I don't know about you, but for me - for my late husband's family - CF (lung/pancreatic disease) is very much a family disease. He has/had 3 sisters and a brother.
He died from bronchiectaisis complicated by MRSA and PA (tho' the death certificate lists liver failture first and sepsis second) and the last few years his pancreas didn't work worth sh**.
His eldest sister had blebs removed as a youngster.
His brother takes enzymes for "idiopathic pancreatitus"
His middle sister had a spontaneous pneumothorax a couple of years ago
and she has 2 college-aged daughters living with CF.
We're always "worrying" about someone -- tho' our "normal" is such that we don't usually "worry" the same way others do. We mostly get on with our lives and enjoy each others' company.
But right now as I posted in <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=18&threadid=30004&enterthread=y&STARTPAGE=1#first">http://forums.cysticfibrosis.c...ad=y&STARTPAGE=1#first</a> we're really focused on the eldest girl with CF because she needs a transplant like "yesterday". She and her mom and her 2 biological aunts are in Pittsburgh where she is in ICU and 1st on their transplant list.
It some ways it helps that so many family members "have" CF (or something close enough that it would "pass" as CF) because everyone "gets" it. On the other hand, people can't always actually physically be there for each other because they are sick themselves and can't travel, or because cross contamination is an issue, or because one family "unit" is so out flat that they don't have squat left over to support another family "unit".
I'm sort of an outsider now (as an "outlaw" and a "recoupled" widow living far away in Florida) but I carry them all real tight in my heart still. Always will.
I know this post is sort of "off topic" for this forum. But would you all join me in keeping my inlaws (especially Lindsay) extra tight in your heart?
Thanks,
LisaV
(Betsy in the 3D world)
He died from bronchiectaisis complicated by MRSA and PA (tho' the death certificate lists liver failture first and sepsis second) and the last few years his pancreas didn't work worth sh**.
His eldest sister had blebs removed as a youngster.
His brother takes enzymes for "idiopathic pancreatitus"
His middle sister had a spontaneous pneumothorax a couple of years ago
and she has 2 college-aged daughters living with CF.
We're always "worrying" about someone -- tho' our "normal" is such that we don't usually "worry" the same way others do. We mostly get on with our lives and enjoy each others' company.
But right now as I posted in <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=18&threadid=30004&enterthread=y&STARTPAGE=1#first">http://forums.cysticfibrosis.c...ad=y&STARTPAGE=1#first</a> we're really focused on the eldest girl with CF because she needs a transplant like "yesterday". She and her mom and her 2 biological aunts are in Pittsburgh where she is in ICU and 1st on their transplant list.
It some ways it helps that so many family members "have" CF (or something close enough that it would "pass" as CF) because everyone "gets" it. On the other hand, people can't always actually physically be there for each other because they are sick themselves and can't travel, or because cross contamination is an issue, or because one family "unit" is so out flat that they don't have squat left over to support another family "unit".
I'm sort of an outsider now (as an "outlaw" and a "recoupled" widow living far away in Florida) but I carry them all real tight in my heart still. Always will.
I know this post is sort of "off topic" for this forum. But would you all join me in keeping my inlaws (especially Lindsay) extra tight in your heart?
Thanks,
LisaV
(Betsy in the 3D world)