I'm Concerned About The Help I'm Not Really Getting | MyCOPDTeam

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I'm Concerned About The Help I'm Not Really Getting

A MyCOPDTeam Member

I have COPD now for little over 3 years. I have many different test done on this.Im on 3 different inhalers now been on since I found out.Right now I think it's getting worse because I can't hardly do nothing without being shortness of breath.Last time I seen the dr I have told him about this and all the things I can't do.Hes telling me my heart sounds good and lungs sound good but yet he says I need to see a regular dr and heart dr.
I didn't say nothing back but each time he tells me he's going yo try a nubilizer and still nothing
What can't understand why all these drs and he saying my heart sounds good.im no dr but don't sound right plus I did tell him I'm not sick.Last time I seen him last year in Oct and he wanted another x-ray which I stop that because he told me before no more test.
So I hate my husband helping me when he works all week.
So any advice will be most welcome. I'm just tired of the run around and not getting the help I really need
Thank you Mary

posted February 10, 2018
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131 replies
A MyCOPDTeam Member

Hi, I am from New Zealand the doctors here had me a Salbutamol and Albuterol as well as the Ultibro Lama. I was literally at the point I could not walk to the bathroom - a matter of 10 feet without being out of breath, exhausted and sometimes shaking. I told my specialist that while I was on prednisone I actually felt a lot better and could cook, shower and do things around the house without feeling absolutely stuffed.
He decided to change my medication to what my new doctor said they should have "started me off on" the Salbutamol and Albuterol were dropped and replaced with Flixotide 2 puffs twice daily and the Ultibro Lama once a day.
This has turned things around for me, my lungs are still only at 28% efficiency but I can do so much more. There are still things I have to avoid like strong perfume smells and cooking fumes but the difference is like night and day. I can now take a shower, go to the bathroom and make my own food without feeling totally exhausted afterwards, my walking distance is increasing all the time. I don't know how many medications you have tried but it can help sometimes if your doctor can think outside the box a little, don't go nuts but if you notice anything that helps you mention it, it may be the cusp of something greater that can help.

posted April 27
A MyCOPDTeam Member

Glad to hear that you are feeling better you are right we got to all be our own advocates take care

posted April 26
A MyCOPDTeam Member

@A MyCOPDTeam Member I know that predizone is a miracle drug for many things and I know personally it allowed me to breath for a goodyear but it also was screwing with my adrenal glands and causing insulin resistance and extremely high glucose as well as thyroid problems .it masked all my body pain I was 100 pounds and I kept getting infections.Because that’s what it does to us .Took a long time to wean off it but I’m off it I’m a normal weight ,I can breath .with other help not steroids .we have to be an advocate for ourselves .That’s what I’m figuring out here so the more info you get you can talk to your Dr coming from knowledge and hopefully we all find a good pulmonologist not easy !

posted April 19 (edited)
A MyCOPDTeam Member

My doctor just wants to throw prednisone at me all the time

posted April 19
A MyCOPDTeam Member

The Ok here’s what you can do ! Ask for a nebulizer and duo neb or other such med to liquid to put in it . It’s bupreosone and albuterol like what’s in inhaled combivent .you can nebulizer as much as like 6 times a day and it lasts longer goes deeper into your lungs . Oxygen is basically to keep are other organs and brain alive so in order to stay strong we need to move muscles ! Walk walking is the best thing one can do without being sick if you can stop and do 2-3 min interval something leg squats jumping arm rolls and leg lung or backward walking ! Be proactive keep learning about what’s available and keep asking or get a second Dr . Stay up to date with shots be around posotive people stop complaining be greatful . We can slow this thing down but pretty sure we’re all going to get worse so be kind .

posted February 28 (edited)
A MyCOPDTeam Member

Well, come spring, or maybe even earlier, I WILL SEE THE PULMONOLOGIST that a friend has reccomended. My primary doctor has made so many errors, scary ones. Once he actually called my pharmacy and cancelled both rescue inhalers. I could go on and on. Then he denies that he did it. He is way too rushed. I deserve a real pulmonologist. I did see one a couple of years ago, who ordered me a nebulizer, that I was grateful for. My primary refused to do that.

posted January 5
A MyCOPDTeam Member

Hi, I have three DRs., heart, lung, and primary. All three say my lungs are clear and good. REALLY, so why do I need to stay on oxygen?????? It's my sternum that gives me a problem. I had a heart operation and I feel they didn't put my sturnum back together correctly. Just had my 1st acupuncture session today and I feel it did help. finally, something seems to be helping. i'm also going for salt treatments too. will, let you know once I try them.

posted December 19, 2022
A MyCOPDTeam Member

@A MyCOPDTeam Member you can ask your Dr or request a lung transplant yourself to see if you qualify . I brought both Zephr and transplant up to mine and he’s soft spoken anyway but he didn’t say much and really went into Hiw they’re tough and not everyone qualifies waiting list afterward immune system I mean he was not encouraging but I’m sure I could go to a city hospital or something . I’m not there yet but just an fyi

posted December 18, 2022
A MyCOPDTeam Member

Boy, one thing for sure, for sure, a lung transplant CURES copd, especially emphysema. If a DR. EVER said the word LUNG TRANSPLANT, to med (no one has), I would be right on that!!! Make them! You must get on a TRANSPLANT LIST, then wait, so get on that list. Make them

posted November 11, 2022
A MyCOPDTeam Member

I feel the same way. All my Dr seems to push on me is a different inhaler. They all give me a sore throat, mucus, cough, and seem to ruin my lungs more. Infact, I took all six different inhalers they tried on me into him and said to put them all in the garage pail and give me something that really helps my lungs and doesn't destroy them more. people, check out the Zephyr Valves on utube. They could really help some of you. Sick of the lung and heart drs. saying my heart looks good and then my lungs look good. I'm now looking into stem cell replacement.

posted October 26, 2022

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