Surgery: Hi...I am new diagnosed Jan... - Lung Conditions C...

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Mummybeck profile image
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Hi...I am new diagnosed Jan severe emphysema at 44, been offered lung volume reduction anyone been through this all new to me, I take no medication, work full time still, get slight breathlessness only, and advice welcome

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Mummybeck profile image
Mummybeck
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11 Replies
2greys profile image
2greys

Try looking through past posts of the same nature :

healthunlocked.com/search/l...

sassy59 profile image
sassy59

Welcome to the forum Mummybeck. Xxxx

Mummybeck profile image
Mummybeck

Thank you had a look but all posts are few years old was just wondering if anyone with more recent experience as these things change so quickly, feeling lucky that I have this opportunity but very scared about it all

frose profile image
frose

I cannot think why surgery would be an option if you are coping without medication! And if you ARE coping without medication then why risk surgery?

O2Trees profile image
O2Trees in reply to frose

I so agree with frose - it was my first thought: why?? Surgery is very risky and generally LVRS is only offered to people who are having problems managing - often when they have major air trapping in the lungs which normally causes much more extreme breathlessness. But you only get slight breathlessness and don't use medication. There's probably other reasons too.

I would want to know why you've been offered this - it's certainly true that you are quite young to be at the severe stage which may be part of the rationale. But you need the full picture before you get involved in making a decision. It's unusual for someone with severe emphysema to be able to manage without medication so I'd say you are doing pretty well right now. You could call the BLF helpline (03000 030 555 office hours) and talk it through with them - they will be able to give you questions to ask your GP/consultant.

Mummybeck profile image
Mummybeck in reply to O2Trees

Thank you think I will ring them tomorrow..

O2Trees profile image
O2Trees in reply to Mummybeck

Nothing to lose Mummybeck :)

Angora profile image
Angora

Hi Mummybeck, I also am a bit surprised that you have been referred for surgery at this stage if you do not take medication. My understanding is that a patient would need to satisfy certain criteria such as age, severity of damage, condition, undertaken pulmonary rehab etc. However, if it is of any assistance to you, I have emphysema stage 4, take bronchodilator medication of two inhalers - Spiriva (via respimat) and Fostair (inhaler) and theophylline pills. I was considered suitable for referral for valves which it transpired would not be possible for me but was excellent candidate for part of lung removal which I had via keyhole in Autumn 2016. The testing process took about 6 months. Not without risk and a scary prospect but I would totally recommend it and I was lucky enough to be treated at Liverpool Heart and Chest. I think it helps if you are totally committed to rehab and self help. Much love and let me know if you have any queries.

Hacienda profile image
Hacienda

Morning & Welcome , I agree with Frose. I am having this Procedure on Thursday and I'm also on the Transplant List. On Oxygen, taking lots of Meds. Hope you get it sorted with an Explanation for you to be offered this . Good Luck. xxx

frose profile image
frose in reply to Hacienda

Wishing you the very best of luck!

Mummybeck profile image
Mummybeck

Thank you all for comments, I have had lots of tests done 2 weeks ago, according to hospital I meet criteria perfect as severe damage to upper left lobe but very mild damage to rest, I gave up smoking day I was diagnosed been doing more walking etc to keep fitness levels good, I still work full time but in school so get lots of holidays, I take no medication and never have only breathless if over exert which is getting better more I do. I worry that having such major surgery will I actually benefit much just awaiting a date which been told should be August but think I need to give this more thought I feel it’s all happened very quickly was only diagnosed on Jan 10th when I was being examined for another thing, now 5 months later I being offered major surgery think I need to step back and think about this...

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