In the past 2 years my O2 exchange rate has dropped from 67% to 52%.
I had no lung problems before I was struck with Pneumonia in 2008 - which put me in a coma on life support for 5 days (I was not expected to survive) - This left me with a couple of lung problems - namely Bronchial Intersitial Lung Disease and Chronic Bronchitis - 2 major biospies confirmed this. - (no asthma or COPD)
Those were the facts until I moved to a new area - earlier this year - I had a CT scan and my new 'consultant' simply said everything was clear - except mild Emphasyma (excuse spelling), I was then discharged back to my gp.
Since then more than 2 reputable sources have told me that once you have BILD - it does not simply go away! - Especially with the drop in my O2 Trans rate - Can anyone help clear this up please - I am totally confused ( As normally happens with these things) - Thank You so much.
Point 2 . With a documented Transfer rate such as mine - what would be expected in regard to activities / walking etc?......
I struggle all the time - I always end up so tired I fall asleep, slur my words and begin to trip over my own feet - Is this usual??
How can I then get this message over to others - Doctors, my family, etc???
I am so grateful for any and all help
D
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Duchess-82
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I'm afraid I don't know anything about BILD, I have Alpha 1 Antitrypsin Deficiency. My gas transfer is at 62% so an improvement on yours. I'm okay walking round and can keep this up for a long time (miles) but do get fatigued and a bit breathless with increasing exertion - hills, hoovering, carrying heavy shopping. My heart rate tends to go a bit crazy at these times too 160+ bpm. It sounds too me like your body needs more oxygen than your lungs can supply in certain circumstances. Your new consultant sounds a bit slap dash. Do you live a long way from your previous consultant it may be an idea to try and get referred back to them for some proper care. I do hope you get the help you need.
I cannot be referred back (I wish I could) My previous consultant was in Kent - I am now in Devon - She left the area around the same time I did - I know what you mean by 'slap-dash' - very! As for heart rate - mine sits around 110 at rest - much higher on any exertion. I struggle now to even hold a conversation for more than 10 mins without getting breathless - The 52% is a drop of 12% in 2 years - it was 67%, a year before that 73% - Things were easier then.
Thank you for your advice - I wish it were possible and you kind words. I hope you too get any and all help you need and that your O2 rate does not drop any lower.
I think your GP needs re-educating; citing costs as an excuse not to treat you properly, is in my view a dereliction of duty. When I had an issue with my gp who didn't want to refer me to a specialist alpha 1 consultant because of the cost I did the following... I checked the NICE guidelines for what my care should be for someone with Alpha 1 antitrypsin deficiency. I researched the condition so that I knew way more than my gp and most consultants. I also sent for my medical records from the hospital. It cost me £30. I have a copy of my chest xray, CT scan and the notes written by the consultants I saw. I took a copy of the NICE guidelines to my GP, which state that someone with my condition should be offered the opportunity to be referred to a specialist clinic. I eventually got that referral and now have my condition monitored and managed by someone who understands Alpha 1 deficiency.
In your place I would get a lot more demanding with your GP. Read up on and understand your rights. To start you off, I've attached a couple of links below that may be useful - they identify what your doctor should be doing to investigate and treat your breathlessness.
Insist on being referred for a pulmonary rehab course. They will help you develop ways of managing your breathing issues. They will also monitor you very closely and do an initial assessment. My mum had a diagnosis of emphysema for several years and was treated with inhalers. After an assessment to go on a pulmonary rehab course she was diagnosed with heart problems requiring treatment and a different lung condition to emphysema! She has seen more heart and lung specialists since the rehab than in the several preceding years. She's on medication to deal with her heart issues and is now able to breath much better. Your high resting heart rate should concern your gp.
You are going to have to be your own advocate here. Make sure your GP realises that you are going to push and be a pain till s/he does their job properly. Make sure that they know you are documenting all and everything that you've told them and asked for. They may be more co-operative if they realise there may be some comeback on them for their failure to act. If your current GP still won't help you, move to a new one. Insist on a second opinion re the consultant, preferably one with experience of interstitial lung disease. When I looked up interstitial lung disease, pulmonary fibrosis was the main condition that appeared, though I believe there are others - if this is what you have then it requires proper management.
Just a thought, but it may be worth asking to be tested for Alpha 1 Antitrypsin deficiency as well, just to rule it out. (in the first instance it's a cheap simple blood test to check levels and the results are back in a few days. It's a rare genetic condition but if you have it it could help explain the rapid decline in your gas transfer levels. It would also give you additional ammunition re your care.
Do a search on this site for other posts mentioning gas transfer levels. You will then be able to see a great deal of historical info on the subject that may provide help and assistance. Other terms to search are the technical terms - KCO and TLCO.
I wish you the very best of luck in all of this - let us know how you get on.
Thank you so very much - You have given me a lot of info - I have copied some to a Word Document and also found a site regarding the possible repercussions of the Pneumonia (2008) - according to the site you gave me - my symptoms although quite rare - are indeed linked to that event!
I will keep you updated - Seeing my GP (armed with info) Next week!
Pneaumonia was a big blow to my breathing too in 2005.
Have 32 percent lung capacity....which I struggle to keep....however have not deteriorated in 10yrs. Any differences I expect are age related...
Blood gases are 91 to 94.
Certainly limits what I can achieve. But, lack of activity does limit lung fitness and a balance has to be struck.
After colds/chest infections there is certainly a week or 3 of build up due. During that time, talking, falling asleep and exhaustion during the day is usual.....
Thank you for that info - I am so tired all the time, the heat is a nightmare - moving around has me tripping over my feet and barely able to speak after what used to be a simple task - sweeping a floor - It just seems impossible for most people to understand - and without my GP backing I dont get much help (My GP insists that any cost is too much) - this does not help in the least!
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