Where are you from ?: Good morning to all... I... - COPD Friends

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Where are you from ?

55-61sept-33 profile image
32 Replies

Good morning to all...

I'm very curious about where everyone is from ?

Also do you feel you are getting the proper care from your doctor ?

I live in the United States, Illinois.

I don't believe I'm getting the proper care for my COPD. My Pulmonary doctor has kept me on the same medication for several years. Everytime I mention changing them he totally ignored the conversation.

I guess I'm just frustrated with our Healthcare system it seems to me that less doctors care and we have no say over our own Healthcare.

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55-61sept-33 profile image
55-61sept-33
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32 Replies
rubyred777 profile image
rubyred777

Good morning 55-, I live in New Jersey. I use qvar, as needed and Ventolin, if needed. Don't really use them, unless I'm sick. I have moderate copd. Haven't seen a pulmonary Dr. for a yr. an a half. Have to get a new one, due to insurance. My regular Dr. Is good, and listens to all my suggestions. What stage are you? Do you feel your medications aren't helping you? Ruby🌹

55-61sept-33 profile image
55-61sept-33 in reply to rubyred777

@ rubyred,

Hello there ,

I'm at severe level. On oxygen while sleeping and with activity.

Medication list : Spiriva, Symbicort, ProVentil, Nebulizer, Daliresp ( roflumilast tablets ). I was taking Theophylline but apparently they stopped making the 200 mg tablets and all our pharmacies in my area went on back order August 2016 and my insurance at that time would only help cover the tablet and not the capsule.

I feel my meds are not working as good as they use to

rubyred777 profile image
rubyred777 in reply to 55-61sept-33

Can't you get a different Dr.? If you don't feel your inhalers are working well, a good Dr. would try something different. You have to be assertive, and take up for yourself. I'll be getting a new pulmonary Dr. soon. I'll see how that works out for me. I have a lot of other issues, I'm dealing with right now. Breathing is okay. 🌸🌼

55-61sept-33 profile image
55-61sept-33 in reply to rubyred777

@ Ruby red

I'm pretty sure I will have to find a different Pulmonary doctor however we don't have a lot to choose from. I'm not that assertive I usually sit back and do what my doctor tells me to do ,

I hope you find someone who cares about your health issues that's a lot of the trouble around here...Is finding a good doctor !

I wish you well Rubyred and hope everything works out for you. ,,😇

shadow4me profile image
shadow4me

I am severe copd I'm from the uk .I have Spiriva Fostair salamol and carbosteine .I am not impressed with the care I get at the moment x

55-61sept-33 profile image
55-61sept-33 in reply to shadow4me

shadow4me ... Hello to the UK !

I guess we all have to be our own advocate in this type of situation.

Just so frustrating with the lack of care and concern from the medical field... It has all ways been said.." the better insurance the better care "

I wish you well and better days ahead 😇

I'm from Scotland and our health system is at breaking point I don't feel that we get the level of care that other areas get and certainly don't have access to a lot of the innovations and technologies that are available in other countries, I think in part this is due to our national health service where I feel you get a reasonable basic healthcare but anything that costs too much we don't have access to well that's my experience at least not saying that is how everyone feels.Nice to read your post.All the best.x

shadow4me profile image
shadow4me in reply to

Totally agree I have read that niece are wanting to stop our steroid preventer inhalers if you have copd now ? Im severe I cant even get the med for a neubiliser and steroids are being slowly stopped lol .Soon I think that us in the UK with copd will be just left to suffer

Dgtheel profile image
Dgtheel

I live in Oregon, and yes I feel not getting treated correctly by pulmonary dr. asks same questions, ignores my questions, at 1 appointment he said I shouldn't be taking two of my meds. together, but didn't change anything, every time I ask about that conversation he doesn't respond. But their group is only one here, but my primary dr. is great, she'll follow through on what I need.

Snop67 profile image
Snop67

I feel the same way about my pulmoligist. Feel much better with go he listens I'm from nj

LORBIC profile image
LORBIC

Hi 55-61, I'm from New Hamsphire but I see a pulmonary doctor in Vermont. He is really good and anytime I feel like my meds aren't working, we talk about the different ones and then we choose which one I will try next. I was on Symbicort but found it didn't work for me so I'm now on Tudorza pressair. I also use Combivent Respimat and Dulera inhalers and Daliresp. DR. told me that daliresp is easier on the heart then theophyline is.

Find yourself a doctor that will allow you to have some say in your care, a lot now realize that is the way to get the best care for the patient. I don't have money to waste on drugs that don't work and I make sure the doctor understands I have limited $$ and have to make the most of what I have. Just remember you are always the one in control of your body and what goes in it, any doctor who can't respect that needs to be replaced.

Keep us posted on how your doing.

Linda47715 profile image
Linda47715

I am almost a neighbor of yours. I live in Indiana. I have quit my pulmonary doctor. I liked him but all he did was have me come in every 6 months. While there I filled out forms rating my breathing on a scale from 1-10. He also had been my sleep doctor so I had to rate that on a scale also. He reviewed my meds and that was it. He told me to call his office if I got sick but by the time he returned my calls a couple of days later I would already be in the hospital. Here you see the hospital doctors when in the hospital. I talked with my family doctor and we agreed that I would call him. I am on Advair, Spiriva. HandiHaler and ProairHFA. I do not need the rescue inhaler everyday. I do breathing treatment just as needed. I guess my meds work ok right now. I have not been in hospital since June. I was in also in March and December before that. So I am doing better but I have been staying a way from crowds.. I seem to pick up sickness from people. I hope you find some one. For me right now I am depending on my family doctor. Best of luck neighbor.

valeriejean profile image
valeriejean in reply to Linda47715

I'm surprised you only use your breathing treatment as needed. If you are meaning a nebulizer I have to take mine every twelve hours, Brovana & Budesonide . If I have having labored breathing I have to do an additonal neb every four hours.

mysmugcat profile image
mysmugcat

Hi my partner has COPD he is happy with the service, his is quite mild, he has speriva? Spelling?

shadow4me profile image
shadow4me in reply to mysmugcat

Lets hope he can stay mild if you are in UK on NHS its a postcode lottery xx

mysmugcat profile image
mysmugcat in reply to shadow4me

Ouch ok ty

PSchnake profile image
PSchnake

Hi, I'm from Luling, LA. I am still in the middle of researching this thing we call COPD, so it's too early for me to comment about my care from the Pulmonoligist. My husband is from Centralia, Illinois.

Pinkdrink1 profile image
Pinkdrink1

I'm recently diagnosed (last 6 months) but realize I like most of us went years denying the problem and just getting treated for bronchitis- my doctor is very responsive and wants me to know as much as I can about maintenance and when to head to the doctor -- I just had my first crisis where I was hospitalized -- very scary and now I am trying to get my strength back -- patience is not my best trait!! My maintenance is Symbicort and Tudorza and Claritin and Musanix daily -- rescue inhalers and/or nebulizer as needed (if I'm home I much prefer the nebulizer) -- I have added Charlettes Web to my evening meds to make sure I relax and get a good night's sleep -- taking a look at the nucleric acid info that was recently posted -- I'm a big believer in alternItive meds

I'm in California

1john420 profile image
1john420 in reply to Pinkdrink1

Any name with citrus or piney taste/flavor terpenes

Linda47715 profile image
Linda47715 in reply to Pinkdrink1

It usually takes me 2-3 months to get back to speed. I agree that it takes soooo much patience to do it.

VinnieTheSnake profile image
VinnieTheSnake

I'm in Southern California. Had a great pulmo doc, but he moved. Saw a "quacky" pulmo for two years who did nothing for me except add Tudorza to my regimine. Really like Tudorza.

Finally found my original pulmo doc and he's trying to get me either a double lung transplant or lung volume reduction. Sure wish I'd had him all along. Know I'd feel better now if I had.

1john420 profile image
1john420

I am in tennessee USA just started my 60 the winter diagnosed with copd about 2005 inhalers Spiriva and about 14 other drugs prescribed med school . VA been my Healthcare provider. End stage they say I say not today!

I live in Illinois and think my docs are great. Also, I'm considering Lung Volume Reduction Surgery and the dice there (Northwestern Hospital) are into research.

BgertieH profile image
BgertieH

I live in southern Oregon, at 4200' elevation! I have Doctors that I consider to be excellent in their care of and for me! Between my internist and cardiologist, they keep me up and running. Sorry you are not connecting well with your pulmonologist. Is there more than one in your area that your primary care physician could refer you to?

H2o1511 profile image
H2o1511

From southeast alaska. / off grid. We have no pulmo's in my area, a visiting one in the largest city near. Saw him 3 years ago, he had not even looked at my history...however charged me 367$. Had exacerbation Jan. 2016 visiting mom in Washington, took 3 trips to emergency to be admitted with 81% oxy, it was very scary ! I Feel somewhat COPD/ emphysema is a non compassionate disease in some clinical atmospheres,,, sadly.

I was dx'd 2012 severe, take Spiriva , Flovent, Ventolin,,,had slight symptoms I thought was heart related 6 months before dx, hit me like a ton of bricks ! Worked on a a commercial fishing vessel,,not anymore, looking to new avenues, life changes. 😊

shadow4me profile image
shadow4me

Im UK due to NHS in crisis and you cant afford private doctor a lot of us are suffering cuts x

shadow4me profile image
shadow4me in reply to shadow4me

Sorry gave you two replys lol x

Gary12345 profile image
Gary12345

My pulmonary doctor says breath in breath out, still not smoking ok see you in 3 months and rights out a script for what ever type inhaler I ask for. I know there's no cure, but it feels like such a rip off so I stopped seeing him. My family doctor can do the same thing.

55-61sept-33 profile image
55-61sept-33 in reply to Gary12345

Gary12345

I have been thinking the same about turning everything over to my primary physician.

She is young and studying about COPD and all that goes with it. I see her next week so I will be discussing this with her.

I believe my pulmonary doctor just has way to much on his professional level to properly take care of his patients.

Gary12345 profile image
Gary12345 in reply to 55-61sept-33

After switching to my primary care doctor the first thing he did was send me for a chest X-ray and a breathing test, something the pulmonary Doctor never did in 3 years. You can't truly know what's going on by just a breath in and out and a prescription. He would only give out 3 Months of a prescription at a time so you had to go see him. He made me feel like I was just an insurance check to him.

Hay133 profile image
Hay133

Hi im hayley from birmingham doctors seem very black and white about things you need to tell them you want to change meds

Gary12345 profile image
Gary12345

I am from Pennsylvania. I am on Medicare which only pays for a couple of Meds, so unless you want to pay huge prices you make the best out of what they offer.

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