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
Written by
Larson2023
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I've had it twice, both flavours Bacterial and the much more rare Fungal. The first was treated with a replacement valve which was my second replacement valve, the second and more difficult to treat was with antifungal medication because it was too dangerous to replace the valve again so soon after only 6 months.
Just go with the flow and hopefully like me you will be here in 5 years time telling people how you were treated successfully and thankful for the NHS and hospital staff for their skill.
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?
I am really sorry to hear about your husband, it must be very stressful for both of you.
I can only give you my experiences regarding Endocarditis, a detailed explanation is on the thread linked below, just click on it and it will take you to the thread, scroll down and you will find a couple of posts from me, the long one is the one with my history.
You might have to be quick if you wish to read it, some people have complained about my responses so I might get banned and all of my posts removed.
My consultant told me to "Go home and enjoy your life, however long that may be".
There was no indication as to what that meant in terms of length, 5, 10, 15 or 20 years, I have no idea but the impression was not very long. I have always been aware that this will cause my death. I am still here and don't intend to depart anytime soon.
I deal with it by trying to remain fit, looking for things to do around the house and my wife booking holidays and theatre trips which gives us things to look forward to.
Try to encourage him to have the replacement operation or explore the alternatives with the consultant. There are ways to repair the valve or fit a TAVI valve if the current valve is suitable. Use the appointment to ask questions, write them down and don't be afraid to push the surgeon on why he thinks the dangers are too great.
Does your husband have a different condition that is complicating matters?
Another thing to do is contact the BHF nurses, a link to them is below, just scroll down and click on one, they should respond and give you great advice. I have also put the phone number below it. It is a freephone number so that may be a preferred option and is available from 9.00 - 5.00 weekdays.
If you need to talk more please don't hesitate to use the chat facility, I will send you a message so that all you have to do is click on the reply button.
I wish you good luck and don't let your husband give in just yet.
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.
I wish you well in finding a solution to your current situation.
Unfortunately I think my time on this forum will be at an end later today so probably I won't be around to help you. It appears that humour is the way to deal with a situation and not factual help.
If you don't see my name on this thread it will mean I have been banned for going against the group mentality.
Good luck and I hope things work out for you and your husband.
Best wishes.
Mel
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.
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.
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.
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.
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