Ongoing breathlessness and exhaustion

[Daisybarnes]

I am really hoping someone may have experienced the same symptoms as me and managed to get a diagnosis. Upper right lobectomy in June last year. Initially did very well and was approaching a good level of fitness. Since October/November I have experienced increasing breathlessness, absolute exhaustion and some lightheadedness/dizziness when I become breathless. I have had CT scans MRI scans Heart Echos 24 hour ECG monitors and a cardio CT. However no cause has come to light. I sleep much more than I used to, wake up feeling great but am exhausted as soon as I get up and go downstairs. I was previously very fit for my age (73) and now virtually sedentary. Has anyone experienced Pulmonary Hypertension? The symptoms seem to fit but this would mean a referral to a specialist unit. I would be so grateful to hear from anyone who has experienced similar symptoms. Many thanks.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

I am sorry to hear you are experiencing increasing breathlessness more than 6 months post lobectomy. As you have suggested there may be other causes for your breathlessness such as pulmonary hypertension, despite having investigations in Oct / Nov that didnot lead to a diagnosis . I would suggest that you discuss your ongoing symptoms with your GP or respiratory consultant . As I am sure you are aware a lobectomy reduces lung capacity and could be the cause some of your symptoms . Your GP maybe able to refer you to a physiotherapist who could help maximise the efficiency of the lung capacity that you have .I have included other sources of information and support

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/

The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical, financial and emotional support; maggies.org/

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

[Unicorn3344]

Hi Daisy sorry to hear you are having so many problems.My husband had upper right lobectomy in August 2021 and he is experiencing all the symptoms you have mentioned.He is actually in remission and cancer free now after surgery and chemotherapy.However he has COPD and peripheral vascular disease so that is the cause of his breathlessness and fitness levels.He has been referred by his GP to the rocket team and starts a course of physiotherapy next week twice a week for 6 weeks.It’s not a cure but hopefully they will help him to manage his symptoms and understand them better as we have just been hoping the exhaustion and dizziness would pass.He seen his Gp last week and he has prescribed him a new inhaler with steroids and also told him to stop taking his blood pressure tablets which has definitely made a difference.He is seeing his GP again today to discuss how he is getting on which is a great relief to know that at least they are monitoring him now and when he goes for his physiotherapy nest week he will meet other people with the same symptoms which I think will be good for him.I feel so helpless watching him struggle but try to encourage him as much as I can .I don’t know if you have any other health issues and of course everyone is different but I would write down any questions you have and make an appointment with your oncologist or even your GP to discuss what treatment you will need .I sincerely hope you get some help in improving your symptoms.Whatever you do do not suffer in silence as the not knowing only makes you more anxious .There are plenty of options to speak with someone from RoyCastle helpline and Macmillan team .Wishing you all the best x

[Daisybarnes in reply to Unicorn3344]

Thank you so much for taking the time to reply. Fortunately I don't have any other health issues so feel hopeful I can return to my old self or at least somewhere near one day. Best wishes for you and your husband. I do hope his health can improve.

[Sixtygirl in reply to Daisybarnes]

Hi Daisy I'm the same at the moment just cannot remember the last time I had a decent 🌃 sleep but been told it's my COPD that's effectively causing the breathing problems so even going to the toilet takes my breath away. So I'm now using my oxygen we need all the help we can get out there best of luck xxxx

[JanetteR57]

Sorry to read of your ongoing symptoms that are very wearing and debilitating.

After my lobectomy I initially recovered well and once I resumed my swimming albeit slowly as had left it 6 months since previous swim so painful to start with, I regained a lot of lung function. About 12-18 months after surgery I was doing really well with swimming and if walking on the level but on stairs/steps/incline was really struggling. My consultant said I was an 'enigma' and I had various tests but nothing found.

Between 2015 and 2019 I was hospitalised every year with a nasty chest infection of one sort of another (pneumonia, pseudomonas, RSV) and each impaired my breathing more.... and the tiredness was beyond description - waking up exhausted and no energy. I was eventually referred by my consultant to an asthma specialist to investigate although all allergy/breathing tests had shown I no longer had asthma (I'd had childhood and early adult asthma and my initial LC diagnosis was misdiagnosed as uncontrolled asthma despite being nothing like any asthma I'd had - then 7cm tumour and upper left lobe removed/LC diagnosis.

I underwent quite a lot of tests including on an exercise bike whilst they listened to my neck, chest, upper chest and concluded that I was breathing dysfunctionally through my upper chest and neck and not using my diaphragm at all to breathe. This meant I was breathing very shallowly and not getting enough oxygen to help my circulation, increasing my tiredness. I was referred to a speech and language therapist and respiratory physiotherapist and diagnosed as having ILO (inducible laryngeal obstruction previously called vocal cord dysfunction). It was suggested the surgery could have contributed but when they learnt how long ago it was, and how recently I'd had bronchoscopies, they suggested that may have prompted me to change my breathing pattern. My vocal cords kept shutting off preventing me from breathing and also losing my voice.

I was prescribed a whole lot of breathing techniques and exercises and having seen the two professionals just twice, the pandemic hit so appointments converted to a phone call (not very helpful) then the physiotherapist advised she was being moved on to long covid clinics so I was discharged, advised I could do all the exercises by myself, using their advice and online resources. I have retrained my breathing and can now 'belly breathe' but another chest infection in December has resulted in the familiar fatigue I experience with such bouts.

It can feel counter intuitive when we're so tired but doing something physical - a gentle walk to start with or swim can help the lungs change their breathing habit on exertion and recover a different rhythm.... fitness is easily lost and we become de-conditioned and it takes a long time to rebuild. I notice such a difference in my energy/fatigue levels if I simply sit around all day (working on the computer) compared to when I manage to find time to go for a swim. I also find some physical activity helps me sleep more deeply too.

The physiotherapist suggested websites including this one, yoga with Adriene and others I often signpost to are those on Roy Castle foundation website (living with LC - symptoms breathlessness page) or Asthma & Lung UK pages for activities to undertake by those with respiratory conditions... hope these help.... good luck. physiotherapyforbpd.org.uk/...

[Daisybarnes in reply to JanetteR57]

Thank you so much for your detailed response. There seem to be a lot of similarities there. I will look forward to meeting the physios and hopefully improving my breathing techniques and maybe getting back into some walking and cycling that we really enjoy. That has been so helpful. Thank you again