Before the chop chop chop info

I'm scheduled to have surgery at 6 AM tomorrow. I am supposed to be at the hospital by 5 AM. UGH. Good thing I get to just go back to sleep! Of course, that's after a zillion questions that I can't remember the answers to that early in the morning and have already been asked 18 x...even just today!

My blood counts were really low today so they sent me to 7W for a unit and have put four more on reserve for tomorrow. I knew I was tired and weak, but figured it was all related to the craziness I brought on myself the past few weeks with DTP Awareness Week for G-PACT. They also did an EKG because of my history of torsades (cardiac arrest).

DTP Awareness Week was a great success, especially considering it's the first time we did it! We celebrated our nine year anniversary on August 23! Nine tough years of fighting, discouraging a lot of times, but encouraging a lot of times too...especially recently as we have been making a bit more progress and have had some pretty major accomplishments. We are only getting positive feedback from awareness week. We pulled off five successful webinars, a lot of awareness activities, a balloon release awareness event which was really cool as patients nationwide released balloons into the air with notes attached about DTP and where to go for more info. It's our hope that these will be found by people and they will get in touch with us saying they learned more. If nothing else, it shows that even though we are scattered throughout the nation, we can all stand in solidarity in fighting this through awareness.

We also held a raffle for a messenger bag and a tote bag, two different contests for people to win a "Gastroparesis Gourmet" cookbook published by G-PACT, people wrote their congresspeople, changed profile pics on Facebook, posted status updates and information to spread the word. Our Facebook fan page grew by well over 100 people in just a week! It was an incredible week and went much better than any of us could have ever imaged. People are so desperate and passionate and really want to do whatever they can to fight. A lot of people participated, and the impact was great as a number of people told me that they had friends who had never heard of DTP, and now they have joined our page to learn more about it. Donations and awareness band purchases have increased and people are continuing the efforts we started last week. One person wrote to tell me her congressperson even responded to her letter about the desire to help people with gastroparesis. We have hope!

Anyway, tomorrow I am going in for major surgery. It's pretty risky since I am immuno-suppressed and have SSSOOO many other health complications that factor in to the challenges and surgery recovery. I'm really stressed out and nervous about it, but I know it's time and the right thing to do. I have had an NJ tube for several months. This is a tube that was inserted into my nose in June and goes into my jejunum for tube feedings. I have been trying for over a year to balance my GP and dumping syndrome and have been unsuccessful. I was in really bad shape and barely surviving when finally my doctors at Hershey Med took notice and admitted me to the hospital and started me on NJ feedings. I feel better on the NJ feedings because they pass the pyloric sphincter in my stomach so I no longer experiencing severe dumping symptoms as long as I don't eat. Passing up the stomach completely also controls most GP symptoms. I do have some small bowel issues with some of my CIP coming back, but they are manageable at this point.

I hope to be able to consult with the metabolic doctors from Childrens Hospital who also deal with mitochondrial diseases while I am here to see if we can get to the root cause. There are a few things I can do to slow down the progression if we can figure it out. Kareem knows there is something very odd going on. The outward signs are being more and more apparent all the time. I'm struggling with mobility, short-term paralysis (sometimes full body paralysis for a few minutes, other times partial paralysis of hands and feet), more difficulty swallowing, which indicates some paralysis of my esophagus and difficulty urinating which I had before the transplant as well. My hands are different colors, they tingle and and I can't tell the difference between hot and cold sometimes, my feet turn blue, and other weird things. Because my mobility has gotten worse, I fall pretty frequently now and may end up back on my walker before long. Fortunately, no injuries yet...but it's getting risky as my osteoporosis has also worsened. He's supportive of my pursuit of mitochondrial disease because he is searching for why several of his CIP patients re-develop it after transplant. It would connect my factor V leiden (blood clotting problem), long QT (heart condition), weird response to low blood pressure (jerking like seizures), potassium dropping in spite of lots of IV potassium and supplements, and all kinds of things docs have never been able to explain or connect.

Before Kareem places the j-tube tomorrow, he has to make sure it can actually be done. He will be doing exploratory surgery first to check out my entire GI tract and look for anything that might be causing my problems. Suspecting some of them are related to adhesions (scar tissue from so many surgeries) he will do a lot of cleanup work and clear those out. If everything looks ok at that point, he will put in the tube. In addition to all of this, he may decide to do a full thickness muscle biopsy to see if I am in chronic rejection. If this is the case, he will have to remove a portion of my small bowel and it would require resection. Hopefully, he will be able to tell just by looking and not have to take that step. I am hopeful that by clearing up adhesions, it will improve some of my symptoms so perhaps I can eat a bit better without things getting stuck or getting obstructed at times. I don't want to be on this tube forever. I just hope I don't wake up to find out it couldn't even be placed! But, I am dealing with the best surgeon in the entire world...and I'm not biased, because multi-visceral transplants are considered to be the most difficult surgeries being performed today and he is the pioneer and does the majority in the world. He has saved so many lives in situations where any other doctor would have given up or not known what to do. I'm in excellent hands.

Please pray as I go through this, not only for me, but for my mom and for strength as she helps me get around for a while and helps me out. Pray for Kareem as he does it. He has back problems that make doing surgeries difficult for him. But, he doesn't want anyone else to touch me, even Dr. Costa who did the last very major surgery on me a couple of years ago. That's an indication of how big of a deal this could be, but I'm so glad he's doing it. Pray for strength for me. I'm pretty weak so recovery may be difficult. Plus, I'm frustrated because I feel like I'm going backwards healthwise. This isn't the kind of surgery you want because it doesn't improve much down the road. I'll feel better nutritionally and won't have my tube clogged up all the time, but it doesn't fix anything. I still won't be able to eat, unless the adhesion cleanup helps. But it won't take care of the dumping. Matbe he'll find something else while in there that he can actually fix.

I don't know what to expect. It's impossible to know how long recovery will be. It depends what he finds when he gets in there. I may or may not be in the TICU (transplant ICU) for a few days, depending how extensive it is and how I do. I hate the TICU! It's the most miserable experience, so I hope to go straight to 12 North. That's about all I know right now. I'll be in surgery before most of you wake up (or before you even read this) as long as a transplant doesn't come in for another patient overnight. My parents will keep this blog updated until I am back on and able to post myself.

Reminder to not send me live flowers or plants. I don't expect anything, but I don't want anybody to put out money for something I am not allowed to have as a transplant patient. They are dangerous for me and will get snagged at the nurses station.

Facebook friends- please remember that I don't want to receive notifications, gifts, hugs, or anything from games or applications while I am gone. It's just too stressful to try to catch up or go through and delete everything after being gone for a while. I appreciate messages to my wall and responses to status updates though. That's ok. I hope DTPers will continue to connect to each other through my wall.

People who follow G-PACT, please contact beenerc@g-pact.org with questions and she will direct you to the appropriate team member to assist you with your questions and concerns.

Thanks for your support, and I will post again as soon as I am able.