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comment by OftenBen
OftenBen  ·  1884 days ago  ·  link  ·    ·  parent  ·  post: Pubski: February 20, 2019

News from Cleveland Clinic -

First and foremost, no transplant yet. The numbers just aren't there. Whatever is going on is complicated and poorly understood. It's believed that some amount of my chest pain is not directly originating from my heart - the current guess is micro-hypertrophied skeletal muscle in the chest wall.

Second, there is a pharmacological issue. There are several different manufacturers for the drug that I was taking, one that is known to produce quality drug with known filling agents that do not interact with the drug metabolism. I not only didn't have the good manufacturer, I had the literal worst one. This manufacturer buys drugs, equipment and filling agents cheap from India, pakistan, and several other places not known for their quality pharmaceuticals. Because of this problem, it's possible that the medication I was taking is either the incorrect drug, the incorrect dosing of the correct drug, or else contains filling agents that interact with the drug metabolism, or some combination of these issues. The doctor confiscated my bad drugs and sent them out for testing.

I've been switched to a different dosing of a different beta blocker from a manufacturer that doesn't cut corners, and batch-tests every lot of drug that is produced. Took my first dose monday evening and I can already tell it's not the right choice. My fatigue is through the roof and I'm dizzy just sitting in this chair. I have a call scheduled for friday to discuss things thankfully.

Third, he wants me off the gabapentin ASAP because it directly interferes with getting me up and active. I have an appointment with a pain management specialist coming up to hopefully begin a wean off that onto something else. No idea what though.

No answers yet, essentially. This new doc found something that he knows he can fix, the drug issue. After we fix that we re-evaluate and try again.





cgod  ·  1884 days ago  ·  link  ·  

A friend of mine just had heart transplant surgery. So far it's a big mixed bag of positive and worrisome outcomes.

The surgery paralyzed half his diaphragm making his already laboured breathing harder. He has had a lot of trouble with fluid retention, which mostly seems to be coming from certain drugs used to treat other complications. His kidneys are giving him hell, once more because of drug complications. It seems like half is new heart isn't working very well but there is hope it will kick into gear down the line.

He is able to stand up and take short unaided walks a few times a day. There are no signs of rejection.

I hope you get a heart someday and I hope it goes as smoothly as it can.

user-inactivated  ·  1883 days ago  ·  link  ·  
This comment has been deleted.
OftenBen  ·  1346 days ago  ·  link  ·  

Fuck, I miss you.

OftenBen  ·  1883 days ago  ·  link  ·  

Thanks for the support.

In the span of one day I got two ten-minute, curse filled rants about the drug thing from one of the nation's leading cardiologists. He says that it has become almost impossible to do his job because of the amount of oversight that every single pharmaceutical manufacturer and medical device company requires to make sure they aren't pushing bullshit.

Maximum effort.

thenewgreen  ·  1884 days ago  ·  link  ·  

Hey Ben, Hang in there! You're a badass.