Well, now that I've vented my spleen regarding Mr Trump on Facebook, I'll fill you in on the health update.
I've just taken the Pulmonary Fitness Test and the primary result (the DLCO which measures the lung's ability to transfer oxygen to the blood) declined to 27%. As I wrote before, the lower the value, the lower the ability to transfer oxygen. In general, a healthy individual has a value between 75% and 125% of the average.
Here's mine over the past year:
Nov-15: 34%
Jan-16: 35%
Aug-16: 32%
Nov-16: 27%
I had expected a decline based on my symptoms ... needing oxygen more frequently and at a higher level. Unfortunately, I find that even short walks of 50 or so feet are becoming more difficult without using oxygen since my saturation levels drop fairly quickly as I walk. And I plain tucker out much more quickly and just don't have a whole lot of energy in general.
Plus, it seems that attending the theatre is a trigger event! I was first diagnosed when I passed out after climbing three flights of stairs at a community playhouse a year ago. Then, a few weeks ago, I passed out at the Guthrie after walking up a set of stairs and a sloping ramp. As I told Barb, both events were breathtaking!
My pulmonologist has suggested we change medication from the current wonder drug (Esbriet) to an alternative wonder drug (Ofev). So, we're now heading down that path ... which includes seeing if we can obtain assistance in copayments as both medications require fairly stiff copayments under Medicare's Part D coverage until the "catastrophic coverage" kicks in. (Esbriet required a copayment of $2700/month which dropped to about $400/month once the catastrophic coverage began). Fortunately I qualified for a grant to cover the Esbriet and understand there are similar grants available for the new medication. Costs for both are relatively similar ... and neither cures the fibrosis but is believed to slow the progression.
Other than that, we'll just keep on keeping on. Later we're visiting Chicago with our adult kids and grandkids. I'm looking forward to that. Plus my brother, Roy, and his wife are joining us to celebrate Thanksgiving.
In February, I'll take another fitness test and have updated readings plus a CT scan of my lungs which will more specifically measure the degree of how much the fibrosis has advanced.
Thursday, November 10, 2016
Friday, May 13, 2016
It is what it is...
Several folks have asked how I'm doing and I realized that it's been awhile since I've sent out any updates about my health. (For those who don't know what I'm talking about, click Here .)
A couple of phrases that I learned while working up in North Dakota and Western Minnesota the past several years come to mind: “Keep on keeping on” and “It is what it is.” And that pretty much speaks to how I'm doing. I'm keeping on and it turns out that Pulmonary Fibrosis is what it is.
We've settled into an uneasy accommodation with this disease. For example, I take a “small” oxygen tank with me if I think I'm going to be walking any distance. I also do a much better job of planning ahead so that I not going to be caught breathless or decide that I can't do something because I don't have oxygen tanks with me.
So far I'm not needing to use oxygen when I'm at rest except on very unusual days. However it's difficult to know when a day is going to be unusual or not. That offends my need for predictability but it is what it is.
I often find that I grow both physically and mentally fatigued in the late afternoon and more irritable. I'll be more forgetful and have a more difficult time finding the right word to say or write. Generally that's accompanied by an overall sense of weariness as well as a feeling of heaviness in my arms.
The antidote is taking a 30-45 minute “refresher nap.” I don't like to take naps because it tends to make a regular bedtime more difficult to achieve. But slowly I'm getting the hang of it.
All of these symptoms are very similar to what I experienced when Barb and I took the kids out west and visited Pikes Peak. The lack of oxygen at the top of the ascent caused exactly those same symptoms. So I've decided to rule out mountain climbing as a hobby for the future. Sorry, Mount Everest.
Shortly after the diagnosis, I started taking a medication called Esbriet. While others have reported physical side effects, I haven't experienced any significant ones. There is also a higher incidence of liver damage with Esbriet but my monthly lab results have been unremarkable.
Esbriet doesn't cure the disease but slowed down the progression of fibrosis for many (but not all) patients in clinical trials. In September I'll retake the pulmonary function test and we'll have a better idea of whether (or how quickly) the fibrosis is progressing.
Esbriet is a very expensive drug. The annual cost is slightly more than $100,000 and my copay would be about $7000. Fortunately there's an organization which provides grants to help cover the copays.
I was extremely happy to get the grant because they're very difficult to obtain. Applicants need to be singularly attractive and highly intellectual. Well, that's my story and I'm sticking to it.
So, we keep plugging ahead although my mantra when walking is now “slow and steady” and I often find myself filling the role of Tail-end Charlie when walking with Barb. That's a reversal so I think her legs have grown longer.
I'll write more in 6-8 weeks or if things change substantially.
Wednesday, June 02, 2010
Mercury ... another one bites the dust
The obituary reads:
The Ford Motor Company said Wednesday that it would stop production of Mercury vehicles in the fourth quarter and discontinue the brand. (NY Times 06/02/2010)
My dad was a "Mercury Man." His first car was a 1950 Mercury that he bought from his uncle. It was a four-door classic black sedan. I remember vividly that it had a stick shift, a starter button on the dash and that I moved it forward at the tender age of four or five by pressing said button while it was in gear.
I also remember sitting in the spacious back seat (upholstered in an itchy-scratchy grey velour) on the way home Sunday nights and listening to Mom and Dad talking while listening to Howard Miller on WIND radio.
Here's a pretty good picture of how the car looked and its interior. I honestly didn't recall the "suicide doors" .... cool!
The '50 Mercury died a noble death while saving the life of my dad. A family emergency required Dad drive from our suburban home into Chicago. He took a curve at too great a speed, rolled the car (way before the days of seat belts) and walked away unscathed.
The replacement for the staid 1950 Mercury was a svelte and sporty 1957 Mercury in two-tone Red and White with black and white houndstooth interior. Unfortunately it was more svelte than dependable. At least three times we tried to drive from our home in Lombard down to New Salem. Each time we had a break-down and failed to make the trip until we replaced the car with a more dependable Mercury.
The two-tone color scheme is shown in the top of the photo to the side. Ironically, my Dad really, really wanted the blue-and-white model but couldn't wait for it to be delivered and took the red-and-white one as it was in stock at our local dealer.
And, as luck would have it, our local dealer was within a mile of our home. While Barta-Gorski Mercury was a relatively small dealer, it did deal fairly with Dad and vice versa. He bought a total of three cars from them and would have bought the last two Mercuries there if they'd stayed in business.
Due to wanting more dependable transportation, Dad traded in the 1957 Mercury for a 1960 model. It was one huge car. I learned how to drive and got my license in the 1960 Monterey ... even passed the parallel parking portion of the test despite its daunting size. (In comparison, the 1960 model was 7 inches longer and 3 inches wider than the Ford Crown Victoria of 2009.
One other memory I have of the 1960 car was its turtle-like appearance and turtle-like acceleration. It weighed around 3600 pounds and was likely powered by the 312-cubic inch V8. Dad bought it in "Aztec Turquoise" (see sample below)
The best photo I can find is a two-door model (the four door looked very similar) in a wretched brown. Here's the picture:
Note that there were two "bulls eye" ornaments on the front left and right fenders ... it made for better aiming when hunting pedestrians. (Just kidding)
The 1960 Monterey was traded in for one of my all-time favorite cars: a 1965 Monterey 4-door sedan in a gorgeous "Midnight Blue" with a "Breezeway" rear window. The "Midnight Blue" looked almost black at night but glistened with some sparkles during the day time.
This was before the days of stereo radio (except on Cadillacs and Lincolns or other high-ticket cars). But Dad popped for front and rear speakers ... which coupled with the Breezeway rear window made for a great cruising sound system. The Breezeway model is in the middle photo below
The '65 version was also a substantial step up in terms of engine capacity as it had (as a standard powerplant) the 390-cubic inch V8. The Monterey model was the base model but I like its looks better than the Montclair or Park Lane as it had less chrome on the sides.
Dad bought at least two more Mercuries after that -- maybe more. But by then I had my own car and didn't drive either very much. There was a 1969 Mercury ... our first car with air conditioning that was a sorta-yellow with a sorta-green vinyl top (I think).
And his last Mercury was a black one if I recall correctly. I do remember that he bought it before moving to Arizona ... but once there, Dad felt the car was too dark and gathered too much heat. So, he had a white vinyl roof put on to deflect the sun ... which transformed it to a "look-alike" squad car. He joked/complained about how folks would hit the brakes when he came up behind him.
Dad's last car was an Oldsmobile ... and he passed away a few years later. Now Mercury joins him ... I know one guy who's in heaven and probably still driving a Mercury. RIP Mercury ... and Dad.
The Ford Motor Company said Wednesday that it would stop production of Mercury vehicles in the fourth quarter and discontinue the brand. (NY Times 06/02/2010)
My dad was a "Mercury Man." His first car was a 1950 Mercury that he bought from his uncle. It was a four-door classic black sedan. I remember vividly that it had a stick shift, a starter button on the dash and that I moved it forward at the tender age of four or five by pressing said button while it was in gear.
I also remember sitting in the spacious back seat (upholstered in an itchy-scratchy grey velour) on the way home Sunday nights and listening to Mom and Dad talking while listening to Howard Miller on WIND radio.
Here's a pretty good picture of how the car looked and its interior. I honestly didn't recall the "suicide doors" .... cool!
The '50 Mercury died a noble death while saving the life of my dad. A family emergency required Dad drive from our suburban home into Chicago. He took a curve at too great a speed, rolled the car (way before the days of seat belts) and walked away unscathed.
The replacement for the staid 1950 Mercury was a svelte and sporty 1957 Mercury in two-tone Red and White with black and white houndstooth interior. Unfortunately it was more svelte than dependable. At least three times we tried to drive from our home in Lombard down to New Salem. Each time we had a break-down and failed to make the trip until we replaced the car with a more dependable Mercury.
The two-tone color scheme is shown in the top of the photo to the side. Ironically, my Dad really, really wanted the blue-and-white model but couldn't wait for it to be delivered and took the red-and-white one as it was in stock at our local dealer.And, as luck would have it, our local dealer was within a mile of our home. While Barta-Gorski Mercury was a relatively small dealer, it did deal fairly with Dad and vice versa. He bought a total of three cars from them and would have bought the last two Mercuries there if they'd stayed in business.
Due to wanting more dependable transportation, Dad traded in the 1957 Mercury for a 1960 model. It was one huge car. I learned how to drive and got my license in the 1960 Monterey ... even passed the parallel parking portion of the test despite its daunting size. (In comparison, the 1960 model was 7 inches longer and 3 inches wider than the Ford Crown Victoria of 2009.
One other memory I have of the 1960 car was its turtle-like appearance and turtle-like acceleration. It weighed around 3600 pounds and was likely powered by the 312-cubic inch V8. Dad bought it in "Aztec Turquoise" (see sample below)
Note that there were two "bulls eye" ornaments on the front left and right fenders ... it made for better aiming when hunting pedestrians. (Just kidding)
The 1960 Monterey was traded in for one of my all-time favorite cars: a 1965 Monterey 4-door sedan in a gorgeous "Midnight Blue" with a "Breezeway" rear window. The "Midnight Blue" looked almost black at night but glistened with some sparkles during the day time.
This was before the days of stereo radio (except on Cadillacs and Lincolns or other high-ticket cars). But Dad popped for front and rear speakers ... which coupled with the Breezeway rear window made for a great cruising sound system. The Breezeway model is in the middle photo below
The '65 version was also a substantial step up in terms of engine capacity as it had (as a standard powerplant) the 390-cubic inch V8. The Monterey model was the base model but I like its looks better than the Montclair or Park Lane as it had less chrome on the sides.
Dad bought at least two more Mercuries after that -- maybe more. But by then I had my own car and didn't drive either very much. There was a 1969 Mercury ... our first car with air conditioning that was a sorta-yellow with a sorta-green vinyl top (I think).
And his last Mercury was a black one if I recall correctly. I do remember that he bought it before moving to Arizona ... but once there, Dad felt the car was too dark and gathered too much heat. So, he had a white vinyl roof put on to deflect the sun ... which transformed it to a "look-alike" squad car. He joked/complained about how folks would hit the brakes when he came up behind him.
Dad's last car was an Oldsmobile ... and he passed away a few years later. Now Mercury joins him ... I know one guy who's in heaven and probably still driving a Mercury. RIP Mercury ... and Dad.
Tuesday, April 20, 2010
Politics then and now...
I stumbled across this story while wandering around stories from Minnesota's political past. Given the tone of today's campaigns -- and the campaign funds that both parties raise -- it's a story of a bygone political era.
Background: I'd hope that nobody needs an explanation of who Hubert Humphrey was. But I realize that he was a political figure over 20 years ago so there's a whole generation or two who may not be familiar with him. Hubert Horatio Humphrey was one of the most charismatic people I've met. He was a US Senator from Minnesota, ran for the Democratic nomination in 1960 and narrowly lost to JFK. After Kennedy's assassination, he became Lyndon Johnson's VP and in 1968 the Democratic candidate for President.
In that capacity he became an object of derision -- which was unfortunate because we spurned a really good man in our opposition to the Viet Nam war and that era's policies. He was later voted back to the US Senate and passed away while in office.
Val Bjornson was a well regarded Minnesota Republican who was elected and re-elected State Treasurer and served for 22 years during the 1950s and into the mid-1970s. He ran against Hubert Humphrey in 1954 when this story came about from a local reporter in Worthington, MN:
"I was thinking lately of how I embarrassed Val Bjornson and Hubert Humphrey. It was 1954. Hubert Humphrey was the DFL nominee for re-election to the U.S. Senate and Bjornson was the Republican challenger. They both came to Worthington for Turkey Day.
In those years, when we (Daily Globers) were assigned to cover a visiting politician, we were expected to follow like puppies on the heels of their masters. I was assigned to Hubert Humphrey. If Hubert stopped somewhere for an ice cream cone, it was for me to know the flavor of ice cream he ordered.
It was late in the afternoon. HHH set out somewhat mysteriously from the Daily Globe. He turned at the corner of 11th and Fourth and started toward 10th Street. I followed. A minute or two later, Val Bjornson turned off 10th and walked along the side of what now is the Cow’s Outside, directly toward Humphrey.
Neither candidate appreciated immediately who I was, or what I was doing. They were slightly embarrassed — bitter rivals — to be seen talking together, cordially.
I caught their secret conversation. Want to know what it was?
Humphrey: You ready to leave?
Bjornson: Any time you’re ready.
The two candidates had come to Worthington in the same car. Neither had a great wad of money. Traveling together was one way to save dollars. That’s how politics was in those days." (Source: http://www.dglobe.com/event/article/id/7666/)
There's something really appealing to me about two guys who campaigned against each other but could share a car ride of several hours. I doubt we'll have a similar story about the 2010 and 2012 elections in 60 years.
Background: I'd hope that nobody needs an explanation of who Hubert Humphrey was. But I realize that he was a political figure over 20 years ago so there's a whole generation or two who may not be familiar with him. Hubert Horatio Humphrey was one of the most charismatic people I've met. He was a US Senator from Minnesota, ran for the Democratic nomination in 1960 and narrowly lost to JFK. After Kennedy's assassination, he became Lyndon Johnson's VP and in 1968 the Democratic candidate for President.
In that capacity he became an object of derision -- which was unfortunate because we spurned a really good man in our opposition to the Viet Nam war and that era's policies. He was later voted back to the US Senate and passed away while in office.
Val Bjornson was a well regarded Minnesota Republican who was elected and re-elected State Treasurer and served for 22 years during the 1950s and into the mid-1970s. He ran against Hubert Humphrey in 1954 when this story came about from a local reporter in Worthington, MN:
"I was thinking lately of how I embarrassed Val Bjornson and Hubert Humphrey. It was 1954. Hubert Humphrey was the DFL nominee for re-election to the U.S. Senate and Bjornson was the Republican challenger. They both came to Worthington for Turkey Day.
In those years, when we (Daily Globers) were assigned to cover a visiting politician, we were expected to follow like puppies on the heels of their masters. I was assigned to Hubert Humphrey. If Hubert stopped somewhere for an ice cream cone, it was for me to know the flavor of ice cream he ordered.
It was late in the afternoon. HHH set out somewhat mysteriously from the Daily Globe. He turned at the corner of 11th and Fourth and started toward 10th Street. I followed. A minute or two later, Val Bjornson turned off 10th and walked along the side of what now is the Cow’s Outside, directly toward Humphrey.
Neither candidate appreciated immediately who I was, or what I was doing. They were slightly embarrassed — bitter rivals — to be seen talking together, cordially.
I caught their secret conversation. Want to know what it was?
Humphrey: You ready to leave?
Bjornson: Any time you’re ready.
The two candidates had come to Worthington in the same car. Neither had a great wad of money. Traveling together was one way to save dollars. That’s how politics was in those days." (Source: http://www.dglobe.com/event/article/id/7666/)
There's something really appealing to me about two guys who campaigned against each other but could share a car ride of several hours. I doubt we'll have a similar story about the 2010 and 2012 elections in 60 years.
Thursday, April 01, 2010
Uh, oh. Michele Bachmann secretly BFF of Nancy Pelosi
Psst, Michele. 'member when you were tellin' folks not to fill out the census? Here, I thought it was just another one of your goofy "black helicopter" moments where you see conspiracies under every rock and behind every bush.
Little did I realize you were a closet Pelosi supporter! How 'bout that?!?
From a column in The Red State: by Rep. Patrick McHenry (R-NC)
It's a good thing I'm not a petty person who might quarrel with the order of Rep. McHenry's priorities (seems to me American patriotism outranks the importance of one's partisan powers). At least Rep. McHenry understands and supports what we've been saying since Michele spoke out against the census.
And here's the double-scoop of irony: Minnesota may lose one of its eight current Congressional districts if the count isn't accurate. And the cherry on top: Bachmann's district is one of the least rationally devised districts in the state. Many think it's likely not to survive the redistricting if Minnesota goes from eight to seven districts.
Little did I realize you were a closet Pelosi supporter! How 'bout that?!?
From a column in The Red State: by Rep. Patrick McHenry (R-NC)
"I’m worried about this year’s census ... what worries me is blatant misinformation coming from otherwise well-meaning conservatives. They are trying to do the right thing, but instead they are helping big government liberals by discouraging fellow conservatives from filling out their census forms.
"Early census returns are showing that conservatives have been measurably less likely than liberals to return their census forms. A recent article in the Houston Chronicle points out that conservative Texas is way behind the national average in returning census forms and some of the lowest rates are in Texas’ most conservative counties.
"Few things make will make Nancy Pelosi happier than large numbers of conservatives failing to respond to the census. If we do not respond, we will not be counted and if we are not counted, then we effectively will not exist. That would reduce conservatives’ power in elections, allow Democrats to draw more favorable congressional boundaries and help put more tax-hiking politicians in office.
"Boycotting the census also offends me as an American patriot. Our society spends too much time talking about what government owes us; and not enough on the duties of citizenship and the hard work required to keep our freedom. Filling out the census is one of the few things our Constitution specifically asks of U.S. citizens and it is our duty as Americans to take that responsibility seriously."
It's a good thing I'm not a petty person who might quarrel with the order of Rep. McHenry's priorities (seems to me American patriotism outranks the importance of one's partisan powers). At least Rep. McHenry understands and supports what we've been saying since Michele spoke out against the census.
And here's the double-scoop of irony: Minnesota may lose one of its eight current Congressional districts if the count isn't accurate. And the cherry on top: Bachmann's district is one of the least rationally devised districts in the state. Many think it's likely not to survive the redistricting if Minnesota goes from eight to seven districts.
Ah, the Seduction of Plastic
The Graduate is a benchmark film for my generation ... and many of us remember the "career advice" given to Dustin Hoffman early in the movie: "plastics." Many of us may blame the overuse of credit on some subliminal effect exercised in this movie.
Yesterday, I got a call from Alec's Work Coordinator that he was showing folks at Merrick his new Credit Card and they asked if I knew about it. I sure didn't.
Checked my credit cards and none were missing. (Alec sometimes "borrows" things.) So I called Merrick back and talked to Alec, asking that he show the card to us when he got home.
Turns out that he'd been mailed a "debit" card and (from the cover letter as well as the brochures that accompanied it) it was unsolicited.
("Unsolicited" is a a major point. Alec loves to enroll in all those programs that he sees on TV or in the paper or magazines for "more information." For a while, he was deluged with mailings for "Credit Counseling" as he thought it meant he'd be able to get a credit card. Then we've periodically gotten calls from various "brick and mortar" colleges as well as "training for a new career in ....." institutes and a few Internet colleges. Plus, we will get calls from a recruiting Sargeant or Chief for all branches of the services.
(We've banned him from doing any signups so I was a bit worried he'd decided to ignore our request.)
So, in this early springtime, the seduction of plastic had its way with our son but was thwarted by his ever-vigilant staff and parents. Thank goodness he doesn't know that Mrs Robinson is the really seductive one and hasn't experimented with any of her sisters!
The sad thing in all this is that Alec sees everyone using plastic. The fact that you have to have money in the account or pay the bill hasn't connected. Maybe we need a few commercials showing that aspect!
Yesterday, I got a call from Alec's Work Coordinator that he was showing folks at Merrick his new Credit Card and they asked if I knew about it. I sure didn't.
Checked my credit cards and none were missing. (Alec sometimes "borrows" things.) So I called Merrick back and talked to Alec, asking that he show the card to us when he got home.
Turns out that he'd been mailed a "debit" card and (from the cover letter as well as the brochures that accompanied it) it was unsolicited.
("Unsolicited" is a a major point. Alec loves to enroll in all those programs that he sees on TV or in the paper or magazines for "more information." For a while, he was deluged with mailings for "Credit Counseling" as he thought it meant he'd be able to get a credit card. Then we've periodically gotten calls from various "brick and mortar" colleges as well as "training for a new career in ....." institutes and a few Internet colleges. Plus, we will get calls from a recruiting Sargeant or Chief for all branches of the services.
(We've banned him from doing any signups so I was a bit worried he'd decided to ignore our request.)
So, in this early springtime, the seduction of plastic had its way with our son but was thwarted by his ever-vigilant staff and parents. Thank goodness he doesn't know that Mrs Robinson is the really seductive one and hasn't experimented with any of her sisters!
The sad thing in all this is that Alec sees everyone using plastic. The fact that you have to have money in the account or pay the bill hasn't connected. Maybe we need a few commercials showing that aspect!
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