I'll Never "Know" or understand COPD

[jarca]

It was mentioned in another thread; that because I have come from another support group & that I have had this disease for 6 years now that I may know the things that this support group knows.
I'd just like to say, that I am learning a lot in a short time joining this new group!
There is great information here!

It seems every time i get sick (and last year was a bad one for me) that I lose some lung function & have to find "a new normal".
Story time  ;
When I was 1st diagnosed with COPD in 2010 I trusted my PCP of 17 years to do all my care. I live 3+ hours  from specialists so when my PCP said she could handle my care I trusted her & took her advice without any 2nd opinion.
In 2012 I had a major exacerbation, left untreated, that caused me pain in all my joints & feet that was unbearable.
Long story shorter: after that dr almost killed me insisting I take steroids that I had/have known allergy to, I sought 2nd opinions. 
I found a new PCP, neurologist, podiatrist & pulmonologist.
antibiotics, a surgery, inserts for shoes & LOTS of physical therapy---oh and a daily inhaler later; I decided I would participate in my life!
I joined the DS support group, asked TONS of questions, read every link posted by others & started to learn how to take care of myself.

So when DS started to fall apart, I was scared!!! 
I need a support group, I need to keep learning about this disease & I need others that are walking this path also (no matter what stage)----
Thank god, that another person posted the link to this group & that you are here for me.
I hope I can give support as well as receive support, but I thank you all for being here, for accepting me.

[gerald]

Jarca, Ibelieve you are experiencing what many of us have encountered. I developed Chronic Bronchitus in 1988, and until 2001 was told "not to worry about it, it would not hurt me", in 2001 I was asked why I was not treating my Chronic Bronchtus COPD!!! By then major damange had already been done.

Unfortunately, as patients, we probably know more about the disease than many doctors and it is all learned the hardway.
Exacerbations (chest illness) is a major major problem. Each one will steal a little bit of lung function. The inflammation causes a bit more problem and speeds up your loss of breathing capacity. So never let any doctor treat them lightly.

I always have a set of emergency med's (prednisone 100mg and Avelox) in the cupboard in case an chest problem sets in. When you chest acts up is the last time you want to struggle to get to a pharmacy.

Also you need an emergency plan set up with yoru doctor in case you do not already have one.

[lavishgail]

Jarca and Gerald, I'm also still learning about this disease and with it came much denial,My Doctors are baffled to this day, only bc of what I've been through.

I'm not really sure I've told my long, Long story, and I will sometime, I not sure of all the big words, and bacially,I had pneumonia 4 years ago almost 5 now, they had to induce me into a coma, for my body to rest for over 11 days, I almost died. This pneumonia I keep getting at least 2x a year. I get extremely scared bc of the life support machine. Remembering waking up and the fear I had.
January, I had to have pieces of my lungs cut out and medicine did not work I was fully aware of what was going on, and It felt like I was drowning wide awake.

The pain was hoffific. It just goes on and on. My doctor now is more interested in a sleep program then pulmonary. So Now I need to get referred to a new doctor.

Very small around here and very hard to even get a doctor.
Anyway, I didn't think I was going to share now but that is some of what I deal with.
Not to mention I still have no answers. Oh and I also have Lupus and mixed connective tissue disorder. A real treat, NOT. .
Have a great night all and thanks for listening. Love yah.
Gail.

[jarca]

I appreciate others sharing their story, so I can get to know you better.

gerald,
My PCP does have me keep antibiotics on hand & a few years ago we formed "a plan" with a suggestion sheet I found on the internet, that had information to fill out & put where others could find.
Mine was outdated & I took it down thinking to print another up & go over it new with my Dr when i see him. I can't find the form now so I guess I will just have to Wing it, with him when I see him tomorrow.
I wish I could find that form again i believe it was from a canadian site also. It was nice as it was done with green, yellow & red colors that you filled in what to do at each stage.

Lavishgirl,
I do hope you find a good Pulmonologist. I didn't realize until I read about it in a different support group (just last year) that Pulmonologists actually specialize too. Most specialize in COPD because it is so common, but some specialize in both COPD & restrictive diseases. I have 2 lung diseases, COPD (emphysema type) & Pulmonary Fibrosis (PF) which is a restrictive disease. I saw the ONE Pulm in my state that also specializes in restrictive diseases. 
My other Pulm I really like & he is very efficient, but it was interesting to go to this other one that ran tests I had never had before. She did all the regular PFT, 6 minute walk test, HRCT & so forth.
She did 1 thing I have never had done & that was she took 6 (!) vials of blood to look for other kinds of diseases that cause lung problems. It tested for  Rheumatoid arthritis, scleroderma and other connective tissue diseases including lupus.
(i turned out normal in all tests, but it was another one of those things that 3 years with PF I did not know there were specialist pulms)
I assume you know that though; so i just want to say my prayers are with you finding a specialist.  In my state there wasn't a lot to chose from (((HUGS)))

It is so nice to hear of others stories that I can relate to as it makes me feel that I am not different or alone in this; so thank you for sharing your stories & I hope others will share there's so we can get to know each other better as we merge together in this group.

[lavishgail]

I also have a Rheumatology Doctor for Lupus and psoriatic Arthritis. Which I have on my hands and feet and my back always hurts.

But I get the breathing tests done in the booth , reminds me of the old time telephone booths. They walk me up and down the hall. They always say you're the same as be4 not great. Idk numbers or any of that. I use my 02 on the move, while active,and sleeping. Sometimes I even need it when I'm just sitting around.

I do the best I can.
Ty .
Love, Gail XOXO

[David]

Jarca, I know what you are saying.

I have had emphysema now for 33 years. In 1983 when I was first diagnosed with the disease I figured that one day they would find a cure or at least be able to halt the disease.

My first 20 years I did not feel the effects of the disease. Never was sick and never went to a doctor. Ten in 2003 I noticed I was getting very short of breath and by 2004 I went on disability.

2013 was a bad year as the disease progressed to severe. Now it is pretty much border line severe to very severe.

I have a Pulmonary doctor and a primary doctor. I let my primary doctor write my prescriptions.
I tell him what works and what don't work. Right now I have found what works for me.

I use the Pulmonary doctor for lung function test and ct scans. All they can say to me is I need a lung transplant. They want me to go and see if I am eligible. A lung reduction surgery is not an option. Doctor said the disease is spread through out my lungs.

I turned that down because for one I can not afford it and two I don't want to chance it if there are complications. I have lived my life and when the end of life gets here then I am ready. I believe in an afterlife.

I am on oxygen at night and when I exert myself. I am ok when sitting. I have no other health problems. I am in good shape other than my lungs.

Last time I was in the hospital was 1983 and I am grateful for that. My biggest problem is Dyspnea. My FEV1 is around 20%.

[lavishgail]

Good Luck my friend David.. you're so very sweet.I hope you live a long time.

And I pray you're not suffering to breath.

Love Gail XOXO.

[jarca]

David,
You are an inspiration! It is amazing that you were diagnosed that long ago! How did they find it back then & were you in very early stages?
I had an Aunt die many years ago of emphysema, but I was young & wasn't ever told she was ill, just that she died of it, so I thought it was some "fast moving" disease.
I had always worried about cancer and never thought about emphysema/copd (i'm trying to find when they changed the term to COPD that includes both bronchitis & emphysema.
I think they confused many people, even Dr's, when they changed it.
I often see information on the web that say's, "emphysema, bronchitis & copd" like even the "officials" that make medicine & do journals don't 'get' that COPD is an umbrella term for 2 diseases.
I am babbling, but I assume you have had many experiences over the years with getting cared for correctly.
I understand the stairs! I am so happy my home is single story.
Thank you for sharing your story.

I also beleive in an afterlife & money causes me  a lot of anxiety---I too chose to go when my time comes & make the best of this time I have.

lavishgirl, I live with a lot of pain also. In 2012 I was told that COPD & pain are not linked. In just the past few years I am finding more information how they are acknowledging the many different types of pain associated with COPD.  I am happy that it sounds like you live in an area that you have choices of medical care.

[David]

Jarca this is the way they found my emphysema.

I worked in the oilfield on a work-over rig. We pulled the rods and tubing out of a well when it wouldn't pump the oil. Usually it is because the rods had parted or there was a hole in the tubing.

Sometimes the well would flow while we were working on it. That is when the oil and gas blow out of the ground and shoot up in the air for usually about 60 feet.

When the well blew out we had to cap it off so that oil wouldn't be lost. Most of the time we would be in a bean field so the farmer did not like the oil ruining some of his crop.

We would get totally soaked in oil from our head to our feet. For some reason it made my nose run which fed my chest and turned into pneumonia.

I would go in the hospital where they would feed me antibiotics intravenously through my arm.

That happened in 1981. I didn't associate the oil with the pneumonia the first time.

Second time was in 1982. Same thing happened again. That's when me and my doctor agreed I must be allergic to something in the crude oil.

Doctor told me to quit my job but I didn't. In 1983 it happened again and I was back in the hospital with double pneumonia.

Each time I went in the hospital an x-ray was taken of my lungs. First two x-rays there was no emphysema. The 3rd x-ray the doctor took me in the room and pointed to a small spot on my lung about the size of a dime and said that is the beginning of emphysema.

I went to LSU Medical Center in Shreveport and talked to an allergist hoping he could help me. He said if it was an inhalant then he could give me a shot that would help but if it is a skin contact then there was nothing he could do.

He was going to run some test but ran into a problem. He told me he would get fired if he ran the test and that LSU would get fined millions of dollars. He said I would have to leave the country to run the test. Some place like Germany or Switzerland.

I asked him what the problem was and he said because the government is protecting industries. LSU receives government money so the government tells them what they can do and can't do.

So I quit my job and moved to Nashville, Tenn so I could find work. There wasn't very many jobs in my hometown.

I never had that problem again after I quit my job. Never had pneumonia and hospitalized again.

[gerald]

Here is the link to the action plan from the Canadian Lung Assoc


www.respiratoryguidelines.ca/updated-cts-copd-action-plan

[joany]

I'm fairly new to this site and trying to figure it all out. I overthink things so it'll take me awhile to find my comfort level. What does Quick Reply mean? How do I do a Slow Reply (see what I mean).

I too with Jarca come from the same support site, but new questions/answers regarding COPD abound. I've been recovering from pneumonia for a few months and expected a "return to my normal." I can't seem to accept a "new normal." All I want is the adjusted normal I had pre-pneumonia. I was diagnosed with COPD about 5 years ago. I've been fortunate over several years for COPD to have had a limited impact on my life. I'm retired so I'd planned to move slower anyway (smile). But now, I'm having trouble adjusting to my post-pneumonia debilitation. I'm going to rehab weekly - last session today. I see my Dr. tomorrow - 2nd appointment post-pneumonia. I'm sure I'd feel better if I exercised more. I get depressed because when Friday rolls around and my day-at-a-time exercise committment has not been met, I only have me to blame. There's always next Monday, but no guarantees.

Gotta' go...

[lavishgail]

Very nice to meet you joany. Just take you're time like you are and jump in when you feel comfortable.
I get pneumonia at least 2 times a year, and I'm scared to death about it.
I'm scared to go out sometimes among a lot of other people for fear I'll get sick. It has happened to me so much. I'm not a germaphob but maybe I'm becoming one lately. Only for all I've been through.

Anyway, I'm glad to meet you, and happy you're here.
I'm Gail.

[ozboy]

Hi Joany..It is Peter (Gwapo) Nice to see you..It takes a bit of time working out where to post things so just trial n error...I am new here as well although i first came in in 2011 but I think the format was different then...Ended up at DS because I needed a very active board then....

If you go to make a Post or Comment then up Top Right is the ''Reply'' click this allows you to upload pics etc from your computer library etc.

The ''Quick Reply'' down bottom is just type in your comment.....maybe a smiley from right side window..

Take care and catch you later on....Any questions re-help with your issues, feel free to ask....Peter xxx

[sharon]

wow David thats a heck of a story. Glad that they at least found what caused pneumonia.
I never get used to this copd. seems to change everyday. Trying to do things and being out of breathe is an everyday occurrence. Even after years of having it get worse, still hard to live with.
I like reading here and learning how it affects others. It is different for all by the way it sounds.

[John]

Hi Joany . Like ozboy said don't be afraid to ask for help ! If you and other new members  don't feel ok about asking on the open forum , you can always send a private message to myself or Jim the co admin,along with the Global Moderators Suz and Mary 57  . Other member I Am sure would also be happy to help ! In a short time you will be comfortable .  4xvim2p  

[Suzanne (Suz)]

Thanks for the link Gerald - and so sorry pneumonia is still affecting you guys - I took the pneumonia vaccine 8 years ago and know on wood I have not had it yet.

To all our new members - take your time. I think it took me a very long time to start posting regularly.

ONce you do it - it's as easy as pie! Take care all.

[jarca]

I also have had the pnuemonia vaccine (23 strains) twice now. I used to get pnuemonia or bronchitis yearly throughout my life & I have not had a single case of it since getting the vaccine. (i was told to be re-vaccinated every 5 years)
They have released another pneumonia vaccine that covers 13 strains to elderly & people with lung problems. It was the one they used for children so it's not new, it's just new to us.
I have been meaning to get it, but something always seems to come up that it's been put off.
Has anyone had this new one? I worry about "side effects"; for those who have gotten the PVC13 did you have any side effects? and do you think it has helped?

[lavishgail]

I've had a pneumonia shot that was supposed to last 10 years, I got pneumonia again.Then from the hospital they gave me all my shots again, only to get bronchitis this time.
When taking steroids, they hide sickness, so they are bad. I don't like them. Good for one reason, bad for every thing else.

[gnott]

I was taking the flu shot every year for awhile. (7 years??) I still got pneumonia twice. Last time two years ago. Both times severe, but if you have COPD I think any case of pneumonia is considered severe. What got to me was how long it took to get over it and how long the hospital stay was for. Pneumonia is no fun. Before, during, or after. (Smile) I also had frequent (every couple of months) bad ER-trip exacerbations that had them wondering if pneumonia or not?

My pulmonologist put me on Daliresp and antibiotics (both controversial), I have not had an bad exacerbation or pneumonia since.

At his recommendation I got the PVC13 last fall. Current recommendation is if you have not taken either is to take the PVC13 first, then the PVC23 at least 6 months later (but GP pushed for waiting a year). Assume it will all probably change again soon. I had NO side-effects (or more accurately, at least nothing I hadn't already got at times and nothing any more annoying than usual. Ha)

[jarca]

TY for your input, Gnott.

I was going to get the PVC13 last fall, but I got sick when I got the flu shot & then it seems like all winter long it was one illness after the other & I never felt well enough to add a vaccine into my system.
I get the flu vaccine every year. I'm not allergic to eggs so don't have a bad reaction, but I often get feeling bad for a week or so after getting it.
The only reaction I had to the PPSV23 pnuemonia vaccine was a sore arm. Maybe I should try the PVC13 1st & then get my flu vaccine 2nd.

I really appreciate the input as I did find a huge article about when to get the vaccinations, but it is confusing me more helping

Gnott it does say to wait a year if you've had the PPSV23=
It does say;
"
What is the recommended interval between doses for adult patients who have already received one dose of PPSV23 and now need PCV13?

For patients who have already had one or more doses of PPSV23, it is recommended to wait at least 1 year after PPSV23 before administering PCV13. If the patient is recommended to receive a second dose of PPSV23, delay that second PPSV23 dose at least 8 weeks following PCV13 and 5 years or more following the first dose of PPSV23."

www.immunize.org/askexperts/experts_pneumococcal_vaccines.asp


Gail= do you know which vaccine you had that you got the pnuemonia on?
H

[David]

The flu vaccines in my area do not use the egg anymore. They use cell-based technology now. I don't know if this is everywhere. Only where I get my flu shot.

I am lucky I have not had pneumonia since 1983. Had it in 1981, 1982 and 1983. After the 3rd xray is when I was diagnosed with the beginning of emphysema.

When the pneumonia shots became available years later I too them. I had one before I was 65 and one after I was 65. They said I don't need to take it again.

[lavishgail]

Wow David how lucky for you!

Jarca- no I don't know, this was almost 5 years ago, and I've had pneumonia ever since! I get the flu shot every year too, but it only helps for one strain of flu, up until last year I believe?

How un-lucky for me.