labellavita
New member
Just wondering if anyone else is as pissed off as I am about the cff "mandating" that clinics branch off and have separate adult clinics... i know at some places this isn't a new idea, but when youve had the same dr for 18 years, why the hell would you want to switch to a new one who has only a few years experience on the subject?
im ranting because I just flew back to Massachusetts to see the dr I had when I was growing up. I dont live there anymore but the Drs i have where I currently am are doing nothing to help me, and the nursing staff at this hospital is really... poor. So, anyway. I go back, end up in the er from throwing up for three days before I get to schedule my appointment, and am told I MUST be put on the adult floor (where the nurses have been through a 1 week training seminar on cf... HA!) with a dr who has been working with them for 6 months, who impresses no confidence when I initially meet him, and am stuck with a lovely but noninformed pulmonary team. what a wonderful experience. I have severe digestive problems... because of massive scar tissue due to a botched surgery last year, plus colitis, plus bowel wall thickening, plus fibroids on my uterus... thus.. pain. their treatment course. miralax. apparently, having 7 bms a day is not the antithesis of constipation. my pfts went from 30 to mid 50s in 2 weeks, usually 70s after 2 weeks, stayed an extra 5 days, caught a cold and asked to leave if they weren't going to change the treatment course and try to find out what was causing the pain. guess what. i got discharged. amazing treatment, my friends. had to fly back to albuquerque sick. got to see the dr i intended to see once. got to see the cf dr i was forced to have... 2x... 3 including the meeting in the er.
obviously these people have been extensively trained in the treatment of cf... if cf means flush em with antibiotics and stool softeners & dont listen to a thing they say.
What bothers me is the forced transition nationwide is about stats... stats = funds. and i understand the importance. but the funds they're receiving aren't helping me any. i know that sounds selfish but at this point, after the past 2 years... i couldn't care less. because of the extremely poor care i've received locally by the "adult" cf team i have been hospitalized more than 18 times in the past 24 months. I've lost 15 pounds. Ive gone completely broke because I can't work. And after spending money on a trip back east to see a great doctor that i've known for 20 years, im told i cant because of some bs.
--
im dont ranting. but has anyone else had these horrible experiences? or am I just getting the crap end of the stick with my medical providers.
on a positive note. im moving to los angeles this summer... anyone have any recos on GOOD DOCTORS who know what theyre doing?!?
Thanks! =)
Seriously, sorry for the ranting and complaining. I just got a phone call from the clinic of the dr i dont like back east asking if i was going to make my appt tomorrow... I didn't want to cuss the lady out, so... I did to you all =)
im ranting because I just flew back to Massachusetts to see the dr I had when I was growing up. I dont live there anymore but the Drs i have where I currently am are doing nothing to help me, and the nursing staff at this hospital is really... poor. So, anyway. I go back, end up in the er from throwing up for three days before I get to schedule my appointment, and am told I MUST be put on the adult floor (where the nurses have been through a 1 week training seminar on cf... HA!) with a dr who has been working with them for 6 months, who impresses no confidence when I initially meet him, and am stuck with a lovely but noninformed pulmonary team. what a wonderful experience. I have severe digestive problems... because of massive scar tissue due to a botched surgery last year, plus colitis, plus bowel wall thickening, plus fibroids on my uterus... thus.. pain. their treatment course. miralax. apparently, having 7 bms a day is not the antithesis of constipation. my pfts went from 30 to mid 50s in 2 weeks, usually 70s after 2 weeks, stayed an extra 5 days, caught a cold and asked to leave if they weren't going to change the treatment course and try to find out what was causing the pain. guess what. i got discharged. amazing treatment, my friends. had to fly back to albuquerque sick. got to see the dr i intended to see once. got to see the cf dr i was forced to have... 2x... 3 including the meeting in the er.
obviously these people have been extensively trained in the treatment of cf... if cf means flush em with antibiotics and stool softeners & dont listen to a thing they say.
What bothers me is the forced transition nationwide is about stats... stats = funds. and i understand the importance. but the funds they're receiving aren't helping me any. i know that sounds selfish but at this point, after the past 2 years... i couldn't care less. because of the extremely poor care i've received locally by the "adult" cf team i have been hospitalized more than 18 times in the past 24 months. I've lost 15 pounds. Ive gone completely broke because I can't work. And after spending money on a trip back east to see a great doctor that i've known for 20 years, im told i cant because of some bs.
--
im dont ranting. but has anyone else had these horrible experiences? or am I just getting the crap end of the stick with my medical providers.
on a positive note. im moving to los angeles this summer... anyone have any recos on GOOD DOCTORS who know what theyre doing?!?
Thanks! =)
Seriously, sorry for the ranting and complaining. I just got a phone call from the clinic of the dr i dont like back east asking if i was going to make my appt tomorrow... I didn't want to cuss the lady out, so... I did to you all =)