Fungal Endocarditis

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Perrster

We got the bad news last evening that my mother-in-law has Fungal Endocarditis on her previously replaced bovine valve (AV, I think) and now it's affected both valves, of course.

She's been laid up at the hospital in Little Rock for almost a month and is in pretty bad shape right now as they can only continue to fight the infection. Apparently the medication they have her on has some real nasty side-effects and it sounds like her kidneys are now failing.

The surgeon called my wife last night and said although her mom looks ok, her chart is a mess. They cannot operate until the infection is under control. It may all be too late.

She somehow over-self-medicated on Antibiotics for the past year or so and all of the "good" bacteria is gone from her system.

She sounded like she was losing the battle so my wife is off to Arkansas tomorrow to deal with the situation.

Sorry for the gloomy doomyness of this, but there's always a lesson for someone out there.

#1. Don't move so darn far away from the immediate family that will eventually be responsible for your care.
#2. Be careful of antibiotics and always make sure any doctor knows your condition and what medications you're on

I have signed up with MedicAlert and think this is cheap insurance in case I get in a jam.

Has anyone heard of or experienced this severe heart disease?
 
Hi Perry, sorry about your MIL

Hi Perry, sorry about your MIL

That's a real shame about your mother-in-law, I'm so sorry. I hope that everything works out and they can get it under control.

I'm glad you have Medic Alert. Joe has the gold medallion necklace and a wallet card which I update when it's needed. His looks like the Bible on the head of a pin, because there's so much info there.

But I won't let him go anywhere without it!
 
Oh Perry!

Oh Perry!

So sad news for you and it must be so difficult to be living far away in a time of crisis!! My brother lived 5 minutes from us and still he felt he wasn't living close enough when things were really bad.

I do not wish to sound like the girl who has been there, done that constantly when it comes to heart disease, but I do have experience from fungal infections that go to the heart. A combo of fungus and bacteria is what sent my old heart over the edge but for me it was the myocardium rather than the valves that were infected. I have/had asthma and the drugs can easily give you fungus in the throat/airways and they thought it was local rather than systemic. To treat the systemic infection I got a drug called flucytosin which proved to be harder on the body than the actual disease. Darn adverse effects, I almost, literally, went completely bonkers!

I agree with you on antibiotics. It's nothing to mess around with on your own.
My prayers are with you and yours, many hugs and all my very best,

/Jessica
 
Hi Perry,

I send my prayers and thoughts to your mother-in-law and your family. I hope everything goes well for her with this battle.

Hey, I looked at medic alert, but ended up selecting a real nice gold medalion instead. I tis a wonderful jewelry piece, and I don't feel like a hospital patient wearing it.

I figured that the ER's always undo the shirt to check your heart etc when they are called, so.. The first thing they will see if my chest scar. Now if that isn't a clue that I have had my chest cracked open, I don't know what is. Thety will also see my medalion, which contains all my critial info on the back.

I also have a very detailed wallet card, keep a copy of the same card in my car visor, in case of an accident, (the Medical symble is clearly visable), and I keep another copy on the side of the refrigerator at home, in case my wife needs the information in a hurry.


It's off to the mountains for me tomorrow. Cristi and I will be snowmobliing over the next week. We'll spend a few days in and around Boston with the family, then it's up to Maine!

Keep us posted,

Rob
 
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Perry, I am so sorry to hear about your MIL. Please know that our thoughts and prayers will be with your family.
Is your wife alone over there in Little Rock? If she needs anything, just ask. I am a short 2 hour drive away.

Take care
 
Hi Perry,

I just read about your mother-in-law's health problems and the situation you and your wife are in.

I know it must be especially difficult for your wife, and no bed of roses for you either. I hope MIL makes a reasonably quick recovery from the infection and the surgeons can work their magic to restore her to a good state of health. (Then you can give her heck for moving so far away.)

In the meantime, please give your wife all the support she needs. It sounds like it's important for your MIL to have her daughter there now, and obviously your wife wants to be there for her. However, I can't imagine that your wife would want to be away from you and her home for too long. It must be really hard on her.

I hadn't thought about the medic alert yet. I know that's important if you're on Coumadin. Is it needed if you've had a bio-valve replacement?

Well, best wishes. You're family will be in my prayers.

Ron K
 
Hi Perry:

My thoughts and prayers are with your family. I am a survivor
of endocarditis. The disease struck me back in Sept 1999.
I have a mechanical mitral valve because of the disease.
I suppose they have her on IV to fight the infection. This
disease can easily destroy the valves. Hopefully they can
find a medication to help kill the infection. I know how the
disease can weaken the body.
If you need to know more just let me know!!


Judy
 
Dear Perrry - heart is with you and your wife. It is so difficult to lose Mother - she was the center of one's life for so very long. If your wife was close to her mother, it will take awhile for her to get over this. Looks like her Mother is in such very serious trouble, tho there are a couple things they may try (sulfa, for one). However, what is to be will be and it is not in your hands and never was. You can't feel guilty for moving away - most of us have done that. When we must go, we must and Mothers would not have it any other way. You have my prayers. Just be happy for the good times you have had together. She will want that and as a mother, I know it. God bless
 
Taks a meka (thank you very much)

Taks a meka (thank you very much)

Thank you all for your kind words for my mother-in-law, Donna.

UPDATE: my wife arrived at the hospital at 6AM today (St. Joseph's in Hot Springs vs. Little Rock) to meet with her doctors and find out what's going on. She hopes to have met with all of them by end of day as there will be few available come the weekend, for sure.

The truth is they really don't know exactly what is wrong with Donna! She's been there 4 weeks and is a rare case for them. My wife and Donna are actually hoping she can be released sometime soon to just go live out her life at her home. Surgery is too high-risk at this point. She may be able to have the anti-fungal treatment as an outpatient, although they're not sure if Medicare will cover that. One bag of the stuff bills for $900.00!!

The doctors are doing the best they can under the circumstances and even consulting with the Cleveland Clinic about her case.

Oddly enough, my wife noticed common sense things that were not being done for Donna, like the socks that help with leg swelling and other comfort things that the doctors agreed (only on my wife's queue) to do for Donna.

Donna is still pretty vibrant and will probably do ok for awhile on her own. Her neighbors will look in on her and my wife will have to go back when things go from bad to worse. There's no expectation of her ever getting better without the surgery.

Thanks again.

RonK: I think MedicAlert would work for anyone with a cardiac or other high-risk condition. The program keeps track of all contacts, docs, meds, allergies, conditions, etc. which are all immediately available in an emergency. Check out their website.
 
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Hi Perry

Hope things continue to progress positively for your MIL.

Here is a site I found with some basic information. Was particularly interested in this statement.

"The treatment of the patient with fungal endocarditis is different. In these patients, emergency operation is indicated even though the valve has not been destroyed nor the patient is in congestive heart failure. The reason for emergency operation is that ***antibiotic treatment rarely cures fungal infections*** in the heart and the fungus rapidly burrows into the heart muscle within days, making cure more difficult. Operation should not be delayed unless there is a contraindication to surgery. **Following operation, the appropriate antibiotic is continued**".

Not sure how accurate that is....but I would check it out with a specialist outside of Little Rock.


We will be praying for you and your family
Take care.

http://www.kaymed.com/medterms_ie.htm
 
Hey Gina,

I sent my wife off to Fartkansas with that very linked page of information! The docs are all dead set against any surgery at this point so she doesn't have many options.
 
Fungal myocarditis...

Fungal myocarditis...

If there's fungal myocarditis (which is what I got) surgery will be very hard and entail high risk whatever they choose to do. The inflamed heart muscle will make the patient high risk for any type of anaesthesia. Antibiotics does not cure fungus, in many cases it makes it worse. Whatever you do in this situation there's a high risk involved. But Perry, you might check with some other specialist to be sure if you or your wife does not feel safe with the care that is provided to Donna.

Sounds like a catch 22-situation; need surgery, yet cannot have it... Must be very frustrating. I'll keep you in my thoughts!

All my best,

/jessica :D
 
Update II

Update II

My wife is pretty close to information overload, but she handles it quite well. She has met with five doctors. While her mom's situation isn't fast improving they have been discussing her "options."

Donna will have to take the fungal antidote for the rest of her life (sounds like the $900 bag is available in a much less expensive pill form, but I doubt she can get them at Walmart).

Yeah Jessika, it is catch-22. She needs the surgery, but can't have it right now.

My wife learned that Cleveland Clinic is playing a key role in the diagnosis and is now the recommended facility for the surgery (should Donna decide to go that route). I wonder what that antidote would do to her INR should she get mechanical valves?

Donna's is doing ok considering the circumstances. Another option she is considering is to go home in a couple of weeks and live out her time as long as possible and not endure another surgery. (Her mother died during open heart surgery in Milwaukee some time ago!).

Very tough things to think about, but she's pretty strong-willed anyway.
 
Gosh Perry-

This is such a terrible situation, I cannot imagine the anguish your wife must feel. When the doctors are puzzled, it's scary. I do hope they can come up with an appropriate treatment for your poor MIL.

So glad that you're checking in here frequently while your wife is away, so we can keep an eye on you:p
 
Perry,

Whatever your mother in law decides to do, it's most important that she is happy or at least content with the decision, whether that will be no surgery and enjoy the comforts of her own home, or surgery with everything that will entail.

A few years ago my dearest heart friend made a drastic decision to take himself off the heart transplant waitinglist and just enjoy the time he had left. Which he did but he died only weeks later. Leaving him be; not trying to talk him out of it was the hardest thing I've ever had to do but he had decided. He said he was satisfied and we had to honour his decision.

Cleveland Clinic is good so she would be in good hands if she decides to go!
Still, the antifungal treatment alone is enough to make you have some 2nd thoughts about surgery if you have to be on it for life... I had severe adverse effects as I told you... I was on flucytosin and later I took pills with an antifungal agent which I just forgot the name of :rolleyes: ... go figure lol. What type of antifungal is she on?

I hope you don't find me gloomy but I am not entirely convinced all battled are supposed to be fought! Just take care of yourself, your wife and Donna alike and I hope that an impossible situation will resolve the best possible way.

Hugs,

/jessica
 
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One heck of a race!

One heck of a race!

Don't know if any of you are NASCAR fans, but the Daytona 500 was a thriller. Adding to it is the fact that Kurt Busch (97) finished 4th. He is also my wife's cousin (Donna's nephew).

She called from her mom's hospital room a couple times and said Donna was losing her voice yelling and the nurses and custodians were having a party in her room. Kurt had the lead for some time, then Jeff Gordon sneaked around him.

I think it was a good diversion for everyone, including me. I skipped the health club today and my heart rate was up there just watching that race.

Have a nice week, everybody.
 
97?

97?

Perry,

I don't know much about auto racing, but I am amazed that a 97 year old guy could finish 4th in the Daytona 500. The older drivers in NJ don't drive very fast at all!

Maybe I misunderstood something in your post.

Seriously though, I'm glad to hear that Donna is doing a little better and that she and your wife could host a party in her hospital room. I hope she continues to make good progress.

Also, thanks for the tip about MedicAlert.

Ron K.
 
(#97) is the way I should have posted it. That's his car number. I think NASCAR probably has an age limit. Actually, on the other end of the spectrum, NASCAR did rule against Kurt's younger brother who is only 18 or 19 years old and successfully raced Trucks last year. They ruled him out until he does turn 21.
 
Hi Perry,

I hope this post finds your Mother in law improving. I will keep Donna and your family in my thoughts and prayers. It is good that your wife is getting to spend some time with her (even it is at a hospital). Hopefully she will get to go home soon. Sometimes people recoup better at home in familiar surroundings.

We are dealing with the same long distance thing with my brother in law. He is in a North Carolina hospital in very serious condition. It is a 7 hour drive!! David is very concerned about not being able to get there if he takes a turn for the worse. Like your Mother in law - he is holding his own for now. He needs a liver transplant so it will be a long haul.

In times like these we have to rely on our faith to help us through. Never forget the Power of Prayer.

Take Care,

Tammy
 
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