- Joined
- Jan 28, 2016
- Messages
- 198
- Reason
- Lost a loved one
- Diagnosis
- 09/2014
- Country
- AUS
- State
- Wa
- City
- Kendenup
Help!
In the last week we have had visits by our GP, hospice nurse and palliative care specialist. ( she's head of palliative care in our large regional hospital that is 1 hour away.)
We do feel very special that we have so many people helping us!
The problem is, all of them finally get around to telling us that " death can creep up quickly....breathing can just stop......anytime...." This is usually after we have been discussing all the other stuff about end of life etc.
I just can't stop thinking that they are getting more concerned about my PALS.
But, we feel fine.( or as fine as can be with this bloody disease)
There are no headaches, fuzziness, confusion or signs of CO2 build up.
We do have to use the breathing machines 19 out of 24 hours now.
We have been using NIV since Jan 2015.
We have also noticed more swelling of hands and feet . My PALS hand movements have almost all gone now too. On the positive side, we can still chew,gargle,and talk.
We have been concentrating so hard on living that I suspect that the end is close.
How do I know?
I just really am reaching out for others experiences with respiratory failure.
I think that I will read, comprehend and then tuck that away and get on with enjoying the day.
I was left totally exhausted after the last visit yesterday .emotions........
In the last week we have had visits by our GP, hospice nurse and palliative care specialist. ( she's head of palliative care in our large regional hospital that is 1 hour away.)
We do feel very special that we have so many people helping us!
The problem is, all of them finally get around to telling us that " death can creep up quickly....breathing can just stop......anytime...." This is usually after we have been discussing all the other stuff about end of life etc.
I just can't stop thinking that they are getting more concerned about my PALS.
But, we feel fine.( or as fine as can be with this bloody disease)
There are no headaches, fuzziness, confusion or signs of CO2 build up.
We do have to use the breathing machines 19 out of 24 hours now.
We have been using NIV since Jan 2015.
We have also noticed more swelling of hands and feet . My PALS hand movements have almost all gone now too. On the positive side, we can still chew,gargle,and talk.
We have been concentrating so hard on living that I suspect that the end is close.
How do I know?
I just really am reaching out for others experiences with respiratory failure.
I think that I will read, comprehend and then tuck that away and get on with enjoying the day.
I was left totally exhausted after the last visit yesterday .emotions........