I (38/m) was recently diagnosed with emphysema. I have not taken any PFTs, so I do not know the extent. The original (ER) doctor told me to quit smoking to stay off oxygen when I'm 80, and a general practitioner said I am 'more moderate than mild'. I was diagnosed with an x-ray and verified with CT.
I live at altitude, and I weight lift (heavy) every other day and do cardio on rest days; I suppose I get winded, but who doesn't when bodybuilding? I requested a rescue inhaler for 'just in case' purposes, but I have not used it and have never felt a need to use it. I think that the options of moving to a lower altitude (i.e., increasing oxygen 20%) and using bronchiodilators, combined with my current ease of breathing and COPD normalization upon smoking cessation, I have many years. I hope so, anyway.
I have also done everything I can think of to slow progression. I quit the moment I found out, and I already got a flu jab. I started taking so many supplements (turmeric, anthocyanins, quercetin...about 20 supplements correlated with slower progression) that I gave myself caretonemia. I bought a little breathing exerciser to build my intercostals. I can breathe great, I'm in better physical shape than I have been in 10 years, but I could use some help with my mind.
Like many newly diagnosed, I read about the five-year mortality and flipped my stuffing. Luckily, I researched for months and learned that 97% of people with emphysema make it to 64. Those statistics were compiled before the Zephyr valves which may add years, and it is likely that there will be many advances in COPD before I turn 64. The threat of emphysema no longer has the sense of immediacy, but I am still worried about comorbidities to the extent of hypochondria.
Some of the comorbidities, including the one who shall not be named, cause almost instantaneous...non-livingness. While most of the cases for the comobidity I'm most concerned with occur after the age of 64, 10% do not. Further, 1% of COPD patients get that comorbidity every year. There is a correlation between severity of COPD and the comorbidity, but that correlation is not enough for me to let my guard down and live my life, if that makes sense.
I am having a hard time planning anything, and I check my fingernails daily. I get these day-long panic attacks like I have never encountered, and I need reassuring statistics to ease my mind. Does anybody have any kind of statistic that suggests I should not be as worried as I am? I'm still in my 30's and terrified because I have two preschool-aged children.
How was I ever so bold as to smoke knowing about that one particular comorbidity, was I really that stupid? I guess I thought every case of that comorbidity occurred after 64. I thought I might shave off the last 10 years of a lifespan, not 40 years.
In some ways, it seems as though this diagnosis is a way for the universe to force me to accept my mortality. I think to myself that, even if I can assure myself of safety with regard to comorbidities, I could still have an aneurysm. In a way, being forced to accept mortality is a good thing; that is, as long as I get to live awhile longer to accomplish life goals. I appreciate all who read this lengthy post, I'm just looking for some factual reassurance that I probably have a bit longer to finish my masters, write that book, raise my children, and so on...
Hey there. I'm right there w you, 38 years old loads of plans etc. I have not been diagnosed but I have my set of concerns. There are great people in this forum who are going to give you great advice. My advice is to never smoke again and keep it away from your babies. Keep up the exercise and living your life. You will see, there are people here dealing with worse but they are living. And they are going to help you. I have that hypo problem too. Looking for clubbing are we ? Yes I check myself. Weigh myself every day, I have a pukse ox check my spo2 bpms and I'm not diagnosed! Don't feel bad bro, forgive yourself for smoking when you can. Take good care of yourself and those babies. Plan in being around, I think the moving part is a smart move!
when is pft? schedule that to get you some baseline numbers. dlco is important for your diagnosis I believe plus the fev
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I have not scheduled any tests because 1), I can still breathe adequately while doing rigorous exercise at altitude; and 2), until I graduate with my masters, I do not have insurance. The expiration on my rescue inhaler (that I do not use) is in about one-and-a-half years, and I was planning on taking PFTs when I go in to get a replacement.
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ok makes sense. I think with your PFT you will know more about whether you are more mild or moderate etc. Good luck!
PFT is Pulmonary Function Test. As well as spirometry it has two more sections: looking at gas exchange; and also total lung capacity. Most GP practises do spirometry which is an excellent test for obstructive airways disease.
Hi there lovenlife, I can't give you any percentages but would just say, once you have gotten over the shock of being diagnosed and come to terms with what it may bring in the future, look for the positives. I myself have just be told i have severe copd at the age of 56, i didn't have a clue....but the positives....you are young and have quit the cigs so that will slow down the pro gression of the disease, had you not found out you probably would have puffed away for a few more years and caused more damage. You are fit..so another plus. For myself i just carry on with my life doing the things i enjoy doing and am able to do, i am no worse since being diagnosed, if anything getting more fitter because i won't let this illness define me. Also i am a great believer of the power of the mind and PMA, being an holistic therapist i am treating myself as i would a client with love and care xx
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Thank you, Suki01. I was diagnosed about six months ago, and I am only now coming to terms with it. With how much anthocyanins are proven to slow lung function decline / COPD progression (i.e., more than the entire differential between COPD and normal lungs), I am no longer very worried about the emphysema. The comorbidies are what I am having the most trouble with psychologically.
I was terribly worried about emphysema until I read that 97% make it to at least 64 (and 90% make it to 74). I am kind of hoping somebody out there has similar information regarding the scariest comorbidity. If I can put my mind at ease regarding that, I think I can continue with my life. Until then, my subconscious reasoning is that there is not much of a point in doing anything because I cannot reliably envision myself more than two months from now.
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Besides death, what is this scary comorbidity you are worried about?
72 next birthday, diagnosed (CT Scan) with "Severe Emphysema" March this year, despite having quit the fags 4.5 years ago, fighting fit thanks to light daily exercise, really good (thanks Hun) diet, chucking more rockery stone around the garden with a vigour I don't think I had 10 years ago. So 'LovnLife', you "can put your mind at ease"!
Once you have your full PFT results, you may even find, like me, that your 'COPD' status is 'mild' or 'moderate', so how can they amagamate that with 'Severe' on the Emphysema, which is only ONE of the 'GOLD' definitions under COPD?
I want to get that book that was written by a man in about 2012, who cured his 80-year-old Mother of Emphysema by treating her lungs for fungus. She was so bad - could do nothing - was on Oxygen 24/7 but cured completely after 6 months of anti-fungal medications and a special diet. She apparently didn't need to use oxygen at all anymore after being healed. I've also recently read an e-book written by Al and Jim. They used a specific mix of food grade hydrogen peroxide to "cure" emphysema and COPD completely. Yet we're told there's no cure for COPD.
I cannot say what astaraxine is. I went supplement crazy when I was first diagnosed, and I therefore have a bottle, but I am not taking it. The reasoning must have been that either 1), it interacts with supplements I am already taking; or 2), it is not good for emphysema and-or has negative side effects.
Currently, I am taking a multivitamin (there are advantages to vitamin A and vitamin D3 in high doses, but I turned myself orange with beta carotene and therefore reassessed); turmeric, quercetin, resveratrol, fish oil, and MSM; taurine, epicatechin, NAC, beta alanine, and L-Carnitine; and a multi-berry supplement (amazon.com/gp/product/B008O... and blueberry supplement without lutein (again, turned myself orange). If I catch a cold, I let the stuffiness build up for the first couple of days, then take a cayenne supplement that clears everything...I cannot state how that would work for chronic bronchitis, but it works wonders on colds.
The study for lungs and anthocyanins used blueberries; however, there are multiple types of anthocyanins. The all-fruit supplement covers all anthocyanin types, and blueberries assure optimal lung function. You can take anthocyanins in individual supplements (i.e., cranberry, blueberry, cherry, etc.), but you will almost certainly get too much beta carotene and look like a muppet; there are not any other side effects, but orange looks silly, and you will be looking at your eyes for a month to make certain you are not jaundiced).
My strategy is to interrupt the pathogenesis of emphysema. The two main pathways are inflammation and oxidation. Just about every supplement is an antioxidant, and there can be side effects to taking too many antioxidants. Natural anti-inflammatories are safer than NSAIDs and can be combined.
Turmeric everyday is a must-must-must, and I generally take it with quercetin. Both have been shown in studies to decrease chronic inflammation. While it is anecdotal, my workout efficiency improved when started I taking turmeric. There are multiple versions that increase bioavailability; turmeric is not easily absorbed, and I therefore take it with a smidge of black pepper (increases bioavailability 1000x) and quercetin (300x).
MSM is optional, though people say it is a super-supplement. I read somewhere that it increases oxygen uptake and therefore provides an oxygen buffer of sorts. Beta alanine is similar.
I also fast intermittently. It is said to increase HGH and balance insulin, and it is the only strategy that moved me beyond my 18% body fat plateau. Intermittent fasting is said to decrease inflammation and increase autophagy. Whether or not increasing autophagy is good for emphysema is up for debate, but the 2016 nobel prize in medicine was awarded to the man who showed the benefits of autophagy, and the anti-inflammatory affects are said to be profound.
I hope this wall of text helps somebody. NIH.gov is a wonderful resource when learning about supplements and life strategies.
Hello RedSox. Yes, I living in mile-high Colorado. I have read that an anti-inflammatory diet with plenty of water is healthful; basically, anything other than NSAIDs that lowers inflammation is good. Aspirin can halve the progression, but it is not ideal for me specifically. I fast intermittently, and I am currently investigating whether or not the autophagy and HGH increase caused by prolonged (2-3 day) fasting is good for emphysema (prolonged fasting is either really good or really bad, and I am still determining which). Thank you for your positivity
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Lovinlife, the big C can be beaten....i have done it twice....just get on with living your life and enjoy it.....many people die from incidents out of their control, and i for one plan to die from something else other than copd!!. We have to go with something, and to die with a healthy body is a sacrilege x
Let me tell you categorically, being diagnosed with Emphysema has saved my life!
I was classed as a high risk for Cancer and as a result had regular CT Scans, watch and wait, sure enough I developed Lung Cancer. It was detected at an early stage and very treatable.
Surgery was not an option, with 31% lung function, Cardio Arterial Disease, Hypertension and Peripheral Vascular Disease. So I underwent SABR radiotherapy which has been successful. I still have to have follow up scans for another 4 years in case it returns and have another dozen equivocal nodules that are, so far dormant, just sat there doing nothing.
Fear not the big C, if it does rear it's ugly head, there is an excellent chance it will be spotted. If you keep worrying about it you will make yourself ill.
As far as the Emphysema goes, the same advice, do not worry. I am 68 years, still work full-time, exercise and live a good quality of life. Yes of course I get short of breath, so do the healthy, but I have learnt how manage it and grown used to it. Of course I do not run marathons, but I handle normal living and work without too much effort. I will also be skippering a sailing cruiser in May taking the family on holiday. So you see things do not have to be that bad. Just don't give in to it and keep exercising is my advice.
You sound like my wife. Her mind is always racing to the worse case scenario. Get something from your Dr to ease the anxiety. High anxiety isn’t good for your health. My thoughts are that if you don’t smoke and you exercise you can live a normal lifespan. None of us are going to live forever. We can die from tripping off of a curb. We can’t obsess of what might happen because we simply don’t know. Your not that bad with the numbers.
Hi, sorry, I was quite shocked by your post. You're young, you need to be out enjoying yourself without all this worry. I think someone mentioned seeing your doctor for something for anxiety. I recently had citalopram prescribed and find that works pretty well. However - and this is the bit u should pay attention to. I'm 59. I was diagnosed with COPD 25 years ago. I've had TB and various micobacterium. Last year I was in hospital with pseudomonas and pneumonia which is way worse than TB imo. Horrible and took me a year to recover. I will never stop taking the once a day doxycycline again. I believe I wouldn't have gotten ill if I had stayed on it. On Monday night I saw Melvins at Camden Palace. I can walk about 10 yards but it doesn't stop me. I've done pulmonary rehab (4 times) and know lots of exercises and breathing tricks. Many of which I learned on here. My advice, stop worrying. What you have at the moment is mild. Even when it's severe like mine it doesn't mean your life is over. I have no intention of dying just yet. My lungs may be 87 (typical age u would be with this condition lungs) but I fully intend to catch up with them. See your doctor about anxiety meds. And watch out for buses when crossing the road. Good luck.
Are your lungs 87 ? Your a character. Thanks for a very uplifting post to aspire to. (must admit I worry at times) Annoying as I was a very outdoors and strong woman (no more ziplining). I too was thinking of 30 as very young, with children, also a very worried mother. I think the worry is the hardest thing to address. I'd love to give you the worry relief cure, all I can say is life goes on for me and I have accepted my diagnosis. I study a degree at my old age of 56, so I better get to finish it, longevity wise as it is damn expensive More a sitting exercise than the past. I don't worry about the progression as such, as it is out of my hands in many ways (and our mother here does super things for her body). I'm happy with today. I have great friends and as my mum used to say, 'Que, sera, sera'. Look after the family and enjoy everyday. Inspiring you are Dianemc01234 !
Hi LovnLife, dont worry about what maybe, enjoy today. You are young and fit and now know the dangers so can adjust your lifestyle. Be positive and thankful. I say thank you everyday, smile, laugh and enjoy life. You could be run over by a bus but wouldnt stop crossing the road. Have fun with the kids and stop looking at statistics, they are never right anyway.
Whats up stop worrying im 85 and still using my blue badge more concerned about those cataracts i've got to have removed after Christmas first diagnosed with Emphysema 2001a
after years of smoking even those Navy fags try a Nebulizer don't tell the Dr
I understand where you are at too. I got hospitalised at 4am boxing morning last December for a week with chronic bronchitis 83% sats and having never been ill in my life this knocked me for 6. I was so ill I physically was incapable of smoking and after 44 odd years of doing so have finally give it up due to the shock and fall out from this one and only episode. I had tests for everything , diagnosed with COPD, finally got them to test my throat and found I have a nodule on vocal cords. I kept having mega hot flushes and felt I was at deaths door, and feel that the steroids, anti coagulants, antibiotics and inhalers i didnt actually need in the end and clearing out nicotine have realigned my body a lot and still have not returned sleep wise to my pre hospital self. Taken me all my time to adjust mentally to being diagnosed, giving up the fags , adjusting to being a non smoker and got a fit thing on my phone to monitor my oxygen and walking. I just managed walking 43 miles in 4 days in Barcelona with my 29 year old son, so I now think I have cracked that anxiety side as my mammogram came back clear too. Onwards and upwards - just say " today is/ was a good day" and keep moving forward.
Having lung issues at such a young age is often misunderstood. One thing I have learned is that despite being a rare occurrence you are not alone. I’m 41 and in the mile high too. Still no firm diagnosis for me but they are working hard on it at National Jewish.
Hello Hidden what a Very interesting post, firstly I am 75years old,I smoked for 50 years, I use All the usual inhalers, i us ambulatory Oxygen 1 litre. I am at this moment taking Doxycycline ABX after A very heavy cold it is lasting too long, therefore it’s a consultation with my Doctor, I Never visit the Doctor I request repeat scripts. And a Call after surgery.
You sound absolutely of the right frame of mind to have a Very Long and healthy,successful life. Best wishes and do stop worrying.
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More a sitting exercise than the past. I don't worry about the progression as such, as it is out of my hands in many ways (and our mother here does super things for her body). I'm happy with today. I have great friends and as my mum used to say, 'Que, sera, sera'. Look after the family and enjoy everyday. Inspiring you are Dianemc01234 !
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