Thanks Linda and Sue!: I have joined... - Lung Conditions C...

Lung Conditions Community Forum

55,179 members65,963 posts

Thanks Linda and Sue!

Moya-Bean profile image
33 Replies

I have joined you guys for your help. I have a best friend who has COPD, has just been released from St Marys today. We go out to lunch together and although I am an ex-nurse I worked in Coma (so I can resess) but I need to know the in's and outs of this and what is important for me to learn incase something happens when we are together. I alsohave a father in the states who I have just learned was diagnosed 4 years ago with COPD. He won't get the care we do at present as he has no health insurance and cant afford to see the doctor or even pay for antibiotics. He will die. I have a 28 year old sister who needs information on how to help him also, so if you all can help me, I might be able to help her..... Just to let you know my dad is 83 and refuses to give up fags and beer and doesn't walk or exercise much. He figures if there is nothing he can do now and he is tired, I bellive he has given up. But my freind hasn't and on the day the David Bowie past away, he came out of hospital saying he was going to do everything he can to stay out of that place!

My friend do does all he can to keep living and loving life. I thank you all in advance for any help you can give me. kindest regards, Fran

Written by
Moya-Bean profile image
Moya-Bean
To view profiles and participate in discussions please or .
Read more about...
33 Replies

Hi so sorry to hear about your dad. If you get in touch with the BLF helpline or web site they will be able to give you all the information you need. COPD comes in different stages but it is not a death sentence if you get the right treatment and live heathery and stop smoking you can have a good life. I was diagnosed in 2006 and I have severe COPD and I am 57 years old take care

Moya-Bean profile image
Moya-Bean in reply to

Thanks Amanda, I have contacted them and they have been great. But and have told me all the "proper" things to do if my friend has an issue. But when I said, the last time we had lunch we walked out to the carpark and he was hit by wind that came up from a valley. He was unable to breath, other then knocking him over and covering him (which I dont want to do to a 65 year old person) what can I do? They had no answer. I have decided to put one of my fume masks in the car with us as it will lessen the effect if anything.

But what I would love is if you could share issues that come up randomly that others didn't quite know how to deal with and what would have been the best course of action for YOU.

My friend will not give up and we go out (both of us disabled) to remind ourselves that we do have a life and it is worth living!

I refused to leave him standing paralized in a carpark. I will do anything and everything I can for him as he does for me and my disabilities..... the differance is, I tell him what he needs to do and where my meds are and show him the emergancy number to call on a card my assistance dog carries. But he won't tell me how to help, he is a proud man and a wee bit stuborn. This is why I have turned to you all, you live it every day.

Much love and thanks, Fran

in reply to Moya-Bean

That best thing you can do is to make sure he has a reliever inhaler with him all the time that is usually a blue inhaler so if he feels breathless he can take it you can also buy a COPD alert band from BLF I have one to ware when I go out hope this helps

Moya-Bean profile image
Moya-Bean in reply to

HI Amanda,

I always make sure he has that with him. I have told him I refuse to go out without it. He is very well medicated and now has stats tecno stuff which is linked to the hospital.

It does take him an hour to medicate in the morning and if he rushes it then we have the odd breathing issue, until it settles down. but so far, we haven't missed a lunch, except this weekend when he was taken to recess, he's home now. :) thank you, Fran

in reply to Moya-Bean

Hi fran glad to know he has everything under control. Just ask if you need anymore help take care. Amanda xx

Debbielong profile image
Debbielong in reply to Moya-Bean

He can take a scarf or hankerchief with him when he goes out. Wind, cold,heavy smells, cleaners perfume, car exhaust, dust all can trigger respiratory issues. If he has it with him he can cover his nose and mouth. I find it useful. Just an idea.

Moya-Bean profile image
Moya-Bean in reply to Debbielong

Thank You for such a common sence idea! I will make sre we both carry them! You have really helped with something that maybe sounded a bit bizzar, but now I know also that other things can trigger that as well. I can keep us a bit more safe on or lunch outings x

peege profile image
peege in reply to Moya-Bean

There is an item of clothing called a 'Buff' . They come in all kinds of patterns & all sizes.

They're fantastic. Look then up on Amazon or Google.

They are treated so that moisture from breathing is wicked off so stays dry.

Personally I prefer plain and the fine wool. I've a navy one & dark red. I get a child's size as I've a small head! £12, worth every penny.

At the moment I wear one around my neck all the time as I'm in & out a lot so just pull it up over my nose & mouth before being hit by cold air.

I've asthma, changes in temperature, wind etc close my airways & I immediately start coughing. Then coughing closes the airways even more. Vicious circle.

It's important to Keep the airways open as you know already.

I'd buy him a Buff ASAP - I promises I don't gave shares in them! I had similar when I rode a motorbike, they can pull up over your head for warmth too.

The plasterer was even wearing one on his head the other day to keep his unruly hair under control.

I bet there are loads of members who wish we had a friend like you Fran. Friends and family usually don't have a clue.

All the best. Peege

ps perhaps your friend could get on the pulmonary rehab course (PR for short), it's brilliant for building stamina & lung strength.

O2Trees put up a post about her own PR daily exercises. Just put the name in the search bar and scroll down her posts. There are CDs & clips on YouTube too. I'm sure BLF have a cd to purchase. P

Moya-Bean profile image
Moya-Bean in reply to peege

Cheers for that Buff it is and amazon here I come! My friend goes to the Hosp Physo every week where he and others with COPD have an intensive 1 hour work out. It takes him 2 days to recover. But he is much stronger when he is back up on his feet. Without it he struggles to walk any distance... but he wont let that stop him taking me to lunch, even if it takes 20 min from carpark to front door of pub..... I have a feeling it's so he can have a half of real ale more then anything! But never again do I want to witness what happened last time, especially if it is avoidable. I will by 2 so that I always carry one also and if they are that cool, I'll get one for my assistance dog too! Your all brillant, thank you,

fran

Jessy11 profile image
Jessy11

Hello Fran & welcome to our group.

I'm very sorry to hear your Dad seems to have given up, but he could live for years yet. He really needs to stop smoking. It's the absolute best thing he could do.

I understand he's in America so don't know how their welfare system works. Does he not have state welfare at all if he can't afford the meds? Seems very unfair he can't access the help he needs.

Your friend needs to stop smoking as well if he/she still does. Eat healthily,exercise, take prescribed meds & live as normal a life as is usual.

If you need, advice give the BLF a call in the morning. They may even be able to help you with advice for USA.

Take care, keep well & let us know how you get on 🌺

Moya-Bean profile image
Moya-Bean in reply to Jessy11

Hi Jessy,

My Father is now aprox 85 pounds in weight. My sister and I found out this chiritmas, and he was diagnosed 4 years ago. We found out when he asked my sister permission to die and she refused him. She is the same age as my daughter. She phoned me to tell me.

My friend is amazing, he eats well, he is at the hospital Gym and sometimes I thinnk he does far to much. This last hosp. stay I think scared him a bit. He has just retired and he has decided to delegate all his responcibilities now and consentrate onhis health. Oh, he doesn't smoke, although he use to but quit soon after being diagnosed. He does everything he should.

But he is proud and for the last year we have gone out to lunch to remind us both that life is wonderful and so worth living. I am disabled and I have told him everything he would need to do for me if anything happened. My assistance dog carries my meds and a USB with my medical recourds she also has her own mobile with emergancy numbers to ring.

So he know it all.

But he is proud and although I am a retired nurse COPD (Emphazeima) was nnot my area. Other then being able to resess him I have no idea what his meds are or what I could do in cituations like what happened when we last went out and he got caught by wind and was unable to breath.

I have contacted the BLF and they are fantastic,but as a x-nurse I learn better from those who live it. So, now and then is it ok if I come and ask questions? You all seem reall good people.

Many Thanks, Fran

Jessy11 profile image
Jessy11 in reply to Moya-Bean

Absolutely Fran! We will help all we can & there's many friends on here who will be able to help you.

Your friend sounds as if he's coping well & taking his meds.

He's lucky to have you

Take care & both keep well🌸

Debbielong profile image
Debbielong in reply to Moya-Bean

There is a surgery called lung volume reduction. Might b worth looking into.

Moya-Bean profile image
Moya-Bean in reply to Debbielong

My friend looked into that and the valuve (sp) one also. My father can't have any surgery as he owns no property to put up as collateral or sell to pay off the hospital bills and something like that in the states would be in the 100 rds of thousands. Neith my sister or I have money or property. If he was unable to pay the bill post op they come after us.

Hence why we have to fight to keep the NHS.

How many thousands of people here cound not afford insurance (all of us on disability). It scares me.

Unfortunatly my friend's lungs are to far gone and all they could offer is a lung transplant (which he won't do) and my Dad well he has given up.... Unless through all the wonderful help I have recived from you all, I can somhow get him to think again.

thank you, keep sugesting, things! Your wonderful!

Moya-Bean profile image
Moya-Bean in reply to Jessy11

Hi Jessy, Life in the states is not like here. Here we have the NHS (for how long is anyones guess). But there is no state help. He hardly has enough with his 2 private pensions to pay for a trailer in a trailer park (that is rat infested) and buy food. My sister has just paid $100 to the doctor so my father could go back and see him if he needs him. He is in California and she is in Arizonia.

When I lived there age 19 I found a war vet dying in the laundrett. I took him to the hospital and because he was a Hobo, by the time I had driven around the corner the hospital had thrown him out back on the street.

It breaks my heart that my dad will be treated like that, He was in the Korean War, he has a teaching degree, he has a bacholars degree in Bioligy, and a Masters in art. He was a 1950 abstract expressionalist in New York City and a Master Builder in Beverly Hills.

Now he has COPD, I can't help him due to my disablilties and the country he lives in has no NHS.... we must remember to fight for our NHS. Last time I was in the states I got ill, my Mom paid $150 for me to see a doctor for 10 min for strep throat and $100 for a weeks worth of penicillan. Can you imagine if what I have just told you about my dad happend to us here. The thought alone scares me and I worry for him and my sister.

Thank you all for being there for me and us and eachother x

Fran

Debbielong profile image
Debbielong in reply to Moya-Bean

If he was in the korean war does he should have va benefits? That should pay 100%

Debbielong profile image
Debbielong in reply to Debbielong

I am in the states.

Moya-Bean profile image
Moya-Bean in reply to Debbielong

He does, and my cousin was in Nam and my cousin gets everything done at the V.A. near him. My Dad refuses to go to the V.A. in L.A. (a man wholives in a trailer with rats eattin his food). But the only reason is his fear of anisthetic. At 83 he still belives he will die when under. He has had an groin hernia since 2012 and wont go.

The thing is my cousin who is like a son to him may be able to help us. I know he doesn't know about the COPD. And my Jer Jer who spent all my childhood carring me on his shoulders every summer, will probably be the only person who I could call on! I need to call him and first tell him what is happening and then see if he would take him to HIS V.A. Hospital.

Debbie, you are right, why should I let him just give up.My sister may seem grown up and is getting her doctoret but Dad is all she has as her mom went to Mexico and is NUTTS!

I am so glad to have someone from the states contact me. People don't understand, what happens to the old man who has no insurance and cant afford to see the doctor, much less go to hospital. The NHS here could very soon end up gone if T Tip is signed (for all I know it has been, as I am off the grid except private emails and now this. No land line, no mobile, no t.v. I have seen to much hate and needed to get better as I had been bedbound for 3 years due to be poisioned by a drug I was given for Neropathic pain. I needed to get strong enough to walk and finish training my assistance dog. (Service Dog) Thank you for jogging my memorie (side effect: severe short term memory loss). You are all brillant and I am taking notes so I can call my dad and sister and now my cousin. My only fear is he has given up and wants to die. But if thats the case he can pop over to the next state and have an assisted death so my sister doesn't have to go to hell and back watching him slowly die. The worst thing Is I can't fly anymore, or I would be out their and make him go to the VA but my cousin and my sister are strong people. I would just get ill... and I have no insurance :)

Thank you so much, looks like I'm gonna be busy this weekend! x Fran

Debbielong profile image
Debbielong in reply to Moya-Bean

I do understand about elderly people. Thet can b set in their ways. Good luck my friend. And besides they wont do anything medically to him without his consent.

Moya-Bean profile image
Moya-Bean in reply to Debbielong

Debbie, what State are you in? My Mom is in Mich, My Dad in Topanga Calif, My sister in Tuson AZ and I am in the U.K. On the Isle of Wight. (Hope you don't mind me asking). I was born In NYC and spent my childhood in NYC and New York State then moved to Topanga, met an Englishman and fell in love..... Rest is history :)

Thanks again x fran

Debbielong profile image
Debbielong in reply to Moya-Bean

Indiana

Swerv profile image
Swerv

Hi, welcome to the site.

Go to " treating copd with cannabis oil" on face book. Join, read the pinned post carefully and make a decision, meds or oil.

10 months ago i was diagnosed with stage 2 copd, stats in the high 80's, FEV of 69% and could not walk to my car without being breathless. early December i started taking cannabis oil and had a lung function follow up on xmas day. I was not expecting much. My pulmonologist was amazed. My FEV had increased to 84% and my stats were 98%. He did not believe the results and has booked me in for a retest next month, but suggested i try not taking any medication. I had stopped the day before the test and have not taken anything since.

Until my next test he has reclassed me as very mild copd and has cancelled a CT scan i was due to have in March to check my emphysema.

I had a biopsy last week, no problems, but as normal BP and oxygen stats taken every time i go to the hospital. My BP had dropped from 154 to 125 and my stats were still at 98%.

I can now ride my bike for 25-30 minutes with very little breathlessness.

I have done mountains of research on cannabis oil and it is treating everything from cancer, epilepsy, autism, alzheimers etc. It is not a cure for copd, if you take the oil route it is for life, the lungs are damaged and at the moment cannot be repaired, but cannabis oil will change his life. It has changed mine and thousands of others.

Merv

Moya-Bean profile image
Moya-Bean in reply to Swerv

Merv,

I will call my Dad tomorrow! My Dad smokes Cannabis (he lives in California !) I know he will be able to get ahold of the oil and I may be able to get him to stop smoking as a trade off! He only has one roll up a day and only a few puffs and then puts it out. Same with the cannabis. and he has one beer also. He doesn't eat much he is aprox 85 lbs and 4'11" now. All he does is sit in a chair and read. My father is an abstract expresionist for the 1950-60 and also a genius and retired as a master builder. He still sounds good on the phone, no rattle like his father who died of aspestoses. But if we can get him moving, he just may see my sister graduate Uni with a Doctoret!!!

Thank you so much Merv, I belive in real medician I make celtic, anglo saxon and old english medician, so this my friend is right up my families street! Your an Angel!

Swerv profile image
Swerv in reply to Moya-Bean

If he lives in california there are companies that will supply the oil there with proof of residence, just google. He can also get medicinal oil as it is legalised there. But he needs an oil with high THC levels taken as a suppository, so no high and has 70% bioavailability as opposed to 20% if taken orally, Smoking it will do nothing and if he stops smoking this will slow the progression immediately.

BUT, he must change his diet to one high in fruits and vegetables. he needs plenty of vitamins and minerals. Every day i juice a lime/lemon, slice of ginger, celery, kale, carrots, apples and oranges. I then add this juice to a blender and add blackberries, blueberries, raspberries and a chunk of pineapple. I add honey to taste. One glass in the morning with centrum multi vitamins. A glass for lunch and another glass mid afternoon.

This will give him all the vitamins and nutrients he needs on a daily basis. Because of this, his appetite will improve.

No salt, no sugar and limited fried food. If frying use rice bran or coconut oil.

I grill my meats which is mainly chicken. I also make a lot of home made soups with lentils and split peas.

Grilled chicken with a salad and a baked potato is a regular meal in my house.

Also try to get him to take Turmeric, made in a paste and added to his smoothie. turmericlife.com.au/turmeri...

India has one of the lowest rates of cancer as most indians eat Turmeric on a daily basis. It is a wonder herb. Everyone should take it on a daily basis.

Merv

Moya-Bean profile image
Moya-Bean in reply to Swerv

I have copied and pasted all of that, I will ring him and discuss it with him as soon as possible. You have been such a help. I shall also tell my sister to mobilise the troops (friends who bring him food) to bring the right things and to buy him a smoothie maker.... if not I shall send one to him from Amazon!

You are amazing and I will never forget what you have done. My sister just may have my Dad at her Graduation for her Doctoret yet!

Neither of us will give him permission to die, silly ol fool!

Thank you, night,

Fran

Swerv profile image
Swerv

Hi Fran

One important factor i left out is exercise. He needs to strengthen his lungs. If you go to youtube and search pulmonary exercises, you will find exercises which he can do sitting in his chair. This is a good one:

youtube.com/watch?v=nwxy9FL...

There are many, many more.

He needs to build up to the stage where he can exercise for 30 minutes a day...even just walking.

Merv

Paul-7182 profile image
Paul-7182

Hi Fran,

I lost my dad yesterday to COPD (respiratory failure), which he had battled on with for many years. That's why I'm on here right now. He had recently been taking regular flare ups, had multiple ambulance call outs, doctor visits etc.

I can't speak for anyone else, but I certainly observed a noticeable decline in his health over the past year. He was becoming more and more out of breath and got to the point where he was unable to walk from his front door to the garden gate, which is only a few feet away. Last week when he did, it resulted in an ambulance call out.

I say this not to disrespect my dad but to inform others who may know little about it and what it's like to witness COPD at its worse.. There were instances during breathing attacks where I witnessed him urinating himself, soiling himself, and literally begging for help because he thought he was going to die. That's the harsh reality of it...

My dad smoked 40 a day at one point, and toward the end, regretted every cigarette that he took. It robbed him (and us) of the everyday things most of us take for granted, like shopping, taking the kids out for the day, cutting the grass, washing the car, hoovering the carpet, basically anything that involved any kind of nominal effort.... It slowly took his independence.

I hope your dad and your friend gets the help they WILL need. This disease is a sentence for everyone involved. There's nothing more heartbreaking than watching your dad, in front of paramedics, beg you to save him. They say that in your parents eyes you're always their children no matter how old you get. Well in mine he was always my dad. He never stopped paying for things in shops etc, and no matter how much I protested, he would have none of it.

Today I feel broken.

Shocked1 profile image
Shocked1 in reply to Paul-7182

I'm so sorry to hear about your dad.

May he now rest in peace.

Condolences to you and your family. X

Paul-7182 profile image
Paul-7182 in reply to Shocked1

Thank you for your kind words, they're very much appreciated. x

Moya-Bean profile image
Moya-Bean in reply to Paul-7182

Bless you Paul for sharing that with me/ us. I guess we are here for a simular reason. My heart and love goes out to you in the early hours of this moring. And I thank you for every word you wrote. My father needs to hear them also and I promise in the memory of your father I will make sure he does, because I don't think he realises what he will do to my 28 year old sister. She is the only one left in the states who can care for him.

Your words brought me to tears, and other then I am so sorry you have lost your Dad and send my condolences to you and my thanks. I will be phoning my father this weekend and when I do I shall have you in my heart and mind.

Much Love and thanks for your brave words to me,

Kindest Regards,

Fran

Paul-7182 profile image
Paul-7182 in reply to Moya-Bean

Hi Fran,

I read what I wrote earlier and didn't mean to scare anyone. I need to point out that my dad was at stage four of COPD and had only 25% lung capacity. I know some people can live relatively comfortable lives with COPD who may not be at that far advanaced, yet!

I remember my dad saying many years ago, 'we've all got to go sometime.'

I can assure you and your dad that this was one of the most heartbreaking and most difficult things to observe. It happens slowly over a sustained period of time and you never really know when a breathing attack is coming, or if they're even going to survive it. If I'm honest in my assessment I think it's as bad as cancer, and in some ways even worse.

I got to the point where I found it difficult to even answer the phone when I knew it was him calling. It would get me so worked up that I'd have to ignore him, give myself a minute to prepare, then call back. I tried to emotionally detach from him to avoid the pain of seeing him that way. I tried to find ways to hate him. In the end it just hurt me instead. Because now I regret every horrible word I said to him. I used to get angry at him for even leaving the house for some shopping where I was more than willing to get it myself rather than deal with paramedics because he couldn't make it back to the car.

I truly hope your dad listens to you and your sister and gives up smoking. I sincerely hope he does. I absolutely feel for you both having to deal with it.

Take care. x

Snodgrass profile image
Snodgrass

No words can help but know we care.

What is this resess you speak of? Do you mean resuscitate? Your friend with COPD is very unlikely to ever need resuscitation as a result of having COPD so don't worry. He needs to learn pursed lip breathing so he can regulate his breathing when panic strikes and it will when he's short of breath. I have severe COPD and pursed lip breathing is a way of life for me.

I'm sorry to hear both your friend and your father have COPD = Emphysema.

There is a wealth of information available on the about COPD, more than we could ever explain on here. Maybe Google it and read some of the links. You will learn that most of us with COPD don't die of it, we die with it...when our time comes.

You may also like...

Thank You

background in the hope that I could help someone, as so many of you have helped us both over the...

Just to say thank you everyone.

my niece. We can always rely on each when we need to and for that I am grateful. You all have a...

Thanks

moring all you lovely people out I would just like to what a supportive environment you have...

Thanks

Thanks to all who replied to my post l am having trouble with computer and land line phone also...

Big thank you (bottle update)

so many of you reply and in many cases go completely out of your way in an effort to help my sorry...