Wake up tired.
Drink coffee.
Do albuterol via nebulizer.
Cough and spit.
Stop 1/2 way through treatment because I cough so hard that I puke up my coffee.
Cough and spit.
Take a break until stomach settles.
Cough.
Finish albuterol.
Cough and spit.
Do pulmozyme via nebulizer.
Cough.
Drink more coffee.
Cough.
Go to the bathroom and hope I don't have diarrhea or constipation. (TMI, I know)
Cough.
Take handle full of pills including prednisone, nexium, azithromycin, cetirizine hydrochloride, ADEK vitamins, vitamin A, Vitamin D, calcium, iron and stool softener(to offset the iron).
Cough.
Take ultrase mt 18 to help digest fat that I am about to eat.
Eat something so I don't get an upset stomach from the pills.
Cough.
Wait for my nurse to call to let me know when she will be here for PT.
Cough.
Log in to computer and phone system to work.
Cough.
Take ultrase mt 18.
Eat again.
Cough.
Nurse arrives, checks vitals and does chest PT for 1 hour.
Cough and spit. Cough and spit.Cough and spit some more.
Take ultrase mt 18.
Eat again.
Put on oxygen.
Walk down basement stairs to treadmill.
Cough and rest.
Get on treadmill, walk, cough and spit(all for 15 minutes).
Sit and rest before walking back up stairs.
Cough.
Hopefully take oxygen off.
Take ultrase mt 18.
Eat some more.
Cook dinner.
Take ultrase mt 18.
Eat.
Take more pills.
Rest.
Do albuterol via neb.
Cough.
Do pulmozyme via neb.
Cough.
Put on Vest and shake for 30 minutes.
Cough.
Turn up TV because I can't hear it over the vest.
Take ultrase mt 18.
Eat.
Go to bed.
Cough.
So there you have it...a look at my typical day.
Posts
4 comments:
Hey Steph...
One of the most amazing things to me after my new lungs, is the time I was given... The breathing is freaking amazing -- but I was given so much time...
I remember the life you just outlined... My CPT treatments, between pounding, vibes and coughing, took about two hours each -- and we did that four times daily... That's 8 hours. I spent another 2-3-4 hours on inhaled antibiotics or IV drips... Another 2-3 hours dedicated to eating the 8 small meals I needed to try to put on 15 pounds... (I managed to dodge a g-tube...) Another half hour or so for exercise. The few years I waited, I was spending somewhere around 15-16 hours daily doing some type of health maintenance...
I remember our first dinner at home, after I was released from the hospital. My wife, my Mom & Sis and I were around the table like we'd been so many evenings -- we had finished eating... And I remember that I started to cry. They all got very concerned -- and then I told them why and they started to cry too... It had just dawned on me that we didn't have to get up and pound on my chest for two hours...
Kari and her family gave me both of her beautiful lungs -- they gave me the ability to breathe freely... But they also gave me 16 extra hours to every day...
I hope your wait isn't long. I hope your surgery, recovery and life afterwards is as amazing as mine has been... Hang in there, buckaroo...
Love, Steve
Hi Steve,
Your comment was so much more eloquent then my post but I think we got the point across don't you?
Here's to breathing!
Stephanie
Hey Beautiful Chick...
My comment was not more eloquent than your post -- they're different animals... Yours is raw and real -- the people around us need to understand that...
And when you say "Cough.", it's not what they know as a cough... It's a gut-wrenching, exhausting, puke-causing exercise in opening some breathing space... The people that love us know that...
We both did get the point across, Steph. I hope your journey is like mine... For me, it will be 10 years in April and I think about this constantly... You're so precious and you've got so much to live for -- I hope in another 10 years we're sharing stories...
Love, Steve
Steph! Thanks for writing this list and including the hilarious "turn up the tv"- i have to turn it up like 10 times a day and by night it's so loud i'm like "why do i do that all day?"
ha.
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