Sunday, January 29, 2012

It's just...complicated!

"Blue Lightning Jeep" and me on a summer day in 2010 when I had an NJ tube

"Gastro what? Oh, I have that. Everybody does. That's just reflux. Just take some Tums. Pseudo- HUH? Oh. Just avoid salad and you'll be fine. Salads makes me sick, too. I have IBS. Five organ transplants? Why did you need five organ transplants? Kidney? And what else?"

"No, no, no...!!! It's not that simple!"

Having one rare illness is frustrating enough, but when you have a number to deal with, it only adds to the amount of hair you pull out in a day...if you have any hair to begin with after meds, malnutrition, and stress. Trying to explain it all to medical personnel, even in some of the best hospitals is challenging enough, not to mention trying to explain it to your typical layperson.

I have suffered from a number of conditions for 18 years that have left me unable to eat, work, or function in any normal capacity. My life has pretty much been swallowed up by long medical terminology and complicated scenarios. As if figuring out how to treat one rare condition isn't difficult enough, getting doctors together on the same page for a number of conditions is like getting a Steelers fan to convert to a Ravens fan- it just doesn't happen!

In 1994 I was diagnosed with a condition known as gastroparesis, or GP. It literally means "paralyzed stomach." Gastro- Stomach. Paresis- Paralysis. I also suffer from Chronic Intestinal Pseudo-Obstruction, or CIP/CIPO. CIP literally means "false intestinal obstruction." Pseudo- false. Obstruction, well, doesn't that speak for itself? CIP is a condition in which the small bowel forms blockages/obstructions in the absence of a mechanical obstruction. Basically, when I eat, food gets stuck in my small bowel and while it doesn't actually obstruct the bowel, it blocks it off completely so that nothing can go through. Thus the term "pseudo-obstruction" means "false" obstruction because it acts like an actual bowel obstruction. In spite of how easy the terminology seems to me to understand, it's not to most people who are not surrounded by medical terminology and even medical personnel. It's even more complicated to treat!

These two conditions led to my need for a five organ transplant. No. Not FIVE organ transplants. ONE transplant of five different organs. And no, a kidney was not one of them...they do transplant other organs besides kidneys...

Picture of me which appeared in the Pittsburgh Post-Gazette in Dec 2005, three months before my transplant. Taken at Montefiore Hospital. 

On March 13, 2006 I was given the gift of life at the University of Pittsburgh Medical Center when I received a small bowel, stomach, pancreas, liver, and duodenum due to total gut failure. My entire GI tract had quit working, I was 62 pounds, and starving to death. I had been on TPN, a form of IV nutrition, for years and lost all my veins for central lines due to frequent sepsis. The TPN caused liver damage resulting in my need for a new liver.

After the transplant, I also developed a condition known as dumping syndrome. The pyloric sphincter was damaged during the transplant and that means that sometimes my food empties TOO fast from my stomach- quite the opposite of gastroparesis. So, not only am I juggling a number of rare conditions, I am dealing with conditions that are opposite of each other! The diets are complete opposites and I never know which one is going to act up that day, or even from one hour to the next! But it doesn't end there!

On top of the GI issues, I also have a rare heart condition known as long QT syndrome. Long QT is an electrical abnormality of the heart. Although genetic, this condition is triggered by low potassium and certain medications. Which medications? Any medication used to stimulate the GI tract to digest (motility medications) and most anti-nausea medications. The medication used to treat my dumping syndrome also has a warning that it can cause sudden cardiac death in people who have a long QT interval. Been there, done that on the motility medications. I don't recommend it. Aye, aye, aye! Plus, that medication also CAUSES gastroparesis. So, if I try to treat the dumping syndrome, I only make the gastroparesis worse AND I put myself at risk for heart complications.

As if that weren't enough, I also lose potassium at an alarming rate, even IV potassium. There is a possibility I have another rare genetic condition, a hypokalemic periodic paralysis, which causes my body to shift potassium from my bloodstream and into my muscles and causes drastic and sudden drops of potassium, even in IV form and when not exhibiting any loss through my GI tract or kidneys. Again, low potassium can trigger my long QT and send me into potentially fatal heart arrhythmia's. I am rare. I am very rare. Not only is this combination of problems rare, perhaps even non-existent in anyone but me, but not too many people have survived six episodes of cardiac arrest!

In addition to all of those, I juggle a number of other conditions which are the result of years of malnutrition, treatments, or caused by some rare, underlying condition yet to be discovered. Basically, I am a mystery. A conundrum. Unique. Complicated. Special. Oh, the number of terms that have been used to describe me over the years are are numerous as the pages in my medical records!

Just imagine trying to explain one of these to a physician on a trip to the ER, much less getting into all of them and how they interact and work against each other. Then imagine being half asleep and sick, tired, and trying to explain it all! One doctor thinks his or her treatment option is a must, while the other claims that it will aggravate something else and isn't an option. Then a third chimes in that neither will work well, and this other treatment is the only way to go. Finally, a fourth comes to the conclusion that nothing should be done. Just live with it. It has gotten to the point that my doctors ask me what to do now. I don't know. Just let me get some sleep. I'm tired of all these questions. It's just....complicated!

I am the founder and president of the Gastroparesis Patient Association for Cures and Treatments, Inc. G-PACT is a 501(c)(3) non-profit organization founded on August 23, 2001 to help fight gastroparesis and chronic intestinal pseudo-obstruction, collectively known as digestive tract paralysis or DTP. Check out our website at, like us on FB at, and follow us on Twitter at 4GPACT.

Thursday, January 12, 2012

Ups and Downs

Life is full of ups and downs, smiles and laughs, and tears and frowns! Some days are great and life seems grand, while others are tough, too much demand! It's hard to know what each day holds, every minute it changes as life unfolds.

I cherish the moments when life is up, and halfway full is my sippy cup! But during the down times it's hard to see, that maybe the next day is different for me.

It's hard to not be able to plan, but I really do try the best I can! I still have hope and that helps me cope, but I fear the unknown, as new problems I'm prone.

I still love life, in spite of the strife, but when times get rough, I don't feel tough. And the longer this goes, pain from head to toes, while sleeping so much, pain just to the touch, it's hard to feel, like this ever will, come to a good end, or just always descend.

I believe in my God, he can heal my bod. I do understand, He has my life planned. But sometimes I wonder, when everything's thunder, why He trusts me so much, with big plans and such?

I have grown through this, things I'd really miss, if I never learned, how would life have turned? But have I learned enough, about all this stuff? Is there still more to know, about sickness and woe?

I just have to pray, and then I can say, that although this does suck, it's not just bad luck. There's a lot to gain, and He keeps me sane. He's always there, and He really does care. He never promised a life of ease, and all my concerns He knows and sees.

I Peter 1:6-7:
6. So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while.

7. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

Wednesday, January 11, 2012

The im-PACT- it comes from you!

You know what was so cool for me today? I woke up at 3 AM this (Monday, Jan. 9) morning, groggy, but unable to go back to sleep. Naturally, I logged on to Facebook to make sure nothing world changing had happened since I had fallen asleep three hours earlier.

One of the first things I noticed was the post of an awareness video put together by teen GPer, Megan Kondilas. Megan is an administrator of our Gutsy Teen Lounge support group and has been very active in GP awareness and support since not long after her diagnosis. I immediately posted it on the main G-PACT YouTube page, my personal profile, and in all support groups. Although a number of awareness videos have been done in recent months by individuals sharing personal stories, this one captivated the faces of so many different people all in one and related a common story that we all share. I found it powerful, not only that a teen had put it together on her own time while not feeling well, but that so many people had sent in pictures to get involved in the project in order to increase awareness. The desperation and outcry for attention to our needs was clear.

I started to "like" all of them that were posted in my News Feed, but I think I ran out of energy before I hit them all! My News Feed is loaded with posts and re-posts of this video and people pleading with loved ones to watch it so they can better understand gastroparesis and the devastating effect it has on us by requiring feeding tubes and TPN in many cases, gastric stimulators, and frequent hospitalizations. But it wasn't a video of hopelessness either. It showed that we are still trying to live as normally as possible through images of us performing normal activities and hanging out in everyday environments outside of the hospital setting.

One thing has become increasingly clear to me over the past year especially. G-PACT patients have become a force that can no longer be ignored or blown off. We are passionate. Most of us have never met in person, but we are making an im-PACT across this country and even in other parts of the world. We love and support each other, no matter how far apart we may live. This year will bring about new videos, even more awareness, greater advocacy, new programs, fresh ideas, and potentially some new drugs and further research and funding into Digestive Tract Paralysis. We may have weak guts and weak bodies, but we don't have weak minds or weak spirits. We are here to FIGHT in 2012 harder than ever. Tears streamed down my face as I looked back over 11 years to where we were on August 23, 2001, the first day of official operations. We had hopes and dreams then. We discussed working together to help provide patients with coping mechanisms until a cure could be found, but the possibility of a cure at the time seemed hopeless. The years have been challenging and there have been moments when we have wanted to give up. There have been long stretches when it has seemed like all we have hit is brick walls. However, those hopes and dreams of the original founders have only grown recently as we have seen so many taking the initiative to fight now too. So many are picking up the sun rays with us to help "rays" awareness. As a result, we are starting to get the attention we deserve. TOGETHER we CAN and ARE making an im-PACT!

Keep your eyes open over the next few days as we post information on things that you can do to get involved. Everyone can do something! Whether it is as simple as sending in a picture for a video or the website, being a blogger on our blogspot page, or organizing a 5K for a National DTP Awareness Day, everyone can play a part in fighting these devastating conditions. Stay tuned! Progress is being made. You CAN help G-PACT make an im-PACT! We love our fans!

To view Megan's video, go to

Please pass it around!

Carissa Haston, on behalf of the G-PACT Team
I wish I could be there for you
and hold your hand to get through
And give you the cure
and a future more sure
take away all the pain
no more need for a cane
make you able to eat
and stand on your feet
no more crying or tears
only dreams and eased fears!

I too struggle much!
I long for a touch
sometimes all I need
is a soft word, indeed!
that you have me in mind
when I'm in a real bind
or just that you care
and you wanted to share
if there's nothing to say
let me know that you pray
and that's often enough
to help me stay tough

I want to give you dreams!
and lots of sun beams
help you stick to the fight
and say "it's all right"
But I really don't know
how long this will go
seems there's no end in sight
we're in a tough plight

But one thing I see
is the fight to be free
and to never give in
the desire to win!
So hold your head high
and coninue to try
to dance in the rain
in spite of the pain
hold on to the hope
it will help you cope!

Know I'll be there for you
I feel what you do
I'll help you endure
while we search for the cure
my heart often breaks
all the lives that this takes
but some battles we've won
soon the war will be gone
You just have to believe
soon we'll have a reprieve!

Carissa Haston, 2012
To all my friends who are fighting DTP on a daily basis
And my loved ones and friends who support me through my own battles
I love you all and thank you for being there and not giving up me!