Hi all!
Been dropping by, thought I'd join in.
My story (short version) male, in my late 50's. As a teen I had non-Hodgkins lymphoma, it was aggressively and successfully treated. In my late 30's I started to have some gastrointestinal problems, kind of like irritable bowel syndrome, unpleasant but manageable. Occasionally I'd have bouts of vomiting, about 8 or so times that'd land me in the emergency room, usually 3 -4 days of rehydration and back home.
About a year ago I had a persistent sore throat and was diagnosed with cancer on the left tonsil, not too advanced. Treatment was to be 21 days radiation and 3 hits of chemo. One week into the treatment I was vomiting and couldn't keep down food or liquid. Went to ER. They thought it might be small bowel obstruction and admitted me. A scan showed a possible blood clout in leg, so they gave me a bag of heparin. Turns out what I had was a bleeding stomach ulcer, and the heparin caused me to bleed out and drown on my blood. Was coded and place on life support.
A few weeks later they removed the ventilator and gave me a swallow test, I aspirated on the barium and started to drown again. For some reason they didn't have me on a blood sat monitor so they couldn't tell I was suffocating. Fortunately my wife kept telling them something was wrong, and I was coded and incubated, again.
A few weeks later they went to drain some fluid around a lung, but nicked and collapsed the lung, back on the ventilator. And a g-tube, and a tracheotomy.
After about 2 months I was finally out of ICU for good, but the emergency incubations paralyzed a vocal chord and left me with Dysphagia.
I was moved to an acute care facility to wean me off the trach, deal with the swallow, speech, and general rehab. It took 6 months to get to walk and swallow again.
During most of that time the cancer treatment was on hold, when it did resume after about 6 months they couldn't do the chemo because my body couldn't take it. So 4 weeks of radiation (which included 90 minutes of ambulance daily).
Was finally able to go home about 4 months ago.
Currently having 3 days a week of phys rehab, 1 or 2 days of speech and/or voice rehab, a day or two of jaw therapy to deal with the trismus and a weekly visit to a dentist for light therapy on the radiation burned hole in my soft pallet.
Biggest challenge (beside not getting too depressed) is eating. Although my taste has returned, and the back of the mouth isn't that painful anymore, the tongue has become extremely painful, I eat by nibbling like a rat due to trismus, chewing is a pain, there's lack of saliva, and the swallow is weak so bits of food get caught in the throat. I'm a mess when I eat.
But on the bright side my wife has been a champ throughout the whole ordeal, my last PET scan was clean, and at this point almost everything is slowly improving.
Some things will never get back normal, my voice, jaw opening, saliva and swallow, but the pain should subside some, and hopefully I can eat enough to yank the g-tube at some point, although that might take another year or so.
If there's one thing I wish my doctors had told me it would be to get a Therabyte right away. even before radiation started. That may have helped to limit the trismus.
