3 replies to this topic

[Ken-FL]

April 2, 2012
Hi! I’m Ken
I am a 62 year old married male living in Central Florida. I am employed full time and work out of my home. My wife is a 5 year breast cancer survivor so we have both been the caretaker as well as the cared for over the past 5 years.

I had struggled with shortness of breath for a couple of years but as a smoker I hid it from others and lived with it until early Feb of 2010 when I awoke one morning unable to catch my breath and had my wife rush me to the hospital.

When I arrived in the emergency room my oxygen saturation was in the 60s and they prepared to intubate me but I had a quick and positive response to oxygen and a breathing treatment so they admitted me and began to treat me with oxygen, albuterol, antibiotics and IV steroids. I was in the hospital for 13 days before being released on oxygen 24/7.

Four weeks after release I underwent a PFT which indicated a FEV 1 of 24%. I was started on Spiriva, Advair, Mucinex, Singulair and Claritin. I was also given Xanax for anxiety. At the same time I was referred and accepted into a Pulmonary Rehab program. I was in PR for 8 weeks during which I determined that if two days of exercise per week was good, 5 days would be better so I started working out in our community fitness center on the days I was not in PR.

It was during PR that I gained enough strength and cleared my lungs to the point where I was able to wean myself off of oxygen during the day and reduced its use to only at night and when exercising. 3 months after being in the hospital I returned to playing golf using a riding cart and getting some help raking sand traps from my playing partners.

The PR program and the exercise I was doing along with the fact that I quit smoking the day I went into the hospital allowed me to feel so good and return to so many of the things I thought I would have to give up that I committed myself to a regular aggressive exercise program and joined a local fitness center. I exercise a minimum of 5 days per week, most often 6 days, doing an hour and 10 minutes of aerobic exercise every day and doing 30 minutes of weight training machines three days per week. I go to the gym at 5:45 each morning since I work and I believe if I tried to exercise in the evenings it would be too easy to find excuses not to. I DO NOT LIKE GETTING UP EARLY EVERY MORNING AND I FRANKLY DON”T ENJOY EXERCISING, but it has allowed me to return to an active life and many normal activities that I would not be able to enjoy without my commitment to exercise.

Currently my lifestyle is not significantly different than it was before COPD. I play golf, we ride our Harley Davidson Motorcycle both locally and on overnight trips and we travel as needed, usually by car. I have an Ever-Flo oxygen concentrator that I purchased and use at home and we usually take it with us when we travel for overnight use. I also purchased a portable concentrator that I can use for air travel but it is a pulse only machine so I don’t use it for sleep. At home I also have liquid oxygen through an oxygen supplier and primarily paid by my insurance that I use for exercise or any time I want or need oxygen for activities out of my home. I am not a vet and not yet on Medicare so my health coverage is insurance from my employer. We have a good program but I have significant co-pays for my prescriptions and also for my liquid oxygen.

As background, we grew up in Ohio and have lived in Minnesota, South Florida, Colorado, Michigan and Central Florida. We have two married children living in Indiana and Michigan and have 8 grandchildren.
In the past I was a Scuba diver, I read a great deal, play golf, enjoy motorcycle touring, I have done cross stitch for more than 30 years, love to travel, photography and bird and wildlife watching. We are planning a 16 day driving vacation to the NE USA this coming September.

Like most people with COPD I worry frequently about the progression of the disease. I have good days mostly but other days that breathing is more difficult and I wonder if I am getting worse. Weather changes can impact me as can anxiety and depression but I have good support from family and friends and am doing much better than I anticipated I would be doing when hospitalized two years ago. Since that time I have had only one minor respiratory infection for which I was treated early with no problems.

Few people without COPD or a close relative of COPD understand much if anything about this disease and particularly how it impacts a person both physically and emotionally. If there is ever anything I can do to offer support and encouragement to someone with COPD or their loved ones I hope they will contact me through BBLW so that I can offer that support.

That is my story! What’s yours?

Ken-FL

[Tim]

My Name is Tim and I'm 54 years old. I am married and live with my wife in a small town in central IL.
We are blessed with three children and three grand children.

I come from a large family. I had 6 brothers and two sisters. I'm the youngest. My Father retired
early due to COPD and died from Lung Cancer. All Six Brothers and one sister died from COPD
and my last living sister is much worse then I am these days. She is 68 years old and has lived
longer then any of the rest who died before reaching the age of 62. I have been tested numerous
times for ALPH-1 and the results have been negative every time. My Pulmonologist is puzzled but
says that they just don't have the science yet to discover what caused all this.

We all agree that SMOKING DIDN'T HELP.

I was one of those kids who always had problems with chest infections and asthmatic like symptoms when
I was young but thought I had grown out of it(as my Mother use to say) through my Jr High and High School
years. I started smoking when I was 13.

After graduating from High School, I joined the U.S. Air Force. After Basic training, technical school and a
short stay in Idaho, I received orders to Germany. The Asthma symptoms returned soon after but I came
across a very good Doctor who introduced me to Albuterol and Theophylline and to this day, I still use
those two medications.

I returned to the States and did well for three years. I was living in AZ and it appears to have agreed
with me but I received orders for another long tour back to Germany. During an annual physical I had
before departing for Germany, I failed my First Spirometry test and after x-rays, a C.T. Blood Gas and
another Pre/Post Spirometry, I was diagnosed with Moderate/Sever COPD with a FEV1 of 28%.
This was before the Gold Standard was introduced.

I HAD NO IDEAL WHAT THEY WHERE TALKING ABOUT!!!

I had a follow-up appointment with a Dr who demonstrated the use of an Albuterol Escape Inhaler
(I'd been using one for years already) and signed me off to Depart for Germany. I was 28 years Old,
married with one small child and another one on the way.

I spent 4 hard years in Germany with many chest infections and increasing SOB but continued to work
with no problems and as long as I exercised(Jogging) I did just fine. I continued to Smoke through all
these years with every Dr I seen telling me to quit.

After returning to the states I found myself divorced and a single parent. We were going through a
realignment with-in the Military at that time and many bases where closing. Early outs where being offered
and having a major responsibility to my children, I felt the best thing to do was to separate from the
Air Force.

I moved my Children to our current Home Town and I worked for another 10 years. First as a CNA
working in Nursing Homes but as my health deteriorated(of course I was in total denial) My wife and
I went to work for a Company that Owns and Operates Group Homes throughout the State for
Developmentally Disabled Adults. I supervised one of their Homes and my wife runs the Day program
for another home. She still works for them.

I was hospitalized in Jan 04 for testing. I had went to the Dr for another unrelated problem and my Dr
told me that my resting Sat's we running between 80-83% and that she wanted me admitted to the hospital
but wanted to get me some oxygen before leaving her office. I was in so much denial and couldn't imagine
myself hauling an o2 tank around. I agreed to being admitted for testing but not until the next day as I had things I had
to take care of at work before I could go. I also refused the o2. I thought she was just using scare tactics to get
me into the Hospital. I'd seen those before... little did I know, how serious it all was.

I was upgraded to Very Sever COPD with a FEV1 of 24% and sent home three days later on oxygen at 3 liters,
24/7 constant flow. I can not maintain my Saturation on conserving devices. I worked for another year with o2
but eventually realized that I was only making things worse... I still smoked at that time and thought I was
never going to be able to quit.

I terminated my employment on Feb 1 2005 and at the age of 46 I applied for Social Security and VA benefits.
I was on active duty during the Gulf War and was first Diagnosed while in the Air Force;therefore, Social Security
required me to apply to the VA for Benefits. I was approved for Social Security within 5 months and Medicare
24 months later. It took two years for the VA to finally make a decision. They determined that they were at fault
for Diagnosing me with COPD and not separating me at that time. I was approved for a 10% disability based
on my FEV1 and DILCO level. I receive a small monetary stipend and reduced payment for medications.
The monthly stipend just covers the cost of my medications but all my O2 requirements are supplied free of
charge. Living on a very strict budget, the o2 was a God send.

I finally was able to quit smoking in 2007 and it has made a world of difference in my daily activities
but due to recurring infections, it hasn't really did much to slow down the progression of the Disease.
I would encourage anyone who still smokes to quit now, the sooner the better.

8 years later, I now use 3 liters o2 at 3 liters for rest and 4 with exertion, 24/7 and have the normal
assorted medications widely prescribed for COPD Patients in the Very Sever Stage. I attend Pulmonary
Rehab (maintenance ) two times a week when I'm not in the middle of an infection or Dr's appointment.
I do take the occasional day off just to do something I want to do but try to stay as active as possible.
Some form of daily exercise helps us in so many ways. From Weight management to easier breathing,
it provides many benefits to help us stay as healthy as possible.

I have worked with Breathing Better, Living Well since Oct 06 and have developed many online friends
who share their daily frustrations, fears, and struggles as well as their accomplishments, achievements,
and most importantly to me, their friendship.

I encourage each and everyone one of you to share your story here, we all learn from each other.

Tim

[Dee]

_{I'm not sure if I should post this here, but since it is about sharing stories, I thought I would share another copder's story here. This was a blog about her life and how copd changed it. Some of the posts, I feel, are quite relevant to a lot of us. I know I recognized myself in this one.}


Never lie to your doctor


I've learned a few things over the past few years from dealing with my COPD. One is if you go to a doctor for help, take his advice; you are partners in your care. The other is not to lie to him.

I tried fairly successfuly for several years hiding symptoms and telling everyone that I was "okay". I was pretty good at walking for a little bit and then stopping, pretending I was looking at something so that you wouldn't know it was because I just couldn't breathe. At work and with my family I would hide that it was so hard to do even the simplest things. I was always tired and getting through a day was tough to do.

I took on more and more responsibility at work but was exhausted by noon. I dragged all the time but didn't want anyone to know. Denial? Yes. Need for control? Yes. I just didn't want to be a "lunger". That's what we called them years ago, maybe still do.

I would go to my PCP and get the scripts I needed to help me breathe, but I always told him that they helped and I was doing fine. I didn't tell him about the fatigue and air hunger. He didn't have a clue and that was my fault.

I was also seeing a pulmonologist but it was hard to get anything past him. He sent me to pulmonary rehab a few years ago after many refusals on my part. I cancelled appointments with him constantly and avoided him because I didn't want too many doses of the truth.

Three years ago I was hospitalized with respiratory failure. I wasn't doing well and the pulmonologist wanted to intubate me. My PCP didn't think I was bad enough to be intubated but the pulmo did it anyway. I was on a vent for a week and it looked pretty grim for me for a while. I was also the dreaded nurse-patient who was horrible to deal with. Although I'm sure it was the medication, I pulled the tube out twice and as soon as I was off the vent, I wanted to go home and I was the one who complained bitterly to anyone who would listen that it was too noisy at night. But somehow I got through it and got better.

A year and a half ago, my pulmo wanted me on oxygen. I was still working and thought he was nuts and refused to "give in". But six months later I went to him in tears, no longer able to keep up the sham that was my life. I gratefully accepted the oxygen that has made my life easier. I do what he says now. He's my partner.

My PCP apologized every time I saw him for a year for not recognizing how bad I was before I went on the vent. But truly he had no idea how much I had declined because I didn't TELL him.

A friend used to have as her signature: "It may be that my life is to serve as a warning to others". I learned the hard way. Thank goodness I didn't die trying to prove how strong I was

[Jane M. Martin]

Such a common story, Dee. Absolutely happens all the time. Great story to share here so people know they're not alone in feeling the way they do; and also so they can learn that being less than truthful with your health care professional doesn't put you ahead of the game in the end. You can keep one step ahead of something for only so long before it catches up with you.

Jane.