15 Months and Still Counting !
You have already heard most of the story from Norm, so
I'd like to tell you a little about Hepatitis C and Portopulmonary Hypertension (PPH): about my feelings and what
keeps me going keep going day after day.
Hepatitis C is a virus that is transmitted by blood and affects the liver.
Although it is relatively hard to get, some stastics say that 1 in 50 Americans currently have the disease
and many do not know it! It often takes as long as 20-30 years for people to have symptoms.
It can be contracted by : medical professionals getting stuck with a contaminated needle, people sharing needles to use illegal
drugs, tattos with unsterile equipment, and unsanitary ear piercings. It can be spread through transfusions that
were given prior to 1990.Unlike the HIV virus which dies on contact with air, the hepatitis virus can live up to 2 days outside the body.It CANNOT
be spread by donating blood . I personally think everyone should be tested because with
early detection, available treatments can be very successful. If I were to give you any advice it would be to go to your doctor or local health department and have a test done. All that
is required is a simple blood test which may save your life.
It's a funny thing, I have been trying to write this page for weeks and when it
comes to putting my feelings on paper, I am totally lost !! Odd because Norm tells me my mouth never stops moving!
It is been 6 years since we began this part of our journey. I can tell you
that beneath a tough exterior was a very insecure woman.
I have always been a fighter and have been the first or the best at almost
anything I have tried to do.AT the age of 8, I won top honors at a state piano competition. At the age of 14 I was
the youngest person to make the Texas All State Band. By the time I was 16, I was earning a couple of hundred dollars
on weekends singing at a local country club and my senior year in high school I made the first of two record albums.
I made the highest grade on my nursing state board exams given in obstetrics. I
also recived my Alcohol and Drug counseling license. Generally, if there is something I really want, I will get it no matter
how much hard work it requires.
Please don't get me wrong. I've had my share (and more) of valleys too. I
made some really bad choices for some years that I have paid for over and over again. One of my choices even resulted in my
not being with my children during their growing up years. Because of another decision I made, I have not seen my parents but
one time in the past 13 years.
I regret these things terribly but I have learned from every one of them.
Mostly I have learned that after making amends, all I can do is to follow my beliefs, fight for what I believe in, and try
to live as God wants me to.
Never before have I ever been faced with something that has challenged
me more than this. This time, I am fighting for my life!
I really appreciate
when doctors tell me that they just don't have answers for some things.
Somewhere along the way I learned that with chronic, possibly terminal conditions
there are two things a person can do: Either learn to live with the disease or die from it.
I have chosen to live.
At this point
I guess I should tell you about my journey on the "road to transplant". When Dr. G first told me I needed a transplant,
I thought "yep, Let's go do it".
I had no idea all the things I had to go through before ever getting called
for a transplant. I also had no idea that in the US alone 7 people die each day waiting for some
sort of transplant.
I first tried to be listed for transplant at the University of Washington
in Seattle. I was turned down . I had tried so hard to do everything asked of me for over 9 years and, as you read,
I am not used to failing at anything. I was so heartbroken, that I just wanted to lie down and die. I talked
to Norm and decided that I wouldn't even try again. As usual he said it was up to me.
Why did I change my mind? On Mother's Day 2003, while our granddaughter was here,
I became so very ill that I was unable to sit up so the EMT's could get me on the stretcher. I couldn't eat or drink and noone
could stop the vomoting and diarrhea. I was semi-comatose for 48 hours. Norm was told by my
local GP to call the family because I wouldnt make it through the night. She also said that because I had been turned down
for a transplant that nature would just have to take its course. (We didn't know that all we had to do was call OHSU
and they could have helped). That was the night that I saw angels surrounding my bedside and smiling. I knew I would
be ok and sure enough I walked out of ICU 2 days after I woke up! This incident changed my mind FAST !!!
At the end of 2003, Dr Grunvald asked me to go with him to a program on hepatitis
C for doctors and nurses. He told me at the end of the day I would get to meet the keynote speaker.
I met Dr. Zaman that day. I was so ill that I slept through most of it and
was so confused that I hardly knew where I was much less who I was !. The
leading hepatologist at OHSU, I would have done anything for a minute of Dr. Zaman's time! The first thing
I did as I was shaking hands with him was to belch in his face. I remember him laughing as he said, "Well,
at least I know you have encephalopathy!" I wanted to be accepted into the liver transplant program at
OHSU so badly; almost more than a man dying of thirst wants water!
I cannot begin to tell you enough good things about Dr. Zaman. He is a SUPER
Hepatologist, a SUPER man, and a SUPER friend! I first saw him in March of 2004 at OHSU and found out I was supposed
to be evaluated for transplant that day; not just seen by him. He decided right then to care for me himself and get me walked
through the loops as much as he could. I was listed there for a transplant on Dec 28, 2004.
A lot of things happened during those 9 months. I had many many blood tests.
I felt as though I had met with a vampire ! I met with a Social worker, dietician, and priest to see if I was psychologically
able to meet the rigorous demands of liver transplant and also if I had a solid support group from Norm and a few others.
All of my records for the past years had to be gathered and evaluated. All my other organs were looked at, poked, prodded,
and tested. Heart, lungs, kidneys and some of the organs I didn't know I had! Sleep habits were evaluated as well as my weight
which was within program guidelines: (boy am I glad I lost over 100#'s and kept it off !).
They asked if I had smoked, taken drugs, or had a drink in the past 6 months.
They did extensive tests to support my honesty.
Dr. Zaman has coordinated my care with fine precision. Dr. Grunvald has
moved to Ca. and Dr. Atwood has taken his place as my doctor in Richland. She and all the doctors at OHSU treat
me with dignity and respect. I feel I have the finest doctors anywhere in the US right at my disposal.
Also I guess since I live 3 1/2 hrs away,every time I call, Dr.
Zaman is the one who usually calls me back after his work is done.
I have made many friends at OHSU. But one lady in particular keeps my
head of straight. Her name is Sara and she is my transplant coordinator. She is the one who tells me over (and over
sometimes) when each of my appointments are. Lately we have begun emailing each other so she can get me first hand info. She
makes me feel like I am her ONLY patient !!
Because of my continued shortness of breath, Dr. Z sent me to who I
believe is the very best pulmonary hypertension specialist in the North West.
Her name is Dr. Cathrine Markin and her assistant is Lyn Oberson. I love
both of these women as though they were a part of my family. I had experienced severe breathing problems for over
4 years and I was actually relieved to learn there was a name for this problem. Is
is called Portopulmonary Hypertension.
PPH is called the "Other high blood pressure". It refers to high blood
pressue in my lungs. I never smoked, or had any problems
with my breathing or my lungs, but by the time I was referred to her, I couldn't catch my breath. My hands, feet,
and mouth turned blue even trying to get to the bathroom and going out anywhere like dinner or to the mailbox was impossible
!
I had focused so many years and all of my energy on my liver disease that I didn't realize I actually have
2 conditions that possibly could kill me! These two people have babied me and brought me along. First I had a right heart
catherization done. In my case, it was probably brought on because my liver can't push enough blood through the enlarged,
diseased vessels (varicies) throughout my internal organs.
Starting in March 2005, I was put on 2 drugs, Viagra and Ventavis, but
experienced such bad effects that I had to be taken off them.
Because of the many deaths from due to PPH during and shortly after liver
transplant, there is a point where you are no longer able to be transplanted. By November 2005 my pressure had
risen to the EXACT point of cut off (35 MAP).
Dr. Markin had to find something to help me. Finally on November 14,
2005 the FDA approved a new continuous IV treatment for PPH. A hickman catheter was put into my chest and therapy
with Remodulin began on November 16th ! All evidence indicates that the drug is working. I can now walk all over
the mall and work out on a treadmill and other machines for 45 minutes !! What a change from a woman who could hardly
make it 10 feet to the bathroom!.
I know that everything I have gone through is worth it. This part of the journey
has shown me at age 53, my purpose in life. I spend hours each day teaching, sharing, and comforting people in all phases
of their own journey. I am very active on 2 web sites and speak with every one I come in contact with about the diseases.
I am so grateful for the opportunity to get another chance at life.
I don't feel that just because I NEED a liver I automatically should be given one. There are so few to go around and
it is an honor to be chosen to receive one. I will make the donor family very proud to have a part of their loved one live
through me.
It is by helping others that I continue to rise every day to fight
some more !
Right now I need to take the time to thank Norm for being here with me and encouraging
me every day even when he is often the one who needs encouraging himself. And of course Shannon, my home health provider
whom Norm told you about. I do not know what I would ever do without her. (Sounds like the Academy Awards
doesn't it !)
By working on the support group web sites I now have hundreds of friends.
Many of them are as close as my own family. We talk on the phone, exchange gifts, and several visit me regularly
in Portland when I am in the hospital. Some have even stayed with us on their way through town. What a blessing.
My life is so much richer than ever before. My faith in God is the
difference I think I have that others may not. When Norm is sleeping and I wake in the middle of the night, sometimes
I feel like I carry the weight of the world on my shoulders. Then I realize that I don't run the show. I am ALIVE and
I believe I stay alive by the grace of God. In the end God is the one who is in control and He is the
only one who knows how this story will end.
