Has anyone here gotten post cardiac injury syndrome?

[SatoriFound]

Actually, thalidomide was given to expectant mothers in the U.S. via free samples given to doctors. I have personally met a survivor whose mom was given the drug by her ob-gyn. My husband's father was a salesman for Merrell which was the U.S. distributor. The salesmen had samples to give to doctors. The drug had not been approved by the FDA. When Merrell learned that the horrific side effects were caused by the drug Merrell instructed all the sales staff to destroy all remaining samples. My husband, who was a teen at the time, help his father load the drugs into the incinerator that was in their house. Dad was devastated.

Wow. I can only imagine the guilt he felt. Luckily the laws are more stringent now. A doctor would never be allowed to give a non-FDA approved medication to a patient now. At least I don't think they could...

 

[tom in MO]

Wow. I can only imagine the guilt he felt. Luckily the laws are more stringent now. A doctor would never be allowed to give a non-FDA approved medication to a patient now. At least I don't think they could...

It happens all the time. The FDA approves a drug for condition Y but the doctor can prescribe the drug for any condition not just condition Y. That's legal. What's not legal and has generated 100s of million dollars in fines, is when the maker of the drug markets it for anything condition other the the FDA approved condition.

 

[BAV]

I've never heard it called PCIS. Right after surgery I was pretty sore, but they told me it was due to the position on the table, which is pretty much bent backwards enough for your shoulder blades to almost touch, but I don't think that would be PCIS. However, I have recurrent acute pericarditis, which is more common with mitral valve surgery. It started about 8 weeks after surgery. It would recur every time they lowered the Prednisone dosage. I stayed on a low dose of Prednisone for 9 months (and gained more weight in that 9 months than both my pregnancies combined) and then when Vioxx came out, I went off Prednisone and would take Vioxx if I started feeling the early symptom, which was always pain under my left collarbone and difficulty breathing. In the beginning, there was a lot of fluid (pericardial effusion) and they talked about a pericardial window, but it dissipated on its own. After that, I'd get the pain, but no fluid. The recurrences were once or twice a month for the first year, gradually growing farther apart until it happened 2-3 times a year. About 7-8 years ago I was put on a course of Colchecine (a gout medicine) and now I get it maybe once every year or two. As soon as I feel the pain, I take Aleve for a couple of days, and it goes away.

Do you mind sharing how the colchecine is working out for you ? Any side effects?

I had my Ross procedure 8/7 and due to excessive bleeding I had to have a re operation within 12 hours of the first because there was a scrape on my heart. I've been dealing with symptoms of inflammation which they think is due to having two surgeries. It took almost two weeks of fever for them to prescribe steroids which knocked the fever out and made me feel way better. I have one more week left of steroids and then they want me to take colchecine. Have you tolerated it well? Anything you wish you knew about it before you started taking it?

 

[Pixelgrowth]

Do you mind sharing how the colchecine is working out for you ? Any side effects?

I had my Ross procedure 8/7 and due to excessive bleeding I had to have a re operation within 12 hours of the first because there was a scrape on my heart. I've been dealing with symptoms of inflammation which they think is due to having two surgeries. It took almost two weeks of fever for them to prescribe steroids which knocked the fever out and made me feel way better. I have one more week left of steroids and then they want me to take colchecine. Have you tolerated it well? Anything you wish you knew about it before you started taking it?

The colchicine hasn't caused me any problems. The steroids I hared. I couldn't sleep and felt off all the time. However not sure which drug it was but my effusions have gone away and I'm pretty much back to normal. Ive been off the steroids for about a week and a half now. And I still have 2 weeks of colchicine.

 

[BAV]

The colchicine hasn't caused me any problems. The steroids I hared. I couldn't sleep and felt off all the time. However not sure which drug it was but my effusions have gone away and I'm pretty much back to normal. Ive been off the steroids for about a week and a half now. And I still have 2 weeks of colchicine.

I'm super happy to hear that your effusions have cleared up and you're doing well. Thanks for sharing on the colchicine. That makes me feel better as i had never heard of it before. I wish you a speedy and 100% recovery

 

[tommyboy14]

@BAV I am really sorry to hear about your complications post Ross procedure. Unfortunately, sometimes the side effects can be a bit more significant after complex surgeries. I also had bleeding around the heart after my second AVR, but it stopped by itself, so they didnt need to open me up again.

Sorry to hear that they had to open you twice.

 

[Lisa from LJ]

Do you mind sharing how the colchecine is working out for you ? Any side effects?

I had my Ross procedure 8/7 and due to excessive bleeding I had to have a re operation within 12 hours of the first because there was a scrape on my heart. I've been dealing with symptoms of inflammation which they think is due to having two surgeries. It took almost two weeks of fever for them to prescribe steroids which knocked the fever out and made me feel way better. I have one more week left of steroids and then they want me to take colchecine. Have you tolerated it well? Anything you wish you knew about it before you started taking it?

I've never had any issues with it, but never need to take it for long. I think it was 10 days the first time I took it and when I have recurrences, I take it until the symptoms go away, usually no more than 3-5 days.

 

[pellicle]

Hi

I'm very sorry to read this:

I've been dealing with symptoms of inflammation which they think is due to having two surgeries.

Best Wishes

 

[Zara0006]

Hi

I'm very sorry to read this:


Best Wishe

Do you mind sharing how the colchecine is working out for you ? Any side effects?

I had my Ross procedure 8/7 and due to excessive bleeding I had to have a re operation within 12 hours of the first because there was a scrape on my heart. I've been dealing with symptoms of inflammation which they think is due to having two surgeries. It took almost two weeks of fever for them to prescribe steroids which knocked the fever out and made me feel way better. I have one more week left of steroids and then they want me to take colchecine. Have you tolerated it well? Anything you wish you knew about it before you started taking it?

I’ve only had one surgery, and have now had pericarditis/myocarditis twice in 3 months afterwards! I’ve never had any issues before the op and hardly ever got sick, no known autoimmune issues or other complications.

They only gave me a 2-month supply of colchicine initially, and most doctors agree that it should be taken for 3 months to prevent recurrences. As soon as I stopped, symptoms returned but worse and I spent another week in hospital! Now just hoping that another 6 weeks of colchicine will help and I will not have to experience this again!

 

[pellicle]

Good Morning

I’ve only had one surgery, and have now had pericarditis/myocarditis twice in 3 months afterwards!

twice suggests to me that you never properly cleared from it.

Have you been assigned (or sought) an infection specialist? Have you been given any information / indication on what they think is the problem (what is causing your inflamation)?

I’ve never had any issues before the op and hardly ever got sick, no known autoimmune issues or other complications.

noted

They only gave me a 2-month supply of colchicine initially, and most doctors agree that it should be taken for 3 months to prevent recurrences.

so, in case you're unfamiliar with Colchicine, its not an antibiotic and so its administration is not based on this possibility (infection)

https://en.wikipedia.org/wiki/Colchicine

of note is the first paragraph

Colchicine is a medication used to prevent and treat gout,[3][4] to treat familial Mediterranean fever[5] and Behçet's disease,[6] and to reduce the risk of myocardial infarction.[7] The American College of Rheumatology recommends colchicine, nonsteroidal anti-inflammatory drugs (NSAIDs) or steroids in the treatment of gout.[8][9] Other uses for colchicine include the management of pericarditis.[10]​

As soon as I stopped, symptoms returned but worse and I spent another week in hospital! Now just hoping that another 6 weeks of colchicine will help

I have my doubts, but I don't know the cause (I suspect neither do they) ... my view tends towards:

If its cause is infective then you need to get that diagnosed relatively quickly?

Has anyone done a CR-p test? Its not a "definitive test" more a test of narrowing things down. They may have dismissed it as being not specific enough (or done it already).

Best Wishes

 

[Zara0006]

Good Morning

twice suggests to me that you never properly cleared from it.

Have you been assigned (or sought) an infection specialist? Have you been given any information / indication on what they think is the problem (what is causing your inflamation)?


noted

so, in case you're unfamiliar with Colchicine, its not an antibiotic and so its administration is not based on this possibility (infection)

https://en.wikipedia.org/wiki/Colchicine

of note is the first paragraph

Colchicine is a medication used to prevent and treat gout,[3][4] to treat familial Mediterranean fever[5] and Behçet's disease,[6] and to reduce the risk of myocardial infarction.[7] The American College of Rheumatology recommends colchicine, nonsteroidal anti-inflammatory drugs (NSAIDs) or steroids in the treatment of gout.[8][9] Other uses for colchicine include the management of pericarditis.[10]​

I have my doubts, but I don't know the cause (I suspect neither do they) ... my view tends towards:
View attachment 890506

If its cause is infective then you need to get that diagnosed relatively quickly?

Has anyone done a CR-p test? Its not a "definitive test" more a test of narrowing things down. They may have dismissed it as being not specific enough (or done it already).

Best Wishes

Yes I agree that I probably didn’t recover fully the first time. I have an appointment in a few months with a top cardiologist who specialises in this, but was advised that patients often get it twice (?) and hopefully it won’t recur.

I have had a lot of CRP tests. Cardiologists and the surgeons have been very confused by the results - it stayed at 200+ for an entire month last time, despite taking oral antibiotics and colchicine (anti-inflammatory), my research has concluded that colchicine is best treatment/prevention of pericarditis and cardiology had already prescribed this. Apparently viral infections are unlikely to raise CRP to that extent so antibiotics were a precaution, my only symptoms were intense chest and shoulder pain the first time.

This time, CRP reached over 350 by the 4th day, identical pain as previously- could not move without IV painkillers and fever was consistently 100+ (didn’t have this before). I was given 3 different antibiotics and eventually after taking some broad spectrum IV for a week, CRP finally went down to 30 when I left hospital on day 8 and pain/fever improved. Consultants didn’t really have any answers except that I probably had a chest infection twice, which resulted in pericarditis and/or myocarditis twice, and also had all symptoms and markers of sepsis the second time. Blood cultures/echo discounted endocarditis and confirmed a bacterial infection, but I was given IV antibiotics very quickly, so only had one blood test beforehand.

I wonder if a bacterial infection could’ve caused myocarditis, and as it wasn’t treated properly the first time (5 days of oral antibiotics), it resulted in sepsis the second time? Doctors think I have recovered too quickly for it to have been endocarditis or sepsis!

 

[pellicle]

Hi

Yes I agree that I probably didn’t recover fully the first time. I have an appointment in a few months with a top cardiologist who specialises in this, but was advised that patients often get it twice (?) and hopefully it won’t recur.

fingers crossed ...

I have had a lot of CRP tests.

good

Cardiologists and the surgeons have been very confused by the results

unsurprising ...

- it stayed at 200+ for an entire month last time, despite taking oral antibiotics and

ok, so this clears up that your high score is not an indication of inflammation related to bacterial infection (or reduces its likelihood). However:

... I was given 3 different antibiotics and eventually after taking some broad spectrum IV for a week, CRP finally went down to 30 when

this is not a long time and that it went down to 30 does perhaps still finger bacteria.

colchicine (anti-inflammatory),

I'm unclear how well colchicine performs as an anti-inflammatory in comparison to NSAIDS ...

... Apparently viral infections are unlikely to raise CRP to that extent so antibiotics were a precaution,

antibiotics have no direct effect on viral infections as they operate on bacterial cell growth. I would see no reason to suspect viral.

How long post surgery was this again?

I left hospital on day 8 and pain/fever improved. Consultants didn’t really have any answers except that I probably had a chest infection twice, which resulted in pericarditis and/or myocarditis twice,

right ....

Blood cultures/echo discounted endocarditis and confirmed a bacterial infection, but I was given IV antibiotics very quickly, so only had one blood test beforehand.

yep ... same here, but in my case the bacteria was eventually isolated as being a bacteria with a 12 day culture time ... meaning it takes 12 days and the only reason they did that was because of a very firm direction from my surgeon to the infection team. We (him and me) were very clear it was an infection in my case.

I wonder if a bacterial infection could’ve caused myocarditis, and as it wasn’t treated properly the first time (5 days of oral antibiotics), it resulted in sepsis the second time? Doctors think I have recovered too quickly for it to have been endocarditis or sepsis!

I would wonder the same, but the facts will emerge. Either it'll pass or it'll return.

I was on antibiotics for 10 years after my second debridement surgery (but I didn't have pericarditis).

Best Wishes

 

[Zara0006]

fingers crossed ...


good

unsurprising ...

ok, so this clears up that your high score is not an indication of inflammation related to bacterial infection (or reduces its likelihood). However:


this is not a long time and that it went down to 30 does perhaps still finger bacteria.



I'm unclear how well colchicine performs as an anti-inflammatory in comparison to NSAIDS ...



antibiotics have no direct effect on viral infections as they operate on bacterial cell growth. I would see no reason to suspect viral.

How long post surgery was this again?



right ....



yep ... same here, but in my case the bacteria was eventually isolated as being a bacteria with a 12 day culture time ... meaning it takes 12 days and the only reason they did that was because of a very firm direction from my surgeon to the infection team. We (him and me) were very clear it was an infection in my case.


I would wonder the same, but the facts will emerge. Either it'll pass or it'll return.

I was on antibiotics for 10 years after my second debridement surgery (but I didn't have pericarditis).

Best Wishes

First infection was one month post surgery and second was after 3 months.
I’m not sure why they were so certain it was viral the first time, maybe as I didn’t have a fever. I’m just praying that it wasn’t endocarditis or sepsis as I don’t want to deal with a permanent recurrence of those, I thought pericarditis was bad enough!

It was lucky that they managed to isolate bacteria and diagnose it in your case, it doesn’t seem to be the norm!

 

[pellicle]

Morning

I’m not sure why they were so certain it was viral the first time,

probably neither are they

I’m just praying that it wasn’t endocarditis or sepsis as I don’t want to deal with a permanent recurrence of those, I thought pericarditis was bad enough!

ok, well lets just focus on the permanent part of that. Its not going to be a permanent thing. Its like when your car is acting up, you take it in to the garage and ask them what's wrong with it but its not doing "that thing". A good mechanic will tell you to come back with the car when its "doing that thing" because then he can try to figure it out (and he's therefore not wasting your money).

So unless you are sick and you do have another recurrence (you may not) they have nothing to go on, no data to work with and so all they can do is "go by the book and try what it says" which is to say "do something general and hope it goes away by itself". Which it did in this case.

Its probably not endo because that stuff is easy to culture. Also endo is typically caused by oral health issues (not clean mouths).

Remember, its always your body which heals itself, even if it does require a bit of an external push along by a surgeon to swap out a part, or diagnosis of an antibiotic to hold back the infection; it is the body which grows back around the wound and the body which kills the bacteria.

I know its difficult and I know its hard to control your emotions (don't ask me how I know) but the best thing for it is to just "do other things" as you can and put it out of your mind.

Eat healthy, do as much exersize as possible / prudent, and most of all keep a good attitude. The last is important because being despondent does actually impair your immune systems ability.

If there is one thing I don't like about the modern re-interpretation of Dune its that the Bene Gesserit pray of dealing with fear is downplayed.

Read and re read that until you can say it from memory ... its a good mediation.

Recovery is sometimes bumpy ... don't ask me how I know (and I've had 3 OHS).

Best Wishes

 

[Zara0006]

probably neither are they



ok, well lets just focus on the permanent part of that. Its not going to be a permanent thing. Its like when your car is acting up, you take it in to the garage and ask them what's wrong with it but its not doing "that thing". A good mechanic will tell you to come back with the car when its "doing that thing" because then he can try to figure it out (and he's therefore not wasting your money).

So unless you are sick and you do have another recurrence (you may not) they have nothing to go on, no data to work with and so all they can do is "go by the book and try what it says" which is to say "do something general and hope it goes away by itself". Which it did in this case.

Its probably not endo because that stuff is easy to culture. Also endo is typically caused by oral health issues (not clean mouths).

Remember, its always your body which heals itself, even if it does require a bit of an external push along by a surgeon to swap out a part, or diagnosis of an antibiotic to hold back the infection; it is the body which grows back around the wound and the body which kills the bacteria.

I know its difficult and I know its hard to control your emotions (don't ask me how I know) but the best thing for it is to just "do other things" as you can and put it out of your mind.

Eat healthy, do as much exersize as possible / prudent, and most of all keep a good attitude. The last is important because being despondent does actually impair your immune systems ability.

If there is one thing I don't like about the modern re-interpretation of Dune its that the Bene Gesserit pray of dealing with fear is downplayed.

View attachment 890509

Read and re read that until you can say it from memory ... its a good mediation.

Recovery is sometimes bumpy ... don't ask me how I know (and I've had 3 OHS).

Best Wishes

Thanks for the advice! I’m just aware that once you’ve had any of these once, they are more likely to happen again. However I am really trying to not focus on that as it would drive me insane wondering what when the next episode will occur! Although I’ve just ordered myself an expensive thermometer so I hope I don’t become obsessive over checking whether I have a fever!
Only because I didn’t realise last time that it was at 104. I was just feeling very cold with worsening chest pain and just happened to see the GP, who referred me to hospital straight away, otherwise who knows how long before I would’ve had it checked out!

 

[pellicle]

I’m just aware that once you’ve had any of these once, they are more likely to happen again

My view is that the actual cause is bad behavior (poor oral hygiene for instance) and the behavior is the etiology.

Perhaps to a lesser extent your own body flora

 

[Lisa from LJ]

I’ve only had one surgery, and have now had pericarditis/myocarditis twice in 3 months afterwards! I’ve never had any issues before the op and hardly ever got sick, no known autoimmune issues or other complications.

They only gave me a 2-month supply of colchicine initially, and most doctors agree that it should be taken for 3 months to prevent recurrences. As soon as I stopped, symptoms returned but worse and I spent another week in hospital! Now just hoping that another 6 weeks of colchicine will help and I will not have to experience this again!

Now that you mention it, it may have been for 3 months. It was about 10-15 years ago, so I don't remember exactly! I do have auto-immune issues, knew that from Rheumatic Fever, which is what damaged my heart, and I've had others since then. I hope it zaps it this time and you don't get it again.