12 replies to this topic

[Bob S.]

Since I am rather new at this role of "Ask the RT", I am wondering how I can be more helpful in answering any questions you may

have for a Respiratory Therapist. So, beginning today, I hope to generate some questions or ideas to encourage you to ask some

questions, so that I may better understand and serve you with questions, conerns, or comments to help you with your COPD

If you would like to actually continue in a "Chat" discussion, I would be glad to try to set up a time, probably between 2 and 4pm

EST on Thursday afternoons if you would like. Just let me know and I would be glad to make arrangements.

So, today, I would like to know: 1. How did you adjust or cope when you were told you have COPD?

2. What issues or areas of loss did you need to address?

3. What framework did you need to place in your life to deal with denial, fear, and or loneliness?

4. What about confusion, isolation, or the feeling of despair? What actions helped you cope?

Yesterday, Sandy shared the importance of reaching out for help, even when we may be uncomfortable in doing so. Her broken

wrist forced her to reach out and accept help, though her instincts and makeup are that of strong self-reliance and independence.

Last week in one of our support groups, a Home Medical Equipment Company cane and shared, with all the changes going on in

Medicare and cutbacks, that maybe we needed to discuss what to look for in a Home Mecical Equipment Provider,

Are there questions you would like to ask regarding reimbursement changes, your questions for the RT in your home care that you

would like to ask?

We as the "Ask the RT" Team, have varied backgrounds and expertise, and look forward to answering any of these or other

questions to help with your Self-management, oxygen, medications, and any issues you would like addressed!

Have a great day!

Bob S FL RT

[Darrell]

Bob,

That's alot of territory that you brought up. Some of the things I have adjusted to, others I continue to battle with on a day to day basis. So I suggest we try to break it down a bit. I'll start with your question 1." How did you adjust or cope when you were told you have COPD?"

I was diagnosed 25 years ago and at that time I didn't adjust much because I had no appreciation or knowledge of what I was dealing with. I am grateful that the single concession I did make to the illness actually came a year before I was diagnosed and that was to quit smoking. My family doctor had often said I shouldn't smoke and just as often I ignored him until I noticed I was having trouble keeping up with some of my friends walking hills and stairs. At the time I was working in downtown San Francisco without transportation so I walked alot of hills. After a year of fits and starts I finally gave up smoking and after another year my breathing had not improved to where I thought it should be. My family doc sent me for PFTs and the circus of advance lung disease was off and running.

I soon realized that I had the same thing as my mother had which she referred to as "bad lungs". My condition included chronic infections but her condition was in rapid decline. I watched her continue to smoke and her condition progressed until she died a couple of years later. I guess by then I had started to make some concessions to COPD. I took up regular exercise at a gym or in hotels or on a bike or basically anywhere and everywhere since I was in international business and rarely stayed in one place very long. I was fully functional but constantly catching some "bug" because I travelled on airplanes pretty much every week.

Over the years as my breathing capacity was reduced and I developed bronchiectasis my range of activities has been curtailed. Over the last 10 years I have become highly allergic and have had to reduce my outdoor activities. I really miss the 30-40 mile bike rides my wife and I did together until about 5 years ago. I went thru pulmonary rehab 5 years ago and continue to exercise at a gym 4-5 days each week, most days getting an hour of cardio and a half hour or so of weights. I use O2 with exercise and at night as I have in varying degrees for the last 5 yrs. Now that was a concession to accept the I need the supplemental oxygen and I still don't like it a bit.

Well this is a start to breaking it down and I hope it will serve as a jumping in point for some of my fellow BBLW regulars and even more importantly for some of the people who aren't as far along this road and still have unanswered questions that we can help with sharing our experience. Have a great day and a wonderful weekend.

Darrell

[peg]

Darrell, I enjoyed reading your background. Thanks for sharing that.

I am going to skip to the end of Bob's request above and ask what changes are we looking at in how Medicare and private insurance are impacting how our Oxygen is being paid for. My nebulizer meds are no longer being paid by private insurance..they are a Medicare pay now. What else is changing and is anything going to not be covered in the future that has been covered in the past? Or are we going to have to contribute more out of pocket due to these changes?

What should we be concerned about and expecting from our Home Medical Equipment Companys. What has changed?

Peg

[Ken-FL]

Bob,
If you go down to the thread my story I have posted how I got to this point in some detail. I appreciate your wanting the background.
Thanks,

Ken

[Tim]

I'd like to take on Question #3: What framework did you need to place in your life to deal with denial, fear,
and or loneliness?

I was Dx back in 1989 while on active duty in the Air Force. I had no clue what COPD was, what the different stages
were and all I was told was to quit smoking. I've been told "that" since I was 13 years old and I paid no more attention
when I was first Dx then I did when I was younger. I've always had breathing problems and avoided extraneous activities.
I thought it was from smoking. I thought all I had to do was quit smoking and my breathing would get better.

I separated from the Air Force in 1995 and went to work for a company that owns and operates Group Homes
for Developmentally disabled Adults. I was the supervisor of one of their Group Homes and my Job was very
active. In 2004 I went to the Dr for a non breathing related issue and ended up in the Hospital for testing.
My COPD DX was upgraded to stage 4 and I went home with continuous o2 24/7. I managed to work for
another year but I wasn't taking care of myself and I continued to smoke regardless of the warnings.

After I quit working, I felt lost. My friends didn't come around as much, we just didn't seem to have much
in common anymore and my family walked around on egg shells, afraid to upset me. We all thought it
was just a matter of time before I died. I was totally lost. This went on for a couple of years and through
all this, I tried unsuccessfully to quit smoking.

One day, my Son gave me a new lap top and told me to make some new friends... That gift saved my life.

I typed in COPD Support Groups and found a whole world full of people with many of the same problems
I had. In 2006, I came across BBLW and met some friendly and very dedicated people. They didn't push
or demand, they offered their help, in any way they could give it. I began to learn everything I could about COPD
and I was finally able to quit smoking through a quit Smoking Group we had going at the time. many of
our long time posters still smoked and we found that with support we could conquer the smoking habit for
good.

I needed support from people who understood what I was going through. My Family cares for me and will do anything
for me but they don't always understand why I can't go out today or that I've been sick for months and just can't
seem to get over it. They can't offer suggestions about what might help, it's not their fault, they just don't know.

I think the support we receive from support Groups, be they online, at a Better breathers Club or through any
other means you can find, helps us to stay involved in life and strive to live on.

Tim

[Ken-FL]

Bob,
This isn't so much a question as an observation. I also don't think someone with normal lung function can appreciate this point.
A normal person spends close to zero time thinking about breathing. The exceptions may be when they have a cold or when they have just compleated a difficult physical effort and are getting their breathing back under control. In either case these times amout to a small percentage of their waking hours and breathing is otherwise an involuntary and mostly ignored process that takes place.

For me at least, I think about almost every breath I take. I will admit that when totally focused on some task or in reading etc I may escape these thoughts for short periods of time but I am otherwise thinking about breathing almost all of the time. It is a major difference between us and normal people and I suspect isn't understood or appreciated by others.

Ken

[peg]

Great observation, Ken, and I totally agree.

[Dee]

Frustration, frustration, frustration.

that there is no treatment that will lead to a cure.
that some days it is so difficult to do the simplest of things.
that even the best made plans can be ruined because of this disease.
that some days I don't remember what it's like to feel good.
that I can't always physically help when I would like to, and must often ask for help for myself.
with myself because I don't always make the changes I know I need to.
with the continual adjustments I have to make to accommodate this disease.

Sometimes the frustration wears me down.

I think that dealing with this has been what I have had to work on the most.

[Ken-FL]

Dee,
We have all been there and this thing called COPD is frustrating but it has also been said that one's altitude is determined by one's attitude so when I get where you are i try to remember to add some balance back in as I have tried to do below. It's sure not all wine and roses but together we can continue to adapt, adjust and make the best of our situations.
Thinking of you and here to support when needed.

Ken

Frustration, frustration, frustration.

that there is no treatment that will lead to a cure.
but there are people with far more challenging issues than I.
that some days it is so difficult to do the simplest of things.
but that means it will be simple for others to help.
that even the best made plans can be ruined because of this disease.
but maybe I can learn to live more spontaneously.
that some days I don't remember what it's like to feel good.
other days I can’t believe how good I feel.
that I can't always physically help when I would like to, and must often ask for help for myself.
asking for help is a sign of strength not weakness.
with myself because I don't always make the changes I know I need to.
but if I take them one at a time and one day at a time I can make progress.
with the continual adjustments I have to make to accommodate this disease.
but life is all about change and my ability to deal with it.

Sometimes the frustration wears me down.
but I have loved ones and friends that help me get back up again.

[Jane M. Martin]

Good morning, all......

Wow, what a great discussion. So much going on. Volumes!

Let's take something from Bob's list and talk a bit about the loss of not being able to do what you used to do.
What have you given up and how have you coped with it?
Have you replaced it with something less strenuous?
If so, how has that affected your life?

Another thing......If you've been reading our forums, "lurking and learning," that's fine. We welcome you to continue do that. But please know that posting and participating can be rewarding in itself.

Having said that, I'd like to ask some of our regular "posters" how participating in an online community helps them cope with COPD or other chronic lung disease (or other challenge in life), how it enriches their lives, and also what kinds of practical tips and techniques they've found from participating in an online forum.

I can't wait to hear from you!

Jane.

[Jane M. Martin]

This topic got buried and so I'm putting it back up on your radar. See you soon!

Jane.

[Darrell]

Ken I too long for the days when I didn't have to think about where my next breath was coming from, just took it for granted. Now it's how can I do this with less exertion, should I be doing pursed lip breathing (PLB), should I grab my portable O2, do I need to get some help with this, etc. It all about the next breath.

Jane what haven't I given up? I've always been an athlete, an active guy. I didn't just watch the kids play soccer, I coached them and played in the coaches league in my off time to learn the game better. Now it's a big day when I can just go cheer for the grandkids. However I have noted that they really do appreciate my being there for the games and we talk about it afterward.

Today the wife loaded her bike into the car and went with a girlfriend for a weekend of trail riding and early beach time. That seems to be beyond my reach at this time, especially with the high pollen levels, so I was off to the gym to ride a stationary bike in a controlled environment. Hardly the same as riding the trails thru the wildlife preserve but then again I didn't have a swarm of black flies chasing after me either. That actually happened a few years ago and left a vivid memory.

The list of things I can't or shouldn't do keeps growing but I manage to keep a pretty full schedule just the same. As a side benefit I've learned to relax a little more, like an afternoon cup of coffee with the wife and maybe an hour of mindless TV shows that I have recorded. It's a nice little pacing mechanism. Other things I do now that I never used to do include shopping, housework indoors, basic cooking (I make a mean hard boiled egg or a tuna salad). Of course being retired changes things too so now I have more time to do things I always wanted to such as volunteer work with the Lions Club, teaching some ESL classes in repayment for some very patient people who taught me to speak Spanish when I was working in Latin America. And then there's the internet where I spend too much time but they say a crossword or sudoku is a good way to stimulate the mind.

That's about all for the moment. Have a great weekend and breath well.

Darrell

[Ken-FL]

Jane,
I think to a certain degree our disease is defined by the things we can no longer do, whatever they may be. I have worked very hard to get myself in shape to give up as few things as possible so I am blessed in a sense by the things I continue to do that I thought I might have to give up. Unlike Darrell I was never very active in sports that required a lot of running etc, I was more into golf, bowling and milder activities. My biggest regrets have to do with spontaneity, air travel, and spending time in the Rocky Mountains.

We have always been pretty spontaneous in terms of what we do, when we do it and travel at a moments notice, but with the need for O2 at night and a committment to daily exercise if possible we now have to plan things out in advance and have to pass on certain opportunities that we would have otherwise jumped at. I know I can do air travel and I own a POC but the hassles of notifying the airlines, getting a currently dated Dr statement of need, having enough charged batteries to complete the flight and arranging for O2 at the destination since I can't sleep with a pulse flow makes air travel hardly worth the effort and for years I was a very frequent flyer and didn't hesitate to fly whereever and whenever I needed too. Over seas travel is essentially out of the question due to battery power needed for a long flight and arranging O2 overseas.

Finally we have spent a great deal of time in the Rockies from Arizona to British Columbia and everywhere in between but the elevations are very difficult for me now and would require 24 hour O2 so I am unsure if we will spend any future time in a part of the country we dearly love.

Having said that, I know a lot of people with greater and more difficult challenges than mine so I am blessed to be doing as well as I am and will try to make the most of every day going forward.

Ken