Last updated: Apr 22, 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
In 1960 my father died of PKD (Polycyctic Kidney Disease) at the age of 48.
In 1974 I was diagnosed with PKD. It was found because of my elevated blood pressure and family history.
My creatinine was 1.8, no other symptoms or pain. Without the blood pressure warning nobody would have suspected.
For 10 years I was on a follow up, twice a year.
Ten years before anything has yet happened.
How do you live, knowing that you suffer a chronic disease, that in fact you are terminally ill?
At first you are in denial, because you don't feel anything wrong.
Then you start taking pills.
Then you realize that you'll have to take pills for the rest of your life.
All of a sudden, the rest of your life has begun.
If you have positive attitude you appreciate every day, every joy, every step forward, and every success.
You count your blessings and not your troubles.
You may think that the end of your life has already been marked in God's calendar.
Wrong! God helps those who help themselves.
It is up to you to live many more years of productive and enjoyable life.
This website is the story of my life during many years of kidney failure.
I cannot remember many details from the early days because:
I didn't feel sick so I was happy when the doctors said nothing.
The doctors never offered any explanation concerning my disease and my blood work.
My two uncles were on dialysis already, but they didn't share any information.
I take BP pills. They are diuretics. Over the years the pills become stronger. They keep my BP at about 140/90.
Once in a while I have a bad migraine that lasts for half a day. Nobody tells me that BP can be the reason.
(Now that I have low BP I don't have these migraines anymore).
My creatinine goes up slowly. I do 24-hour urine collection for creatinine clearance.
I didn't know that the creatinine in blood was inversely proportional to the kidney function.
1978. My creatinine is about 3.5. A nice female doctor checks me up. I think of taking her out for lunch.
Check up ends.
- "Can I be happy with the results?"
- "No! Your kidneys are sick!"
Forget about lunch.
I love to drink and I am being told to drink, soft drinks of course. In a meal I can easily drink a liter (quart). I usually drink from bottles, cups are too small for me. In my office I have a fridge behind me. I carry bottles in a cooler in my car. I keep a bottle near my bed.
At night I have cramps in my legs. The only solution is to get up and stand on my feet or try to stretch my toes against the cramp. When a cramp begins, before I have time to get off the bed it starts in the other leg too. I tell the docs, but they don't tell me that it could be low calcium or sodium. I learn to stretch my body from the waist up only.
They give me potassium pills. How ironic, now that potassium is my worst enemy.
Other than that I don't feel myself sick. I work 10-12 hours a day, I fly overseas many times for my work, and eat good food in good European restaurants.
1982. My creatinine is 6. My wife is expecting. Simple (but wrong) calculation: it took the creatinine 8 years to go from 2 to 6, it will take 8 more years to go to 10. Wrong. It took just 2 more years.
My wife and I decide to be vegetarians. Nobody tells me about low protein diets, but later I found it was a good decision. We eat big salads, baked potatoes, fruits, and homemade cereal with healthy bran.
A lot of phosphorus and potassium. I don't keep low sodium, I just don't add salt.
My phosphorus is high. They tell me to take phosphate binder. They have bottles of liquid aluminum hydroxide. It is called Alugel but they call it Alumag. Alumag is an antacid pill that includes magnesium, but who cares about terms.
The Alugel has the nasty sweet taste that most antacids have. I take two tablespoons with every meal.
Nobody tells me that there are pills called Alucap, without any taste. I found that out a few years later.
My potassium is on the rise. One day they call me and give me the infamous Kayexalate (Sodium Polystyrene).
This is a powder, sometimes mixed with liquid honey, but even so, it is disgusting and makes you feel like throwing up.
Nobody tells me anything about a diet, and I continue with high phosphorus and high potassium foods.
Mid 1983. My Hemoglobin is on the fall. My Urea (Bun) is on the rise. Thanks to the low protein diet my Bun is less than 35, so I don't have the bad "Dragon breath" that comes with it.
I live on the third floor and I have to stop and rest at every floor because I am short of breath.
1984, Jan-14. I have the shunt surgery. Good job, still working in Jan 2001. It is done near the wrist of my left hand (non-dominant). I have good veins, they show even on my non-dialysis arm. The shunt works immediately after surgery.
I hear the thrill at night. Sounds like huge hammers pounding incessantly.
Some patients have to exercise their hand with rubber balls or the like. Not me.
First life-style changes:
My watch moves to my right hand.
I move to the left side of the bed, to protect the shunt.
1984, may-14. My first transplant. Worked for 6 weeks. For the first two weeks I had really high Bun and learned what the "Dragon breath" was. When I exhaled I expected to see fire coming out of my mouth.
1984, Jun-29. My first dialysis.
In this unit dialysis time is 3 hours for all patients. Blood pump runs at 200 cc/min.
I start dialysis after having a working kidney, so I don't have toxins or excess fluid in my system. But I have a high-grade fever and I am very weak from 4 surgeries and losing 12 kg (26 Lbs).
I feel ok during and after treatments. They serve food after the treatment, a reminder to the early days of dialysis, when treatment time was 12 hours. For the first month I have a bitter taste in my mouth. Nobody knows the reason. I suck honey and concentrated sweetened milk. I hold my teeth tight to block the saliva, and I can hardly sleep. The bad taste is over after my 4th surgery in Aug-1984. I am told to eat more protein and we return to be carnivorous.
No bad taste but I start to puke every other day, the day after dialysis.
I decide to reduce my protein and the vomiting stops.
After a few weeks I have diarrhea. The doc gives me a prescription.
- How long should I take these pills?
- For the rest of your life!
How rude. That was just a 24-hour event.
All patients in the unit look gray. Nice new unit with big windows and freezing air-condition. I receive good treatment but there is tension in the air. Fortunately, there is another unit, closer to home. I go for it.
This unit is in the basement of a hospital. The only unit I have ever seen with above freezing temperature.
All patients run 4 hours. Never heard about URR or dry weight. The UFR goal is my weight from last treatment.
One day they pulled one kg too much, and I was dizzy for a week. Nobody could tell me why I was dizzy. In that week I had my first and only fall. I bent down in my backyard, stood up and felt dizzy. I leaned on the wall for a second and thought it was over. I left the wall and found myself on the ground and heard my wife screaming.
Luckily no head injuries.
Cobe machines. I ask for the instruction manual. Soon I know the machine and start to set it and to disconnect myself.
There was no UFR setting, just negative pressure, so I prepared a table showing how much fluid I lost relative to the negative pressure. Half an hour before the end I used to stand up and if I felt dizziness I'd reduce the UFR.
My blood pressure was excellent, 130/80 pre and 110/70 post.
During that time I collected information on food values and felt confident with my diet.
I had my treatment from 2 pm to 6 pm, and if I had work in the office I'd go back to work.
The government decided that as a dialysis patient I was too risky to the public and voided my truck's driving license.
I felt like I had one more nail in my coffin, but I had never driven a truck before, except for my driving lessons.
I still made about 200 cc urine every day. I stopped sweating completely and anything I drank stayed in. I always gained just 2 kg between treatments, but that was really hard on a person who used to drink a gallon a day.
I used to bring a small Coke (250 cc) with me. If my weight gain were less than 2 kg I'd drink the Coke before the treatment. Then I learned that I could drink it even if my gain were 2 kg. After a year on dialysis I bought a good digital scale, so watching my fluid intake became less guesswork.
Nobody ever told me anything about phosphorus in my diet. At the beginning I took 5 Alucaps with every meal (my son learned to count on them). Alucap is much more effective than any other phosphate binder. Then I was told that aluminum is dangerous to the bones and they gave me calcium carbonate pills (not Tums) to chew with food.
The pills were replaced later by powder. My phosphorus was usually ok for the first year. My Bun was about 50.
1985, January. I can't sleep. I turn from side to side and Mr. Sandman doesn't show up.
I try to exhaust myself before bed, stay late, read, nothing helps.
I lay in bed and every few seconds I feel my legs carrying a ton of load. The muscles are so tired that I have to move my legs. How can I sleep while my legs are dancing?
This is called Restless Leg Syndrome (RLS).
It takes some time before I tell the staff. I am not the only one; 30% of dialysis patients suffer from it. Some have it at daytime too. I have it at night only. Sleeping pills help.
During 1985 I can't recall any major event. Dialysis is smooth, I am back to my normal weight of 85 kg (187 Lbs).
I take vitamin B, C, and D, folic acid, my phosphate binders and sleeping pills.
My hemoglobin is 13. My kidneys still produce EPO for free. I feel good, walk a mile every day, go swimming, and do backyard and gardening work at home.
There are a few docs in the unit, but they have their rounds once a month, after the monthly blood test.
I have a friend to talk to and I bring my Apple 2C to do some work and some fun.
There are good recliners and sitting 4 hours is not a problem. They also serve sandwiches, and once in a while somebody brings a treat, like chocolate, watermelon, or other forbidden foods.
There are black and white TVs hanging from the ceiling, but most programs are for kids.
1986. January. My phosphorus is 7. I have really bad itching all over my body. I take a hot shower before bed. I take antihistamine pills and they make me drowsy all day.
1986, Feb-1. My second transplant. Kidney never worked. Removed after 18 days.
I have dialysis in the hospital's unit. Most of the time I lay in bed. I lose 6 kg, but nobody checks so I have 6 kg of excess fluid. The fluid accumulates in my ankles, which look like balloons.
After a year and a half on dialysis I didn't recognize the symptoms of excess fluid, because I had never had it before.
Back to my unit, they take care of the fluid. One more piece of knowledge for me.
I have a fever and nobody can cure it. In mid-1986 I feel so weak that I stay home.
1986, Oct-12. We move to Michigan, US.
A friend brings me to Mount Carmel Hospital. First dialysis. I don't have my medical records with me and they do a standard treatment of 3 hours. The back of the chair is broken and leans on the wall. I move and the back falls off.
Great start.
While being hospitalized I have dialysis in the inpatient unit. Same treatment but costs 3 times more.
I remember taking 1.4 cc heparin before. Now I have clots 3 times in a row. I learn that there is heparin with 1000 unit/cc and another with 5000 unit/cc. Small difference. I need 7000 units, not 1400.
Something wrong with the water. Later I was told that they had water treatment problems. Immediately after I am connected I have chills and fever. They give me oxygen. The moment I am off it is over.
I drink boiling chicken broth every treatment. It helps passing the time.
1987, Jan-13. I change dialysis units. My new one is a subsidiary of Henry Ford Hospital. 30 minutes drive from home.
My first dialysis. My tech is Donna. She is good. Still in the business. Temperature is nice, but as soon as I start I feel a blow of freezing air come from a hidden vent above my head. Same problem everywhere.
I still have a fever every day, but my blood count is ok.
They use Fresenius machine. Good machine, UFR is set by rate in g/h and the fluid removed is displayed so accurately that I can tell my weight before stepping on the scale.
1987, March. I had a bi-nephrectomy, that is, removing my two kidneys.
My blood pressure drops to 90/50. My HGB drops to 6, I receive two units of blood transfusion every other week.
1987, September. EPO is tested in my center. I am the first volunteer. It works! No more blood transfusions.
1988. I have a very good shunt. My veins are wide and hard to miss. When new techs start working I let them practice on my arm.
I hardly feel the needles, so one day I decide to stick them in myself. Piece of cake!
One new tech sees me doing this and tells me "You must be very brave!"
1989, February. Last surgery to cure my infection, No more fever.
There is a nephrodoc in the unit every day.
That is, there was. The 6 days a week soon became 4, then 2, then once in a while.
Still better than other units where a doc comes only when called.
1990. The unit moves to a new building. Same blunder. Every patient has an air-conditioning vent above his head.
The techs want to set the temperature to 70 F. After many arguments they settle for 72.
The problem is not the temperature, but the vents above our heads. Cold air at about 60 F is blown from them.
1991, Aug-27
Welcome to Disney World!
6 days of fun with our 8-year old kid.
It took 3 weeks of arrangements, getting medical referral, insurance approval, and finding dialysis center in Orlando FL.
I search for 'Dialysis' in CompuServe and Prodigy. Nothing.
My social worker gives me a list and I select one near Disney World.
It is hard to walk and we rent a motorized cart (Amigo).
We don't have to wait in line with all the others, but there are enough handicapped visitors in our line too.
It is hot, I sweat and can drink more.
Two dialysis treatments in Florida. $400. It takes my insurance 6 months to reimburse me.
I take a ride with the kid in the Space Mountain's dark indoor coaster.
He enjoys it so much that he goes for another round. Not Me. Never again. I am 50, not 8.
1991, Dec.
A friend of mine got a transplant after 10 years of waiting.
I decide to go on the transplant list again. They say that I need a perfect match this time.
Once more I take all the tests, and I am in for a long wait.
There is nothing unusual in the next few years.
I feel ok. I bring some work to the treatment or read technical magazines.
I bring tea in a thermos, because it is always cold, winter or summer.
I have 3 shirts, blue, green, and yellow. I always wear the same clothes to get an accurate weight.
I set and adjust the machine myself. It took me a few years to earn the staff's respect.
I found that changing the UFR during the treatment reduces the chance of cramping. This is called profiling. Ten years later a study (published in the year 2000) proves that profiling really reduces cramps and hypotension.
If I have to lose 3 kg in 3 hours, then instead of setting the UFR to 1000 g/h I set it to 1500, 1000, 500 g/h for the first, second and third hour, respectively.
I gain 2 - 3 kg between treatments and I drink 0.6 to 1 kg of tea.
I decide on my dry weight, based on my BP and swelling of my ankles.
I take Halcion as a sleeping pill. Over time I need more and more. From 1 pill I am up to 4.
One day a Canadian person claimed that he had killed under its influence and my doc wants me to stop it.
I go to a sleeping disorder lab. They check my eating and sleeping habits. They give me Klonopin, which is mainly used for Parkinson's. It works miraculously to stop the restless legs. I took it until 1998, when my RLS disappeared.
Now I am on Restoril, a regular sleeping pill.
My phosphate binder is calcium citrate, and later change to Phoslo (calcium acetate).
1993, November. We have a new doctor in the unit.
Dr. Mariella Goggins. She is great.
What can be great about a doctor? Of course a doctor should know his/her business but that's not enough.
Dr. Goggins listens. I can tell her anything on my mind. I can discuss my treatment and my medications with her.
She remembers to follow up on my problems, blood works, and meds.
She also takes care of my medical problems that are not related to kidney failure.
In fact, I don't see any other doc unless she tells me to.
For a chronic disease like kidney failure, the patient and the medical staff should work as a team.
It is imperative for the doctor to get feedback from the patient and to encourage the patient to be involved.
The patient is entitled to stupid questions, the doctor is not entitled to stupid answers.
Regardless of the knowledge and experience of your doctor, if s/he doesn't listen to you, doesn't share information with you, is defensive when you ask questions, and has no patience for you, find another.
Trusting and feeling confident with your doctor is part of your well being.
1996, January. My cholesterol is 236. I stop all high cholesterol foods.
No more organ meats. Chicken instead of beef. Low fat everything. Eggbeater instead of eggs.
No change. My next cholesterol is 252.
1996, March. I start Zocor, 20 mg/day. It works and my cholesterol is 180 to 190.
My Triglyceride is also high, 300 to 500. Was high long before dialysis.
1997, January. I start Lopid too, 300 mg/day, for the triglyceride.
This one works too and triglyceride is down to 150 to 170.
The pharmacist warns us that these drugs shouldn't be taken together.
He calls my doctor and she explains that this is the lesser of two evils, and their interaction is monitored by blood tests.
So far so good.
1997, July. I have a clot in the middle of my arm. First time ever.
I can still have dialysis. There is no problem with the arterial needle, but the venous needle goes into an empty vein.
I let only expert techs stick the needles. I see a vascular access doc, Dr. Schwartz, who sends me to angioplastic surgery.
1997 Jul-23. Angioplastic surgery. I am told to bring a driver or else... My wife comes with me.
A little sedation, but I am fully conscious.
The surgeon inserts a needle with a balloon through my artery and goes all the way to the shunt and back to the vein.
To see through he injects a die. I am warned that the die may make all hell break loose. Some patients even wet their pants, but I don't feel anything. I try to show the surgeon where my clot is. He doesn't listen. I see the X-ray screen and I can tell that they didn't open the clot.
Back in a room for 4 hours of rest. It is late afternoon, and we are out.
I feel much better flow in my shunt. Part of it is in the wrong direction - into the back of my hand.
I have an ultra-sound of my arm. Blood flow at the shunt is 1200 cc/min. Additional 400 cc/min flows in the wrong direction.
Near the clot there is a fork. The wrong vein is open. There is an artery close to it. If a needle goes into an artery the shunt may be disrupted. Even the whole arm. I let only experienced nurses stick the needles. I see Dr. Schwartz again and explain to him my problem.
Another angioplastic surgery is scheduled. There is a note on the order: "Listen to the patient".
1997 Aug-17. 2nd angioplastic surgery.
My BP is low. I am not given any sedation, but I don't feel any pain.
This time the surgeon talks and listens to me. He shows me the X-ray picture of my open clot.
Two hours rest in a room and back home.
Good blood flow.
I see the bill to Medicare: $25,000.
In a few months the wrong flow into my hand clots by itself. I was saved from another unknown treatment.
I have full flow of 1600 cc/min in my shunt.
Dr. Schwartz tells me that my shunt wouldn't last for more than a few months. God knows better.
1998 January. I take the flu shot every year, and it works. Not this year. After 3 weeks the flu develops into bronchitis.
My doc is on vacation. A substitute gives me antibiotics, Biaxin.
Together, the three drugs wreak havoc inside.
1998 Feb-14. Back from dialysis, I can hardly stand. I have no muscles. Pain replaces them.
1998 Feb-15. I decide to stop all drugs. Good decision. Sunday is not a good day for ER.
1998 Feb-16. ER. Early in the morning, very few people are waiting. I can hardly walk. I get in on a wheelchair.
Fortunately the doctor identifies the problem. CPK is a muscle enzyme. It should be 100-200. I have 9,000.
In two more days it is up to 36,000. I cannot stand or use any muscle in my body. I can't sit at the table. The doctor says it is reversible. Couple of weeks. What if he is wrong?
We rent a wheelchair.
I spend most of the time in my recliner.
I can barely drink 2 cans of Nepro® a day (concentrated food for dialysis patients, similar to Ensure).
I need help in the bathroom.
The dialysis staff and patients are surprised to see me like this.
After two scary weeks it is over.
For the rest of the year I don't take any drug for the lipids and they are up -
cholesterol about 210 and triglyceride up to 500.
1998, Nov. I start Lipitor. It works well on the cholesterol, but not even a hiccup on the triglyceride.
The cholesterol is 160 to 180 and the triglyceride about 450.
The commercial says that 2% of users develop muscle pain, which is a severe side effect.
I am one of the two. During 7 months of use I developed a severe muscle pain in both thighs, just above the knees.
1999, June. I stop the Lipitor.
1999, August. I see my chiropractor, which is also a holist.
He is furious because the lipid medication is bad for the liver.
He gives me Flaxseed Oil (capsules) for the cholesterol and Trichol for the triglyceride.
With these alternate meds my cholesterol is 170 to 180 and triglyceride is 250 to 350.
1999. All of a sudden, my PTH is on the rise. That is the Parathyroid hormone. Some patients have it high from the beginning. It is 200 while the limit is 68.
I receive Calcijex, which is a synthetic vitamin D. I start with 0.5, up to 2, and back to 1.
My PTH is kept at the 500 level, but my phosphorus and calcium are uncontrollable.
The calcium in my dialysate bath is reduced from 3.5 to 2, so I can take more Phoslo, but my calcium is still high.
In November my doc starts Renagel. I take both Phoslo and Renagel (403mg), about 6-8 pills per day from each.
Renagel is very expensive (60 cent a pill) and less effective than Phoslo. 2.5 pills (1000 mg) are equivalent to one Phoslo.
2000, Jan-1. A happy New Year.
I am worried whether there are going to be problems in the dialysis unit due to the Y2K bug. What bug?
2000, Jan-6. My PD adventure begins. PD catheter is inserted.
2000, Feb-3. My first PD at home.
2000, Apr-7. Back to Hemo.
2000, Apr-27. End of my PD adventure. PD catheter is removed.
While on PD, I took Rocaltrol, another form of vitamin D. My phosphorus celebrates its freedom.
In mid 2000 my doc starts Zemplar, which is yet another form of synthetic vitamin D.
Zemplar brings up a strange taste, a few seconds after it is injected. I am ready with candy before it is given to me.
I started with 4 microgram and now I am on 6. My PTH is less than 500.
At last, both calcium and phosphorus are under control. I take a mix of Phoslo and Renagel.
For a year I gave up on Coke. Now I can have some.
2000, Jul-26. In the morning I see a huge swelling in my dialysis arm, real scary.
It was near the needle from 4 days ago - very strange.
I think that the blood vessel is blocked by a clot. It looks like 2 inches (5 cm) in diameter and I am afraid it is going to explode.
I call my unit and they try to page my doc.
We call the transplant surgery, which usually handles these cases, and the answer is - no docs today, come tomorrow.
So my wife and I go to the ER. We get there by 10. I am assigned to a bed. At 1:30 pm an ER doc comes. By that time the swelling is one half of the morning's and I can feel the blood vessel inside it, so it is an internal leak from the vein. The doc agrees with me but he wants someone from transplant. At 3:30 another doc comes, and I tell him that I am almost cured.
30 minute more for paper work and I am out.
2000, Jul-27. Dialysis. My arm still swells. A few minutes after starting dialysis I notice an increase in the swelling, so I have to stop. I suggest using an area close to the shunt but the nurse refuses. She tries a small vein that has never been used and misses.
So they send me to the hospital. My wife comes with me, it takes about an hour.
The surgeon checks my arm and agrees with me about the location of the needles.
Back to the unit. The doc says no heparin, low pump flow. I mark the swelling with a pen and put a tape on it - to see if it starts growing.
Without heparin clotting is avoided by rinsing the dialyzer with saline, which I do myself every 30 minutes.
But my HGB is high (13.4) and after 1.5 hours I notice that the venous pressure starts rising, followed by a positive TMP (That is the negative pressure on the blood that sucks the fluid out).
I call the nurse in charge. It is a clear clotting. At the last minute the nurse returns the blood to me, or part of it. The total dialysis time is 2 hours instead of 3.5, so the next day I have an extra 2 hour treatment.
I already have a few purple flowers on my arm and nobody knows what is the cause of the leak.
2001. A happy New Year.
I was not sure that I'd live to see the year 2000, and here I am in 2001.
It used to be the name of a movie and now it is real.
February. My calcium is too high. I stop the Phoslo and triple the Renagel.
I take 25-30 Renagel a day, that's about $15.
The pill is more expensive than the meal.
Mar-10, Sat. We eat out. Maybe not significant but the troubles began right after that.
On our way back I feel discomfort in the back of my neck.
A bug in my stomach.
For 3 days I have pressure in my lower abdomen, then 4 good days and I am sure the bug has given up.
Now it is back with a vengeance. Pressure and pain in the upper abdomen, below the ribs.
Mar-18, Sun. I don't eat, don't take my medications. Just cups of tea and toasts.
The pain moves. Sunday it's in the middle, Monday it moves to the right.
Monday evening I am cold and have chills in my back. Fever 100.4. Tylenol.
Mar-20, Tue. First day of spring. Fever 98.8.
Dialysis. Home. I am cold with chills in my back. Fever 100.5.
Some like it hot, but I go to ER.
This ER is in a clinic in West Bloomfield. We call at 5:30pm and there are no people waiting.
6:00pm. We leave home. 6:30pm. We are there. No one is waiting. It takes 15 minutes to fill the paper work. Now we wait. Nurse. She sees me holding my jacket close with my hands and pictures me as one with heart attack.
Wrong! I am just cold. BP. 80 over something. I tell her that it's normal.
A stretcher. I put on a gown. Another nurse put IV in my elbow bent. Many test tubes. All of my EPO for the month is in the test tubes. I am after dialysis, not eating for 3 days so my labs are beautiful:
K=4, P=4.6, Ca=9.5. But my Hgb is low, 10.3 after 11.3 a couple of weeks ago.
The bug likes red blood cells. My white blood cells count is normal, i.e., no infection.
The doctor comes. He touches my belly here and there. Mild pain. Gall bladder.
I have dry mouth. Can I get some water? No. After the X-ray.
7:30pm. X-ray. Chest and abdomen.
Can I get some water? No. After the ultra sound.
8:00pm Ultra sound of the gall bladder. No stones are detected.
Can I get some water? No. After the doctor sees you.
9:00pm. The doc comes again. You have many cysts in your liver. I knew that. I have them for 20 years. No stones in the gall bladder, but something is suspicious. Dilated bile duct. This is the first time I hear this term. The doc doesn't supply any more info.
You have to go to the ER at the hospital, in Detroit. No, your wife cannot drive you, ambulance will take you there.
The surgeon will check you, you stay the night, and in the morning you'll have CT. Wow!
10:00pm. We are still waiting. I tell the doc, wouldn't it be better if I go home now and go to ER tomorrow?
No, tomorrow you'll have to wait. If you go from here the surgeon will see you immediately.
I ask the nurse again about water. If I give you water I lose my job! Says she.
Are they planning a surgery for me tonight?
10:30pm. Ambulance. They're coming to take me away... At the last moment I put on my pants. Good decision.
I am strapped on the stretcher. Surprisingly comfortable. 30 minutes drive to the hospital.
No blinking lights or siren. While on the stretcher, the potholes in the road seem worse than when you drive.
My wife drives behind, but loses us when the driver pushes the pedal to the metal.
11:00pm I am in. My X-ray and other info are in a big envelope.
I am moved to another stretcher. No blanket, no pillow.
My wife goes to the reception. They don't have my name.
12:00am. It's Wednesday already. Nothing happens. Sick and intoxicated people are arriving all the time. Disgusting.
I ask somebody if they know that I am there.
1:00am. I am still at the same place. They mixed up my paper work. At last they find it.
They call my wife and she comes in. Together we are both better.
They move me to another place.
The doctor will come, but it will take a while.
I am cold and have backache from the stretcher. My wife asks for a blanket. They are not sure if they have any.
They find one. But they don't have pillows.
2:00am. The doc does come at last. Young female doctor Gelman. She is sure something is wrong with my gall bladder. She explains to us what a dilated bile duct is. She doesn't want to remove my gall bladder just like that. To be sure she mentions the CT, but there is a better way, inserting a camera through my mouth down to the intestine.
Kind of fun that we all look forward to...
3:00am. More blood tests.
As the time passes by I develop hatred toward this place.
We decide that I don't go for a surgery without getting a second opinion, no matter what.
All I want now is to be out of here. Every moment may bring a bad surprise.
4:00am. A senior doc comes. Doctor Paton. He gets all the info. He doesn't think it is serious. At my age, PKD, and dialysis, the gall bladder looks normal to him. I tell him that I love him.
I can go home. Not even CT.
5:00am. One more hour until they remove the IV and done with the paper work.
We are out. We drink coffee from the vending machine. Cheap. Taste like they are saving on coffee and sugar.
We throw them and get into our car.
5:30am. Home sweet home. My temp is 99.4. We hit the bed.
End of ER but not end of story.
Mar-22, Thu. Dialysis. My doc arranges CT for me.
After dialysis I see my alternative doc. He doesn't feel anything wrong with either my gall bladder or pancreas.
He thinks it is either food poisoning or a virus. He gives me pills for both.
Mar-23, Fri. 1:00pm. CT.
I drink the nasty stuff with orange taste. It is much easier with a straw.
Then comes the lemon stuff.
I lie on the CT table. IV. Don't breathe. Breathe. Five minutes and it is done.
My fever is less than 99 for the whole day.
Mar-24, Sat. Dialysis. My neph orders blood culture.
That means nobody is still thinking about the gall bladder or the pancreas.
No more fever, but still a little discomfort in my stomach. I gradually return to eating. In a week I lost about 4 Lbs.
Mar-25, Sun.
I am almost back to normal. Gradually eating more and more. Discomfort in stomach gone.
Mar-27, Tue.
The CT did show dilated bile duct, but I have no pain and I am not going to do anything about it, until there will be no other choice. Right now the treatment by my alternative doc works well for me.
Mar-29, Thu.
Dialysis. My doc makes an appointment for me with a GI for Monday Apr-02.
Apr-01, Sun.
Fever. 101
Apr-02, Mon. Morning, fever is 102.
Early in the morning I see my alternative doc, but he doesn't think I have anything serious except stomach flu.
Before we leave for the appointment in the hospital it is 103. Two Tylenol sends it down to 101.
Of course I don't eat anything except tea and Coke. The Coke is an eye opener.
I see Dr Wang (GI). He is in the business for 25 years. He explains in great details what I have and what treatment is suggested. He thinks that I have problems with both the gall bladder and the pancreas, and he doesn't think that the fever has anything to do with that. Indeed the CT showed inflammation of the pancreas.
The treatment that Dr. Wang suggests is to insert a camera through my throat to the gall bladder and clean the bile duct.
I don't have stones but there is calcium. The camera has all the equipment for the treatment, w/o a surgery, but there is a risk of bleeding or infection. I tell him that I want to re-consider.
I had a problem with my pancreas in 1995 with similar stomachache and the camera was mentioned back then.
My wife then grabbed me and took me to her alternative doc, he identified the pancreas (that I knew from CT), gave me pills made out of beet root, and after 6 months of daily stomachache I was cured completely in a couple of months.
They take blood tests and my wbc is 12000, which doesn't fit a fever of 103.
They also take culture, but this may take a few days.
Apr-03, Tue
Dialysis. They take liver enzymes. I have another appointment with the doc next week.
The fever continues for the rest of the week.
The trouble is that after my fever is down by pills it rises again and I have real bad chills that make me shake.
The solution is to go to bed and warm my chest with an electric heater, but then the fever is up again...
On Thursday it is down to 100.5 and on Friday it is 99.5.
For the second week of April I get up with normal temp in the morning and it is up to 99.3 in the evening.
For the last week it is not higher than 99.
Apr-06, Fri.
I get a call from dialysis that one culture came positive and I should come and get Vancomycin IV.
I decline, based on the fact that 3 cultures were taken and only was positive and my fever was no more serious.
The next day they take 4 bottles of culture and they all are negative.
Apr-11, Wed.
Another visit with the GI. He is satisfied with my liver enzyme tests.
Right now he is not going to do the camera thing and I'll see him again in 3 months.
Apr-16, Mon.
This week the fever is never above 99. I don't take any pill for the fever.
It looks like it is over.
May, June, July.
In one month I lost 13 lbs. (6 kg). From 86 I am down to 80 kg.
My HGB is down from 11.5 to 9.4, and that is a big difference. I feel tired and weak.
My Epo is increased to 8000 unit 3 times a week. It takes 3 months to get my Hgb back to 11.5.
I gain 3 lbs and stay 81.5 kg. My appetite is less than it used to be, but I have no pain.
The appointment with Dr. Wang in July is short. Everything is OK.
Aug-31, 2001, Thursday.
I have got The Call.
My Third Transplant adventure begins...