Tag Archives: COPD

Baby Steps…

Since returning to The Swamp off the Saint Johns River in Central Florida after my birthday trip to Chicago I have started, slowly, to begin a daily exercise regimen. A physical therapist gave me a two page list of low aerobic exercises to do. And sometimes I actually do most of them.

After purchasing my portable oxygen concentrator I have begun a walking program. I’m not pushing it too hard. I do, after all, carry three stents in my heart. Because of my COPD my lung capacity is only 21% of what it should be. Over the last week I’ve been walking every morning and afternoon on top of walking from my boat to the air conditioned “Escape Pod.” Ive been walking in small “laps” to supplement the longer pod walk. Yesterday I walked a half mile all together in bits and pieces.

Last night I opened Google Earth and measured the length of the road I take from the lane out of where my boat is moored to where it makes a 90 degree bend. It’s .3 of a mile. I’m going to give that a shot this morning. Not going to try and do it all in one shot. That’s the goal, however.

The first goal is smaller, yet. In Chicago I had a bad time navigating one city block in particular. I had to stop three times to catch my breath. I didn’t have the concentrator then, just the albuterol inhaler. The last time I stopped I was actually down on one knee! People passing by inquired if I was “all right?” Yah, sure, I just do this all the time to elicit sympathy from strangers.

This is where I walked for a half mile today.

Quarter mile up and quarter mile back to where I’d parked the SUV. Plenty of shady spots along the way in which to rest and catch my breath because I couldn’t do this all in one shot. The oxygen concentrator doesn’t prevent me from becoming short of breath, but it DOES HELP with the rebound time to a healthier blood/oxygen level.

Now, at the end of the day and ensconced on my boat with a fan on me and the concentrator plugged in for charging, I checked my pedometer readings. Including the trek to and from the “Pod” I managed to walk .6 of a mile today. Best day yet.

Not a big deal for most people, but for this 80 year-old geezer it’s progress. Baby steps.

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I Could Use Your Help

https://www.gofundme.com/f/62bc7b-help-me-breathe

My name is Richard.I am an 80-year-old man who needs your help to keep me alive. 

I’ve been battling COPD, a progressive disease, for over a decade. Once it gets ahold of your lungs, it just keeps getting worse. You can’t stop it. All you can do is cope as best you can. Currently, I am puffing along on 21% lung capacity. 

Working on the computer or lying down reading a book, my breathing is as normal as anyones. When I have to move, I fall off the cliff. 

Right now, I can’t walk a city block without having to stop two or three times to catch my breath. A portable oxygen concentrator would allow me to walk and do light exercise, which would tremendously increase the quality of my life.

Good brands like the Inogen G5, Philips Respironics, and the Invacare Platinum are EXPENSIVE. They easily cost as much as $3,000! And an extra battery for up to 8 hours of working time goes for more than $300. 

I exist solely on SS. The cost of a new machine is nearly 25% of my gross annual income. That leaves me in a real bind.

“Aren’t portable oxygen concentrators covered by Medicare?” The answer is: Sometimes. 

Typically, Medicare won’t pay for a portable oxygen concentrator unless you need oxygen 24/7. Well, right now, I DON’T have a 24/7 need. The doctor also has to provide evidence that alternative measures have failed. Other than medicines like Breztri and Breo Ellipta, no other alternative measures have been suggested. 

I have to foot the bill myself though I’ll go through the Medicare process to see if I can get approved. Your contribution is a breath of fresh air.

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I Need Your Help…

https://www.gofundme.com/f/62bc7b-help-me-breathe

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New Doc…New Meds…New Life (sorta)

Followers of these pages know I suffer from severe COPD. To combat the breathing problems when I was living in Panama I used a Ventolin Inhaler which is an Over The Counter purchase. I also had another prescription for something I can’t remember the name of now. It gave me horrible leg cramps. I’d wake up in the middle of the night with my calf muscles in a painful knot. I discontinued taking whatever that was. 

When I returned to the states I was still using the Ventolin. A LOT. More than I felt comfortable doing, but simple tasks left me gasping for air. When I landed a physician on Anna Maria Island he prescribed a once-a-day med called Breo Ellipta. It changed my life. Before the Breo I couldn’t walk 100 yards without spending 10 minutes afterwards truing to catch my breath again. My Ventolin use went from a couple of inhalers a month to one about every month and a half to two months. A great improvement. 

The last few months, though, haven’t been so good on the respiration front. I get terribly winded when I’ve been shopping. I get back to my car and sometimes if takes me more than 5 minutes to get my breathing back to what passes for normal these days. Nearly every time I’m out in public and gasping someone asks me, “Are you all right” My stock answer is “Sixty years of smoking wasn’t a real good idea.” In case you’re wondering, I went cold turkey about 7 years ago and haven’t smoked anything since then.

I have to say that being in Panama helped. Those first couple of weeks were rough. I’d head out to the Romero or Rey Supermarkets to do my regular shopping and tell myself that I didn’t care, I was going to buy some cigarettes while I was there. Next thing I’d know I’d be outside waiting for the bus and no cigarettes. Not a conscious decision. But in Panama they are not allowed to display cigarettes. Used to when I first arrived. They had racks right over the cash registers. But that was discontinued. Out of sight out of mind. Then I return to the “Land of the Free” and you go into Walgreens, Circle K, CVS, 7/11 and behind the cash registers there’s thirty feet of nicotine delivery devices on display. (Yes,, I KNOW, it’s not like that at Walgreens and CVS anymore, but it was when I repatriated.)

Moving over here to the swamp in the central part of the state of Florida put me in another “network” as far as my insurance was concerned. They cancelled my policy without notifying me. Without the insurance the price of the Breo jumped from a co-pay of $45 to a flat out $385! I didn’t buy it. I had to wait nearly a month for the new insurance to kick in and I could buy the Breo at a reasonable price. Man was it ever rough not having the stuff. Just the Albuterol in the Ventolin. I was glad when I could start my daily dose again. 

While the new insurance kicked in on the first of June I had to wait nearly three weeks before I got to see my new doctor. Christ it was like an oriental Doogie Howser walked into the exam room. Either that of being just a couple weeks shy of hitting the 79th anniversary of my birth makes things seem odd. 

The new doc questioned me about my Ventolin use and said he was going to put me on something different…Trelegy. Where Breo has two different meds in each puff Trelegy has three. He gave me two, two-week samples and phoned in the scrip to the pharmacy. With the insurance this stuff is $2 more expensive than the Breo…$47 instead of $45.

I took my first hit of the Trelegy on the morning of the 19th. A while later I walked down to visit with my neighbor. His table and chair setup is about 75 yards or so away. Normally when I get down there I have to sit for a while and take a hit or two off the Ventolin until I’m “normal” again. This time, though,, the Ventolin stayed in the pocket of my jeans. I said I hoped it wasn’t some kind of “placebo” effect.

This morning I went down again. My neighbor wasn’t around and I returned to my boat without sitting in one of his chairs for a rest. Now, when I got back to my boat I was puffing. But I wasn’t gasping if you catch the subtle difference. I didn’t use the Ventolin. Using my breathing exercises I was fine in a couple of minutes 

Once more “Better Living Through Chemistry” has changed the way I’m able to go about my daily life.

 

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COPD Can’t Beat Me!

https://www.gofundme.com/copd-can039t-beat-me

I have started a Go Fund Me campaign. All contributions gratefully accepted…

Hi! I’m Richard, a 75 year old sailor with COPD and I need your help to write my SECOND book.

THE BACK STORY

In my early working life I was a newspaper reporter, a magazine editor and published many freelance magazine articles. But I’d always dreamed of being on a boat. I never wanted to sail around the world, though. I wanted more attainable goals…like doing The Great Loop, a circumnavigation of the eastern half of the United States. Sailing across the Atlantic Ocean had been a childhood dream.

A quote that changed my life came from Richard MacCullough’s book Viking’s Wake. He wrote: “And the bright horizon calls! Many a thing will keep till the world’s work is done, and youth is only a memory. When the old enchanter came to my door laden with dreams, I reached out with both hands. For I knew that he would not be lured with the gold that I might later offer, when age had come upon me.” So, at age thirty, I left a good-paying job as assistant PR Director at a large hospital in Fort Lauderdale, Florida, and became a minimum-wage deckhand on a dinner cruise boat I knew I could take up writing again at any age. I became a U.S. Coast Guard licensed captain of yachts and small commercial craft and spent the rest of my working life on boats. I did The Loop. I sailed across the Atlantic. I transited the Panama Canal. I lived out the dreams of my childhood.

In 2009 I retired and moved to the mountains of western Panama where I wrote my first book: “Adversity’s Wake: The Calamitous Fourth Voyage of Christopher Columbus.” The book was translated into Spanish by two girls at the Universidad Latina in David (dahVEED). I combined both versions into a dual-language book  available at Amazon.com.

In April, 2017, with my lung capacity down to only 34% of normal, I repatriated to the U.S. In spite of struggling for breath after even simple chores like making my bed, I knew I couldn’t let the COPD dominate my life. (Yes! I gave up smoking about six years ago.)

THE PAST YEAR

Back in the states I bought a small, 22-foot sailboat
on the “One Easy Payment Plan,” and cruised from Fort Lauderdale, Florida, across the state and up the shallow waters of the state’s Gulf Coast. I made it to Carrabelle in the eastern panhandle when total renal shut down caused by severe dehydration put me in Tallahassee hospitals for nearly three weeks. When I recovered enough to return to my boat I made my way back down the coast to the anchorage at Bradenton Beach, FL, a little ways south of Tampa Bay. In all the trip was around 800 miles.

I blogged about the trip and posted updates on Facebook as I cruised, but, wintering here at anchor in Bradenton Beach, an idea for a non-fiction, book has been germinating. It has a working title of: Four Feet or Less: A cruising guide for gunkholers.” Gunkholing is a boater’s term for wandering from place to place in shallow water and spending nights at anchor rather than in a marina. The name comes from the gunk, or mud, in creeks, coves, marshes, and rivers. “Boondocking” is the term used by RVers for a similar “off the grid” experience on land.

MOVING AHEAD

In order to finish researching the book I need to revisit many of the places I anchored before to gather more detailed information. To do this successfully I need some extra equipment. Subsisting entirely on Social Security alone it’s nearly impossible to put much aside after paying for dumb stuff like, oh, FOOD, meds, phone. What I need, in order of necessity, are: 1) a reliable, second outboard motor 2) a Go Pro-style action camera 3) a small drone so I can take aerial photos of many of the anchorages.

I need the outboard because I can’t sail anymore. My hands are too painfully gnarled from arthritis to haul on halyards and wrestling with flapping sails leaves me on my hands and knees gasping for air. In the roughly 800 miles I traveled in the past year I only actually sailed the boat about 4 times. Either there was NO wind, there was TOO MUCH wind for a 22 foot boat, or the wind was on the nose and it would have taken too long to tack my way to the next anchorage.

Since many of the places I need to return to are often out of cell phone range and far from the rescue services of Boat US or Sea Tow, a reliable second engine is a safety factor, not a luxury. I’m NOT looking to buy a NEW outboard. A second hand 6 to 9.9 hp two-stroke engine will do just fine. Good USED outboards run about $800 to $1,000. I already have a second outboard bracket on the transom.

I need an action camera because they’re waterproof. I took a lot of photos on my last trip but used it sparingly so it wouldn’t get it wet and be ruined. Again, I’m NOT looking for a top of the line model, just one that will take reasonably sharp photos under all conditions. These cost around $250.

A drone that can carry that action camera aloft for photos of the anchorages would be fantastic! I have photo editing programs I can use to mark routes to the anchorages. A decent drone would cost about $250.

ADDING IT UP

Altogether I should be able to purchase the equipment I need for around $2,000.

Donations of $25 or more will receive a free electronic edition of Adversity’s Wake: The Calamitous Fourth Voyage of Christopher Columbus.

Donations received above and beyond what is needed for buying the equipment will be donated to the American Lung Association.

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Expensive Trip to David (dahVEED) but with some good news

Over the last month, month and a half I’ve been having some serious breathing problems. I’ve been THIS CLOSE (-) to trying to get a cab to take me into the emergency room at Hospital Chiriqui, but that’s questionable at 3 a.m. But I’d do my deep breathing exercises and take a couple of hits off my inhaler and thing would eventually settle down.
 
But it made me wonder if there was anything else that could be done to alleviate the problem. Supplemental oxygen perhaps?
 
After a rough start to Monday morning I went into the hospital and set up an appointment to see Dr. Rodriguez who I’d seen before. I could have seen him yesterday if I hung around for four hours or so but decided to wait until this morning (Tuesday).
 
The appointment was for 10 a.m. The doctor showed up at !!:15. I was second on the list. I went through their routine quickie physical. My blood pressure was normal. ( I take lisinopril and Atenolol and it works fine.) One good note was that the last time I was there I weighted in at a hefty 173 lbs. A lot for me. Today I logged in at 155!
 
I was shocked when to doctor said it had been three years since I’d seen him. I would have guessed a year and a half, TOPS. I asked him about supplemental oxygen and he said that the little gizmo they put on your finger to read your heartbeat also registers blood/oxygen levels and mine supposedly is normal. He had the girl bring in another one and it read the same.
 
Okay, so supplemental oxygen isn’t needed.
 
Next I went in to breathe into a doo dad that measures lung capacity and some other stuff. Went through that and then was given three shots from some kind inhaler. After 20 minutes I went back and did the whole thing again.
 
Here’s where the good news comes in. The first time I did the tests three years ago the results were that my lung capacity was only 34% of normal. The doc said, today, that people with lungs like mine are usually dead by now.
 
The new results show a lung capacity of 48.69%. Certainly not great, but a 15% improvement over three years and shows response to treatment. I have to admit I’ve been slacking off on the meds a bit over the last few months. Since COPD, the initial diagnosis, is irreversible the diagnosis has been changed to “Chronic Bronchitis.” That’s nice even if it doesn’t make the breathing any easier. He wrote me a couple of new prescriptions. I’m continuing the Spiriva and adding addint Simbicort.
There was no reason given for the increase in phlegm, but it could possibly be the result of slacking off on the meds recently.
 
The visit, including the breathing tests clocked in at $110. Through my Hospital Chiriqui health plan I’ll get reimbursed 75% but, of course like all healthcare here it’s pay up front.
 
So I hied myself down to the pharmacy at the Romero supermarket. The Spririva costs $90.22 and the Simbicort is $83.15. However, with Panama’s generous discounts for seniors they knocked $34.67 off the $173.37 tab and I ended up paying $138.70.
 
So, I shelled out $248.70 today.
 
Oh, well!

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