The procedure to insert a feeding tube in to my stomach has been scheduled for March 5th.
I think that's about ten days after the Conway Cup. It looks like I'll be taking it easy during that interim period.
The decision to put in the tube was forced by my Forced Vital Capacity measurement: how much air I can quickly breath out. My measurement was 2.77 litres, which is 48% of what an average man my age can do.
At that measurement, the feeding tube can be inserted in an outpatient procedure. There is a threshold at which the procedure would have to be done as an inpatient, and another threshold at which the tube can no longer be safely inserted.
Saturday, February 15, 2014
Change
Nothing has changed.
I often compare living with ALS to a journey.
I often point out that the journey of a pALS has the same beginning and destination as any other. The path may be different, but those two points are consistent. That's still the same.
I suppose that the emotional limbo I've felt for a few days has simply been the time its taken me to realize the above.
I often compare living with ALS to a journey.
I often point out that the journey of a pALS has the same beginning and destination as any other. The path may be different, but those two points are consistent. That's still the same.
I suppose that the emotional limbo I've felt for a few days has simply been the time its taken me to realize the above.
Friday, February 7, 2014
Turn
The news from Mondays visit to Hopkins is still sinking in.
Amanda and have decided to cancel todays therapy session, and enjoy a cocktail instead...maybe we should shop around for a counselor with superb mixing skills. Maybe our current counselor can mix a mean cocktail. I should ask.
The looming need for a feeding tube doesn't really concern me -- you can pour cocktails down there, right?
But my prognosis is proving harder to process. In a way, its strange that my prognosis would be so difficult to grasp. I've yet to hear of anyone making it out of life alive. And I've known the destination of this journey ever since my diagnosis.
Maybe the difficulty in comprehending my prognosis is simply because my journey feels like it's taken such a sharp, definitive turn.
Here's a toast to handling sharp turns.
Amanda and have decided to cancel todays therapy session, and enjoy a cocktail instead...maybe we should shop around for a counselor with superb mixing skills. Maybe our current counselor can mix a mean cocktail. I should ask.
The looming need for a feeding tube doesn't really concern me -- you can pour cocktails down there, right?
But my prognosis is proving harder to process. In a way, its strange that my prognosis would be so difficult to grasp. I've yet to hear of anyone making it out of life alive. And I've known the destination of this journey ever since my diagnosis.
Maybe the difficulty in comprehending my prognosis is simply because my journey feels like it's taken such a sharp, definitive turn.
Here's a toast to handling sharp turns.
Wednesday, February 5, 2014
Tuesday, February 4, 2014
Conservatively
Amanda and I returned home from Baltimore today. I had an appointment at the ALS Clinic at Johns Hopkins yesterday afternoon.
If you visit this blog frequently, you may recall that clinic appointments follow a certain schedule; see the occupational therapist, see the physical therapist, see the MDA representative, and then see the doctors and nurses that are the backbone of the clinic.
My breathing test was conducted during the final section. My breathing capacity is 48% of what it should be for an average man my age.
That value means I'm now due to get a feeding tube inserted in the next 8 weeks.
It also means that my prognosis is, conservatively, making it another 12-18 months.
If you visit this blog frequently, you may recall that clinic appointments follow a certain schedule; see the occupational therapist, see the physical therapist, see the MDA representative, and then see the doctors and nurses that are the backbone of the clinic.
My breathing test was conducted during the final section. My breathing capacity is 48% of what it should be for an average man my age.
That value means I'm now due to get a feeding tube inserted in the next 8 weeks.
It also means that my prognosis is, conservatively, making it another 12-18 months.
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