Diagnosis, and available treatments in the UK

[Catel]

Hi Guys,

I recently posted about Pip, which you gave me some really helpful and settling advice. I now have a more lung related question/problem.

I have been diagnosed with what my Specialist says is 'Significant Emphysema, late stage 3/ Stage 4. In the past its always just been 'Emphysema', However I recently had a further Lung Capacity test, and that diagnosis has been changed, and is apparently a Lot worse.

His letter states 'The Lung Function you had on Sept 5th confirms a pattern consistent with significant emphysema. This is not surprising and fits in with what we already know about your lungs from previous CT/Imaging and xrays along with hospital records. 'I think it is important to note that the things we can try and do to improve things are very limited.

Im rather concerned as I have done some homework on the web and scared myself almost to panic. Every bit of info I read has a horrible outlook, basically saying stage 4 Emphysema has a life expectancy of around 5 years.

Also, my specialist isnt very helpful about treatments. Im nearly 50 so relatively young as far as lung problems go

.He hasnt offered me any help whatsoever regarding various options that I believe open to me. He has said that any of the options below are very experimental, and would require me traveling to London, and he cant justify referring me as Im so young.

I have mentioned options such as:-

Lung volume reduction surgery ,will pull open the airways and allow the breathing muscles to return to a more normal and comfortable position, making breathing easier.

Emphysema patients whose lungs are implanted with a pencil eraser-sized, one-way endobronchial valve experience significantly improved measures of lung function and report better quality of life

Chest physiotherapy has been shown to help remove secretions in the airways. Various techniques are available such as steam inhalation, which assist sputum removal and improve your breathing.

Special draining may also have to be done to remove fluids from the lung.

Chest percussion includes a simultaneous clapping of the chest and back to force phlegm from the lungs.

Oxygen therapy may also be necessary since the lungs operate at a low capacity in advanced emphysema.

Pulmonary exercise- Unfortunately I have a further problem in that when I had TB I broke several ribs through coughing, these ribs mended badly across various intercostal nerves, causing me serious and chronic pain.

I underwent several 3 monthly epidurals to help the pain, however after a year of this my pain specialist offered a surgery where he basically burned the nerve endings, stopping the pain.

However, he somewhat bodged this procedure, giving me a rather large !! pneumothorax, by burning through my lung rather than the nerve. So, this has left me with bad pain, and also stops me being able to exercise, which basically precludes me from any pulmonary rehab/fitness work. I currently rely on Oramorph 4 times a day, along with Slow release/continus morphine pill and powder, along with patches, it helps the pain, but not enough to stop any pain I get when I try to exercise.

So, Im panicking, Lung Specialist wont offer me any light at tunnel end, or even any options, Id like some information about what treatments might be available. I have another appointment with him on Thursday, and Id like to have some questions I can ask him regarding what may be available.

Sorry for such an essay but I realize I need to try and offer enough info as I can give. I would ask a question only to one of your dedicated listeners only, rather than this blog post (If this shouldn't be on the blog, please remove it and pass it on to your help guys if possible, thanks however I think I have a little more options by asking the whole community what they think, what they have had done, and what options I have, Thanks in advance.

Thanks guys

Cate.

[cofdrop-UK]

Hi Cate

Sorry to read you have had and are having such a rough time. I do not have emphysema but from the list you have given above I can't understnd why your consultant cannot refer you to a physiotherapist as you do not need to go to London to learn techniques to remove the gunk from your lungs.

I hope someone comes along soon who can be of help to you.

Good luck on Thursday.

Love xxx

[johnwr]

Hello Catel,

First of all, it is good to see that you have done some research about what is available out there. Earlier this year, I had pulmonary valves fitted to my right lung. For me, the operation was an enormous success. The story of my experience can be read at:

blf.healthunlocked.com/blog...

If it helps you, print the article and give your consultant a copy. The big advantage of valves is that if they prove not to be suitable, they can be removed using a similar technique to insertion. Also,there is no cutting, so there are no problems with healing due to steroid therapy.

Also there are a couple of good videos to watch.

youtube.com/watch?v=7C6CGqX...(Not working as expected?)

youtube.com/watch?v=xaPcKTO...(Not working as expected?)

If he wants to know more about valves, tell him to visit :

If you need more info just ask. I have loads but don't want to overload you.

breathe easy

Johnwr

[lavender1]

Johnwr am really pleased you posted this for Catel. I came back onto the blog knowing that I couldn't help but hoped that you had. Catel you have gone through a lot - I read your first blog some time ago. It is possible that you will have to fight for this treatment but if you don't who will? It seems there is as dearth of qualified surgeons for at least one of the solutions you have unearthed but surely not all of them. Does seem to me that if the powers that be give out available treatment they do not want to open the floodgates or are being instructed for one reason or another not to make the treatment easy for sufferers to obtain -Shocking, if so. Tomorrow take the info johnwr has supplied and be civil but firm in your request for treatment. Good luck,

[Puffthemagicdragon]

Don't take any notice of the 5 year thing. There are people on here who have had emphysema for 20 years.

[Catel]

Many many thanks for this information and advice. Ill certainly take Johns' info to my next meeting.

I think one of the problems is coming from the pneumo-thorax I had, in that my right lung is the worst of the 2, and is very very weak after the pneumo-thorax. Weak so far as to stop any further pain treatment etc. It may well be that Drs regard my right lung with some worries based on this history. I can see their point I must admit, in them not wanting to fiddle about with something that is working on such a precarious situation.

So helpful John, Im so happy it worked so well for you, heres hoping I can get offered at least something.

Thanks also Lavender, I need all the support I can get, I keep getting myself worked up, heres hoping neither of my worst nightmares come to fruition and Ive just been worrying too much.

Thanks again all have given me a modicum of hope

Cate

[Catel]

Was making the post as Puff left left your comment. Again , I probably worked myself up too much, look for anything on the internet and youll always find one horror story and one fairy tale, I managed to find 2 or 3 sites saying stage 4 was a death sentence. I said to my wife, who obviously is worried as well, that it was just scaremongering and Id last for another 20 years , lets pray we are both right, thanks for the message

[Catel]

Thank you Stitch I already have it on my list to ask him for the numbers of the FEV1 & FVC test results, and will be sure to make a note and also maybe ask him what his view would be inn this index. Many thanks for your time and advice

[Catel]

Thanks so much for everyones help, I have actually sent my specialist the 3 links in the advice above (I was lucky to stumble on his email address which has helped in all contact with him

Hopefully he will have 2 mins to glance at them before our meeting on Thursday

[timber]

Again I would reiterate not to take too much notice of the 5 year prediction .I was told that 12 years ago .

Try to stay positive ,

best wishes

Woody

[Hidden]

Hi Catel, How frightening for you and your wife. My husband was diagnosed about 10 years ago and is now has severe COPD. BUT I fully expect him to live on for a good few years yet. Our doctor told us that there was no reason he should not live a long life might be a bit slower but still going! We were really scared when we had the diagnosis and he was very ill a few years ago which prompted him to find out more about his condition. The pulmonary rehab which includes education on COPD and is very gentle excercise which you might be able to cope with. We have heard about the valve therapy but thats all - it will be something we will have to pursue!

What about ringing the BLF helpline and asking their advise?

.

Good luck. TAD xx

[Catel]

Well, Hi guys, thought Id update the message after seeing the specialist. Bit gloomy unfortunately, He basically said I have 4-5 years left if I keep going the way I am, sedatory. I can improve that significantly if I get fitter. So, I have a new treadmill, in front of the telly and will be working slowly on that.

Regarding prognosis, its a kick in the midriff Im sad to say, he has referred me to the 'Big specialist in London' but 'Dont hold much hope as you current CT/shuttle/chest xray shows basically that its got past the stage where the valve or LRS would be useful.

I have a terrible white area of pneumonia at the top on my right lung (A white area like a ghost?), along with scarring through out, and 'SEVERE' emphysema showing on both lungs. (Lots of big black circles?) Also have some 'residual??' pleurisy, recurrent. So cant do LRS cos the pneumonia covers the top pf the lung that the LRS would be putting most oxygen through. In other words without him put it in words and on paper its been left too late to do anything, well thats kind of the impression I was left with.

Rather than me waffling in, my specialist believes that my illness , scaring and residual stuff have taken me beyond the point they could offer treatments for. His exact words were I will let the London specialist tell you about it , so you hear it direct from the best there is.

So, I need to get fit, and do whatever I can to prolong myself. As Ive said higher up, Im not able to go to Pul/Physio, Ive been sent home from 2 courses in the past as my chronic pain flares up the minute I even stretch my right arm a few inches.

Looking on the bright side, get fitter, and still have 5 years to go in 10 years time

Thanks form listening guys

Cate