In 1971 I was in our local hospital very near death when it was first discovered that I had fsgs. I was transferred to the cleveland clinic because I needed a kidney transplant. I was very ill, had low vital signs and the clinic did not want to admit me because I had no insurance. My stepfather had to threaten them to let me be admitted. I needed dialysis and this was the only place to go. Did they want my mother and stepfather to take me home to die? Even then money was their only priority, not human life.
I vomited continually, every 20 minutes or so. One of the nurses got tired of emptying puke buckets and told me if I threw up one more time she was going to let me throw up on myself. The next time she kicked the puke bucket under the bed and let me choke on my vomit because there was no one to hold my head up.
No one came to tell me I could have a kidney transplant. A group of foreign doctors stood over my bed from time to time talking in their own language and shaking their heads. I figured with the way I felt and the fact that my father had died the same way, that I was going to die too. They even sent in psychiatrists to ask me if I hated my father. I was just scared to death, but they didn't get it.
I was constantly scratching because of the poisons in my body and my hands were tied to the bed to stop me. I was 20 years old and this same nurse continually taunted me, asking me if I had any girlfriends. The nurse then proceeded to try and play with my private parts. My mother and stepfather brought these sick, perverse, and negligent acts to the proper authorities at the time and were told the nurse was fired. And low and behold, there she was 30 years later sitting in the hospital cafeteria big as life. She said that she was promoted to the surgery floor back then. Patients rights-yeah-you can do anything you want if you work there-they will just hide their mistakes out of view until the heat is off. Just like we have already said, your complaints are never really solved. No one is reprimanded there unless the error will damage the cleveland clinic. It doesn't matter if it damages the patient. They will just lie and deny those allegations.
In 1976, the blood lab ran two wrong blood tests that said I had hepatitis when it was someone elseâ€™s blood work.
In 1992 I ruptured my quadriceps tendon and was admitted to the kidney floor instead of the orthopedic floor. After surgery, I was in excruciating pain that morphine would not kill. The night doctor refused to do anything about it. He said he could not call an orthopedic doctor until morning. I laid there like that for 14 hours before one of the kidney doctors came in the morning who had had a similar injury and realized that the bandage was so tight it was pulling the incision open and causing the pain. So the interns at night were not even bright enough to realize what was wrong with me, and refused to find someone who could help me. Why are there even doctors there at night?.
In 1995 I ruptured my bicep tendon and was in there for outpatient surgery. Someone mixed me up with another patient and I was being wheeled into the operating room when a family member heard the surgical nurse say something about prostate surgery. They had mixed me up with another patient and were going to do the wrong surgery on me. The two operating rooms had to be sterilized again before they could do the correct surgery on the right two people.
I have at numerous times over the years called the on-call kidney doctors at night with questions about medicines for flu and numerous other illness and they never helped me once. First, I could not understand their language or they mine and they always said to wait until morning when my kidney doctor came in.Why are they even there if they know nothing?
In August of 2001, I was life flighted to the clinic for an aneurism in my spleen. I was again at deaths door. It took five vascular surgeons to save my life. I was in a coma for a month; my lungs and all my organs were full of blood. They said I wouln't recover for years and was in ICU. My kidney was flooded in blood and my urine was dark red. No one tells you anything in there except what could happen, not what is happening.
My wife was scared to death as it was, and questioned one of the interns about the state of my kidney transplant. He said the blood tests were not normal, but what good would a kidney be without a person anyway since I was in critical condition. No bedside manner or compassion from these people. It is almost pointless to have a regular doctor there because when you are in ICU and sometimes even on the regular floors your main doctor does not come to see you. They do not go on hospital rounds. Thne interns that know nothing about you do that. They were asking my wife questions about how much medication I took and what my blood tests usually run.
There were students working on me in there learning how to put leads in my neck to connect to the machines I needed to live. When they were done, my wife said there was blood everywhere, on the sheets and pillows and bed. They just left it there. My wife came back one day and found my hair and my beard just hacked off. They said they didn't want to bother with it. They never asked permission to do this and nobody else's hair was cut off. Then I developed pneumonia. They said they give it to everyone in there because it was much too cold. Then there was the constant statements about how I would recover twice as slow because my immune system was repressed by the kidney pills. this was never true in my case, but they love to fill your head with bleak predictions. That's one thing they excel at, scaring you to death.
I finally recovered enough to go to a regular room and the usual three-ring circus continued in there. I was very confused from being in a coma, not sure where I was at first, and very weak. I couldn't even get out of bed. Finally one of the kidney doctors notices that they are giving me three times the normal amount of blood pressure pills. That is why I can't stand up. What morons!
The vascular surgeon told me there was a fistula in my pancreas that he probably nicked during the emergency removal of my spleen; the only doctor on record at hellâ€™s clinic that has ever admitted he did anything at all. He said I will need some kind of tube to heal my pancreas and then turned me over to a general surgeon. The first question the general surgeon arrogantly asked me is why I didn't let him do the surgery. Didn't he read the chart? It was a vascular problem.
I had a jp drain in my side from the surgery that is pouring out large quantities of liquid. The liquid was brown and had a horrible smell. I told the doctor that I thought I had an infection, but he said my body liquid was that color because of a transplant. He obviously knows nothing about kidney transplants and he refused to consult with anyone about that either. He would spend his required 10 minutes with me, stare at the floor in his fancy leather shoes and tell me nothing. Finally, he decided I have a staph infection when I develop a fever. I am sent to infectious disease and I had an encapsulated abscess of staph infection in me that they are trying to treat with antibiotics. What I didn't know at the time was that I had MRSA. The antibiotics that they had to give me and the length of time it took to cure it could have had deadly side effects such as developing a flesh eating disease. I didn't realize this until it was all over.
I am getting no better after 6 months, I still have MRSA and a hole in my pancreas and the doctor decides to put me on tpn (total parental nutrition). I am fed in the neck through an IV. I have nothing to eat or drink for 4 months and still am getting nowhere. I try to find another way to help myself. I make an appointment with a local doctor in my town who could treat me, but as I have said, once the clinic does something to you, nobody else wants to touch you. He refers me to a doctor at the clinic who he went to school with and trusts.
I went over the general surgeons head and had a bypass stent put in near my pancreas to drain the fluid away from it and heal it. It is then that I realize what the vascular doctor was saying to me at the beginning-that I should have this done to heal my pancreas. The general surgeon is furious, in fact he cancelled the first appointment I made to have this done. He refused to talk to either this doctor or the infectious doctor about my condition, and said "I'm a doctor and don't need to consult with them". The famous teamwork!
I had another tube put is my chest in addition to the jp drain at some point since they found another pocket of abscess in my chest also. The stent is taken out of my pancreas after two more months and both the tpn doctors and the doctor who put in the stent ask the general surgeon what he plans to do with me. They tell him I can't stay on tpn forever; it was making my glucose go up to 350 and he wanted to continue it for another six months. I didn't need to be a diabetic kidney patient on top of everything else. I was just having more and more complications with tpn. I talked to the tpn people and we agreed that I should refuse to have it anymore and I put myself back on fluids slowly.
The general surgeon removes the jp drain in my side, and puts a different drain in. Brown liquid and staples pour out of my side and I have to drain it in a cup several times a day. During this time I had an ex-ray in radiology, where they laid one of these tubes on my stomach. The technician dropped the tube on the floor, picked it up and put it back in my side. I demanded to see the doctor there and they pretended not to know his name so I couldn't report him.
After eight months, I still had the abscesses and the doctor removes the drain in my side without even doing a cat scan. Within 24 hours, I have a fever of 104 and am back in the hospital. I begged not to go back there. There is nowhere else to go at this point and start over.The drain was the only thing that was draining the abscess of MRSA out of me; now it was building up inside of me. We wait four hours in the lobby waiting for a room with a fever this high.
They come in the next morning and put a tube down my throat, and tell me I am having surgery. I have no idea what is going on. I call my wife to get there immediately.
The doctor comes in and says he is going to do surgery and cut off part of my pancreas because it won't heal. I asked him how he even knew it was not healed; he didn't even take a cat scan. He just shrugged and said I can live with only part of my pancreas. Well that was it, my wife had him taken off the case and another general surgeon brought in on the referral of a nurse there. The original doctor then proceeded to wait until the room was empty to come in and glare at me and pace the room. I ask him what his problem is and he says "your wife is the one with the problem buddy!" He pokes his finger in my chest and says he is done with me, he has real patients to take care of.
The abscess took four more months to recede and my pancreas was in perfect condition. So the original doctor was going to make a kidney patient a diabetic and cover up his mistakes by getting rid of the evidence and the pancreas. No big surprise at the Cleveland Clinic. So it took 18 months to heal what should have only taken a few months because of the incompetence of the doctor.
In 2002, I have my gallbladder removed and am again in the hospital. My roommate is a minister. This time I have a male nurse from Iraq that comes in at night and preaches at us about how our country, (that has paid for his schooling by the way) should keep our noses out of his country, and is praising Saddam Hussein for his actions. He is asking if we believe in this Jesus person and his so-called virgin mother and is getting irate that our beliefs are not the same as his; yelling at a sick minister and myself. So now, we were afraid to go to sleep. The other nurses said they complained about him in nurseâ€™s school but no one would listen.
After that, we vowed we would get out of that hospital, thirty years of incompetence was enough. That place has a way of brainwashing you into thinking that you can only come there since you had the kidney transplant there. And in the beginning, in the 1970's, there wasn"t a whole lot of places to go. You shouldn't have to gear up for mental and physical battle every time you walk in the door there. By this time, we were mentally drained, untrusting and fearful of everything. I was only going there twice a year and still planned to leave at some point. I made the huge mistake of not leaving soon enough. I hope you don't do the same. If you decide to stay, may God be with you.
In 2005, our son Joe was diagnosed with fsgs. My kidney doctor did all of the preliminary work on him, and tried to forestall the need for a transplant with steroids. It didn't work. He had a peritoneal catheter put in in November of 2005 and was turned over to the head of nephrology for dialysis. We stayed because we thought they could at least do a kidney transplant correctly. You can see how wrong we were. And Joe and Chris paid the price.