How long have you lived with COPD?

Posted by puddy68 @puddy68, Sep 30 11:59pm

Hi there - I'm so sorry, this is my second post in 2 days. I think I mentioned in my previous post that I was FEV1 50%. I think I also mentioned [and if I didn't, it would be pretty obvious] that I suffer from severe anxiety and depression. Have managed to push a psych appointment to tomorrow - this COPD has really thrown me. I'm absolutely convinced I only have a few years left to live, no matter what I read [and I'm now staying away from google]. I realised I needed help when I wasn't believing what I'm reading, and I'm driving my family crazy. I have just one question - would people be willing to share with me how long they have had COPD for? I'm sorry for repeating myself........I'm just reaching out for as much help as I can. God Bless.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

@caseymydog1226

Hi there. My name is Kathy . Just got up at 10:15 AM I am not an early riser and don't go to bed till around 1 AM or a bit after.
I take time to get myself organized in the mornings. LOL so will just show you I am responding. LOL Saw all these e mails from the same person one after the other and thought What the H E double tooth picks. Pondered clicking on but thought oh what the heck. So I will write back and we can chat later on. Just so I can mentally keep track of time Where are you located. Last send was 15 hrs ago the e mail shows. Oh 1st one yesterday at 5 something PM. I don't watch my e mails but maybe a couple times a day. I will leave it open thought today.

Jump to this post

Hi, Kathy, my name is Georgie. I live in the San Francisco Bay Area. I have lived here most of my life except when I travelled. Very glad I did some travelling before I got so sick. Now it would be impossible.
I have not been blessed with grandchildren, so I live vicariously through nieces, nephews and friends' little ones! My daughter decided to have labrador retrievers!
I sometimes feel anxious about "What's next?" then I realize I don't have to know or worry.
Enjoy your company. Hugs

REPLY
@grayner

Hi, Kathy, my name is Georgie. I live in the San Francisco Bay Area. I have lived here most of my life except when I travelled. Very glad I did some travelling before I got so sick. Now it would be impossible.
I have not been blessed with grandchildren, so I live vicariously through nieces, nephews and friends' little ones! My daughter decided to have labrador retrievers!
I sometimes feel anxious about "What's next?" then I realize I don't have to know or worry.
Enjoy your company. Hugs

Jump to this post

Today had company for dinner and playing Crib. I am still to clean up the kitchen and it is going on 8 PM here in Saskatchewan Canada. Originally from Spokane Washington.
My son may bring dinner over tomorrow as Mon is our Thanksgiving. Tuesday for sure I am on my own.
Hope you had as good a day as possible, Georgie. Bye for now

REPLY

I had a quiet day and spent time with my cat trying to decide on what to "Unclutter!" My family would very much prefer if I organized my things in my apartment closets, clothes etc. I am really taking on the project because I don't want to leave a burden for anyone! My family is great, loving and wickedly humorous!
I may just do nothing today; not sure! Hope you have a good one, Kathy!

REPLY
@grayner

HI There: Be glad to share info and trails and tribulations about this phase of where my COPD is currently. I think it is so important to be able to talk about how it is affecting us in big and small ways. The act of sharing makes it seem not so insurmountable. I try to find some humor in things that happen throughout the day so that I'm smiling!
I thought I knew a lot about my disease until it started moving through the phases and then I realized I didn't know very much and began to get informed.
My doctors have now restricted my salt intake (due to fluids) and I'm trying not to sneak potato chips! That's a huge change for me.
Hope you are having a good day!

Jump to this post

Hi there Sorry haven't been active Just got back from Thanksgiving Dinner at my son's. Am kinda tired but will be around tomorrow for sure. I gave up salt on my own as my sweet swell. Well still do so up all evening till bedtime. No swelling in the morning but during the day stacks up. Nothing tastes good at all. I have loved salt since I was just a little girl so now everything is just blah.
Ok will be around tomorrow for sure will finally have a chat. If you don't mind what is your name?
This pic was on August 2nd 79th Birthday.
Ok tomorrow Tuesday afternoon I know information overload LOL

REPLY
@grayner

Hi, Kathy, my name is Georgie. I live in the San Francisco Bay Area. I have lived here most of my life except when I travelled. Very glad I did some travelling before I got so sick. Now it would be impossible.
I have not been blessed with grandchildren, so I live vicariously through nieces, nephews and friends' little ones! My daughter decided to have labrador retrievers!
I sometimes feel anxious about "What's next?" then I realize I don't have to know or worry.
Enjoy your company. Hugs

Jump to this post

Hi Georgie. Kathy from Canada. Back from Thanksgiving dinner at my son's. Was wonderful. So stuffed LOL I will be around tomorrow afternoon. I am 1 hr ahead of you at CST. Almost 8 at your house and therefore almost 9 here. Late riser so check FB then Mail and then will hop aboard.
Hope your night is super as mine will be. Well hopefully LOL

REPLY
@caseymydog1226

Hi Georgie. Kathy from Canada. Back from Thanksgiving dinner at my son's. Was wonderful. So stuffed LOL I will be around tomorrow afternoon. I am 1 hr ahead of you at CST. Almost 8 at your house and therefore almost 9 here. Late riser so check FB then Mail and then will hop aboard.
Hope your night is super as mine will be. Well hopefully LOL

Jump to this post

Hi Kathy: Love the picture! I was having a bad day yesterday, so I didn't feel very well until this morning! One of my "Yellow" days that can go either way. I'm trying my best to stay out of the hospital; following a blah blah diet and minimal activity. It is just so not me, but my body is not cooperating.
I have Tuesday things to do that will perk me up and I'll send a cheery note to you later! It's easy to feel depressed; harder to stay positive and with a good attitude at times. I do my best! hope this finds you well. I am going to look around for a picture of me!

REPLY

I have lived with copd longer than I knew. I was diagnosed almost two years ago at Stage 4 . I’m doing ok on Trelegy Ellipta and pulling a tank wherever I go . I plan to live the rest of my life . 😊💜

REPLY

I am currently traveling with friends on the neighbor island of Hawaii. We are having a fun visit. Sadly my smaller stationary concentrator stopped working the other night and I got tired of fighting with my portable pulse concentrator last night so I slept without any O2. It’s not ideal but we will only be here 3 more nights so I think I’ll be ok until I get home.

I’m having a replacement machine sent to my home and will be sending back the malfunctioning machine for servicing.

There’s really no point in listening to gloomy predictions. We will live as long or as short as our bodies allow. I want to live as well as I can. My docs have agreed I will likely live a long life (my folks both died recently in their 90s). I am fortunate that a pulse dose portable oxygen concentrators allows me to be mobile AND stay well saturated.

For folks with higher flow oxygen needs liquid oxygen is an amazing resource. We are supporting the bipartisan SOAR act that among other things will help increase reimbursement for it for patients with high flow needs. It is stored in a medical grade thermos that turns from liquid to gas O2 that you breathe. You refill it from a small reservoir that you periodically get refilled. I first used it in Denver about 20 years ago and was able to get it prescribed for me in 2016 until Apria took it away from me and everyone in our state 4 years later in 2020.

The COPDfoundation.org and American Lung Association and others are urging all to contact and met either members of Congress to have them cosponsor the SOAR act on supplemental oxygen THIS year.

REPLY
@grayner

Hi Kathy: Love the picture! I was having a bad day yesterday, so I didn't feel very well until this morning! One of my "Yellow" days that can go either way. I'm trying my best to stay out of the hospital; following a blah blah diet and minimal activity. It is just so not me, but my body is not cooperating.
I have Tuesday things to do that will perk me up and I'll send a cheery note to you later! It's easy to feel depressed; harder to stay positive and with a good attitude at times. I do my best! hope this finds you well. I am going to look around for a picture of me!

Jump to this post

Hi. I am so bad at getting back to people as I don't know just funky lately. Go through the motions as I am a pretty private person and have always been. A while back my son asked, How are you doing Mom? He said never mind you never tell the truth anyway. Just me. Now this is different IMO.
Winter is coming and here in Saskatchewan Canada it means, realistically right, my Jeep will be garaged for the duration. I knew my son was right when he said it should be put away as slipping and falling just isn't acceptable. Big time I can't get up. LOL He looks after things for me big time. Takes me to the store so pulls up to front door gets a cart and waits till I am inside, parks and then joins me. That part he needn't do and could go do other things. Nope not happening. I have learned how to do my shopping online at Walmart and that is exceptional. Here at our little area they do not do delivery but son picks up and delivers.
Ok now tell me how you are doing and update.
Hope all is as well as possible.

REPLY
Please sign in or register to post a reply.