Positivity

[docmel]

I try to remain positive but I have had such a rapid decline in ability to not become breathless. I used to be able to pace my walking to where the lowest my oxygen saturation would drop was 86% and I could manage without oxygen. Beginning of November I could walk 50 feet drop in oxygen saturation to the upper 80's I could recover relatively quickly without oxygen. Jump to today 50 feet drop in oxygen saturation to the mid 70's recovery without oxygen takes 5 to 10 minutes and with using the oxygen I still drop to upper 80's and lower 90's of course reocovery to 93% is quicker. So use the oxygen...now I'm attached to tubing. 😔 It makes life more difficult to navigate.

Billbob10 I've watched some videos on the Buteko Method and I'm going to purchase a book on it next payday. I'm not sure how much it will help and I do understand the theory behind it as breathing is driven by carbon dioxide levels in blood. Regulating breathing and not panicking or hyper ventilating is something I have done since my diagnosis in 2010. I need to read and practice this method to see just if it will help trust me I'm serious about it.

Back to the title recently after several months away I did post and perhaps it wasn't positive in nature but in the moment it was what was going on in my brain. I guess what I'm saying this site is more for info. With my decline being so rapid over the last 2 months I have fear so I guess I should go see a Psychiatrist.

I want to thank Rubyred777 for checking on me January 5th. I want to thank helen6 for reminding me positivity goes a long way. Thank billybob10 for the info I will definitely try to put it into action.

[Damon1864 Volunteer]

Being positive really helps, think of all the wonderful things in life. I used to get so down, but now I put a smile on my face and think life is good. Please take care. Love Bernyxx

[sassy59]

Bless you docmel and your positivity. Take care and embrace each new day. Thinking of you. Xxxx

[O2Trees]

Hi docmel, I couldn't remember which lung condition you have, then looked you up and found UIP which I gather from googling also means fibrosis. So Im not sure if this will apply to you but thought I should mention that Buteyko exercises can be very helpful for those with asthma but as they raise the CO2 levels in the blood they can be harmful to those with copd. And using oxygen can sometimes cause retention of CO2 in which case Buteyko isn't a good idea.

So since you mentioned using oxygen I wondered if this would apply to you even though you have fibrosis. If it's irrelevant then apologies. Of course breathing through the mouth where possible is always helpful and seems to reduce hyperventilation, so that part of it is good for everyone. All the best and stay positive

[knitter in reply to O2Trees]

Hi O 2 Trees.....just a point about breathing and the Buteyko....I agree it is not suitable for everyone, I went to a registered practioner , but now they are very very expensive.....so I was monitored.

I have asthma / COPD so I find the low and slow belly breathing with relaxed upper chest beneficial for me. But fibrosis is a different condition.

But the other exercises do raise the CO 2 levels very quickly for a short time so that is a contraindication for many people...so please contact your health professional first.

BUT ...you mention breathing through the MOUTH...that is not part of Buteyko.....they emphasis NOSE breathing only....MOUTH breathing can increase hyperventilation.....gentle nasal breathing, belly breathing ....

[docmel in reply to knitter]

I'm not sure where I mentioned mouth breathing but I'm aware of the method being a nasal breathing. Not sure it will do much for me as my issue is getting oxygen in as it is that side of the 2 way membrane that is damaged so I thought I'd read on it and talk to my specialist. Truthfully I am pretty sure I've hit that rapid decline in my respiratory health. Either way I have several family members who depend on me for I wear many hats so I battle on.

[O2Trees in reply to docmel]

No, it was me who said mouth in a moment of madness docmel. I did buteyko years ago so of course I know that. Heaven knows what gremlin got into my brain . . .

[CornishBrian in reply to docmel]

You will only hit the rapid decline if you ease up. Exercise is the key. Sometimes we rely too much on our little devices such as blood oxygen monitors. A lot of folk see breathlessness as the beginning of the end but it's not. It's a natural process to show we are exercising our lungs. How often did you measure your SATS before you we diagnosed? I suspect, the same as most others, never. Try finding someone your ageish and measure their SATS before and after exercise. Have you seen athletes, at the end of their events, drop to the floor gasping for air? What we have to do is a little more exercise and breathing control. BLF have some brilliant publications on breathing control and a quick phone call to them will tell you which methods are effective for your condition. Also, Respiratory Rehab.....that really shows your potential....even if exercise has never been your thing before.

[docmel in reply to CornishBrian]

Thank you Cornishbrian I suspect what you say has some valid truth to it. I live here in the the states and on a very limited budget. I suppose I could come up with my own resp rehab program as paying for it is far to spendy. Thank you .

[CornishBrian in reply to docmel]

I didn't realise that you were in America but fortunately for you, there is a huge amount of free help available on line. First thing you must do is take a bit of comfort from the fact that you have been diagnosed....might seem a bit weird but you have managed your condition up until the time you visited the doc. You were aware of your breathing problems etc but for a long time dismissed them. Now you've turned and faced them...brave move in itself. Ok BLF has loads of information on its web site...all for free plus...breathing contro and even chair based exercise is available free on You Tube. Steer clear of expensive " alternative medicines" and just save yer cash. A few little changes in approach and life style and you will live a long life. I was diagnosed 16 years ago and although I've had to give up a few things, I've just replaced them with things I've always wanted to do but never got around to...result....a full life.

[docmel in reply to CornishBrian]

Well I was diagnosed in August 2010 with usual interstitial pneumonia. Yes since I have managed relatively well my breathing. I haven't had this rapid of decline since July of 2008 which is when I began chasing the diagnosis and my first symptoms appeared. I'm married and I already was put on disability in 2011 due to the severity of my breathing issues. 2 years ago I was prescribed oxygen use with exertion really didn't use it that often until August of 2016 and then primarily when grocery shopping as I'm determined to be as active and productive for and within my family. This rapid decline over the last two months has me very discombobulated...

I can't find balance. I don't want to be a burden. My responsibilities include:

Walking my fur babies

Laundry

Grocery shopping

Cooking

Accounting

General house work

I cook like 3 to 4 days a week now, I stand a watch my dogs verses walking them, grocery shopping that is an all day affair if I'm alone. I'm falling further behind on house work. About the only thing I'm able to do with out challenge is the accounting and the crocheting I do. Oh I read and color. Some might say this is a charmed life but its not. At least not compared to what I used to do as a career. Really I thank you for all the advice...just feeling blue.

[CornishBrian in reply to docmel]

Being "down" is part of the condition, unfortunately. I think we all go through periods of negative growth. Settle back and look again at your life...any thing you could do differently or adapt. My mornings are the best time for me and so I plan around that. Showering was a real chore but now I lower the shower head so that the flow is lower powered, use a back scrubber and then drip dry for a few moments and instead of towelling dry, put on a terry dressing gown. Any exertion that makes you raise your arms will leave you short of breath and so before I dress, I spend a few minutes pursed lip breathing to boost my oxygen levels. This is also a good way to take the "panic" out of breathlessness. I do colouring too....try a bit of painting as well but I'm really no good at it...but still I try. Another challenge....

[mrsmummy in reply to CornishBrian]

Excellent response.

[docmel in reply to mrsmummy]

I don't know that people can fully understand where I am if they don't know where I'm from and what I used to do and who I was and how it defines me....I understand the reasoning behind the rules. Truly that is a part that will always be like being a parent.

[docmel in reply to CornishBrian]

I suppose it to be true being down is part of the chronic disease. I thank you and I'm going to ask my primary care doctor for some advice as well as my pulmonologist. Back to my crocheting and my fur babies.

[CornishBrian in reply to docmel]

Fine keep looking, reading and pushing the barriers back. Really enjoy the good days and accept the bad days. Keep in touch...

[O2Trees in reply to knitter]

Cripes!!! I meant nose of course knitter. Just as well you came in to put me right. Synaptic confusion - it can only get worse.

[knitter]

Hi docmel.....please do not try Buteyko without advice from a health professional.....it could be very harmful to you.

You have a different condition from mine.

You can help to calm yourself by trying to relax your body.....very difficult I know when you are struggling to breathe.

And I would tell your respiratory team about your anxiety so that they can help you.

[Lizzab in reply to knitter]

How will Buteyko harm and what is the evidence for this please?

[mrsmummy in reply to Lizzab]

Buteyko exercises can be very helpful for those with asthma but as they raise carbon dioxide levels in the blood they can be harmful to those with COPD, especially to anyone who is classed as a 'retainer'.

[Lizzab in reply to mrsmummy]

Thank you. The phrase CO2 retainer is new to me. Which at the moment means I have no understanding of the physiology involved. I will have to read up on this. My understanding of Buteyko is that it enables the release of oxygen. That's the purpose of Buteyko, to increase oxygen in the body. Without CO2 your blood can be rich in oxygen but not be able to be released and utilised....lots to learn, as always (for me I mean).

[Billiejean_2]

Hi Docmel, it must be so hard for you, seeing your sats drop and your breathing get more difficult. I can see how hard it must be for you to stay positive, so well done for trying. Just sending you good wishes and hoping things might get easier.

[Hidden]

G'day Docmel

Sorry you are in this position, we have just completed the cycle of IPF with my wife receiving new lungs in July 2016.

I hope my thoughts may help.

Breathing...The nose is a perfect filter, the mouth is not. Nasal breathing is by far the best method of inhaling air.

Sats drop. If you can keep a journal..record what you were doing at the time ..what the levels dropped to and the recovery time. Handy to show the Dr on your next visit.

Good days..Bad days. Yes everyone with this disease has these, and learning how to cope when the attacks occur will result in faster recovery times.

Trying something new (Medications, exercise)....Please do not do this until you first check with your Dr.

Normal duties.. This is the major concern... My wife refused to stop despite my constant nagging.....I had to get up early and do the housework before she woke, just so that she would stop. Each time you push the body you may be doing damage to your heart.

Susan's heart had doubled in size (on the right side) and it took months to bring it under control.

To maintain as healthy a life as possible the two things that ALL the medical staff push are

A healthy diet

Pulmonary exercise.

If you are already doing these suggestions Please ignore my ramblings.

This disease can be beaten.

Will (Australia)