Got my results at last from the Lung function tests. Consultant confirmed that I do have Restrictive Lung Disease due to a combination of the fibrosis from my severe infection and lung failure in 2008. He also confirmed that when flat my breathing drops immediately by 12.5% from my 57% when upright. (So when my GP gets the results he will be eating a little humble pie.) He was very good at explaining everything and that I need to lose weight ( No shock there ) but my breathing will not help if it was to be done with exercise so I will have to see a nutritionist to look at a negative diet to get my weight down. He also told me that slip on shoes are the best way forward which I already use now as I have to do lace up's in stages as I lose all my wind bending over doing them up. He did ask how I am in a bath? I explained I have not bathed for over 30 years only ever showered.
He did say that with my Paralysed Diaphragm and my heart condition a Pacemaker might be the way forward, until I told him I am having a Pace and Ablate this year which will make me pacemaker dependant as they are removing my sinus node. It seems I am processing O2 well but not getting enough in for when the body needs it like stairs and quick walks etc.
He then bought up the working with asbestos. I explained that I was cutting this evil stuff on a circular saw for 10 years. (no mask) He showed me my old CT scan and explained what they look for and typical indicators black good white and grey bad as he slid down the image he pointed out that the outer part of my lung was not showing typical Asbestosis damage but there was more white flecks the lower down my lungs in the centre area of both and then the grey splodge where my Diaphragm has failed.
He has now sent me for another up to date xray and a radiogram to see if the lung is pushing on my heart. He has me down for another visit in 3 months but said if the xray shows anything unexpected he will get me in sooner?
I asked if it was okay to fly and he said that if I was going to fly ask for an o2 test and they will be able to tell me if I need o2 while flying.
It just a shame that my GP's would not listen to me or my cardiologist for 12 months or more to get this far.
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Offcut
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Offcut you do seem to at last have found a good consultant...its so annoying that your doctor was not more supportive.
I am not medically inclined so cannot help you with any interpretation of your stats, but at least you now seem to be in good hands
Do take care of yourself , I wish you luck with the dieting ( tough I know)
Do keep us informed about your progress, especially how the diet is going, as sometimes it helps to have to 'report' to someone how much you have lost...a kind of incentive
Hi there Offcut sounds like a really good informative appointment that you had,must have made you feel a little easier? Isnt it frustrating when a pro cant admit to not knowing something like our gps sometimes.Lets hope your xrays are good and no real change eh? Takecare Janexx
it has so frustrated me that they would blaim everything on my heart condition even after my cardiologist said it was not my heart causing my breathing problems
So good that things are finally moving along for you offcut. I have had problems trying to convince my medical team about certain things over the past 12 months and they have finally listened to me, result - I have been feeling better, not a lot but anything is good! Andy
Glad you have found a good consultant who has listened to you and given you good advise. Take good care TAD xx
Hi Offcut, glad that you have some answers to your questions, just annoying that GP didn't listen too you, sounds as if they have you on the right road now,all the best.xx
What great news for you Offcut fingers crossed things will move fast and it benefits you. At least you know you will be able to fly with help. Take care. X
I think the thing to concentrate on here is that you now know what you are up against and will be getting the necessary treatments/medication from here on in. Knowledge is power and I wish you all the best. xx
That is so true. I know my lungs will not get better but there may be things that will help me move on with the problems it will throw at me. All I wanted was to be taken seriously I have not stopped working for fun.
I have a problem with swimming I used to love it but with the Paralysed Diaphragm I find it hard to breath when I swim now It is something to do with my arms in the swimming action
When I wore my trunks on Spain's beach they kept rolling me back into the water
To help things a long as soon as I get to a certain level on treadmill my stats drop right down and I get a cramp in my calfs. Which the PR nurse told me that was my body pulling O2 to my vitals. I seem to drop very quick but recover once I stop doing anything past a light walk.
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