KOKO: I am new to this site. Stage... - Lung Conditions C...

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Dee233 profile image
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I am new to this site. Stage 3 copd. Although sob I manage ok. I have also been diagnosed Alpha 1 antitrypsin PiMZ. This means my lungs are more vulnerable to problems . I have never smoked. Seen consultant and off to PR and CT scan ASAP. Could be a candidate for LVRS. Anyone had this op?

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Dee233 profile image
Dee233
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Toci profile image
Toci

healthunlocked.com/search/l...

If you use the link it will show you a list of posts that have discussed this. I hope everything goes well for you.

Dee233 profile image
Dee233 in reply toToci

Thank you to all who have welcomed and also replied to my post.SOB is shortness of breath and PH is an abbreviation Pulmonary Rehabilitation. LVRS is Lung volume reduction surgery.I don't think surgery is a route I wish to follow at the moment.......but the future is another matter!!!

Best wishes to everyone

Titchy52 profile image
Titchy52

Dee233 welcome to the site I'm afraid I'm unable to help but someone will help and answer your questions best wishes x

PastMeBest profile image
PastMeBest

Hi Dee233 just like to welcome you to our forum.

I don't understand what all the abbreviations mean so am in the dark a bit. You do sound like you have quite a positive attitude which I'm sure helps.

Best Wishes.

Regards. John

Heidibutcher profile image
Heidibutcher

Hi Dee and welcome, I have tested positive for Alpha1 Antitrypsin deficiency and recently found out I am pimz too, I am very short of breath all of the time but make sure I walk every day to work, my GP has diagnosed copd based on spirometry in her surgery but am currently under hospital consultant for further tests, my son has just been tested also as he was hospitalised for vasculitis the worse case the hospital have ever seen he's very sob too and only 31, this site is very supportive and the information from experts living with lung disease has really helped me challenge some difficult consultants already,

Best wishes Heidi x

Dee233 profile image
Dee233 in reply toHeidibutcher

Sorry to hear your diagnosis alpha1. So few people are aware of this deficiency and the problems it can cause!

My consultant finds me quite unique as I have never smoked and also never had a proper diagnosis for chest problems even though I have suffered problems since early childhood!

I was , in a way, relieved to put a name to it!!! Your son seems to have had a rough time. Hopefully things are a bit brighter for you now?

Regards DEE

Dedalus profile image
Dedalus

Welcome Dee

piping profile image
piping

Welcome to this site and all the wonderful people on here....you will find many who are an inspiration,many who are very knowledgeable ,those that are helpful,and many just full of kindness.

Jacqs63 profile image
Jacqs63

I am having LVRS tomorrow morning. I had my pre op assessment on Wednesday and asked the anaesthetist about the pain after operation. He advised me that I shouldn't have any as they now do an epidural analgesia. It numbs my upper torso and it helps me to cough and do breathing exercises after the op. They slowly lower the analgesia over the next few days. I am now not so scared!! Once the op is over and I am recovered enough, I will give the forum my honest opinion about how much better my breathing is. In the meantime, I am a bit apprehensive but I think that's normal for any operation - I just can't wait to see how much better my quality of life will be xx

Dee233 profile image
Dee233

Very best wishes for your op and a good recovery. What stage are you at with copd and how long since your diagnosis? I am awaiting more results at the moment from ct scan etc. Which hospital are you in . Good news about the pain relief post op. I am sure you will have a better Q of Life in the future. Keep in touch Dee

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