Samkl
Distinguished member
- Joined
- Nov 1, 2019
- Messages
- 143
- Reason
- Lost a loved one
- Diagnosis
- 08/2019
- Country
- AU
- State
- NS
- City
- Wollongong
So ... yesterday my brother was in the middle of an IVIG session, when the respirologist who did the CPET on 11 November turned up (one month anniversary of the test!). My brother had been told by his MND doctor, an endocrinologist and the community nurse, that even though he should have heard by now re: results from the CPET (stress ECG?), it must be all ok otherwise they surely would have contacted him. Not so ! Even though the echocardiogram he had done before the CPET came back normal, the CPET was "barn door abnormal", whatever that means. The respirologist is wondering if there isn't something happening with the heart, NOT the lungs. He's writing off months of breathlessness, which was the initial presentation, as anxiety. Not so sure. He's now ordered a second Stress ECG, as he doesn't think the first one looks at enough measurements. Hopefully the results will be back before Christmas 2020. The good news is the MND clinic's physiotherapist says he's presenting no physical weakness yet.
The irritating thing is my brother's now on a waiting list for the sleep clinic, with a 4 week delay, because of the delay with the respirologist, hasn't had arterial blood gases done, months after reporting shortness of breath, and if something comes up re the heart that needs medication, this may mean he is excluded from a trial his MND doctor has included him, for copper.
A bit of a rant, sorry. Nothing to be done but wait. I wish you all the very best.
Sx
The irritating thing is my brother's now on a waiting list for the sleep clinic, with a 4 week delay, because of the delay with the respirologist, hasn't had arterial blood gases done, months after reporting shortness of breath, and if something comes up re the heart that needs medication, this may mean he is excluded from a trial his MND doctor has included him, for copper.
A bit of a rant, sorry. Nothing to be done but wait. I wish you all the very best.
Sx