Finaly its going to happen friday the 23st

[Raoul]

little update again.
So after the first reset of the heart in the Hospital thay also gave me some new medication and send me home the 10th of januari.
The same evening the irregular heart rhythms started again en the same night i was back in the hospital.
The next day late afternoon they gave me a schock again and my heart did his job again.
They also stoped the other medication and started 2 diffirent ones.
The next day (12th) in the evening i could go home again.
Now everything still looks like its ok, i just feel realy tired and nauseous alot of times.
Maybe its the new medication...?
I can eat and drink so its not that bad i just dont feel hungy and not realy enjoy the taste of the food as i use too.
I have an aopintment with my own cardiologist next week, hopfuly she has some more information about the revalidation.

Greetings

Raoul

 

[tommyboy14]

The Nausea could also be the after effect of the anesthetic. Good to hear you are back home now. Hope that the new medication is helping. Did they put you an Amediorone?

 

[Raoul]

Yes, after the first irregular heart rhythms they started amiodaron. I had to take it 3 times a day for the first two weeks and after that 1 time a day. But two days later it started again. Now they give me Flecainideacetaat sendoz and Verapamil. Hope it will do its work...

 

[tommyboy14]

I am not familiar with those medicines. I also had Afib after my valve surgery and was put on a six week course of Amiodaron. I was fine with it, but the pharmacists explicitly warned about some of the side effects you mentioned.

I hope that these meds work now and I will keep my fingers crossed that you get better soon.

 

[Survived03]

I can eat and drink so its not that bad i just dont feel hungy and not realy enjoy the taste of the food as i use too

Rauol, this too should eventually go away. I had the same issue for a couple of weeks or so after surgery. I missed out on some very tasty meals that were dropped off by neighbors and friends. Hang in there.

 

[pellicle]

Amiodaron

dunno if you've looked it up, but I guess that its one of those drugs which is a last resort and you don't want to be on it long (unless you have to be on it long)

from Amiodarone - Wikipedia

Common side effects include feeling tired, tremor, nausea, and constipation.[4] As amiodarone can have serious side effects, it is mainly recommended only for significant ventricular arrhythmias.[4] Serious side effects include lung toxicity such as interstitial pneumonitis, liver problems, heart arrhythmias, vision problems, thyroid problems, and death.[4] If taken during pregnancy or breastfeeding it can cause problems in the fetus.[4] It is a class III antiarrhythmic medication.[4] It works partly by increasing the time before a heart cell can contract again.[4]​

​

Amiodarone was first made in 1961 and came into medical use in 1962 for chest pain believed to be related to the heart.[6] It was pulled from the market in 1967 due to side effects.[7] In 1974 it was found to be useful for arrhythmias and reintroduced.[7] It is on the World Health Organization's List of Essential Medicines.[8] It is available as a generic medication.[4] In 2020, it was the 198th most commonly prescribed medication in the United States, with more than 2 million prescriptions.[9][10]​

this last bit led me down this quick rabbit hole

https://clincalc.com/DrugStats/Top200Drugs.aspx
warfarin #58 and metoprolol #6

\o/ (and the crowd goes wild)

 

[Raoul]

Here is my update for the one that is interested
After my second heart rhythms it all got well and i did not had to go back to the hospital.
During my revalidation i still felt tired and lightheaded, but not as bad that i did not could function normaly.
But after my checkup after 6 weeks (echo) they saw i small leakage in my homograft.
I felt terrible with that news but the cardiologist said it was a mild leakage and even that it should not been there that soon after my operation i should not worry about it.
Afcourse i did worry and asked if she could talk with the surgeon about is, since it was the Ross procedure and she did not had alot of experience with it.
So she had contact with the hospital that did the surgery and showed them the echo they wanted to do more test to see if they could find out what is the reason of the leakage.
So i had a special kind of CT scan (where they also checked my chalck) and a they did a esophageal ultrasound.
Finaly after 3/4 mounths they decided that they think i needed a new operation....
I was devastadet with that news, just recoverd from my frist one and now again a new operation....
First one i did not know what to expect but now i knew all the horrible pains/feelings and experiences that will come again.
But also a little happy that they did not want me to walk around with a leakage that needs to be checked every time, that would give me alot of stress and insecurity in the future.
So they planed me in on friday the 23st of june (exactly 6 mounths after my first operation, friday the 23st of december...).
This time everything went diffirent then the other time.\
Now i can just remeber waking up on tuesday 27th of june.
Apparently the operation was a lot harder then they expected, they found out that i had a bad case of endocarditis and that destroyed my heartvalve and even worse it destroyed my new aortic prosthesis. So my aortic ripped open during the operation.
Finaly the operation was almost 10 hours where at the end i had a epileptic seizure.
That night i had another epileptic seizure so they had to tie me up to the bed so i would not harm myself.
The other days i was awake but i can not remeber anything, seems that a some kind of delirium.
From tuesdaynight i remember everything again.
They fixed my aortic prothese and gave me a new valve (biological).
Had to stay there 2 weeks and had antiobiotics for 6 weeks with a drip that i could carry at home.
Now its two mounths ago, i feel mutch better than after the fist operation, i am back at the gym already (light sessions) and able to do all my normal stuff again.
The revalidation from the second operation is whay better than the first, less pain and more energy....

Sorry for the long story and hopfuly it is readable.....
I stayed 2 weeks in the hospital,

 

[Survived03]

Holy smokes Raul. You have been having a challenging time. Glad to hear you have this behind you. I can imagine what must have been through your mind. Thanks for the update and stay well.

 

[pellicle]

Hey mate

Apparently the operation was a lot harder then they expected, they found out that i had a bad case of endocarditis and that destroyed my heartvalve and even worse it destroyed my new aortic prosthesis.

this explains a lot of your history. Surgery to replace the infected tissue is the only way forward. However you earlier wrote "they saw i small leakage in my homograft." which isn't actually a prosthesis (because its not manufactured) and is a type of transplant. The prosthetic valves are either mechanical or bio-prosthetic:

Theses are not living tissue (as your homograft would likely be).

Not that this changes the underlying issues you suffered, but it does lead me to ask "what did they replace it with?", I ask this because your bio (about section) says "getting the ross procedure".

So if you don't mind me asking:

1. did you get the ross procedure and
2. what valve did they put in now?
3. how old are you (not in your bio)

Be kind to yourself with recovery, take it easy and look after yourself, having had some experience with infection (not quite what you had) I understand how draining this all is.

Best wishes

 

[Chuck C]

Thanks for the update Raoul.

What a roller coaster ride. Really sorry to hear that you had to go through another OHS and had all the other issues.

Your detailed update will benefit other patients and we appreciate you taking the time to share.

Question: After your first surgery, the Ross, when you came down with a high fever, you indicated that they assumed that it must be your body attacking the foreign tissue from your donor pulmonary valve. Did they consider that it could have been an endocarditis infection at that time?

 

[Raoul]

Hey mate


this explains a lot of your history. Surgery to replace the infected tissue is the only way forward. However you earlier wrote "they saw i small leakage in my homograft." which isn't actually a prosthesis (because its not manufactured) and is a type of transplant. The prosthetic valves are either mechanical or bio-prosthetic:
View attachment 889550

Theses are not living tissue (as your homograft would likely be).

Not that this changes the underlying issues you suffered, but it does lead me to ask "what did they replace it with?", I ask this because your bio (about section) says "getting the ross procedure".

So if you don't mind me asking:

1. did you get the ross procedure and
2. what valve did they put in now?
3. how old are you (not in your bio)

Be kind to yourself with recovery, take it easy and look after yourself, having had some experience with infection (not quite what you had) I understand how draining this all is.

Best wishes

Hi, thank you for your reply and i will try to aswhere all your questions.
I had the ross procedure the first operation, now they romoved my autograft, not my homograft (sorry i had written it wrong in my other post) and replaced it with a biological (pig) valve.
I am 46 years old.
So not my homograft but autograft is replaced (aortic valve), my homograft (donor) is still working as it should.
The aneurysma that they had replaced with some kind of prostetic material was completly destroyd because of the invection.....

 

[Raoul]

Thanks for the update Raoul.

What a roller coaster ride. Really sorry to hear that you had to go through another OHS and had all the other issues.

Your detailed update will benefit other patients and we appreciate you taking the time to share.

Question: After your first surgery, the Ross, when you came down with a high fever, you indicated that they assumed that it must be your body attacking the foreign tissue from your donor pulmonary valve. Did they consider that it could have been an endocarditis infection at that time?

That is a great question and i asked it many many times.
My surgeon sad that it is impossible to have that long of a fever for a donar valve.
He talked about this with the nurses and told them never to let a patient with that complanes without any farther investigation.
But he also sad that it was strange that my fever went away after 3/4 weeks.
Also when the cardiologist saw the leakage she did a bloodtest testing for endacorditis and it was negetive. Even directly after my second operation it took one week to finaly find out wich bacteria caused the invection because all my bloodwork came out negetive. They finaly used a biopt from the valve that was destroyed to find out what it was.
Now i have to take a small dosis of antibiotices for the rest of my life.

 

[pellicle]

I had the ross procedure the first operation

that's what I was afraid you were going to say

 

[pellicle]

Now i have to take a small dosis of antibiotices for the rest of my life.

I had to take 500mg of amoxicillin 3 times a day and I did so for 10 years after this:
https://www.valvereplacement.org/th...elings-some-may-find-images-disturbing.42314/

 

[Raoul]

I had to take 500mg of amoxicillin 3 times a day and I did so for 10 years after this:
https://www.valvereplacement.org/th...elings-some-may-find-images-disturbing.42314/

i have to take the same but twice a day

 

[tommyboy14]

Hi Raoul,

I am so very sorry to hear this. Unfortunately endocarditis is a serious, but small risk, in any heart valve operation. The second operation sounds incredibly challenging and your surgeon must be excellent to have performed it successfully. I will keep my fingers crossed for you so that you will not have these issues again when for a long time.

I will also hope for you that by the time you may need to do a redo (you are still young), TAVI will have advanced a bit so those solutions will be longer lasting by then.

Best of luck with your ongoing recovery.

Tommy

 

[Raoul]

Hi Raoul,

I am so very sorry to hear this. Unfortunately endocarditis is a serious, but small risk, in any heart valve operation. The second operation sounds incredibly challenging and your surgeon must be excellent to have performed it successfully. I will keep my fingers crossed for you so that you will not have these issues again when for a long time.

I will also hope for you that by the time you may need to do a redo (you are still young), TAVI will have advanced a bit so those solutions will be longer lasting by then.

Best of luck with your ongoing recovery.

Tommy

Thank you so mutch!!