Original Post- Sat. May 26, 2012:

I love Lego's, naps, LCBC, naps, Jeeps, naps, the Steelers, naps, Troy Polamalu, naps, good friends and family, naps, G-PACT, naps, organ donors, naps, laughing until I hurt, naps, food I can't eat, naps, lime green, naps, funky socks, naps, 72 degree weather, naps, cheese, naps, taking funky self portraits, naps, Facebook, naps. iPhones, naps, video games, naps, good days, naps, getting things accomplished, naps, reading, naps, illustrating, naps, sunny days, naps, hats, naps, classic TV, naps, seeing hair in my armpits (hey, trust me, when chronically malnourished, that's a good thing...), naps, energetic days, naps, Pawn Stars, naps, lots of spoons, naps, online shopping and not going to stores, naps, traveling to conferences, naps. I realize some of these are oxymorons, but it doesn't mean I don't like them anyway!

I'm going to be spending a good deal of time posting things on here that may seem out of date. I post A LOT on Facebook, and I am working on getting all of my FB posts together on this blog where they will always be accessible in one location. So, please bear with me as I work on this and I will try to date everything so you know where they are coming from. Most are always relavent and timing doesn't matter, but some may seem out of order and I will try to make that clear. I would just like for my posts to be in one location and will always try to post here and on FB from now on to keep this blog more current, and to keep people who don't follow FB much informed on my innermost thoughts. I will not be posting my day to days here...only the most beneficial thoughts I always want to keep. 

Being ill is a full-time job

Last Friday was one of those days I needed an on-call aide. I had two errands I had to run. I woke up with a migraine, muscles not moving well, my head was really foggy, and I was too tired to be safe driving! One errand could potentially have waited, but as long as one couldn't I felt like I might as well do the other too. I had to go to HMC to manually pick up my Fentanyl prescription because I was running out Friday and couldn't go all weekend without pain meds. I had to be back by four to start my TPN and I had to get my other fluids going before I left.

Being chronically ill is a lot more work than people think. People think we enjoy laying around sleeping or doing other stuff all day, getting paid to not work (I work my butt off, just don't paid), but don't realize that everything we do takes so much energy and it's A LOT of work to be sick. It's hard to even make it to the bathroom sometimes and getting dressed often takes several phases with a lot of rest in between the shirt and the pants. It takes so much work to do the simplest things. There's meds to keep up with, IV fluids to hook up to, TPN to run every single night, doctors appointments, dealing with the whole medical system, insurance issues, phone calls all the time to docs, pharmacies, home health, paperwork to sign and mail back in. Most of the time we are even too tired to pick up the phone and make these calls. Some days I can barely talk. We don't just lay around doing nothing. It's A LOT of work to try to be as healthy as possible and everything takes at least twice as much energy...usually even more. Getting a shower is an overwhelming thought most days and all I want to do when done is take a nap! We work hard and on top of that, we have to fight a lot of tough emotions, fears, frustrations, and challenges that come with this.

We are not lazy. We work really hard, it's just in a different way than most people. But we work JUST as hard, or even harder. We don't get a vacation either. It's a 24/7/365 job. We can't call in sick either. I have to hook up to my fluids and TPN every single day no matter how I feel or how much energy it takes. I have to take my meds all day long regardless of how nauseous I may be or if I am in the middle of a nap. There is no break, there is no choice.

When God says "no" He has another plan

I had a five organ transplant in 2006- small bowel, pancreas, liver, duodenum, and stomach due to conditions that paralyze the GI tract- gastroparesis and chronic intestinal pseudo-obstruction. When I arrived at the transplant center for initial evaluation, I was 68 pounds and starving to death. The doctors at the University of Pittsburgh said I was so late in arriving and should have been done a long time ago. They weren't sure I would survive long enough for the transplant. Typically, the wait for these transplants is about 3-6 months. I was too sick a lot of times when they got a call for organs for me that my surgeon couldn't do it. I also got three or four false alarms where I was called, told they had organs, went in to the hospital for all the pre-op prep, and then last minute was told there was something that didn't quite match and sent back home. That was always devastating because I had my hopes built up, and then they were dashed as I continued to get sicker and sicker and my time was running out.

In the initial transplant testing, my liver didn't look perfect, but they thought that it would reverse itself once I had the new organs. The surgeon told me if the organs came with a liver, he would do it, if not, we weren't going to wait for that. At about the one year wait mark, I got a call and was told the organs were an absolute perfect match. They hadn't seen a better match before. I was within minutes of being wheeled into the OR when the surgeons came down and said that the organs did not come with a liver, and the way my anatomy was they would not be able to hook up the new small bowel to my original liver. I was devastated because I had already waited a year, most of my friends had been transplanted, I was 62 pounds by then, and I was running out of time. I cried and shut myself in the room we were staying in all weekend. I was depressed and angry. I thought the organs would never come in time and I would not receive my gift of life.

It was another three-four months before I got my next call. I was in the hospital at the time with perhaps a week left of life. Mentally, I had already "checked out" because of the extreme malnutrition and poor state of health. I don't rememeber the last few weeks pre-transplant. The docs came up and told me that these organs were even better than the others and an absolute perfect match. I was prepped all night for the surgery and taken down to the OR. This one was a go! When I woke up in the TICU (transplant ICU) a couple days later, I was informed that I had received all five organs, including the liver.

What is amazing and a God given gift, is that the docs said that although my testing showed my liver wasn't in horrendous shape and they expected it to reverse and heal after the transplant, once they got in there and actually SAW my liver, it was twice it's normal size and full of fatty deposits. They told me if the organs had not come with a liver and they hadn't transplanted it, that I would soon have been placed on a waiting list for a liver. I would have had to go through a separate transplant for a liver. This would have increased my risk of rejection of all organs because it's much better for all five organs to come from one donor. Plus, my liver may have failed before I could get another one.

I look back to that and realize God had said "no" to the organs that looked so promising a few months before because He knew I needed a liver too. It was worth the extra 3-4 month wait because it spared me from so many other complications and I am so much healthier as a result of getting all organs from one donor!

One of my favorite quotes is "When god shuts a door, he opens a window." God taught me a lot through that experience. While several calls were no go's and I was in fear for my life, He had me right where He wanted me and was in total control of my situation. In spite of my anger over the long wait, He continued to show me His love and did not give up on me even though I had given up on Him.

This is long, but it has been a crazy day and a lot has happened. I'm just feeling overwhelmed. I want to thank everyone who regularly prays for me and those who care about me. So many are sharing this journey with me, and although few can relate to my physical battle and the complexity of transplant issues mixed in with other issues, you are still putting your arms around me, holding my hand, or helping me wipe away the tears that come when sometimes I just don't know how much more I can take. So many have let me know that you are not bothered by me sharing my reality so openly and have told me that you want me to be honest and to be Carissa. I appreciate everyone who wants all of me...who wants me when I am happy, fun-loving, and joking around, but who also want me when I am frustrated, scared, or struggling. Thank you for not making me feel like I have to wear a mask, but that I can be open and honest and you will be with me no matter where I am at that particular moment. You are doing what you can to help ease my burden by showing your love to me and encouraging me to keep going when sometimes I just feel like I can't handle any more. You are true, 100% genuine, high quality friends and I hope that I am the same kind of friend to you...someone you feel you can come to at any stage in your journey and know that I want all of you too...

Today has been a really stressful day trying to figure out what to do with my health situation. They have all been calling me (my home infusion company and Pittsburgh) all morning with concerns. It's just a really long and complicated story. But if you follow me at all, you know that one reason why I have been slow to call Pittsburgh recently is because it is hard for me to handle it when the best intestinal transplant team in the world asks ME what to do because they just don't know.

Today I started crying on the phone when, after I told my transplant coordinator that I am still so sick, not tolerating tube feeds, my electrolytes are so unstable, and my energy is so low, she said "I just don't know what they (Costa or Kareem) can do." I heard exactly what I feared I would hear...I just didn't expect to hear it today before I even got up there...

Anyway, she is working on arranging a visit in April where I will see either Costa or Kareem. She also wants their new transplant surgeon to sit in on my consult to see if maybe he will have a fresh idea that could help me that Costa and Kareem may not have thought about. They'll do a biopsy to look for rejection since it's been a while. I am also due for my annual bone density scan and appointment with my osteoporosis doctor. So, I will be there at least a few days to get all of that in. I am scheduled to see genetic at Children's Hospital of Pittsburgh again in June to continue to look into genetic conditions, but I can't wait that long to see transplant and deal with the GI and nutritional issues.

On top of that I told her that, in my opinion, I think it is time to have a pair of fresh eyes from a GI doctor who knows more about GP, CIP, DS, and the newly suspected achalasia than my doctor at HMC does to take a look at the situation and see if he has any fresh insight. She agreed that it is at least an option and is setting me up with a GI doctor there whom everyone loves. Although he deals primarily with Crohn's patients, she feels like he would also be fairly knowledgeable about all of my issues too and if I wanted to see him, she'd set something up. I don't know if he will have any new ideas, but I just want to pursue any options I can before I decide that going back on TPN really is the only way I have left to go.

My potassium has been running low for my last three blood draws, so my home infusion company is working on contacting my PCP to see if I need more potassium in my daily IV infusions. Unfortunately, this would mean an additional two hours hooked up to my IV pump (from 12 to 14 hours) on top of being hooked up to my tube feeds 24 hours a day. It's ok in the sense that I am home in bed 14 hours a day anyway so it won't affect me in terms of limiting what I already do outside of my home (I am not strong enough to carry around two pumps and two bags of formula/fluids outside of the home. The biggest issue is that due to the long period of time the potassium will infuse, I will need an additional dose of IV Benadryl halfway through in order to prevent a reaction and I am already so tired from the one dose I get every day that I am not interested in adding another dose to that.

I guess the GOOD news of the day is I did hear from the Office of Independent Living Opportunities in York and they are coming out on Friday afternoon to take the next steps towards me getting an aid to help me out at home. This step is the one where we will discuss my needs, determine how many hours of help I will need per week, and what types of services will be most beneficial. This is a step in the right direction and hopefully I will finally have that assistance very soon. This will help me out a lot by reducing my feelings that I am a burden on my parents. They have NEVER EVER EVER made me feel that way and would do anything for me I know, but I also know that my limitations do add extra work for them and the aid will help me feel like I am less burdensome on them which will reduce my stress and some of the frustrations I have with not being able to care for myself more. They are also happy that this person will be able to help me out and that it will relieve them of some things for them too. I am also hopeful that she will be able to help me stay more organized with G-PACT and be able to be more efficient there. My parents will probably feel safer when traveling knowing that someone is coming in several times a week to help me with basic needs like changing my bed, doing my laundry, helping me shower, keeping my place more sterile, run some errands if I am too low on energy to drive, etc. So in all this mess of the day, that is one encouraging thing.

I am mentally, physically, and emotionally exhausted so I am going to rest now and try to get some sleep. Thank you so much for all the prayers. I know so many have been lifting me up because in spite of it all, I really am in pretty good spirits most of the time and still fighting to maintain as much activity as possible and not let this take over my life.

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 www.g-pact.org, like us on FB at www.facebook.com/GPACT, and follow us on Twitter at 4GPACT.

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.