ELDER MUSIC: Classical - The Usual Suspects
A Change Of Scene

Good god, A New Diagnosis

While I was celebrating the second anniversary of my Whipple surgery last week, I was handed an additional diagnosis: COPD (chronic obstructive pulmonary disease) stage 4, the most severe.

I first noticed a shortness of breath last January and it has worsened since then. I had to wait a long time to see a pulmonologist and got in last week only because the doctor had a cancellation.

Because symptoms sometimes mimic old age, COPD often goes undiagnosed until it has advanced to later stages. With diligent application of certain medications and treatments, quality of life can be maintained and extended but I doubt a marathon – or even a hop, skip and jump - is in my future.

COPD is not curable but medications can stop its progression.

One of my other physicians had prescribed an inhaler that helped ease my breathing – sort of. The pulmonologist gave me a different inhaler and as I write this on Sunday, having used it morning and evening since Thursday, I'm already functioning much better.

I can now change clothes without stopping to catch my breath. Ditto walking to the car and if I take it slowly, I can even do small inclines without losing my breath. Not bad for three days of a medication, and I'm told the effect is cumulative. Hurray.

There will be some more tests and if indicated, there may be additional or different medications. My mind seems to have cleared of some fuzziness I'd had so I'm thinking better. Well, I think so, anyway.

As part of a longer message on Friday's post, Melinda left this:

”Ronni celebrate!! You are still here when some of the experts gave you a time frame. Life is random and the universe does with us as it pleases...I say it again: it is all random and when they turn the page on The Big Book and your name is on it, that will be goodbye.”

Although I tend to say it less elegantly (“shit happens”), Melinda and I are singing the same song in this regard. If there is a mind behind the universe, he or she is keeping reasons from the rest of us. We can have no effect on when our page is turned.

At least I will have some notice – when doctors determine I have fewer than six months to live, I can begin the procedure for physician-assisted death.

So, as Melinda advises, in my quiet way I am celebrating. Having two major diseases is hardly ideal but I'm upright when I want to be and if it doesn't involve speed, I can do most of what I need to do.

[IMPORTANT NOTE: Please do not ask the name of the inhaler I am using. I never reveal prescription drug information. Also, do not recommend or name any treatment for COPD including stories of people who cured it by eating three raw onions (or something else weird) a day. Treatment is properly left in the realm of trained physicians and not a general-interest blog.]



Comments

So glad to hear it's treatable and you've gotten some relief.

Glad you finally got to see the correct specialist and have a diagnosis with treatment to help, but it emphasizes again the need for more doctors. Why there aren't more efforts to facilitate training without huge debt loads and such rigorous hours is so mind boggling.

Sad and happy for you at the same time. We know you will make the best of another challenge, but wish it wasn't so difficult.

In the immortal words of Roseanne Roseannadanna, "It’s always something — if it ain’t one thing, it’s another."
You are my hero and role model for grace and determination in the most challenging circumstances.

Well, I for one am glad it's COPD rather than a metastasis of the cancer. I know it's not good but not as bad as it could be!

This piling-on of illnesses as one gets older is the real elder abuse. I always wonder how much emphasis is placed on actually finding cures for diseases that primarily affect older people. They seem to concentrate on the short term solution of alleviating symptoms.

Another diagnosis?! Geez. It's not a competition, Ronni! :) I'm thinking of you and glad to hear the medication seemed to have a speedy and positive impact. Hugs.

A Willie Nelson bumper sticker I once read while living Texas: "Shit happens . . ." And as we later find it does!

Wishing you a continued 'safe and harmless journey' and all the best.

Just one more thing! Ugh! Glad (and not surprised) that you are rolling with it.

I appreciate your request, as you've done before, to not send recommendations, treatments. But I do want to point out that your "general-interest blog" was once upon a time just that to me. However, over the last 2 years it has turned into something much more for me. Even though I will never meet you, I consider you a dear friend who I care deeply for. Who can believe that such connections can be made this way, but they have. I don't often comment, but I always read your words and they touch me, inform me, make me laugh, make me cry, make me care. So...I just wanted to let you know. Thank you for sharing your life. Carol

Ronni, if COPD is going to guide the hand that turns your final page, you may be with us for quite a while. I was diagnosed with COPD 15 years ago. Went on daily inhalers (two different ones) right away and have stayed with them. This winter I got a serious case of flu and was hospitalized for a week. For reasons probably linked to the flu, my blood oxygen readings went way down. When docs released me from the hospital, I was accompanied by a couple of oxygen supply devices and advised to say on oxy 24 hours a day. However, upon doing a followup with the doc after 60 days he said things looked so good I could be tethered to the oxygen only while sleeping at night. I am huffing and puffing a bit more than I was 5 or so years ago, but not very much more. I can perform all the basic functions I need to do to live independently (including driving) at age 83, although more carefully and slowly in several cases..

It seems criminal to me that you --that anybody -- who can't breathe has to wait months to see a pulmonologist. Of course I'm glad that you're getting some relief, but it makes me angry that you had to wait so long.

You do seem to have the ability to swim upstream in the most elegant way.

Nothing like breathing well.

As said above, Ronni, so sorry that you're having to "swim upstream" but you keep on, gal. We all love ya & are pulling for you.

I'm so glad to hear you got some help for your breathing! You'd mentioned it often and I'd assumed it was related to your cancer treatment.

Good Morning Ronni - all any of us have is TODAY - maybe only this hour or this minute. I try to live in it and I am sure you do to. Good luck to us all!

"When I was young my slippers were red, I could kick up my heels right over my head,
Then I was older my slippers were blue, but still I could dance the whole night through.
Now I am old, my slippers are black, I huff to the store and I puff my way back,
Never you laugh, I don't mind at at all, I'd rather be huffing than not puff at all." Pete Seeger

But then, who knows? Nirvana? Heaven? Quantum Physics? I've never heard of someone who "died" who wanted to come back! In fact, some were very disappointed to have been "brought back." Whaddooweknow?"

Anyway, as always, many blessings, Ronni.

Wow! Quite the saga and it continues--a good thing.

This ole guy just can't understand why it took 5 or so months to see a pulmonologist. Ronni, I lived in Mexico for 24 years and when my cardio sent me to a pulmonologist -- it was the next day. Maybe you should have flown to Queretaro, Mexico -- that where my key doctors were since I lived in the smaller community of San Miguel de Allende.

It just puzzles me that it took 5 months for a #4 cancer patient who already does suffer a bit -- 5 months to see a pulmonologist … what's wrong with this story??

Emiel aka Emiliano aka ole guy

Jeez a bit too much in that challenge bucket of yours but your grace and acceptance shine through. We are all rooting for you. I am so glad your meds are working so quickly and providing some ease and comfort to your days.

XO
WWW

Oh, c***! Well, at least they know what it is and it's treatable. But I agree with several other TGB readers: why did it take so long to see a pulmonologist? Seems to me that breathing is a pretty basic function and deserving of more prompt attention.

Ongoing neck/back/shoulder pain aside, I am thanking my lucky stars that I can breathe without difficulty (so far).

So glad there has been a diagnosis and one with a treatment!

Taking so long to see a pulmonologist comments are my experience too. After being recently hospitalized with severe pneumonia which was unresponsive to several antibiotics, I have also been diagnosed with COPD, plus another serious gastro- intestional condition. After 16 days hospitalization, I am also on O2 at home & feel like I am in a constant battle for prescriptions to be placed & filled, specialist appointments scheduled for over a month away & am frustrated by not having 1 person coordinating all medical matters. I am very depressed by too many care providers not giving a damn about vulnerable patients & their needs & consequently not doing their jobs. Of course I've met a few genuinely competent nurses & doctors, but they are few & far between & they receive my sincere gratitude for treatment that should be routine care. Having almost constant supervision by my 2 daughters while hospitalized has been life-saving in at least 2 instances. Everyone NEEDS a patient advocate. Having few health issues in my previous 77 years, I feel totally unprepared in dealing with the present-day healthcare system in the US.

Oh rats! If it isn't one thing then it's another. I keep asking why do bad things happen to good people. I know, I know - the rain falls on the just and the unjust, but too much is falling on you.

There is an editorial in the NYT today by a person who doesn't want to know the time of their death. The comments are all over the map on whether knowing is good or bad. One comment stood out though. It was written by a person who was given 6 months to live by his/her Oncologist and is feeling fine and doing well 5 years later. It made me feel better about your time frame. As it was pointed out, the time given for a terminal ( or, as you call it, one with a predicament) patient is just a compilation of previous patients with the same disease and the time of their death after dignosis. People are all different and I hope you are one of the ones who do not follow the pattern of others and live for many many happy years. Nothing is impossible.

Thankful that you know what this new diagnosis means and what you need to do about it.

Also what Bruce Cooper said.

We elders will keep on keeping on whatever &$$*%# comes our way.

Stay strong, Ronni.

Sending you a big Montreal hug.

Responding to Ann Stock--yes, the present-day health care system! If I hadn't had a daughter who is a nurse, I don't know what I would have done after my hospitalization a few months ago! She nagged--me and the medical folks,
and made herself my proxy.

With the others, I'm appalled that you, Ronni, had to wait so long to see a pulmonologist and get relief for your breathing difficulties!

A hundred years ago, my father was a small town doctor. He made house calls. Yes, it was a simpler time and place. Still. . .

I've had COPD (Gold, also known as stage 1) for years. The steroid inhaler helps...I am still very active and have found COPD just another bump in the road to deal with. You're doing well, Ronni, and I look forward to your future tomes.

I have to say that I felt hugely relieved to learn that you have COPD and it's treatable. I was so worried that your shortness of breath and easy fatigue were cancer related.

((xx))
A gentle squeeze from afar..
yay to your Drs in aiding the abatement of symptoms xxx

What Harold said. I admire you, Ronni.

It sucks, but I guess is better than some other alternatives. Wishing you easy breathing...

I agree with the sentiments of all the posters above. I'm glad you have a diagnosis now, and you will begin to feel much better as the treatment takes hold. Your diagnosis did remind me of something I've discovered through my own breathing difficulties - you mentioned that eating ice cream can be problematic. I have that problem too, although I think it affects my airways moreso than my esophagus. Anyway, because I love ice cream so much, I've learned that drinking a hot beverage along with my ice cream counters the problem. It might be worth a try for you.

An old woman from the country in Virginia once said to me "If you didn't have bad luck, you wouldn't have no luck at all."

I guess it's better to get this diagnosis now than 20 years ago, though.

I'm very sorry to hear this, Ronni, and am sending you hugs and kisses.

I have to agree - so much of life is just plain luck. How you respond is what matters. And you never fail to respond with courage and even humor. I'm in awe.

So glad it is treatable. But I wonder how it could get to Stage 4, considering how many doctors you’ve seen since the symptoms began. Did you tell any of them about your shortness of breath?

I hope you have an advocate for your health care. When you are the patient it gets harder and harder to do it for yourself. I was able to be that person for my husband. Even then it took months to get him a pulmonologist due to shortages of that speciality even in a University medical hospital system. I felt like I had done my job when his primary care physician looked at his chart gave a grunt and said I see he has the best Dr in the system. Still the COPD was way down on the list of what he died of. First was bladder cancer, second was myleodysplastic syndrome (bone marrow cancer), third was diabetes with kidney involvement, then 4th COPD eventually on oxygen. He helped found the Hemlock Society in Wisconsin but wasn’t ready to go he joked he wanted to live to New Years Day for the party. I hope you have hugs and humor to the end.

I really liked the reader comment regarding how little control we have over when our time comes. A friend who took up jogging in his fifties, probably 40 years ago now!, said that his wise physician put it this way. "Exercise is good for you. It likely won’t prolong your life, but you’ll die healthier."
I’m also glad you made the comment about the six month rule for assisted dying. We now have a similar law In Canada, and I am eased to be reminded of that provision.
I’m so pleased you are able to keep entertaining and informing us.

My 85-year old father took advantage of physician-attended medical aid in dying a few weeks ago. He had full mental capacity until the very end. He lost his strength and some other physical abilities in the final week, but he was able to chart the course of his death. Getting a terminal diagnosis is something no one wishes for. I am buoyed by the knowledge that you will be able to die the way you like, when you decide it is time. Until then, try to enjoy as much as you can, Ronni. Much love from San Diego.

Hooray for breathing better!

Ronni, I had been (along with many others here) wondering and worrying what your breathing trouble was all about. I am so glad it has been diagnosed and can be treated (and is not cancer-related). That you have more energy and clarity after just 3 days of medication is very promising. Enjoy each breath.

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