New with endocarditis and possible valve replacement in the near future

[Eni_M]

Hello, everyone!

I am Eni, 46 years old, living in Albania, Europe.

I have been recently diagnosed with infective endocarditis. It all started with high fever, chills, abnormal endless sweating, strong headaches, fatigue. Two days later, lab tests I have performed resulted in a septic shock. The cause of the IE is still unclear in my case since my blood cultures came out negative because I’ve been treated several days prior to have them checked with antibiotics.

I have been hospitalized for the first three weeks and now I am in a combination of oral antibiotics, finishing this week the required six weeks protocol of antibiotics’ treatment. In the judgement of my doctor, I will continue taking oral antibiotics for two more weeks, so eight weeks in total. I do weekly blood tests and everything is under control until now. The vegetation has turned into a calcification mass of 0.9mm-10mm near my left mitral valve. This mass is immobile until now and with no risk of embolism causing only have a minor regurgitation.
I am a mother of two beautiful daughters and my only worry is how much this condition will affect my life and the ability to serve my family the way I used to. I am a very active person, I used to weight training 4-5 times a week. Will it be possible to continue a fitness regimen after all?

I would appreciate any kind of feedback!

Thank you in advance!

 

[ATHENS1964]

Do what the doctors tell you, be careful and follow a healthy diet and don't get tired.

 

[pellicle]

Good morning

sorry to read of your situation.

I am Eni, 46 years old, living in Albania, Europe.

that's good background and so in the interests of being succinct (seldom accused of that) let me say the following points up front

• your location will probably mean your team will give you a mechanical valve, this is actually a good thing but will require you adapt a little to that.
• read up on the history of one of my fellow Australians Ski Girl (see here), her history is a bit similar to yours as is her interest in exersize and activity
• if you get a mechanical valve you'll be placed on a class of drug called Anti Coagulant (this is known as Anti Coagulant Therapy). This will be for life. The best outcomes from that are found in managing (something which you'll come to know if you don't already) a "metric" called INR. If this happens and if you wish to reach out and I can set you onto a path which will help you learn and manage that.

For now though just as Athens said, just follow what you team suggests

... The cause of the IE is still unclear in my case since my blood cultures came out negative because I’ve been treated several days prior to have them checked with antibiotics.

this is sadly the case ... but it doesn't really matter the cause nor the specifics of the bacteria involved. Let them do thir work in exploring and deciding.

I have been hospitalized for the first three weeks and now I am in a combination of oral antibiotics, finishing this week the required six weeks protocol of antibiotics’ treatment. In the judgement of my doctor, I will continue taking oral antibiotics for two more weeks, so eight weeks in total. I do weekly blood tests and everything is under control until now.

this can be the case and you may indeed avoid any surgery, that would be the optimal outcome!

The vegetation has turned into a calcification mass of 0.9mm-10mm near my left mitral valve. This mass is immobile until now and with no risk of embolism causing only have a minor regurgitation. I am a mother of two beautiful daughters and my only worry is how much this condition will affect my life and the ability to serve my family the way I used to.

I'm not sure about the mass and their planned treatments for that, but long term, assuming a valve replacement, not at all. For now just rest and try not to run scenarios of the (often worst kind of) possible outcomes.

I am a very active person, I used to weight training 4-5 times a week. Will it be possible to continue a fitness regimen after all?

To my understanding, I'd say most certainly you can follow in Ski Girls foot steps.

Best Wishes

 

[Eni_M]

Good morning

sorry to read of your situation.

that's good background and so in the interests of being succinct (seldom accused of that) let me say the following points up front

• your location will probably mean your team will give you a mechanical valve, this is actually a good thing but will require you adapt a little to that.
• read up on the history of one of my fellow Australians Ski Girl (see here), her history is a bit similar to yours as is her interest in exersize and activity
• if you get a mechanical valve you'll be placed on a class of drug called Anti Coagulant (this is known as Anti Coagulant Therapy). This will be for life. The best outcomes from that are found in managing (something which you'll come to know if you don't already) a "metric" called INR. If this happens and if you wish to reach out and I can set you onto a path which will help you learn and manage that.

For now though just as Athens said, just follow what you team suggests



this is sadly the case ... but it doesn't really matter the cause nor the specifics of the bacteria involved. Let them do thir work in exploring and deciding.


this can be the case and you may indeed avoid any surgery, that would be the optimal outcome!


I'm not sure about the mass and their planned treatments for that, but long term, assuming a valve replacement, not at all. For now just rest and try not to run scenarios of the (often worst kind of) possible outcomes.



To my understanding, I'd say most certainly you can follow in Ski Girls foot steps.

Best Wishes

Dear Pellicle, thank you very much for all the detailed explanations and advices. I feel grateful to have found this place and being able to learn from the knowledge and experience of other people. I really appreciate your support.

Warm regards!

 

[Eni_M]

Do what the doctors tell you, be careful and follow a healthy diet and don't get tired.

Thank you very much for your response and advice. I am getting a lot of rest and thank God, I have a lot of relatives and friends helping me to get through this difficult time.

Wishing you all the best!

 

[mlewis30]

Eni, I also had a very similar history as yours, dx vegetative endocarditis with unknown origin. I had my aortic and mitral valves replaced (mechanical valves) two months after completing antibiotics. It's been one year now, and I push myself as hard as I want to physically. The most difficult issue for me was figuring out the balance with diet and INR. I mistakenly thought that my cardiologist and his office was going to be my main source of information, and in reality, I have gotten very little quality information from the cardiologists that I have had thus far. This forum has been a wealth of good information and advice, and am so grateful to have found it. The only advice I would suggest is to be ready to educate yourself (which you have already done), and get yourself your own CoaguChek monitor to check your blood yourself, in addition to the coag clinic, and research vitamin K dietary concerns (this help me a lot https://www.drgourmet.com/md/vitk_by_mcg.pdf. Good luck with it all.

 

[ATHENS1964]

I think that in Albania they give acetocoumarol (sintrrom), so if needed I can maybe help, I can also help with the acquisition of a CoaguChek INRange system if needed.

 

[pellicle]

I think that in Albania they give acetocoumarol (sintrrom), so if needed I can maybe help, I can also help with the acquisition of a CoaguChek INRange system if needed.

for what its worth I'm working with a young man from Bosnia who is on Sintrom and while his INR is a little more responsive to forgetting to take his dose it fits with my existing working model of how to appropriately dose to remain within range and estimate new doses deal with "changes". He's been in his range over 80% of the time.

 

[ATHENS1964]

for what its worth I'm working with a young man from Bosnia who is on Sintrom and while his INR is a little more responsive to forgetting to take his dose it fits with my existing working model of how to appropriately dose to remain within range and estimate new doses deal with "changes". He's been in his range over 80% of the time.

At this moment in some countries there is a shortage of this specific anticoagulant, if someone from these countries has difficulty I can help, also in some countries the inrrange is not provided by the insurance system for free and there is a way to help him get it for free.
Sintrom is available in the Balkan countries only in a 4mg package, see photo, mine is 1.5 a day, tell me how can someone cut the pill easily without crushing it?

 

[ATHENS1964]

In order not to crush the pill, the only way to take 0.5mg is with the separator device that I am showing who does not have blades, it just breaks on contact and you can let one end touch the other and so there is no wear, the last separator is not it does work, it crumbles and the cutting of it breaks down quickly.
Each 0.5 mg that is on the right is cut with a simple push, so I have 2 doses of 1.5 mg and 2 doses of 1 mg

 

[Eni_M]

Eni, I also had a very similar history as yours, dx vegetative endocarditis with unknown origin. I had my aortic and mitral valves replaced (mechanical valves) two months after completing antibiotics. It's been one year now, and I push myself as hard as I want to physically. The most difficult issue for me was figuring out the balance with diet and INR. I mistakenly thought that my cardiologist and his office was going to be my main source of information, and in reality, I have gotten very little quality information from the cardiologists that I have had thus far. This forum has been a wealth of good information and advice, and am so grateful to have found it. The only advice I would suggest is to be ready to educate yourself (which you have already done), and get yourself your own CoaguChek monitor to check your blood yourself, in addition to the coag clinic, and research vitamin K dietary concerns (this help me a lot https://www.drgourmet.com/md/vitk_by_mcg.pdf. Good luck with it all.

Thank you very much for your resourceful feedback. I am deeply touched by the way people here help and try to make aware each-other on how to protect their health at their best. I am so happy that you feel good after operation. Every story I have read in this forum, including yours, fills me with hope and deeper understanding of my condition.

I have good medical knowledge partly because of my profession as a psychologist and partly because I have closely worked for several years before with protection of patients’ rights in my country. There is a lack of information here about endocarditis and valve replacement management. Being a patient myself now I clearly understand that the right information and proper guidance are like a bright light that makes it safer for us to pass through this tunnel of difficulties with which the disease confronts us.

I wish you all the best and once again thank you!

 

[pellicle]

Balkan countries only in a 4mg package, see photo, mine is 1.5 a day, tell me how can someone cut the pill easily without crushing it?

that is exactly what the fellow I know is doing, cutting it. He's using clippers and cutting along that line

I do the same with even my quite small 1, 3 and 5mg pills to make smaller amounts.

 

[pellicle]

Being a patient myself now I clearly understand that the right information and proper guidance are like a bright light that makes it safer for us to pass through this tunnel of difficulties with which the disease confronts us.

I just want to add that some of us who would like to shine such a light are stymied by the risks of litigation from the dull who make their own problems and then litigage for compensation (I don't think that in this case they did litigate)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8202806/
obtaining insurance for liability / indemnity is difficult and vexing ...

 

[ATHENS1964]

that is exactly what the fellow I know is doing, cutting it. He's using clippers and cutting along that line

I do the same with even my quite small 1, 3 and 5mg pills to make smaller amounts.

Breaking the sintrom into 1/8 is difficult

 

[pellicle]

Breaking the sintrom into 1/8 is difficult

1/8ths no doubt, but quaters should be ok ... yes, I realise for low dose patients that difficult. I know one member here who takes 1.25mg of warfarin daily

 

[Eni_M]

I just want to add that some of us who would like to shine such a light are stymied by the risks of litigation from the dull who make their own problems and then litigage for compensation (I don't think that in this case they did litigate)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8202806/
I am very sorry to hear that.

 

[Eni_M]

At this moment in some countries there is a shortage of this specific anticoagulant, if someone from these countries has difficulty I can help, also in some countries the inrrange is not provided by the insurance system for free and there is a way to help him get it for free.
Sintrom is available in the Balkan countries only in a 4mg package, see photo, mine is 1.5 a day, tell me how can someone cut the pill easily without crushing it?

Thank you, Athens! My father was on Sintrom for several years. He used to cut the pills too but managed to maintain INR in a range of 2.5. I don’t know if there is still availability of Sintrom in the market. I’ll check it out and let you know.

 

[ATHENS1964]

Thank you, Athens! My father was on Sintrom for several years. He used to cut the pills too but managed to maintain INR in a range of 2.5. I don’t know if there is still availability of Sintrom in the market. I’ll check it out and let you know.

There is sintrom available at 4mg, if the dose is 1mg-2mg-3mg it is easily cut
if the dose is 1.5 mg then it crumbles and the only way is the one I showed.
If you can't find it, let me know. I have everything in stock for 12 months.

 

[tom in MO]

You could do 2 mg one day and 1 mg the next. This works with warfarin, when my dosing was done by a clinic they had me doing different does on every other day, but I don't know anything about sintrom.

 

[ATHENS1964]

You could do 2 mg one day and 1 mg the next. This works with warfarin, when my dosing was done by a clinic they had me doing different does on every other day, but I don't know anything about sintrom.

Sintrom has a half-life at 7 hours, if I take 2 mg and the next 1 mg the inr will be yo yo,
I want to have stable doses from 1 mg to 2 mg is 100%