I had sleeve gastrectomy on June 16, 2016. The whole surgery went well. But later that year I started getting pneumonia and it wouldn’t go away. After seeing a pulmonologist, I was directly admitted into the hospital where my surgeon ordered a barium swallow test. This test showed that I had a fistula that went from my stomach to my lung. So everything I ate or drank ended up in my lung.
After several procedures to try to correct the problem, the head surgeon of our hospital chain in my state decided that an open total gastrectomy was the only option left. So in March of 2017, they removed my entire stomach.
Things were going well. But then I noticed a lump on the left side of my belly button. It was along my belt line so it was causing pain. It turned out to be a hernia. Thankfully, my doctor did a hernia repair on it because when he opened me up, the muscles under the lower 2/3 of my 9″ scar from my open total gastrectomy were separating. This resulted in them having to use the largest piece of mesh they had. It took eleven incisions.
Now, I have been diagnosed with a siding hiatal hernia and it is causing aspiration pneumonia. You can see it here in this photo. The circled part is not supposed to be there.
My surgeon has basically washed his hands clean of me because my case is so difficult. But my pcp is doing everything possible to help me through this.
I saw a pulmonologist today. She can treat the pneumonia but not the aspiration. She is concerned there is just too much damage to my lung from having stomach acids in it. But, she is willing to work with me to treat the pneumonia.
Next week, I see a Gastroenterologist. My pcp made personal calls to GI specialists in our area to find one who would be willing to take on my case and found one, thankfully.
I’m feeling a little defeated at this point, but I don’t have any other choice but to keep on moving and trying to figure out how to survive with these complications. It’s been rough, but I can get through this with the love and support of my family.
Time hasn’t been good to me. I’ve seen loved ones die and I’ve seen people whither away. It makes me question my own mortality. With all of these problems, will my life span be affected by all of this? I don’t know. My pcp says that I can’t worry about that right now. We need to take this one step at a time. And today, I need to start yet another round of antibiotics for aspiration pneumonia. That’s all I need to focus on. What comes tomorrow will be dealt with then.