hubby recently diagnosed emphysema from ct- what next!

[Robinface]

Hi husband had ct scan as part of cancer check and now diagnosed with emphysema! Seeing Gp next week- what should he expect? Referral to respiratory consultant? They been putting his breathlessness down to angina- got angiogram end of september! Does emphysema give you breathlessness on exertion with pain in back? Sorry it came as a shock ! That plus a goitre too! Thanks

[kev60]

Hi, I went through something similar. I had a 2ww for swallowing problem saw an oncologist had various tests and no cancer found but they they found out that I had emphysema (COPD) with 3-4 holes in the top of lungs that was 2017 and nothing happened for about a year. I was then sent a txt by my gp that I was eligible for a free flu jab then they realised that they had forgotten me as I was supposed to have been issued with a inhaler and given an action plan and rescue meds (for flare ups). They also sent me for a chest x-ray and referred me to respiratory clinic. They have since found more holes to the bottom and rear of my lungs. My breathing is ok-ish but can no longer do stairs ( only 2 steps and rest) only had one flare up in the last year , although progressive it is usually slow as far as I know. Just ask lots of questions, it took me a year to find the right inhaler for me so if you feel something is not right let them(gp) know. Hope you get the help you need/ deserve. Kevin

[Robinface in reply to kev60]

Thank you Kevin! Wow what a journey you have been on! Will persist with drs although i imagine they wont want to refer (they never do) , thanks for replying good to know others been on dimilar journey!

[kev60 in reply to Robinface]

That’s ok I like to help if I can, I agree with badbessie you need to get a referral for PR ( pulmonary rehab) . I had a 2 year wait and had a phone consult which went well but 6 months later they offered me a place on rehab and when I got there after they had seen me walk/ stagger in they deemed it to dangerous for both me and them as they didn’t do 1 to 1 sessions. So I would get the ball rolling on that early doors. Good luck. Kevin

[Badbessie]

You should be referred to respiratory specialist who will carry out pulmonary function tests to find out to what degree it affects his breathing. I personally would push for pulmonary rehabilitation which would help educate your husband on his inhaler use and how to manage his condition if he gets a flair up etc. It will also help him with an exercise routine which can help. There are things he can do to help himself. If he smokes the biggest help for emphysema is to stop. Next he needs to watch his weight. You are going to have many questions my advice would be to keep a notebook and as those questions come up make a note of them so you can ask the consultant or COPD nurse etc. The important thing to remember is that emphysema is not a death sentence etc. There is no cure but it can be managed very well. Also there is no such thing as a daft question if there is I have already asked them. Keep asking questions.

[Robinface in reply to Badbessie]

Thank you so much, appreciate your response, still a bit overwhelmed its been a rollercoaster this summer i am not keen on !

[Alberta56]

Welcome to the forum. One thing this forum teaches you is that you have to be persistent in asking for what you need. Lung diseases seem to be the poor relation as far as the medical world is concerned. What you need now is a referral to a respiratory consultant, preferably before winter gets going. With the right medication, inhalers etc. emphysema can be very well managed. Good luck.

[Robinface in reply to Alberta56]

Thank you yes I find you have to be persistent for everything now! Our GP surgery not liking doing referrals so i suspect they will try fob us off with an inhaler without the full story!

[Alberta56 in reply to Robinface]

If they give your husband an inhaler and it doesn't seem to be working for him, go back and ask for a different one. This forum has a number of reports from people who have had to make a fuss to get the right inhaler. But keep plugging away for a referral.

[Robinface in reply to Alberta56]

Thank you

[Loopylorre]

It seems you have already been given lots of good advice, all I can do is echo what others have said & be persistent in wanting what you ask for, their very good at fobbing you off, or at least try to, it is progressive but as others have said not a death sentence either, good luck on your quest for good medical care, a spirometry test is good for telling you how good/bad lung function is, all the best to you both for the future 🌺💐🌷 xx

[Robinface in reply to Loopylorre]

Thank you for your lovely wishes! A spirometry test seems to be what to insist on! Will go armed with info next week, many thanks

[Fibreartist]

I was diagnosed with severe Emphesema 18 mths ago. I have holes throughout my lungs and seem to experience a lot of exacerbations (flare ups). Im currently taking yet another course of steroid tablets and antibiotics. I get breathless easily, especially with the exacerbations. I have just done the pulmonary rehab course and I thoroughly recommend it. They had a respiratory nurse, a physio, an occupational therapist and a dietician there. I had one hour of suitable exercise and one hour of education per session. It was lovely to meet other COPD sufferers too, peer support is great. The point of the exercise is that toned muscles take less oxygen to function, so the fitter you are, the better. I've finished the course now, but am starting a follow on program with under the NERS scheme (National Exercise Referal Scheme) for 16 weeks to follow on with my exercise!

[Robinface]

Update- hi all, saw GP they hadnt had letters from hospital evidently- luckily hubby took a printout of ct scan results. As expected no referrals done - await next ct scan (probably november) as no real symptoms and last chest xrays were fine and showed no issues (2018 & 2021) Gp feels some emphysema to be expected as he smoked a pipe for 30years!! He is getting bloods for thyroid done in a few weeks to check goitre issue! So thank you all x i did get asked if i was medically trained!! 🤣 Think i annoyed him being forthright not meek! Thanks all

[October1961]

Well done, honestly . I have stage 4 empyema and had to struggle to get a lung reduction op it took a change of consultants ,but with the help of my daughter I got there, I felt great after my op and was up to 95%oxygen in my blood ,after 8-9 years of 85 %. Then unfortunately two months later that same lung collapsed and once again I struggled to breathe,today I am going for a lung x-ray as I keep on getting exasperation and needing antibiotics and steroids but one lot doesn't help anymore,my left lung hurts so I am glad I am having an x-ray because if not they would just leave me.😔