January 2016. my husband and I drove to Kansas City in a horrible ice storm the night before surgery and checked into a hotel across the street from St Luke’s Hospital on the plaza. I had already had over 50 surgeries at this point BUT all of them were laparoscopic and I was freaking out even more knowing that this may be an “open” surgery.
Well, it was laparoscopic which felt like a blessing but only 3 days later I was taken back to surgery for an anastomotic leak as well as the remaining 10% had already migrated back into my chest cavity. They were NOT able to repair the hole in diaphragm and were hopeful that with the partial gastrectomy and roux en y reconstruction that it would stay in my abdominal cavity.
I went home after about a week in the hospital and it was ROUGH!!!! Learning to eat again and starting from liquids only was terrible. The feeling of something being stuck in your chest and having dry heaves with nothing but foam coming out. Eating something two or three times thinking it was a “safe” option to eat, and eat it again and spend hours sitting on the bathroom floor retching, or hanging over the side of the bed into my trusty trash can. I have never vomited and heaved so much in my life and really wondered if everything was ok…but I kept being reassured I just had to adjust to my “new” normal.
Adjusting…I have thrown up on the side of the interstate in Louisiana, in Florida, in a restaurant in Oahu and everywhere in between. Weight was melting off and that seemed to be the only benefit that I was getting from the surgery at this point. I went back to work after 6 weeks for a few days and fortunately I worked from home and networked into my job. I still could barely handle working, even from home.
My asthma was flaring up and by this time I also had been diagnosed as stage 2 COPD and what I thought was just and exacerbation turned into pneumonia and I was back in the hospital in Hutchinson. I had been there several days and woke up in the middle of the night with severe pain.
I called my nurse and she took my vitals and said everything looked fine to her…..I could not even sit up straight. I called her in again and she snottily told me it wasn’t time for pain medication. I told her I didn’t want pain medication I thought something was WRONG!!!! She did nothing. I sat there crying and and went into my hospital room bathroom and dry heaved for almost and hour and finally vomited. I did get a little bit of relief from that. I called the nurse back to my room and told her what had happened and my growing concerns that something was wrong and tried to reminder that it had barely been 3 months since I had lost most of my stomach. NOTHING……laid in pain all night long. These are the kind of situations that make you question yourself at the time. No one to take you seriously and your body is telling you there is 100% something wrong. You start to wonder if maybe you are just crazy, maybe you are a hypochondriac…it’s not a good place to be.
Fortunately, my dr did rounds in the morning and I told him about my nightmarish night and the fact that I was still having severe pain. He told me he would be right back…seriously, is he going to ignore me also??? Nope. I could hear him yelling at my nurse from my corner room for not contacting him during the night due to my worsening condition and pain. On top of that, he was ON CALL!
He ordered a stat ct scan and surgical and gastro consult. I had a partial bowel obstruction. I am taboo to most surgeons. Too much scar tissue. Complex anatomy. Crappy lungs. High risk. I was informed that I was going to be shipped back to KC. I went by ambulance…3 1/2 hours. It was not a good trip.
Dale beat me to KC and we met the surgeon as soon as I arrived and signed consent for surgery. Our pastor happened to be in KC that day and was able to pray with us before surgery. I awoke from surgery in the same room that I occupied in January with another damn nasal gastric (NG) tube down my nose. I cannot express fully enough my hatred of the NG tube.
There was a band of scar tissue that had obstructed my bowel and was repaired in surgery and yet again the remainder of my stomach was back in my chest cavity. For whatever reason, my surgeon in KC was not comfortable sewing my stomach to abdominal wall to scar into place or use a g tube (feeding tube through abdomen) to hold my stomach in place until it had “scarred” back into abdomen.
So I was off work more and warned that my FMLA was almost up. I had exhausted my vacation and sick leave and was on short term disability through my employment. I again tried to go back to work and again ended up back in the hospital and was terminated from my job the day after my FMLA expired. Yes, this is legal.
Trying so hard to be positive, it had been a little over 4 months and my hope that this surgery was going to “fix” me was pretty much gone. When I did manage to go out, all I heard was you look great. Although meant as a compliment, I was kinda wishing for my fat ass back. Totally irrational…..but I felt like crap every day.
Fired, no way I can work and still sick. FUCK!!!!!! I applied for social security disability and had the best HR manager that completed all of my long term disability and COBRA paperwork for me and made sure that I was as protected as I could be and that all of my benefits from my now past employer were in place and would stay in place. A blessing to this day!
More pain and back to my pcp, another CT scan. My pcp told me that he felt that I had to go to Mayo or Cleveland Clinic as there was no way my stomach was going to stay in my abdomen and we had to find a way to repair the giant hole in my diaphragm. Scheduled to go May 4th and 5th and my mom went with me to Mayo Clinic in Rochester, MN. Almost a 10 hour trip one way.