Breathing get worse

Hello Friends... I have had COPD and Sarcoidosis for about 15 years and

I have seen the decline in my health. My walking has slowed way down due to be getting so winded. I get winded doing about anything now. I have alot of scar tissue in my lungs. Have asked the Doctor about a lung transplant but he says NO. He is against alot of things, like essential Oils, Humidifers ect. Tyring to find a way to breath better, any ideas out there--have used the essentials and it works a little. Breath Good and God Bless

31 Replies

  • This is one thing you could try. A lot of posters at Earth Clinic report success with it. Linking to my post here:

  • I will look at the site Altamisal

  • Hello bruce. Sorry to hear of your condition. First off I would pray and secondly, your dr should have you referred to a physyotherapist. My dad got given a few excersises at home to help, which they did for a while. Its is of uttermost importance that you stay away from anybody who has a cold or any viral infection. This can have a bad effect on people with COPD. My true advice would be, please please consider asking Jesus into your life before its too late. I may not know you but Jesus does and he is knocking at your door. Take care.

  • I do believe but i hope that day Jesus is wanting me is a long a very long road.

    i do stay away from people that are sick and have viral infections. i think the

    only possible thing i can do is try to convince my doctor on referring me to

    have a lung transplant. my quality of life is not all that good now.

  • I really do feel for you bruce. After seeing my dad go thru the same thing. I do not know you but I wish I could help you. Every life is precious. If your doc doesnt recommend a lung transplant then maybe another doctor would. One thing ive learnd is doctors are not of one mind so just keep trying different doctors. I pray that our lord Jesus watches over you and protects you. Im here Bruce and I will always reply to you as soon as possible dear brother. Take care

  • i have had alot of problems with obtaining a portable O2 machine and a company i ordered from stuck me with a bad machine and will not help me and i explained to them that i needed the machine to go mobile and get rid of tanks and so far but they did not care.

    so i am having problems breathing and obtaining a portable machine.

    Maybe someone knows of a organization that helps people out wit things like this... Have allready checked with ins companies and no dice right now.....

  • Hello again Bruce dear friend. Are you in the UK or USA? My dad got little portable 4hour tanks. Unfortunately he didn't get a chance to use them

  • i am in the usa

  • Oh i see. I understand that the health service charge over there? Its free here in uk. I must admit im shocked at some of the attitudes of the medical staff over here. Seems like you have the same problem over there? These people have no consideration or empathy for people. It really makes me mad. You shouldnt be treated like this. The only advice I can give you friend is to keep on and on at them until somebody actualy takes notice.

  • actually i have given up on getting a portable machine i have been trying for at least 5 yrs

  • I had the same problem w/ a company out of florida where I purchassed a responics evergo for over five grand. they said there was a warrenty and i could try it for ten days. The alarm went off every time i used it. the jerked me around from dept to dept until the warrenty expired. Then charged me over six hundred dollars restock fee. I made a complaint to the BBBB better business bureau and they said it was a case of buyer beware and was of no help what so ever. I would try writing to some news shows or editioral pages that can possibly expose these shoddy business practices, perhaps the president of the compnay. What i suggest for others is to RENT your portable oxygen unit until you find the one that best suits you. I finally just opted for compressed air cannisters which i wear as a backpack. Medicare pays for mine and I dont have to deal w/ batteries and such. Pain in the rear having to keep so many on hand but at least i'm amblitory and breathing.. good luck to you and may those people that are messing w/ those of us in this conditon get EXACTLY what they have coming to them. Peace Out

  • the companys name would not be 1st class medical????

  • that sounds about right but w/ this oxygen depravation my memory is not what it used to be. I had a different computer then so I can't say for sure. do you recall the name of the town, maybe that would jog my memory. I just know I could have sent it back in time but they kept telling me to wait, it will adjust to your breathing. bull was returned only 1 day late and cost me over six hundred bucks for a piece of crap and i'm still fuming. I had to pay as it was before i got medicare. should have sued them but i don't have the energy it would take or the breath to talk it out. The dogs count on I said I beleive in Karma and they weill get back what they put out....keep on keeping sir...hope you have found a solution

  • I beleive the state was Florida, not sure about the town the city was Englewood thats where i would call and order and such

  • Hi prepper i had a dr appointment today and we talked about

    a transplant and he explained that he did not think i would survive

    the surgery and another reason is a person goes thru the eval for a transplant and there is alot of things a person goes thru, and then

    they get placed on a waiitng list and no promise of lungs .

    so i think i will try to enjoy my life and be with my family and grandkids.

    God Bless everyone out there

  • God bless you bruce dear brother. Your a BRAVE BRAVE man. My dad was too old to get lung transplant. He spent 3 weeks in hospital before christmas and he had enough. He asked to come home knowing he would only have a few days, he too was a brave man like you so enjoy every day with your family my dear brother. We will all be in heaven soon with our knew bodies and then you will have new imortal lungs. I really do admire your courage. Keep strong.

  • Thank you prepper i do not feel brave, actually i feel like my life was taken from me by this COPD, cannot do mucg at all but i sure try--i tell my wife Cindy, "you have to let me try to do things for myself" she is such a good wife and great caregiver, if there were more people on the world like her we would be in such great shape..... my wife devotes alot of time to me and does not go out much and i feel so bad for her... she doe snot drive either...This COPD is winning and it knows it. i just wish there was a way to KO this Desease... God Bless

  • Ok bruce. My dad was in tears at times cause he felt useless but I reassured him by saying "dad, we all love you and we are just happy that you are still here. You have had a full life of looking after us, now its time for you to be looked after. we would do anything for you. After saying this to my dad felt alot better. Now bruce, you are not useless ok? Like you said you have a wonderful wife and although I do not know her I believe she is furfilling her wedding vows to you, "through sickness and in health" you are human like my dad and of course you are going to feel like this but this wont be forever dear friend ok. God has promised us many things. Your wife is right were she wants to be, with her Loving husband. You may feel like the COPD is winning but Jesus has already won. Just enjoy every second with your wife no matter how limited you are physicaly and rebuke any bad thoughts in Jesus name. We are all here for you and if I could give you a brotherly hug...I would.

  • thank you prepper i do not want to seem like a cry baby, i am not one, just know we all have a short time on this earth and some have shorter.

    yes my wife is loving to me , i feel so sorry for her, she has type 2 diabetis and just now is getting her levels under control, they were in the 400 and 500's now in the 100 and 200's she is great.... she has also tried to help me find a portable O2 machine but we are both unable to purchase one and ins will not pay not sur ewhat to do and she is really worried about it.

    she cannot handle lifting the tanks much longer

  • Crying helps if you can, its a sign of strength my friend but I dont think your a cry baby. Nobody at your local church would turn down a chance to help you bruce. Not if they are born again christians. Maybe telling your local pastor will give God a chance to help you and your wife. You will be amazed. Trust in Jesus.

  • Hey Bruce. Don't allow copd to win. I heard something that I agree with: I have copd, but copd doesn't have me. Sounds like God has blessed you with a wonderful wife. He has more wonderful things awaiting you too. Keep the faith. Take one day at a time. I'll be praying for you.

  • I would suggest for you to try a new doctor try going to another hospital and tell him you're probably maybe they can help you better I had similarproblem I tell my doctor to give me his oxygen flow when I go outside because I get tired too quick and he has refuse to do so so I've been thinking I'm going to another hospital this way they can give me a new doctor maybe they are more advanced than these doctors are where I'm going right now. Hope you get better or you condition changes I don't know what else to say so goodbye for now take care yourself and God bless you friend

  • Rabbit1983 thank you for replying, i live way up north and we have a small regional hospital here and if we have to have major operations or bad trauma they have to fly us to Fargo ND . we live in Bemidji minn

    There is only one doctor here that deals with lungs, the other doctors will treat me but their knowledge about the lungs is not like my doctor.

    I have spinal stenosis as well and the doc here wanted to send me to

    Fargo for surgery but the surgeon there said no to the surgery due to it being to risky on my part.

    while i am on here i am asking anyone that knows of an organization that helps people obtain medical equipment, i am in need of a portable oxygen machine but my ins company will not pay for it. please if anyone knows le tme know thank you and God Bless

  • I'm afraid that your doctor is right. I looked into essential oils, bought them and all they did was make my breathing worse. The same with a humidifier. Humidified air is heavy and dense which makes it hard to breath. You have to stay away from anything that will irritate your lungs, such as perfume, deodoizers, cologne, scented candles, bleach, even scented clothes detergent that make your clothes smell nice will irritate your lungs. I'm afraid there is no miracle cure.

  • I do wish so bad that there was a miracle cure but to be realistic like

    you said there is none and we have to go by what the doctors say and

    hope they are doing all they can.. so far i am having thoughts of me

    possibly burdening my wife and son. my daughters do not live with

    us, son does and he helps also with anything he can. God Bless

  • Bruce, I can understand your worries about being a burden to your family. I think the same thing at times, but then remember that God is in control of my life. He loves us all & wants us to believe in Him & trust Him with every part of our lives.. He is able & with God all things are possible. I'll be praying for you.

  • Hello Bruce. This is my first reply. I'm rather new to the group. The fact that we both have had COPD 15 years caught my attention.

    The past year my health seems to be crashing. I also live with chronic pain; a condition called CRPS > CHRONIC REGIONAL PAIN SYNDROME.AKA RSD> reflex sympathetic dystrophy. The maintenance symptom being 24/7 pain.

    I've seen threepulmonologist in 15 yrs. None have offered more than the previous. At least my current Dr takes the time to answer my questions. He will call in meds without me going in for an office visit. Not sure if that demonstrates his faith in me knowing my body/What it need, or laziness on his part.

    I'm also looking for ways to combat the SOB ( shortnessof breath) while walking through the house. Sounds like a simple enough request.

  • After reading your reply, I'm so much more appreciative of this site & grateful for all those who share their concerns & experiences with me & others. I pray for each one of you. God knows our needs & I believe this is just one way that He provides for us.

  • I'm on my way into my 11th year of this hell we call copd. I have been in pulmonary rehab for over 5 years . In all that time I have taken many classes. I started out very severe and was told I did not have long to live. The best exercise according to all resptitory therapist is walking. A treadmill in you home is best so you don't have to go out into the general public and expose yourself to unthinking people who go out sick or to the smoking & perfumed public. I just found a DR Noah Greenspan on utube who has wonderful ideas.........i would highly recommedn you watching his videos..........and if you can only walk 2 minutes then do two minutes because tomorrow you can do three, etc. you body will do what is expected of it. I have to turn my oxygen up to 5 lpm whhile walking so i don't get hypoxic. your sister in copd peace out.

  • I know we would all like to think that a lung transplant can fix our copd. It is my undersatnding that we are not well enough to withstand the operation. At least thats

    what my doctor told me. the best thing to do is eat nuturious, exercise by walking, mainatina a positive attitude, take your meds and oxygen faithfully and keep on keeping on. There are people out there praying for you. good luck

  • I am not real sure about lung transplants, i know there are alot of eval things

    a person has to go thru, also the surgery you go thru is no guarnetee a person

    will make it thru it, and if they do make it thru the surgery there are so many meds they put you on for alot of reasons and i feel it is just to risky for me after my wife and i talked about it. I want to spend as much time with my wife and kids and grandkids ( 9) of them and i want to see a few of them graduate from HS.

    Life is so precious and we ar ehere for a short time and we all have to make the best of it and i know we can.

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