Jman37
New member
- Joined
- May 10, 2022
- Messages
- 7
- Reason
- PALS
- Diagnosis
- 01/2009
- Country
- US
- State
- GA
- City
- Atlanta
I have had ALS since 2009, and I am at the point of considering a trache and have a few questions. I have had a slow progressing umn dominant disease phentotype, however, I have been struggling with breathing problems for the last five years. I have weak but working arms, barely any bulbar issues, but my fvc is around 15 percent. My diaphragm isn't working much at all.I have been using a trilogy with niv for five years or so. I am now on it 24 hours a day, and I'm still struggling to breathe the last few months and it has been adjusted over and over again. I am barely holding adequate blood gases, co2 elevated, and sp02 on room air around 92-93percent. I have expressed this concern to several pulmonologist and even Emory ALS Clinic.
I want a planned trache as NIV is not adequately supporting my breathing anymore. Every doctor refuses planned trache until I go into respiratory failure, and I do not want to wait for this to occur. Is this normal? I believe I'm getting bad medical.advice, because one pulmo.even said I'm too weak for a invasive ventilation. I have studied the subject and read zero muscle is needed for invasive ventilation. What should I do, I can't get anyone to give me planned trache, and I'm not breathing adequately with low oxygen and raised CO2 levels. I have alot of brain fog in the mornings.
I have avoided clinics since diagnosis as to me they don't do much but monitor decline. Recently, went to Emory ALS C, and they didn't do s thing. I am tired of these neuros and pulmonologist. Anyone have any suggestions. I have planned to trache for years and I am not getting the care I need. Thanks, Jax new to forum not new to ALS.
I want a planned trache as NIV is not adequately supporting my breathing anymore. Every doctor refuses planned trache until I go into respiratory failure, and I do not want to wait for this to occur. Is this normal? I believe I'm getting bad medical.advice, because one pulmo.even said I'm too weak for a invasive ventilation. I have studied the subject and read zero muscle is needed for invasive ventilation. What should I do, I can't get anyone to give me planned trache, and I'm not breathing adequately with low oxygen and raised CO2 levels. I have alot of brain fog in the mornings.
I have avoided clinics since diagnosis as to me they don't do much but monitor decline. Recently, went to Emory ALS C, and they didn't do s thing. I am tired of these neuros and pulmonologist. Anyone have any suggestions. I have planned to trache for years and I am not getting the care I need. Thanks, Jax new to forum not new to ALS.
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