My story begins in 1994. Being a heavy equipment operator-truck driver, I had to have a commercial drivers licensee (CDL) that had to be renewed every four years. Part of the requirement was a health card that has to be renewed every two years which meant a physical exam. After my urine test the nurse said there was blood in it and I should follow up with my own doctor. Since it was on my way home I stopped there to make an appointment and was taken in right away for my first prostate exam.
Since then, the word got out that I was easy and now every one with
white clothes and a rubber glove has their way with me. Its nice to know they all care so much!! ouch.This was on September 24th.
I had a lot of tests and blood work and on October 10th of 94 my new
health care doctor told me my liver was shot and I should quit drinking beer. I gave up my beer and just went on with my life,
I was given no warnings about the other things that are also bad for the liver and kept eating lots of salted sunflower seeds, a staple
here for people who work out in the sun all day, along with all the
other things that I was not supposed to be eating, I guess he forgot to tell me!

June 30, 1995

The temperature was 100 at 6:00am when work started, and I had the worst case of heart burn I ever had. I climbed into my truck and decided it would be a good day to take a vacation day. At home I can work at my own speed and go into the air conditioned house and cool off as needed. After working for a while I started to get dizzy and went in to lay down thinking I had the beginning of heat stroke. I was awakened by a women’s voice calling my name and got up to see who it was, after a few steps I realized that there was a fog in the house that was hard to see through and I was still very dizzy. I got a phone call from my wife and told her what was happening. She told me to call 911 but I could not see the numbers so she rushed home and called. By the time the medics arrived I was having a conversation with my parents, they both died in the early 70s. I heard the medics say no pulse, they started an IV and gave me oxygen and said I had a faint heart beat. I awoke in the emergency room throwing up blood. A vein in my esophagus burst and it took 4 pints of blood before it clotted. My stomach and intestine were full of blood and I had Peritonitis. That did not help matters any. I spent four days in the ICU, three days in recovery and two weeks at home with three IVs a day. I went back to work the first week of September after a lot of early morning walks to beat the heat. I felt better than ever!

February 11th, 1996

I vomited blood again. My wife drove me to the emergency room
and they replaced the lost blood. This time it clotted right away.
I spent three days in ICU and two more in recovery. I went back to work on March 2nd. At this point my doctors were talking about
how much time I had left. When my wife asked about the possibility of a liver transplant they were evasive and cold. We decided that we should go for a second opinion.

May 31, 1996

I vomited blood again, and almost lost consciousness. My wife called 911 and they came to save my life again. They brought me to the emergency room and after a few hours of not being able to stop the bleeding they transferred me to another hospital.

June 1, 1996

I was still bleeding and they had to give me five units of blood.
My new Gastrologist ordered an emergency Tips procedure to bypass my liver and relieve the pressure. I had given permission to do the procedure a few hours before, but as they started to prepare me some where back in my blood starved brain, I decided it was a plot to put an electronic device in my body and I fought them. I
had to be restrained by a lot of the staff. They tied my arms and legs
to the operating table, but my yelling could be heard all over the
hospital. I still get embarrassed when I go back there for tests.

June 2, 1996

I was still on the ventilator and still hog tied so I would not rip out
the tubes. By evening they untied me and I was able to write notes to
my family. The first thing I wrote was I need air! A few hours later
they removed the ventilator.

June 3, 1996

I was taken out of ICU.

June 5, 1996

I was still in pain and still having trouble talking and breathing.
They took me down for a chest X-ray.

June 6, 1996

They found out I had a collapsed lung and started me on breathing
treatments.

June 8, 1996

Removed the catheter from my neck, I no longer looked like frankenstien.

June 9, 1996

I was released from the hospital good as new.

June 26, 1996

You can’t keep a good man down, back to work.

September 18, 1996

I was sent to the University Medical Center in Tucson, AZ. for an
evaluation. It included a few hours of medical tests and a three hour
psychological exam.

December 13, 1996

I was put on an invisible list, with an unknown number, but I got my
pager! Merry Christmas to me!

December 29, 1996

I started feeling sick and had a friend drive me to the emergency room.
I had a slow leak in a vein but they could not find where or why.

December 30, 1996

An Ultra Sound showed the tips was still OK. Next they tried a new angle and scooped my colon, it was fine too.

December 31, 1996

I was taken to the hospital that performed the Tips Procedure and they did another Ultra Sound. It showed the shunt was blocked and they did an Angio plasty twice to clear it. Happy New Year!

January 2, 1997

Every thing back to normal, released and returned home. Back to work in mid January.

February 14, 1997

Its my 16th wedding anniversary and the day I was Medically retired from my job of 16.5 years.

May 19, 1997

Today I had all my teeth pulled to eliminate any risk of infection.
With little or no immune system the risk was too high, in my mouth any way.

May 22, 1997

It was decided to start doing Ultra Sounds every 3 months starting
today.

May 30, 1997

The Ultra Sound showed a partial blockage. I went to the hospital
and had another Angio Plasty. I recovered in the hallway for an hour and went home.

July 11, 1997

Six month checkup by the transplant team. They said my tests all looked good, I looked good and I felt real good too.

September 17,1997

Ultra Sound

September 22, 1997

Another Angio plasty, 3 hours in a room, including dinner with
double fudge chocolate cake. The Doctor knows best!

October 10, 1997

It is now three years to the day since I was diagnosed with Cirrhosis of the liver. I did not write this to scare any one. Everyone is different. My intention is to show what can happen,
and to offer to talk to anyone that has a question or just needs someone to talk to. I believe that laughter IS the best medicine,
and if nothing else I’ll tell you A joke. Find out if there is a liver
support group close to you. I have been going to two different groups
for over a year now. Once you get over your fear you have won half the battle! I also have two poems on my poem page about organ donors, if any one would like to add them to their page feel free to do so.

We all know what its like to WAIT!

Its what you do in that time that makes the difference!!!

UPDATE MARCH 26, 1998

It seems a few people have taken an interest in "My Story", and are curious about my progress. I haven’t added to it, because nothing much of interest has happened since October. I will add what has happened since then and maybe add a few thoughts. ( If I remember).

December 12, 1997

Time again for my Ultra Sound, everything went well and I
went home somewhat untouched. The garlic must be working.

December 19, 1997

I had my six-month checkup by my transplant team today
and I’m still in pretty good shape. I like these checkups. At least I
know this way that they have not forgotten that I am sitting at home waiting for a phone call or a page from them.

I found out that one of my blood counts was way off in my
last two tests and since it did not change after waiting six months,
they would have to give me an ERCP. They said I was in no danger from it and I could wait till after the holidays for the procedure.

January 1, 1998

Another year has come and gone. A year I should not have
had. A year that I owe to the dedicated men and women of the Apache Junction fire medics. I didn’t get any names or remember any faces, but I know they are all very kind, caring, Professionals, and, yes, I will buy a couple tickets for the dance this year. Thank you my friends!!!!!

March 5, 1998

Today I had my first ERCP. Unlike the Angioplasty, an
ERCP doesn’t go into your jugular vein, it goes down your throat. After they got me lined up right on the table I fell asleep and didn’t wake up till it was over. Darn it, missed another one!!

I did read about it, though. They put a tube down your
throat to insert the camera and dye. They injected the dye into my bile duct and watched it for a while and found out my bile duct is still doing its job. I don’t know yet if there will be a follow up on that or not, but no news is good news, unless of course you are waiting for a transplant.

That brings us back to today. When I last saw my transplant Doctor, he said I was in real good shape and might have to wait another six to twelve more months. The way I see it, its all time spent by researchers testing new anti-rejection medicines.

I got excited about a year ago when I heard about a new
anti-rejection medicine that would be ready in five years. It’s only
four now.

At the beginning I said (if I remember). I do remember
right now, but that is not always the case. When a liver starts to fail,
it no longer can process Ammonia from the system. Ammonia causes confusion and short-term memory loss. There are medications to help rid the body of Ammonia. Another big help is to learn which foods don’t produce a lot of Ammonia. Animal Protein is responsible for much of the Ammonia produced in our bodies and has been known to put liver patients into a coma.

QUIT ADDING SALT to your food!!! Salt alone can cause
liver damage. I tried to go salt-free in the beginning and it
is impossible to find food without some salt in it, and real hard to find
something you can eat and still smile!!

There is also a chance of dehydration if you don’t get some salt in your system. My best advice is to ask your doctor to set you up with a dietitian.

I have a diet that I follow that is easy to live with. I
can still eat most things except processed meats, things packed in brine, pickles, olives, etc. and salted snacks, chips, nuts, etc. The main thing is knowing protein amounts per meal, and don’t add salt.

I have my next ultra-sound on March 30th and a follow-up
on March 31st. Everyone knows me now, so going in for tests is
more like going to visit friends.

Most people waiting for a transplant don’t have to wait
as long as I have,but it does happen. I started walking after my first
bleeding episode and try to walk whenever I have the time. I work in my garden, pull weeds in the yard, and do whatever I can to keep active. A twenty-minute walk a day is better than sitting and worrying about the future.

Learn how to breathe again. When your time comes for a
transplant, your lungs must be strong. If you let your muscles
deteriorate, it will add a lot of time to your recovery, and if your lungs are too weak, they will not do the transplant!!!

NO MATTER WHAT YOU BELIEVE IN, BELIEVE IN YOURSELF!!

THE COUNTDOWN 10-3-98

A week from today it will be four years since I was diagnosed with cirrhosis of the liver. In less than two months it will be two years I have been on the liver transplant list.
Many people have asked me why it has taken so long.
I heard that tough little guys like myself don’t die very often and that makes finding a good size match for my liver a bit of a chore. I think the person was pulling my leg.

To the best of my knowledge the real reason is the University Medical Center in Tucson had a program in place that brought people in to the transplant system sooner than most do to try to make sure the person to be transplanted is still in good enough health to be able to survive the
transplant.

Other than my bleeding episodes, some short term memory loss, and not being able to lift anything heavy, I have been living a pretty normal life. I don’t walk far any more, I have enough to do around the property to keep busy and get lots of exercise.

I am not sure if the system is still in place now that the government is taking over the distribution of organs for transplant.
KEEP THE GOVERNMENT OUT OF THE DOCTORS OFFICE!
Since I wrote last I have had two more angio plastys, lots of blood work and most important of all, another birthday. Most people my age no longer want to talk about their birthdays or their age. ME, I’ll take all I can get, The older the better. I was even thinking of asking for donor birthdays but I realized that I would soon die of TMB = Too Many
Birthdays……LOL

October 1, 1998

After my last ultra sound showed the flow through my shunt had slowed down I was called in for another veinagram which always leads to the phrase," We are already here we may as well do an angio plasty" The doctors determined that the metal shunt had just been rodded out for
the last time. Next time it happens they will have to do another tips procedure or surgically replace the shunt. What ever they end up doing will add a couple more hours to my transplant time. This is where the exercise and deep breathing will play a big part.

I don’t know if I mentioned that I am one of the lucky ones that does not have hepatitis. I have friends that do and I am becoming a minority at the support group meetings. I know there are differences in the treatments and in "My Story" I talk only of my experiences. Hep-C is reaching epidemic levels with no reduction in sight and ultimately a liver transplant is not a cure but a way to extend your life while waiting for a cure.

I don’t know if it is the same all over but in my neck of the woods Hep-C people don’t want to talk about transplants until they need one. With transplantation being the only hope for them until a cure is found I would think they would want to be a little more involved in organ donor awareness. The organ shortage now is overwhelming, What will it be
like when this wave of Hep-C patients all need a transplant at the same time?

Organ Donor Awareness should be the most important project in the world. Thousands of good healthy organs are buried every day because no one took the time to talk to them, make them aware how much good a person
can do, even in death.

If the government wants to be involved in organ distribution it could start by educating the people on this subject.

Maybe the old brain washing method would work but just seeing a family’s daily life while waiting for an organ transplant would move a lot of people to at least give it some thought. Let the world see the families highs and lows. their love for one another and the pain of loosing a family member because people did not know the truths about organ donation or how little time and effort it takes to become a donor.

Before I got sick I was an organ donor but I never really gave it much thought till it happened to me. None the less I figured it was my last chance to be a hero to at least one person and their family. Now I am just one of thousands that are waiting for their hero.

In one of my earlier pages I mentioned that " the garlic must be doing the trick." I hope no one started eating garlic because of that. Garlic is a natural way to thin your blood. If you are waiting for a transplant the last thing you want to do is have thin blood. There are many things we eat that can thin our blood and we should avoid them at all cost.
After all the trials and tribulations of waiting for a transplant you don’t want to die because you just pigged out on garlic bread and they can not get your blood to clot.

If I have some how confused you in any way, feel free to e-mail me and I will make myself more clear to you. I have been out of work for a year and a half so I do have time to answer e-mail.

October 10, 1998

My wife and I met with my transplant surgeon yesterday and he was very pleased with the way I have been taking care of myself and my eating habits except for the bowl of Schwan’s Ice Cream I eat every night. I’m going to have to eat less of it or walk a lot more. Looks like I’m walking again.

He said as long as I don’t bleed again, I’ll be fine for another six months. Now I go every other month for blood work and an ultra sound.
The ultra sound is not just for the blood flow now but to also watch for cancer. If the blood flow starts to slow down again he is going to correct the shunt surgically. He did not rule out a transplant but being a common blood type is not always a good thing. Knowing that, I made a
reservation for January 11th. I grew up in a home that the house number was 111 and soon after I was placed on the transplant list I started seeing the number every where I looked. I’m not superstitious but I am becoming strange!!!! And don’t forget;

THROW AWAY YOUR SALT SHAKERS!!!!!

PEACE!!!

DALE

Dale France Leeb
Please send all comments to djleeb@uswest.net