Calvin-CALS
Active member
- Joined
- Sep 16, 2014
- Messages
- 42
- Reason
- CALS
- Diagnosis
- 11/2013
- Country
- US
- State
- TX
- City
- Los Fresnos
Last week, Patti and I went to the clinic and also met with our regional ALSA rep. Some good and some bad has come of this.
The Good: People are cracking, and we're starting to get equipment and other needs fulfilled. Patti's power chair has finally been approved (only took 6 months of games ...). in the meantime, the chair provider loaned us a power chair demo and a Hoyer lift and sling. She just got her Bi-Pap, cough assist and suction device today. All the paperwork is finally finished for her long term care insurance, and we should get an answer by the end of the week. Her van paperwork is all done, and it's going through the final approval at the last state office it needs to visit (I hope).
The Bad: Last Wednesday, her FVC was at 35%, a 50% drop in about 3 months. The MSN reassured her that it might not be as bad as it seemed. She might be measuring lower from the fatigue of the trip and the fatigue of months of struggling to breath without a bi-pap, though she clearly has needed one. On the other hand, breathing has become more difficult for her even in the last week since the clinic. She pants at almost all times, no longer able to breath easily on her side with an elevated head/chest, not even sitting in a chair. (We just got the bi-pap today, so we'll see how that helps.) She's eating noticeably less lately, even skipping her favorite desserts.
I fear that now that everything is moving along with DME and other support, it might be too late. She fears this, too, yet we're waiting to see how the respiratory equipment might help. I don't want her to die yet, but if she must and if she's going to not have much enjoyment from life here on out, I'd rather she go quickly and with the least physical and psychic discomfort as possible. I think she's terrified and wishes she wasn't facing this now. I wish I knew exactly what was happening and how long it would take. I wish I had control, at least the control of *knowing*.
A few weeks ago, I felt overwhelmed by the bureaucracy of insurance, government and medical offices. Today, I feel overwhelmed by her disease for the first time.
The Good: People are cracking, and we're starting to get equipment and other needs fulfilled. Patti's power chair has finally been approved (only took 6 months of games ...). in the meantime, the chair provider loaned us a power chair demo and a Hoyer lift and sling. She just got her Bi-Pap, cough assist and suction device today. All the paperwork is finally finished for her long term care insurance, and we should get an answer by the end of the week. Her van paperwork is all done, and it's going through the final approval at the last state office it needs to visit (I hope).
The Bad: Last Wednesday, her FVC was at 35%, a 50% drop in about 3 months. The MSN reassured her that it might not be as bad as it seemed. She might be measuring lower from the fatigue of the trip and the fatigue of months of struggling to breath without a bi-pap, though she clearly has needed one. On the other hand, breathing has become more difficult for her even in the last week since the clinic. She pants at almost all times, no longer able to breath easily on her side with an elevated head/chest, not even sitting in a chair. (We just got the bi-pap today, so we'll see how that helps.) She's eating noticeably less lately, even skipping her favorite desserts.
I fear that now that everything is moving along with DME and other support, it might be too late. She fears this, too, yet we're waiting to see how the respiratory equipment might help. I don't want her to die yet, but if she must and if she's going to not have much enjoyment from life here on out, I'd rather she go quickly and with the least physical and psychic discomfort as possible. I think she's terrified and wishes she wasn't facing this now. I wish I knew exactly what was happening and how long it would take. I wish I had control, at least the control of *knowing*.
A few weeks ago, I felt overwhelmed by the bureaucracy of insurance, government and medical offices. Today, I feel overwhelmed by her disease for the first time.