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Warning: long post ahead 😉
I just got out of the lung clininc, and have now ruled out Asthma. This means the doctor will be telling me that I have mild COPD, probably Emphysema with some Chronic Brochitis. I write this post to visualize my plan for my self, to have some input from some of you and maybe inspire others.
About me: Male, 47, Married with a daughter of 21 and a Son of 4.
About my lungs:
Raw data: FVC 120% of predicted, FEV1 0,69. This means I have slightly larger lungs than normal, but the air I can blow out in 1 second is only 69% of the content where as my peers (same size, age) can do about 82%. This meand that I have a lung function of 69/82= 84% of predicted.
In EU as I understand it COPD is defined as Fev1 0,70 or lower when you are lower than 88% of predicted. And as Astma, cancer and other things are ruled out, and as I have somewhat larger lungs than my peers, Emphysema is most likely to be it.
My history of symptoms:
I Smoked from 16yo to 28yo. I stopped because I had a cough and the doctor told me it would only get worse if I didn’t. Since then I always did clear my throath and cough a bit more than others. A little morning clearing most mornings the last 10 or 15 years. I had some panic attacks in my life due to anxiety. Now it seem to me that most were triggered by feeling of SOB (Shortness Of Breath) that I most often got scared were a heart problem. A few time in hospital but my heart did not show any problems.
In 2010 I injured my knee skiing. It left me lying for quite a while – and because my lungs were not ventilated enough, I caught my self a bad pneumonia. I cought my guts out for months afterwards. I had my lungs exrayed but no problem.
All through the time I were with my current wife, I have been coughing somewhat. A few periods with SOB but not constantly. When our baby started in institutions 3 years ago we had a tough year with all kinds of illnesses all three of us. I were always clinging on to the coughing a bit more than my wife and kid.
Last summer I had a little SOB so I called for a “general check up” at my GP and also had a Spirometri. “All well” doctor said. But problem were that not being used to doing Spirometri, they did not “cheer” me to continue blowing – so instead of FVC of 120% of normal – it only registered 93% of normal and thus a perfectly good FEV1/FVC ratio.
Last year in October I were ill again coughing and spewing – and again in November – and December…
Went to my (new GP) as I now had SOB, coughing and more productive cough than earlier. And …. Here I am.
First …. I panicked. My anxiety still gets to me when I feel SOB or some kind of symptom. I have a long way to travel in terms of accepting that. However – I am a proactive kind of person so I have to see a future, have a plan … and so I started researching. It resulted in plan I call (warning: it sounds a bit dramatic) “ 10 years worth dying for” …. I am NOT going to die in 10 years or 20 years BUT – I want to to make a plan that is for a foreseeable future, seeting out how to maximize my life quality, meaning of life as well as reduce progression to a minimum. Here is the physical parts of the plan. In terms of the Meaning and OoL have a look at positive psykologi and Martin Seligman!
Please bare in mind this is what I could find from PUBMED and other public ressources – and as seen by a newbie to the COPD world.
From various reports on the PUBMED database I got some numbers that typical reduction in capacity per year can be anything from 20ml to 100ml in average. However for Stage 1 non smoker 40ml per year seems to be a good average – a little more if you have more symptoms. So have a target of 45ml per year.
When I am 58 - in 10 years time – this will put me at 77% of expected. Should it be all bad and I deteriorate with 80ml per year I will be at 70%
When I am 70 the numbers will be respectively 70% and 54%.
These numbers give my worried mind a bit of peace. I read many peoples posts in here with good and active lifes with even smaller values.
AND – I have a hope that something will happen on the treatement front in 10-15-20 years… More about this later.
To achieve a minimal progression, there are 3 areas I consider EXERSIZE, FOOD, TREATMENT and BEHAVIOUR
I did not find too much evidence to back that it actually reduces progression. The best I found were research that made the coupling Exercise reduces symptoms => Less symptomatic ppl have slower progression rates. However what is 100% is that you get better QoL – you optimize your current lungfunction, your trained body uses less oxygen (especially the big muscles in the lower part of your body) and will then ease the feeling of SOB and last but not least a healthy body have better immune defense and thus fewer acerbations. Also, stronger upperbody will help with actually breathing.
I will be on a regimen with daily activity (walking 5-6-7-8 km) weekly Running and Training (twice a week).
Redwine will stay in my life – Resveratrol is an antioxidant that helps prevent the harmful oxidation of the lungs (might be marginal but the excuse is good). In general just good, green food with the occasional fish, chicken or even a stake for the right occasion.
Lots of water. Less Sugar. This is nothing I have researched too much – just common sense. I will look more in to this later.
For the next 10 years – first I await the doctors recommentdations but this is what I found:
All the vaccinations available … this is a no brainer 😊
A bronchodialator with Tiotropium – e.g. Spiriva. Where it does not affect progression according to the UPLIFT study - only improved QoL for stage 3 and 4 patients, a Chinese study seemed to achive significant lower progress in Stage ½ patients over a 2 year duration over the control group.
Cineol1.8 – Eucalyptus Oil „Cineole has mucolytic, bronchodilating and anti-inflammatory properties and reduces the exacerbation rate in patients suffering from COPD”. A study with 250 participants were given tablets during the 6 winter months, and achived 40% less acerbations than placebo group and 5% improved FEV1
The next one I need to talk to the Doctor about: NAC (N- Acetylcystein). Short term used to help with mucus and during acerbations. No problem there. But high-dose long term studies seem to indicate reduced acerbation rates BUT if one is so unfortunate to get lung cancer or melanoma – the dicease will spread much faster … So this is really a thing to consider….
Last but not least: Where there is no regenerating cures today that helps regrow the lung, My 10 year plan is made also in the hope that there in 10 – or 15 years – will be significant improvements in this fields.
Stemcell research are being made – and currently there is no effective treatments. There are more phase 1 trials on going – some habe shown good safety of stemcell treatments – but no efficiay in human trials yet.
When it comes to animal trials the picture is different – there are more animal trials that have produced significant regrowth of lung tissue. This could help reserachers understand and possibly find alternative strategies for humans. But it will take time – and nothing is certain because mouse and rats are generally better at regeneration tissue than humans.
Besides from using actual stem cells a number trials are also looking at medicine able to boost our own stemcell productions/activity ….
PLEASE PLEASE PLEASE do comment on your thoughts, link to new knowledge and let me know where you disagree with my assumptions
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It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.