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Post by Blossom/Jackie W. on Aug 15, 2007 6:39:19 GMT -5
Has anyone had to ever go that long w/o their meds? (except Ventolin)
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Post by John on Aug 15, 2007 7:39:42 GMT -5
Jackie :
I could still use rescue meds up to 4 hrs hum!!! 48 hrs . Seems like a long time The longest I had to go was 24 hrs What would be the purpose for that length of time ?
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Post by Blossom/Jackie W. on Aug 15, 2007 8:41:16 GMT -5
Probably from a surgical perspective and fitness for same .....wanting to know just how bad the old lungs are w/o meds. I assume. But; I am trying to run it by my Pulmo Dr to see what he thinks (trouble is he's on vacation) Just my luck!
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Post by larrynz on Aug 15, 2007 17:54:19 GMT -5
Symbicort is supposed to last 12 hours, I find at 10 hours my breathing is going down fast.
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Post by cocojax on Aug 15, 2007 18:30:45 GMT -5
Jackie I had to call Toronto General today regarding one of the tests being done tomorrow, turns out I am not having that test but no meds for 48 hrs. That includes Spiriva, Advair and Ventolin. The test was a Metacholine, for the Pulmonary function test no bronchodilator for 4 hrs prior to test...
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Post by Blossom/Jackie W. on Aug 15, 2007 20:45:31 GMT -5
I'm a bit confused Ellen. Are you having to do the 48 hours without meds? If so ....when?
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Post by maryaz on Aug 15, 2007 22:42:37 GMT -5
Jackie; Everyone is different and I am at a very severe stage of COPD but when I was off my medicine for shorter time than you are saying, I didn't do well.
I had been using Advair 500/50 and Spiriva and Albuterol as need. I was going to be in a trial study. I stopped my Spiriva which was not a good thing at all. I don't remember how long. I replaced it with Atrovent HFA which was awful for taste. I could use my Albuterol and keep taking Advair until testing time.
After a couple weeks I had to not use any medicine for a test. I didn't make it long and could feel the affect of it. To not get in trouble I dropped out.
All I am suggesting is that you do depend on some meds more than we realize. I hope you find all of what you need.
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Post by Vic on Aug 16, 2007 14:26:54 GMT -5
Jackie -- I would imagine that I could cut 24 hours with no inhalers...but 48 hours...not likely that I could do it. I feel that 24 hours would be do-able because Spiriva has an effect up to 36 hours after being taken. It would be rough, I'm sure, but 48 hours would be too much for me. -- Vic
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Post by cocojax on Aug 16, 2007 15:42:05 GMT -5
I'm a bit confused Ellen. Are you having to do the 48 hours without meds? If so ....when? They gave me the paperwork for the Metacholine Test, but when I phoned they told my I was not scheduled for it, but if I was to have a the Metacholine test they say you should not have any meds for 48 hrs. Today I just did not take my Advair, Spiriva or Ventolin before the Pulmonary Function Test.. |
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Post by Blossom/Jackie W. on Aug 16, 2007 17:22:38 GMT -5
I suspect too much for me too Vic.....scary. I'm not sure what I should do here yet. I've had the witholding of meds frequently that you mentioned Ellen (CoCo) since the early evening, before testing in the am. I do that every 3 months with the study I'm in. Rose was even kind enough to go ahead and check with her Dr today......yuck.....not a good report  . Gr-r-r-r-rr- I still have a day or so to get this checked or decide to take the risk. Get this....the surgeon's office called me back today when I queried (he's on vacation) ....they checked with the Pulmo lab..... Yes it can casue an exacerbation....if I can't do it they'll just eliminate part of the test. "They (the lab) doesn't want me arriving...."distressed". Good Lord. I'm chuckling. What the dickens do they think I should be like after 48 hours no meds?  ?? I understand the NEED to ascertain my surgery fitness but HECK! I'm just shaking my head...... |
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Post by LindaNY on Aug 16, 2007 20:11:34 GMT -5
 Jackie, I'm afraid they just have no clue how badly going without meds will affect us. Nitwits!!! They have never been there and done that.
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Post by Blossom/Jackie W. on Aug 16, 2007 20:29:10 GMT -5
Sometimes I'd like to grab folks by the shoulders and give a good shake (or; the short hairs) Oh well.... |
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Post by larrynz on Aug 16, 2007 21:02:09 GMT -5
I get mail every 3 months to tell me to make an appointment for my free check up, at the bottom it says not to take my breathing meds, for a long time I did as I was told. Then visit after visit they never as much as used a peak flow, so I have stopped. What they fail to understand is without the medicine I can't even walk the dogs, I even have trouble walking to the clinic.  |
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Post by morningstar on Aug 16, 2007 21:05:38 GMT -5
Jackie,
Believe me I know this is anything but funny. But reading yours and Linda's post made me remember something one of the top Lung Dr. in Pittsburgh ask me one evening I laughed then and still.
As he was leaving he said we will help you here. Then turned around and looked me square in the eyes and said Mrs Leatham how much of your breath would you like back. DUH all of it.
They should all be required to live the way we feel for two weeks before they could practice.
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Post by cocojax on Aug 17, 2007 20:45:36 GMT -5
I found this on the internet:
Testimony of Pamela DeNardo
on behalf of American Lung Association and EFFORTS
(Emphysema Foundation For Our
Right To Survive )
before the Committee on the Judiciary U.S. Senate
September 5, 2001
If you would like to experience first hand what it is like to breathe with this disease, there is a very simple exercise to provide you with this experience. Simply put a straw in your mouth at the beginning of your day. Do not breathe in or out except through this straw. Even with healthy lungs, you will soon tire as you go about your daily activities. COPD patients do not have the option of taking the straw out of our mouths. And our lungs are not healthy.
Sounds like a pretty accurate description to me...
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Post by Blossom/Jackie W. on Aug 18, 2007 6:21:28 GMT -5
Thanks Ellen; I'm familiar with that piece and it's a good example ( I wonder if any of them really tried it; heck I think I'd have even brought the straws ) I stopped at the pharmacy yesterday; figured they, more than anyone, should know about meds etc. My lucky day ......I got a new gal (not one of my regulars.....I think THEY'RE on vacation too!!) She tells me yes an exacerbation can happen and it's not unusual for them them to do this to check for surgery fitness; and it's usually done under the supervision of your physician (remember; mine are all on vacation as well. BTW; this includes my GP, surgeon, and Pulmo Dr).......Maybe they all went together! Yes; I can expect increased wheezing etc etc. (In the past my worse time was trying to breathe at night; could never tell if I was passing out from lack of air from coughing or falling back to immediate sleep from exhaustion) I've still not decided what to do here but I have to decide soon. I'd have to stop the meds for Thur's test by Tues morning. Oh, and get this......my GP's away for the month so the odd ER Dr fills in at the clinic on and off (when they can after their shift at the hospital) It's hit and miss. I'm almost out of Symbicort and still haven't been able to snag a Dr (I'm gonna try again today) for a prescription. On the PLUS side however; I did check with the pharmacy ....they will give me an emergency refill if I need it.... |
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Post by morningstar on Aug 18, 2007 8:07:54 GMT -5
If you go to buy the straws give me a yell I will split the cost.
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Post by Blossom/Jackie W. on Aug 22, 2007 6:45:05 GMT -5
Shelly from Dr Hernandez's office was kind enough to call our house (while I was gone) on Monday. The Dr had just gotten back from vacation and I'd asked her to run it by him if she would, then call so that hubby could pass the info along. She did which was very kind. Basically I'm to give it a try (no meds) but if my breathing becomes labored to start back on my meds - still take the test but tell them how long w/o them before testing.
As of this morning (Wed)......my last meds were yesterday morning (Tuesday) though I did take 2 shots of ventolin before bed as a precaution (I needed to sleep). That I can have up to 6 hours before the PFT.
Keep your fingers crossed for me....I really DON'T want to wind up in the ER becasue of this.
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Post by Joyce7 on Aug 22, 2007 7:43:12 GMT -5
Not only are my fingers crossed but a prayer is being said too. You've done great, and if you need your meds, take them. You don't want to end up with an exacerbation. I didn't know they ever did this...it seems risky to me, but the main thing is that you are OK and don't decline or get into any type of breathing problem. I hope you slept like a baby with the fast acting inhaler. You do need your sleep and take good care of yourself...Joyce  |
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Post by Blossom/Jackie W. on Aug 22, 2007 15:33:19 GMT -5
I'm now 31 hours in.......I feel like Hell. My breathing is still tolerable etc.; absolutely no strength or energy. I'm not sure if it's becasue of the travel I did & meetings and/or the meds or a combination of both. I also wonder if it's becasue of the shock to my system including the stopping of Symbicort and the "inhaled" steroid portion.
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Post by LindaNY on Aug 22, 2007 18:04:15 GMT -5
Dear God Jackie, I sincerely hope the no inhaled steroid doesn't cause an exacerbation.
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Post by maryaz on Aug 22, 2007 23:28:57 GMT -5
Be careful Jackie. You do what you have to for yourself. Sure you don't want to get in trouble if you need the meds. Good luck with each step of this journey. You need to get some real R & R.  |
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?? I understand the NEED to ascertain my surgery fitness but HECK!
Jackie, I'm afraid they just have no clue how badly going without meds will affect us. Nitwits!!!
