Last updated: Jun-05-2006
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
After my second transplant failed in 1986 my PRA (Panel Reactive Antibody) was about 60% and stayed there for many years. In 1991 I got on the transplant list. Because of two rejections and high PRA they told me that I needed a match of 4 out of the 6 antigens.
For 10 years nobody was ahead of me on the list for that kind of antigen match, but there was no kidney either.
Over the years the PRA diminished slowly. For the last year I have seen a single digit.
In Nov-2000 it was 2% and I was sure it was an error.
Jun-2001: My PRA is 7%.
Tuesday, Jun-12-2001, I talk to Dr. Goggins, my nephrologist, about my lower PRA. She calls the transplant coordinator and the nephrologist in charge and in five minutes comes back to me - no more restrictions.
So after 10 years of waiting I may be at the top of the list! All of a sudden it is real.
I may be called for a transplant tonight! Or tomorrow! Or next year... Dr. Goggins thinks it may be this summer.
The memories from my two failed transplants are still vivid in my mind.
Terrified and delighted, that's how we feel (thanks Martha for the phrase).
We leave a cell phone on 24 hours, we jump with every phone ring and never leave home without our cells.
We checked with the transplant coordinator and of course - they had the wrong phone numbers. I explained to her that I am not desperate, I have been waiting for 10 years so I can wait one more year and not jump on the first available kidney.
She wrote down notes about my requirements - 2 antigen match of B and DR (my neph's advice), kidney less than 18 hours in the cooler, and young donor, at least not older than me.
I think that I have a very good transplant team and I rely on their decision.
Anyway, after 10 years it seems just unreal that the phone is going to ring and a voice on the other end of the line announces, 'We have a kidney for you'.
Will this one work? And for how long? 10 years? 5 years? I'll take it! Thank you!
1 year? Disappointing but better than nothing.
I make plans with my wife about what I am going to do after a successful transplant:
I'll buy a quart-size cup.
I'll drink Coke from a family size bottle.
I'll eat every food with high potassium and phosphorus. Say Cheeese...
I'll eat vegetables and fruits every day.
I'll drink milk and fruit juices.
I'll leave the toilet sit UP at all times.
I'll buy a Harley.
I'll try to thank the donor family, if they wish to make contact.
I'll certainly get more ideas when the time comes.
Still, there are too many unknowns, my body is one, the kidney is another, and the transplant team is another.
And the immunosuppression drugs --- a complete mystery, are they going to work for me this time?
They are going to give me Prednisone, Cellcept, Prograf, and OKT3, but no Cyclosporin (Neoral). OKT3 is anti-rejection and I'll receive it from the beginning, just in case.
I schedule an appointment with the transplant nephrologist on Friday Jun-29. I have a lot of questions to ask.
This list will be updated until I see him:
Where am I really on the list? When can I expect my transplant?
What is the best kidney for me?
Who is the transplant surgeon?
What medications am I going to take?
Do I need OKT3 and what doses? This med has a lot of serious side effects.
Will I ever be prednisone free?
Will I take antibiotics and which one?
What diet restriction can I expect?
Will I receive blood? I need double washed cells or my temperature will be sky-high.
Will I be in a private room? If not, will the other one be a transplant patient?
How long will I stay in the hospitals if there are no complications?
Can my CMV produce any trouble?
Jun-29-2001
Today is my 17th dialysis anniversary.
I see Dr. Venkat. He checks me up and reads all the information about me on the computer.
Here is what he says:
What to ask about the kidney:
Cause of death - trauma (head injury), donor should not be older than 55, kidney in the cooler less than 24 hours, no Pressor (med to raise donor blood pressure). Good kidney function before.
I'll receive Rapamune too (or maybe Rapamycin?).
Prednisone will start at 30 mg and will go down. Prednisone free is unlikely.
Antibiotics: Cytovene for 3 months (for the CMV) and Bactrim (for urinary tract infection and pneumonia) for a year.
I'll stay in the hospital for 10-14 days without complications. Most patients stay for 5 days, but I am a high risk.
2 days in ICU at P4 and the rest at H4. (These are the unit names and I'll be in a private room).
No diet restrictions after transplant except for sodium if my BP will be high (unlikely).
It is not likely that I'll get a blood transfusion but he made a note about the double washed cells.
I read the description of all the drugs I am going to receive.
They all have serious side effects. They are all toxins and the doctor has to consider the risk vs. the benefit.
More terrified and less delighted...
Aug-14-2001.
My friend Cathy from Alberta Canada, receives a kidney from her husband Leo.
They call the kidney Cleo.
Live donor transplant is supposed to start working soon after surgery. Not this time. It took Cleo 5 days to kick in.
As soon as her kidney starts making urine, Cathy goes through another surgery to fix a leak in her ureter.
Aug-28-2001.
Cathy calls. The kidney works. Leo is doing ok.
Her creatinine is 1 (88 Canadian), but she still suffers from fluid retention.
The docs are trying various anti rejection and other drugs on her.
They are in their trailer and go to the hospital every morning for blood work.
Aug-30-2001, Thursday, 9:00am, Dialysis.
While I am dialyzed, my wife drives our son to college. He attends the University of Michigan.
I just remember that he was an 18-month baby when I started.
Michelle, my transplant coordinator, is in the center.
"When are you going to call me?"
Aug-30-2001, Thursday, 7:00pm.
Phone rings. It is Michelle...........................................
For the third time in my life I hear "We have a kidney for you".
I ask her all the pre-prepared questions.
One DR match. Donor is 27 years old. Car accident. Poor guy.
We know that another family is grieving right now, so we are not happy, we are thankful.
They haven't removed his kidneys yet.
I am on standby. She is going to call somewhere before midnight.
"You can have dinner". Eating is the last thing on my mind.
Now it's my turn to call my friend Cathy with the good news.
We make last minute arrangements and watch TV. We are not too excited.
Aug-30-2001. Midnight. Michelle calls again. "1 am, be there!"
30 minutes drive to Henry Ford Hospital. My wife is driving. Main entrance. It is closed. Parking lots are closed too.
Where do we go? ER parking is open. We are in unit H4. Bed, gown, paper work, IV in the back of my right hand.
Surgery at 7:30 am. It is 3 am and my wife stays with me. We cannot sleep.
The following may be boring and overly detailed to anyone not involved in kidney transplant.
Aug-31-2001, Friday, 6:30am.
They come and take me. A team works efficiently around me.
The IV in my hand is useless. They insert a center line under my neck. Someone tries unsuccessfully to insert an arterial needle in my right wrist. After 6 failures he gives up and does it later when I am already sedated.
I talk to someone from the surgery team. I can't recall talking to the surgeon himself. His name is Dr. Dagher.
The head of the transplant unit is Dr. Abouljoud. They all did an excellent job.
7:30 am. I am in the OR. Third transplant, fifteenth surgery.
This will be the last one, for better or for worse.
Here is what my wife told me later.
About 2pm the surgeon approached her. Initially the kidney didn't fill with blood. After a while there was a slight change in the kidney color to pink. 2 more hours.
When I hear the story, first thought comes to mind: Déjà vu.
4:00pm. I am in my ICU room. I open one eye and close it, then once more, and more. It takes about two hours to become fully aware of myself. Oxygen tube in my throat. Painful. They won't remove it until 3am and then put an oxygen mask on my face.
They do Plasmapheresis with a noisy machine.
This is a treatment similar to hemodialysis in that it involves circulating part of the patient's blood through a machine.
The blood is separated into its solids (blood cells) and fluid (plasma).
The plasma (with the antibodies) is then discarded, and replaced with fresh frozen plasma.
The blood cells are then resuspended in the new fluid and returned to the patient.
For more info see:http://www.umm.edu/transplant/kidney/highpra.html
I try to point at my throat but my hands are tied. They think that I have pain in the surgery and give me more painkillers. My BP falls and they fill me with 6 kg of fluid.
A tube in my nose.
A huge Foley catheter, you know where.
A drainage bottle comes off my belly.
It was hard to find a place to connect the new ureter. It is now connected with a stent to an old ureter.
The ureter is the connecting tube, which leads from the kidney to the bladder. This 1/8" (3 mm) tube constantly deliver urine to the bladder.
A stent (or stint) is a small plastic tube enforcing the plumbing, and should be removed after a few weeks.
The oxygen is off. I have to take pills. The nurse wants to give me the pills through the nose tube. I assure her that I can swallow and get rid of the tube.
Somehow the needle in my neck becomes loose. Another one is inserted in my left side. X-ray in my bed shows that it is inserted correctly.
My son comes to a short visit.
I have dialysis in my room followed by plasma treatment.
Painful and frequent spasms in my bladder.
The surgeon says 50-50 chance.
Sep-2-2001, Sunday.
They take me to ultra sound and it shows good blood flow in the kidney, so they are not going to remove it and I can eat a liquid-only meal.
My blood pressure is monitored constantly. Every doctor and nurse listens to my lungs.
11:00pm. I am moved from the ICU to my room in unit H4.
Sep-3-2001 Monday.
In the morning I find out that I share the bathroom with the adjacent room...
A doctor comes to see me. There is a transplanted woman in the adjacent room. I hear him telling the nurse that it is horrible. They move me to a real private room.
Every room has a heat exchanger. Cold air flows night and day.
All heat exchangers in all rooms are covered with blankets and pillows...
Dialysis at 1:00pm. My weight is 89kg. Used to be 81.5 a week ago. I go down to 87.
It is freezing. 3 hours, they remove the needles and I am back at my room.
An hour later the plasma treatment tech comes. Needles again! What a coordination!
Sep-4-2001, Tuesday.
Nothing special. I receive 2 IV's, one is Thymoglobulin, which is a strong anti-rejection med (OKT3). This med is given over a period of 4 hours because its severe side effects like high fever and chills. Doctors administer the first few times and since I have no side effects they give it to me in 2 hours. The other one is Ganciclovir, which is against CMV and given in an hour.
I get off bed and sit in a recliner for a while. My appetite is nil and the food doesn't make it any better. They give me regular diet - potatoes 3 times a day, which of course I only scratch.
I am in the dark concerning food. For 17 years on dialysis I knew exactly what and how much to eat, now I don't.
My experience is worthless for this post transplant period.
Meals are served at odd hours: breakfast at 9am, lunch at 2pm and dinner between 7 and 9 pm. I hardly eat a quarter of the food.
The antibiotics cause yeast infection and after every meal I suck Mycelex lozenges
My wife brings some home made food and a thermos of tea. She comes every day in the morning and stays after lunch, then goes home and returns for dinner. When I am in bed she feeds me.
Twice a day I receive heparin shots in my belly. I feel no pain but have many blue dots.
I also have a bruise under my left eye.
Sep-5-2001, Wednesday.
A nurse wakes me up at 3am to take my weight.
What do they think, that my weight is going to change between 3am and 6am? I tell her that next time I won't get up.
Next time they come between 5am and 6am.
Plasma treatment in the morning followed by dialysis. This time the needles are left in my arm so they didn't stick me twice.
I receive 2 pints of blood transfusion.
I receive my first IV at 5pm, but not the second one. We call the night nurse. After an hour of checking and re-checking I receive the second one.
Sep-6-2001, Thursday.
I lost my voice because of the respirator tube and the cold air.
I try to cough and start leaking at one point amidst the staples. I stand in the middle of a small puddle. They check and it is not urine, it is lymphocele.
At 1pm they take me to have a renogram. This is done by injecting radioactive substance into the vein and taking progressive pictures that show how the blood flows thru the kidney and how the urine flows out of the kidney and into the bladder. It also shows any urine leak, but there isn't any.
Over there it is freezing. All staff wears jackets while I am in my hospital gown.
This is because of the computers, they tell me. Nonsense!
At night I have the one and only horrible stomachache that radiates into my back. They give me Mylanta, Zantac, and at last Darvon (a painkiller). By the morning it is gone.
Sep-7-2001, Friday.
Last plasma treatment in the morning. No dialysis today.
They give me lasix through the center-line. This IV saves me a lot of poking every day.
A week has passed.
A few cc of urine. Nothing to write home about.
I know that my friend Cathy waited 5 days for her new kidney to start. Maybe there is still hope?
Or maybe this kidney will never start?
Then I am receiving all these anti rejection drugs in vain?
And exposing myself to any known disease?
Maybe I'll tell them to remove the kidney and let me go home?
Sep-8-2001, Sat.
They say I need dialysis before the weekend. The nurse and the dialysis staff don't know about that. At last they take me at 3:30pm. I am the only one in there and as usual it is cold.
All day I have drainage from the incision.
I watch TV till midnight.
Sep-9-2001 Sun.
One more time one of my IV's is missing and then found.
The doc says that I may go home tomorrow. He tells me - we did everything in the book, now we have to wait.
It may take up to 3 months for the kidney to wake up. Later I heard that from a friend that did wait 3 months.
Sep-10-2001 Mon.
I stay.
Renogram twice. They want to be sure that there is no urine leak inside, and there isn't.
I make about 240 cc. A cup a day. 10 cc an hour.
I know that I should make 100 cc an hour. It may take forever to get there.
They tell me again that it may take up to 3 months. These are going to be the longest three months of my life.
Sep-11-2001 Tue
Dialysis in the morning.
I hear talks about bombing. Only at noon I hear the horrible story.
Back to my room, watching the unfolding events on TV all day and night.
After dialysis the urine output declines. Just 125 cc today.
Sep-12-2001 Wed.
A doc enforces the stitches to stop the leak.
Now it accumulates inside and soon I have a cone-head growing on my belly.
Kidney biopsy in the morning. It is performed in my room with the aid of a small portable ultra sound device.
It looks ok. Later they tell me that no rejection was identified. Good news!
Foley catheter is out. What a relief! I start walking in the halls. I am weak. My HGB is less than 8.
Sep-13-2001, Thu.
Dialysis in the morning.
The pee game
Today I have made about 370 cc of urine. This is the highest ever. Encouraging.
For the first few days there was nothing coming out. Then a few cc's of real urine, then more. (cc stands for cubic centimeter, which is the same as milliliter).
We look at the tube and are glad to see it fills. We look at the bag to see how much urine is there.
When there is more flow the tube fills frequently, then nothing for a few hours, especially after dialysis.
Our mood swings up and down as we watch the amount of urine output.
No more IV's.
The pharmacist comes to discuss my medications and gives me a 5-day supply. The Medicare covered meds are sent by mail and nobody knows when overnight shipments will be resumed.
7:00pm, we leave the hospital.
Now is the time to say that everyone that treated me was excellent. The docs came to see me at least once a day, sometimes more. The nurses were wonderful and I appreciate their effort very much.
Here are some of the instructions they gave me:
Avoid close contact with young children who received LIVE virus immunization or anyone with respiratory infection or flu.
Stay away from people who are obviously sick.
Get into the habit of washing your hand frequently.
Try to avoid crowded areas, such as theaters, airports, and public transportation - at least for a few months.
Do not, under any circumstances, change kitty litter boxes or bird cages; they can be major sources of infection.
Do not garden, dig in dirt, or mow the lawn until you have permission from the Transplant Team.
Avoid wood-work.
Prednisone and other medications can make your skin more sensitive to sunlight - so avoid extended exposure to the sun and wear a sunscreen with high sun protection factor ( at least SPF 15) when you are outside.
Avoid lifting heave objects and performing heavy physical labor until you have the Transplant Team's permission (at least 6 to 10 weeks after your discharge).
Don't do push-ups or sit-ups, and avoid contact sports or other activities that may put pressure on your incision.
Don't eat grapefruits.
Don't take herbal supplements, especially St. John's wort.
Before taking any supplement, it is important to ask your doctor or dietician.
Trouble is, if they have never heard about the herb you ask they would certainly say DON'T.
I am back home.
I have a long list of meds to take, this is a partial list:
Cellcept 1000 mg
Prograf 3 mg
Cytovene 1000 mg
Medrol (Prednisone) 30 mg
Bactrim
How not to forget your meds.
All of my meds are in a round cookie box. Those that are taken twice daily are marked with asterisks.
In the morning I collect the pills from all containers and put them on a plate. I take the containers out of the box until all of them are taken, then return them back into the box.
Sep-14-2001 Fri.
Urine output declines to 250 cc a day. My ankles and feet look like balloons.
It is difficult to sit in front of the computer. I have no appetite.
A lot of meds to take. We have a list and we double-check every item.
My son comes home for the weekend, after waiting 3 hours in a line to donate blood.
Sep-15-2001, Sat.
Dialysis in my regular unit. They are very supportive. I have to argue about my fluid removal but the doc approves going to 84 kg. Even after losing 3 kg my feet are still looking awfully swollen.
Urine output is down to 200 cc.
Sep-16-2001, Sun.
I manage not to gain any weight. I am in the dark. My knowledge about dialysis doesn't help me now.
Do I need to drink more despite my swollen feet?
Hardly any urine output.
Appetite is back and I am hungry.
I have a small accumulation of fluid in my belly near the surgery.
I have fever in the morning 38C (100.4F) and we call the resident nephrodoc. He suggests coming if it is 38.5C (101.3F). One Advil and the fever is gone.
Tomorrow morning we are back at the hospital for blood work. Hopefully I'll survive till then.
Sep-17-2001, Mon.
7:30am first visit to the clinic. Blood test. A thorough examination by Dr. Venkat.
The nurse Marilyn sits with us and explains the procedures. She is nice and answers patiently all of our questions.
My creatinine is 7.1, two days after dialysis. Used to be 11-12.
There is more urine today. Strong odor but smells like roses to me.
My Prograf was increased from 3 to 5 a day.
I shouldn't use Advil, just Tylenol.
He also prescribed Lasix pills (diuretics).
He recommends removing fluid in dialysis as much as I can stand.
He says that it may take up to 3 months for full recovery of the kidney. Next time I'll have another renogram to ensure that blood is still moving through the kidney.
Sep-18-2001, Tue.
160 cc urine in the morning! Highest ever! After 15 years of no urine!
Dialysis at 9am. Have a private room and put on my mask whenever someone enters.
My feet are swollen and I plan to remove 4 kg. After discussing it with my neph I do one hour of UF only and remove 2 kg. Then 3 hours of regular dialysis and more 2.3 kg are gone. I check my BP every 30 minutes to keep it above 100. At the end it is 120/60. My weight is 81.7 kg.
It takes my system the whole day and night to absorb most of the fluid from my feet.
I still have at least 3 kg extra, luckily, none of it is in my lungs.
Sep-19-2001, Wed
Fever in the morning. Sounds like a name of a song, but we are worried 37.8C (100F). 2 Tylenol and the fever stays 37.4 for the rest of the day. I take my temp every hour. I hate to have problems at night when the only resort is ER.
In the evening the fever is gone.
For the last couple of days I make about 120 cc every 8 hours. It has started like this today, but after my 2pm visit I had another one at 8pm, then midnight, then 4am and 8am. All together 600 cc!!!
I know that after dialysis it usually goes down.
Sep-20-2001, Thu.
Dialysis. I remove 3.5 kg and I am down to 79kg. My feet look much better.
Back home, I drink a little orange juice and eat a little mashed potato.
Grapefruits are not allowed because they absorb the Prograf.
Sep-21-2001, Fri.
Three weeks from transplant.
Fever 38C. 2 Tylenol set it back to 37.2.
My feet are almost back to normal and I can put on my shoes.
Follow up in the transplant clinic. Urine culture.
Renogram. Surprise, it is not freezing anymore. Someone complained and they fixed the thermostat.
Creatinine=5.0, K=4.0, Cal=9.3, bun=45.
My doc explains that dry weight shouldn't be used and I should remove about 2 kg every treatment.
Dialysis time will be 3 hours, using bath of 3k, 2Cal.
Sep-22-2001, Sat.
Dialysis. Low grade fever all day - 37.4C
After dialysis the kidney delivers a little less so I drink a little more.
Having an accurate digital scale at home makes it easier to decide how much to drink.
For the last few days I make 600-700 cc per day. Potassium is the easiest to remove so I let myself enjoy more of it.
I don't know what's my phosphorus level and I still take phoslo.
I left the hospital with my lowest albumin ever - 2.2.
I take the morning pills with oatmeal and add one scoop of whey protein (17.5 g protein). I eat chicken/meat for lunch and then shake with 1.5 scoop protein in the evening. That's about 65 g protein a day.
My BP is in the 100 to 120 range (systolic) and numbness in my fingers at night disappeared.
I don't experience any change in my appearance due to the medications. No mood swings either.
Sep-23-2001, Sun.
Fever in the morning. 37.9. I don't feel sick and my strength is gradually back to normal.
A record-breaking day: 900 cc. It wakes me up every 4 hours or less.
In fact I don't gain fluid weight anymore.
Sep-24-2001, Mon.
I saw my doc and --- creatinine=4.7. Potassium=3.8, which means no more restrictions on potassium.
Hello potatoes, oranges and avocados (I don't like bananas).
My prograf was increased again from 5 to 7 mg a day. They check its concentration in the blood and fine-tune the dose.
However, I have a bladder infection and have to take Cipro. That's the reason for my fever.
Same Cipro that saved my life 15 years ago. Still expensive - $4 a pill.
The surgeon removes some of my stitches but not all.
I have an open drain in my belly where I cannot see it and have to re-dress it twice a day.
Tomorrow a short dialysis, 2.5 hours.
This has been another record breaking day, 1100 cc.
Sep-25-2001, Tue.
Dialysis. I decide that 2 hours will do because I can't hold my pee longer than that.
Blood work before dialysis. If it comes ok that may be my last dialysis, after more than 17 years on the machine.
My labs from Thursday show P=4. I decide to stop taking my phosphate binders. In my first transplant I noticed that phosphorus follows kidney function better than creatinine.
My HGB is still low- 8 and my iron is low too.
The production today is 1050 cc.
Sep-26-2001, Wed.
No fever. Could 2 Cipro work so fast?
I am waiting for a call from the transplant clinic.
The call has just come in.
No dialysis tomorrow, a visit to the clinic instead.
Creatinine 4.8. Phosphorus 2.8.
I knew it! After 17 years of restricted potassium and phosphorus I must be eating too little of them now.
Hello milk and cheese, Coke and pizza, here I come!
Production declines a little, 970 cc, and we are worried...
Sep-27-2001, Thu.
Clinic visit. Creatinine 4.3.
After 17 years and 3 months *** No More Dialysis ***
I have a prescription for iron and I'll receive epo in the clinic if needed.
Another record today: 1200 cc.
Sep-28-2001, Fri.
Clinic visit, blood test and 10,000 epo.
Despite the increase in urine my creatinine is 4.7. Every small change is scary.
Visit with my urologist, Dr. Peabody. I have a date for a one-day hospital overnight stay, Oct-16.
My ankles and feet are still swollen. In the morning they look better, but once I lower my feet they fill up again
I estimate 3 kg excess fluid in them but I am afraid to dehydrate myself so I reduce my weight gradually, about 200-400 gram a day. During the day I drink equal amount to what I pee and at night I pee w/o drinking.
Time for fruit juices and some Coke.
Production today: 1400 cc.
Sep-29-2001 Sat.
My weight is 81 kg. No fever.
Potatoes with lamb for lunch, pizza for dinner.
Production today: 1.7 liter. No need to use cc anymore.
Sep-30-2001, Sun.
Weight: 80.6 kg.
Production today 2.1 liter
Oct-1-2001 Mon.
One month anniversary.
Weight is 79.8 kg.
Clinic. Creatinine 3.8, potassium 4.2.
Prograf was increased to 9 mg a day.
Cellcept was increased to 1500 mg a day.
Stitches are removed at last. At home I cough hard and same old leak returns. Luckily I am in the bathroom and immediately enter the shower. I estimate that 2 cups leaked. Who needs this fluid anyway...
We still have a lot of dressing and tape at home, so there is an immediate remedy.
After 2 hours the dressing is soaked. Another one.
We receive our rejection drug from Chronimed, which is a mail order service. When the neph changes my dose (common with the immunosuppression drugs) they want the doc to call them. I was short on prograf and they didn't send it, so my wife had to buy a one-day supply in the hospital's pharmacy. What a hassle!
Oct-2-2001, Tue.
Weight is 79.5 kg.
The dressing is just a little wet. Maybe there is no more oozing inside.
In the evening the dressing is dry. Another nuisance is over.
Production today is 2.4 liter.
Oct-3-2001, Wed.
Weight is 78.8 kg. I still have about 1-2 kg excess fluid in my feet but they look much better.
Prograf was sent priority overnight and arrives at 9am.
I want to take a shower in the morning. I remove the dressing--- dry but the cone-head is back. Still oozing inside. Now I am afraid to leave home (the only place I go is the clinic).
Tomorrow is a clinic day. What if it starts leaking in the car? Or in the clinic, wetting my pants and shoes?
Oct-4-2001, Thu.
Morning, dressing is dry.
My weight is 78.1 kg
Clinic. Creatinine 2.9
My doc wants to look at the incision. I open the edge of the dressing and...... a jet of fluid is ejected.
My doc arranges an urgent appointment with transplant surgery. I see Dr. Forman. It takes a while to find a treatment room. He opens the dressing, which is already soaked, and about 2 cups of fluid emerge. He takes a sample to see if it is urine and we go to the cafeteria. It is noon. He is back at 2:30pm. It isn't urine, just lymphocele. He widens the opening, inserts some gauze in it then calls Dr. Dagher, the surgeon. Dr Dagher is in the OR. He comes at 4:30pm and sends us home with a stock of dressing and tape.
We left home at 7am and we are back at 5:30pm.
The dressing is already soaked. We change the dressing and again at 9pm.
Oct-5-2001, Fri.
Weight: 77.2 kg.
In the morning the dressing is all wet but no overflow. Maybe the internal leak is diminishing?
Oct-6-2001, Sat.
Weight: 76.7 kg.
The dressing overflows every few hours. We use a huge amount of dressing and tape. The tape leaves blue and red marks on my skin.
It seems that it is not going to stop soon.
I stopped the lasix and the kidney delivers about 50 cc an hour on its own.
Oct-7-2001, Sun.
Weight: 76.5 kg.
It is the last day for Cipro. Maybe my appetite will improve after that. I drink 2 high protein Boosts a day.
I drink more milk. My taste has changed and I am not so fond of Coke anymore. In general I need less sugar than before.
I drink by the scale to balance my fluid so I don't go too much over or under my weight.
Still no side effects from the meds and no moon face. I have some trembling in my hands.
The biggest nuisance now is the leak from the incision. We change the dressing 4 times a day and it looks like I lose 1 kg a day from that alone.
Oct-8-2001, Mon.
Weight: 76.1 kg.
Blood-work in the clinic. There is a problem in the lab so I don't know the results.
We go to see Dr. Dagher. We don't want to wait with the leak until it may be too late, but he thinks that the amount of drainage is not unusual.
Oct-9-2001, Tue.
Weight: 75.3 kg.
The leak from the incision decreases. Instead of 5-6 changes of dressing it is down to 3.
As a result I lose less weight.
I tried carbonated water and I just don't like it, so it is not the Coke, maybe the bubbles?
Hopefully my taste will change back to normal over time.
I have some stomach upset, probably because of the meds. A cup of milk gives an immediate relief.
Oct-10-2001, Wed.
Weight: 75.3 kg.
The leak increases.
Renogram in the afternoon. One more time they want to be sure that there is no urine leak inside.
Oct-11-2001, Thu.
Weight: 74.5 kg.
Clinic. Creatinine 2. Yippee!
Bun 38, coming down. HGB 9.2, going up. K 5.9, strange. The neph tells me to watch my potassium, avoid bananas and orange juice. Trouble is, I hardly eat neither, nor potatoes or anything. They give me Kayexalate.
I have to go to the clinic once a week. Aren't they worried about the potassium? Kayexalate is a quick fix, not a solution.
My epo is down to 10,000 unit a week. My Prograf is up from 9 to 10 mg a day. Flu-shot.
My Medrol (Prednisone) will be reduced by 2 mg every week.
My neph says that the increased Cellcept may cause diarrhea and if it happens they'll reduce it back to 500 mg.
Renogram shows for the first time a small urine leak. Another plumbing surgery is required. Dr. Dagher is going to call me.
Oct-12-2001, Fri.
Weight: 74.3 kg. I think that I am dehydrated and start to drink more.
Medrol is down to 28 mg.
I take the Kayexalate early in the morning.
It tastes sweet but you feel sand in you mouth. I take it with yogurt and that eliminates the sand sensation.
I took it a few times before, so I expect a one-time diarrhea within 30-60 minutes.
Wrong. I have diarrhea all day long. Before the evening pills we call the transplant resident on call. I take 500 mg cellcept and wait with the 250 mg pill. No one calls back. After a couple of hours we call again. We find out that our phone doesn't ring! What a bad timing! The doc says that the Kayexalate increases the effect of the cellcept and to stop the cellcept until the diarrhea is over.
Dr. Dagher calls. The surgery will be done on Tuesday, or Friday.
Oct-13-2001, Sat.
Weight 74.7 kg.
No more diarrhea.
I take the day off, sleep most of the time, to compensate for many sleepless nights.
Oct-14-2001, Sun.
A non-eventful day.
Oct-15-2001, Mon.
The Tuesday surgery has been postponed.
The surgeon decided that without pressure in the bladder the connection would have better odds of healing, and would save me another surgery. One more time - Foley for 3 weeks. This one is #22, originally designed for Elephants...
And our phone has been fixed.
Chills all night long.
Oct-16, 2001, Tue.
Fever, 38 C. Nephrology clinic. We are there at 9am.
K=6.1. This cannot be an error. They take blood and urine cultures.
I am admitted to the hospital. I get into my room at 2pm. A nice surprise - it is warm and cozy.
At 4pm I am taken to ultra sound. They don't see any fluid collection around the kidney.
Dr. Venkat comes. I feel better when I see him. He has a lot of patience, he listens to me and answers my questions.
I hear him lecturing young doctors and he is as good in teaching as in medicine.
He thinks that the Prograf could be the reason for high potassium.
I discuss with him the effect of the Kayexalate. He tells me about Florinef, which reduces potassium w/o side effect.
My urine output is down to one half of other days and that make us worried, later we learn that my creatinine is still 2.
At midnight my potassium is 6.3. Two nurses come to tell me that the night shift doc wants me to take Kayexalate...
Oh no! No way! They give me IV of dextrose and insulin and something with calcium.
I think to myself that maybe I made a mistake by refusing the Kayexalate. Maybe I would be dead at dawn?
Oct-17-2001 Wed,
Morning and I'm still alive. A doc comes to tell me that my potassium is down to 5.3.
My urine output increases from 50 cc/hour to 70.
I am sure that healthy people have fluctuations every day but they don't measure it and surely don't think about it.
At noon they tell me that the all cultures are negative and they are going to discharge me, but it is 5:30pm when we leave.
They want to take a sample from the leak in my belly. I open the dressing and it is almost dry, after 17 hours.
Oct-18-2001, Thu.
I open the dressing again after 20 hours and it is dry. Am I done with that leak? This will make my life easier.
It is a terrible feeling that bodily discharge is uncontrollable and may start any time without warning.
Oct-19-2001, Fri.
Seven weeks since transplant.
Clinic. Creatinine=2.1. Potassium is down to 5.0. The Florinef works!
Medrol is down to 26 mg.
Discharge from my belly gone. I still use dressing, just in case. I hope that it doesn't leak somewhere else inside...
Oct-20-2001, Sat.
Weight is 75.5 kg. I must be careful not to get dehydrated.
Oct-21-2001, Sun.
Wonderful news: No news!
Oct-22-2001, Mon.
More wonderful news: Creatinine down to 1.7, HGB up to 10.3.
Urine output 1.5 liter w/o diuretics.
Bad news: K=6.1, meaning more Kayexalate to enjoy... Just once a week.
In the evening the dressing is a little wet, but not soaked.
Oct-23-2001, Tue.
Friends call and want to know how it is going.
For people not involved in kidney failure it is all mystery. They assume that once you have a transplant it is either success or failure, as in most surgeries. They think that the phrase 'The surgery succeeded but the patient died' is a joke.
It is difficult to explain that 8 weeks after transplant we don't know what lies ahead and we have no clue whether it will be a long term success or not.
I tell my friends and family that the kidney is slow to recover but I'm off dialysis for a month.
Oct-24-2001, Wed
Some good outcome: For a week I sleep well w/o sleeping pills, after taking them for 17 years.
Oct-25-2001, Thu.
Clinic. More good news - Creatinine=1.5, K=4.6. Kayexalate on hold.
Lasix resumed, 20 mg a day to remove more fluid.
Oct-26-2001, Fri.
8 weeks since transplant.
Medrol is down to 24 mg.
Oct-29-2001, Mon.
Clinic. Creatinine=1.4, K=4.6, bun=45.
Foley #22 has been replaced by #16, what a relief!
Scheduled to Nov-16, I'll have a test for the possible urine leak.
Oct-31-2001, Wed.
Two-month transplant anniversary.
Nov-1-2001, Thu.
Clinic. Cr=1.4, K=5.1, Bun=49, HGB=10.5, Ca=11.2.
A little urine is found in the drain from the incision, no doubt, there is a leak in the ureter.
I see Dr. Goggins, my dialysis neph for the last 8 years, now in post-transplant Nephrology.
She reviewed all other docs' and lab's reports. She will coordinate an appt with the surgeon, Dr. Dagher.
Maybe the leak test will be performed earlier?
She thinks that the Bactrim too increases the potassium and cut it down.
She checks my swollen feet and ankles and doubles my Lasix.
I ask her about my other labs, e.g., phosphorus. The last one on the computer is from a couple of weeks ago, it is 2.8, quite low. She decides to take another one.
Here is a list of my daily medications:
EPO ------ 10,000 unit/week
Prograf -- 2x5 mg
Cellcept - 2x500 mg
Cytovene - 2x500 mg
Nov-2-2001, Fri.
At 4pm we receive a call from Nephrology. My phosphorus is low (1.3) and I should take a phosphorus supplement.
They call Rite Aid near home. After a while they call again, Rite Aid doesn't carry the one they want.
We tell them to try the pharmacy in the hospital. We call the pharmacy later - no prescription.
The phosphorus may also reduce my calcium, which is little high.
Nov-3-2001, Sat.
Weekend is a bad time for getting unknown meds. No prescription in the pharmacy.
We call the nephrologist on call. He checks and tells us that my phosphorus is 1.3.
He arranges the prescription for K-Phos-Neutral, which contains P=250 mg, Na=300 mg, and K=45 mg.
I have to take 3 a day.
If it was not for my elevated potassium, one cup of milk provides the same amount of phosphorus...
Nov-5-2001, Mon.
Clinic. Cr=1.2, K=3.3, Ca=10.5.
Are these mine? 4 days ago my potassium was at its high limit, now it is below the low limit?
And could the calcium go down after a few pills of phosphorus?
I talk to Dr. Dagher, my transplant surgeon. He decides to leave the leak test to Nov-16.
He still believes that the leak will heal by itself.
Nov-8-2001, Thu.
Clinic. Cr=1.4, K=3.7, Ca=10.7, Bun=41, HGB=11.
My neph thinks that the increased creatinine is due to the Lasix and cut it by half.
Florinef is cut down to 0.1 mg. My Hgb is up so Iron is stopped.
Low potassium was not a mistake.
My appetite and thirst are back, I eat 3 meals, got some color in my face and feel stronger.
Nov-12-2001, Mon.
The opening in the incision has closed completely, which doesn't mean that the ureter leak has stopped.
I have the feeling that the docs mix up the two different leaks.
Clinic. Cr=1.3, K=3.8, Ca=10.5, Bun=41.
Florinef is stopped. Cellcept increased to 3x500 a day.
Urine infection, somehow with no fever. Cipro 2x500 for 2 weeks.
This infection changes all schedules. Tomorrow I'll have the foley replaced.
The leak test planned for the 16th has been postponed (again). Another one is scheduled for the 28th.
It's a long story that cannot be made short.
Nov-13-2001, Tue.
Ultrasound shows a little fluid accumulation.
Phosphorus is still too low.
Nov-16-2001, Fri.
Clinic. Cr=1.3, K=4.7, Ca=10.1, Bun=39, Glu=107.
This is the first time after transplant that my glucose is in the range (<110), never had any problem before.
I read that with Prograf, more patients appear to develop diabetes post transplant.
From now on my clinic visits will be just once a week.
Nov-21-2001,Wed.
Ultrasound shows less fluid accumulation than last week.
Nov-23-2001, Fri.
Clinic. Cr=1.3, K=4.1, Ca=10.6, Bun=33, Hgb=10.7, Wbc=5200.
No more potassium restrictions, but I don't overdo it before I am fully confident.
Bun is coming down nicely, laughing at the excess protein that I eat every day.
I eat about half a pound chicken, which contains 60 gram protein, and 35 gram more from whey protein.
Medrol (Prednisone) is already down to 16 mg a day.
Now they perform a Benign Neoplasm of Prostate (non-cancerous enlargement of the prostate gland) in men.
This is required because my urinary system hasn't been working for 15 years.
The procedure I have is called - Transurethral resection of the prostate (TURP): Surgical removal of the prostate's inner portion by endoscopic approach through the urethra, or in English- scrapping the prostate from the inside. This is the most common active treatment.
More info can be found at: Benign Prostatic Hyperplasia
Both procedures are done under sedation and a spinal shot. I am not asleep but I don't feel anything at all, not even being touched. I have a new foley catheter, the mother of all foleys (#24) but it will be removed for good in a few days.
I am out of the OR at about 12pm, and into the recovery room.
Now that the sedation runs out of juice, I have an agonizing pain for the rest of the day.
They repeatedly ask me how much pain I have in a scale of 1 to 10.
It is 8, and I am close to screaming. Morphine shots help a little to reduce it to 5.
My wife comes in. We wait until 5pm to be transferred to my room.
Nov-29-2001, Thu.
Morning - No pain! It is all over.
Blood test is ok: Cr=1.1, Bun=29, P=3.4, HGB=11.
They want me out of bed. I can do that. Breakfast then lunch.
Cipro for more 14 days.
Nov-30-2001, Fri.
Today is my three-month transplant anniversary.
We don't celebrate yet. We'll wait until the end of the year...
Dec-4-2001, Tue.
Clinic visit:
Cr=1.5, K=4.5, Bun=39, Ca=11.5.
Dr Goggins. She says that the meds I received in the hospital increased my prograf level in the blood.
Prograf is cut down to 5+5.
Another visit to Urology in the afternoon.
The foley is removed, after 7 weeks. Take my word on it - it is no fun at all.
Back home, 7pm, I feel the urge but no urine is coming.
I am scared to death: what if the kidney has been damaged?
How I solved it is beyond the scope of this story, suffice to say that I have a new foley, not a huge one, and I am scheduled to see my urologist on Friday.
In the morning the kidney is still working and everything is back to normal.
Dec-7-2001, Fri.
Clinic. Cr=1.4, K=4.9, Bun=45, Ca=11.2, P=2.1, Glu=90.
I see my urologist in the afternoon. I still have the foley.
Medrol is down to 12 mg. Prograf reduced to 4+4 mg.
Dec-11-2001, Tue.
Clinic. Cr=1.3, K=4.2, Bun=36, Ca=10.4.
Cellcept is up to 2x1000. Cytovene stopped.
Dec-14-2001, Fri.
Medrol is down to 10 mg. I ask my neph whether there is a chance to go below that.
"Don't push it" says she...
I see my urologist. Stent is removed (at last). Foley stays. Back to square one.
Dec-17-2001, Mon.
Since Friday my urine output is down 30%. I am very worried. Is it a leak? Or is it the kidney?
Clinic was scheduled to Tuesday but I couldn't wait and re-scheduled.
Cr=1.2, K=3.8, Bun=32, Ca=11. Kidney is OK.
Ultra sound is performed in the afternoon.
I imagine them finding a swimming pool inside my belly and rushing me to the OR.
Wrong! No new accumulation of fluid! That is, no leak and not another surgery!
Dec-19-2001, Wed.
Dr. Peabody, my urologist. They do X-ray of the bladder. Something looks out of place. Endo-Cystoscopy, that is looking inside the bladder, doesn't show much. It should be done in OR, with more advanced scope.
Dec-21-2001, Fri.
6am. Once more in the OR. Gown, bed, IV, blood work, forms to sign. Same questions again and again, asking me whether I have had a zillion of diseases, most of them I have never heard of.
I am taken to the OR. Sedation. I am dreaming.
I probably bite my lips because I have two big bruises on my lower lip.
I hope that this time he has found the plumbing problem.
Foley again and appointment for Wednesday. Once more I count the days until Wednesday...
Every treatment like this leaves me with a pain for a day or so.
Dec-26-2001, Wed.
Today I am 61. I didn't have enough time to get used to 60...
When I started dialysis I couldn't even dream to see the year 2000, and now 2002 is coming.
Clinic. Cr=1.4, K=4.3, Bun=27, Ca=11.1, P=2.5.
Potassium is ok for a couple of months.
Bun is the lowest ever.
Calcium is still a little high, should be <10.2.
Phosphorus is at the lower limit, after being 1.3 in November.
Dr. Fisher. One of a rare kind. He encourages me to ask questions and answers them all. We have a dialogue.
He gives me a new diuretic pill - Metolazone. Maybe it will help removing the swelling form my feet?
Foley is removed for the 4th time. We stay in the hospital for 4 more hours to be sure that everything works.
We spend the time walking in the hospital, stopping here and there, eating and drinking.
With the foley it was hard to walk more than a few steps.
Back home - it is still working.
Dec-27-2001, Thu.
No foley for a day. I can urinate on my own, after 15 years of drought.
Now I have to be re-trained... but it's like riding a bike... you never forget really...
Trouble is, I can't sleep at night because I pee every hour, day and night. But I have patience.
I don't take the Metolazone because I don't want to pee every 30 minutes...
Jan-1-2002, Tue.
A Happy New Year!
Jan-2-2001, wed.
Clinic. Cr=1.5, K=4.3, Bun=28, Ca=10.5.
Prograf increased to 5+5 mg.
Jan-4-2002, Fri.
Cipro stopped, after almost two months. At least I was protected from Anthrax...
Jan-8-2002, Tue.
Elvis Presley birthday. Without having kidney failure he is now pushing the daisies while I can spray them with my pee.
Clinic. Cr=1.9, K=3.8, Bun=50, Ca=10.7.
What's that? Rejection? Something has gone wrong.
Dr Fisher. He acts fast. In the afternoon I go to ultra sound and then I see my urologist. They are looking for plumbing problems but find none - neither obstruction nor leak.
Jan-9-2002, Wed.
Clinic. Cr=2.1, K=3.5, Bun=54, Ca=10.7.
Dr. Fisher decides on biopsy, and it is scheduled to 2pm.
We drive home and come back. We live 30 minute away from the hospital. What an advantage! A few years ago I rejected the idea of signing up for transplant with the Cleveland Clinic in Ohio, because it was 3-hour drive.
My potassium is low, so it is about time to enjoy potatoes for lunch.
2pm. Once more in ultra sound. Dr. Fisher and Dr. Karthikeyan. They guide the tech to find the exact point on the kidney and mark it on my belly. The place is numbed and the biopsy needle goes in twice. I don't feel a thing.
Another doc checks the samples to ensure that they are really kidney tissues.
Now I have to stay in bed for 2 hours. An hour passes before they move me to the short stay unit.
5:30pm. All done and we drive home.
Jan-10-2002, Thu.
Clinic. Cr=2.0, K=3.7, Bun=53, Ca=10.5.
Dr. Fisher can't wait and tells my wife in the hall - What I am going to tell you will make you happy.
I think to myself - happy because they have found something or because they haven't?
Well, good news indeed. No rejection, it looks like Prograf toxicity.
I start 3 mg Rapamune. No change in Prograf yet, but it will be decreased and may be cut-off completely.
Rapamune should be taken 4 hours away from Prograf.
A new adventure: Prograf may cause diabetic while Rapamune may cause high cholesterol...
So far I have survived the side effects of the medications, let's hope...
The yo-yo game continues: Cellcept is reduced to 2x750 mg.
Jan-11-2002, Fri.
For a week I lose weight on purpose and today I am 72 kg (158 lbs.). Been there before - 40 years ago...
The swelling in my right foot has gone completely. The left foot is almost back to normal.
Jan-18-2002, Fri.
Clinic. Cr=1.9, K=4.3, Bun=53, Ca=10.7, Hgb=11.7
Prograf is reduced to 2+2 mg. Bladder infection - Pseudomonas Aeruginosa, Cipro for 10 days
Jan-22-2002, Tue.
Clinic. Cr=1.9, K=4, Bun=50, Ca=10.5
Prograf is reduced to 2+1 mg.
Jan-23-2002, Wed.
Prograf stopped. Rapamune down to 2 mg.
Jan-29-2002, Tue.
Clinic. Cr=1.8, K=3.7, Bun=31, Ca=9.9, P=3.2.
Once the phosphorus and calcium are in range my diet is more liberal.
I eat diary food in moderation, until the calcium level is stable.
Bad news dept. Hgb=9.7, Wbc=2.7.
Cellcept down to 2x500mg. Lasix is up to 80mg. Cipro for more 10 days.
Jan-31-2002, Thu.
Five month transplant anniversary.
Here are my pre-transplant plans and what happened to them:
>I'll buy a quart-size cup.
Not yet, I drink from a 12 floz cup.
>I'll drink Coke from a family size bottle.
I drink Coke from half liter bottles.
>I'll eat every food with high potassium and phosphorus. Say Cheeeeese...
I eat potatoes almost every day, no limit on phosphorus, cheese, pizza, chocolate, pancakes.
>I'll eat vegetables and fruits every day.
The fruit I like most is grapefruit, which I shouldn't eat.
I don't like bananas.
I eat salads as before.
>I'll drink milk and fruit juices.
Less milk, more fruit juices- apple, cranberry, grape.
>I'll leave the toilet sit UP at all times.
Not yet, I still measure the production every day.
>I'll buy a Harley.
I haven't driven my car since the transplant... so this will probably wait for better times...
>I'll try to thank the donor family, if they wish to make contact.
I thank them every day in my heart but making contact has to wait until I am fully recovered.
Feb-5-2002, Tue.
Clinic. Cr=1.8, K=3.9, Bun=29, Ca=10.7
Feb-8-2002, Fri.
Urology, Dr. Peabody. Checking narrowing of the urethra.
Feb-12-2002, Tue.
Clinic. Cr=1.6, K=4, Bun=28, Ca=10.8
They give me iron (Infed) IV. This takes about 1.5 hours. No side effects.
Feb-19-2002, Tue.
Clinic. Cr=1.5, K=3.6, Bun=26, Ca=10.5
I eat baked potato every day. Avocado too. Better than potassium supplement...
Feb-21-2002, Thu.
Cipro for more 6 weeks. Lasix is up to 100 mg. Rapamune is up to 3 mg.
With the Lasix I produce 1.7 liter, but sometimes it is over 2 liters.
Mar-1-2002, Fri.
Six month transplant anniversary.
The kidney works, but I can't say that my quality of life is better than it was on hemo.
I know that it may be temporary and someone wrote to me saying that she had troubles for 4 years and after that it was ok.... But I don't have that much time for waiting....
While on hemo I was in good physical shape and after dialysis I felt good enough for doing anything.
In the summer I went swimming on non-dialysis days.
I learned how to make the best of my diet and with some planning I could eat everything I wanted.
I had low BP so sodium was never a problem.
But I was afraid that after so many years my health is going to deteriorate, the shunt wouldn't last forever, in short, I was tired of dialysis.
For the first few months after transplant we went to the clinic/hospital 3 times a week, like it was on hemo, but I drove myself to hemo and now my wife drives me. Luckily it is only 30-40 minute drive.
Now it is only once a week.
Here is a list of my daily medications:
Rapamune-- 3 mg
Cellcept - 2x500 mg
Medrol --- 10 mg
Bactrim -- 1 pill
In the first couple of months I had episodes of diarrhea from the anti rejection drugs, lasting for a few days.
The Rapamune elevates the cholesterol and triglyceride to dangerous levels.
I had a foley for 10 consecutive weeks and now, 2 months without it, I pee every hour day and night...
I have Pseudomonas infection in the bladder. I took Cipro for many weeks, and probably will for many more weeks to come.
My PTH was high before and is still high. My calcium is a little elevated so I don't eat dairy food.
I cannot eat grapefruits.
I still need Epo and iron.
I don't make enough urine without Lasix, and if I drink more it is accumulated in my ankles.
In fact, I drink no more than I used to on hemo.
Anyway, sodium is out, and potato w/o salt is not much fun as I expected...
With these swollen ankles I can't put on shoes and I wear slippers.
I can't swim in the open anymore because the sun isn't good for my skin.
I had to give up alternate meds that were very effective for me, because of rejection risk.
I took natural meds for cholesterol, triglyceride, and heartburn, and they all worked fine for me.
Now I have to take Zocor, which is not good for the liver.
However, the heartburn med was made out of cabbage so now I eat a lot of cabbage and I don't need Zantac.
And the good news:
I have never had rejection.
I haven't gained any weight or developed moon-face.
Numbness in hands while sleeping has gone.
No more sleeping pills, after 17 years.
I can eat phosphorus and potassium as much as I want. No more phosphate binders.
Baked potato or hash brown every day. Avocado too. Orange juice in the morning. Oatmeal for breakfast.
I have never had mood swings, which most patients have.
I am usually optimistic and have a very supportive wife.
And I am happy that I don't need dialysis.........
But if I ever have to go back on hemo it won't be the end of the world.
However, next time I am sure to go for home dialysis.
Apr-1-2002, Mon
7 months after transplant, and I am more optimistic.
I see a doctor once a month. I still go to the clinic for Epo and blood work once a week.
I take 4 mg Rapamune.
Medrol is tapered down by 2 mg every month, from 10 mg down to 4 mg/day.
After discussing the matter with my neph I decided to stop the Zocor and return to the Flaxseed oil.
No one can say definitely that it absorbs the anti-rejection drugs but no one can say that it does not.
I increase the dose carefully and check my labs. Currently I take 2 grams a day and intend to go up to 4 gram/day.
I make more urine. Over 2 liters a day, after making 1.8 liter for a long time. Maybe the kidney works better?
More urine means more potassium. I eat considerable amount of potatoes every day, better than taking a supplement.
I still have a lot of fluid in my left foot. My docs have no clue.
For the last week I elevate my foot in bed, using a big pillow, and it becomes much better.
Peeing during the night is still a problem but less frequent. I can sleep up to two hours at a time.
Spring is here and who needs more than sunshine and blue sky?
May-1-2002, Wed.
8 months. I am still optimistic.
Rapamune is up to 5 mg.
Medrol is down to 6 mg and my neph says - indefinitely.
The Flaxseed oil does not persuade my cholesterol. It is 390 and I start taking 40 mg Zocor.
Bladder capacity is up to 150 cc. I still have pseudomonas infection but the bug is immune to Cipro.
Somehow the bug and I live in symbiosis and I have no fever.
My weight is 78 kg. I zip up my jeans and my size is back to 38.
After 7 months I drive my car again.
I leave home for a short time - buying a car, eating out, etc.
May-8-2002, Wed.
Clinic. My potassium is 2.6. The staff is upset. They consider me almost DOA (dead on arrival).
A nurse rushes to me with orange juice and 4 potassium pills, totaling1500 mg (40 meq).
More pills to add to my daily ritual........
Since April I have mild pain in my right foot that spreads to the knee, and soon my left foot followed.
I read on a message board that this pain could be the result of high Pth that causes small fractures in the bones.
I ask for Pth test.
May-13-2002, Mon.
The clinic calls. My Pth is 900. High enough to see a surgeon.
May-21-2002, Tue.
Appointment at general surgery. Dr. Talpos. He is good. Surgery in two weeks.
Jennifer, his nurse, takes care of everything. Once more I fill forms with the story of my life.
May-28-2002, Tue.
Ekg, chest x-ray, blood test. My Ekg looks like Rumba - three fast, one slow....
Jun-5-2002, Wed.
6:30 am. I am in. same procedure one more time - gown, bed, take off everything. IV. Paper work.
8:30 am. Parathyroidectomy. 16th Surgery.
12 pm. I wake up. No tube in my throat, but I do have sore throat.......
3 pm. I am in my room, H431. This is the first IV in years that really works. They give me potassium.
The doc comes to see me. I tell him that I don't think that I need that much potassium and he stops it.
4 pm Blood test.
Supper. The nurse brings potassium pill. I decide to wait for the blood test.
I was right, K=4.9. I don't take the potassium pill.
10 pm, last blood test for today. I can't sleep. The stitches itch.
Jun-6-2002, Thu.
Blood test at 4 am, then at 2 pm. At 5 pm they decide to send me home.
Somehow we never leave before dark. It is close to 8pm when we leave.
I am bruised all over. Around the surgery it is real scary, but no pain.
The only pain I have is sore throat from the breathing tube... it was expected but not welcome...
Jun-7-2002, Fri.
Clinic. Dr. Talpos one more time.
What words of appreciation would you say to a surgeon?
I couldn't say that I enjoyed being under his knife...
Yes, I could! That's what I wrote on the card that I sent him a few days later.
He removes the stitches. Happy landing!
Parathyroid.
There are 4 parathyroid glands that produce Pth (pt hormone).
The Pth controls the balance between calcium and phosphorus in the bones and in the blood.
Hyperactive parathyroid is common among kidney failure patients, for some it begins even before dialysis.
I was lucky enough to not suffer from it for my first 15 years on the machine.
The Pth should be below 70 (US units). Up to 200 is usually not treated. Above that synthetic vitamin D is given. Rocaltrol (Calcitriol) is a pill. Calcijex and Zemplar are given IV.
In all cases the balance between phosphorus and calcium is lost and both become uncontrollable.
Calcium moves from the bones into the blood stream. The bones become brittle and the excess calcium in the blood is deposited in the joints and blood vessels. When the Pth is above 1000 surgery is unavoidable.
In many cases the parathyroid calms down after transplant. Not so for me...
In the surgery part of the glands is removed. Soon after the surgery the Pth level goes down, as well as the calcium.
For a while the bones suck the calcium back and the calcium level goes down. I take calcium supplement and Rocaltrol.
To learn more go to http://www.nlm.nih.gov/medlineplus/parathyroiddisorders.html
The good news is that dairy food is back on the table. Got milk?
Milk with my cereals - they float in the milk...
I take supplements for all electrolytes that were restricted on dialysis -
potassium, phosphorus, calcium, and vitamin D.
My magnesium is also in the low but whey protein will take care of that.
For years I watched the high limits, now I have to watch the low limits.
Nobody told me, but as a veteran dialysis patient I know that calcium negates phosphorus, so I don't take them both at the same time.
Jun-14-2002, Fri.
Numbness in my hand and face. A million ants are dancing on my face.
What could it be? Potassium? There are no warnings for potassium.
I remember that they asked me about that in the clinic and I call them.
It's low calcium. Double the calcium pills and the Rocaltrol.
It works!
Jun-21-2002, Fri.
My Cholesterol is under control (250), my triglyceride is sky high.
Rapamune is the reason and they reduce it to 3 mg/day. I also start Lipitor instead of Zocor.
Jun-25-2002, Tue.
We see Dr. Talpos again. We love him.
There are many good doctors in Henry Ford Hospital, but he scores 11 in a scale of 10.
The nurse Jennifer is also wonderful.
My calcium is 9.6. Magnesium is 1.9. Good numbers. I can take fewer pills now.
And my Pth is 11.3. Wow! Down from 900!
Pain in feet has gone!
SHOES! This is the first day in nine months that I could put on my old shoes.
Wonderful feeling! I am a human being again! And one and a quarter inch taller...
I walk without any difficulty through the hospital and to the car in the parking lot.
Jun-26-2002, Wed.
For a while I don't see well with my right eye. Seems like a curtain is in front of my eye.
Dr. Finlay. Optometrist. Eye drops. Light into my eyes. Direct light generates glare.
Cataract it is. Age plus prednisone. My right eye number is up from 2.75 to 4.75.
I can change my eyeglasses but the doc recommends surgery.
Jul-07-2002, Sun.
10 months after transplant. My creatinine is stable at 2.0.
I feel better and stronger every day. Maybe it is the turning point?
I am hungry and think about eating all the time, I watch FoodTV to get new ideas.
Grilled lamb, chicken, shrimps, corn, eggplant, zucchini. Have I left something out?
I try all fruits and veggies we can find. I don't gain any weight.
I avoid sweets, chocolate and cookies. Hardly any Coke; I prefer milk and orange juice.
Baked potato every day, tomatoes too. For snack I eat radishes and carrots...
Jul-10-2002, Wed.
Dr. Dilly. Ophthalmologist (pronounced: eye doctor). Eye drops again. The tech checks first, then the doc.
They'll do the right eye. The cataract will be removed and a synthetic lens will be implanted instead.
I have an appointment for ultra sound for Jul-29 and surgery on Aug-13.
Jul-29-2002, Mon.
Ultra sound. By measuring my eye they can match the new lens so that I won't need eyeglasses.
After that I go to admission and then meet with the anesthetic nurse.
Once more forms and questionnaires to fill.
There is an open spot for tomorrow. I go for it.
Nothing to eat after midnight. I knew that.
Jul-30-2002, Tue.
7:30 am. We are there. I am in. This is my first surgery in which I don't have to undress completely. Well, you don't have to take your pants off for eye surgery.......
The nurse prepares me for the surgery. What are you here for today she asks? I know what I am there for. It's my right eye, not my left knee.
She puts a sticker above my right eye marked with R.
Good idea. The doc looks from the other side and my right eye is to his left.........
Every 2 minutes she puts another kind of eye drops into my right eye. Some are stingy.
This takes about 45 minutes. She also puts IV in my arm, just in case. This surgery is with just local numbness of the eye.
Dr. Dilly comes. I am almost ready. Last chance to pee. I always have to consider that.
I am taken to the OR. More eye drops, more burning. Why can't they numb the place first?
A plastic sheet covers my face, sticks to the eye.
The doc doesn't see me, just my eye. Imagine a sheet of plastic with one eye looking at you.....
A device to hold the eye open. He tells me what he is doing, I hardly feel anything.
Every few seconds my eye is rinsed with water.
Look at the light. I do.
Bright light.
Nothing, just glare. Probably my lens is out.
Light is back. My new lens is in.
- How many fingers do you see?
- Two. (And what if there were three?)
You did well, says Dr. dilly. You did too, say I.
Good doctor but it was no picnic.
And there's another one to come sooner or later...... I would rather have another transplant........
To learn more goto http://www.nlm.nih.gov/medlineplus/ency/article/001001.htm
Out of OR. Orange juice and crackers.
Instructions.
More eye drops.
Huge dark sunglasses.
Two kinds of eye drops every two hours until bedtime, and four times tomorrow.
We are home. I don't see anything with my right eye.
It is easier to keep it close. Once in a while I try it.
There is mud inside my eye. It's like driving with a muddy windshield with no wipers.
Evening. TV is open. Hey, I can see!!! I can see through the glare without eyeglasses!!!
Dr. Dilly calls. I tell him that I am fine. Few more days he says.
Before going to bed I have to tape a protective cover over my eye.
Jul-31-2002, Wed.
Morning. I can see much better. Still some glare.
Throughout the day it becomes better.
16:00pm. Clinic. Dr dilly one more time.
My new bionic eye is tested. My vision is 20/20 (6/6).
After 50 years of nearsighted it's time to remove the right lens from my eyeglasses.
I still need eye drops for a couple of weeks, sunglasses, and protective cover at night.
Now the world is brighter, and I can see that my left eye turns everything a little greenish.
Aug-02-2002, Fri
Clinic. Dr. Fisher. Creatinine is down to 1.9, after being 2.3 last week. Scary week it was........
Aug-16-2002, Fri
Phosphorus 4.7, no more phosphorus pills.
Aug-30-2002, Fri.
Calcium is a yo-yo for the last month. Bouncing from 5.5 to 11.
The neph fine tunes the doses of calcium pills and Rocaltrol
Bactrim pill is discontinued one year after transplant..
I can't forget that for another family it is a gloomy anniversary of the death of their loved one.
Dear donor's family, I don't know whether you thought about organ donation before, or it was a moment decision, but anyway, bless you for that decision and for giving me new hopes and new life.
And for anyone who reads this, about 70,000 people in the US are currently waiting for an organ. Some of them will die before they get one.
Rapamune 3 mg
Cellcept 2x500 mg
Medrol 6 mg
Lasix 80 mg
Metolazone 5 mg
Folic acid 5 mg
Centrum 1 pill
KCl 2x20 meq
Oscal 4x500 mg
Rocaltrol 0.5 mcg
Lipitor 40 mg
EPO 10,000 units weekly
I'll buy a quart-size cup. I didn't.
I'll drink Coke from a family size bottle. I drink from a regular bottle.
I'll eat every food with high potassium and phosphorus. I do.
I'll eat vegetables and fruits every day. I do.
I'll drink milk and fruit juices. I do.
I'll leave the toilet sit UP at all times. I was just kidding.
I'll buy a Harley. I don't think so.
I'll try to thank the donor family, if they wish to make contact. It's about time.
Loss of hair. Now I grow more hair and it is a little wavy.
Trembling hands.
High and low potassium.
Diarrhea and constipation.
Poor and immense appetite.
Low and high blood pressure.
I have never suffered from mood swings, depression, or developed moon-face.
During the dialysis years I couldn't sleep without sleeping pills, now I sleep like a baby.
Also I kept the home temperature at 76 F (24 C), now 70 (21) is just fine.
I lost a lot of muscle mass, now I exercise to gain it back.
I can't drink as much as I would like to. If I drink more than 2 liters (8 cups) I see it in my ankles.
Wherever I go I first look for the location of the rest-room...............
At night I still have to go every 2 hours. (I told you - I sleep like a baby).
Rapamune 3 mg
Cellcept 2x750 mg
Medrol 4 mg
Lasix 60 mg
Metolazone 5 mg
Folic acid 2 mg
Centrum 1 pill
KCl 2x20 meq
Oscal 4x500 mg
Rocaltrol 0.5 mcg
Lipitor 40 mg
Aranesp 40 mcg biweekly
Mar-11-2003, Tue. Prednisone free day.
A month ago my medrol was reduced to 2 mg/day, today it is history.
The price: increasing the cellcept to 2000 mg/day.
Also one baby aspirin a day to keep the blood running smoothly.
Mar-20-2003, Thu
I have low grade fever for a week. My doc says it is steroid hangover. May take a couple more weeks.
I have flu-like symptoms, weakness, aching joints, chills, and no appetite. Tylenol and Coke keep me going.
My Hgb is down to 10.9 after a long time it was above 12. My iron is also very low.
They take urine culture, just in case. It was negative a month ago,
Mar-24-2003, Mon.
Pseudomonas is back. Its sensitivity to Cipro is so-so. They tell me to take Cipro for 6 weeks.
Mar-28-2003, Fri.
I go to the clinic for another urine culture. They glance at it and send me to the hospital.
Fortunately, a private room is available.
An IV center-line is inserted in my chest, similar to dialysis catheter. This is done by special operations in radiology. They see how it goes in and don’t miss.
I am getting strong anti biotic IV. This one is called Cefepime.
Mar-29-2003, Sat.
All my numbers are low. They give me IV of potassium, magnesium, and iron.
Late at night we are home. I go to bed until Sunday noon.
Mar-30-2003, Sun.
Home care supply is delivered to our home and a home care nurse comes to teach my wife how to administer the anti biotic. Magnificent design - very easy to use. There are saline bags and bottles with the anti-biotic powder. The bottle fits into a quick connection onto the bag.
There are also connecting tubes and pre-filled syringes for flushing the line.
The nurse is Donna and she is wonderful. She asks and notices small details.
The urine looks ugly and I am worried about losing the kidney.
My wife is worried about losing me.
Apr-01-2003, Tue.
Clinic. Creatinine is 1.8. The kidney is not impressed by the infection. Urine culture comes negative. Hgb is up.
Apr-02-2003, Wed.
Kidney ultra sound. Looks ok. My potassium is low and every day I take 4 huge pills of 800 mg potassium each.
Apr-04-2003, Fri.
Infectious disease, Dr. Delbusto.
A patient in the waiting room is coughing incessantly. That's great; all I need now is SARS...
Anti biotic should be taken for 4 weeks. 3 more to go without a shower.
The home care nurse comes twice a week to change the dressing.
I still have fever, no appetite, diarrhea, a mild nausea, and I am tired.
Apr-09-2003, wed.
Fever no more. Appetite is back, slowly.
Clinic. Creatinine is 1.7.
They reduce my cellcept to 3x500 and put me back on 1 mg medrol a day.
While waiting we watch Saddam statue toppled in Baghdad on live TV.
Apr-11-2003, Fri.
Urology, Dr. Peabody. Checks the voiding and the prostate. Everything is okay.
He'll see me again in 3 months.
Apr-16-2003, Wed.
Surprise: creatinine is 1.5. Is it real?
My calcium is low and I take more calcium and Rocaltrol.
Apr-24-2003, Thu.
Creatinine is 1.4, couldn't be a mistake.
The schedule - urine culture on Monday, IV line out on Wednesday.
All urine cultures are negative, but to be on the safe side they want to be sure that there is no back flow from the bladder into the kidney.
Apr-25-2003, Fri.
Diagnostic Radiology. VCUG (Voiding CystoUrethroGram).
This procedure is usually done on small kids with uti or other urinary problems. They use a very small catheter, I hardly feel it because everything inside is half dead already from all past treatments...... Then they fill the bladder with dye and take pictures.
To learn more go to:
http://www.meddean.luc.edu/lumen/MedEd/urology/vcughome.htm
There is no reflux into the kidney and complete voiding. Also no obstruction in the urethra, just the flow is not perfectly smooth.
That means that there is nothing to do right now and hopefully the infection will not return.
I see the picture on the screen. Looks like hot air balloon over the Grand Canyon.....
Apr-30-2003, Wed.
Creatinine 1.4 once more.
IV line is out. After 5 weeks I look forward to a real good shower tomorrow.
Life is good, Chinese food too.
May-13-2003, Tue.
For a long time I had headaches and neck pain during the night. X-ray showed damage to cervical spine (neck).
In April I started physical therapy twice a week and today is the last one. The therapist is Jim and he is good. He worked on my neck every time and the pain has gone completely.
May-30-2003, Fri.
Creatinine 1.3 twice in a row. This kidney is amazing.
A month after my transplant they told me that I should be happy with creatinine of 2.5
Trouble is, I have staph infection and it takes 6 days to find an effective anti-biotic.
This time it is Clindamycin for 10 days.
Jul-22-2003, Tue.
Dr. Dilly. It is almost a year from my right eye cataract surgery and it's about time to do the left eye.
Jul-29-2003, Tue.
Pre-op meeting, surgery is scheduled for next week at noon.
Aug-03-2003, Sun.
I wake up early AM with a pain in my left eye.
Look at the mirror and can hardly see the eye.
Dark red all over with a bulge on the left.
ER. It is called Subconjunctival Hemorrhage. It isn't life threatening they tell me.
I knew that. Later I learn that sometimes it happens after transplant.
Aug-04-2003, Mon.
Eye doctor sees me. Eye surgery for Tuesday must be postponed.
I re-schedule for 4 weeks.
Aug-14-2003, Thu.
Black-out for 27 hours in most of the East Coast states. We have to throw away most of the food in our refrigerator. Luckily I am not on dialysis.
Aug-31-2003, Sun.
Today is my second anniversary.
We don’t celebrate as we always remember that it's a gloomy anniversary for another family.
At this time I was still in the OR and the surgeon couldn't find a place in the bladder to implant the ureter. I was lying on the table for 9 hours, from 7am to 4pm.
7 days after the transplant and not a single drop of urine. Your chances are 50-50 said the surgeon, which means, PRAY. I did, and many others prayed for me too. God was listening because urine came at last and I was counting cc's. I needed 4 more weeks of dialysis before the kidney was running at full steam. Dialysis now looks like a bad dream, but my still-working fistula is a reminder that it may be in my future again.
2 years w/o a single night of a good sleep. After almost 2 decades of draught I now pay my dues to Nature. At the beginning it was every hour, now I can sleep 2 straight hours……..
Luckily I have never suffered from the anti-rejection drugs, never had a rejection, didn’t gain weight, but other problems were showing up when least expected.
Do I regret? Certainly not!
Sep-02-2003 Tue. 11am.
Dr. Dilly one more time, fortunately there ain't going to be a third time.
This time it is easier and seems even shorter.
I go home with a designer dark glasses, good enough for any respected secret agent.
Sep-03-2003 Wed.
Dr Dilly. My vision is 20/20 in both eyes. After 50 years, good bye eyeglasses, hello reading glasses.
Sep-09-2003, Tue.
In July I started to walk almost every day in the neigborhood. At the beginning I could hardly walk a quarter of mile but gradually I increased it and today I have reached one full mile for the first time.
Sep-19-2003, Fri.
I visit Michelle, the transplant coordinator, and ask her to forward my home page address to the donor family.
Rapamune 2 mg
Cellcept 3x500 mg
Lasix 40 mg
Metolazone 2.5 mg
Folic acid 2 mg
Centrum 1 pill
KCl 3x20 meq
Oscal 4x500 mg
Rocaltrol 0.5 mcg
Tricor 54 mg
Lipitor 10 mg
Zetia 10 mg
Aranesp 100 mcg every 4 weeks
Feb-06-2004, Fri.
Pseudomonas is back. Low grade fever. Cipro for 2 weeks.
I make less urine and I take 60 mg lasix instead of 40.
Mar-05-2004, Fri.
All of a sudden my creatinine is 2.1 and I call the clinic.
I feel the symptoms of UTI and start Cipro.
Mar-08-2004, Mon.
Dr. Venkat. He says that I am dehydrated. I reduce my lasix from 60 mg to 20 mg.
Mar-10-2004, Wed.
Pseudomonas one more time. I take Levaquin 250 mg for 14 days.
Mar-17-2004, Wed.
Creatinine is down to 1.6. It was really dehydration.
Apr-09-2004, Fri.
Dr. Goggins. I start Prinivil 2.5 mg (Angiotensin-Converting Enzyme (ACE) inhibitor).
Since this med raises the potassium I decide to reduce my KCl to 2x20 mEq/day.
I start to reduce my zaroxolyn (Metolazone) gradually from 2.5/day to once every few days.
I have already gained 2 kg and my weight is stable at 84 kg.
Jun-03-2004, Thu.
At last my cholesterol is down to 180 and triglycerides 216.
My potassium is okay and I reduce my KCl to 20 mEq/day
Aug-06-2004, Fri.
Clinic visit. My potassium is 4.3 and I reduce my KCl to 10 mEq/day.
My HGB is constantly going down and it is now 11.4.
Aug-25-2004, Wed.
All of a sudden I have to go every 30 minutes and I feel burning. No fever thou.
Aug-27-2004, Fri.
Pseudomonas Aeruginosa once more. A nasty and persistent bug. Levaqiun 250 mg again for 14 days.
Transplant's 3rd anniversary.
A "gift" from the government: my Medicare coverage has expired.
Sep-01-2004, Wed.
An unscheduled visit to the clinic. My creatinine is 2.2.
No wonder, because I reduced my drinking from 6-7 cups a day to 4-5, so I could sleep one full hour between visits to the bathroom.
Potassium is 4.7 and I stop the potassium supplement.
Sep-03-2004, Fri.
Creatinine is down to 2. Urine culture is negative.
Oct-05-2004, Tue.
First cold since winter 2001. No fever, just sore throat.
Oct-09-2004, Fri.
Despite the shortage of flu-shots I get mine in the clinic w/o even asking.
Nov-02-2004,Tue.
Election day. Labs day. Just before the blood is taken I think to myself - what if the creatinine is 2.5?
It is 1.5. Yippee!!!
Rapamune 2 mg
Cellcept 3x500 mg
Lasix 20 to 30 mg
Metolazone 2.5 mg occasionally
Folic acid 2 mg
Centrum 1 pill
Oscal 4x500 mg
Rocaltrol 0.5 mcg
Prinivil 2.5 mg
Tricor 54 mg
Lipitor 10 mg
Zetia 10 mg
Aranesp 100 mcg every 4 weeks
Jul-16-2005, Sat.
Pain in the lower back, right thigh.
From the beginning of the summer I walk a mile every day.
I take pain relievers and continue to walk.
Aug-07-2005, Sun.
I have chest pain on my right side.
I walk but it is painful to take a deep breath, so today is my last walk.
Aug-08-2005, Mon.
Temp=37.5 C (99.5 F). PCP. X-ray, hip and chest.
Nothing in the hip, but early signs of pneumonia, you know where.
Levaquin for 10 days. Follow up in 2 weeks.
Transplant clinic calls. If the symptoms do not improve they want to see me.
Aug-10-2005, Wed.
Temp=37.6 C (99.7 F).
Transplant clinic. The last thing I want now is hospitalization.
Labs: Creatinine=1.9, K=4.7, Ca=10.1, Hgb=11.4. The docs aren't worried. They lower my Rocaltrol to 4 a week.
They change the antibiotic dose and send me home.
Aug-19-2005, Fri.
Chest pain gone, temperature is down to normal. Pain in the thigh radiates forward. The pain reliever is less effective.
I see a Bone and Joints Doc. He looks at the X-ray and thinks it is from the spine. He sends me to CT and physical therapy. The CT is scheduled to Monday morning. Excellent service
Aug-22-2005, Mon.
7:00 AM. CT. No die (contrast). The die may shut down the kidney. That wasn't a problem when I was on dialysis.
I lie on the table, the machine beeps and blinks and in 5 minutes I am done.
I still remember my first CT some 20 years ago. Each cycle took about 30 seconds (hold your breath.......breathe), and then 2 minutes for processing. Similar CT used to take about an hour.
I also have chest x-ray taken.
Aug-23-2005, Tue.
Doc appointment. No change in right lung, something is still there. The doc isn't happy, neither am I.
No pain, no fever, so what is it?
Another CT, this time for the lungs, is scheduled to Thursday morning. No contrast!
Aug-24-2005, Wed.
This week is dedicated to the clinic. Today it's the eye doctor turn.
Vision is still 20/20 (6/6). Come again in a year.
I hate it when they dilate my pupils, but I always have the secret service's sunglasses with me.
Aug-25-2005, Thu.
7:30 AM. CT one more time. 5 minutes and I am out. I don't even have to undress.
Aug-26-2005, Fri.
6:00 PM. A doctor calls from internal medicine. The CT still shows pneumonia.
He wants me to go to emergency room. No way Jose!
After the bad experience I had with ER in the past I have learned my lesson.
I call the transplant's doctor-on-call. I tell him that I feel okay and he wants to see me on Monday.
Weekend is the worst time to be sick...
Aug-29-2005, Mon.
8:00 AM. Transplant clinic. Creatinine=1.7, Hgb=11.6.
I see the CT of my lungs.
The problem in the lung is not clear. My doc thinks it could be yeast.
I see a pulmonary doctor. He wants to collect some fluid from the lungs (with a needle, local anesthesia).
Appointment is set to Thursday. He also orders a TB test (called PPD skin test), which leaves a huge bruise on my right arm.
Since my transplant I am easily bruised. The bruise is not from the injection but from the pen mark that the nurse circled around the spot. I hope that the bruise will not hide the result (positive: firm red bump, negative: nothing).
To learn more goto: WebMD
The whole day is spent in the clinic. The good news is my labs: Creatinine=1.7, K=4.1, Ca=9.7.
I decide to reduce my rocaltrol to 2/week.
Transplant's 4th anniversary.
In the morning I take a blood-clotting-time test (called PT/PTT).
To learn more goto: WebMD
1:30 PM. Physical Therapy. The Therapist is Jim and he is good. He checks my CT results, my spine and muscles, and suggests a few exercises. After that I am connected to a machine that stretches my spine... with a 50 lbs pull...
Sep-01-2005, Thu.
Ultra Sound. They check my lungs for fluid accumulation so they can pump some. Surprise, surprise: none is found, so no needle and no pumping. In fact, the doctor told me that the fluid may go by itself.
Follow up: another CT in 2 months.
TB test is negative. I already feel better...
Sep-09-2005, Fri.
Labs. Creatinine=1.7, but all of a sudden my Hgb is 10.6.
Ferro-sulfate 2 x 325 mg and my Aranesp is increased to 150 mcg. Prinivil is also upped to 5 mg/day.
Sep-28-2004, Wed.
My Hgb is up to 11.1. Creatinine=1.8.
The physical therapy works miracles. My back pain is over after just one month of therapy.
Oct-10-2005, Mon.
Another CT of the lungs. What will the verdict be this time?
They know that no contrast should be used but they want me to drink some stuff. I refuse. Later my transplant clinic confirms that I should't drink any CT stuff.
Oct-14-2005, Fri.
Phone call from the transplant clinic. Whatever I have in the lungs is insignificant, but they see fluid around the heart. Echo tomorrow Sat and a cardiologist on Mon.
Double trouble. And I don't feel any symptom, pain, fever, or whatever.
Oct-17-2005, Mon.
Email form my pulmonary doctor: The fluid around the right lung is completely gone, but you still have fluid around the heart, which was present on the first CT... I didn't know that.
Somehow I think that I saved the day too. Since my previous CT I intentionally lost about 3 kg, which I believe was fluid. This extra fluid caused local swelling in my face once in a while, always in the morning. My conjecture is that during the night fluid goes up and may show up anywhere. I heard from other transplantees similar stories, where the extra fluid showed up in the fingers, eyelids, and lungs.
Now Cardiology. The cardiologist isn't sure why I am here. There is some fluid but below any significant level that should and can be pumped out.
He schedules another echo in 6 weeks and sends me home.
All's well that end's well, so far.
Oct-21-2005, Fri.
It seems that I cannot break loose from the clinic.
In the wee hours I feel swelling in my mouth and lips. In the morning it looks scary. Seems like an allergy.
ER. Weekdays are good for ER because no one is waiting. I see a doctor in no time. He glances at my med list and says it's an allergy to the Prinivil. They give me benadryl and 60 mg prednisone. He wants me to take prednisone for 5 more days. No way Jose! Been there already. At home I take benadryl and the swelling subsides. In the evening I feel the prednisone. The benadryl makes my tired but the prednisone keeps me awaken. I can't sleep a wink. In the morning the swelling is almost gone.
Dec-01-2005, Thu.
My Medicare is re-instated. It seems that they'll continue to pay 80% of the anti-rejection drugs. That's about $800 a month, thanks Uncle Sam.
I try to find information about the new Medicare drug coverage but nobody can give an answer. I hear that every provider has a different list of covered drugs. More research is required.
My health insurance payment is reduced, but still expensive.
A month ago I received a brochure from my insurer inviting me to join a Senior Plus program for about $40 a month.
BUT they say that their contract with Medicare is renewed annually, and there is no guarantee that it will be renewed in the future.
I sent them a letter (by snail-mail) with questions about what-if. No answer. Maybe they don't know?
I stay with my current program. A bird in the hand is worth 40 dollars in the bush.......
Dec-02-2005, Fri.
Echo one more time. The whole procedure takes about 20 minutes. The technician sticks the probe between my ribs. I see the screen but it seems like trees in the forest. I hear my heart pumping; it's quite different from the heart bit we all recognize.
Dec-05-2005, Mon.
Phone call from my cardiologist: some fluid can still be seen. Nothing serious. No follow-up is required.
So far so good.
Jan-12-2006, Thu.
My BP is a little on the rise. My neph wants it 120/70. She prescribes Cozaar, 12.5 mg a day.
Cozaar may cause similar allergies as Prinivil. Good to know.
As I take my first dose, at night I have difficulties urinating. Just a coincidence? Luckily, no problems during the day.
You take one drug against problem A and you get problems B, C, D, and E. Of course there are other drugs for those...
Jan-24-2006, Tue.
Occasionally I still have difficulties urinating. I see my urologist and he prescribes Flomax 0.4 mg.
That's a solution to problem B.
Jan-29-2006, Sun.
At night I have chest pain in lower-left ribs. Is that problem C?
The pain is up to 5 in a scale of 10. It feels like an ultra-sound probe is pressed against my ribs.
I consider waking up my wife and going to emergency but I don't.
Jan-31-2006, Tue.
My PCP sends me to X-ray.
Feb-01-2006, Wed.
Transplant clinic calls. They want me to do chest CT.
Feb-08-2006, Wed.
No chest pain since Sunday. Chest CT.
I decide to stop the Cozaar.
Feb-10-2006, Fri.
Dr. Adawi, Pulmonologist. I see the CT. Some fluid in the left lung. She wants to take a sample. This will be done in radiology.
Feb-17-2006, Fri. 12:00 pm
Fasting. No food after 7:00 am. No Aspirin, no alcohol. Bring a driver with you. You'll get some sedation. Expect a 5-hour stay.
Radiology. I tell them that I don't need any sedation. They want to insert an IV. I tell them that last time nothing was found, so maybe they can test me first, but they are sure that they'll find the fluid.
They plan to do another CT to locate the fluid and once they find it they'll do a local and start pumping... After that I should rest for the day.
The doc explains that in rare cases the lung may be punctured... and they'll send me home with a tube... very encouraging.
CT. I lay in an odd position. In and out, CT is over.
"I don't know whether it's good or bad", says the doc, "but no fluid was found." Déjà vu.
Feb-23-2006, Tue.
Nuclear radiology. I have a lung V/Q scan. This is a 2-part test. First they let me breathe some radioactive air and take 4 shots from all directions, then they inject a radioactive substance to the vein and take more shots. Then a conventional X-ray.
The whole procedure takes about an hour.
To learn more goto: WebMD, V/Q Scan
Mar-02-2006, Thu.
Dr. Adawi calls: All clear.
Until next time.
Mar-06-2006, Mon.
Kidney ultra sound. Nothing found.
Mar-13-2006, Mon.
The least expected things happen.
1:00 pm. I am sitting in front of my computer. I get up and walk one step. My right foot hits the carpet and I trip and find myself sitting on the floor with a twisted ankle. My right foot is somewhere behind me.
With both hands I turn it back to normal, as God intended. Mild pain. My wife is home but I don't think it is serious enough to call her. I sit for a moment and try to get up. I am right-handed and getting up on my left leg leaves me with a muscle ache for a few days. I can walk. The pain is 1-2 in a scale of 10. Now I tell my wife. I tell her that right now I don't think that I need any medical attention. We eat lunch, and I feel that the foot starts swelling.
3:00 pm. ER. The usual questions. The nurse sees me walking and takes her time filling the questionnaire. "Take off your shoe and sock". Wow! The ankle looks scary. Swollen with blue bruises.
X-ray. "You have a fracture". They give me a boot to hold everything in place and send me home. This marvel is made of plastic and rubber foam, and locked with Velcro straps. Much better than having a cast on my leg.
At night I take the boot off. Going to the bathroom at night is a problem.
Mar-17-2006, Fri.
Dr. Mandel. Orthopedist. X-ray. They call it incomplete fracture. 'Incomplete' has a negative connotation but not this time. If you must have a fracture never ask for a 'complete' one.
Doctor orders: Boot for 2 weeks. Night and day.
Mar-21-2006, Tue.
Dr. Adawi wants to rule out any infection in my lungs and sends me to flexible bronchoscopy.
Fasting. Bring a driver with you. I can't drive with the boot even if I wanted to.
9:30 am. We are there. I.V. Gown. No need to take off the boot.
The nurse squeezes some stuff into my nostrils, then let me breathe thru my mouth some numbing stuff.
The doctor explains the procedure. They will flush some saline inside the airways and collect it to see whether there is an infection or malignant tissues.
They tell me that I'll cough a lot.
They take me in. They inject some morphine in the IV. I am sleepy. I hear voices but I don't feel anything.
The camera is inserted thru the nose. I don't remember when they put it in and when they removed it.
I cough and spit it out. I hear a voice "Don't do that" Do what? spitting? or maybe I turned my head? Whatever it was, a few minutes later I do that again.
30 minutes and I am out. 30 more minutes and I am fully awaken. They give me orange juice and we leave.
To learn more goto: WebMD, Bronchoscopy
Mar-27-2006, Mon.
Orthopedics one more time. X-ray. Boot for 2 more weeks. I start the counting down.
Mar-29-2006, Wed.
Pulmonary. Test results: nothing was found.
Dr. Adawi is still worried and sends me to PET CT (Positron emission tomography). This test intends to detect malignant tissues. Cancerous cells consume more sugar, so during the test they inject radioactive sugar into the blood and scan for higher concentration.
For best results I have to eat a protein diet the day before.
To learn more goto: WebMD, PET Scan
Apr-07-2006, Fri.
8:30 am. Fasting. We are in the clinic. I was told to take one Xanax pill just before leaving home.
Radioactive sugar IV. Will I glow in the dark? Waiting an hour for the sugar to spread. CT. 30 minutes and I am out. After a full day of low carb diet it's time to drink a bottle of Coke.
In the evening Dr. Adawi calls. Inconclusive results. Nice! Now what? She has some more tests in mind. I think that I need a rest for a few months. The verdict is still pending.
Apr-10-2006, Mon.
Orthopedics. X-ray. They let me step bare foot on my right leg. I see the images. The bone seems back to normal but the doc says that kind of adhesive in the bone is still missing.
Boot stays. I can take it off at night. I can gradually put on the shoe at home. "Use the boot whenever you go out".
Another appointment in 4 weeks. "Bring your right shoe with you".
Apr-16-2006, Sun.
I put on my right shoe for an hour. I can walk easily but the foot is a little swollen.
Tomorrow it will be half a day.
Apr-23-2006, Sun.
The shoe fits... The right ankle is okay in the morning but swollen in the evening.
May-05-2006, Fri.
Orthopedics. Done with the boot.
During the week I left home twice for short trips without the boot. I can drive my car. I walk slowly and watch my step carefully, but my right leg feels like a wooden leg.....
May-19-2006, Fri.
Medicare prescription drug plan.
There are representative of various providers in pharmacies but no one can give a straight answer about anything and especially about coverage of Cellcept and Rapamune, and since Medicare covers 80% of their price we haven't done anything. A Humana rep told my wife that these drugs were covered.
2 weeks left to join. No wonder that only 2 millions out of 40 millions eligible have joined.
My wife begins another tour of pharmacies and another Humana rep even convinces her that we'll pay less.
I check on the internet. Most companies give very little info. Human has a detailed site with list of drugs and a calculator. I enter my drugs and it suggests the highest premium plan – $65.15 a month (the cheapest is $13.75).
I print out the list with prices based on the different plans, I check mail order vs. pharmacy, and it looks promising.
Currently my 20% co-pay for Rapamune/Cellcept is $180 a month and with Humana plan it would cost $90. If I use mail order I'd save extra 16%.
I join the plan online. The process is quick and simple.
May-23-2006, Tue.
The Rapamune/Cellcept require pre-authorization by my doctor. I get the phone number from Humana and email my txp coordinator. As simple as 1-2-3.
May-24-2006, Wed.
Email from my txp coordinator:
I spoke to the people at Humana, and was told that your Cellcept and Rapamune were covered under your Medicare Part B, and there is no coverage under Humana for these drugs.
Facts of life: They take your money with joy and provide the goods with tears.
My wife begins a 2-hour phone tour with Humana reps. 6 reps altogether.
Each one of them asks for my personal data. Each one of them is courteous but can't help and transfers her to another rep.
It's 7pm and the last one promises to call tomorrow.
It occurred to me that a few of them said that my coverage begins in June. Is that the key?
May-25-2006, Thu.
It is evening and no one from Humana has called.
Time for action. I send them a message with the story.
I selected the plan because it covered the meds I needed. If these drugs were not covered then I was misled.
Where is the catch?
May-26-2006, Fri.
Surprise, surprise. Early in the morning there is an answer.
But it doesn't tell me anything new.
Here is the punch line:
"I have looked up the drugs you have inquired about, but I am unable to check and see if they are covered under your plan until June 1, 2006."
Wasting no time I answered back:
I am baffled.
What do I have to do to ensure that I can order my drugs on Jun-01-2006?
Once more, a prompt answer.
"I understand that you are frustrated. Your benefits have already been assigned. However, our system does not allow me to access your actual records until the effective date."
So now it's clear. Always blame the computer.
Jun-01-2006, Thu.
Another message from Humana:
Our records do indicate that Rapamune and Cellcept are covered under the Medicare part B.
These drugs will not be covered under the Part D Prescription Plan.
Dear Humana,
I selected the Complete plan because it was recommended by your representative who checked my list of drugs and confirmed that all of them were covered, and your website also indicated that these drugs were covered and no exclusion was mentioned.
I believe that I was misled, and the problem can be solved if you switch me from the Complete plan (premium $65.15) to the Standard plan (premium $13.75).
Jun-05-2006, Mon.
Well, this time it took them 5 days to come up with an answer:
Thank you for writing to us. Please call our benefits line for your request.
Needless to say, we called and were turned down. No change in plan until Nov-15-2006.