Lobectomies many years ago!!

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I am 76 now but in 1951 l had part of my right lung removed and in 1960 the same to my left (think l was a "guinea pig"wink. Have been in good health most of my life but now getting breathless. Wondering if anyone else is out there with similar problem. Wondering if l should be using an inhaler? The hot spell at the moment is hitting me hard!!!

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  • Posted

    Hi Kay I'm 67 and had a right lower lobectomy when I was 17.  I was told I'd need another lobectomy in the future.  The hospital physiotherapist advised me not to let them perform another lobectomy and indeed it was never again suggested.  So I think you're right in thinking we were guinea pigs.

    About ten years ago I started attending a bronchiectasis clinic and was put through various tests using inhalers.  I was told they weren't beneficial to me.  As we all get older our lungs lose elasticity.  Do you exercise?  It might help. I think we're all struggling in this warm weather.

    It's great that you've managed to keep healthy.  Would you like to share with us how you've managed it?  

    😊

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    • Posted

      Thanks for your reply lrene.😀

      Don't worry old age has caught up with me with all its aches and pains!! That was interesting what you said about the inhalers. So l can forget that thought. I did have a course of exercise with the local respiratory group a few months ago which was good but should keep it up. Have been looking for a local exercise group but can only cope with something gentle!!

      Hope to hear of your progress in the future🤞

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    • Posted

      Hello Irene

      Hello Irene and Kay,  I am interested in your experience of inhalers.  I have steered away from them in the past because I found that they have made me cough more as soon as I inhale even with a spacer.  After being diagnosed about 14 years ago I have had no help other than the suggested inhalers, but am now more breathless. Could you please tell me if this was your reason for them not being suitable to you? 

      I am very pleased that you have both managed your conditions so well as I am a complete novice with this due to being told that my bronchiectasis was mild and being very fortunate that I do not get infections.  Therefore not receiving anything other than a physio appointment to show me how to clear my lungs.  My health has since deteriorated though and I need some help.  I once asked the respiratory nurse what a flutter valve was and she had never heard of one but that was sometime ago.  I am going back but even my doctor says bronchiectasis is difficult to treat.  Is this because mine was/is mild?  

      Thanks for reading this. If anyone else has some info I would appreciate the comments.

      Many thanks

      Carol

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    • Posted

      Hi Kay

      Thank you for your advice.  I do not attend a clinic because our surgery does not have one.  I have asked for a referral to one but have been told to see the respiratory nurse at our surgery once again.....I was told when I was diagnosed that I had slight asthma as well as the Bx, You will probably see my post to Irene on my current health position.  I have to make this decision on whether to go ahead with the hip operation which is causing me difficulty getting around and  trying to get myself fitter for it  and of course my lung condition is a big part of this. 

      Thank you Kay, and good luck to you.

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    • Posted

      Although my mom did not have this disease she had several other respiratory problems and they were severe. She took an spin class. On recumbent bikes that was specifically for people with respiratory illnesses and it was held at a hospital. So I believe that they had nurses on staff or at least a nurse on staff during the exercise portion. So I think you know where I'm going with this... Check with your local hospitals. You might even ask your pulmonologist if he knows anything.

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    • Posted

      This sounds an excellent idea.  I am so pleased that this help is available for people with any respiratory illness, whether it is available here I don`t know but will find out.  Many thanks.
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  • Posted

    Kay

    Just because it was found that inhalers weren't beneficial to me some years ago doesn't mean they won't help you.  Do you attend a bronchiectasis clinic?  It might be an idea to ask if you could be tested.

    My understanding of Bx is that the airways are floppy and collect mucus which is then prone to infections.  Unlike say asthma where the airways narrow and hence inhalers to open them.

    Re gentle exercise, I have a mini trampoline at home which can be as gentle (or vigorous) as you like. Which reminds me I must dust it off and use it 😂!

    Carol

    Unfortunately there is no cure for Bx and my advice would be to keep yourself as healthy as possible in order to avoid antibiotics which are sometimes a necessary evil.  

    * Eat a healthy diet (lots of fresh fruit and veg, no processed food).

    * Build up your immune system (lots of Vit C)

    * Keep your lungs clear (I find nebulising a saline solution helps me loosen the gunk but there are other methods - breathing exercises, flutter device etc)

    * Avoid people with coughs and colds

    * Exercise

    I would say I feel better now than I ever did.  I don't know how old you are but when I was working, and with two children, there didn't seem enough time to have a good "clear-out".  I wish now that I'd made time!

    If you do need a course of antibiotics then it's very important to take a probiotic.

    Hope this helps

    😊

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    • Posted

      Thank you for your advice.  I already take vitamins and eat good food.  You mention nebulising and this is my point.  I have never been offered the chance of a nebuliser or anything other than an inhaler, which I have tried on occasions but they they made me cough more.  I spoke to my doctor yesterday and asked for a referral to the local respiratory team but she advised me to see the respiratory nurse at our surgery again.  I should add that my concern is that I am 75 have a long time problem with low energy levels due to a illness years ago and am now due for a hip replacement operation.  I do exercise in a small group and enjoy taking part but on taking that further in order to help my lungs had a relapse recently.  I am also doing leg exercises to help my hip.  In conversation with my doctor she as well as the nurse had never heard of a flutter device and that is my problem.  I have made an appointment with the nurse and will make it clear that I am unhappy with things so far especially as I had a private test which did get a reading of my lung function something which as never happened at the surgery.  Its only by reading your comments and others on this site that I realise how little I help I am receiving.  Thanks again

      Carol

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    • Posted

      Carol, you might not have been recommended a nebuliser because of your asthma.  The saline would probably affect your lungs.

      A flutter device is to loosen the mucus in order to help you get it up and out.  According to reviews I've just read online, an aerobika does a similar job, and people seem to prefer it.  I don't know if you'd be prescribed one or have to buy your own.

      I'm attaching link to a video of breathing exercises that you might find helpful. (Hope the link works!).

      Moderator comment: I have removed the link(s) as it was broken. If users want this information please use the Private Message service to request the details.

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    • Posted

      Irene thank you again for your advice.  I can look up the aerobika and appreciate the fact that it may be easier to use. I know what this and the flutter device do but as mentioned these have never been mentioned to me before.  As I have said this is unknown ground for me and your input is educating me on the complexity of the disease.  I use a good youtube  site for exercises.  I will be seeing the respiratory nurse on the 26th this month.
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    • Posted

      Carol, I've had Bx for 67 years and have been given very little advice.  I've gained most of my knowledge through hours on the internet and forums like this.  Doctors will only dole out antibiotics which as I've said before are sometimes a necessary evil.  There's so much we can do to help ourselves.

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    • Posted

      Yes that has been my experience.  Fortunately  I do not get infections so would only want to take antibiotics if this was the case.  I have always found that as long as I stay `on the move` I am ok but lately I have not been able to do that as it is my general health which I think is making me more breathless. 
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