4 weeks of breathing problems

Have had copd for years but diagnosed with emphysema 4 weeks ago after being treated for what was thought to be allergies, asthma, bronchitis, then xrayed and diagnosed with emphysema. Using nebulizer, albuterol, astilin, musinex, claritin (also tried zyrtex, loratadine, etc), flonase, qnasl, 4 weeks of steroids (40mg day), vaporizor 24/7, diffuser with Breathe essential oils, hot teas with local honey and lemon. been to my general doctor 5 times in the 4 weeks and the emergency room once. My doctor will not give me a referral to pulmonologist (which is required here in the US on medicare) saying I am not at that stage. But the wheezing is upon exhalation, occurs 1-2 times per day even with all the meds taken. Walking only in the house which has purification system. Confined to my bedroom mostly. Very tired. No fever. No mucus. Saw doctor 4 days ago and he said I had improved significantly but 5 hours later had another asthma attack and this has continued off and on since. Should I not see a pulmonologist? Suggestions?

11 Replies

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  • I'd like to suggest finding a new doctor. Your health is your most important asset.

  • Hi Magwil49, what was you diagnosed with for copd ?

    yes emphysema can be seen by xray, but have you been tested to see what your lung function is ? your doctor says your not at that stage, what stage is that ?

    sorry for the questions when you seem to be stressed and wanting answers.

    others will be waking up in a few hours and will know more on the medicine you are taking..be more helpful.

  • The other posters have made good points, Magwil49. Your general doctor should be able to tell you what stage you are, after doing a spirometry test, and from that you and he can work out a treatment plan.

    In the UK we have the NICE guidelines for diagnosis and treatment of COPD (which includes emphysema), and I'm sure the USA will have something similar. Take a look at nice.org.uk/guidance/cg101

  • If he won't refer you, I don't know, can you see another doctor and get second opinion and referral if needed?

    I never heard of someone NOT referring for emphysema.

  • Thanks for the replies. I was not told a stage, did not have a spirometry test. The copd was found starting 10 years ago with some simple tests but since I never smoked I assumed it was an error. My parents both died early of emphysema and when I had a breathing attack over 4 weeks ago, I was told the xray showed the bottom part of my lungs "blew" out and I would never get that back. I am still on bedrest because my heart got enlarged when I couldn't breathe for several days and so they will do a stress test soon (on a waiting list). Then I am supposed to exercise enough to postpone the progression of the emphysema. At its worst, the doctor wanted me to be in the hospital for 5 days but since I have little immune system (from chemo and colonized staph), I knew the dangers and requested to be cared for at home. The hospitals check on you but also are full of germs and at home I have a vaporizer, diffuser, nebulizer, so much more than at the hospital. I also have IV problems and they cause me staph infections. So I am trying to stay out. Still, with all the meds, I am having the wheezing and coughing. Blood tests show things are ok except for White Blood cells which are very elevated but that is because of the steroids. I also can't take antibiotics but there is no sign on any infection. I have no mucus or drainage. I am looking for another doctor, but the medical care for seniors here is very different than in England since we lost our privatized system. We haven't quite figured out how to be such a large country and make socialized medicine work like the UK which is great. Not complaining about the system, just saying why there are complications. In addition, many of the meds I am prescribed are not covered because they are not generic and I have to pay cash for them or a very high copay. Today I will look for an asthma/immunologist. I have requested a pulmonary doctor again but that is up to my general doctor. I will also find out why I was not given breathing tests you mention. My oxygen is doing better now at 95 and maybe that is why I don't qualify. I do have the actual xrays and paperwork showing the emphysema. My Blood Pressure is also very high (I usually have low pressure) but that is from the coughing. I do appreciate your responses. I feel like I get more info on the blog than from my doctor. thanks again.

  • I wouldberequesting either a 2nd opinion or a referral, both of which you are entitled to do, good luck 😄 .

  • In the US medicare system, you can't see pulmonologist without a certain stage. I have an apt in 10 days for a new doctor to get a second opinion. A long time to wait. I bought equipment for home use and am safe. But I would like to resolve this chronic thing.

  • Hello again! I also live in the U.S. While I personally favor this forum there is a lung disease forum that's based in the USA and sponsored by the American Lung Association, inspire.com living with copd. There are a few members who have great knowledge about the issues you've mentioned that the people in the UK just don't know because we each have unique systems that differ greatly. You may want to give it go. I do hope you find the information and help you are looking for 😊

  • wow grannyk3, thanks so much for taking the time!

  • You're very welcome, Magwil49. That's what we're here for!

  • How well do I feel your pain. I went through almost the same thing six years ago with my copd. They said that is was also emphysema for like 3 months, yet I kept going to the hospital for shortness of breath, they were saying phenomonia every time I went, like every week, until finally they bought in a specialist from out of town and that's how I found out I had copd, but if your doctor does not get you the things that you need then call your insurance company and see what doctor in your area is better to treat you for the things that you need. This is a very serious thing and it should be treated as such. I hope this has helped you.

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