COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
Hi everyone. I haven't been on for some time now. Been reading a lot of your posts and sending good thoughts.
After having the PFT with a Fev 1 of 32% last fall I got very sick. Not sure what was wrong. It could have been a combination of no sleep, not eating much, plus a reaction to the Albuterol. Bacteria from the test equipment?
Some of you may know I had a planned trip to London then train to Paris. I went even though I was not well. I had finally gotten them to get me portable O2 ..borrowed some money for Respironics simply go plus about 9 batteries some I bought on eBay.
Good thing I was pushed for it as my O2 plummeted to low 80's in the air.
The pulmonologist and his PCP both didn't think I needed it. The first 2 days I was so out of it. We had tickets on day 2 for Train to Paris but I was usually out of it. They rented me a wheelchair. I don't remember much of the flight over, the train to Paris, or the day in Paris. I couldn't hardly walk.
I had taken some Ativan but only 1-.05 mg a day. The day of the flight I took one every 12 hours. So maybe that plus no sleep? But then my breathing was very labored. Anyway I can't believe the PCP who had told me to throw away the oximter! I am so untrusting of Drs and the medical field! I am better but have to use O2 on exertion. And at night of course
Had a cat scan but they didn't call so assumed it was negative. Had my reg Dr look at the chart and he said it was clear.
I had an echo with bubble test on my heart. Shows hole in heart which isn't that uncommon but with Atrial Defect. They want to do an angiogram to see if hole needs closed or if I have Pulmonary Hypertension. So far I have refused to schedule it.
I am tired of Drs right now. I quit my Advair and Albuterol and felt much better. When I told Dr he just sounded like a robot asking me for how long I have felt worse? I just told him I was better! He still prescribed 2 different inhalers that my part D doesn't cover, each about 250.00 each a month. Looked it up and they
Were the same, just different brands . Same side effects, one of them the chest tightness n difficulty breathing which has really put me in bad shape. I didn't fill them ...not only do I not have that kind of money...I can't live with the side effects! I am using my Spiriva and will be getting ready to order from ADC.
Wow I really have some rants ...sorry so long. I went back to having that awful chest tightness but not near as bad since quitting the Albuterol and Advair.
Can't do much and very angry about that. I am suppose to go to Costco 45 miles away with my daughter tomorrow. I really doubt I can do it.
After having the PFT with a Fev 1 of 32% last fall I got very sick. Not sure what was wrong. It could have been a combination of no sleep, not eating much, plus a reaction to the Albuterol. Bacteria from the test equipment?
Some of you may know I had a planned trip to London then train to Paris. I went even though I was not well. I had finally gotten them to get me portable O2 ..borrowed some money for Respironics simply go plus about 9 batteries some I bought on eBay.
Good thing I was pushed for it as my O2 plummeted to low 80's in the air.
The pulmonologist and his PCP both didn't think I needed it. The first 2 days I was so out of it. We had tickets on day 2 for Train to Paris but I was usually out of it. They rented me a wheelchair. I don't remember much of the flight over, the train to Paris, or the day in Paris. I couldn't hardly walk.
I had taken some Ativan but only 1-.05 mg a day. The day of the flight I took one every 12 hours. So maybe that plus no sleep? But then my breathing was very labored. Anyway I can't believe the PCP who had told me to throw away the oximter! I am so untrusting of Drs and the medical field! I am better but have to use O2 on exertion. And at night of course
Had a cat scan but they didn't call so assumed it was negative. Had my reg Dr look at the chart and he said it was clear.
I had an echo with bubble test on my heart. Shows hole in heart which isn't that uncommon but with Atrial Defect. They want to do an angiogram to see if hole needs closed or if I have Pulmonary Hypertension. So far I have refused to schedule it.
I am tired of Drs right now. I quit my Advair and Albuterol and felt much better. When I told Dr he just sounded like a robot asking me for how long I have felt worse? I just told him I was better! He still prescribed 2 different inhalers that my part D doesn't cover, each about 250.00 each a month. Looked it up and they
Were the same, just different brands . Same side effects, one of them the chest tightness n difficulty breathing which has really put me in bad shape. I didn't fill them ...not only do I not have that kind of money...I can't live with the side effects! I am using my Spiriva and will be getting ready to order from ADC.
Wow I really have some rants ...sorry so long. I went back to having that awful chest tightness but not near as bad since quitting the Albuterol and Advair.
Can't do much and very angry about that. I am suppose to go to Costco 45 miles away with my daughter tomorrow. I really doubt I can do it.
Perhaps you can find another doc besides robot doctor? I know when I go and my dad goes we both have lots of questions that require the doctor to be mentally "there", in fact its essential to good care. I had a bad reaction to one of the inhalers you mentioned, Advair I think. It made my heart race so my doc took me off of it. My dad uses Spiriva also and Pulmicort. I used to use Pulmicort but my doc changed it to the new Dulera. I like it better, helps with the coughing.
Yea $250 is ridiculous, I wouldn't be able to pay for that either. Do you have supplemental coverage? Sometimes that will cover what Medicare won't, its so confusing so you would want to ask them before signing up.
Also, do not throw out the pulse oximiter, we both use it and it shows when we are headed towards an attack.
Hope you are doing better and can go to Costco.
I haven't bought a supplement. Just Humana for Part D. I don't think very many companies cover much on inhalers anymore. Seems from what searching I did they would still be spendy. But honestly every time I try to go back on Albuterol or Advair I have a terrible time breathing.
I really liked this Doctor but starting to wonder. When asking about symptoms he reads from questionnaires on the computer.
Oh no I would never throw out my Oximeter ..I really like it for the treadmill. I think that PCP was nuts lol
Does it help to talk with your daughter. Wish I had one of those!
She may have a good take on some of this even if she is your kid.
I'm sorry to hear you are having such a hard time.
that is a lot of elevation changes between 8,000 ft flying & then down to almost sea level! then with jet lag, WOW! that must have been hard on your system.
i don't think people think about just how high, even with pressurized cabins, aircraft is, but your dr's should have known better!
i did that trip when i was 20 years old & i slept for 2 days upon my arrival= so not an easy trip for someone on 02!
glad you are back safe now.
so glad you kept your oximeter!!! sounds like maybe it's time to toss that dr!
as for meds, i also do well on spiriva. i have albuterol, but never use it as it makes me so shaky & dosn't seem to help my breathing at all.
what works good for one person may not work for another, so stick with what works (and yes, the cost is horrid, and if you find a "Part D" that says they cover the expense, then we get "the donut hole"= gotta love who ever invented Part D--lord is it confusing!)
i'm glad you got to "rant"; many of us can relate (((HUGS)))
i'm curious; your CT scans were "negative" and "all clear"???
it must have shown your emphy and any other lung problems you have--with a fev1 of 32% a CT should at least show the emphy= so that is weird (in my opinion)
did you know that you can get a copy of the radiologists report & read it yourself? i do.
you can also have the right to get a disc of the CT & the report to go get another opinion if you so decide.
i'm rambling now, but a bad dr did me lots of harm years ago & i learned the hard way to get 2nd (or 3rd) opinions.
my thoughts and prayers are with you.
welcome home!
I should go back to pulmonologist but why can't they call me and talk to Me? . Maybe I will just call them and demand more input. I am very very tired of Dr visits right now lol
I hate most that they keep you coming back all the time but you have to ASK for answers by going Back all the time lol well I am still ranting
each HRCT i've had since then they measure those (and mine grow).
my HRCT showed lots of intersting things so that is where i didn't understand how a ct scan could be "negative" when it would show your emphy at least.
i understand now, they are just saying "no changes" since your last one.
(me & terminology=my poor dr gets "quizzed" until he speaks in terms i "get" LOL)
as for the air trapping, i guess it is a emphy thing & thats what causes us hyperinflated lungs. i didn't realize that ALL emphy AND asthma does this.
it was interesting to look up on a quiet sunday afternoon :)
http://breathinstephen.com/air-trapping/
when i have had hrct's done the my dr pulls them up on his computer & shows me everything & explains it all, so i was kind of surprised you didn't have a follow up visit to show you it & go over it with your dr.
i have a dr app coming soon & i understand having to "ask for answers"---its hard to figure out what to ask!
that is why i suggested getting a copy of your tests results---i often don't understand or i forget just what a dr says so i can go online & research some things :)
sorry you are having to see dr's so much! this will be my 1st time seeing a Pulm in almost 2 years LOL
This was my first Cat Scan. I guess my main worry was looking for cancer but I assume they found nothing like that or would have told me it was urgent to come in.
I am just pouting because since I got insurance last year and then Medicare in Oct I have been to Drs 2-3 times a month. And that doesn't include the Osteopathic surgeon they wanted me to go to.
While I want adequate health care it has just been too much lol.
I will be sure to call and schedule follow up with pulmonologist. Once a year or even twice a year will be so much better...hopefully that will soon be adequate!