| | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Kim,
It all depends on his Sp02 numbers (blood oxygen saturation). If he is below 90%, he will require oxygen. When the pneumonia was clogging up my lungs, my Sp02 got down to 85%. After they got the pneumonia under control, and my lungs cleared out a bit, my Sp02 got back to 95-98%. Walking should help improve those numbers, at least it did for me.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | 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
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Ed,
Are you doing any of the swallowing techniques to minimize aspiration? Have you been hospitalized for fevers?
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I started using the iSwallow app about 18 months ago. I figured if I couldn't do one of the exercises it must be because of weak or atrophied muscles. The SLP just gave me two, hoping it would help the epiglottis lift properly and one to strengthen the front of the neck. I pretty much do the Mendelsohn often some stretching.
I have not been hospitalized with pneumonia since around 2003. I started intense breathing therapy about 2 years ago and nebulize about 4 times a day when the pneumonia gets bad. I alternate with a weak saline solution and N-Acetylcysteine. It clears out a lot of the gunk in the lungs which immediately improves oxygen levels and ability to breathe.
In January I agreed to let my family doctor X-Ray my chest to confirm the pneumonia more for his benefit. He confirmed the pneumonia but informed me I have a lot of air around my lungs from significant blockage like seen with advanced stage COPD.
Many of the swallowing techniques for helping aspiration pneumonia are only temporary strategies and don't really "fix" muscle issues. With epiglottis issues I found a very interesting exercise through a voice coach. It helps except when extreme cold fats move through.
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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