Endocarditis Round 2

[Larson2023]

Hi Guys

Ok, had my first valve replacement last July which was accompanied with my first case of Endo.

My recovery has been incredible and I have never been as fit in my entire life until last Wednesday when I fell apart again with the usual symptoms, back in hospital and yes have Endo Part 2.

The doctors came to see me this morning and said “we are so sorry this happened to you”, that obviously scared the life out of me and then they went to tell me how dangerous a redo surgical procedure would be! I was left thinking great job docs, very compassionate!

Any and all advice very welcome.

Take Care

[Hidden]

Hi, Sorry to see you've ended up in this situation with Endo. It's the one thing that strikes fear into me.

Sometimes compassion is a bit low on the medics priorities and they're very much a matter of fact. I've had valve surgery on three occasions, in my experience it wasn't so much how dangerous a redo was but, how good the previous surgery was, which they wouldn't know until they opened me up. My first surgery is coming up 30years ago and was a doddle to be honest. The second was effectively my choice as I went for a Tissue valve, but, there were unfortuntely complications, including Endo. The third surgery involved replacing/repairing the new Aortic and Mitral valves. Last week was the 10th Anniversay of that 3rd Op, and I'm still here, thankfully I've avoided Endo since, and both valves are doing well.

As Hidden says, just go with the flow.

Best wishes

[Larson2023 in reply to Hidden]

Thanks Heedio61

Appreciate the reply as you have responded to my earlier posts last year 😊 lovely that you take so much time responding to so many of us 🙏

[Larson2023]

thanks Mel

Appreciate that, lovely to hear you are well 😊

[Tutina]

Hi Mel glad to hear you are well. We have had a scary few weeks. My husband had endocarditis which caused damage to his replacement valve. Surgeon said it’s too risky to operate and yesterday basically said he could have 5 years left to live and eventually the condition will kill him. He has opted not to have the replacement and I respect his decision. He is managing on medication for increased heart beat, and breathlessness and surgeon is keeping a close eye on him. We have another appointment in 1 month. I’m struggling with how blunt the surgeon was with us I feel he basically sent him home to die. I’m absolutely distraught and don’t know how to carry on or who else to turn to. What can I do?

[Tutina]

Hi Mel

Thanks for your reply. I’ve just read your story wow you’re one exceptional guy! Similar to my husband they couldn’t find out what was wrong with him and kept saying he had an enlarged spleen. Then they discovered endocarditis after I told them about a tooth problem. I have just researched a PCI procedure. The surgeon said the endocarditis has damaged the tissue around the valve and it isn’t opening and closing properly, so why didn’t he suggest a PCI. My husband is high risk because he is 72 and has had tongue cancer which he is clear of now and recently had a chest infection which has left him with a cough. Apparently the radiotherapy causes mouth problems, so I think that’s why he is high risk. He is just not well at the moment and his quality of life is not good. He is not giving up as such, it’s me who is panicking. It’s in my nature I’m from an Italian family. We have another appointment next month so I will ask about the PCI procedure. Thanks again for your reply, and you carry on being as well as you are. I will keep in touch if that’s ok, it’s good to talk to someone with your experience. Take care Izzy.

[Yumz199725]

Ahh I'm so sorry to hear you have endocarditis again! 💔 Do they know why you got it twice x

[Larson2023 in reply to Yumz199725]

Hey, they think it a relapse as opposed to a new infection. Very strange as I was showing clear after the last treatment/surgery, it’s worrying how easy I have got it again with not gradual onset of symptoms, just bang, wiped out! My CRP straight up to 225 and I’m trending the right way now and back at 59, so the cocktail of IV antibiotics appears to be working and they really don’t want to operate which is a worry.

Thanks for the reply and hope you are well.

[Yumz199725 in reply to Larson2023]

Glad the antibiotics are helping sorry they won't operate x

[oyithomas77]

Hi Larson,Look we don't have any control of what happens next In our life's or what our destiny holds. I've had double valve replacement done 3 times and I'm still a live,

I'm 45 years of age and had my first one in 1992 it's been a tough journey but we every day right? No need to fear for the surgery as I said we don't know what happens next in our lives.

You've been through a lot bro, and going out like this God will not allow it trust me I know the fear and anxiety or going for your second surgery.

Don't worry man, Death knows you, coz you went toe to toe with him during your last heart surgery.

Don't fear brother God will walk with you during the surgery journey, you already know the way he will be walking the road with you and you leading the way.

Good luck bro.

[Larson2023 in reply to oyithomas77]

Thanks Oyitgomas77

Inspiring message would love a chat if you won’t mind, happy to share my number 😊

Cheees

[oyithomas77]

It's my pleasure Larson by the way my name is Steven. Keeping the experience to myself would be selfish of me coz I know it would be helpful to someone else. We all go through challenges in life so that you can be the help to someone else who is experiencing the exact same thing like you I will pray with you when you go for surgery keep me updated.