I know that I’ve been gone a long time. My posts are less frequent as time goes on, but there’s a reason.
7 years ago I was diagnosed with stage II thyroid cancer. That was the first time I beat death when my body was fighting against me.
We caught it early and I got the surgery and treatment right away, but life without a thyroid has been harder than I could have ever imagined. I’m tired most of the time and just don’t have the energy to do all of my daily life things plus keep up with blogging.
The second time I beat death is recent, but started four year ago. Just two weeks before we left Japan in 2017 I had a nasty fall down the stains during heavy rain. I got some minor whiplash and thought that was it. Only it wasn’t.
Within days I started getting this watery feeling in my throat that was constant and never went away. It was suspected that I was experiencing water brash and dysphagia caused by my fall, but I was so close to leaving the country that I was advised to bring it up when we got back stateside and established care with my new doctor.
The symptoms got worse. I started to feel what I called “the bubble” in my esophagus that made it hard to lie down, exercise, and eat.
I did establish care in the states and went through the referral process until I finally got to meet a surgeon. Then from there I had to do countless labs and studies, but they found the problem. I had a zenker’s diverticulum in my esophagus; a pouch that had formed in the tissue that is more commonly found in the elderly community.
Keep my fall in mind. In comes into play later.
I told the surgeon “thanks, but I’ll wait. I’m too busy for this little thing to slow me down.” Three years pass and the symptoms got worse. More tests were ordered and the diverticulum had grown, so I finally decided to have the surgeon in February 2021.
During the procedure they discovered that I had an old case of histoplasmosis and my tissue was riddled with calcified remnants of the fungal infection resulting in some areas of my tissue being stretched very thin, like a spider web. The fall I had sustained caused so much force trauma to that area that it physically pulled the tissue to the side, resulting in the diverticulum.
I got some serious antibiotics to treat the infection as a precaution and went home to start my post-surgery liquid diet.
By mid-march I was starting to aspirate when trying to drink, only I didn’t know that was what was happening.
My surgeon was amazing and had given me his cell phone number so I could text and stay in contact if I had any questions. I casually mentioned what was happening and he asked me to come in right away.
More studies. I had a fistula in my esophagus and was admitted immediately for surgery. They placed a stent in my esophagus and I went on my way.
I was back at work and going on with my life with my new temporary liquid diet. I was coughing a lot, but thought it was normal for my surgery.
On April 8 I woke up in the middle of the night with a weird taste in my mouth after a mid-sleep cough. I made it to the bathroom, turned on the light, and started coughing up bright red blood all over the sink and the mirror.
My husband called 911 as I came in and out of consciousness. I have a few broken memories of the rest of that night, but I woke up 2 weeks later in the ICU after being on life support with a feeding tube, a chest drain, and several other IV lines. I had 2 blood transfusions and multiple surgeries.
I died that night on the OR table for 5 minute and 48 seconds, but my surgeon was able to bring me back to life.
The stent had worn through my esophagus and had cut into my aorta. The only reason I was able to make it to the ER was because the stent had put just enough pressure on my aorta that it was keeping me from bleeding out entirely.
When I woke up after 2 weeks I couldn’t walk, talk, eat, drink, or go to the bathroom on my own- and I couldn’t for months afterwards. I had lots of new hardware and was missing some things, too. They had to take out my entire right latissimus muscle to repair the damage.
I later found out that my surgeon had only seen this happen 5 times in his long career, and that I was the only one who had survived.
I stayed in the ICU for a month before being transferred to the inpatient floor. I was in so much pain, but was looking forward to things staring to get better. I was able to try to eat a little bit of food and was so excited for my mashed carrots. Right away an eagle eyed nurse noticed that the food I had eaten was showing up in my chest tube. I had another fistula.
I was rushed to another larger trauma hospital and that’s the last thing I remember for a little while.
I had another surgery and they found a fistula in my airway. I got a stent there as well and was strictly npo (nothing by mouth) while I healed.
This was May at this point and during covid, so I wasn’t able to see my husband at this new hospital due to their policies. That was so hard, but at least I had my phone and we could talk. I was there a week before I was finally released to go home.
I still had the feeding tube, chest tube, nightly iv antibiotics and lots of new scars.
I spent the rest of the summer recovering at home with several more ER visits along the way. I had some major problems with my gj feeding tube. One issue was that the balloon was blocking my stomach and causing me to throw up so much and so frequently that I was vomiting blood. Due to severe anxiety I also developed cyclical vomiting around medication time and that didn’t help my situation in the slightest.
Another ER trip found that I was so dehydrated that I needed twice the fluids as the normal dehydration patient. With some adjustments to my tube feed regimen and water intake in the feeding tube bag I was able to ride out the rest of the summer with no more ER visits, so that was a huge relief.
In the end I had around 8 surgeries and procedures this year and was finally able to get the feeding tube out in early September.
I still can’t raise my arm very high and am in pretty regular pain from my new lat-less shoulder. I start physical therapy soon, so I’m really hoping I can learn what my new limitations are.
I know that I’ll never be able to do some of the things I used to, but I’m alive and I’m beyond thankfl to be here. I wouldn’t be without my surgical team, my amazing nurses, and my phenomenal husband who has been there every step of the way.
Life is short. Life is fragile. We have to make the most of what we have.
angela schnabel 