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COPD - looking for folks in the same boat

Started by iona

26 Nov 2012, 5:14 AM

Hi I'm looking for folks in the same boat as myself. I am a 56 year woman, dieing of lung disease COPD ...I'm told I'm at end of life stage..and some days it feels like that..I try not to think about it too much and staying in the present of here and now at this moment...I live basically alone meaning I am single tho I have a roomate although we are not close and he is not around much... so really I live alone... I have two adult children, they live about an hour away on a small island where they work and have busy lives so we don't see each other as much as I would like... maybe an hour or so every couple of weeks tho a month can easily slip by without seeing them unfortuately... I feel quite isolated and as I become more homebound I realize my isolation hurts me.
So Iam reaching out looking for others who perhaps are in the same boat and want to connect.

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Reply by moderator | modératrice

26 Nov 2012, 2:06 PM

Hi Iona,

Welcome to Virtual Hospice. I'm so glad that you found us. While we don't have many people sharing about COPD on our forums at the moment, we do have one member who would really like to share with you. Please meet tacos.

Tacos has started 2 conversations that you may like to read:

COPD & Bronchiectasis

my lung disease

If you post a message to either of these conversations, tacos will receive a notification and I'm confident he'll share online with you.

Of course, when if comes to facing the end stage of life, we have many things we may want to share that are not disease specific. Have you seen this conversation started by passirose?

Starring the end in the face and living now

We look forward to getting to know you better and sharing with you whatever you need to talk about.
Colleen

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Reply by Glasslady001

30 Nov 2012, 11:00 PM

Hi Iona,
i am so sorry to hear about your illness. I was just recently diagnosed with COPD. I am 53.
just a week prior to my diagnosis my husband was diagnosed with coerced, then my father a few days later. I find myself thinking more about them than myself. I am in stage 2, so have some time to go. I can only imagine what you are going through...

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Reply by winsome

02 Dec 2012, 3:23 PM

My mother is 82, was diagnosed with copd 5 years ago and quit smoking one year ago. She is now experiencing difficulty with her mobility and panic. She lives alone and my siblings and I are unsure as to what to do for her.

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Reply by iona

03 Dec 2012, 1:21 AM

Dear winsome ...don't leave her alone...if you or yr siblings can possibly open yr home to her, take her in... it is so much better to have folks around....I know it is alot tho she may pass quickly and you'll not have much time with her... It is quite terrifying dealing with this alone...Hydromorphine is the only thing to calm the shortness of air...get yr mum on it if she is not... ST Pauls Hospital is a big advocate of this treatment...They are a leading teacher in managment....my heart goes to you

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Reply by iona

03 Dec 2012, 1:49 AM

Dear Glasslady001

I am so sorry for you....Please yr sake manage yr disease well with meds and getting away from the irrants that caused the copd... for my it was smoking, black mould spores and wood stove smoke.... keep as much wieght on as possible by eating well... excerise to keep yr muscle and really try not to waste.... I'm about you have add stress of other's illnesses ...hard not to worry about or put them first tho remember if you focus on them instead of yrself TOO MUCH then you will be doing yrself a dis-servus.... Stress recks havck with copd so as silly as it sounds try to stay stress free.... my heart goes out to you...

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Reply by tacos

04 Dec 2012, 9:01 PM

Hi Iona - This is tacos responding... From your e-mail, i can't tell if your in a more advanced state of lung disease than me. You talked mostly about being isolated which isn't a problem for me. In fact I feel better when I am isolated. I find having people around affects my breathing, makes me nervous and therefore stressed. Now, I don't live alone, my wife is here. But she gets out almost every day, church, women friends, cards shopping, etc. so I'm alone quite a bit.
It feels like my day is mostly maintenance... of my body. Breathing exercises, leg exercise, upper body exercise, inhalers, back patting, soaking feet, stationary bike, blow-pipe, etc. etc.
All of the above is just introductory to what's really on my mind.
I'd like to find out from people who are in a more advance stage of lung disease than me, what I will be facing in the next year or 2 in terms of pain, breathing difficulty, sleep difficulty, etc.
Right now I have absolutely no pain. I sleep very good, although I have to use a VPAP machine all night which means I have to sleep in one position, no turning. My breathing is getting worse month by month, to the point where I have VERY little energy, I can only walk 50 feet without a walker, climbing steps is VERY slow.
I cough a couple hundred times a day, and I must to get rid of the mucus. This mucus is what's filling my lungs and is getting stickier day by day. About once a week I cough bright red blood instead of mucus.
I tell you all this just to give you context to my question... If your more advanced than me, what are you experiencing in the areas I've listed?
Thanks, tacos

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Reply by iona

06 Dec 2012, 12:10 AM

hello Tacos.... You are lucky to have yr wife around when she is...I live alone and it is getting to the point where I want folks around to help not only with all the chores/ house and personal tho also with the panic .... I think this disease affects each of differently so end of life stage looks different for each of us... It sounds like you are getting far better exercise instruction than I... I would love to get my back patted !!.. What is a blow pipe??? Why do you soak yr feet?? I'm told that it will be infection that will likely take me out... eating enough to keep weight on is my biggest problem...so I'm very thin... I do not cough alot and mucus so far is not a huge problem....drinking lots of water helps the mucus I'm told... Weak and very little energy I can relate to ...tho I am still toileting myself... I have no physical pain only panic due to SOB. Morphine is the treatment for that... also ativan... I have no show of blood... For me isolation is the biggest problem...yes I understand about feeling stress from folks, guess the trick is being conflict free and comfortable...
I understand how you want to know what's coming next.... Me too and often come up with blank answers from the professionals because it is so different for us all... anycaes tacos, I hope you stay in positive spirits, appreciate the company you have because it helps to keep you strong, eat well, keep up yr exercise. It was nice to connect with you

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Reply by tacos

06 Dec 2012, 7:56 PM

Hi iona - Thanks for your response. It looks like our symptoms are quite different.
Maybe it's because I also have bronchiectasis (google it). Because my main problem
is the mucus which reduces the usable volume of my lungs and must be broken loose
and cleared out. So I have 5 spit bottles around the house for all the coughing and
spitting which goes on all day. Enough about that!
I take an antibiotic every day which is beginning to cause an increase in bowel movements.
Are you on anti-bios?
To answer your questions...
1 Blowpipe - This is a pipe-shaped device, in the bowl is a large ball-bearing. When I
blow thru the pipe, the ball vibrates very fast as it allows air to escape. This causes
my lungs to vibrate, loosening the mucus from the walls of my lungs which I can
then cough up and spit out. This is my most effective tool. Since you don't have much
mucus you may not need one.
2 foot soaking - since I do almost no walking my feet & ankles swell... one heel got
infected as a result so I soak both in salt water.
Good luck - tacos.

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Reply by iona

07 Dec 2012, 4:54 AM

hello Tacos

I don't if this will help tho it comes from a resource person who I highly regard as helpful and very up to date on COPD.... it is for excessive mucus..It can be bought thru a health food store I'm told tho phone around to find it, if you want to give it a try...

Acetycystine...sometimes called mucomyst....I'm sure you have tried everything, including laying over a huge excise ball and bouncing slightly... I live in a small rural area so we don't have alot of local therapsitis around, They mainly travel here for consulations or sessions...
I am still walking very short distances tho still walking.... I would like to have folks to walk with...I need to exercise more... I only take anti biotics when infection presents itself... nothing daily or even monthly...I feel lucky to not have secondary conditions...That must be hard Tacos....

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