 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | My O2 sat was mid 80's but exercise kicked that up and even when it dips to 92% I can instantly get it up to 99-100. The key is exercise. I went from unable to walk to biking 25 miles twice a week and walking a couple of miles almost every day.
My FVC and MIP prevented me from getting a PEG even. I managed to get my FVC back from near 50% to 85% which out me back in the 30 year old range. I doubled my MIP which drastically helped with lung gas exchange. One of the tricky things with oxygen is the buildup of CO2 that is forced to the bottom of the lungs. If the pulmonoloigist doesn't understand the neuromuscular side of breathing, some things they suggest can make it worse. If they work with ALS patients, they understand what not to do.
My other problem is managing the buildup of lung and aerodigestive secretions. Just small amounts of mucus in the airway shuts down the body's ability to breathe. The ongoing pneumonia seems manageable for now.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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