I have completed my pre-op requirements for the transplant

Aug 08, 2014

I wanted to give you all an update on our last trip to Cleveland Clinic. I had a few more unpleasant tests/procedures to complete before they could review it all and present me to the transplant team at the clinic. If you have never been down this road before (first trip & hopefully last for me), I wanted to share the process so I can educate others and offer support. This type of transplant... Stomach, intestine, and Pancreas...is one of the rarest. My surgeon at the clinic, Dr. Kareem Abu-Elmagd, has pioneered this transplant. He started in the Pittsburg area, got the program established there and then decided to take his skill, knowledge, and team to the Cleveland clinic to make this option available to a wider group of people, and I am so thankful for this team. This is my only shot at a better quality of life and extend my life. I had completed a majority of my pre-ops when I was there in April for a month as an outpt.  I still had a handful of not so pleasant things to do, but we decided to wait until I could come back in July and bring my hubby and our 2 kids with. There were a few things that my hubby had to be there for that were related to transplant education, social work, and most importantly to meet Dr. Kareem, and it was very important for Dr. Kareem to meet the whole family, especially our kids. It's still all very scary, but the kids and Marty felt better after they spoke with Dr. Kareem. The doctor asked each one of them how they felt, did they have questions, and most importantly if they felt that I should go ahead with a transplant...they didn't hesitate, we had done our homework and checked his stats, they all said yes, that we should do this surgery. They are aware of the risks of this surgery, but they want their mom back and they know that an 18 hour surgery of this type is scary, and the fact that I'll be in ICU on a breathing tube for a couple days and it will be scary to see but when you weigh the risk vs benefit, benefit wins. While I was there I met with the transplant coordinator for our transplant education, met with social worker to go over his info, they drew 41 tubes of blood and took a urine sample ( I'll post a pic of the tubes before & after, the RN who accessed my port suggested the pictures. He said that he's been working in the cancer center for. 10 years, and that even though they just recently started taking over the port draws for transplant that 41 tubes still broke a record for him. He's a sweetheart, one of the many great nurses at the clinic), they had to move my power port from the right of my chest to the left because the skin over the right side of my port became necrotic, the hole would not close anymore because I lost too much weight.  I also had open back surgery to remove the spinal cord stimulator. (This was my 3rd one that we tried for abdominal pain, but it wasn't helping and it was actually a hindrance for me to be listed for transplant). This was my 6th back surgery related to the stimulators and the most painful one, I had a lot of scar tissue so just like the last back surgery they had to remove another piece of vertebrae in order to be able to clean through the scar tissue to extract the equipment. I spent about 4 days in the hospital. I also had an MRI of my head once the metal was removed because my head CT showed a Chiari malformation, the MRI made the doctor worry less about it, he said it's nothing to worry about and won't stop my transplant. I had 2 colonoscopies and an upper endoscopy, the first colonoscopy had to be aborted because even though I did my part of the prep, the gastroparesis from my original surgeon damaging/cutting my vagus nerve (Dr. Amir Heydari out of Centegra) has wrecked my small/large intestines so badly that my intestines were not cleaned out enough. The sedation didn't work so well either , so I was pretty much awake and aware and started sobbing because I had just reached my breaking point, they went ahead with the upper endoscopy and I was fighting the tube and gagging so badly that they were able to finish, but I felt like I was swallowing glass for the next few days. So , they still needed a colonoscopy, so I'll spare you guys any extreme details but I wasn't going to have to do it again, so made my own concoction that I knew would not leave anything to chance. Due to the timing of all these different tests and most of them required a fasting or a prep, I went an entire week without eating. I finished all the testing, including meeting with a psychiatrist (anyone in line for a transplant has to be cleared with a psychiatrist), and I passed with flying colors, I'm still not crazy, even though my original surgeon wrote that in my chart without my knowledge. He couldn't figure out what was wrong with me, so he wrote in my chart that it was all in my head. I knew I wasn't crazy, but that comment in your chart follows you forever. The clinic's transplant team meets each Thursday to present potential transplants.  The decisions have to be unanimous. I didn't think they would present me that quickly, especially since all my test results were not back yet. Everyone on the team said yes to transplant, only the GI said no for the moment because he has never taken care of me before and did not have time to review all of the records of my failed j-tube feedings, which were an epic fail. I still have nightmares of those months of them trying different formulas, different rates...all with very painful results. The tube feeds were making all of my symptoms worse, the pain, bloating, and nausea. The last ditch effort was this pre-digested formula that smelled so bad and was being kicked back out by my intestines, through the tube itself and then around the tube. I also had bile leaking out which is pretty much straight acid burning my skin around the j-tube site. I finally convinced my surgeon at the time, Dr. Kroh, that the tube feeds were not working he decided that wexwouldcjust try the tube for medications, some were already liquid and I would put them in and flush with water and then watch them slowly ooze back out, they just didn't want to absorb. I ended up with extremely red, burned skin at the j-tube site from the bile and then an infection, so after over 6 months of this Dr. Kroh finally agreed that we tried everything possible with the tube and he had one of his residents remove the j-tube, there's a saline filled balloon that hold the tube in and the resident forgot to deflate it and basically ripped the j-tube out. As you can imagine when my transplant coordinator asked me if I was willing to attempt j-tube feedings again I freaked out. I'm a really good sport, but I told Natashia that there was no way I could do that again. So now we are waiting for the GI doctor on their team to review that part of my chart so he can feel ready to say yes, it makes me very nervous. The same GI doc also took me off my TPN (IV nutrition) to see if I can eat enough on my own to sustain my nutrients/calories, I've already lost about 8 pounds and my labs are out of wack, hopefully whatever point they are trying to make they get to quickly before my body really starts to fall apart. My nutrition has been so compromised over the years that I can sustain for awhile at bad levels and then everything just shuts down. I've already had some scary low blood sugar episodes, and I'm tired all the time. I just had an iron infusion and a B12 shot, I'm doing those weekly and my hemoglobin still can't get higher than 9.25, I normally have a hemoglobin around 8, normal is between 12-15. So, we are in a holding pattern on the medical front. I've been feeling really sick the last couple days, terrible intestinal cramping, and nausea, and I'm really frustrated that I can't do even the small things I used to because of the back surgery. Wow, this was really an Eyore themed update, it's not like me and I don't like it. 

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