NothingButLove
Distinguished member
- Joined
- Dec 25, 2016
- Messages
- 106
- Reason
- Lost a loved one
- Diagnosis
- 11/2016
- Country
- US
- State
- CA
- City
- Anaheim
In about 6 hours, my wife will have a RIG placed at UCI's radiology suite. What a crazy two months. It all started on August 1st. Here's a brief run down:
I'm hoping the operation goes well without any complications. I want to slow down for the next couple of weeks. Wish us luck...
Rob
- FVC down to 44% from 87% four months earlier. Doctor prescribes Trilogy. (Thank you Laurie for the settings!)
- Wife takes vacation with her sister. First time she's away from me since October 9th, 2016 when it was suggested she has ALS. (https://goo.gl/photos/aFYowJ6vFx8UopQR9)
- Doctor suggests feeding tube will do more harm than good and suggests I call hospice. Nuclear meltdown ensues.
- ALS forums save the day. (https://www.alsforums.com/forum/cur...-please-i-need-serious-advice.html#post418151)
- While my wife is still away, I get a little crazy with too much time to think. I read a particularly depressing post on ALS Forums (https://www.alsforums.com/forum/current-caregivers-cals/39281-caregiving-five-years.html) and call the National Suicide Prevention Hotline. (for depression, not suicide)
- My wife and I go to New York. It was her first time. She got to see her favorite player of all time win the US Open. (https://photos.app.goo.gl/TKmPSbiXyLKIP9Cs2)
- I had the most awesome Craigslist experience in the history of the universe. I'll post about it later in the Stories of Hope sub board when I get a chance.
- Our clinic's medical assistance drags her feet putting in referrals for a home health nurse to teach feeding tube maintenance, a dietitian and formula. Completely stresses me out...
- I go to the hospital with my blood pressure at 197/120.
I'm hoping the operation goes well without any complications. I want to slow down for the next couple of weeks. Wish us luck...
Rob