Really Worried

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I've been diagnosed with mild/moderate emphysema, after taking pft test. Had an exacerbation for the first time, which scared me to so bad.

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14 Replies

  • Posted

    Hello Rita

    That would be very scary.

    What medications are you on Rita?

    And what did  you do to try and stop the exacerbation?

    Lill

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    • Posted

      Hello Lill

      Right nowonly on combivent inhaler and prednisone, since having the exacerbation last week, dr. wants to start me on smybicort, here it is so expensive 325. My insurance doesn't want to pay any on it, so trying to find alterative. My anxiety is so high right now, and so worried.

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    • Posted

      Sorry I didn't finish, the day after I had the pft test,  I couldn't take deep breath and chest starting hurting, time I got to e.r. I couldn't breathe oxygen level was down to 80% and hr was 127. the hospital dr. said it was an exacerbation, so I was put on predinisone and inhaler
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    • Posted

      Rita

      It is a worrisome thing, to have confusion about this, I understand.

      And anxiety and worry contribute to more difficulty too...it's difficult not to worry though...

      Symbicort can be very helpful in reducing the inflammation in the airway and allows more 'room'   It is made to work over several hours, and over time. It isn't for a 'hurry up' effort but works over the hours and days to keep the swelling at bay and that is how it will assist the breathing.

      If you are able, in any manner, to afford this, it likely could be a great benefit. Shame your insurance is balking at it... The inhaler has enough doses to do for a long while as well...It comes in two different strengths and one has 60 doses and the other 120.

      Even if you could give it a try on one effort and see how things are for you, you could at least know if it is going to help you. Being able to breathe well is tantamount, and if your condition improves with this, it would go a long way to relieving your anxiety.

      However, if the cost is not surmountable, there are alternatives and your physician would need to approve it.

      Did you think the exacerbation was more related to your anxiety rather than infection or another trigger?

      Please Rita, we all will do our best to help you. It is great you are here on this board and can reach out to us!!

      Things can improve Rita and they will...getting the proper medications and taking them as directed can go a LONG way to improving things!!

      Do not be discouraged Rita  (smile)

      Lill

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    • Posted

      Thank you Lill,

      I think maybe you are right about my anxiety having alot to do with it, my dr. said she will try and get free samples of symbicort for me, to try. Thanks again Lill, for your support

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    • Posted

      Hi Rita so sorry for your diagnosis and experience, its difficult to deal with emotionally when first diagnosed, many patients with COPD feel very anxious and upset, concerned and worried.  You are living in the US from what you mention about your insurance not wanting to pay for the symbicort med. 

      Can I suggest a couple of things to you that may provide you with some possible help that applies to you in the US.  You may know already but in case you don't...

      Do check the American Lung Association website, in the search box put Better Breathing, 1. there is a pdf leaflet for download called Better Breathing with COPD, further down on the search results, look at no. 6 and no. 7 which you may be able to access in your area, also do another search on the American Lung association website and this time put in Better Breathers followed by your location, there could be a local group running that may be of help to you.

      Pulmonary rehabilitation if you can access a course highly recommend this, if you can't access one do try and read all you can about it, what's recommended from the lung usa site.

      Check out you tube for Lung Exercises: How and why we breathe by Donna Wilson who is a pulmonary clinical nurse specialist, she has a lot of lung exercises that many have found very helpful.

      Also the people on the DS site (daily strength) have a very large community for all health conditions, the COPD forum there have many people that can advise you about any grants you may be able to access and you may even hook up with someone living in your area.  

      Wishing you all the very best Rita.  Take good care of yourself.

      regards V

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    • Posted

      Most welcomed Rita!

      Let us know how things are there as you are able.

      Nice to hear from you

      Lill

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    • Posted

      Most welcomed Rita!

      Let us know how things are there as you are able.

      Nice to hear from you

      Lill

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    • Posted

      Just got back from Drs. She got me two symbicort samples, 60 doses each.Now I can try it.

                           Rita

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    • Posted

      Great news Rita.

      I hope someone has given you instructions on how to use it. You can also look it up and read on the computer.

      (exhale as much air as you can, then put between lips and inhale as strongly as you can, try to hold in a bit and then breathe again)

      Also, be mindful, you are advised to rinse your mouth with water and spit out, after each session.

      Let me know how it goes, if  you like and please try to rest some until things are more settled.

      Lill

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    • Posted

      Great reply Vee.  I would also add to that though,   the British Lung Foundation site.  It is based in the UK but is available to anyone whatever their country.  It is a very good site and there are a number of overseas people on it.   Bev x
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    • Posted

      Be VERY careful about rinsing your mouth THOROUGHLY after each use and spitting the rinse water out, DON'T SWALLOW IT ...... the alternative is thrush, first in your mouth and then through your entire body!
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  • Posted

    I don't know of anyone who's not scared when first diagnosed or has an exacerbation for the first time, but you need to remember that this condition is manageable with the appropriate medication and breathing techniques.

    If you have access to a pulmonary rehab group I can't recommend them too highly.

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    • Posted

      Thank you . I will try to find out if we have a group around. On medications, is anyone taking combivent and symbicort? 
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