My story: a very frank and personal introduction [long]

Miscellaneous and Personal Stuff I Must Share
1

I keep meaning to out myself and tell my story here. I’ve just been waiting for the right time.

The reason I think it’s worth telling here, on the SDMB, is just how damned often somebody’s started a thread or posted a comment that hit on a topic that seems to have some sort of nexus TO my story.

Relevant themes
  • Neighbors from hell
  • Right to die
  • Homeowners Associations
  • Gun culture/I bought a gun because I was afraid of my neighbors
  • Militarization of law enforcement agencies
  • Prosecutorial overreach
  • Tribalism, Confirmation Bias, and Groupthink
  • “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”
  • Invisible disabilities
    • Everybody – individual and agency – either:
      • Believed that I’m disabled and the neighbors were hurting me … and did nothing, or
      • Did NOT believe that I’m disabled and that the neighbors were hurting me … and did nothing
      • Which of those would be okay?

So let me link to my tale of woe … in all its glory:

Here’s my story. It’s sad but true

I had to abandon updates when it became clear to me that the cardiac problems that I was experiencing were more than “just atrial fibrillation” as a handful of reputable cardiologists assured me. For the second time in my life, I had to play doctor, putting all of my energy into trying to solve a complex medical puzzle, often while being dismissed and/or gaslighted by the medical profession.

After trips to Brigham and Women’s (Harvard), Johns Hopkins, and the Minnesota Mayo, I’d gather more info, do more research, and refine my hypothesis. I learned to trust the tests a lot more than I trusted the people whose job it was to interpret them.

That’s how I, and – eventually – some of the world’s best heart failure specialists, reached the precise diagnosis of Non-Tropical Eosinophilic Endomyocardial Fibrosis, a rare subtype of a very rare type of heart failure, Restrictive Cardiomyopathy. In essence, my whole heart had turned into scar tissue.

Only ‘treatment’ option? A heart transplant. I don’t qualify. Not even close. Too many medication reactions to endure the ridiculous medication regimen associated with the transplant.

To a person, I’ve enjoyed and do enjoy your posts, even those Dopers who I’ve participated in pitting. I promise that same feeling extends to you. Collectively, you all have created something special here – the individual contributors in conjunction with a truly exceptional bunch of moderators. Kudos to the whole lot of you and those who came before.

It is precisely because of who all of you, collectively, are that I have toyed with the idea of sharing this story with you. I welcome your comments, but … please … be gentle with me. I’ve had every flavor of victim blaming you could possibly imagine. It’s decidedly unhelpful at this point. I can’t change the past, nor – apparently – alter my current trajectory.

I’ve had one ‘code’ that I’ve lived by, to the best of my ability, for nearly a half-century: don’t hurt people unnecessarily. I think those who’ve known me would say I’ve done at least “B” or “B+” work on that goal.

Colorado (where I live) is a “Medical Assistance In Dying” (“MAID”) state. In November – when my car spun out on black ice – I was just coming from a visit to my cardiologist from whom I had formally requested MAID. The doctor must certify that you have six or fewer months to live. Because of the profound rarity of my condition – particularly for those who do NOT live in impoverished parts of Equatorial Africa (I do not), Legal would not let him sign the papers.

My doctor is a good man with health problems of his own. He’s no kid. His advice to me – verbatim – was to “find the tallest building that I can and jump off of it.”

Noted.

The five year mortality rate – near as anybody can figure – is about 80% for my condition. I recently passed year nine since the DRESS Syndrome (adverse drug reaction) that triggered the cardiac issues. The lights are slowly but inexorably getting dimmer.

I went from a life of activity, exercise, and adventure to one where I have to plan my trips up the stairs, more often than not using hands and feet to surmount those stairs. I’ve figured out how NOT to pass out anymore, but I had to pass out a few dozen times to really get the hang of it. My wife can patch drywall. I did NOT know that!

I still look … pretty okay. That’s what damned me to this fate at so many points along the journey: I, apparently, don’t “look disabled.”

Whatever that means.

I guess it means I don’t use a wheelchair. Right?

I’m going to be around this MB until I can’t be. I’m going to be around, broadly, until I come up with a better option. I qualify for assisted suicide in a few European countries, but that’s not the kind of travel I enjoy :wink: Plus, there’s friends, family, loved ones to be troubled and transported. It’s a whole big thing, y’know?

So that’s me. It’s a pleasure to know each and every one of you.

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Thanks for telling your story. It reminds me of the epitaph on a Key West tombstone: “I told you I was sick”. Boy, there’s nothing that can fuck up a life (or the end of a life) like bureaucracy and those who work in it. Oregon has a right to die law, and it was sort of a comfort to know it was there. MN, where we now live, does not. For the first time in a very long time, the state legislature is now Democrat in both houses and the governor’s office. We plan on lobbying our rep to introduce a death-with-dignity bill. Not that it won’t have the same problems that you’re facing, of course, and probably stiff opposition from the religious sector.

I wish you luck on the rest of your journey.

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You remind me of that dog named “Lucky” – you probably know the story.

Re heart transplant: a man I dated years ago had one in 1989 when he was 69. He lived for 13 more years until he died of cancer. He was a retired Air Force Colonel and had been a WWII fighter pilot.

My late husband had a kidney transplant in 1992 when he was 59. When he died in 2000 of other causes, the kidney was still working fine. There is some post-transplant maintenance, but one gets used to very quickly.

And before you say it, yes, that does make me The Transplant Queen.

Just supplying grist for your rumination mill.

4

Fuck.

I’ve no more words than that right now.

I’m sure this isn’t helpful. But fuck, man. You’re a really good person.

Fuck.

ETA: I’m a lawyer. Maybe I can give you my heart. We all know I don’t use it.

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I’m sorry you’re dealing with this: the condition, and everyone who is making it harder.

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Well, dang. Thank you for sharing your story, David.

May your days have joy and laughter, and may you be able to continue to be a part of this place for a while longer.

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Damn. A good friend died of alcoholic cardiomyopathy. He was diagnosed when he started coughing and experiencing shortness of breath. They made a definitive diagnosis and a few weeks later he did not wake up.

Then, two years ago our 12 year old German Shepherd Kali (who hadn’t experienced a sick day in her life) walked away from her food bowl half way through her dinner. Totally unlike her, we knew something was wrong. She collapsed and died en-route to the emergency veterinarian. A postmortem exam showed dilated cardiomyopathy.

I hope you remain as happy as possible for as long as possible.

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I never heard that one. Love it!

Many thanks for the kind words. Yeah. The US view on end-of-life has always eluded my understanding. I watched a hospice video where a CEO of a MN health care system said that he wanted to grow hospice, despite his CFO telling him how much end-of-life ICU money it would cost them.

He said the quiet part out loud.

Many thanks, Thelma. I’m not the obstacle on the transplant thing. Demand for hearts far outstrips supply, so they’re understandably very selective. I don’t qualify because my history of drug reactions makes me a poor candidate for the required drug regimen.

I’m a bad bet :wink:

It’s actually what I probably say to myself most often – the “fuck, man” part, that is :slight_smile:

Many thanks for the kind words. Truly. And half my family and friends went to law school. Most eventually stopped practicing and got jobs that really don’t make use of their law degrees. I have too much experience with doctors and lawyers – more than a reasonable person should have to have, but … a real fondness for both professions.

Thank you so much. I’ve long held fast to this saying: “It’s okay if you don’t help me, but don’t hurt me.” I’ve also learned to love the maxim, “Hurt people … hurt people.”

Amen to both.

Thanks so much. You’re one of the many Dopers to whom I could point as just an unmitigated positive in your contributions here.

Awww, Man. I’m so sorry. That’s Sammy, my yellow lab, in my avatar. Big old dog lover, too. That canine dilated cardiomyopathy (DCM) thing had/has a lot of us worried. Is it diet-related? Grain? Grain-free? Purine? Am I doing the right thing?

It’s maddening. I had to leave it alone, do the best I can by my good boy, and hope for the best. I’m sorry you didn’t get the best … at least at the end. I’m glad you had a dozen good years.

I’m also sorry that you had a close friend die from something similar. From where I sit, I do find a wee bit of solace in the idea that neither lingered interminably. It’s a tough life for those who do.

“When I die, I want to die like my grandfather who died peacefully in his sleep. Not screaming like all the passengers in his car.”

― Will Rogers

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In 2020 when the pandemic was getting kicked off, the board had moved to a different hosting platform, and the George Floyd protests were exploding, there were a number of posters who joined. Some were downright awful, and some were great. You and @BippityBoppityBoo stand out in my memory as fantastic additions to the board from that time. Here’s hoping you can stick around for a long time to come.

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Gaah.

I am so sorry that you’re dealing with this condition at all. And I’m also sorry that you’re dealing with this particular, entirely human-caused, complication of it.

We have a medical profession focused on keeping people alive; and that’s very often a good thing. But we also badly need a portion of it focused on helping people die. It’s not something we can just always stop from happening; and current hospice setups, while a whole lot better than nothing, are often so restricted as to be useless for many.

May you have as much good time remaining as possible. By however you, personally, define “good time”.

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David, that really does bite the big one. Every day, do what you can then stop to rest. Just keep taking steps forward for however long you can. And yes, be here with us for as long as you need us.

My friend’s father died of this and it really is a bear. He lasted two years. His name came up on the transplant list shortly after he passed. Life can be a bitch that way, as you already know. That was back in the mid 80s. Sounds like progress has not been made.

If you haven’t already, talk to a lawyer or whomever to tie up loose ends. Think about what music you want at your funeral/memorial/celebration of your life, maybe pick a poem to be read. This is something that I regret that my mother did not do. Figure out what you would prefer to happen to your body. Figure out your bucket list and do what you can with it.

Oh heck, you know all this stuff. And you know we care about you. Be here while you can. Hugs.

12

Well, dang. The misspent youth really bites you in the … :unicorn:* don’t it?

* There was no donkey emoji, so I substituted a unicorn.

13

Well, I’ll miss you, so stick around. Getting older with ailments that cannot be cured kinda sucks.

14

Well first off, sorry you are dealing with this. As we are all going to die it would have been something. On the good side you have people who obviously care about you and people here who will speak of you long after you’re gone. Either kindly or otherwise. I think dying without anyone noticing or caring is the real tragedy in life.

15

Damn. I’m really sorry to learn this. You’ve always struck me as a good guy, very rational and even-keeled. However the future unfolds for you, I hope it’s smooth sailing, with little pain and no fear.

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DavidNRockies, this all seems so unfair. I hope you find a way to finish out your life on terms that are acceptable to you, given the limitations your body has dealt you – that, at least, didn’t have to be tragic. I hope they stop messing with you.

Not that this is going to prevail, but, people who can write posts like yours should not get short changed on life.

17

Sorry to hear about such an infuriating roadblock. I’m at a loss to understand why the rarity of a disease mean that lawyers should be substituting their own judgment for that of a medical professional. FWIW, my mom died a medically-assisted death in Colorado several years ago and didn’t seem to have any trouble getting authorization, despite her disease being extremely rare.

If you haven’t already done so, I’d suggest getting in touch with these people:

They are fully supportive of medical aid in dying, and they may be able to help you get what you are looking for. Note that in addition to resources for patients, they also have resources that may be able to help whatever doctor you’re working with:

https://compassionandchoices.org/d2d/

I wish you success in finding whatever fulfillment you can in your remaining days and months, and in mitigating whatever suffering your disease might try to inflict upon you.

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No words are adequate to express myself here. I’ve enjoyed your posts, and I wish you well for a long time yet.

Yeah, doctors. Unless you pound them over the head about something, they aren’t going to look close enough to catch what ails you.

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One quick clarification: my wife and I moved into that Northern Colorado house in 2009. I was arrested and forced to vacate my house in 2012. That part, those neighbors, that misery … is long gone. The drug reaction happened in 12/2013. The first cardiac symptoms appeared in 9/2014. All of my stuff is still in storage, two hours from me. I cannot even get to it.

I am still living with my wife – in the house that she bought while I was gone – with only a suitcase full of clothes in a pile in a corner of a bedroom.

I am … in a big way … displaced.

Well, that’s just about the nicest thing anybody’s said to me in a very long time. My humble thanks. Seems you’re a bit of an elder statesman 'round these parts, so it carries just a bit of extra gravitas.

I’m a big BBB fan, too :wink:

Also worth mentioning: like many of us – particularly anybody wrestling with cognitive dysfunction – the Dopers who stick out in my mind doesn’t correlate with how often they post or the quality of their posts. I simply remember … what I remember.

Meaning: like an Academy Award winner … I don’t mean to leave anybody out by paying particular attention to another.

Thanks so much. You may have noticed that you got my attention when you had that Hypertrophic Cardiomyopathy diagnosis and surgery. I’m sorry that you set a foot into a corner in my world. I’m glad you’re not staying :slight_smile:

If you remember, I met my wife while stopping off for a beer at an old friend’s restaurant in Skaneateles. There’s a special place in my heart for CNY, and – if memory serves – you’re up there somewhere.

I also appreciate all of your contributions to this MB.

Wow. Aside from extending my sincere thanks for your kind words, RCM really is a very rare diagnosis, so to know somebody who had it is pretty unusual. Yeah. I picked a bad thing to get. My sincere thanks to you.

Oh, Amen. I got it all tied up with a neat little bow. Thanks for that reminder. In one very real sense, we shouldn’t wait to get a grave medical diagnosis to “get our affairs in order,” but we so often do.

On advice of counsel, I am invoking my 5th Amendment right not to answer that question :wink:

[Hey. that really IS somewhat satisfying!]

Amen. And my thanks again. One of the things that stands out most for me about your contributions is … your house. I meant exactly what I said when I told you that your dream was an excellent match for mine. I just love what you created.

You’ll also likely appreciate that one of the losses I grieve the most about this whole thing is … my (former) house. As a disabled, visually-impaired guy, I put heart and soul into specc’ing our semi-custom house to be built in Colorado. I had no change orders. I regretted nothing. I got what I hoped for and I loved it. Many things weren’t glitz and glamour but bones and systems. It was extremely comfortable and energy efficient. It just … was in the wrong place.

My thanks for your kind words and that profound sentiment. It never used to occur to me, but certainly has of late. The medical decline has – on top of what COVID did – pushed social isolation. I do think about my many friends, many activities, and the impermanence of any mark I may have made on this world or people in it.

But it is what it is :wink:

My sincere thanks, and may I only return the compliment. I’ve decided that “wisdom” and “even-keel” are often nothing more than a manifestation of exhaustion <grin>.

My sincere thanks, Napier. Yours is another ID that stands out in a positive way.

I long ago had to make peace with the idea that it isn’t a Just World. Bad things happen to good people, and good things happen to bad people, all the time. The trick is to keep getting out of bed regardless.

@Machine_Elf : To you, I owe more focused time. I did recall that you had a story of MAD/MAID. I looked for it this morning and found it. I need to read it fully when I get a bit more coherent. Much as it’s rare to encounter anybody with any familiarity with restrictive cardiomyopathy, it’s awfully rare to encounter somebody with your informed, and appropriately complex, experience and perspective with end-of-life decisions and MAD/MAID.

I’m aware of Compassion and Choices, but thanks for the reminder. I just looked at a Physician Certification form and found this language:

Pursuant to Section 25-48-102(12), C.R.S., “Prognosis of six months for less” means a prognosis resulting from a terminal illness that the illness will, within reasonable medical judgment, result in death within six months and which has been medically confirmed."

I knew there was a good chance I’d be refused. One antiquated notion that stymied me in this medical odyssey was the idea that heart failure always meant a reduced ejection fraction (EF) and edema – retaining fluids, swelling.

Both are wrong. Both may be very common, but they are absolutely not essential, even to die of heart failure.

But both represent a hurdle that the HC system my cardiologist works for hang their hats on.

I will reach out to Compassion and Choices, but I suspect – at least with my cardiologist – there will be nothing that he can/will do to override legal. CO also requires a second physician sign on. That’s a separate but equal challenge.

Once I get through your family story, I may PM you … if that’s okay.

So many sincere thanks. Yours is yet another screen name that invokes positive recollections for me.

There is a very important and useful cliché in medicine: “When you hear hooves, think horses, not zebras.”

But there are zebras. There are even unicorns (Raises hand, tags @ThelmaLou ). Thinking horses shouldn’t be at the expense of failing to recognize actual zebras and unicorns, particularly when the patient is pointing to his stripes or horn.

Side note: while advocating as vigorously as I could on my own behalf, with a Denver-based, well-known cardiologist, I had actually purchased, and was wearing, a zebra shirt (all striped in the right color scheme). He noted it, derisively, in my chart.

There are no end of people with rare conditions who chase the diagnosis for years. There are, I’m sure, an inconceivable number beyond that who aren’t in a position to quarterback such a Homeric journey against such a formidable system, even if they can finance the fight.

One more general note: one thing I admire most about the SDMB, and how it’s managed, is that – overwhelmingly – even when a Doper is pitted – there’s a basic chivalry (I checked: it can be a gender-neutral word) to it. It’s far more often a battle of wits than a shit-show or a street fight.

The world would be a better place if there were lines that we all agreed not to cross [ETA: and maybe it doesn’t need to be anything other than “Don’t be a jerk”].

Cheers!

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Please do; I will look forward to hearing from you.