fine. He didnt know anything about the case, but we were sure billed his $220.00 for the so-called visit.
We asked the nephrologist, Dr. Stephany to stop telling Joe his bad news every minute, Since he was stopped from talking to him when we were around, he'd tell him while he was on dialysis how bad his blood disease was (that he didn't have) and how injured his kidney was. He knew we weren't permitted in there, so he reveled in his torture in there. We called the head of nephrology and his boss, Dr. Schreiber. He came in and talked to us. We asked him to stop Dr. Stephany from talking to Joe this way. It was pure harassment and detrimental to Joes already low mental state.
5-11-06A vascular study of Joe's arms & legs. Negative on both counts for deep vein thrombosis. This is something your own body can produce to make the kidney fail. It was not Joe's body as the test was negative.
5-12-06 CT scan of pelvis.The kidney has no tissue enhancement and appears to be black. So the kidney was dead. There are increasing amounts of peritransplant fluid (fluid around the kidney) since the last exam and no collecting system dilation.The kidney is not producing urine. There are ascities, increasing amounts of water from the peritoneal cavity. There is edema, fluid under the skin and in the membrane anchoring the organ to the stomach. There are new amounts of plueral fluid under the lungs causing basilar consolidation. We knew none of this until we had the medical reports. All the updates we ever got were false and were told to us so the doctors could look knowledgable. They just looked like idiots.
Joe is now in danger of drowning in his own fluid. Although he continues on dialysis, they cannot get the fluid out fast enough. He has several gallons of fluid on him. He cannot breathe or lay down at night, he is so swollen. It takes two more weeks after he gets out of the hospital to get all this fluid out of him. He is asking his Dad why God hates him. He didn't understand at the time that it was hells hospital that hated and abused him.
This exam is done on 5-12-06 and we still see no sign of Goldfarb. he was oviously avoiding us. He is a coward with no compassion for anyone's agony. My son was laying there drowning in his own fluid and had a black dead kidney about to explode in him and kill him and Goldfarb does nothing.
At this point Joe has no acute rejection, and no cause for it. He does not have ttp, he has no vascular problems, only adverse events that happened in surgery that caused all these problems. Goldfarb could have admitted it from the first and saved Joe all this torture when he knew the kidney was never going to work in the first place.
Three days later, Dr. Fleckner is on rounds. He comes into to Joes room. He immediately orders a biopsy. He has to do it twice to get enough samples. More torture! The result is that the kidney is dead. Dr. Fleckner tells Joe the results while he is alone in dialysis. We find him crying in there. He should not have been told until someone was with him.
5-16-06 They do a renal scan and there is no flow or function to the kidney.
Dr. Fleckner advises an immediate nephrectomy, he says it is not safe to keep this kidney inside him.
So now Joe must have yet another surgery, only 5 weeks after the first one.
5-16-06 Emergency surgery done at 7:00p.m. Kidney was swollen and completely black. Removed carefully so it didnt come apart. The hematoma was finally removed.
Fleckner tells us we have a right to know what happened, and they will all discuss it. We never heard another word about it They just carve everybody up like a Halloween pumpkin and go their merry way. When Joe is discharged, one of the interns tells us that there was certainly nothing good to be said about what happened here. The patient advocate pushes the wheelchair down to the lobby instead of one of the nurses. He knew there was nothing but trouble in that hospital stay.
We are a transplant family, and we know how transplants are supposed to go, and this was not the way.
5-19-06 Goldfarbs final report. He gives a sugar coated version of what happened to Joe. He says there were no significant findings in the first cat scan of the kidney. Not true. What about the fat plane turning the bladder sideways, the hematoma, and edema in the transplant ,and the stranding and thickening of the ureter, and the fluid around the kidney? Then his famous statement about how he did everything, but the kidney failed anyway. He then states it is acute kidney transplant rejection without ttp. Nice fairy tale, but as far from the truth as possible.
On the first follow up appointment with Goldfarb after Joe's hospital discharge, he states that Joe is seeing the nephrologists for blood pressure issues. He is not. He was left strictly in the hands of the dialysis center in our home town at this point. Cleveland Clinic will have nothing more to do with this issue. We ask Goldfarb for copies of the surgical report. He tries to put us off. His assistant standing there tells him to print them off of the computer and he looks at him as if asking what is wrong with you?
By this time we have received a copy of the surgery on DVD and we know he is lying through his teeth to us.
We bait him by asking him what are we to tell people about what happened to Joe. No one ever did tell us what had really happened like they promised. He stuttered and stammered and said he would have to look back over his medical records and call us. Doesnt he remember what happened? Convenient amnesia. We knew he would never put anything in writing.
We tell him we are sure Kaouk sticking his arm in his rough dirty scrubs in Chriss stomach didnt help any. He just dumbly stared at us, shook our hands and said Nice to meet you as if he was leaving and ran from the room. He came back in a few minutes, possibly to call Kaouk on the phone outside or to pull himself together and ignore the question.
Two weeks went by and he calls us at home and tells us Joe had ttp and a rejection. His own report states he did not have ttp. We remained silent, biding our time to tell our story.
Joe was to have a second transplant in November of 2006. A friend of his was approved as a donor. At the last minute Goldfarb said the match was no good. We understood that the match was not that far off and it could have been done. What reason could have been behind that? Little did he know we would not have let him within ten feet of Joe much less operate on him at this point.
Joe was on dialysis 18 more months before his second transplant. It was a most heart breaking time for all of us. The disallusionment and sadness was almost overwhelming. We felt like we had been in a war and we had to bury our own emotions and help Joe. Chris is sick, Joe is sick and they are both young and suffering so bad from depression. Both he and Chris are on antidepressents. What is supposed to be a happy summer for everyone turns out full of anger and disbelief over what has happened. After the movie of the surgery was sent to Joe and Chris, the whole family was just shocked. After a while, we considered it divine intervention. None of us could have made it through this if we hadn't known what really happened. The clinic had gotten away with one too many things, and this time we had the proof.
We wanted him to have the second transplant done at UTMC. We took all his time from the UNOS list at the clinic and put it in Toledo. Their waiting list is much shorter and no one would go back to the CCF concentration camp.
How much more can anyone take in this chamber of horrors? We never left Joe the entire time. We stayed in his room sleeping on bloody floors the whole month after the first disastrous transplant. No one could be trusted in that hell hole. They will sneak in there in the night if they have to when the patients are unguarded by their family members.
The place is a dirty, filthy hole with needle caps all over the floor, bloody curtains in between the patients, and blood and urine on the floor. And this is a transplant floor! There are lung patients that need sterile air to breathe and heart patients that live there waiting for transplants. The rooms are so small the nurses cannot even get to the side of the beds with the equipment in the way. They are not enough nurses for the amount of patients and most of them have a bad attitude from having to work there and see what goes on. The cleaning people slosh a mop from a dirty bucket along the center of the floor and leave. We were cleaning the toilet with Clorox in there and one of the cleaning people got mad about it.
The doctors there just play God and decide who gets to live and who gets to die according to how high the stakes are in regard to reputation or bad publicity. Meanwhile, Goldfarb is living his nice little life with no cares in his nice home in a neighboring town.
Instead of spending money on the pictures in the lobby, and advertisements, it should be spent on the patients rooms, and studies of the terrible way the hospital is run. The dignitaries and celebrities get your so called world class care, but not anyone else. This is because they are the people most likely to donate to the hospital later on. So they are catered to because of their money. The hotels they love to advertise cannot be afforded by the families of the patients that are sick. Bigger is not always better. lobbies Speaking of the pictures at the clinic, has anyone ever seen the gruesome pictures in the skyway of their early 19th century surgeries. Someone who was injured there told me the place reminded them of early 19th century institutions where they experimented on people. I guess not much has changed there since that time, it's just covered now fancy and phony advertisements, but the same gruesome procedures.
There is lack of information between the doctors and the different departments. The patient gets lost in the shuffle. And you wonder why insurance costs are so high. It could have been the half of million dollars that was spent on Joe by the insurance company because the kidney died and he had to have additional treatment. And after they are all done running your insurance dry and nearly killing you in the process, they send you mailings asking you to donate money. There is no end to their hypocrisy. Then when you finally tell them you are getting the hell out of there, they still send you bulletins about events in the clinic like you are still a patient there. One hand doesn't know what the other is doing.
The new medical records they have in that place are also a joke. The doctor lets the nurse or secretary type up his notes, and since they are not in the room, something gets lost in the translation. They either skip parts altogether, or their translation of the notes is not recorded in the same way the doctor meant it. What a screwed up mess. They have even scheduled the wrong tests because they can't read the doctors writing.
We have moved on to UTMC where the people there are concerned for their patients. There is a kindney co-ordinator you can call 24 hours a day 7 days a week for all the patients no matter how long you have had a transplant.
We waited until we knew Joe was well and we could move to another hospital before we brought this matter up with Cleveland Clinic.We went to the ombudsman, which is the place to go with your complaints. Other people we have talked to have also gone this route, and although they tell you they are going to do something about your complaints, nothing really is ever solved. They supposedly investigated this matter, but in reality probably really looked for someone to blame.
After several months of their "investigation" we were called to the clinic to talk with one of their main attorneys. They did not deny that this happened, nor did they admit it. We had a report we had written about what had happened. The lawyer said we appeared to be very angry people; and that maybe we should see one of the psychiatrists at the clinic to help us. Yeah right, someone to tell us nothing happened at all. Or maybe we would like another doctor to talk to us and tell us what happened. We just gave her a report that told what had happened; we didn't need more people to lie to us.
Other than that there was nothing they could do for us. SHE SAID LET ME TELL YOU THIS IS NOT THE FIRST TIME THIS HAS HAPPENED AND IT WON'T BE THE LAST, YOU JUST HAPPENED TO BE SOMEBODY WHO FOUND OUT ABOUT IT. In other words, so sad, too bad.
Local newspapers in Cleveland have personnel that sit on the board at the Cleveland Clinic. The local news in Cleveland and their newspapers will not print anything bad about the clinic.
We contacted Unos about this matter, and they said that they never observe surgeries and were confused about why their members were even at the clinic. And although they are sorry for Chris, nothing has really been done about this.They also have doctors from the clinic that sit on their board from time to time. We have had no answer from Kepro, a medicare organization or The Joint Commission which oversees hospital behavior. We really didn't expect any answers. But we did go through the so-called proper channels first. These organizations are all in business with each other in one way or another. Money is the name of the game.
Wasn't it bad enough that our family had to go through the emotional turmoil of another member having kidney disease, and involving Chris who didn't have it, but then to have to go through all the horrible things they did, and just be ignored? No justice or human compassion there. Just close ranks and protect themselves.