New to this forum, but wondering if someone can help? Hubby has severe COPD and has now elected to have LVR surgery. Seen the surgeon once and have another appointment on 21 Jan. Just wondering there is anyone who is willing to share their experience of having this surgery and whether it has helped? I can't say I know how he feels about it, but I am really worried about everything. It would be good to hear about other people's experiences, although I know everyone is different and can react differently? If anyone is willing to share their experience I would be grateful as the hospital cannot give us any more information other than details about the surgery. Many thanks
Lung Volume Reduction Surgery - British Lung Foun...
I had my pre op tests today for my proposed LVR op. All the people were very good and attentive and my op might go back a week because of my getting over pneumonia.
Nurse gave full medical
Meeting all people involved
Very interesting and I'm ready.
They also touched on post pain and what to expect.
I aim to let this site know how it goes
My mum sadly passed away only 3 months ago but I want to tell you about the positive effect the operation had on her . 20years ago my mum had lung volume reduction surgery at Leeds . Before the operation my mum was certainly struggling . She could not walk more than a few meters without being totally out of breath. She was very restricted in her ability to do any activity. The operation was amazing for mum . Within a short amount of time after the op me and mum could shop in the Trafford centre end to end ( it’s not small !) without a wheelchair ! We used to go shopping and always toast the surgeon Mr Thorpe and thank him for giving mum her life back . Mr Thorpe said he thought mum would get the benefit for three years but she actually got nearer 20 ! Obviously there was a gradual decline and the last few years we were back to struggling but that operation gave mum a vast improvement in her physical abilities over many years .I do need to say my mum was known as a very very positive “can do “ person . She was very determined and this mind set did drive her and help her get the best from the procedure .I am sure the LVRS has progressed in 20years but mum got amazing results back then .
Everyone has different experiences and my mum was extremely spirited but my account of the effects of the surgery on mum is genuine . I wish you both all the best and hope your husband can have the same determination as my mum ! Looking at your site name I wonder if you both love dancing and if so hope this is the key to you being able to continue.Wishing you both all the very best X
Thank you. Hubby definitely has a "positive can do" attitude, so hopeful of a good outcome. We realise it is no cure, but if he can get back to how he was a few years ago, that would certainly improve quality of life. He does still work and yes we do enjoy sequence and ballroom dancing, even though we sometimes have to stop. But as soon as he gets his breath back we just join in again. Thank you for your support.
Hi I am 72 years old and had LVRS in October 2018 . I was previously on ambulatory oxygen but had severe emphysema in both lungs . I had an upper left lobectomy and wish I had it done sooner .I can't have the same on my right lung as I have a cavity in that one but if I could I would . Recovery is different for every person but I've always had a positive outlook and refuse to let mycondition rule my life. My surgeon at The Bromptonsaid positivity was the best way forward . My recovery was just about complete in 4 weeks but I am a fighter . As I said everyone is different .. It will change your life .....I was glad to get mine back .Talk to your surgeon to dispel any worries . Anything else you need to know just ask I'd be happy to help . Good luck and go get em as the saying goes .
Best regards Babs xx
I had LVR in May 2015 at Brompton.I will be honest I was petrified at the time,but after assurance and lots of visits to Brompton prior to op I had no option as I was so ill and got to the stage I could not walk more than a few yards.I became housebound and was told there was nothing more that could be done for me as the Emphysema was so bad my right lung had calcifications,not helped by severe Asthma.I had literally had no breathe to go to the loo!I was on Oxygen and constantly tired.My skin and bones have suffered due the years of steroids to keep me going.
On a lighter note,I had my operation and was walking the corridors of Brompton the next day with a physiotherapist.By day 8 I was walking on my own more determined than ever as it was so great to breathe and I felt more alive pushing myself.I was walking more and more,drains in my back,Morphine machine to press for any pain,my friend 'the drip' whom I could hold at any time for support.I was a new person and after a few days my skin changed from a grey muddy appearance to my photo in my profile.I was 58 at the time of the op and was told I looked so much younger.My appetite increased as I didn't get out of breathe so much.I was carry light loads of shopping!I felt stronger and the happiest I had been in years.I attended pulmonary rehab,and the key is exercise and healthy eating!I became a new person and after 2 years came off the oxygen.I admit I did have a terrible bout of depression when my friend Sue, whom I met on HU died and this destroyed me.I became a bit of a recluse as we were both in different hospitals at the time with chest infections and she didn't make it home.I still miss our chats and how she phoned me in Brompton just after my op with a million questions.I expect some of you will remember Sue.She gave me the incentive to keep going and vice versa.She sent me a bracelet in the post saying 'never give up'and I haven't Sue.I have kept going for both of us my angel.
Its 4 years after my op and I feel wonderful.I have had to contend with the pain of Oesto arthritis,porotic bones,thin skin,Polymyalgia,Spondylitis,Diverticulitis,Who cares I can breathe! I know it will be the making of your husband,positive thoughts ,determination and the love of a good woman by his side.I sincerely wish you both the best and I honestly believe he will feel a different person.I recently found out I have Emphysema on my left lung,so its full on exercise and healthy eating for me.All the very best to you all.x
Thank you sweetheart.All the very best to you and after reading your profile,(and admiring the beautiful doggies)you are an amazing and positive person.I admire the positivity that oozes from your profile.I sincerely wish you all the very best in all you do hun.Good luck and I hope all your dreams come true and that match will no longer be a waiting game.XX
Thank You Beautiful Lady, We have to inspire everyone don't we. Unfortunately I am no longer on the Transplant List. But, I do get by quite well and still have my Positive Attitude amongst all the ups & Downs. I am now ready to go out with Hubby, Lippy on, Dressed in my Jeggings, baggy T Shirt, Parker & Scarf, Oxygen on his shoulder, and off we go, Nothing planned , just a "See how the day" Turns out and I get more "Steps" on my Watch. More than Likely a stop at the Pub for a Vino, a bit later. have a Lovely day Sweetie. Love n Hugs. Carolina. XXXX
Aww bless you.I am so sorry carolina.(Onwards and upwards girl)I was in resus with flu before Xmas and came out agreeing to knit muffs for dementia people:-)I knew men had a reason for broad shoulders.Now I know why! Have a great day sweetie.Never plan its boring! Go where the mood takes you.I sat in the car y/day watching the sea.I am just off out for boobies squashed! Ouch lol XXX
I am sat in a pub having a Latte, mybe later a Vino. Your sad time with your friend Sue, takes me back to my Friend also Sue. Whom i met at Breathe Easy Exercise classes, we had a great friendship Bond, she had a single Transplant 4 years before we met, she was my inspiration in those Days of waiting on the Transplant List, 3 years. We would meet up for coffee often, then one dsy her Daughter brought her to the Class with her new Mobility scooter, Sue didnt look well. Her Hubby phoned me a week later to say she hsd Passed, broke my Heart, she is still on my Facebook and I still chat to Sue, with her Husbands blessing, he obviously keeps me updated on Family. Once in a Life Time you meet that one True Friend, She was one of the reasons I came off the list but , we are Here, we are Breathingwe plan ahead. Oops, almost finished my coffee, Hmmm a vino maybe. ♥️♥️😘🍷🍷or two. Xxxx
Very similar to my friend Sue.She had a new scooter and told me she looks like "Marge off Benidorm".I came off Hu when she passed,but her humour was magic!Have you Vino sweetheart,these little perks in life is what keeps us going.Its wonderful you dance and great for muscle content which decreases with lung disease.I am on 32 drugs a day,but a little G+T was refreshing over Xmas. I have a chest infection at present:-)l have been on Doxy for nearly 20 days,but still went out with my neighbour and her baby Monday.We were all coughing and sniffling I was so breathless I had to sit on a chair in the baby changing room.I look for anything that juts out that resembles a seat.;-)I took my 92 year old neighbour to the dentist and I had to tell her to slow down!So funny!Take care hun and thank you for your kind words.xx
Hi Hun, I'm home now, having a Mali woo woo, while Hubby makes Lunch. I do have a Mobility Scooter & Wheel chair, But always think of Sue in hers, Which makes me stronger as to not use them if I can walk with a stick. Don't dance now, used to dance on Table Tops in Spain, I have the proof, Ha Ha. Here we are Wednesday Afternoon. I do hope your Infection Clears soon with Doxy, That is my Rescue Med along with Prednisolone, which I take 2 as a maintenance Dose these Days. Always with my mate Oxy, become my Side kick these days, along with Hubby. Ha Ha . Love n Hugs. C. XXXX
I am on 6 prednisolone with Doxy and can only wean down to 2 a day.Any lower and I get Polymyalgia.I have been on steroids for nearly 30 years.The first time I had Polymyalgia I thought I was paralysed,as only from my knees down worked!Staying on 10mg for good controls it for me.The uncanny thing is to stop it is another high dose of steroid and wean down slowly.I refuse a wheelchair as I am determined to keep walking for as long as I can.You are having a great day!Your hubby is your rock.I can see he loves you dearly.My boyfriend once said he's my boyfriend not my carer.I soon said bye bye with a dry eye.lol I loathe selfish people and will help anyone.I suppose it would be a boring world if we were all the same lol.Enjoy your day sweetie,I am on a challenge on "Candy crush"haha love and hugs Laura xxx
Thank you so much for that Laura. I have just read this and it actually made me cry, but in a good way (if you know what I mean?). Hubby is 61 and a very determined person and we do still dance together, albeit we have to stop before the music has finished. And we are quite lucky in that he still works and has a job he can do (driving cars!). But he gets his breath back and carries on with the next dance. Your reply has given me a lot of hope. Thank you <3
You are more than welcome sweetheart,any questions I will answer.I am sorry it made you cry,but I want you to know it could be the making of you both.I never thought I would be this able after being so disabled by crippling breathlessness.It will be small steps at first and before you know it as the months go on,he will find his breathing will get stronger by the months.I have no doubt after a year or so he will finish that dance with you!We are all built differently,as I will say a positive and determined approach is what will get you through.A good diet is essential too and the best thing is I can actually lie flat on my side to sleep,something I have never been able to do!I can carry a bag and walk quite a way now.I spend all summer tending my garden.I sit more than stand at times as my age is to blame as well.I can change my bed sheets and things that were impossible before,as any exertion was terrifying as my breathe would just go.I was constantly taking Oramorph and Lorazapan for anxiety due to losing my breathe and no doubt people who have breathing problems all have anxiety.Its natural to get anxious when we can breathe.The technique I would use is breathe in slowly for 6 and out through pursed lips for 12.This actually stops 'panic attacks'and can be done just for a breathing exercise too.I hope this helps sweetie.Take care x
Hi Lovely Lady Dancer, I agree with much of the comments made above, and was lucky enough to be suitable for LVRS via keyhole in 2016. The statements about rehab and effort with diet and exercise (however small the steps are) before and after surgery are totally correct I believe. You will of course, both have good and bad days, but its really a no brainer if you are offered it given the alternatives. I wish you all the best in luck and love x
Hi welcome to forum, I have severe copd, after keyhole lung volume reduction surgery operation on 16 Dec 2019 I left the hospital 5 days later but keyhole surgery is a less evasive type of OP I feel more comfortable breathing deeply but am still breathless I've been told by surgeon it may be couple of months before I feel any benefit but to what degree can't be determined it's not a guarantee as such as some folks do better than others, I do feel better on the move but it is still early days my lungs are in very poor condition so I was keen to try anything also I'm not as chesty so overall I'm optimistic, it can take time I'm told for the healthier lung to expand and function better with the extra space created through the reduction, hopefully I'll continue to improve more, I don't get the chest pain I used to either, I would go for it if you're being offered any improvement for severe emphysema can only be welcomed, I hope this was some help to you and wish you all the best x