Man, I'm sitting here reading posts about all these drugs/inhalers/etc. people are using and I've never heard of any of them!!! I'm a 23 year old female in Ontario, diagnosed when I was 8, and haven't stayed in the hospital since. I go for a check-up maybe once every year, except this year I haven't gone yet. My PFT's aren't that good (FEV = 65 - 70%), but for some reason I never get colds. I usually go to the clinic in the Ottawa General Hospital and I've always gotten the feeling that the doctors there were ignoring me. (Now I know for sure!) I ask them about new treatments and advances, and they're still telling me to just keep doing what I'm doing! I still do chest percussion (I do my fronts, my husband does the backs) and someone recently told me that no one does that anymore! Everyone nowadays has these neat vests and stuff! I feel a little put off! And I'm reading about all these interesting new inhalers, meanwhile I'm still taking Ventolin, which also apparently no one takes anymore. I feel totally out of the loop! And I'm a little pissed because I've been asking my doctor about new treatments and he's never said a word. (Great guy eh?!) Anyways, I've recently moved to southern Ontario and I know there's a clinic in London and one in Kitchener. I'm right in the middle, so I was wondering if anyone would like to recommend one of these clinics/doctors or any others in this area. I would really like to speak with a better doctor to finally get out of the 90's treatments! Thanks.
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Call Me Old Fashioned........
- Thread starter anonymous
- Start date
Yeah but why fix what isn't broken. Other than the vest for conveneince, sounds like you are doing fairly well. I am not at all trying to be smart mouth or anything, in fact I am happy to see someone doing well without all the meds. I strongly feel that most doctors over medicate in a lot of cases, just to cover the bases.
If you live in Canada, the vest is not available there......
If the meds and treatments work for you, keep on doing it.
I never owned a vest, I had hand cupping right up to transplant time. I did not mind it. I enjoyed it and so did my family. It was together time, catch up on events, sing, pray, listen to music etc. Many couples and families can't find the time for that, and this forced us to do that.
Good luck
Joanne
luckylungsforjo@aol.com
If the meds and treatments work for you, keep on doing it.
I never owned a vest, I had hand cupping right up to transplant time. I did not mind it. I enjoyed it and so did my family. It was together time, catch up on events, sing, pray, listen to music etc. Many couples and families can't find the time for that, and this forced us to do that.
Good luck
Joanne
luckylungsforjo@aol.com
Emeraldmirror
New member
Hey I actually live in kitchener, formally from Windsor, I have been going to the Toronto clinic since I was diagnosed. I know the London clinic is really good, never have actually been to the Kitchener clinic myself, but the London clinic doesn't have the transplant ward or whatever it was anymore, but I like Toronto because a lot of research and stuff comes from there. percussion physio is actually the best but you can ask your doctor (which ever clinic you decide to go to ) about either the pep mask or the acapella. The vest is an american treatment not sold in Canada because it's not proven to be better than anything else and can be very very costly.
Ashley 21 w/cf
Ashley 21 w/cf
The vest is convenient, but if it was more practical for me I would prefer the manual clapping. I enjoy the clapping & feel I get more up with each treatment with it. If its not broken dont fix it is the old saying. If you are happy with your status & feel good with how things are then leave it. Never free pressured to go with the "flow" because something seems to be working for others.
Emily65Roses
New member
Yeah don't feel too out of place. Granted, I know about most of the options out there, but I still resort to manual chest therapy. As much as the others provide convenience, I hated them. So Mike beats my back every night for half an hour. Unless you really need the Vest or something for convenience, independance, conflicting schedules, or whatever... I say no harm in continuing with the manual therapy. Like others have said, I feel I get more out of that (and I have tried the Vest, the Flutter, and the Acapella... none of which I liked AT ALL) anyway.
My physio still does chest percussion on me too. And my family does it on days my physio doesn't come and i need it. When i was younger my mom did it every day. Overhere cpt isn't done much anymore either. But for me it works the best. And it doesn't take to much energy to get mucous out as when i would do other therapy things.
I read a good deal of the original post, but I surely have no idea how to comment on the rest of this...But I will do what you ask me to do, I will call you old fashioned. So here we go..."OLD FASHIONED!!!". Grats. You seem cool to me. Wanna make me an old school chicken/turkey pot pie?
If you are admitted to the hospital.....would they ask you to do the vest or is the manual clapping the normal procedure for inpatient stays. Unless a patient requests otherwise or there are othe reasons why at my hospital they feel part of being in the hospital is to get the treatment you wouldnt get at home. That means the type, the amount, the intensity & the full concentration. If its good enough in the hospital (for me at least) then it should be good enough at home!
Hey there,
I currently go to the Ottawa hospital...and I know what you mean. When I started, my pft's were in the 80's. Two years later, they are high 50's. I know a lot of that was due to my lifestyle (partying, not doing cpt's, smoking even ), however, they never really recomended any new treatments. It seems that if i want to try something, I have to ask. I asked about an inhaler, about zithromax, tobi (which i found out doesn't benefit me anyways), Hypertonic Saline. I read here that zyvox is good against MRSA, so why hasn't he talked to me about it? Personally, i don't mind, cause I do a lot of research into cf, and i trust myself more than my doctor, who sees a lot of patients. However, i feel sad for the people that don't take an initiative into their own health, and just take the doctors advice. Cause then in my case, I wouldn't be doing a lot of things i am now.
I dunno, tell him what you wanna be trying. Ask what you culture, and if some of the things (tobi, zithromax) pulmozyme, hypertonic saline, etc could benefit you. I think for the adult team, it is up to you to make the decisions, and they are there to fill the prescriptions.
I currently go to the Ottawa hospital...and I know what you mean. When I started, my pft's were in the 80's. Two years later, they are high 50's. I know a lot of that was due to my lifestyle (partying, not doing cpt's, smoking even ), however, they never really recomended any new treatments. It seems that if i want to try something, I have to ask. I asked about an inhaler, about zithromax, tobi (which i found out doesn't benefit me anyways), Hypertonic Saline. I read here that zyvox is good against MRSA, so why hasn't he talked to me about it? Personally, i don't mind, cause I do a lot of research into cf, and i trust myself more than my doctor, who sees a lot of patients. However, i feel sad for the people that don't take an initiative into their own health, and just take the doctors advice. Cause then in my case, I wouldn't be doing a lot of things i am now.
I dunno, tell him what you wanna be trying. Ask what you culture, and if some of the things (tobi, zithromax) pulmozyme, hypertonic saline, etc could benefit you. I think for the adult team, it is up to you to make the decisions, and they are there to fill the prescriptions.
Ok, lots of great posts. I will definately look into the London clinic. And the Ottawa clinic definately sucks. The adult clinic anyways. I loved CHEO! (Kids clinic).
And Sean, I was very interested in your oil of oregano information. I just graduated with a degree in Nutritional Science, so I'm really excited to start looking into this more. If I decide to go to grad school, maybe I'll do my thesis on the effects of OO on CF patients.
It's also funny because I'm old fashioned in so many ways (ie - I knit, bake alot, go to BINGO with my grandma, etc.), so I may as we be old fashioned in my CF treatments too!!
And Sean, I was very interested in your oil of oregano information. I just graduated with a degree in Nutritional Science, so I'm really excited to start looking into this more. If I decide to go to grad school, maybe I'll do my thesis on the effects of OO on CF patients.
It's also funny because I'm old fashioned in so many ways (ie - I knit, bake alot, go to BINGO with my grandma, etc.), so I may as we be old fashioned in my CF treatments too!!
thelizardqueen
New member
Well I live in Winnipeg, and I've never heard of the vest either, or a lot of the meds that are mentioned on here too. I still do manual clapping and I do use a flutter too. The only meds I'm on for my CF is tobi, colymycin and cipro. It all seems to be working for me, as I haven't been in hospital for a lung infection since I was 16, and then once when I was 22 for a pulmonary embolization.
M
melleemac
Guest
Anonymous
When did you stop going to CHEO? Thats where my twin boys go!
Mel
When did you stop going to CHEO? Thats where my twin boys go!
Mel
C
Cutecurlz
Guest
Hey there...I live in Kitchener too and I go the the CF Clinic in the Grand River Hospital. They are ok there I guess. I'm used to being spoiled by the CF Clinic in BC though. I just moved to Kitchener a lil over a yr ago so I'm still not used to how they run things out here...