- Status
starente15
Senior member
- Joined
- Oct 27, 2014
- Messages
- 809
- Reason
- Lost a loved one
- Diagnosis
- 10/2017
- Country
- US
- State
- NJ
- City
- Northern
Hi Pete - I'm glad to hear you're doing better. Even though I haven't been on the boards, I still think about you and everyone else here.
Christine
Christine
tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
The medecine keeps me going each day but the elephant on my chest gets heavier and heavier. typing is painful as my finger dont work and my voice is to weak for text to speach. trying to get all i can done for my family
Narrowminded
Extremely helpful member
- Joined
- Apr 30, 2016
- Messages
- 2,830
- Reason
- Lost a loved one
- Diagnosis
- 07/2007
- Country
- US
- State
- PA
- City
- Pittsburgh
Pete, hugs from afar. You are always in my thoughts.
Sue
Sue
WendyWooG
Senior member
- Joined
- Jan 10, 2016
- Messages
- 519
- Reason
- PALS
- Diagnosis
- 07/2016
- Country
- Uk
- State
- Hertfordshire
- City
- Stevenage
Sending big hugs.
I so know how you feel, I wake at night with that horrible feeling I am trying to keep calm. The doctor prescribed lorazepam which helps, we found out the hard way that I can't be off the bipap for more than a few minutes. I pass out then stop breathing. The hospital gave me a spare machine I'm now also using eyegaze which is fantastic.
I don't know what my fvc is and don't want to really, I am just concentrating on hanging on and looking forward to seeing my next grandchild due in july.
glad your new medication is helping.
wendy xx
I so know how you feel, I wake at night with that horrible feeling I am trying to keep calm. The doctor prescribed lorazepam which helps, we found out the hard way that I can't be off the bipap for more than a few minutes. I pass out then stop breathing. The hospital gave me a spare machine I'm now also using eyegaze which is fantastic.
I don't know what my fvc is and don't want to really, I am just concentrating on hanging on and looking forward to seeing my next grandchild due in july.
glad your new medication is helping.
wendy xx
wishmobbing
Senior member
- Joined
- Dec 5, 2017
- Messages
- 872
- Reason
- Lost a loved one
- Diagnosis
- 07/2017
- Country
- DE
- State
- BW
- City
- Stuttgart
Thanks for checking in, Pete!
tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
sorry to report around 4 i started with another air hunger fit. nurse was here is increasing meds. cant where bipap as pressure hurts my diaphragm PT coming out to adjust - another slide downhill
wishmobbing
Senior member
- Joined
- Dec 5, 2017
- Messages
- 872
- Reason
- Lost a loved one
- Diagnosis
- 07/2017
- Country
- DE
- State
- BW
- City
- Stuttgart
Sorry to hear. I wish you no pain and no panic. Hope the adjustments will help you. Sending strength!
affected
Guru status reached
- Joined
- Apr 26, 2013
- Messages
- 16,096
- Reason
- Lost a loved one
- Diagnosis
- 05/2013
- Country
- OZ
- State
- AU
- City
- lala land
I would like to sit and virtually hold your hand Pete - such an awful disease, so many amazing people who should never have to go through any of this xxxx
- Joined
- Nov 5, 2009
- Messages
- 14,256
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
- City
- Seattle
Sorry to hear this, Pete. Make sure they adjust the trigger/cycle sensitivity as well as the pressure, as you may need shorter (most likely) or longer breaths these days.
Best,
Laurie
Best,
Laurie
Narrowminded
Extremely helpful member
- Joined
- Apr 30, 2016
- Messages
- 2,830
- Reason
- Lost a loved one
- Diagnosis
- 07/2007
- Country
- US
- State
- PA
- City
- Pittsburgh
More hugs Pete, holding your hand from afar.
Hugs,
Sue
Hugs,
Sue
- Status
