My COPD history

My COPD history

Hi folks across the "Pond". My ancestors came from Sussex England from the 1600s.

I live in the USA, and have had COPD since the early 90s. Did not quit smoking even after my Dr. said I must. Finally after 5 tries I was successful quitting about 15 years ago. My pulmonologist put me on 2ltrs of liquid oxy in 2004, so now it has been 12 years and I am still on 2ltrs. At rest my levels remain around 97 saturation without the oxy. As soon as I get active it begins to drop, so I must hook up while I am busy. I use 2ltrs all night and off and on during the day. My lung capacity is holding at 20% currently. I am able to live alone, grocery shop, drive and walk on my treadmill daily for 30 minutes. Always have my portable oxy when I walk out the door. Recently a lung scan found a nodule on my left lung. Oncologist is keeping an eye on it. Has not spread and may never.

57 Replies

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  • Hi, Jim, and welcome to our forum. I am also a COPDer who has used oxygen for a decade, my current FEV1 being 14%. I did give up smoking once I was told but unfortunately was already at 22%. It is good to hear that you keep busy and manage so much and good news about the nodule.

  • Thank you for the greeting. I am not familiar with FEV1. Can you enlighten me? Maybe we call it something else here in US. I am now at 20%.

  • Welcome bimjales, nice to hear from you. I care for hubby Pete who has sarcoidosis and COPD but is not on oxygen.

    It's great that you are looking after yourself and managed to give up smoking.

    Take care xxxx

  • Pete is s lucky man to have you. Hope he never has to go to oxy. Keep up the good work.

  • Thank you bimjales, it's nice to be together. Take care. Xxxx

  • Thank you Sassy59. You take good care too. :)

  • Welcome to this amazing group. You are doing very well. I admire your courage and persistence. Were your ancestors on the 'Mayflower'? And we're they Puritans? One of our members is seriously into genealogy.

    All the best

    K xx

  • Welcome, Sir!

    Michigan here :)

    You will find much more support and care from this group than you ever imagined. We welcome you will open arms!

    GREAT JOB on quitting those nasty sticks! You don't need em'! And it sounds like you're doing just fine without em'! 💪🏼 keep it up! :)

    I hope your summer is running smooth..

    God Bless!

    Amy

  • Thank you Amy. I know what you mean about those nasty sticks. Every time I see a smoker I think to myself, "if they only knew", but I never say anything. Summer is very hot and humid here, but I have cold A/C in the house and car. Thank you very much.

    Much love, Jim

  • Hello Jim--im in US too--I quit smoking after 53 years and have been thru hell--I see a pulmonologist the 25th=-=Was recently hospitalized--because used an inhaler for shortness of breath and went into a-fib--In the hospital they gave it to me a gain thru a nebulizer--even after I told them not to-they said that one was different--never again--my heart went from 180 to 80 up and down--almost killed me--I don't know if I have chf, My lungs had 2-3 lbs of fluid in them,or copd,I have had pvcs for years--but they have me on a fib and hbp drugs--all a great pain-=I use 2 litres of O2 at night or when I feel I need too--Heaven when I got that--Depending on my upcoming dx I may not be able to keep the O2 unless I pay out of pocket--I am also up for a sleep study as it appears I have severe apnea which they saw in hospital--so Im on the fence--Im taking pills for HBP which make me sick-Id like to quitem but when I do my heart starts jumpin--I think some of it is anxiety--I live alone and worry myself sick. I get out in public and get sob and panic--Im getting so I hate to leave home--I did go to store this am at 7 am--and made it ok but hell carrying groceries up to 2nd floor-well Just wanted to tug on your ear--Maybe you understand how scarey it becomes when you have your own head running wild with what ifs>> Nice to meet you * MmeT* Did you see Calif fires size of san Francisco ==80,000 evacuated--what is happening to our world--Im afraid to say what I think--

  • Hi MmeT, Looks like you have a lot going on. I find that when I feel myself "going off the deep end", I just say to myself, "get a grip Jim". Anxiety does tend to come with the territory. Also, I totally get what you mean about going out the door. Never bothered me before, but I have noticed lately that I prefer to stay home. Just had a Cat Scan recently that disclosed a small nodule on my left lung, so that is my latest thing to face. The Drs are going to leave it alone for the time being as it has not shown up anywhere else in my body, and they feel that taking drastic measures might compromise my lungs, so another scan in a few months to see where it's going. Thanks for listening to me.

    My best, Jim

  • Hi Jim--It seems hard to get things in perspective at times--I think anxiety is the worst part of it-I just panic when I get sob---I have never liked going to Dr--Of course many don't but my father sort of drilled it in me they weren't to be trusted and that has not helped me--I have trouble allowing much beyond blood tests and a few procedures..My parents both had heart and lung problems--died from them so again there I go worrying-----I do wish I could just live day to day and be happy--and I do at times--but there is more of the others--Finding a nodule on your lung is not a small thing BUT not as huge as you may be making it right now--Almost be better if they checked it out and you knew- Have you ever done a sleep study?/ Boy Im looking forward to that one--Cant wait to wear a helmet to bed or whatever apparatus it calls for=-=but I do want to live--This is the age of doing things we don't want to--and facing challenges we never even knew about---Its nice communicating with yiou--where are you?? Im in Northern Plains--xxx MmeT-

  • I believe that you will find my specifics at my profile. I live in Charlotte, N.C. USA. What is Northern Plains please.

  • hi again--I am in South Dakota-so hot and muggy here today been in front of air all day--hope you are having a good day--MmeT

  • Always hot and muggy in Charlotte this time of year. Winters are mild, so I get out more then.

  • Hi Jim,Another unbearable day here--That humidity is a killer--Dewpoint was 76 at 10 this am ==really high==I played with a few plants on patio and came in cranked up air and took a nap--90s again tomorrow and then drops to 70---oh cant wait--all sealed up in here alone--is just not healthy-I hope your day is going ok--I sure pity the poor folks in Baton Rouge--They have a whole different kind of battle--Really my weather woes pale in comparison= xxxxMmeT

  • Yes, we are fortunate to not be going through that horrible flooding. I just got back from a trip to the bank and post office. Thank goodness for cold A/C in the car. I am looking forward to the cooler temps too, but that doesn't come til sometime in late September.

  • Hi Jim,we get 2 days of 70s and then back up but not till Friday--and then storms with it--but that's ok--Id like to dance in the rain--I hang blankets over windows to keep a/c usage down and heat out so it gets pretty weird if we have days of this heat--I get kinda disoriented--My biggest fear is that fighting for air feeling--I just panic so I probably overdo it keeping the heat out but it cuts my bill down--Last month was 150--Pros and cons to everything--I watched talk shows with a/c on me and O2 this afternoon--air air= sweet air!!!!! I had a spirometry test a few months ago and passed it--can you have copd and do that--? Im just wondering what this Pulm.Dr going to do besides sleep study--Hope I can sleep--been getting up at 4 am--I guess Id rather have apnea than copd--will probably see a cardiologist after that and have to see Gi--I kinda let things go for a few years so I have to get well now--as much as possible xxx MmeT

  • Do you have any family or friends nearby? I worry that you are isolated. I care.

  • Pretty much on my own--Have a few friends in case of emergency--and you?? MmeT

  • I live in a retirement village, so have lots of neighbors that I am pretty close with. One friend is 10 years older than I am and can run circles around me. Good genes. I also have a nephew that I am very close to that lives about 15 minutes away.

  • very nice--I am 67--id love that but im on medicare so don't know if they take that--tired of worrying daughter---Mmet

  • I'm sorry. Don't know what you meant by "don't know if they take that" Take what Cheryl? :)

  • medicare as payment in retirement homes

  • Oh, I got it. No medicare does not cover this. My situation is that I came here to this house to be my mother's care giver. My marriage failed and I had no reason to stay in Los Angeles. Took care of my mother at home for 10 years til she had to go to a nursing facility. I just stayed in the house as it was paid for anyway and it is located in a very upscale mobile home community for age over 55 years only.

  • bimjales welcome to the site sounds like you have it all worked I was diagnosed in 2012 big shock ID given up smoking in 2003 so that was a bonus best wishes x

  • Thanks and good for you!

  • Oh forgot to tell you --My relatives came from Suffolk Mmet

  • Got it M. Thanks.

  • see you are in north Carolina--MmeT

  • Just wanted to say hi Jim and welcome to our lovely community. Well done on the treadmill, I have 20% fev (though I think it's prob lower now) and on oxy 24/7. Hope you enjoy your time on here, I know I do! Xx

  • Hi Sheilab, Thanks for the greeting. Have already felt more than welcome. Xx to you too.

  • Hello Jim welcome to the forum. You are doing well, I'm 20% myself. My fathers family are from Sussex, very nice place.

    Kim xxx

  • Thank you kimmy59. I have never been to Sussex. Sounds lovely.

  • Hello Jim and welcome to the group!

    I'm a Michigander myself :)

  • Thank you for the greeting. Michigan is a wonderful place. My brother and his wife vacation there in the summer at Lake Leelanau.

  • Leelanau translates to "delight of life" which is fitting for the beautiful area.

  • Thanks, I never knew that. I'll bet my brother and his wife knew that. :)

  • Kansas here bimjales, you're going to love this forum! My peeps came to the party late (about 15-20 years after the American civil war) from Sweden, Germany and Scotland on my dad's side. My mom's family are from England, France, and Ireland. The only ones I actually spent time with were my great grandma and grandpa from Sweden. He was a chiropractor with his practice in their home.

    grannyk3 🌹

  • Thank you. I already feel welcome. My family are all from Britton. Dad's side from England and mom's from Scotland.

  • I noticed in your profile that you use to live in L.A., I lived there for a few years. My brother and I took a vacation to San Diego during whale watching time not long ago.

    grannyk3 🌹

  • I have done the whale watching in L.A. too grannyk3. I moved to Los Angeles from Rochester N.Y. when I was 33 years old. Move to N.C. after a failed marriage. I have one daughter and two grandchildren from that marriage, so it was not all lost. :)

  • Granny you and I are not far apart--kinda nice to know that--Mmet

  • 😊 I'll be moving to Iowa in the next 6 months so that will be even closer.

  • Hi again Granny--where in Iowa--? Im in Sioux falls--If close that would be incredible--maybe actually meet sometime--MmeT

  • Iowa City, it's still quite a distance. My youngest son and his family just moved up there and I am to follow in a few months.

    gk3🌹

  • that's great=-==well still nice to have you close--you never know--MmeT

  • Yeah, it is and kinda funny we met by way of Britain. I'm over the moon tonight, finally rain.....lots! The pollen has been high and making me feel awful the past two days.

  • Yes I thought about that too--and oh happy day--we got rain too 58 degrees now 70s all weeknd--what an awful summer we had but almost over--MmeT

  • Unfortunately the worst allergy season is Autumn for me. I did better this Summer than last year so I can't complain too much, but then there were mold and dust issues that have since been taken care of.

  • Hi Jim & welcome. Fev1 - Forced Expiry Volume in 1 second - is the volume of air you can forcefully expel from your lungs in 1 second, after full inhalation. That can be expressed a % of predicted, or % of volume (known confusingly in some places as Fev1% or Fev1/FVC ratio). You'd need to be sure which it is as they could have different diagnostic implications.

    en.wikipedia.org/wiki/FEV1/...

  • Okay, thanks for that explanation. My Dr. does not necessarily share that stat with me. Just the capacity remaining is all he talks about.

  • Thank you. Just looked at my health records and my Fev1 is 20%

  • Thank you for posting and you sound very upbeat and active. I was diagnosed with COPD in 2007 and I have always had Asthma. Gave up smoking over 20 years ago. I lead an active life and have a dog who I walk at least twice a day come rain or shine which I love. I cycle a little as well.

  • Keep moving. That is very important. I love dogs and cats both, but due to allergy to the dander, I can no longer tolerate living with them. Have lots of dog friends though. Thank goodness that I can still drive and take care of my personal needs.Thank you for your post to me. :)

  • Hi Jim, welcome from The Lake District of the UK.

    The people on here are marvellous, I've had such helpful informative advice, my doctor doesn't know what's hit him.

    Take care

    Steve.

  • Thank you Steve.

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