Lobectomy 4 months on

Indian/Nannyto6

That's indeed interesting.  Macmillan and British Lung Foundation (rebadged as Asthma and Lung Uk) have got a good series of exercise videos which Ive found useful and even got my old nintendo wii out. I've also been using the spiroball the hospital gave me. I had got to 2000ml and then dropped to 500ml.  I seem to have a problem breathing from my diaphragm when I'm standing and on the xrays  my diaphragm has moved up quite a bit..  So trying to get some physio to see if can encourage it to move back down.

All the very best to you both take care and hoping you get all the care and support you need to get you well.

Thank you, feel very fortunate though not having to go through what others are in this forum xx

I'm 6 weeks out from surgery and my breathing is mostly fine - certainly no worse than it was prior to surgery.

I'm getting occasional twinges of minor pain now in areas which were previously numb and the scar where my drain was removed is raised, but that's about it.

Hi Lolie, glad to hear your breathing is mostly fine. I had my drain in 4 weeks and the pain varies even 10 weeks on but is  generally improving. Do consider having it checked just to reassure your self it's ok. However despite my best efforts my breathing isn't improving. I wasn't ever struggling to breathe before surgery nor even for the first two weeks.after surgery,  But then suddenly my pain increased and suddenly developed the breathlessness. I am keep exercising and walk a mile each day but some days even seems worse and it's so tiring having to work so hard to breathe and to try and focus on slowing it down all the time as it gets really shallow and rapid whenever I move around. Still waiting for CT results perhaps they'll she'd some light. Hope your pain sees improvements take care of yourself and Thank you for your message.

I've already had my post-op x-ray and seen the report so I know there are no problems, just some minor - and expected - post-op changes.

I was supposed to see my surgeon today but his office rescheduled the appointment until 1 June.  I'm due for a CT scan in July but the current shortage of contrast medium could see that being delayed.

Hope you don't have to wait too long for your CT as those can see so much more than can be identified on x-ray.  Good luck.

Had my post-op follow up with my surgeon and all of the histo results were great.  CT is booked for 4 July and I've finally booked in for an overdue mammogram.

Hi Nannyto6, have you had any improvement ? I was ok initially then suddenly in the 3rd week after surgery I got up one morning and couldn't get my breath when I stood up and tried to walk. It was put down to the chest drain which I had in (4 weeks) since then drain come out but still struggle for breath. Now 3 months on, really feeling fobbed off just keep getting told it's early days, but that fails to consider that my breathing was better in the first two weeks.

Hoping your breathing is improved.

Kind regards

Mash

Hi Mash yeah you sound exactly the same as me  and I was told “it’s early days “ every time I tried to get some answers at my first CT post op it showed I had fluid on the lung but not enough to have it drained?? I am now on a Pulmonary Rehab course which is exercises to help with the breathlessness…I think I have iroved slightly but still can’t walk more than 50 yards before getting breathless  The pains have gone just some twinges now and then but tolerable… just need to be able to walk easily. My next CT is September and hospital appointment November… good luck x

Hi Nannyto6

Thank you so much for your reply, good to know it's not just happening to me though would prefer it didn't happen to anyone. Yes I'm told the same thing. I asked about pulmonary rehab and was told to just keep using the spiroball. I've now pushed for an appointment with the surgeon. I am wondering if the drain tube irritated the phrenic nerve .  If that's is the case the breathing can improve over time. Takes about a year, perhaps a bit longer but at least some light at the end of the tunnel. The change for me was very sudden. Was doing fine for two weeks then got up one morning pain was substantially worse and couldn't even make a cup of tea without getting breathless.

Wishing you all the very best and hope your breathing improves so that you can live your life comfortably and have some fun. Good luck! 

Mash