I've been refused any treatment on the nhs and spend 22hrs a day in or on bed, even the 5yards to the kitchen sees me gasping for breath. On oxygen 24/7, my brother rightly said I have no life just an existance! My wonderful partner does what he can and is an angel but life for us both is not what it was.
I've been offered the possibility of LVRS by a private Doctor at the Royal Marsden.
Has anyone got any experience of it?
How long was the revovery?
Were u in great pain after the op?
How long did the recovery take?
What were the benefits after recovery?
Any info from members would be great, the op is likely to be very expensive and I don't have unlimited funds, in fact quite limited. But having been abandoned by the nhs, I don't have any other choices!
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sloaneranger
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My only knowledge of this is that you have to meet certain fitness levels for it to be successful and that operating on someone without that fitness level can be very dangerous. I am sure that if the procedure would help you the NHS would offer it.
I've been told I don't qualify for the coils as a pre existing illness will "mess up thier reaserch figures!" And that I would not survive an operation! In short in not so many words I've been discharged and told to come back when I'm dying! They even wrote and told me to request to be kept comfortable but not treated if I come into hospital with a chest infection!
Don't get me wrong I've had the best of treatment with my other illness and still do but with my COPD I'm seeing another side of the NHS they seem to take great delight in thier catchphrase "there is no cure!"
Hi I agree with Mrsmummy. Have you asked why the NHS have refused you the operation? What did they say? It is not suitable for most people but if you qualified, and you could stand the operation, then I don't see why the NHS would refuse you.
I've been told I don't qualify for the coils as a pre existing illness will "mess up thier reaserch figures!" And that I would not survive an operation! In short in not so many words I've been discharged and told to come back when I'm dying! They even wrote and told me to request to be kept comfortable but not treated if I come into hospital with a chest infection!
Don't get me wrong I've had the best of treatment with my other illness and still do but with my COPD I'm seeing another side of the NHS they seem to take great delight in thier catchphrase "there is no cure!"
maybe it is because of your other illnesses that it is unsuitable what are they
hi, am sorry to read your post .. i have read some post about this on here and they all seem to have benefit from it.
have the nhs/doctor/specialist given you the reason why they won't operate on you? i would think its all down to how high the risk is for your body to be able to handle the operation...or is it something else?
whatever the reasons are you need to talk then through with the doctor and the surgeon who will do the surgery..thats my experience of private hospitals.
they should be able to tell you what improvements the surgery will have and everything you need to know.
I've been told I don't qualify for the coils as a pre existing illness will "mess up thier reaserch figures!" And that I would not survive an operation! In short in not so many words I've been discharged and told to come back when I'm dying! They even wrote and told me to request to be kept comfortable but not treated if I come into hospital with a chest infection!
Don't get me wrong I've had the best of treatment with my other illness and still do but with my COPD I'm seeing another side of the NHS they seem to take great delight in thier catchphrase "there is no cure!"
I am in the process now for either lung reduction surgery or lung transplant. There are lots of criteria that need to be satisfied and I am in a rehab program now as the early stages of the process.
Pulmonery rehabilitation you should be able to access it through either your hospital doctor or GP. They are generally held in the physiotherapy dept of hospital and are 6 to 10 weeks of light exercise and information classes to help with breathing and managing your life around the illness in general.
Try not to feel like your abandoned. The Doctors do their best to try & improve our circumstances as much as our body permits. I also have severe emphysema. Like you I felt so abandoned because the NHS decided last summer that due to complications from two types of cradiomyopathy, they felt I was also not a suitable candidate for LVRS.
That left me feeling very negative. My mother died at 63 through Emphysema & my eldest sister also at age 65. So I decided to change the situation into a positive and began doing little bits of exercises until my fitness levels increased. I also learnt how to breathe again from my diaphragm (belly breathing) and using the My Space meditation routine, the difference that made was incredible.
I had LVRS on 24th February 2017 on my right lung because they felt this was the worst side. The difference it has made to my life is incredible. I can now walk a few yards to my car & not be out of breath. I am exercising every single day & lifting weights to help repair the muscles.
Did I feel pain?? To be honest I had a totally positive mental attitude about the whole surgery and was moving around the day after. We suffer with Emphysema every day so I did not consider the pain to be a problem because i knew what the positives would be from this surgery.
You seem like the kind of person who is mentally strong and very positive. I suggest you forget about the private surgery. See your consultant again and explain your plan to improve your fitness levels to meet their criteria because you WANT & NEED this surgery.
I really hope & pray this has helped in some way xx
I got myself one of the cheapest excercise bikes and initially would keep it on the lowest settings and try to pedal as far as i could. At the same time I would use a meditation tape which I had bought in India several years previous. You can download online. Its called Gayatri Mantra.
Since my LVRS I cycle 10 kilometres daily. I am lifting 5kg weights and most importantly, my eating habits have returned to normal unlike previously when I would feel full after a few mouth fulls because of my breathing.
Yes it feels a little tender but I would do it again tomorrow regardless of any pain. Has the consultant confirmed to you that generally the benefits for LVRS only last around 3 years or so ?? If they have not then I suggest you meet with him to discuss this.
6 weeks after my surgery, I met with the Thoracic Doctor who did my surgery. He was extremely surprised how well I looked and indeed feel. All of the doctors including my GP gave very negative comments about this surgery because of my heart conditions but I was determined to prove every one of them wrong.
You will feel amazing once surgery is completed. Forget about the pain. You probably face more pain every day trying to catch a breath. Let this be your chance to get back your life xx
Just remember one thing, keep positive ! No matter how you feel just after the surgery, it WILL get better provided you keep your determination & positivity going strong. The worst thing anyone with our types of disorder is to panic. You will have all the medical support around you and also the love & care of your partner. Keep the faith in yourself and it will work.
I didnt mention that I am 62 now. Smoked from the age of 11. On 18th January (5 weeks before my surgery) I had my last cigarette. Now going on 16 weeks since my last cigarette. I dont miss the smoke or the smell. I just miss that feeling but no matter how much I miss that feeling after smoking that 1 cigarette, I could NEVER put my body through that misery ever again.
You will surprise yourself just how well you will be from this amazing treatment & opportunity to get your life back for a long time. Wish you all the very best xx
Thanks so much I'm actually really vibed up reading your posts I guess I was just panicking a little as from trying to access the coil treatment which isn't such a major op to now facing the LVRS got me a bit worried.
But reading the benefits you've had gives me hope!
I'm 54 stopped smoking 5yrs ago don't miss it at all!
Any surgery is a big risk but we have to be determined & head strong to get through it.
I really am so thankful that I pushed myself to get my fitness improved enough to be offered the surgery and proud of how much I have pushed myself to get my breathing back to a level that does not embarrass me You will know what I mean.
You will also know what I mean when you have completed the surgery and drop me a note to say Joe, its done & I feel fantastic. We do forget how good it is to take air into our lungs xx
I use a steeper machine for 33 minutes, 3 days a week. I lost 70 lbs over the last year. I too can only walk a few steps without resting. If you search Google for lung reduction surgery, it will provide a pretty good list of requirements. I have to be tested at my local hospital and if I pass, I will be tested again at a large hospital that would actually do the surgery.
Unfortunately not all available treatments are suitable for everyone as you get older. I don't think the nhs has abandoned you and the private doctor is only out to make money ou of your woes. Be positive in the fact that you are still alive and still can be with your family and friends. Positive mental attitude and always looking on the bright side gets me through each day
How about seeing if there is a hospice near you who could help with your levels of comfort? It doesn't mean you are dying soon or anything but they are often helpful in palliative care and are a useful resource.
There is the alternative of valves. As far as i know, they are still on test but the tests are free, the suitability tests are free and they are on the NHS and being done regionally ...Is local hospitals or travel allowance. They put you through the latest, computerised diagnosis, then interview you and go through the results with you. If you aren't suitable for the trial, which i wasn't, they will then advise you of the best treatment to move on. You can then go and bully your GP. I signed up, not wanting the procedure but got the result and info i wanted. Sorry i cant help more but I'm away from home and so my info is limited.
Hi there,once you are able to get your hands on the trial info in which you took part,would you mind posting them here? I'm always curious to know if with severe COPD and other "things", if I'd qualify for any trials that maybe could help me.
Ah Sloaneranger! I get the feeling your holding something back here but that's up to you. If copd doesn't get us then something else will but just remember there are people in this world far worse off than most copd sufferers. As for me I have had copd for many years but try and make the most of life and when knockbacks come, get up again and try again. COPD sufferers tend not to get much sympathy in this world especially from the nhs. Good luck.
The Royal Marsden is a cancer hospital. The lung unit on their website doesn't mention LVRS. Do you mean the Royal Brompton, virtually next door? I'm under the Brompton and have been considered for LVRS but it won't happen because I don't meet the clear criteria as my lung damage is evenly spread. My understanding is that LVRS is appropriate where the damage is localised and the useless bit of the lung can be dealt with, giving the rest better function. If you don't meet the criteria they won't do it as it would be dangerous and pointless. For a surgeon to offer to do it for payment when it's been rejected on the NHS doesn't sound like the Brompton I know (assuming it's them). The surgeon would be risking her/his professional future if anything went wrong.
However 22 hours a day in bed makes it inevitable you'll have trouble coping. Even just moving round the house is so important.
Not knowing all your details I think I would agree with rogerw that 22 hours a day in/on the bed is too much and perhaps more movement little by little would begin to build your strength, muscles and breathing. Best wishes, JoHarr
I'm really sorry you are struggling and spending all day in bed, I know it's hard but try and get on pulmonary rehab see if they can help with exercises just walking little by little should build up your lungs, it's terrifying hearing the words terminal I don't like it it scares me, but people are right with the lvr the damage does need to be in one area, mine is all over so I'd be no good, what about getting on transplant list i know it's a long process xx
Thanks I've been refused the transplant list too! Because of my other illness which is ridiculous but thats thier stance! I'm not gonna roll over and die when I got ill in 1997 the doctor said I should sort out my affairs as I had 6months to live at best......he didn't know this ballsy Scotsman wasn't gonna give up without a fight!
Good for you. There are others on here far outliving doctors expectations and they have no plans to go anywhere soon! But I do agree you need to be more proactive.
It could be that the NHS have information on your lung condition that the private specialist may not have. It sounds like your lungs may in a bad way which is why NHS have refused treatment. I am in the same boat to a degree but have not been actually refused treatment but my Doctor is not at this time prepared to refer me. Having recently seen a Thoracic specialist he has informed me that lung reduction, lung valves & lung coils have had mixed results. Before you take on the expense of private treatment try a second opinion route.
It may cost a few hundred against thousands. Try contacting those who supply lung valves, they may be able to advise of other hospitals for treatment.
The private doc had all my nhs notes and scans etc within a day of me giving him consent so its not that! Interestingly I've discovered the doc who leads the team that have refused me treatment is also a private consultant at the same hospital....it's begining to be as I've suspected over the last 3years MONEY TALKS!
The doctor I'm seeing at the moment is the 3rd private doctor I've paid for consultations with. All 3 agree I could be treated and all 3 thought the excuses I have been given by the nhs were just that cost fueled excuses!
get yourself on a trial run at your local hospital they treat you great the doctors know nothing i would be in bed nearly dead by now if it wasnt for what people told me and i went on a trial at the hospital i am so much better now than i was 8 month ago
Hi, thanks for response I hope it goes well for you. Please let me know what treatment they propose and then please let know how you get on with it & what it costs.
Endobronchial valves are a non-invasive alternative to LVRS. They are inserted using bronchoscopy. I believe these are available in the UK on a patient by patient basis. Whether or not you would be a candidate for these depends on various criteria.
Im with joekencon exercise is the key i have severe emphysema got 28% lung capacity i was like you could not walk 5 yards i could not breathe at all i was awake most of the night sitting on the bed because i couldnt breathe could not shower took me all my time to have a bath i was useless if it was bigger than a flannel i could not carry it i then insisted i go rehab told my doctor to refer me i first went and could only walk 2mins 40 seconds but i had to stop 4 times which is fine its hard very hard but its worth it you also have to do exercises three times a week but walk every day i can now walk 5 mins without stopping a can now cook again i can breathe a whole lot better its very hard and its easier to quit but dont. stick with it the idea is the exercises improve your muscle so it uses less oxygen so you have mor for your lungs and do breathing exercises from your tummy not your chest i found that hard then someone told me if i took my chin into my neck i have no choice but to breathe through my tummy if you look on the internet at the pulmonary rehab exercise it should tell you but tell your doctor to refer you and dont take no for an answer trust me you will feel loads better
Hello can I ask why you been abandoned by nhs cause private will be very expensive and day to day care how long will you go on for. Nhs has a duty of care.
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