Severe breathlessness

[Daisybarnes]

I had robotic surgery upper right lobectomy in June this year. Initially I made a good recovery and after about 2 months was experiencing hardly any breathlessness. However after about 4 months I have become extremely breathless on the slightest exertion eg getting up or talking. This seems to be getting worse not better. I am undergoing extensive tests but specialists so far are baffled as to what is causing this problem. I was previously very fit. Cycled and walked and cared for grandchildren. Just wondered if anyone else has suffered in a similar way. Thank you

[foodbankcupar]

After three bouts of Bronchitis in about four months During treatment with an experimental trial drug at Beatson in Glasgow I had the experience of extreme breathlessness.I withdrew from the programme and had a fairly quick recovery.

Had to sit after every hundred yards or so.

After stopping I recovered.

Kevin

[Daisybarnes in reply to foodbankcupar]

Thanks for your reply

[JanetteR57]

I initially recovered well from my open surgery in Dec 2010 and resumed swimming in March 2011 which helped me redevelop my lungs. however inclines and stairs proved difficult as still had wheezing and breathlessness - investigations with bronchoscopy showed inflammation at the surgical stump site. over time it improved but then hit with a raft of chest infections between 2015 and 2019 hospitalised at least once a year (pneumonia, pseudomonas, RSV) I was left extremely breathless after the RSV isolation period in Jan 2019. It went on for months with me hardly able to do a thing.... I decided that the only other thing that had changed was I'd been given a different inhaler in the hospital (Fostair) that was impacting my heart rhythm as well so decided I'd stop it for 2 weeks (was taking it every morning) as I was due to see the respiratory consultant. He agreed to me reverting to my previous inhaler (symbicort) and the heart issues stopped. my breathing struggled to return to normal and after a raft of different tests including on exercise bikes with stethoscope listening to my throat and chest/lungs, it was determined I had inducible laryngeal obstruction (previously known as vocal cord function) and was breathing dysfunctionally using my upper chest/neck/intercostal muscles rather than diaphragmatic breathing through my lungs. Appointments with respiratory physiotherapist and speech and language therapist told me to do do various breathing exercises to try and 'relearn' how to breathe properly. Due to the pandemic my swimming frequency and distance reduced considerably but I am now able to breathe through my diaphragm rather than all shallow breathing. My consultant (surgeon) referred me to a respiratory consultant to get the various tests underway as there is a limit a surgeon can do once they've resected the tumour/lung. Worth asking if you can be referred by your surgeon if you don't already see a respiratory consultant. it took many months of waiting and testing to see somebody but at least gave me some answers.

In the meantime, there are exercises online with Asthma & lung UK (formerly BLF) and Roy Castle lung cancer foundation that may help you retrain your breathing and see if it helps you... good luck with your continued recovery.

[Daisybarnes in reply to JanetteR57]

Thank you so much for your response and the detail of your pathway. There are many points that could be relevant to my situation I am sure. I am lucky in that tests are being carried out and I am under an excellent respiratory team. Only just beginning to investigate the upper airways which is where I feel the problem may lay. Thank you again for taking the time to reply.

[Leniko]

did they check your hemoglobin?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Daisybarnes,

Some excellent information above, as always if you feel any symptom is becoming worse it is always important to get examined by medical staff, often it can be caused by something simple that is an easy fix. It is good to hear that you have confidence in your team and that they are moving forward with further investigations.

If you wish to discuss anything in more detail, then you can call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600 or you can email us at [e-mail]

kind regards

Roy Castle Helpline