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hoodie978

hoodie978

VR.org Supporter
Supporting Member
Joined
Jun 14, 2008
Messages
22
Location
Modesto, California
It is a complete shock for me to back on here writing this now. 15 months ago my then boyfriend, now husband, was undergoing his second open heart surgery for his congenital bicuspid aortic valve aneurysm. We went to Dr Miller at Stanford, who is an amazing, wonderful doctor.Jon recovered beautifully. We married, bought a new home, and were happy and overjoyed to start our life together as man and wife.

Thursday night Jon developed a fever, with body aches. I couldnt break the fever with Tylenol and Advil combo. The next day I went to work, called him at 930, he still had a fever, I insisted he go to the doctor. Hes prescribed Tamiflu and sent home. I come from work to find him still febrile, not drinking, just lying there. I called off the following day to stay home and take care of him. Saturday night hes still with fever and not drinking. I take him to the ER of the hospital where I work...and guess what hes septic, has platelets of 70, positive blood and urine cultures, and on and on. Hes admitted to my hospital and I got him transferred back to Stanford for....ENDOCARDITIS. Where hes currently waiting to find out if he gets the pleasure of a 3rd open heart surgery.

Hes on 5 antibiotics and still spiking 103 degree fevers. They saw something on the valve, but theyre not saying vegetation at this time. We will know tomorrow. I guess last year wasnt enough. Finding a lemon sized aneurysm on 6 inches of his aorta, waiting 2 months for surgery, fighting with the insurance company, and who can forget the 22 combined hours of two surgeries in one day, 52 off the heart of lung machine, and only 1 code.
We went into this year trying to have a baby, now we get to celebrate our 5 month wedding anniversary(today) with him in the hospital, waiting to hear full results of the CT and echo. Praying that they wont say surgery, but knowing that they will.

And best yet, he got the sepsis from having his nose cauterized from a chronic nosebleed. A little side effect from the Coumadin. And yes, he was on antibiotics for the procedure.

15 months ago I came to this site wide eyed, scared to death, and anxious. Now Im just mad.


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I'd be angry as well... very angry and scared. So sorry for you both to go through this. As a reference, my dad had the St Jude valve and 2 years ago also got endocarditis, needed his 4th surgery and is doing very well today... at 82 !! Hang in there.
 
First of all, congratulations on your marriage. After all you two have been through, I know that was a welcomed bright spot. We all get it that what you are going through sucks. Sorry, there is just no other way to say it. Some of us just have a harder time than others. No one knows why. But, your husband is alive! That is what is most important and you need to keep focused on that. He will get through whatever is coming his way this time around. He is young and that is a big, big plus. You can still have a baby, it just will be a little longer than you had originally planned. That's ok. You both need to try and stay positive and move forward with this. He will recover much better being positive and looking forward than lying there in anger.

Maybe you should ask his Dr.'s for a referrel to a psychologist who specilizes in health issues to talk to. A couple of sessions would do you (and him as well) a lot of good.

Best of luck to the two of you. I hope that you get good news that the valve he has can be saved, but if it can't, it's not the end of the world. Please keep us posted about how he is doing. I'll keep you in my thoughts.

Kim
 
I will say some prayers that there isn't any vegetation and that the endocarditis can be treated aggressively and eradicated. Please keep us informed about what happens.
 
And why not be mad? You're hurting and he is fighting for his life again. While you do that I will be praying for you.
 
Jodie, Your anger is understandable by just about everyone here because we have felt it ourselves. As you probably have been told by now, one is at greater risk of contracting endocarditis after heart surgery. Jon may have contracted it from the treatment you mentioned but it can also result from brushing one's teeth. Hopefully, this episode will pass without the need for more surgery but regardless, we hear you and are happy to offer what information and comfort we can.

Larry
 
I am praying that they get a hold of the sepsis quickly, and his body responds well to the antibiotics. You will know more once you get the echo results confirmed. Sepsis is a very serious matter, please know I am thinking of you. I would be scared and upset as well. Be his advocate, stay strong,ask alot of questions, stay informed. I have worked in ICU over 14 years if I can help you in anyway please PM me.

Flowergal
 
A good infectious disease doc will throw everything he has in his arsenal at the infection. I was staph infected from and IV line right after my AVR. My temp spiked at 106F and they called my family in and told them I wasn't going to make it. If not for my wife, I probably wouldn't have. They gave up and she did not. She got the best possible infectious disease man she could find and I mean to tell you, I was on, if I remember right, about 8 different antibiotics. Darned if that man didn't keep the new valve from being infected. It's no fun for anyone and it's perfectly fine to be angry. Were here to vent to when you need us.
 
Joe had the same experience as Ross. Got an excellent Infectious Disease doctor and he got him on the exact right medications for a long time, maybe two months or more, but it worked and when he was finally declared out of the woods, it was a BIG relief. Those guys are fantastic. I told Joe's doctor that I thought of him as the body's fireman. He put out all the fires of infection.
 
I agree with the above posts. Infectious disease doctor is a great idea and he will need you to advocate for him. I would be mad too. Prayers for both of you.
 
You have EVERY RIGHT to be angry and scared! That's one of the reasons for this forum. TO VENT!!

Both of you will be in my thoughts and prayers. Please try and stay strong.
 
Please keep us updated how he is doing.
This a very difficult time for you both, still newlyweds, but you'll have such a sweet celebration when he recovers. Keep thinking all postive thoughts and come here when you need a boost of encouragement.
 
You guys have been through so much already I don't blame you for feeling the way you do. Jon has already proven (twice) that he is a tough customer and Im sure if the doctors say surgery he will dig deep and face it head on. He has ALOT to live for !

You know that this place is a great resource for information, experience, and personal support. And if venting helps you, even just for a little while, then you should put it all out there. Use the collective shoulder of this forum to lean on.

I'll say a prayer for you both.....
 
I'm very sorry to read this and am, probably one more of many here, hoping for the best. Hang in there.
 
It is normal to get angry ... do vent it out, but do not let it drain you. You need to stay strong and be an advocatre for your husband. Will keep you both in my prayers. Keep us posted.
 
This isnot a happy time for anyone to get endocarditis
and my thoughts and prayers go out to both of you
with a positive (hug) the valve has good news
GodBless
 
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