The "What's on your mind?" thread

[sfmarine]

Hang tough, Vilya and keep fighting the good fight. It's never good when the doctor tells you there's nothing more they can do for you. I had one call me an enigma once.

It will be a long and difficult road but let's hope that appointment next month will steer you in the right direction and get you on a donor list.

We're all here to support ya!

[Hitman Horton]

Originally Posted by Vilya

Please excuse my reposting this here as I am too tired (lazy?) to rewrite it for this thread. I enjoy conversing with all of the "usual suspects" that frequent these parts.

Four years ago today I went to the emergency room with what I thought was a digestive problem never suspecting that it was only the beginning of something much more serious. 10 surgeries and well over 200 appointments later brings me to this anniversary and the beginning of my final challenge.

Today is also one month since the implantation of my biventricular pacemaker; I still have 12 more days of post-op restrictions and I will be so glad when I get past them.

I saw my primary cardiologist on May 7th with my good friend and chauffeur as a witness to the conversation. My doctor told me that there is nothing more that he can do for me and that I am already getting every treatment that is available. He said that I need a heart transplant and probably the liver also. Transplantation is the only option left to me. It is worth noting that my neurologist does not agree that I need a liver transplant.

My main cardiologist is turning my care over to a transplant cardiologist whom I have seen twice before. I will be seeing my transplant cardiologist on June 5th and he is putting me back on the treadmill for another cardiac stress test (CPET). The test is riskier for me now as I have a high degree atrial-ventricular block, which is considered a relative contraindication for a CPET test.

The CPET test is just one of many tests that determine if a patient is a candidate for a heart transplant. The qualification process just to get on the transplant list is daunting both medically and financially, but my June 5th appointment is the first step of very many towards that objective.

My transplant cardiologist is also of the opinion that I need a double transplant and that only compounds the complexity and difficulty of it actually happening.

After these long and unimaginably difficult four years it has come to this. I need a heart transplant and maybe a liver transplant, too. It is the only option left to me and not a very easy one to accomplish. All I can do is try and we all know just how trying I can be.

I had an uncle that lived many years after his heart transplant. His death was not heart related. Good luck. I'll keep you in my thoughts.

[mcrowell415]

Originally Posted by Vilya

Please excuse my reposting this here as I am too tired (lazy?) to rewrite it for this thread. I enjoy conversing with all of the "usual suspects" that frequent these parts.

Four years ago today I went to the emergency room with what I thought was a digestive problem never suspecting that it was only the beginning of something much more serious. 10 surgeries and well over 200 appointments later brings me to this anniversary and the beginning of my final challenge.

Today is also one month since the implantation of my biventricular pacemaker; I still have 12 more days of post-op restrictions and I will be so glad when I get past them.

I saw my primary cardiologist on May 7th with my good friend and chauffeur as a witness to the conversation. My doctor told me that there is nothing more that he can do for me and that I am already getting every treatment that is available. He said that I need a heart transplant and probably the liver also. Transplantation is the only option left to me. It is worth noting that my neurologist does not agree that I need a liver transplant.

My main cardiologist is turning my care over to a transplant cardiologist whom I have seen twice before. I will be seeing my transplant cardiologist on June 5th and he is putting me back on the treadmill for another cardiac stress test (CPET). The test is riskier for me now as I have a high degree atrial-ventricular block, which is considered a relative contraindication for a CPET test.

The CPET test is just one of many tests that determine if a patient is a candidate for a heart transplant. The qualification process just to get on the transplant list is daunting both medically and financially, but my June 5th appointment is the first step of very many towards that objective.

My transplant cardiologist is also of the opinion that I need a double transplant and that only compounds the complexity and difficulty of it actually happening.

After these long and unimaginably difficult four years it has come to this. I need a heart transplant and maybe a liver transplant, too. It is the only option left to me and not a very easy one to accomplish. All I can do is try and we all know just how trying I can be.

Wishing the best for you as always. I know your fight is a tough one and I am praying for you.

[sfmarine]

Amazon doesn’t seem to be giving me the option to replace items that are damaged/defective. That is rather frustrating when you’re trying to replace bad discs.

[Fors*]

Originally Posted by sfmarine

Amazon doesn’t seem to be giving me the option to replace items that are damaged/defective. That is rather frustrating when you’re trying to replace bad discs.

Won't they flag you in some manner if they think you have "abused" the process (like too many returns)?

[sfmarine]

Originally Posted by Fors*

Won't they flag you in some manner if they think you have "abused" the process (like too many returns)?

That’s been the general consensus. It is possible that they flagged me, but I wasn’t notified.

[fighthefutureofhd]

Originally Posted by sfmarine

Amazon doesn’t seem to be giving me the option to replace items that are damaged/defective. That is rather frustrating when you’re trying to replace bad discs.

Amazon can be like that though. When I got a package from Amazon (sold by Amazon), there was nothing in the package. I would've assumed it was stolen by someone, but the package was sealed. I went to get a refund/do a return and there was no option for not receiving said package. I noted in the return why I was returning it. After a month or so, they still charged me for not returning the item. I had to call in and explain to them that it is very hard to return something when you never got it in the first place. They got it squared away, but I should not have had to call them up in the first place.

[red_5ive]

Originally Posted by sfmarine

That’s been the general consensus. It is possible that they flagged me, but I wasn’t notified.

[Driver78]

Originally Posted by Vilya

Please excuse my reposting this here as I am too tired (lazy?) to rewrite it for this thread. I enjoy conversing with all of the "usual suspects" that frequent these parts.

[Show spoiler]Four years ago today I went to the emergency room with what I thought was a digestive problem never suspecting that it was only the beginning of something much more serious. 10 surgeries and well over 200 appointments later brings me to this anniversary and the beginning of my final challenge.

Today is also one month since the implantation of my biventricular pacemaker; I still have 12 more days of post-op restrictions and I will be so glad when I get past them.

I saw my primary cardiologist on May 7th with my good friend and chauffeur as a witness to the conversation. My doctor told me that there is nothing more that he can do for me and that I am already getting every treatment that is available. He said that I need a heart transplant and probably the liver also. Transplantation is the only option left to me. It is worth noting that my neurologist does not agree that I need a liver transplant.

My main cardiologist is turning my care over to a transplant cardiologist whom I have seen twice before. I will be seeing my transplant cardiologist on June 5th and he is putting me back on the treadmill for another cardiac stress test (CPET). The test is riskier for me now as I have a high degree atrial-ventricular block, which is considered a relative contraindication for a CPET test.

The CPET test is just one of many tests that determine if a patient is a candidate for a heart transplant. The qualification process just to get on the transplant list is daunting both medically and financially, but my June 5th appointment is the first step of very many towards that objective.

My transplant cardiologist is also of the opinion that I need a double transplant and that only compounds the complexity and difficulty of it actually happening.

After these long and unimaginably difficult four years it has come to this. I need a heart transplant and maybe a liver transplant, too. It is the only option left to me and not a very easy one to accomplish. All I can do is try and we all know just how trying I can be.

Very sorry to hear this. Can't really say much more other than hang in there! One question (and you don't have to answer if you don't want to): What's the correlation between your heart and digestive system? What does one have to do with the other? Just curious.

[Waboman]

Originally Posted by sfmarine

That’s been the general consensus. It is possible that they flagged me, but I wasn’t notified.

Not only have you been flagged, they use you in training new employees. The sf phenomenon.

[EinCB128]

Besides eBay, are there any other websites I can sell my foreign Blu-rays?

I usually sell my American Blu-rays on decluttr, but I do not know a website where I can easily sell my imported Blu-rays.

Thank you.

[russweiss1]

Originally Posted by EinCB128

Besides eBay, are there any other websites I can sell my foreign Blu-rays?

I've seen several members selling discs on this site.

[sfmarine]

Originally Posted by Waboman

Not only have you been flagged, they use you in training new employees. The sf phenomenon.

Complete with a PowerPoint presentation.

[RageATL]

In all my years of playing guitar, I’ve never been able to vocalize very much while playing, but for some reason, it just happened tonight…like a switch was flipped and some connection was made, it’s like I finally got out of my own damn way. It’s kinda overwhelming.

[Vilya]

Originally Posted by Driver78

Very sorry to hear this. Can't really say much more other than hang in there! One question (and you don't have to answer if you don't want to): What's the correlation between your heart and digestive system? What does one have to do with the other? Just curious.

Thank you for caring and thanks to everyone who has shown their concern for me. It is very much appreciated.

I presented to the Emergency Room on May 29, 2021 with what I thought was the recurrence of a previous digestive problem that had required surgery twice before in 1993 and 2004- and I was correct about that and then some. During the examination it was discovered that I also had heart failure of some yet to be determined type.

It took 22 months to correctly diagnose my heart disease. In March of 2023 I was diagnosed with the rare disease Hereditary Transthyretin-mediated Amyloidosis- Cardiomyopathy (abbreviated hATTR-CM). In November of 2023 I was also diagnosed with the related rare disease Hereditary Transthyretin-mediated Amyloidosis- Peripheral Neuropathy (hATTR-PN).

hATTR-CM, and the PN variety, are multi-systemic diseases. The Mayo Hospital defines it thusly:

"ATTR amyloidosis is a progressive and fatal disease that manifests clinically with sensorimotor polyneuropathy, autonomic neuropathy, gastrointestinal disturbances, and cardiomyopathy."

https://ce.mayo.edu/sites/default/fi...%20Booklet.pdf

hATTR-CM graphic.jpg

I have disease involvement in all of the areas shown except for Carpal Tunnel, Ocular, and Renal, but my disease could yet affect these areas. If it reaches my eyes it could result in blindness. I have 15 doctors across several specialties treating me.

[sfmarine]

The Beatles in Mono vinyl set is sold out already.

[red_5ive]

Originally Posted by Vilya

Thank you for caring and thanks to everyone who has shown their concern for me. It is very much appreciated.

[Show spoiler]I presented to the Emergency Room on May 29, 2021 with what I thought was the recurrence of a previous digestive problem that had required surgery twice before in 1993 and 2004- and I was correct about that and then some. During the examination it was discovered that I also had heart failure of some yet to be determined type.

It took 22 months to correctly diagnose my heart disease. In March of 2023 I was diagnosed with the rare disease Hereditary Transthyretin-mediated Amyloidosis- Cardiomyopathy (abbreviated hATTR-CM). In November of 2023 I was also diagnosed with the related rare disease Hereditary Transthyretin-mediated Amyloidosis- Peripheral Neuropathy (hATTR-PN).

hATTR-CM, and the PN variety, are multi-systemic diseases. The Mayo Hospital defines it thusly:

"ATTR amyloidosis is a progressive and fatal disease that manifests clinically with sensorimotor polyneuropathy, autonomic neuropathy, gastrointestinal disturbances, and cardiomyopathy."

https://ce.mayo.edu/sites/default/fi...%20Booklet.pdf

Attachment 315933

I have disease involvement in all of the areas shown except for Carpal Tunnel, Ocular, and Renal, but my disease could yet affect these areas. If it reaches my eyes it could result in blindness. I have 15 doctors across several specialties treating me.

Hope you get all the care you require and that everything goes well. Hang in there!

[red_5ive]

Originally Posted by RageATL

In all my years of playing guitar, I’ve never been able to vocalize very much while playing, but for some reason, it just happened tonight…like a switch was flipped and some connection was made, it’s like I finally got out of my own damn way. It’s kinda overwhelming.

Very cool sir!

I have my own problem with it as well. I can play and sing, but I think I have some kind of ADD as when I get focused my mind starts to wander and next thing I know I get off track and miss a chord or 5 lol. It's why I rarely play in front of people.

[red_5ive]

Originally Posted by sfmarine

The Beatles in Mono vinyl set is sold out already.

Thanks goodness. It was in the back of my mind since you posted it, but I don't need to be spending that kind of $$ right now post son's wedding and other son's college tuition second mortgage, who just graduated so I'm done with that!

However, it is getting me to justify the red & blue albums on vinyl for 1/4 the price . Looking at them right now and thisclose to pulling the trigger.

[sfmarine]

Originally Posted by red_5ive

Thanks goodness. It was in the back of my mind since you posted it, but I don't need to be spending that kind of $$ right now post son's wedding and other son's college tuition second mortgage, who just graduated so I'm done with that!

However, it is getting me to justify the red & blue albums on vinyl for 1/4 the price . Looking at them right now and thisclose to pulling the trigger.

Yeah...I mean, I feel kinda relieved for the same reason. If I didn't already own the CD box set, then I probably would have jumped on it. I had anticipated it would become a wide release available on Amazon, etc. and perhaps go on sale at some point. $545/$40 per album is a lot of cheddar. Boy did I misjudge that one.