Husband with COPD: I am new here and searching... - COPD Friends

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Husband with COPD

MAB5 profile image
MAB5
30 Replies

I am new here and searching for help and support for my husband who has Copd. He is 65 years old, a heavy smoker, a Vietnam war veteran. He can't breathe much at all, his levels are in low 90's but just can't get the air out. He can't sleep, has trouble with his cpap machine, just miserable. Just finished 3 rounds of antibiotics and steroids. Has a nebulizer, rescue inhaler, and Spiriva. His VA doctor was not much help at all, finally got him oxogen for night time use only. He now has a pulmonary DR using his insurance and hoping he helps. He has given him the antibiotics and steroids. And having him will prevent us from going 100 miles to the nearest VA hospital. I am curious about NAC and the Acapella Flutter valve. If any of you have anything on it let me know. We tried the Hydrogen Peroxide therapy but it seemed to hurt him. Running out of options.

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MAB5
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30 Replies

Hi I am sorry to hear all this. He might have air trapping which is common in lung disease. If air is trapped in his lungs then he would be unable to take a deep breath.

Has he tried any breathing exercises? Have a look online for them as they might help release at least some of the trapped air. He needs to ask his doctor/consultant if it is air trapping. x

MAB5 profile image
MAB5 in reply to

Thank you, I will tell him to ask his Dr, his next visit is soon at the VA Dr. They told him he inhales okay but not exhale. I will do some research online for exercises to see what may help. I appreciate your input, I am at a loss on what to do to help and he appears to have given up. He watched his father die from this so it is not good.

in reply to MAB5

Hi one exercise I have found to be good is to take as deep a breath as possible, hold it for 4 seconds, then breathe out for as long as possible even if he makes funny noises! This might help release some of the air inside.

Obviously both of you know he has to stop smoking as there is a huge risk of accelerating the disease. I don't know how to motivate him if he has given up though. I presume you have done the best you can. Remind him that he is not his father and treatments these days are much more advanced. Most people with copd die WITH it and not from it. Maybe some antidepressants would help him? Depression is very common inlong term illness.

I hope you find some answers. Take care. xx

MAB5 profile image
MAB5 in reply to

I have researched the exercises and explained to him that he needs to do everything he can to help himself feel better. That includes the exercises and stop smoking. His VA Dr has given him anti depressants but he won't take them. I am at my wits end with him. Stubborn does not begin to describe this man. Thank you for your help, it is much appreciated.

in reply to MAB5

All you can do is remind him that you and the rest of his family would really miss him. I presume you have told him he is not being fair to you etc? Very difficult but I hope you find some answers. xx

valeriejean profile image
valeriejean in reply to MAB5

he does not have to follow his fathers path. he can get better if he wants to. PURSE LIP BREATHING. In through the nose , hold it for a few seconds, the blow out SLOWLY from the belly until there is nothing left to exale. Do it again. do it all day long when short of breath. Eventually it will become second nature. Purchase a pulse oximeter at any pharmacy to check the oxygen saturation level. If under 90%, he's going to need oxygen. He will find by doing the purse lip breathing he can get his oxygen level up. breathe on!

Comeraghs profile image
Comeraghs in reply to valeriejean

Thank yoi am on oxygen 24/7 your post gives me hope if I purse lip more. Thanks again

MAB5 profile image
MAB5 in reply to valeriejean

Hi valeriejean, thank you first for responding and yes, he does know Purse breathing from his father's battle. I will remind him of that exercise and also how good his father was at obeying dr's orders and the frustration his family had in trying to get him to listen! I will buy him a pulse oximeter. I can only try to encourage him to help himself.

valeriejean profile image
valeriejean in reply to MAB5

there are many sites w/ information that can help you and him. If you would like to check out Ultimate Pulmonary Wellness they have many videos and blogs to give you great info on line. good luck

camping-girl profile image
camping-girl in reply to MAB5

Hi MAB5 , I too watched my father die from this disease, I was with him when he died, holding him in my arms & to be honest it was a lot more peaceful than I'd expected. I too have been diagnosed with COPD & will NOT be like he was. For a start I stopped smoking 14 years ago ( diagnosed 2 & 1/2 years ago) , I move, I walk as much as I can, Dad was bed bound for years! Rest they said! The best thing your husband can do is move, even if it is around the house! My Dad only stopped smoking when he was on oxygen, because we told him it was too dangerous! I will not be my Father & neither would he want me to be! I walk, I jog round the house! I get as many steps in as I can so this moves my lungs! I'm improving my fitness day by day, yes I keep air in my lungs however I've learned how to keep expelling it, pursed lips. You are welcome to read this out to him & I wish you both well xxx

MAB5 profile image
MAB5 in reply to camping-girl

Thank you, I wish you well too. I wish I could make my husband quit smoking and get exercise. But no luck yet,I will keep trying!

valeriejean profile image
valeriejean

Sounds exactly like my symptoms, diagnosed very severe copd w/ asthma 11 yrs ago. could hardly walk into another room. Only thing that saved me was getting into Pulmonary Rehab and getting educated, learning how to breathe. I also moved to sea level where the air was good to get a better quality of life.. The main thing is to quit smoking if he still is. There is no way he will get better if he keeps this up. I have had a decent ten years from working on my breath and nutrition and attitude. I wish you both the best on the path to healing. I am 66 the only exerbation i had was last year w/ four rounds of steriods and antibiotics, I was very close to dying before the chest infection went away.

Comeraghs profile image
Comeraghs in reply to valeriejean

Attitude has a lot to do with emphysema - but sometimes it is very difficult to stay positive

MAB5 profile image
MAB5 in reply to Comeraghs

Comeraghs, you are so right and his attitude has never been good, so sick like he is, it is terrible. I am worn out from him. Sad to say but true.

MAB5 profile image
MAB5 in reply to valeriejean

I will see about this Pulmonary rehab, hope it is available because he needs to get up and get moving! I hope he stops smoking but the more I mention it the more he smokes. I just wan to get him moving a little and feeling better.

Thanks again

Acstal profile image
Acstal

Hi MAB5, being a care giver is very stressful. In order to take care of your husband you have to take care of yourself in order to keep your strength up. In reading your post I saw several things that are encouraging. 1. His 02 level is in the 90's, is that at rest? 2. He has gotten a Pulmonologist, I found that others Dr's are not familiar with the variances of the disease in individuals, no two people are alike in symptoms or treatment. I was diagnosed in 2014 at the age of seventy, the first thoughts that I had was I was going to suffocate to death and it scared out of my wits because I was feeling things that I had never felt before. Fear of the unknown is a terrible thing and caused me to feel like giving up, thinking my life was over, not wanting to move around and become depressed to the point that I began to think that life was not fair. I was told that my attitude sucked and I was just pitying my situation, I had to change my attitude from negative to positive. With out a positive attitude you just go down hill.

What helped me was getting all the medical knowledge that I could of the many forms of COPD, how it affected and effected me (and the people around me). Got support from the American Lung Association website "Inspire", which is similar to this one. I got a referral to a pulmonologist who referred me to rehab where I learned many tools and techniques that helped me feel better physically and mentally. I asked a lot of questions when I did not understand things, (there was a line in the movie "Philadelphia" when Denzel Washington's character asked a Dr. about AIDS and said "Explain it to me like I am a six year old", I found that it made my Dr. smile, and I got a understandable answer), so I tell my Dr. what I am experiencing, mentally and physically regardless of how crazy it sounds. Most of all I followed and reported on all the things that I was told to do by the Dr.

I am going to stop here because I could go and on. Stay strong, keep reaching out and keep the faith. Blessings

MAB5 profile image
MAB5 in reply to Acstal

Hey Acstal, thank you for your response. I am glad that you have found some answers and I pray his Pulmonary dr can help and educate him on how to help himself. His 02 level 90's at rest. He has pretty much given up on all activity. He has gained 25- 30 extra pounds which is not good. Eats chocolate and junk food when I am not there which is bad for breathing, I think. I don't buy junk food so he gets our daughter to go get it for him.He naps during the day and can't sleep at night. He has oxogen at night and also a CPAP machine that he says he can't use. Just going the 50 feet to the car is tiring to him. He refuses to exercise and is afraid of losing his breath, he panics and then really can't breathe. When I say no activity, I mean it. No help with housework, no errands, no yardwork, nothing. Shaving and showering is a nightmare. I had a treadmill and exercise bike for him, he gave them away. He is depressed but won't take 'nerve pills' as he calls them. I do all I can to try to feed him the right food and make sure he has what he needs but I am wearing out fast. He was diagnosed about 13 years ago, but refuses to stop smoking, eat right or exercise. Not sure I can convince him to change and try but the alternative is not good. He has been on a 10 year 'Pity Party' and only he can decide to help himself. Thank you for support.

Acstal profile image
Acstal in reply to MAB5

You are welcome, I will support you in anyway that I can. Take care of yourself. God's Speed and Blessings.

Pyyyyyyyy profile image
Pyyyyyyyy in reply to MAB5

Until he wants to do something to make his life better, you can't make him do it. Take care of yourself. I am praying for your family.

Sandra1944 profile image
Sandra1944

What is the Hydrogen Peroxide therapy?

MAB5 profile image
MAB5

Hi Sandra, He tried the Hydrogen Peroxide in his nebulizer, used 3% Food Grade in his nebulizer and you can find info on it at Earth Clinic :earthclinic.com/remedies/hy...

He did not like it and thought it hurt him more than helped him. Not sure but I know it can burn if not used at the right %. I am curious if anyone here had results, good or bad. Read up on it and ask your dr before making a decision to try it, and it didn't help him.

Pyyyyyyyy profile image
Pyyyyyyyy in reply to MAB5

I read about it. My daughter is a RN. and was mortified when I told her about the peroxide. I am afraid to do it.

MAB5 profile image
MAB5 in reply to Pyyyyyyyy

I know it sounds strange,so many claim it works, did not for him. I would be afraid too.

Schmicter profile image
Schmicter

Hi Mab,

The truth although harsh is you just can't help someone who won't help themselves. The single and most important thing to do to make any progress with COPD is to quit smoking. I noticed from Quit Support" that you are tying to set a great example. I was diagnosed a few years ago...severe... and continued to smoke for about a year and was really going downhill, even my Dr. told me it will be all downhill from here. That was about 9 months ago. I finally quit and can say the overall improvements are amazing.

MAB5 profile image
MAB5

Congratulations on your quit and yes I have quit as well and so happy I did. My husband was diagnosed over 10 years ago and has made no true attempt to quit or do any exercises that are recommended to help. You are right that I can not force him. I do what I can to encourage him but it is not working. Thank you for your support.

teresa2268 profile image
teresa2268

I totally understand what you are going thru.Sounds like our husbands are quite abit alike.He to is on most of the things yours is.My husband wears his cpap mask every time he sleeps.His oxygen level stays mostly low 90s .good days are 96 for him bad days are 93 to worse being 89.He sleeps at least twice during the day.for few hours at a time an dont go anywhere but the dr. We go to VA in louisville.The lung drs. just tell him to quit smoking which is the right thing to do but is also not happening.They will not let him have oxygen because he still smokes.Only advice i can offer is just make sure u change the filter on his machine an hoses -mask.on all his breathing stuff.They are good about sending the supplys.Praying for you both. Teresa

MAB5 profile image
MAB5

Teresa, our husbands do sound just alike! We do keep those hoses and masks changed and clean for sure. I would like to get him to quit smoking but know better than force the issue. He does have oxygen that he uses at night or when he naps. I don't understand why they won't give yours oxygen, yet. He does not smoke in the house and does not , as of yet, use the oxygen unless he is napping. We go to VA in Lake City or Gainesville Florida. His doctor is local in Valdosta Georgia ( 10 miles from us ) but if he needs emergency care, it is a long ride to Lake City. That is why we now have a local Pulmonary Dr, if he needs help fast the hospital is but 10 miles away. I don't suppose your husband was a Vietnam vet? Just curious if that exposure to agent orange has caused these issues to be so bad. Prayers for you both, as well. Thank you for your response, Mary Ann

Ldycatcoach profile image
Ldycatcoach

Prior to transplant, I took NAC 1000mg daily. It thins the mucus and gives excellent anti-oxidants support. It will reduce coughing tremendously when used correctly and over a period of time (1+ month). You will not see quick results. You must be patient. The flutter valve is also an excellent device. I used it when mucus was present. It will definitely loosen it in order to get it up and out. First, you must use a couple of puffs on your rescue inhaler and then wait about 5 - 10 minutes. (I would even carry mine to the hospital to use when needed. I'd use it after respiratory therapy would leave.). The green one worked best for me. (Amazon.com) Knowing the Valdosta doctors well, I can only recommend that he quit smoking. Support increases tremendously if that happens because they feel their patient will follow their instructions. There are not many "tricks" they can pull out of the bag if he refuses. Maybe tell him that transplant would be an option for him if he would quit (unless he already has extreme heart issues). I had my transplant at Shands in Gainesville in January and I am doing well (except for a few medication side effects - which are nothing compared to the ability to breathe and resume my "grandma" life. . The wait only seems to be about 2 - 3 months since they have been using the XVIVO Perfusion method. If he knew there is better for him, then he may be willing to stop smoking. (?) (I am a non / never smoked lung disease survivor of idiopathic Bronchiolitis Obliterans so I qualified quickly for transplant when my extreme decline occurred. However, many transplant recipients in my support group were past smokers. Now is his time if he wants to investigate this route. They will consider people until age 70.)

MAB5 profile image
MAB5

Ldycatcoach, you are wonderful! Thank you so much for this info. Yesterday I ordered from Amazon the green flutter valve and NAC 600mg. and a oximeter? so I am on the right track and yes, I am constantly trying to get him to quit and I think I am making progress with that. So you do understand Valdosta and the healthcare troubles here. Even the drs tell patients not to go to SGMC if you need to go to the hospital. It's horrible here doctors leaving all the time. Shands is a wonderful hospital, took care of my BIL for a while. Thank you for your time and support, it does give me hope that he can enjoy a longer life right now his quality of life is so poor, Mary Ann

Ldycatcoach profile image
Ldycatcoach in reply to MAB5

When I would be hospitalized at SGMC, my doctor (Valdosta Pulmonologist) would "sneak" in after hours to see me (before they were "officially" called in) in order to avoid the "hospitalist" conflict. I've even had them come in plain clothes and sit and visit in order to check on me! Hopefully this situation is in the process of being corrected. If enough doctors leave (as they are doing) maybe SGMC will finally get the hint. However, for me now, I'm a Shands only admission - even if they have to air lift me there! Hopefully, I will never have to use that option! Mary Ann, you and your husband will be in my prayers.

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