Since I found out my chest x-ray showed emphysema (on oct 31, a Halloween to remember I guess) I've been reading anything and everything about it. A few nights ago I saw a post where someone said their spirometry had improved. Now I can't remember what site it was on but I'm curious if others have experienced this. Is it possible to make our lungs stronger when we have emphysema. I can't help this mindset that I want to beat this, to somehow force my lungs to work the way they should, the good part that's left to make it stronger. I haven't done my PFT yet and I'm anxious to know my numbers. I just can't help feeling there's something I can do to be "normal" again. I'm struggling with feeling different about myself, like I'm somehow damaged goods, not whole anymore. I would love to hear any personal stories about improved lung function or even lung function that remained unchanged for many years. Still trying to wrap my head around this.
Improvement on spirometry - Is it pos... - Lung Conditions C...
Improvement on spirometry - Is it possible?
Hi you are not damaged goods, you have got a lung problem. You can never be 'normal' again ie there is no cure for emphysema but you can hold it steady or even improve with a healthy lifestyle. Exercise is very important. When you exercise you build more muscle and the more efficient they are the less oxygen you need. In other words be as fit as you can be and you will use less oxygen which will help with your breathing.
It is common for your lung function to improve once you are using oxygen more efficiently.
Please don't google indiscriminately as you will just scare yourself silly, stick to recognised sites such as this one. x
Well said Bev xxx
xxThank you!
I think we all feel 'different' after diagnosis Kaliina, I know I do but, I imagine people with any new, chronic illness diagnosis would say the same. I think it's the result of the shock as well as a sort of mourning period for what we think we've lost that we took for granted - our health.
It does get easier to accept.
Lot's of people do find their fev1 improves, by varied amounts after stopping smoking or getting fitter, because we might have unwittingly allowed ourselves to decondition when we were unaware we had COPD. I know I have, due to already having other chronic illnesses that make exercise difficult.
I've read lots of posts where people have held themselves steady for years, but, there appears to be no real way to predict who will and who won't.
Just follow Cough's excellent advice and enjoy your life, that's what I have finally come to realise and I feel a lot more content in myself for it. xx
Hi and welcome Kaliina,
Good advice from coughalot. It's understandable that you are finding it hard to come to terms with your diagnosis but try not to get too hung up on it, although you are bound to feel anxious.
My Consultant recently said that lung function levels (while giving doctors more information) are less important to the patient than how the disease affects them individually and what treatment they specifically need for their situation. We may all be affected slightly differently, so equally don't get too hung up on numbers either.
You may well be referred for pulmonary rehab (if not it may be worth asking about this) which is a course designed to improve knowledge and understanding of the disease and how to cope with it along with taylored exercise routines to build up muscle strength.
Best wishes
Good morning Kaliina,
I can't add anything more to the answers already given. Look after your diet, water consumption and exercise your lungs.
I have copd and I certainly don't classify myself as damaged. Since being started on Fostair I cannot believe I have copd, apart from the production of some early morning phlegm, but I have taken heed of all the available advice on here. Ask about P.R............ it is a wonderful beneficial course, and we will have no more talk of damaged goods.
x
When were you changed to Fostair Jennifer and what were you on beforehand? Also, do you know if your FEV1 levels have improved since being on Fostair? I ask because I've been on Eklira for approx one year and wonder if it actually does help my SOB. Many thanks
Oh Dedalus, you must think me a right twerp. I cannot remember what the locum gave me that made me so ill before I was given Fostair. I was on Salbutamol only before she phoned me up and then after that awful experience I was put on Fostair with Salbutamol when needed, but the cfc propellant upset me and so now I am on cfc free..... so about getting on for a couple of years, maybe less. I'm afraid I don't take a great interest in my medication as long as it's working. The copd is classed as moderate. I am due to see nurse on the 15th so I'll tell her to do a printout.
I do know I feel on top of the world most of the time, because before I was diagnosed it was hard work walking or working in the garden. Now I can do anything I want to do without any effort.
I do know if I ever come across that locum person again she won't be happy - imagine your prescription being changed by someone you have never seen in your life.
I am pretty sure you would know if your medication was helping or not. If you aren't feeling the benefit -tell your doctor/nurse to change it.
Good luck
Thank you Jennifer - don't think you're a twerp - on the contrary - I'm afraid I'm in the same position - when people ask me what inhalers etc I have used in the past I can never remember! I was prescribed different ones when I was first diagnosed but a lot just didn't agree with me. I've started keeping a record now (better late than neverI suppose). Take care x
Hi Jennifer, I'm reading some older posts. I do that a lot. Actually this ones not that old. You would be surprised how much you can learn if you go back a yr. or two. Now days, there's not many posts you can learn much from. Anyway, I wondered if you got your breathing test yet. You spoke of getting a printout. So how are you and Merlin? I haven't been on much lately. Reading the old stuff. Ruby🌹
Thank you!
Hi Kaliina. I experienced a significant improvement in my spirometry, having stopped smoking for about a month. Whilst the damage to lungs through emphysema cannot be reversed, many have experienced the same improvement. I think there are several reasons why this can occur. Firstly, even a person who didn't have emphysema, they would experience a reduction in lung capacity due to smoking. Stop, and that element would be reduced, although the overall damage would remain the same. Also, from my experience, the sirometry test is subject to technique that can vary the results due to the accuracy of an individual's blowing technique. This is one reason the test is often repeated to obtain average reading.
Thank you!
Hello Kaliina
You have had excellent replies from various members.
Now is the time to change your mindset,... You have a life to lead, go out and live it as best as you can.
Be positive, think to yourself l am not defined by this illness.
It's natural, when first diagnosed to be anxious, and shocked....but you don't change overnight....you are still the same person you were before being diagnosed.
I know you want information about your condition, but it can quickly turn into an obsession, to the point you are wasting your life, worrying about what may happen There are good reliable sites on the internet, this being one, where you are talking to people who are in the same position as yourself, ....they have, been there, seen that, got the T shirt...a weath of good advice, and information, so just ask away.
We will always try to support you....even if you fancy a chat about other matters.
Remember there is also a lot of crap sites, full of doom and gloom...Keep Clear !!
Velvet xx
I excercise daily, take a number of supplements, eat healthily, make sure I sleep enough and my fev1 increased by 7% in 3 months. Am due for next test in two weeks time and am hoping for more improvement.
Thank you I loved hearing this!!
Kaliina I don't remember where I read it either but I remember googling and i found quite a few people online who increased their FEV1 over a period of time by more than i did! So do NOT give up hope - Get as fit as you can by doing excercise every day! And please let me know how you get on! You have age on your side - You CAN manage this! If you are determined to, you will watch your kids grow up.
Welcome Kaliina and l see you have had some excellent replies containing good advice. Please don't write yourself off as you have had quite a shock but can and will live well with emphysema. Follow the advice given and anything you want to know just ask. You are amongst friends. Take care xxxx
My hubby has asbestosis and yes we have managed to improve slightly his lung function, we have changed what we eat and I nag to make him exercise and we were also lucky enough to be able to move to a clean air area. For the last 8 years he has been seeing his consultant every 6 months, the last time we saw her she was so pleased that it was lengthened to 10 months.
Thank you!
mine improved on the nx spirometry from the previos one I had mild copd the doctor said I don't have ashma any more just copd then the clinic said I still had ashma to also try my breathing exercise also try to exercise your lungs very deep breathing I am a very youn 60 I still work as a tree surgeon I go the gym I can jog up ten floors for some one with copd I think that exelent if you can walk go on a fast walk if you feel your chest it getting tite try hold the fast walk up deep breathing and pursed lips
Thank you!
all so think positive tell your self every day your lungs are healing with every breath you take its amazing wot your mind can tell your body to do when I got diagnosed I went on internet it was all doom and gloom even the nurse in doctors told me it was going to get worse I went in their feeling great after I reported her for her conduct I said to her that's like teling some one whos just been noked down by car sorry mate your going to die as their laying in the road terrible attitude should not b in the medicail proffesion you gota think positive every day don't look it up on internet about copd it will just make you worse when you feel good also if you can afford it have go accupuncher I did 2 years ago its amazing wot it did for me try 6 weeks treatmeanth
Mindset is the way forward look at the positive things. Think of it that some days I will be slower but that is not stopping?
The Spiro numbers vary for various reasons: If you get tested on a warm afternoon on an empty stomach, you'll get a different result than a cold morning straight after a full fry up.
Graphed over a long period they will however trend down. Why? Because even in perfectly good lungs, the capacity deteriorates with age. So even if you can stop the progression of emps, the numbers will still go down slowly.
So- if you are over weight and out of condition (and a smoker?) - you'll improve your numbers by losing weight and getting fit, but sorry to say, it doesn't repair the damage in your lungs, but you'll feel & look better.. for longer...and give up smoking... now.. and live longer!
Oh my gosh I love you guys. I've got tears in my eyes but they aren't from sadness, just feeling emotional and thankful for the support. I've always been a believer of mind over matter, not that I can heal myself, but with positive thinking and a strong will I can accomplish anything. Now I've been knocked down and am trying to pick myself back up. I found a doom and gloom site full of people telling personal stories of how their life and lungs deteriorated rapidly and it shook me up pretty badly. From now on I'm sticking with you guys. This site helps me get through the day and for that I'll always be grateful <3
You are going to be ok!! And guess what? All the exercise & healthy eating means soon you will be Looking fantastic too :).
Please come back and tell us how you get on.
I'll not argue the mind over matter idea, but so many are given the doom and gloom lines probably more to start selling those new goodies you'll be prescribed. The mind over all the "horror" is the biggest hurdle next to anxiety! The first thing to do with those negatives is realize they are not your ideas. Your tears were of happiness?...then that is a better direction. If you want to get this right, it'll take a lot of effort and a lot of your time. You're about to (like Christine-sa stated) discover a new way to see yourself positively in addition to learning a lot of factors. Though I've preferred non-standard methods, there are some points where some of conventional wisdom can help. Conversely (and you'll see this on this site), there's a lot of prescription damage that can also happen. Your job is learn your new situation and listen/observe to your body's reactions to anything you do with it. Once you're past the negative influences, especially those who would rather profit from you, you'll become very in tune with your needs.
A lot of us were just like you when we got the first news. I was depressed for days. You are not alone by any stretch of your imagination and there are many here that will listen. I became fond of this site because there are many who ventured into this abyss on their own and have regained capacity and strength.
I'll
look for your posted realizations. The stories here are wide ranging, from so
many different perspectives, situations and methods. And...in my
opinion, you can "heal yourself" simply by making great decisions and
choices about you. No one has the same working formula...this is
quickly learned. This is where you become your best asset. You could
be helpful to many of us, too!
Again, take good care!
I'm more interested in a holistic approach to be honest as I've never been fond of meds or pharmaceutical companies. Yes medications save lives but if I don't NEED them then I don't WANT them. Since I've quit smoking all of the symptoms that sent me to the doc are gone, other than shortness of breath which has improved the past two days. If you have found natural ways to keep your lungs and yourself healthy I'd be very interested in that. Supplements and the like. Thank you for taking the time to talk to me
No need to struggle. Anxiety is the primary problem. You (and your body) have the ability to adjust. Your damages, not unlike a cut, can be attended to. Obviously lungs are serious, I'm quite familiar. My FVC in May 2013 was 29%, and my FEV1 was 31%. My diagnosis was "moderate" emphysema and bronchitis 3rd stage/bordering 4th. Toadys' FVC is 61% and FEV1 is 64% (a new high number today!). There is a lot of improvement, depending on your damages, and what you do from here on out. Each of us has our own story, but, the odds are you can improve your "numbers" a lot. For a lot of us, it is the beginning of a lot of learning and attention to our previously ignored situations. Again, you're not being cast into oblivion even though it feels like it. There's not quick answer, but you will improve and it will be work. Unlikely you'll get great results quickly. A year from now, you could be quite surprised at how well you can do.
Eat clean foods. Avoid anything toxic where you can (includes treated water), pesticides, smoking/2nd hand fumes, and the whole lot of perfumes/scented products. That'll keep you quite busy! Good rest. Monitor your SPO2 with a finger oxcimiter for +88. Check your overnight SPO2 for low O2 events. Get familiar with your body and how different O2 levels feel and react. But, yes, you can improve. There are many here who have done so.
Take good care!
Luckily I'm ahead on this. When I got pregnant with my first baby all candles and air freshners, perfumes and scented lotions, all cleaning supplies, got tossed out. I do an essential oil diffuser from time to time, no oils too strong for the babies tho, and I clean with white vinegar and baking soda, open my windows every day to air out the house, and so on.
My issue now will be diet and drinking lots of water. Even tho I'm slender I'm a junk food junkie and I hate water but I gotta get this under control. When you say treated water I'm guessing you mean what comes from the tap. What kind of water do you prefer?
You have a lot of insight and please share it with me any time!!!
Hi Kaliina,
Busy work day ahead. I have plenty (as obviously I get wordy) to say, but that'll need to wait until later today. I still hold essential oils suspect. I have some and honestly, I can smell them before I open them. Part of my curious nature to check things out!
I've got a long list on the food, water and nutrition side of life. I loved fast foods, I loved all the "bad" things....and I am still amazed I went as long as I did before my lung crash. I'll not be so ignorant ever again. But...I had a blast to be really honest, and I'm starting to have a blast once again...humility and humor are my assets!
I prefer clean water. Glib statement. I like well water, but even then...filtered heavily through a thick carbon block! More on this later. Any water treated with gases...so even bottled water is treated with plastic gases by exposure. Chlorine, bromine and the lot. Forget that. Lugol's Iodine (food grade) is the only additive I'd use. I use it in the trough water for my cows, too. One drop per 50 gallons. Give it an hour. Besides, every cell in your body has, and needs, iodine. Don't short yourself. More homework, look it up. And, maybe a gallon a day of water when it is really hot, but we don't need personal hydrators and heavy water intakes. Most desert dwellers will drink less than a gallon a day. "We" sweat soooo much because (in my opinion) our poor bodies are trying to detox so heavily they can hardly keep up...and detox through the skin is the fastest route out for water. Your kidney's already have a tough job, don't beat them to death with personal hydration floods.
More later, but thank you for the reply!
Cheers,
Bob please be my new best friend, I need you lol. I actually ordered some lugols iodine from Amazon months ago bc I read it was great for health and hair, but I was too timid to start using it. I agree with you about the oils, I've used them sparingly and never on the kids. I have no access to well water so I've been researching the best filter for my tap, but it's heavily chlorinated and can't even pass inspection each month. At a loss there for now, I'm drinking bottled and feel guilty bc it's in plastic.
I'm willing to take every tiny tidbit of info you want to throw at me. It will be beneficial to my kids as well to clean up our diet and drink more water for sure.
As for supplements all I'm taking right now are two of the kids organic gummies a day lol just bc it's easy and all I've got. I've read extra vitamin c & d could be beneficial and the last time it was checked my vitamin d was low, maybe something I need to discuss with my doc. What are your thoughts on supplements?
Also how do you feel about the flu and pneumo shots? I've never been a fan but it seems to be something most people with lung disease are adamant about.
This is all so crazy I was big time into clean living after becoming a mom and then life got chaotic and stressful and next thing I know my kids are eating potato chips and I'm outside sneaking a smoke!! Ahhh so now back to square one.
Looking forward to hearing from you!
--Kali
Hi Kaliina,
My pre-healthy story was about like yours...and I loved all the "bad" stuff. Smoked 35+ years, loved potato chips, packaged cookies, candy, fast foods....on and on. Loved all of it. Hardly sick for the first half of the century. I'd bet the majority of us here have lived that same consumption trail. Though I elected to not have kids, my wife has 4, and the youngest was one and a half when my wife and I first started dating.
Water...in my opinion, the best thing you can do with treated water is air it out for a day and then filter it through a carbon block or cartridge. Even well water can use filtering as I'll explain below. I worked on a carbon "column" whole house filter unit, which also reduces/eliminates bacterial colony forming units (CFU) which stems from a dental water treatment project my dentist (now deceased) originally developed. I further took the process to use copper and silver into an economical means of "plating" onto carbon media material. The whole idea was to reduce the cost of home (and industrial) water filter cartridge costs. I have managed to reduce the annual costs to about $20 US. The housing is still expensive (all machined stainless steel/no sheetmetal) and heavy (68 lbs/30 kilo), so my work continues. This design is able to process about 1.2 to 1.4 million gallons for the smallest household unit, before a $15 to 20 dollar carbon recharge. There is no plastic in this design. My point here is that water is one of my most critical concerns. Even our rain is significantly polluted...which means our oceans, lakes and even ground water received is likely polluted. Our garden vegetables get doses of this as well and the plants uptake that...and we eat them. We pour millions of gallons of pesticides/poisons and GMO/synthetic fertilizers into our soils. Contaminants are in every corner of the planet. It sucks. So, water is a primary thing to deal with...and filtering is about all we can really do and remain economically intact. Or, go for the cleanest water left ("iceberg" type ice)....but then it's packed in plastic bottles...good grief. Besides, we should leave our pristine polar caps alone (good luck there). Your body has many defense systems which allow us to be able to drink stream waters that animals (including us) poop in and die in, usually without serious problems/sickness. The Maasai tribes avoid surface waters, preferring rain water pools, so it might pay to drink rain waters...depending on the local pollution effects. Like I said, rain isn't so clean anymore, but what else could they do? My take on my situation was a major heavy metals overload, along with synthetics (I make PVC plastic parts and process powder coating items in my shop) for my equipment parts/assemblies. I'm no angel. My business directly supports drilling equipment (not oil or gas) in construction and mining applications, as well as (metals) mining lab assay operations. I make drilling/mining equipment. I'm telling you this so that you understand I'm aware of my own "evils" and certainly my ills likely stem from my own work as well. Our water is always going to be a serious issue. You shower/bathe and swim in it. Our bodies, as best I understand, absorbs water contaminants directly through the skin for the first 14 minutes of initial exposures. The best example I have is when using Epsom salts in a bath. Most directions indicate the 10-15 minute absorption soaking time. No matter how we're exposed, if our body can deal with the contaminants ...there's no problem...until it can't. Our lungs have already given you and I the example of damage/overload results. Unfortunately, water crosses all aspects of our bodies (some would say that O2 and CO2 does as well)...so our catastrophic lung issues are really quite mild when compared to rampant cancers, obesity, HIV, and the obvious escalation of ills out there. Cleaning water, by airing it out is a means to let gases out for a day is a good first step. A drop of Lugol's is good to knock down, as is ounce of 3% H2O2 (food grade hydrogen peroxide) in 50 gallons, for bacterial concerns. And a carbon filtration to trap most all (but not all) particle/gas contaminants. Distilled water is good...but takes a lot of energy that we really can't afford for practical concerns. Taking the Maasai, Kenyan and other tribes as an example, they survive with very little water...and their bodies conserve water far more efficiently than you or I. They are much less likely to have polluted themselves like we have, as well. Our soft polluted lives demonstrate a big difference...wherein the desert dwellers in harsher barren conditions often have amazingly resilient bodies. On your ideas about flu shots, etc., I'd much rather boost my immune system (or unburden it) rather than inject it for "one" bug. I need a great immune system (across the board) and I'll use "food as my medicine". Using my current condition, I ask how a few people I know are having flu issues now. I don't avoid them...I'd rather go through the natural 3 day process of developing the antibodies and add that to my immunity stores. Besides, I haven't had much of anything more than a runny nose once in awhile. As for kids, I'd never (unless it was life threatening) mess with a child's body as there is so much being developed that not knowing the long haul effects of such unnecessary intervention....but I'd now make it a point for great foods (including good water) and completely avoid processed foods. And though I have no scientific proof, my consumption of 30-40% fat raw milk (not pasteurized/homogonized) at about 1/2 to 3/4 gallon a day, the water content (if you think about it) was pre-filtered by my cows...and they get a tiny iodine dose in their water, as well. I'm not thin, nor fat (165 pounds/5' 10") and I drink maybe a liter of water a day, though there are many days I don't even drink water. I get a lot of water from my foods...and my morning cup of coffee...with real cream and a little maple sugar.
I hope my rambling conveys something important...there are so many aspects of any given idea...like water. I probably covered 1% above. I like the long haul look at things. I've got to get to the shop, so I'll likely write you a long list on supplements, later. I must have more than a hundred different bottles of "you name it". Our herb shelves have about 65 different items. I have checked out a ton of things. And, the only thing I've figured out is that a constant diet of any one supplement is not good. If your body does not respond in a week or two in a positive manner...make another choice. Your intuition (not hype or internet opinions) is your best friend. In most cases, supplements (I include herbs in this category) can offer mild redirection, and THAT is exactly what foods do. The trick? Redirection in a positive direction. Keep doing that and it has merit. I happen to like teas, and I have had some negative effects...so a lesson learned...and change it. Nettle leaf tea (and many others) have historically been for thousands of years....duh. I go with the long haul of it and I'd trust a native Indian's opinion that Mulien is good for lung issues...rather than a pulmonary doctor saying Prednesone will help. Mulien seems to work quite well...Prednesone proved only damaging for me.
Thank you for your reply. I'd also like your input for things that you've figured out. I think that many of the posts I see on this site are very helpful too me. It makes me look at things I might not have ever considered, and different angles of those issues I've come across. How could anyone here not try to figure out how to un-cripple themselves? Obviously some have terrible damage, but they are the ones that might have the greatest input for those who have the strength left to revive. I will convey as best I can about the positives I've experienced.
i have the same results ever since i started with copd about ten years ago i had already stopped smoking before that and every twelve months i too have a spiro test and every time it is an improvement on the last so any of you doubters out there about the benefit of stopping smoking when you already have copd it could'nt hurt . it is better than the alternitive .
Hi Kaliina,
Super busy over here. The water thing can't be stressed too much in my opinion. Our lungs and every other part of our body depend on a few key things...and the cleaner...the better. The question is...Would you do less for your health? Mechanically cleaning water, unfortunately, is the new norm. Carbon filtration is the most durable. Pig bone carbon has an astounding amount of surface area over most other carbon medias, so I go with it as the filtration media of choice. A carbon cartridge on a shower head is a good thing as I see it.
The plastics infiltration into our foods is something I suspect is actually a worse situation, as plastics off-gas. Our lungs get plenty of plastic dust on a daily basis. Consider tires wearing out...where does the rubber go?...into dust and into the air, water and soil. Plastics turn to dust as well. Same story. Foods processed through hoses and boxed, canned, wrapped and even coated pick up gasses and particles. The argument of which plastics are safe are safe is outright stupidity. None are. And(!), those of us using canulas for our oxygen...think about sending an oxidizer through a plastic hose and right into your lungs. I've worked on (and use) a canula using ("safer") plastics and have dispensed with the pronged vinyl nose piece by replacing it with an (organic) cotton woven tube that emits the O2 all around it. My O2 numbers generally test a point higher average by using this. I'm not sure why, but I think the added mixing with air outside of the body causes better distribution in the lung. It also avoids the highly concentrated O2 from constantly streaming up our noses. The cotton tube is soft, warm and because it is very flexible, it tends to center and stay comfortably in-place at the nose. When I first tried a canula, the vinyl smell was a red flag...but those prongs up my nose kept waking me up a dozen times a night. Trading O2 for sleep was a toss up. A good nights sleep and a good O2 recharge and my days are stronger and far more productive.
I'll try to comment on herbs in my next reply. Meanwhile, you can search the historical uses of herbs and my opinion is that there's better information there than on the disclaimers found in your average inhaler package. I've spent more than two years both studying and using various herbs. Packaged supplements I'm not so fond of, except in acute uses. If you need a long term supplement, try to fix the reason you're running low on a vitamin/mineral, instead of flooding excessive amounts forcefully. Our bodies are a lot smarter than we. You'll notice the "we" the smart ones can't even make real milk with all of our technologies...but we can lower the nutritional value of it. Yes, this is a stab at the (real) milk ideal I have, but it is one of my foods and sources of hydration and an enzyme/mineral/vitamin. I hardly ever take processed vitamins/minerals/enzymes. I haven't in months.
Lots more to come. I just can't write glib answers!
mine improved after ten sessions of acupuncture.
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