I was just at a week long physical therapy conference and attended a great 4 hour lecture on PT for CF. It made me realize how frustrated I am with my clinic and how lacking and basic the care there is.
These PTs were more enthusiastic and more determined about treating CF than anyone I've encountered at UMC. I don't know what it is but apparently the East Coast has got their crap together because we are seriously lacking over here.
They presented on so many things that have never even come up in discussion at the clinic;
1. Bone density scans. NEVER has anyone at UMC mentioned the risks of osteoporosis or getting a scan with me. Never. Meanwhile at multiple places on the East patients are getting scans every year starting at age 10.
2. Stress urinary incontinence, which about 70% of female Cystics will get, and pelvic floor training.
3. Inspiratory muscle training
4. Postural dysfunction and training
5. Airway clearance techniques that are *gasp* tailored to each patient
6. Maximal exercise testing with every vital recorded that you can think of.
7. Exercise program prescription
Where I am they don't know that the hell to do with adults. NEWSFLASH, 49% of those in the CF national registry are 18+! We're getting older! Which means new and different issues.
The care here seems so, so basic. It's just, "Have you been doing your airway clearance? Not really? Well you should." And that's it. There's no new ideas going around, there's no discussion that isn't patronizing or demeaning. I say that I *try* to exercise when/if I can and they just say, "Ok." No follow up questions, no suggestions, and again no new ideas. I've NEVER had the results of my bloodwork or cultures discussed with me. I could be growing MRSA (or Nocardia again) for all I know and they'd never tell me until it was too late. I have to fight to get my meds because everything with them takes so damn long. Messages get misplaced, or are never recorded, we play phone tag like you wouldn't believe. It's been almost 3 months and I haven't been able to get hypertonic or albuterol and I'm feeling it. UMC doesn't incorporate PT at all, and probably never will (they hate PTAs, which is fine because I wouldn't want to work for them anyways). They just don't have their shit together. We left for a reason, and because I'm getting older my insurance says I have to go back. I feel as if they're thinking, "Maybe if we just kind of ignore the adults and let them do whatever their problems will magically disappear."
So, I'm frustrated. This isn't nearly the best care out there. I'm not even asking for "the best." Just for people who have some structure and know what to do with an adult Cystic. Phoenix is no better, so I guess I'm out of luck in AZ. It's just another reason to get out of here ASAP. Honestly, I'd rather only see those PTs at the conference than this whole "team" here at clinic. They've got the drive and the ideas for treating CF and I trusted them more after 4 hours than an entire lifetime with the clinic.
These PTs were more enthusiastic and more determined about treating CF than anyone I've encountered at UMC. I don't know what it is but apparently the East Coast has got their crap together because we are seriously lacking over here.
They presented on so many things that have never even come up in discussion at the clinic;
1. Bone density scans. NEVER has anyone at UMC mentioned the risks of osteoporosis or getting a scan with me. Never. Meanwhile at multiple places on the East patients are getting scans every year starting at age 10.
2. Stress urinary incontinence, which about 70% of female Cystics will get, and pelvic floor training.
3. Inspiratory muscle training
4. Postural dysfunction and training
5. Airway clearance techniques that are *gasp* tailored to each patient
6. Maximal exercise testing with every vital recorded that you can think of.
7. Exercise program prescription
Where I am they don't know that the hell to do with adults. NEWSFLASH, 49% of those in the CF national registry are 18+! We're getting older! Which means new and different issues.
The care here seems so, so basic. It's just, "Have you been doing your airway clearance? Not really? Well you should." And that's it. There's no new ideas going around, there's no discussion that isn't patronizing or demeaning. I say that I *try* to exercise when/if I can and they just say, "Ok." No follow up questions, no suggestions, and again no new ideas. I've NEVER had the results of my bloodwork or cultures discussed with me. I could be growing MRSA (or Nocardia again) for all I know and they'd never tell me until it was too late. I have to fight to get my meds because everything with them takes so damn long. Messages get misplaced, or are never recorded, we play phone tag like you wouldn't believe. It's been almost 3 months and I haven't been able to get hypertonic or albuterol and I'm feeling it. UMC doesn't incorporate PT at all, and probably never will (they hate PTAs, which is fine because I wouldn't want to work for them anyways). They just don't have their shit together. We left for a reason, and because I'm getting older my insurance says I have to go back. I feel as if they're thinking, "Maybe if we just kind of ignore the adults and let them do whatever their problems will magically disappear."
So, I'm frustrated. This isn't nearly the best care out there. I'm not even asking for "the best." Just for people who have some structure and know what to do with an adult Cystic. Phoenix is no better, so I guess I'm out of luck in AZ. It's just another reason to get out of here ASAP. Honestly, I'd rather only see those PTs at the conference than this whole "team" here at clinic. They've got the drive and the ideas for treating CF and I trusted them more after 4 hours than an entire lifetime with the clinic.
And I cannot imagine Abby going that long with out those 2 meds!!! I would be fit to be tied! I would probably be sitting in their office singing loudly until they got me her prescriptions! That is unacceptable. I don't have any suggestions other than find a new adult clinic, just wanted to say I'm so sorry...that's awful....they should care about their patients!!!