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Old 03-23-2023, 10:28 PM   #41021
stonesfan129 stonesfan129 is offline
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Speaking of expired digital codes, just ran into this with my copy of The Matrix on 4K Blu-ray. I've had the standard Blu-ray for years and though I'd upgrade a couple movies. Kind of crappy but whatever.
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Old Yesterday, 01:12 AM   #41022
Vilya Vilya is offline
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I want to thank all of you that have expressed concern for my situation. I deeply appreciate the kindness that you have shown to me. I hope that I deserve at least half of it.

And no, I do not think that I would make for a good diplomat. My wit, whether it be half or full, has from time to time backfired in spectacular fashion.

I have not been a very good supporter of physical media these last few months. I have only added these to my collection this year:

and

Shameful, I know. Hopefully, the rest of you can make up for my slacking off so badly.

Of those three I have only played Devotion. I recommend it. The story is interesting and it looks and sounds, to borrow from someone here, "fantastic!"

It felt good to talk about actual physical media again. It made me feel like things were sorta kinda maybe normal again.

Here is an update about my situation placed behind spoilers for those who wish to know:

[Show spoiler]Genetic testing has confirmed that I have Hereditary Transthyretin Amyloidosis Cardio Myopathy (hATTR-CM). This is a multi-systemic, progressive, and fatal disease. The specific gene is THR80ALA (formerly known as THR60ALA). This gene is found in people with ancestry from the northwest corner of the Republic Of Ireland.

I had a cardiac MRI done on March 17th and it shows that amyloid fibrils have infiltrated throughout my heart; they're basically everywhere. My ejection fraction is down to 40% (normal is 55-70%). If it falls to 35% or lower my risk of a life threatening cardiac event becomes very high.

hATTR-CM often comes with a normal ejection fraction called "preserved", but when it falls as low as mine it is termed "reduced." hATTR-CM with reduced ejection fraction is a characteristic of late stage disease.

hATTR-CM is a multi-systemic disease. It attacks far more than just the heart. It often infiltrates the autonomic nervous system and it causes peripheral neuropathy. It usually causes a litany of gastro intestinal problems, kidney problems leading to renal failure, and it can even damage the vitreous of the eyes resulting in permanent vision deficits.

I have numerous indications of amyloid infiltration in all of those areas except for my eyes. I see my eye doctor Monday to have my vision evaluated.

Regardless of how far and wide the amyloid infiltration is, the treatment options are the same: astronomically expensive drug therapy or as a last resort heart transplantation.

Without treatment, my prognosis is grim: only a matter of a few months.

There is some good news. Today I was approved to receive the drug Vyndamax (aka Tafamadis), a drug that stabilizes the protein Transthyretin thereby preventing the formation of more amyloid fibrils. This drug has a retail price of $21,987 per month. A courier will be delivering it to me Saturday.

The other drug that I need is Onpattro (aka Patisiran), a gene silencing drug that mostly stops production of Transthyretin. It is administered by IV in a three to four hour long session occurring every three weeks. The problem is that it is not yet FDA approved to treat hATTR-CM; it is an investigational drug and one that costs as much as $677,000 per year. My cardiologist is trying to get this treatment for me under a "compassionate use" application where the costs are covered by the drug manufacturer. I am at the mercy of big Pharma for this one. Insurance does not cover investigational drugs.

Onpattro is FDA approved for ATTR-PN (peripheral neuropathy) and I almost certainly have this condition, too, but more testing is required to confirm it. I have to have a very painful nerve conduction test to make that diagnosis and the referral has been made for me to have it done, but there is a lot of red tape to cut through to get it scheduled.

None of these treatments fix the damage done to the heart already and none exist. There are some drugs in early trials, but we are years away from knowing if they work.

This leaves heart transplants as the only alternative. My cardiologist has said that I may have to be evaluated to see if I am a viable candidate, but it's damn hard to get a new heart and it costs nearly $1.6 million.

As for how I feel, I have very little stamina. I have mild to moderate pain in my back and extremities at all times. I have trouble eating and digesting food. I often become lightheaded and I am a fall risk. It is very hard to get the simplest of things done. Everything takes me at least twice as long as it used to do. It is a great challenge to keep a positive attitude. I don't always succeed.

As much as all of that really, really sucks, I carry on. My inherent stubbornness has proven to be an asset after all. I still enjoy almost everything that I ever did, but just not as often. I am blessed with excellent and selfless family and friends that do all that they can to help me. It is a comfort of inexpressible magnitude to have such loving support.

Thank all of you here in this wonderful forum for caring about me, too. You lift my spirits when I often can not.

Last edited by Vilya; Yesterday at 01:32 AM.
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Old Yesterday, 11:46 AM   #41023
bhampton bhampton is offline
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Today is the 50th Anniversary of one of the best ever media items Pink Floyd's Dark Side of the Moon.

Apple Music has the anniversary remix of the album available for streaming in Dolby ATMOS



As another special event to mark the album's milestone, the Empire State Building in New York City will be illuminated tonight with the special 50th Anniversary prism spectrum artwork to rotate in its mast. The display will kick off at sunset and can be seen throughout New York City, as well as online from the Empire State Building Live Cam (https://esbnyc.com/about/live-cam)

Last edited by bhampton; Yesterday at 11:52 AM.
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Old Yesterday, 12:41 PM   #41024
stonesfan129 stonesfan129 is offline
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I'll be honest, I've been getting more and more stuff through Vudu and Apple. There's so many sales that it's often difficult to pass up. I know the whole 'ownership' thing is a problem for many people, but it's nice because my family and I can share our collection across three homes. Then when there are sales we buy stuff and watch it. No smudged or scratched discs, no expired codes with the disc, no skipping/freezing. There are two big ISPs in my area who I've been using for the last 12 years and I have yet to experience a total internet outage. I also can't see these studios cutting off digital copies any time soon. Just my two cents but I think I'm fine settling for this now.
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Old Yesterday, 01:18 PM   #41025
bhampton bhampton is offline
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I just listened to the Apple Music ATMOS version of Dark Side of the Moon 50th at -14db which is about as loud as I was comfortable listening. I really enjoyed it and recommend it to anyone. It was lovely. Things that stood out were the emotion of Great Gig, the bass presence in Money, the spaciousness of Us and Them.

I should have the disc on Tuesday.

You know, I only have 1 disc of the Rolling Stones and listen to them almost exclusively though Apple Music.


I get that streaming rules when it comes to family sharing. At least Apple's version of family sharing. Movies Anywhere had a sharing system that now has to be closed apparently.

I see buying or collecting online movies about ridiculous as buying a picture of a funko pop figure. Which is a wierd way to put it because I would rather have the picture. I do redeem them though. I won't complain about anything free. I share them with my family.
[Show spoiler]

Last edited by bhampton; Yesterday at 02:15 PM.
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Old Yesterday, 02:14 PM   #41026
Steedeel Steedeel is online now
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Quote:
Originally Posted by Vilya View Post
I want to thank all of you that have expressed concern for my situation. I deeply appreciate the kindness that you have shown to me. I hope that I deserve at least half of it.

And no, I do not think that I would make for a good diplomat. My wit, whether it be half or full, has from time to time backfired in spectacular fashion.

I have not been a very good supporter of physical media these last few months. I have only added these to my collection this year:

and

Shameful, I know. Hopefully, the rest of you can make up for my slacking off so badly.

Of those three I have only played Devotion. I recommend it. The story is interesting and it looks and sounds, to borrow from someone here, "fantastic!"

It felt good to talk about actual physical media again. It made me feel like things were sorta kinda maybe normal again.

Here is an update about my situation placed behind spoilers for those who wish to know:

[Show spoiler]Genetic testing has confirmed that I have Hereditary Transthyretin Amyloidosis Cardio Myopathy (hATTR-CM). This is a multi-systemic, progressive, and fatal disease. The specific gene is THR80ALA (formerly known as THR60ALA). This gene is found in people with ancestry from the northwest corner of the Republic Of Ireland.

I had a cardiac MRI done on March 17th and it shows that amyloid fibrils have infiltrated throughout my heart; they're basically everywhere. My ejection fraction is down to 40% (normal is 55-70%). If it falls to 35% or lower my risk of a life threatening cardiac event becomes very high.

hATTR-CM often comes with a normal ejection fraction called "preserved", but when it falls as low as mine it is termed "reduced." hATTR-CM with reduced ejection fraction is a characteristic of late stage disease.

hATTR-CM is a multi-systemic disease. It attacks far more than just the heart. It often infiltrates the autonomic nervous system and it causes peripheral neuropathy. It usually causes a litany of gastro intestinal problems, kidney problems leading to renal failure, and it can even damage the vitreous of the eyes resulting in permanent vision deficits.

I have numerous indications of amyloid infiltration in all of those areas except for my eyes. I see my eye doctor Monday to have my vision evaluated.

Regardless of how far and wide the amyloid infiltration is, the treatment options are the same: astronomically expensive drug therapy or as a last resort heart transplantation.

Without treatment, my prognosis is grim: only a matter of a few months.

There is some good news. Today I was approved to receive the drug Vyndamax (aka Tafamadis), a drug that stabilizes the protein Transthyretin thereby preventing the formation of more amyloid fibrils. This drug has a retail price of $21,987 per month. A courier will be delivering it to me Saturday.

The other drug that I need is Onpattro (aka Patisiran), a gene silencing drug that mostly stops production of Transthyretin. It is administered by IV in a three to four hour long session occurring every three weeks. The problem is that it is not yet FDA approved to treat hATTR-CM; it is an investigational drug and one that costs as much as $677,000 per year. My cardiologist is trying to get this treatment for me under a "compassionate use" application where the costs are covered by the drug manufacturer. I am at the mercy of big Pharma for this one. Insurance does not cover investigational drugs.

Onpattro is FDA approved for ATTR-PN (peripheral neuropathy) and I almost certainly have this condition, too, but more testing is required to confirm it. I have to have a very painful nerve conduction test to make that diagnosis and the referral has been made for me to have it done, but there is a lot of red tape to cut through to get it scheduled.

None of these treatments fix the damage done to the heart already and none exist. There are some drugs in early trials, but we are years away from knowing if they work.

This leaves heart transplants as the only alternative. My cardiologist has said that I may have to be evaluated to see if I am a viable candidate, but it's damn hard to get a new heart and it costs nearly $1.6 million.

As for how I feel, I have very little stamina. I have mild to moderate pain in my back and extremities at all times. I have trouble eating and digesting food. I often become lightheaded and I am a fall risk. It is very hard to get the simplest of things done. Everything takes me at least twice as long as it used to do. It is a great challenge to keep a positive attitude. I don't always succeed.

As much as all of that really, really sucks, I carry on. My inherent stubbornness has proven to be an asset after all. I still enjoy almost everything that I ever did, but just not as often. I am blessed with excellent and selfless family and friends that do all that they can to help me. It is a comfort of inexpressible magnitude to have such loving support.

Thank all of you here in this wonderful forum for caring about me, too. You lift my spirits when I often can not.
Itís great to hear from you, and thanks for the update. Enjoy your films too.

Ejection fraction? I very nearly read that wrong!

Seriously though, all the very best and I know it takes effort just to post so I/we are grateful. Sending positive thoughts.

Oh, and watch The Wicker Man.
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Old Yesterday, 02:15 PM   #41027
Wendell R. Breland Wendell R. Breland is offline
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Quote:
Originally Posted by Vilya View Post
I have not been a very good supporter of physical media these last few months. I have only added these to my collection this year:
Really good to see you make a post.

Having my own health issues from time to time I can attest to the fact most everything physical (autos, movies, etc.) in life can have little importance compared to your bodyís well being.

We are all pulling for you to have some kind of medical help with your serious health issues!!!
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Old Yesterday, 02:15 PM   #41028
Steedeel Steedeel is online now
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Quote:
Originally Posted by stonesfan129 View Post
I'll be honest, I've been getting more and more stuff through Vudu and Apple. There's so many sales that it's often difficult to pass up. I know the whole 'ownership' thing is a problem for many people, but it's nice because my family and I can share our collection across three homes. Then when there are sales we buy stuff and watch it. No smudged or scratched discs, no expired codes with the disc, no skipping/freezing. There are two big ISPs in my area who I've been using for the last 12 years and I have yet to experience a total internet outage. I also can't see these studios cutting off digital copies any time soon. Just my two cents but I think I'm fine settling for this now.
You go back and forth more times than a fashion model!
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