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.