Last updated: Jun 25, 2001
DISCLAIMER
I am a patient, not a doctor
This information is based upon my own experience
Any medical advice should be approved by your physician
This is the story of my two failed transplants and their consequences.
Names were omitted to protect the innocent.
The story begins in Israel, but this is insignificant. It could have happened anywhere.
Medicine in Israel is generally good and many successful transplants have been performed.
My transplants failed mostly because of bad luck and the state of medicine in the mid-80s.
It is not my intention to discourage other transplant candidates. I am on the list for a third one.
Humor was used to compensate for the horror, but horror it was...
1960. My father died from PKD kidney failure. He was 48 years old. A couple of months before, he was hospitalized for two weeks, but nothing was found. And if it had been found, nothing could have been done, dialysis wasn't available yet.
1962. I had a kidney infection with kidney stones. One week in the hospital. IVP reveals: possible PKD.
1962 -1974. Nothing to write home about (concerning my kidneys). Have fun. Drink a gallon a day - everything goes: Coke, juice, milkshakes, the more the better.
1974. An insurance agent tries to sell me life insurance. He insists that I take a physical check up. My BP: 140/100. I tell the doctor all about my medical history. The agent doesn't talk to me anymore.
1974. Urology. Creatinine 1.8, Underlined twice. First time to hear this term.
1974. Nephrology. Houston, we have a problem. A PKD time bomb ticks inside my body.
1974-1982. Follow up every 6 months. The doctors discuss my labs among themselves. They don't tell me a thing. I don't know what to ask. I have learned that when the creatinine level reaches 10 or more, dialysis is unavoidable.
I like to drink and I am told to drink, beverage of course. In the office, I have a fridge in my room, full of cans.
Two of my uncles are already on dialysis, but they don't want to talk.
1982. My creatinine is 6. My wife is expecting. I thought that the creatinine rise was linear and that I had eight more years to go. Wrong. Now I know that the rise is reciprocal.
1983, Jan-26. I have a healthy son. 4 kg (8.8 Lbs.). My wife is doing okay.
1983, Feb-1. I have blood in my urine. Hospital, Nephrology. IV in my arm, my kidneys are rinsed. The weather is cold but the heating does not work. I catch a very bad cold for a month.
This treatment continues every day throughout February.
While sitting there with the IV, I translate a program for them from one flavor of Basic to their TRS-80. They think that I am a genius.
1984, Jan-14. Creatinine 10. Shunt surgery. This is my first operation. Local anesthesia. I hear and see everything. The surgeons tell jokes, answer phone calls, listen to the radio. Stupid commercials. However, they did a good job. The shunt is still working today, at the end of the millennium.
1984, Jan-19. I still have stitches and my left arm is sore. A TV crew tapes a program about the industrial robot I developed. They don't notice the sore arm.
1984, April. Creatinine 13. I am sitting with my doctor and his assistant. "Put him on the transplant list" he tells her. Nobody asks me. I am a patient, not a person.
1984, May. I take all the tests, blood, urine, chest, stomach - both sides, how fun. I am prepared to wait a year or two for my transplant.
1984, Friday May-11. They call to remind me that one more blood test is required.
1984, Sunday, May-13. Last blood test taken
1984, Monday, May-14, 7:00 pm. We are home eating supper. My daughters are with us. Phone rings. We have a kidney for you, come right now.
My brain starts spinning. Next week I have a show. The robot is going to be displayed. I am the only one who can demonstrate it... I am coming.
My sister-in-law comes and takes the kids. She returns my daughters to their home and our baby stays with her. I go with my wife to the hospital. She cannot drive because of the excitement. I drive, cool as a cucumber.
8:00 pm. IV is poked in my arm. We rush to X-ray. "Who is the patient?" asks the tech, looking for someone on a stretcher. I am the patient. Back to Nephrology. Hurry up and wait. Cyclosporine (liquid) with milk. First time I hear that name. They let me use the phone to update a co-worker. He is astonished. He never guessed that something was wrong with me.
10:00 pm. Operating room. I meet the transplant surgeon. Never seen him before. He is nice. I tell him that I cannot hold my pee for more than 2 hours. He calms me down.
I lie naked on the table. Blank...Blank...Blank. Three hours. My wife is waiting outside...
May-15, 2:00 am. I wake up. Lights. Tube in my throat. I make gestures to catch somebody's attention to remove the tube from my throat. Not yet. The surgeon comes, smiling. "You have a new kidney." I didn't know that. 10 more minutes. The tube is out, Oxygen is in. I am freezing. My body shakes, my teeth chatter. They put blanket after blanket on me.
My wife is allowed to see me. Slowly, I come back to my senses. I feel a tube in here a catheter in there. I am a newborn with a new kidney.
4:00 am. I am in my room. Old, one story building from WWII. Two in a room. Cannot sleep.
7:00 am. Now I feel the pain. They give me pain shots in the thighs, every 4 hours. Trouble is, the pain returns after 3 hours.
My Ex comes to the hospital, not to see me. She is worried about the alimony and a pending financial settlement. Thanks to my kidney failure the settlement is executed faster than I expected.
I am in bed, cannot move. I made urine before, I still make it, I feel no difference.
The doctor comes, he is happy, me too. Everything functions like a clock. That's what I thought, until I learned more.
My wife is warned that since I am more sensitive to infections she has to wear a lab coat when entering my room.
A technician fixes the air condition. He does not wear a lab coat. Same with the cleaning lady.
7:00 pm. I am hungry. Get bread and jam. The nurse wants me out of bed. My wife helps. I stand up, turn green and sit back on the bed. Retry. I am standing. Weigh myself.
May-16, 7:00 am. Mapping of my new kidney. The patient with the twin kidney and I are transported with other various patients to the X-ray building. What about 'more sensitive to infections'? Mapping is OK. I carry the container for urine collection with me.
Back in my room. Blood test. Half a day is over. I help write the test results in the chart.
They have yet to hear about computers. I learned the meaning of the tests and the acceptable range for each.
May-17 to May-24. One tube after another is removed from my body. Creatinine levels are down every day. My urine begins to smell, my weight goes from 85 to 80 kg.
All other patients do not feel well. I feel ashamed that I am OK.
May-23. I get a pass and go home for a few hours. The moment I put on my own clothes I feel better. This is going to happen again and again, after every stay in the hospital.
What if a cop stops me? "He can't, you are the hospital's property". Imagine telling that to a cop...
May-25. I go home for the weekend.
May-27. Blood test in the hospital. Back to work.
May-28. Caught a cold. X-ray. Nothing serious. Can I lose the kidney to a common cold?
May-29 to Jun-9. Back to normal. Don't celebrate yet. The Cyclosporine works. I gain one kg a day. I grow more hair here and there.
Jun-10. Blood test. Near the shunt. Long bleeding, partially inside. I have a hemotoma. Temperature 38 C (100.4 F). Fever pills. Back home.
Jun-11. Temp 38. Fever Pills. Back home.
Jun-12. Temp 38. Back to the hospital. I have a rejection.
Jun-12 to Jun-27. Can't remember all details.
My wife is there every day, all day. When I feel real bad she stays for the night too.
All of a sudden, there are two transplant Doctors. They don't talk to each other. They give contradictory instructions to the head nurse.
My doctor fights the rejection with medication. He also sends me to radiation therapy.
Jun-17. I am eating lunch, my wife is there. The head nurse and the other doctor's secretary enter the room and close the door. "We won't do it for anyone else, but we care for you," they tell me.
"We want to tell you something," to my wife. "If you want him alive, take him away from here, to another hospital." My wife is speechless. I continue to play with the fork.
My wife tells our doctor that we want a second opinion. He suggests the transplant doctor from the other hospital. The next day he comes and they both agree on my treatment. I receive Meticorten (Prednisone) for the rejection, 200 mg a day, taken with food to protect the stomach.
I have CMV. Back then - hard to detect and no cure.
My temp reaches 39 (102). I urinate a gallon a day, lose weight 1 kg a day.
I am in bed all the time. The Meticorten pills burn me from the inside. I also take Zantac to keep a possible ulcer away. Zantac is a new and expensive drug then. Not sure if my insurance will pay. They do.
The springs in my bed are loose. This bed is also from WWII. To change position one has to crank it. I have a horrible backache. At last I complain and they put a plywood board under the mattress. "Why didn't you ask before?" How could I know that among the syringes and catheters they store a plywood board?
Jun-26. Fever close to 40 (104). The kidney or your life. I try to save both. I know how to fight a fever. A kettle of hot tea with fever pills. Fever wins. Kidney loses.
Jun-27. Bye bye kidney. Second surgery.
Almost all blood tests are out of range. Some are in the stratosphere, others are in the Dead Sea. My state of mind: kicked out from heaven into hell.
All other transplant patients go home with their new kidneys.
My doctor has a 90% success rate. Mine is 100% failure.
The person with my twin kidney died within a few months from cancer. I was luckier...
Jun-29. Hello dialysis.
First time that I have a close encounter with the machine. See the needles, scary. Needles are in. Not so bad. 3 hours. Needles are out. Gauze and tape. Elastic bandage over my arm. Trouble is, my platelet count is close to nothing and bleeding continues under the skin. Three hours later, the bandage is removed, my arm swells like Popeye's after eating spinach. My wife sits and cries until the doctor comes and calms her down. My arm remains blue for a month.
Because of the swell in my arm no blood vessel can be seen. No dialysis for 5 more days.
My white blood cell count is 1000. I receive tons of antibiotics. Cephamycin. The doctor pronounces it as a name of a snake. The antibiotics inspire fungal infection in my mouth. White stuff tastes like flour. Four anti-fungal pills a day.
Rash is developed, all over my body. Antibiotics moratorium for 3 days. Rash is gone.
My doctor comes every day to tell me that my Leukocyte count has improved a little.
Because I can't be dialyzed, my potassium is checked every evening. I don't eat and it is stable.
One evening - no potassium results. We wait and wait. At last my wife asks the nurse. It was OK, never occurred to her that we were waiting...
Jul-4. second dialysis. A doctor comes to search for a blood vessel. He finds one, barely.
Second dialysis runs fine. This time a nurse holds the gauze for 30 minutes.
My temperature is 39 to 39.5 (102 to 103). It is summer and I sit in my room with shorts only.
Jul-7. Unexpected dialysis in the morning. Third surgery. They find oozing inside my stomach.
Every day I have a chest X-ray. I am on a stretcher, waiting.
One day I faint. I say to my wife - I can't see, I can't see. Everything is blurry, light and shadows. There isn't any bright light though. After a few minutes I am back. Heaven can wait.
Jul-26. Third week with high fever. A doctor from another department suggests a shot of Synactin, a powerful anti-inflammatory steroid. For 48 hours I am soaked in sweat and the fever goes down.
Jul-29. I am home. I don't know what I can eat. I am scared to death about the potassium. In the evening I am sure it is too high. Back to the hospital. Potassium just 5. Takes time to adjust...
All throughout July, day and night, I have a bitter taste in my mouth. I can hardly sleep.
Nobody knows why and there is nobody to ask. No Internet, no support groups.
Aug-3. Back to the hospital. Fourth surgery. Small hemotoma removed. Stomach is fixed, looks like a used one in good condition. Bad taste in mouth gone.
My weight is 73 kg, down form 85. I am skin and bones, no muscles, no flesh. I carry a pillow with me, I can't sit without it.
I move to another dialysis unit. I have dialysis three times a week, four hours each.
Sep-1984. Because I started dialysis too late, I have polyneuropathy in both feet.
I have four treatments a week, then five. No use.
Oct-1984 to Jan-1986, Dialysis.
I am adjusted. I have books with food values. I read the machine operating instructions. I know how to disconnect myself from the machine. I have a digital scale at home.
I have an Apple 2C. I keep one screen at home and another one in the unit. I write technical manuals. Sometimes I am so distracted that I fail to notice the end of dialysis...
My hemoglobin is 12 - 13. I walk about a mile a day.
Jan-1985. I cannot sleep. Later I learned that I have 'Restless legs'. Luckily, only at night. Sleeping pills all those years...
My transplant doctor says that the CMV will not prevent me from a second transplant.
I sign on with a beeper service.
Jan-1986. My phosphorus is 7. Itching all over my body. My company has a branch in Michigan.
I decide to move. I have a scheduled appointment with Dr. Novick at the Cleveland Clinic at the end of February.
My wife and I prepare passports, visas, international driver's licenses, everything.
1986, Jan-31. 11:00pm. The beeper goes off. "A kidney for you, come quick". I scream to my wife in the next room "Transplant", "Transplant".
Feb-01, 12:00 am, Another hospital, everything is different. No surgery tonight. I can't sleep.
I am fasting so no sleeping pills. Perhaps just one pill? No!
8:00am. First patient goes in. He rejects on the table. They don't tell me.
11:00am. My turn. Fifth surgery. Once more naked on the table. I close my eyes and float in a world of anesthesia.
End of time. I think therefore I am. A tube in my throat. Air is forced in and out of my lungs.
I can't move, open my eyes, or speak. I hear voices. A patient talks to the nurse that is supposed to look after me.
I become more aware. I want to breathe in my own pace. The machine is stronger.
Eternity.
I try to move my arm, my hand, a finger. Nothing. I am totally paralyzed. How can I tell them that I am alive? First thing to do when I see my wife is to arrange some way of communication.
Eternity.
I can squeeze a muscle.
The other patient tells the nurse - he is moving. - No, she says, he has cramps.
I try harder.
I can move my arm now. I hear the nurse - if he can raise his hand I'll disconnect the tube.
With all my will power I raise my hand. She takes her time. I scream, with the tube still in my throat. She uses suction to clear the saliva from my mouth. I can't breathe, I think to myself, she must know what she is doing. Hopefully. I am half-fainted. Finally the tube is out.
7:00pm. My wife enters. She wears a lab coat. All visitors wear lab coats. Same lab coats. They are recycled.
No budget for laundry. No budget for more critical items, as I learn later.
Feb-02, 7:00am. I am taken in my bed to the mapping room.
Kidney does not deliver. They decide to remove the kidney.
Feb-03, 7:00am Sixth surgery. I wake up before the end. I feel my stomach being stitched. I hear a voice: "Take him to the mapping." I still have the kidney. I am sleeping.
As I hear the story later, the kidney looked good, so they decided to give it another chance.
Feb-03 to Feb-17 Doctor orders: Stay in bed. The bed is 6' long. I am 6' 1". The mattress has a big hole in the middle. A friend buys a new mattress for me. This bed is more advanced, no cranking, just two strong nurses are required to change position.
Every morning the nurses wash me in bed. Awful.
I have a catheter in my bladder. A little urine. I had that much before.
I have a tube in my belly, connected to the kidney. There is a disposable container at the end. When the container is full, they empty it and reuse it. One day it breaks. They don't have a replacement. They send my wife to find one in another department...
The head of the department tells me, "Don't talk to anyone else. If there is a new development I'll tell you." Every morning, when he comes in, he doesn't say hello to my wife. He doesn't wear a lab coat either.
I feel pain in the new kidney. A young doctor tells me that I am infected with rare bacteria.
Another doctor tries to keep my spirits up. I ask him why transplants fail and he says that they don't know why they succeed. He was really sorry for me. Ironically, he died of cancer, long ago.
I am carried to dialysis in the bed. There is an elevator. One day the elevator is broken. I wait two hours to go down half a story.
A nurse in the night shift has a bad cold. She sneezes and coughs. I imagine the virus flying in the air, hunting for me. It got me, that was not my imagination. When I complain I get the answer: "What do you want us to do, leave the night shift without a nurse?"
No, all I wanted was to return home safely. Instead I had bronchitis for two months.
Feb-18. Kidney is removed. Seventh surgery. No more pain, I feel relieved, maybe home soon.
Feb-19, 7:00am. The bandages are open. I try to see my stomach. Something is missing.
Scary crater is located where the kidney used to be.
In addition, the main muscle of my left leg suffers the knife too. Still tender after 13 years.
My stomach is held together with a fabric belt. When the belt becomes wet they don't have another one. Tomorrow you'll get one.
I have a connection. That is, a connection between my bladder and my stomach. When I want to urinate it comes out of the open incision. I tell the doctor. He does not believe me.
They take me to a low energy X-ray, fill my bladder. Nothing shows on the screen. They don't believe me. (The connection was found a year later).
Once the kidney fails I am no longer important to them. They move me to Urology.
Feb-24. My temperature is 38.5 C (101 F). My white cell count is 30,000. My ankles and feet are swollen with 6 kg of excess fluids.
I try to walk with the help of my wife.
Feb-25. Home sweet home.
When we come back for a check up, we ask the doctor what happened. I was the only one with a rejection like that. He opens my file, flips the pages with a serious look on his face. "You had an acute rejection." Really. Thanks for telling me.
For the next three years I have a fever. 38 C (100.4 F) in the morning, 38.5 C (101.4 F) in the evening.
I leave the second transplant with a persistent bacteria. The name of the devil is Serratia Marcescens.
My dialysis doctor tries antibiotic pills. "Take with a full glass of water, 4 times a day." All my limited drinking water is allocated to the antibiotics. No results.
Another one, IV. This one is called Claforan. Every day for 2 weeks. Nothing.
Another one, IV. This one is called Amicacin (Gentamicin). Every day they check its concentration in my blood, because it is toxic.
After three weeks I am asked: "don't you hear a buzzing and ringing in your ears?" Good question. Buzzing, ringing and hissing - that's the only thing I hear, day and night.
One day, while driving, I stopped my car because I was sure I heard a noise coming from the engine.
Hearing test: my cutoff frequency is 2 kHz. (Now, in 1999 it is 4 kHz) I used to make audio recordings, now I don't hear the treble. Lucky me, I can still enjoy the bass.
I have pus in my urine (I still made about 100 cc a day).
1986, Oct-10. Bladder irrigation. Pus inside. "You have to be careful with your bladder." How?
1986, Oct-11. My wife and I analyze the situation. We agree: They don't know what to do with me. We have to get out of here. Beautiful America. In the evening I ask and receive a two hour dialysis.
We pack all the essentials. The kid is left with my sister-in-law.
I take fever pills every four hours.
We consider the possibility of taking a doctor with us. We don't.
1986, Oct-12. We are sitting in a plane, going to Michigan, USA.
Hello America.
There is a branch of my company in Michigan. The president picks us up in Detroit airport and makes arrangements for us.
The company signs for health insurance plan. There are about 50 employees. The insurer wants to grow. I get health insurance, no physical, not even a statement.
Oct-13. I take Tylenol and Bufferin. My wife gets a Buick from the company.
Oct-14. Mount Carmel hospital. Interview. Examination. Fluids in my stomach.
Oct-15. Mount Carmel. Dialysis. I am hospitalized.
Oct-15 to Nov-05. IV antibiotics. Claforan 4 time a day, $200 each. Bladder irrigation.
After three days, I sit in bed. All of a sudden a hole opens in my belly. A pint of pus comes out. Just imagine, it could have happened on the plane...
I thought I knew English. Not for the hospital. I have to learn new terms in medicine. I can't tell diarrhea from constipation.
Nov-05. The fever is down. I go home - to our rented home in West Bloomfield. The hole in my belly is still open.
All these days my wife drives in a new country, new streets with warnings not to go to an unknown place.
Nov-16. My wife goes back home to pack and bring our son.
I am alone. Watching TV. Most programs are boring. Jerry was not on the air yet.
Nov-26. My wife and son are back.
Nov-28. Back to Mount Carmel.
Eighth surgery. They patch a hole in my bladder. Incision remains half open. Fever returns.
Four doctors from different departments come to see me every day, not together. Each one tells a different story.
One day one of them says: "The good news is that we have identified your bacteria, the bad news is that no antibiotic is effective against it".
Kind of good news. I wondered when my wife should order a coffin...and what is my size in imperial units.
A nun offered to pray for us. My wife told her that we were Jewish and she said that it did not matter, which we agreed. At that moment we'd accept anyone's prayer, Jewish, Christian, or Muslim. (A Rabbi came to see me too).
Ninth surgery. Half-awake. They clean and close my stomach once more. I have a catheter in my bladder for 6 weeks.
Dec-19. I am home. My insurance doesn't cover this hospital. The company pays $70,000.
Holidays. A Happy New Year, 1987 is here.
1987, Jan-13. I change to Henry Ford dialysis unit in Troy.
End of January, the catheter is out. I try to pee - nothing.
Jan-30 ER. Catheter. Ugly urine and pus.
Feb-01 ER. Catheter. Ugly urine and pus.
Ambulance.
I am in Henry Ford Hospital in Detroit. Alone in my room.
Danger, highly infective, do not enter.
My mother-in-law comes to baby-sit the kid.
I am interviewed for an hour. I remember all dates, operations, medications, and small details.
The interviewer asks whether I have a medical background. Yes, as a patient.
Tenth surgery. Dr. Brian Miles. Head of urology. A good man and a good doctor. Excellent.
Dr. Haas. Excellent too. (My apology for those I forgot, they were all excellent).
They try to clean the pus.
The incision is wide open. An ugly big wound. The nurses that have to change the dressing are astonished. A much smaller knife stub is sure to kill. I don't feel anything in that area.
Ciprofloxacin is a new experimental medication. How do they invent such a name? I go for it.
It keeps my fever under control more or less.
I still feel the connection. When I try to pee it comes from the incision.
They repeat the low energy X-ray. Nothing is found.
Dr. Miles believes me. He puts a blue die in my bladder. After a while the blue die is found in the wound. Checking the X-ray again. The connection is found where nobody looked.
He suggested removing my both kidneys.
Mar-05. Eleventh surgery. Bi-nephrectomy. I have a shark bite on my stomach, 16" wide. 24 hours in ICU.
1987, March-13. Back home.
1987-1989. Dialysis. Fever at all times. I do bladder irrigation at home. I am an expert now.
Without my kidneys, my hemoglobin is 6. I receive blood transfusion every other week, does not help much.
I am weak without any desire. I sit in an armchair and call my wife to turn the lights on or off.
1987, September. EPO is tested in my unit. I am the first volunteer, and help to convince others.
This is a double-blind test: neither the doctor nor the patients know who gets the real stuff.
Three weeks later.
My hemoglobin is up from 6 to 7. EPO works. No transfusions anymore. No AIDS either.
I consider buying Amgen stock. I know nothing about the stock market. Never heard about the 1987 crash.
I didn't buy Amgen.
1989, March. Two mutations of my bacteria. The new ones seem to enjoy the Cipro.
1989, Mar-20. Back in the hospital.
Twelfth surgery. Dr. Peabody. Excellent. A long operation. A three year old abscess is discovered and cleaned.
Antibiotic is IV'd into my veins: Gentamicin (again), and a new one: Imipenem. This one is so strong that it burns my veins from the inside. Almost after every dose I need a new IV needle.
I have heparin lock. After the IV is done the tube is disconnected, heparin is filled in the needle to prevent clotting.
Every time I have to argue with the nurse about the procedure. At the end the needle should be rinsed with saline, then filled with heparin. They tend to do it the other way. Every time they make a mistake I need another poke with a new IV needle.
1989, Mar-31. Back home, for the last time.
I still have the heparin lock and my wife has to give me antibiotic for 2 more days at home.
This time it is called: Ceftizoxime.
They certainly invent these names to confuse the bacteria.
It works! The bacteria is dead, not me. To my disbelief, I am cured in a couple of weeks.
I continue to check my temperature for a few more months before I am convinced...
I was shown an article about a woman that had same infection for 3/4 year. Said it was the longest. I had it for 3 full years. I told my doctor that he could write a paper on my case.
Since 1991 I am on the transplant list again.
Wait for the sequel.
Tuesday, June-12-2001
My third transplant is coming soon to a hospital near me.
Read all about it.