We need a staff!

[Aboveallislove]

My group of friends use to tease one of us about her "staff" ie grocery delivery service, housekeeper, landscaper, nanny etc. well we need a staff just to keep p with stupid medical supplies! Ds broke his 50 psi compressor. Spent the entire morning trying to get it taken care of. Other than wait on hold health insurance info was great...but then one supplier didn't want to provide because of low reimbursement I think...I'll take are of them later...then had to find a new supplier, fax documents, they read insurance wrong so had to call back and do whole hold again with health insurance then talk with provider again. Ds was screaming for attention at the end but I turned into a good love and logic of I wish I could have played...why couldn't I.....oh, that's right you pulled the compressor off the able and broke it! Oh and this is after rush over the weekend just to get a normal model to do treatments...end of vent

 

[enniob]

Maybe we'll have CF Bots in the future...they'll take care of all your pills, presenting them at the right time in the right amounts. They'll take care of all the devices, clean them order new parts when they break. They'll take care of reminders and appointments with doctors and therapists. They'll offer you support and advice when you need answers or just need to vent off. They'll find an insurer that reimburses and arrange all the paperwork digitally through remote secured connections. They'll help you with cleaning the house, folding the laundry, cooking meals and they'll even tell you what you should be eating for maximum performance and match that up with enzyme type and amount. They will give you back the time that mother CF has taken away from you. If only we could have a CF Bot. Maybe one day...

 

[Rebjane]

Do you have a warrantee of your compressor? Hugs to you!

 

[Aboveallislove]

No, and it was less than two years old, but great insurance covered and we already met our catastrophic cap so no out of pocket. Kinda sucks though that our normal is most people's catastrophic.

 

[Ratatosk]

I just need someone to cook and clean for me. Oh and work out for me. So hard to fit in exercise for myself.

 

[Aboveallislove]

Lol...although I sure can work up sweat trying to keep my head above water!

 

[Ratatosk]

I'm sure I am, too! But I'm also eating off ds' plate -- grilled cheese or popcorn with extra butter, snacks, candy, bacon....

 

[JENNYC]

Oh no!! We can handle it when the vest goes out but not the nebulizer!! Hugs for all the frustration!! Ladies we went to a meeting with 2 A&M Doctors/Scientist that really shed a whole lot of new light on things that I think we should have known as parents from the get go. They video'd the meeting and will be getting us a link shortly so I can share. I was up most the night after the meeting thinking of everything that had been drilled into me all these years that really I've questioned from the day 1 ...but I am not a doctor so you listen... right? This had to do with how our enzymes are working with protein. They did research that showed that enzymes don't start breaking down protein until 2 to 3 hours after taking them. The protein that was eaten would already be out of the stomach by then. That would explain why older CF patients have no muscle mass and your lungs is a muscle. Muscles need protein. The doctors tried to get a hold of Abbot to discuss with them if they had done any research and get their take on it since they make creon and Abbot would not return their call. Not trying to take over your thread but I really wanted to let you two especially know. As soon as I get the link I will post it on the forum for all and see what everyone thinks. Hugs to you sweet friend and I hope your nebulizer nightmare is over soon! Thankfully Abby's has suction cups at the bottom that hold it tight in place.

 

[Aboveallislove]

Thanks Jenny! Yeah, we were "fine" in that I called on call doctor and our local Walgreens who is amazing (likely because we probably single handledly make their monthly sales quota), and they had one but closed in 40 minutes. The guy was willing to drive it to a 24 hour Walgreens after they closed if the script wasn't there in time but she literally called it in in time for us to get the portable low powered one. The 50 psi won't be here until Tuesday but we'll last. Oh, and the vest went out at the same time. And oh, we have high powered suction too, but DS is strong, especially when angry! (he just hit 85% for bmi...in part because he isn't eating solids because of a choking incident so now I have to worry about the insurance cutting off the drink supplements which I think would run $6,000 K a year!) please post those links when you can!
oh, and yes, the son's diet with lots of butter (that he doesn't eat but I keep cooking), isn't exactly helping as my 40+ metabolism slows down either!!!
hugs all