Regenerating Lungs With Emphysema

[ronpeterson]

I am a 69 year old patient who was first diagnosed with emphysema 25 years ago and of the opinion that it may be possible to regenerate lungs with emphysema damage. Am interested in hearing from others who are also open to that possibility. Please post me here or at [e-mail] or go to regeneratinglungs.com

[Parvati]

I am not sure that an improvement of fev1 or fvc would neccessarily signify any 'regeneration' of the lung as these can vary by time of day, time since last meds were taken, weight loss or gain etc. To be sure of regeneration you would need far more sophisticated tests or methods of gaining proof - both of your starting 'lung condition' as well as any possible results gained. That said, I do agree that huge gains can be made in how we feel and function if we are willing to put the effort in. I also believe that we should be exercising to our maximum if we wish to see gains in our breathing and oxygen saturation etc. The advice often given by fellow patients and respiratory nurses to 'pace yourself' or do 'gentle exercise' really makes me mad. Still, back in the 50's they told emphysema patients to go home and rest so I guess they have inched forwards a little since then.

Back to the subject of regeneration - while I don't expect it, I do keep an open mind and having come across the same article re the lady who grew the new (smaller) alveoli, I did add a new item to my exercise routine. I already had a much neglected 'rebounder' (mini trampoline) and having read that the 'cyclic stretch' during exercise may have triggered regrowth in the lady's lung I decided to bring the rebounder into my lounge and use it for regular short bursts throughout the day - the thinking being that the jumping up and down may mimic the 'cyclic stretch' action to some degree. Of course I realise that having two full lungs I lack having any vacant space in my chest cavity but I take the attitude that the rebounding exercise is having excellent full body effects anyway and I can only gain in fitness even if there is zero 'regeneration'.

I was diagnosed five and a half years ago and started my self directed serious exercise shortly after. I have improved fev1 and fvc by about 8 and 6 points respectively (on top of post med improvements gained from Symbicort and Spiriva) though I see that merely as a 'bonus' not a goal - my aim is general fitness to lead a 'normal' life until at least age 85 (I am 59) . My journey started with simply increasing walking distance from a starting point of less than 2 minutes on the TM to nowadays doing steep cliff path walks and speed walking charity 5k's. My best and most recent spirometry results came after adding swimming to the mix last summer. I only do a slow breast stroke as I swim without my 02. I could only do a few strokes at a time to begin with - but stayed in the water for 2 hours and repeatedly swam and rested - I did this five afternoons a week throughout the winter. I have built up to a daily 40 x 25metre lengths ie. 1 kilometer - although I still have to rest for a minute or two at the end of each length for my sat's to rise (I keep small towel and pulse ox pool side). Soon I will exchange my winter swims for more outdoor walking again now that spring is here. Oh - my sats are greatly improved and although I still need 02 for sleep and activity, I no longer need it for light activity. My sats only drop to around 84 - 86% if I don't use it and recover quickly, whereas 5 years ago I dropped into the low 70's simply walking and actually blacked out a couple of times too. I put this down to the regain of muscle and improved capillary networks / density.

My statistics - I was diagnosed age 54 with mostly emphysemic COPD at fev1 29% (post ventolin) . With 'triple therapy' meds, smoking cessation and daily exercise I improved to around 38 - 40% - sometimes low 3'0s due to hyperinflation . As of 5 months ago I now always measure a steady, reproducible fev1 46% with fvc 73% - a huge improvement and far less hyperinflated. More important to me than any statistics is that I can sleep without a mountain of pillows, I can dress and shower with ease - standing up and with minimal sob, I can go out and about and lead something resembling a normal life. Strangely though I still have a 'short day' and find I have exhausted all reserves by about 6pm, after which I do little more than rest on the sofa, read or watch TV.

I do not drive and always walk or use public transport. I walk a roughly a mile most days apart from any exercise, simply to get my food shopping for my evening meal. As a woman living alone I do all my own chores - although at diagnosis I could not dress myself or even fold a bath towel, such was my degree of deconditioning and muscle loss. I will NEVER use a mobility scooter or wheelchair unless it is a temporary measure during/ after hospitalisation. I will exercise every day to the best of my ability - even during exacerbations - until the day I die. Good luck with your exercise and may you gain good results.

(I recently started a COPD blog though I have not really written 'my story' or anything about exercise yet - though that will come. The problem I am finding is that anything more than a short article means sitting at the computer for too long! copdinfocus.blogspot.co.uk/ )

[ronpeterson in reply to Parvati]

parvati my pulmonologist prescribed a new inhaler for me yesterday and today my fev1 increased from 0.84 to 0.97 liters and my fvc increased from 1.59 to 1.92 liters. I mention this because this inhaler is different (I am the first to use it in this area) in that it not only is a long acting windpipe expander but also influences the vega nerve? I had been coughing after every meal and that has already stopped also! the inhaler is by GlaxoSmithKline and is an anoro ellipta (umeclidinium and vilanterol inhaler powder) I got a seven day free trial so far; it is encouraging for me

your work is interesting to me because you are doing some of it at least (the swimming) without supplemental oxygen; this is the basis of my lung regeneration effort; exercising both with and without supplemental oxygen thinking that my body is smart enough to regenerate my lungs when I do so well with supplemental oxygen but struggle with low sats without the extra oxygen.

I contacted the authors of the article and inquired about what the patient did (details) but they would not reveal it. that made me mad. I look at yoga as something that may get thestretch you are trying for on the tramp

thanks for your site; I check it when I can

gotta go for now but hope to hear how you are doing soon

ron Peterson [e-mail] regeneratinglungs.com

[dddine in reply to Parvati]

Great, this motivates me to hit the gym again.

[ronpeterson in reply to dddine]

dddine stay with it for the long term and do all you can to avoid infections you can expect to slowly regenerate I think ron

[Robert-g in reply to Parvati]

Hi I'm pleased to hear that there is light at the end of the tunnel. I was diagnosed with COPD and emphysema about 7 years ago after giving up smoking I then had a heart attack which I sure was down to te patches 3 months a to have started to fight back I gave up a massive drug habit of 45 years opiates are no longer apart of my life my mindset has become a positive one focused on wellness .In a matter of three months I have found that I can now run up the stairs, take the dog for a walk 3 times a day and use the resistance machines in the local park. I had a recent spiro test and I've gone from 55 to 75 percent and I have been been referred to the hospital for supervised circuit training an like you I hope to go swimming to further improve my general wellbeing .

Strangely enough I to had 85 in mind but when I get there I should imagine I will settle for 100

Keep up the writing your very good and you inspire.

[ronpeterson]

parvati I am most pleased to hear from you as you definitely seem to have an open mind about lung regeneration. this is most unusual. so many of us are closed minded about this subject. I was also glad to learn here of your blog and have found it I agree with you about too much writing as it takes away from our work to improve our lung situation. I will be traveling for 15 days but will be in touch upon my return. keep up your good work! ron Peterson [e-mail]

[Parvati]

Hi - I was interested to read of your positive result with anoro ellipta. I hope to try this for myself, mainly as I could then stop using Symbicort and so eliminate any steroid component of my medication. Are you certain that the improved lung function stats are due to the inhaler alone and not your exercise?

I have to ask you about your exercising without 02 - do you measure your sats when you do this and if so are you ensuring that they stay above 92%? I ask because I don't think it is a good idea to exercise with low sats - or even to have low sats at any time as this will be having a bad effect on your heart in particular and you may well induce pulmonary hypertension. When my sats drop with swimming it has been unavoidable rather than intentional - and as I only take 40 seconds to swim each length and start each length with sats above 92, I estimate that my sats are probably only dropping by the time I am halfway through each length. I am about to try swimming using only my upper body and holding a float between my thighs to keep my lower body raised in the water - hopefully this will prevent breathlesness as well as low sats. The idea was given to me by the Australian COPD athlete that I wrote about in my latest blog - you can see him swimming in this video (scroll to bottom of page).

copdathlete.com/photo-gallery/

[ronpeterson in reply to Parvati]

parvati I continue to have higher fev1 and fvc it is likely that it is from the new inhaler who really knows for sure? I got 67 days worth for free however, the pulmonologist's nurse told me to rinse well because it was a steroid? check it out online by goggling the inhaler name above it was just approved by the usa fda in dec of 2013 I talked to a woman once with copd who swan (BREAST STROKE) WITH OXYGEN with no problem just by keeping her nose above water and putting the oxygen tank in the middle of her travel on the side of the pool the tubing floated on the water not everybody agrees that low sats are harmful to the heart my cardiologist said don't go below 80% tom petty, the one who did the original research which brought oxygen to those with copd in the 60's said it didn't matter at all he is deceased now but was a friend of mine I am off tomorrow to get photopheresis treatment in st Louis, missouri (my lung transplant center) for more treatments to prevent donor lung rejection and will have fev1 and fvc tested for more accurate results ron

[Parvati]

Good luck for tomorrow. I have swam with 02 in a float on open water. At the council owned indoor pool I would only be allowed to swim with a 'carer' present during the once weekly 'disabled and special needs' session if they knew I was on oxygen. Incidentally when I swim I only bring my face up out of the water every second stroke to take an inbreath - this works great because I am exhaling longer than inhaling, with my face in the water against it's resistance.

I have read about Anora Ellipta - it states that it is a combined antcholingeric and beta agonist - no mention of any steroid component. I also googled 'photopheresis treatment' - I have never come across that one before so will be interested to hear how it went for you. I have fingers crossed that you have held onto your improved fev1 and fvc all the best to you , Vanessa.

[ronpeterson in reply to Parvati]

Vanessa have held onto the improved fev1 and fvc info soon on regeneratinglungs.com thanks for the info on the inhaler my lung transplant team told me the inhaler is really nothing new and if insurance will not pay (after my 127 day free samples run out), they will prescribe something just as good that will be paid by insurance I believe it is good for 24 hours and have not have that for years 67th photopheresis treatment to date 2 every 28 days it has stopped my donor lung rejection I believe hopefully long enough for us to learn how to in vivo direct stem cells to regenerate our native lungs just thought of something for you! I have never been able to float on salt water but always tried it with waves recently went to a salt water cove with no waves and was able to easily float with NO MUSCLE EXPENDITURE hopefully that will give you and the aussie some ideas? ron

[Parvati]

Hi Ron - Re floating - I find I can float easily - 'standing' bolt upright in water out of my depth (ie. my feet don't touch the bottom) with arms held out at the sides - I can do this without any need to tread water - just stay perfectly still and breathe for as long as I wish. Conversely when I try to swim underwater I find I can't, as the water pushes me back up before I can get below the surface properly. I believe this is all down to hyperinflation - my lungs act as an internal buoy!!

Great to hear that you have held onto your fev1 / fvc! Best wishes, Vanessa.

[ronpeterson in reply to Parvati]

Vanessa I am amazed at this! seems like a good opportunity for you to build up your arms in the water by using your arms to rotate your body first clockwise and then counterclockwise using only your arms to create the rotation on another front, I am keeping quiet on the new inhaler (anoro ellipta) because it costs $317 American per month and (i am still on free trial) my insurance (humana) will not cover the drug (my pulmonologist's nurse is currently trying to appeal their decision I can not afford to continue at that rate but my lung transplant team has something they feel will be just as good but a lot cheaper I continue to feel like I am getting stronger but my fev1 is not increasing it is now my opinion that your initial reaction to my efforts (fev1 is not accurate enough to detect lung regeneration) may be correct I am also slowing down my efforts on the treadmill (with supplemental oxygen) to see how I feel so far, I think better whats new with your efforts?

ron

[hollyjohn]

aged 62 diagnosed with asbestosis with pulmonary lining of approx. 10% would be out of breath after 40.meters walking 2 Labradors later walking around 2 miles per day have been discharged by my consultant as the pulmonary thickening has dispersed to unidentifiable on a scan. slow but steady prolonged exercise seems to have helped me immensely

[sl0J0n]

Hello, "ronpeterson";

I've checked the website you mentioned, couldn't find it.

I tried the @yahoo.com address, emails bounced back.

If you're still active here please reply.

I'm very interested in learning more about this.

Thank you in advance for your kind assistance.

Sincerely,

jon