No lung reduction for me

[purdeyspringer]

Hi everyone, hope your all as well as you can be.Well I saw my Respiratory doctor at hospital, and after a meeting with specialist at Guys London, I am not suitable for lung reduction due to the fact that I am stage 3 and lungs are full of Emphysema holes, I only have 40% lung function in both lungs so there is nothing much they can do for me. He said he will see me in 2-3 years, yes years. Please God I am still breathing in that time. I'm 74 this year.

I have portable oxygen which I use when I need to, but apart from that feel like I have been written off by them. Don't have any appointments due for the Respiratory nurse either. Oh well best do what I always do carry on with my husbands help ( don't know what I would do without him)

Take care everyone and enjoy this glorious sunshine 🤣 x

[helenlw7]

That must have been a bit of a shock, the respiratory team basically washing their hands of you. Thank goodness for husbands - except mine who has dementia!

[purdeyspringer in reply to helenlw7]

I feel for you, my husband has started having tremors, but dementia is horrible for you to deal with, my mother in law had it, very hard. Thank you for you kind words. X

[helenlw7 in reply to purdeyspringer]

It has been hard. I cared for him by myself for 3 years, until last May, when I collapsed with exhaustion and he left me lying on the bathroom floor for over 24 hours, thinking I was asleep. My daughter came round and found me. I was very dehydrated so the paramedics couldn’t get a cannula in to give me painkillers so I apparently had a very painful journey downstairs and into the ambulance for my ride to hospital. I was there for 10 weeks. I missed my appointment date for a knee replacement, the only thing that was wrong with me at that point (apart from RA, asthma and bronchiecstasis.) now I can only walk with crutches. My husband got violent when I came out of hospital and wouldn’t accept carers so he is now in a care home and doesn’t recognise me or our children!

[purdeyspringer in reply to helenlw7]

Oh my goodness, my promises are nothing compared to yours, can't even imagine what all you are going through must be like, I am glad your husband is getting the care he needs, takes some pressure of of you, can you still have your knee replacement ?I can't get over what you have been through. Please take care, I hope and pray you get the treatment you so desperately need x

[helenlw7 in reply to purdeyspringer]

I’m hoping to get my knee replacement but it won’t be soon, because my long lasting gift for laying on the floor in one position (I was totally out of it even though I didn’t bang my head) was a deep pressure sore on my left hip, and that still isn’t healed, but it is much smaller. I won’t be able to have my knee replacement until it is fixed because of the risk of infection! I’m now waiting for a surgical appointment so someone can make a decision on what to do with the wound. It is dressed every other day by a distressed nurse.

[purdeyspringer in reply to helenlw7]

Really hope everything turns out well for you.

[helenlw7 in reply to purdeyspringer]

Thank you. I’m living with my daughter at the moment while my house is being adapted but hope to go home soon.

[purdeyspringer in reply to helenlw7]

Thank goodness you have a daughter to car for you, keep in touch so I know how you are getting on.

[helenlw7 in reply to purdeyspringer]

I’m so glad she lives near because my two sons live over an hour away in opposite directions! I’ve lived with my daugtfor a year now but my house will hopefully be finished by September.

[Alberta56 in reply to helenlw7]

Gosh Helen. I hope things are going to improve for you soon. You've had a very rough ride up to now.

[helenlw7 in reply to purdeyspringer]

Wound update - I’ve just had a 1 hour visit from a tissue viability nurse who is going to get in touch with my gp to see if they can get me an urgent referral to the surgical clinic who I’ve been ring daily for a week and not even managing to get to speak to a secretary! Fingers crossed they have better luck!

[purdeyspringer in reply to helenlw7]

Oh I hope so, let us know how you get on won't you x

[helenlw7 in reply to purdeyspringer]

I’ve just spoken to the surgical clinic. The wait is up to 12 months because my gp referred me for a routine appointment. I’ve now emailed them to see if they can refer me as and urgent referral! Otherwise it’ll be going down the private route, where I can be seen next week!

[Skatergirl1]

hi, so sorry for your news, but please don’t give up hope. I also am at stage 3, diagnosed 7 years ago at age 55, also not suitable for lung reduction as allergic to nickel for zephyr valves and am at 33% lung function. I have completed a pul rehab and being put forward to do another one. Thankfully my inhalers are keeping me going and not on oxygen.., but have found daily exercise has improved my breathing and am able to do most things in moderation with afternoon naps in between. Keep going, have faith the the disease is progressing slowly and take care 😊

[purdeyspringer in reply to Skatergirl1]

Thank you for your advice, I have done rehab, I also do exercise at home, but my breathing isn't good at all, but I am breathing 😂 that's the main thing right. Take care

[claracola in reply to Skatergirl1]

Hi i am also allergic to nickel. Waiting to be put fwd for lung reduction but wont be any good if they use nickel! Do you have any more info about this? Thanks! Clare.

[Skatergirl1 in reply to claracola]

Hi Clare, all I know, my consultant was talking zephyr valves being fitted, then discovered I was allergic to nickel, so then said I’m not a suitable candidate. Nothing else was offered instead. Said other alternative was lung transplant (which I personally don’t want or feel I need at this moment in time) has a cut off age of 65, I’m 62. So just taking my inhalers, getting as much excercise as possible, resting when necessary, and living as best as I can 😊

[Skatergirl1 in reply to claracola]

also, although I have emphysema my main problem is my airway restriction and consultant said no operation or anything can be done for that. You may be different and have a different diagnose to me, but did say no cut off age for lung reduction. So don’t give up hope. 😊

[Alberta56]

You sound a very brave lady. it's a crying shame that you are not being offered any support, but that seems to be what happens to us lungies. Thank heavens for your husband. xxx

[purdeyspringer in reply to Alberta56]

The help is always there, just they can't give me anything to relieve or improve the condition, I have the best inhalers they can offer, just wish I had never smoked, this is the consequences. Haven't smoked for over 10 years now but wish I never started. I am blessed with the best husband over 53 years now, must be love 😂

Best of health to you, and thank you.

[Ern007 in reply to Alberta56]

Chris - I get very little support from Heart, Respiratory and Thyroid clinics, once I was a regular attender and I sure have not inmproved, xxx

[Ern007]

It happens - I have three heart complaints and have not been to cardiology in years, even though I have IHD - Leaking Valves and heart rhythm problems.

Same with Respiratory - I saw one last year because I had cancer, and it was thought it could have spread to my lungs, he seemed OK but he left, new Respiratory Doctor, well he said the nodule had gone, but he had shown to radiographer who he said, it was just more scaring - if it had gone, how could it be scars,

Got a letter a few weeks ago, a Consultand ir reviewing this nodule to see had it grown any in last 12 months - I go later this month for a Thorax CT Scan - Even so whenI first got COPT I was seen in Respiratory at regular intervals. That was a long time ago.

My thyroid has beem poisoned by Amioderone and in effect I am on T4 tablets for life, again I was seen every 4 months, I have not been seen for years - Most telephone appointments cancelled.

My point is - I am now in my 70s and apart from the cancer team, I am not seen - I have got past bothering.

[purdeyspringer in reply to Ern007]

Oh my goodness what a horrible time you are going through. Please God thing improve for you, thank you for your reply, appreciate hearing from you.

[Ern007 in reply to purdeyspringer]

Thank you - I do have a good GP - she got me seen fast for my bladder cancer, also she got me treatment from cardiologist .

I hope you have a decent GP like I have. Take Care .

[purdeyspringer in reply to Ern007]

Good GP's are hard to come by. I am also very lucky to have a good one, get seen same day my bowl operation was done within a month and heart specialist have been on the ball too. Respiratory have been excellent. Just now nothing can be done I suppose, it has come to a stand still. At least the people that can get treatment will be seen. Best wishes

[PaulineHM]

Hello, you must be disappointed with the assessment you had for possible Lung Valves to be inserted.

I was too when I enquired about the possibility of having them. The damage to my lung is far too extensive and dense with no collateral airways to use, which is all a bit pants isn't it ?

Did the consult discuss the possibility of prescribing Roflumilast with you ? This is a medication for those of us with severe COPD ? I was offered it 2 1/2 years ago and although it was tricky to adjust to, it has made a big difference to my life. It is a drug on the amber list so only the consultant can prescribe it under then shared care protocol. If it suits people then the GP takes over the care.

Even though I can't do much more than I could do before I started taking it, it has stopped nasty bacterial infections for which I am grateful. I have Type one Repsiratory Failure now.

If you can be as active as you can be - local balance classes can be useful and keep your sats at a helpful level by using your oxygen. I try to enjoy each day which is a great help.

Go well.

Pauline

[purdeyspringer in reply to PaulineHM]

The procedure they were looking at was to cut away the bottom half of the lungs which are completely damaged, this would supposedly improve my breathing. But I had Respiratory failure when I had my bowel operation in 2021, and Respiratory failure again when I had my second bowel operation in 2022. It is only since then that my breathlessness has decreased by half. I can't walk more than a few yards at a time, one step at a time. Hovering takes ages and most households chords. If I go out I walk as far as I can, and I really push myself, then I have to use my wheelchair. Before my operation I could walk quite a long way before resting. I have seen my dad and two brothers go through this, so I know what lies ahead. But never give up, and thank God for every waking day, and my family.

[PaulineHM]

Hi, I am sorry to read this and that you are finding daily life so tough. It could be worth asking about Roflumilast for yourself.

I guess respiratory physios will have seen you to advise what might help ? I have found them very useful in the past.

Look after yourself.

Pauline

[SarahEG]

hi there - I was searching lung reduction and found you. I’m sorry about everything you’re going through. Can you ask for a 2nd opinion?

[purdeyspringer in reply to SarahEG]

No not really, my doctor at the hospital, had a meeting with top specialists at Guys London which is one of the only hospitals that actually perform Lung Reduction operations. If your lungs are clear at lower half your OK, but mine are too damaged to undergo it. Besides the fact the last two operations I had since 2022 I had Respiratory failure so I suppose taking that into consideration too they came to their decision.