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My name is Carissa Haston and I am the founder of the gastroparesis online support group, and co-founder of G-PACT. I was asked if I would share my story with you to provide some hope and encouragement as the year 2007 begins. As a result of multiple health problems, I had little hope of living beyond my 27th birthday. Two months ago I turned 29. I was dying of gastroparesis, pseudo-obstruction, and liver failure when God intervened and helped the best doctors in the world save my life. I hope that my story will bring some hope that you too may find a way to be cured of this horrible illness.
I was diagnosed with gastroparesis in
1994. I was unable to eat anything and lost down to 84 pounds when
finally my doctors put in a j-tube and a temporary gastric pacemaker
in 1996 as part of an experimental research study at the University
of Virginia. I also took domperidone, and a large range of other
meds to try to get it under control, but nothing worked. I was off
and on TPN as well. I struggled to get by for years on tube feedings
and eating what I could, but eventually my small bowel also began to
fail. I developed major complications as a result of poor nutrition
and therefore was started back on TPN on a long term basis.
Unfortunately, my body rejects foreign objects and no matter how
cautious I was in the care of my central lines, I began to develop
sepsis at least once a month. I was losing weight and strength
rapidly, and all of my veins became inaccessible as a result of so
many line changes. Basically, I was starving to death and had no way
of getting supplemental nutrition. My weight dropped to 68 pounds,
my potassium was always low, and I was frequently dehydrated. I
spent most of 2003-2004 in the hospital.
In November of 2004, my
gastroenterologist came to my hospital room and asked if I had
considered a small bowel transplant at the University of Pittsburgh
Medical Center. This is something we had briefly discussed in the
past. I told him I had thought about it, but was waiting until it
was absolutely necessary. He informed me that it was time...there
was nothing else he could do. I still had my j-tube, so he told me
to try to use that as much as I could in hopes that it woud maintain
me enough to get to Pittsburgh. Interventional radiology at Hershey
Medical Center had told him that I had no access veins left and they
would not attempt to put in another central line.
As soon as I got home, I contacted the
physicians at UPMC. Because of the seriousness of my situation, I
was scheduled to come for the transplant testing within two weeks.
When I arrived and saw the doctor on the first day, he looked at me
and said I needed to be hospitalized immediately and restarted on
TPN. Fortunately the Interventional Radiology team at UPMC found
some veins in my neck that they were able to access. I underwent two
weeks of testing and visits with various doctors to ensure I was
eligible and had no other major health concerns that would endanger
my life if I were to go through the transplant process. I was able
to return home in time for Christmas with my family. Unfortunately,
on December 31, 2004, I developed sepsis which forced my mom and me
to return to Pittsburgh immediately for treatment. That trip turned
into a very long term stay because the doctors in Pittsburgh decided
I needed to stay in the area until the transplant because I was too
sick to go home. Finally, on February 2, 2005 I was placed on the
transplant list for a multi-visceral transplant. I would receive
five new organs- small bowel, stomach, pancreas, duodenum, and
liver.
Although my doctors wanted to do me
immediately, organs were not becoming available. I was also too sick
much of the time to have survived the transplant process. Finally,
after six months of waiting, my doctors decided my best hope was to
remove my small bowel. It was determined that my frequent sepsis was
the result of bacteria and fungus in my small intestine building up
and crossing over into my bloodstream. By removing my small bowel,
they felt that my episodes of sepsis would decrease. They also
removed my gall bladder at the same time because it was so full of
sludge they could not even find it on the ultrasound. I came through
that operation very well and did begin to improve.
We all had hope that the transplant
would happen soon so that I would not get any weaker over time.
Unfortunately, that did not happen and in September of 2005 I
developed a very severe case of sepsis that resulted in a 2 week
stay in ICU on 4 liters of O2. My O2 stats had dropped into the 60's
on the main floor, and my fever was 105. The doctors were not sure I
would be able to survive that severe of an infection in my state of
health, but I'm a fighter and wouldn't give up. I came through that
episode, but it weakened me dramatically and I spent the next
several months in serious condition fighting to stay alive long
enough to have a chance at a transplant.
On March 13, 2006 a physician came into
my hospital room around midnight to tell me that they had received a
call that organs had become available! Eight hours later, I was in
the OR being given something only God can give - a new chance at
life. The 16 1/2 hour operation required removal of my stomach,
remaining portion of my small bowel, large bowel, duodenum, and
liver. My body was literally an empty cavity with no abdominal
organs in place for a few hours. My pancreas was not removed, but a
new one was implanted so I have two! I was given a new ileostomy
with a plan to reverse it over time. During the following eight
weeks in the hospital, I developed pancreatitis from an ERCP
(procedure to unblock a bile duct in my liver) and my white cell
count dropped dangerously low. Finally, on May 10, I was well enough
to return to the Residence Inn. I spent June and July in the
hospital with major side effects from medication and high fevers,
but at the end of July I was able to move back to Harrisburg. My
j-tube was pulled out in September and I have been eating on my own
since without major complications!
I have been going to Pittsburgh every
two weeks for biopsies and clinic. The biopsies are performed using
a scope through my stoma. It is interesting to watch them scope my
intestinal tract on a computer screen! I have had relatively few
complications since with the exception of thrush and some GI
bleeding. I still have some occasional nausea, diarrhea, and pain,
but I am able to eat anything I want. I was diagnosed with LPRD
(Laryngeopharyngeal Reflux Disease) in October which means that I
reflux into my larynx which results in coughing, runny nose, voice
loss, and difficulty breathing after eating. I have trouble
swallowing as well, and it puts me at high risk for aspiration
pneumonia. However, they recently started me on a new medication and
made some other changes to help.
I will be on medication for the rest of
my life to prevent rejection and boost my immune system. Currently I
am taking approximately 20 different medications including steroids
and prograf for anti-rejection, vitamins and minerals, anti-reflux
and anti-nausea meds, as well as some others. Immediately after the
transplant I was on fifty-seven different medications. Eventually, I
will be on a minimum of nine for life. Currently I take meds 8x a
day, a small price to pay for the ability to eat and to be alive.
I am so grateful to be alive and realize
the importance of living life to the fullest. My surgeon at UPMC,
Dr. Kareem Abu-Elmagd, did not think I would survive the surgery. He
was so scared to operate that his hands were shaking and he had to
stop and pray beforehand. I was 62 pounds at the time, and my blood
pressure was fluctuating dangerously. I didn't have much longer to
live. However, the organs were a perfect match for me, the surgeon
is the best in the world, and I came through the surgery with flying
colors. My life is completely different as a result. I am now able
to eat, attend church, and perform more normal activities. I am
enjoying my hobbies again which include video games, puzzles,
sudoku, e-mail, redecorating my bedroom, shopping, spending time
with my family (including two nieces and two nephews), driving my
Jeep Wrangler, and cooking! Although it will take a good year or two
to recover completely, and I still have many limitations, I am so
pleased to see improvement on a daily basis. I love every single day
and thank God daily that I have another day to live and enjoy life,
even if I'm having a bad day! This transplant was a miracle for me.
It was not only a miracle that I survived the 16 month wait when I
was in such serious condition, but that I even survived the
procedure, that IR was able to continue to find veins in my neck
long enough to carry me through until the transplant, and that my
recovery has been going so well. God definitely has a purpose for my
life to bring me through so much and carry me to this point.
On January 7, 2007 I will return to
Pittsburgh for approximately six weeks for one of the final
procedures in the transplant process. Dr. Kareem will begin weaning
my Prograf down to the lowest level possible without sending me into
rejection. He also plans to decrease my steroids. Once that process
is completed, he will perform an operation to reverse my ostomy and
I will be completely free of all tubes and bags for the first time
in 12 years! Although as a transplant recipient I will always be at
risk for complications and rejection, my recovery is so astounding,
and the organs such a perfect match, that it is not expected that I
will ever have any serious problems.
I have been given a gift that few people
are given, yet it is the best gift a person can receive. A loving
family I don't even know unselfishly gave me the gift of life during
the most tragic event of their lives-the loss of their child. As a
result of their gift, I am able to sit here at my laptop and share
my incredible story of recovery and hope...a hope that goes beyond
just living a longer life, but being able to lead a normal life in
the future. I've had the opportunity to enjoy my 29th birthday,
another Thanksgiving, Christmas with my family, and enter a new
year. This would not be possible without the love and dedication of
so many in my life from the physicians, nurses, my family, friends,
financial donors, and especially the family who so compassionately
gave an incredible gift to me during a time when they were suffering
so much loss.
I hope that by sharing my story you will
be encouraged that there is hope. Physicians are fighting
gastroparesis every day, and research is being performed. A
multi-visceral transplant is drastic and a last resort which few
people with gastroparesis, and only those with small bowel problems
as well, will ever need to go through. However, there is hope that
something will come along someday to cure this dreadful
disease. Eight years ago I had no hope of recovery. Two years ago I
had no hope of even living much longer. Then one day I walked into
Dr. Kareem's office. He hugged me and said confidently "I can fix
you. I promise." I knew that he was sincere and for the first time
in years I finally had hope of a better life. He fought so hard for
my life, and kept his promise to me. There is hope that you too will
someday walk into a doctor's office and hear the same words...we
have a cure, we can fix this now, you are going to lead a normal
life again, or you will never have to suffer from gastroparesis ever
again. Never give up. I almost did when I was at my worst, but I
knew that there was hope that I would be able to beat this, so I
kept fighting. Although it has been a long and difficult road to
reach the point that I am at, it was worth the wait and I'm so glad
I never gave up. Now I want to use my better health to serve all of
you once again. My absence from G-PACT and the group has been
difficult over the past few years, and I am happy to slowly be able
to start working on things again. It is my desire that through
G-PACT and the group you will be able to cope better with
gastroparesis, learn new things, meet others, and have some fun
until better treatments and/or a cure do come!
If you would like to read more about my battle with gastroparesis, pseudo-obstruction, and the transplant process from the time of diagnosis in 1994-present, it's available on my website at www.monkeygirl.atfreeweb.com. You can read "A Fight for my Life" for information through 1999, and "updates" for information on my life since. I hope that it will be an encouragement to you, that you will learn some new things, and maybe get a laugh here and there!
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