Breathlessness

I find I still get breathless 2 years after my oesphagectomy is this normal? its only when I start walking etc . When i.m sat down or lying in bed i.m fine just wondering if it's normal .

[ccfc]

I would say it’s perfectly normal. Two years is still early days in the grand scheme of things. At that stage if I went out for long I would need to sit down. I am now coming up nine years and walk two and a half miles every day and manage eight miles every Wednesday. It takes time but things do improve. Best Wishes, James.

[Hidden in reply to ccfc]

Thanks James I also find if I go for a walk I have to keep sitting down so glad to hear it’s normal. It’s always nice to hear from people who are further along with there op and doing well 👍

[SurreyGuy]

Hi There. I had my oesophagectomy over 15 years ago and I still have phases when I feel short of breath. I can’t really work out why but it does seem to have a relationship with when I last ate. So I think it is about a slight dilation of my stomach when it is full. As I have delayed gastric emptying it can last hours after a meal. But, I wouldn’t ignore any symptoms that you feel are unusual and I would put a call to the hospital that undertook your surgery just to explain your symptoms. Maybe try the upper GI nurse specialist. No one is going to think you are wasting their time when you are trying to look after yourself.

[Hidden in reply to SurreyGuy]

I have noticed it's worse after i.ve eaten. I need to wait at least half an hour after food to let things settle. The specialist nurse is ringing tomorrow for my six month check up so i.ll mention it to her and see what she says . Thanks.

[jay2908]

Hi Molly,

Probably worth letting your GP know as I have the same issue. For me, I think I don’t breath as deeply as I used to, hence me getting out of breath.

Best wishes,

Jay

[Copyap]

I had my Ivor lewis in March 2018 , I feel breathless first 5 to 7 minutes when I go for my 1 hour walk.

[Hidden in reply to Copyap]

Hi does it get better after 5 to 7 minutes without you having to stop. I can't walk for very long without having to keep stopping to get my breath back

[Copyap in reply to Hidden]

Depends, sometimes I have to take small breaks probably 2 to 5 minutes especially if it's a climb..

[telford-hiker]

Hi .15 months down ..I do a lot of mountain walks ..done 6 since April over 3,000 feet ..I’ve done it for a good while now ..but have to stop a lot more since op than I did before ..then a day after a big day I’m exhausted for a day or 2 while I re fuel..I have noticed my recovery time ,in between stops is quite quick before I can push on..yet some days I struggle on the stairs ..I think it’s what we get used too myself..we off today to do snowdon tomorrow or Monday ..then few days chillin in wales ..the boost it gives me is immense..and I’ve had a short mountain break once a month since April…

[Hidden in reply to telford-hiker]

Gosh i.m exhausted just reading your reply😀 especially such a short time after your op . You sound like your doing really well. I also find that if I do a lot one day i.m shattered the day after. Enjoy your time in Wales but don't overdo it .

[telford-hiker in reply to Hidden]

I still struggle at times and get dumping few times a week..usually self inflicted 🙈 to much chocolate..we all just trying to get on with it ,best way we know I think …🍻here’s to recovery,looks a long road ,but better than the alternative 😊

[liz_crisp]

11 years on and I still get breathless, I wonder if it's due to the placement of the stomach and the fact it's sharing space with the lungs ?

[Hidden in reply to liz_crisp]

Yes that could be a reason for it. It always seems worse after i.ve eaten so that would make sense the lungs wouldn't have as much space if your stomach is full. When i.m sat doing nothing it doesn't happen it's only when I start walking or doing to much in one go that it happens. I then sit down for a few minutes till it passes.

[grandylynda]

Hi, I am just over 4 years on. I walk quite a lot and manage an 8 mile walk most weeks. I do get more breathless especially in cold winds and going uphill. People are very patient with my need for extra short rests. Since the spring of 2020 I have had a ventalin inhaler prescribed over the phone (lockdown) as I was really struggling with cold winds. It seems to help on the odd occasion that I can't get my breath. The diagnosis!? your lungs have taken a bashing and may need some help. My right lung was collapsed for Ivor Lewis and my left was squashed when I had a large diaphragmatic hernia. I hadn't really thought about stomach sharing lung space but that is probably relevant too. I love walking and worked hard at getting my distance up again. Hills are harder. Like Telford hiker I have to plan rest days after long walks. I think we all have to do our best to get back to the things we enjoy most. We have survived a lot so need to be able to enjoy life. Good luck for your progress. One good bit of advice I was given after my emergency hernia op was not to set goals but just keep at it making progress in baby steps. I set goals after I L and then got very low when I couldn't reach them. We are all different and it takes as long as it takes

[speakman]

Liz Crisp is correct, as I understand it. Because the oesophagus has been reduced in length so as to take out the cancer, our stomachs have to be pulled up so as to join the remaining oesophagus, so that in many cases, the new position of the stomach is between the lungs. The result is that, as Liz Crisp puts it, the stomach now has to share space with the lungs with the obvious consequence that space is now more limited than previously.

[Mentalmicky6]

I'm nearly 9 years down the line and my breathing tightens up a bit if I do manually active things after eating which I think is totally normal considering our new tiny stomach is trying to digest food and diverting oxygen away from other places, if I sit down after eating I want to go to sleep because of the same reason.

[Hidden]

Hi Molly, yes as most of the other replies suggest it does take a while and even 7 years on I still have times where I feel breathless and not always due to exertion, sometimes it seems to hit me if I am exited of anxious even, My consultant informed me just after surgery because they have to collapse the lung to gain access it will likely never exceed 90% functionality and of course that's 90% of how ever healthy the lung was pre op which in my case being a smoker for 25 years is something to be considered. However since moving up to the Peak District and getting 5 mile walks in the wonderful fresh air daily I hardly ever have (or notice anyway) any breathlessness but if I miss a few days I do get albeit very short terms of mild breathless moments, minutes only though and normally to the end of the walk. I am 65 though and was obese for most of my pre op life (115 kilos after surgery) now with a much healthier diet and lots of exercise I weigh 66 kilos and have more energy than I know what to do with and have never felt better in my life. Personally I feel that the 90% benchmark is something that can be improved on but in my case did take me pushing myself to achieve and even now sometimes I may feel like vegging for the day but will push myself to get out the door and exercise the lungs.

Martin

[Hidden in reply to Hidden]

Thanks Martin for the reply. I,m trying swimming which for some reason doesn’t make me breathless. It’s very strange how some days I can do a long walk and be fine other days I,m breathless after ten minutes . I can’t manage five mile walks but did 2 and a half today and was fine.

[Hidden in reply to Hidden]

That's great, 2 years is still early days anyway it can only get better 😊👍