Endocarditis confirmed

[Randy & Robyn]

One of my cultures from nearly a month ago finally grew. My cardiologist and infectious disease doctor were both absolutely shocked when the bacteria was identified. Acute brucellosis, a very rare form of the infection. We even get to have a visit from the cdc since they will be doing an investigation to trace where I could have contracted it. I will also have my case published in the medical journals. What a price for fame.

Brucellosis is prevalent in Mexico and South America and primarily spread through unpasteurized dairy products. It is virtually unheard of in this part of the United States. The government even fears its use as a biological weapon.

So now I am on a regimen of three antibiotics. Two are oral: doxycycline and ofloxacin. The other is intravenous: gentamycin. In two weeks they replace the intravenous antibiotic with another oral one. It is highly likely I will be on them for the next few years since this infection has a very high incidence of recurrence.

It is my understanding that I may have no choice but to receive a homograft. The fact that I will be on such potent antibiotics long term would complicate coumadin management. Also, homografts would be the most resistant to any recurrent infections.

My infectious disease doctor is recommending having valve replacement surgery before the end of the year. I have already decided I am going to wait to have the surgery until early in January. Might as well enjoy the holidays. You never know when it will be your last.

Randy

[geebee]

Randy,

I am sorry to hear this news. I was hoping you had gotten through all this without endocarditis but I guess the problems had to come from somewhere.

Tough way to get famous.;)

Try to enjoy the holidays and I will pray for your complete recovery.

[hensylee]

brucellosis? Well, I'll be. There's an occasional case around here, but it's always in the bovine population! What a blow for you. I am sure you'd just as soon stay out of the cdc and the magazines. Please keep us posted. Prayers for your complete recovery of this.

[Ross]

Randy why you gotta go and be all different and stuff and stuff?

My God, I'm thinking they need to design a valve just for you! I'll be kicking up the prayers a few notches too. I'm not a homograft man, but if it's all you have for a choice, then I guess I have to be for it huh? Lets just ask that this be a good one, no bumps, and it lasts forever. ;)

[Natanni]

I am stunned as all the rest!

Here I was thinking with your initial cultures that you were almost certainly in the clear :confused: Did they find it odd that it took so darn long for your cultures to come out postitive?

You have to do what is best for your heart now. We had heard that homografts were the best choice post endo, but Nathan wasn't a candidate anatomy wise. When Nathan had endocarditis, he had a team of 8 docs, each of them going over him backwards, fowards and inside out. They did CT scans, MRIs, sputum cultures, dental exams, detailed history of where we traveled with everything he ate while vacationing 3 months prior. They will get do their best to get to the bottom of it.

Wishing you the best for the holidays, and keep us posted (even if we will read about it in published print :) )

[Sherry]

Randy, my thoughts and prayers are with you, friend.

[Phyllis]

Randy,
So sorry to hear this news, but I hope that you feel well enough to enjoy the holidays and then take care of this and be on the way to an uneventful recovery-you deserve a change in luck!

[jkn2kids]

Randy-
Sorry to hear about all of your trouble:( :( . I hope they get things straightened out as soon as possible!!! Good luck!!

[Karlynn]

So sorry to hear about the endocarditis. But then on the other hand, I'm glad that it finally reared it's ugly head. I would have hated to see you go through another surgery and have a valve go bad due to an unrecognized infection.

You will be in my prayers.

[PapaHappyStar]

One of my cultures from nearly a month ago finally grew. My cardiologist and infectious disease doctor were both absolutely shocked when the bacteria was identified. Acute brucellosis, a very rare form of the infection. We even get to have a visit from the cdc since they will be doing an investigation to trace where I could have contracted it. I will also have my case published in the medical journals. What a price for fame.

Brucellosis is prevalent in Mexico and South America and primarily spread through unpasteurized dairy products. It is virtually unheard of in this part of the United States. The government even fears its use as a biological weapon.

So now I am on a regimen of three antibiotics. Two are oral: doxycycline and ofloxacin. The other is intravenous: gentamycin. In two weeks they replace the intravenous antibiotic with another oral one. It is highly likely I will be on them for the next few years since this infection has a very high incidence of recurrence.

It is my understanding that I may have no choice but to receive a homograft. The fact that I will be on such potent antibiotics long term would complicate coumadin management. Also, homografts would be the most resistant to any recurrent infections.

My infectious disease doctor is recommending having valve replacement surgery before the end of the year. I have already decided I am going to wait to have the surgery until early in January. Might as well enjoy the holidays. You never know when it will be your last.

Randy

How about a Ross Procedure? Homografts last longer in the pulmonary position for people around our age -- probably offers the same protection against endocarditis w/o coumadin.

Hope you dont get too discouraged with this whole thing -- I think much of the battle in getting well again is in the mind.

I think this thread may have some good pointers for you:
http://valvereplacement.com/forums/showthread.php?t=13108

This guy also has a case of active endocarditis and two failed surgeries in the past year.

All the best -- dont forget we're pulling for you, infact count on it...

Burair

[Superbob]

Randy,

I'm sure this isn't the way you would have chosen to be written up, but keep your spirits up and enjoy the holidays. Best thoughts and prayers are headed your way.

Bob

[knightfan2691]

Wow.

What a way to become famous....

Very sorry about the news, Randy. Thoughts/prayers coming your way....


Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

[OldManEmu]

Randy I was most surprised reading this. I didn't know Brucellosis was associated with endocarditis, I had only heard of it as a tropical climate cattle disease. I can see why the CDC is eager to trace back how you came in contact with it, the part of the US you come from doesn't strike me as tropical. :confused: My endocarditis was caused by boring old Strep. Are they intending to operate while you still have active endocarditis? I was under the belief that they only operated on active endocarditis in life or death type conditions due to the risk of reinfection of the new valve. I had to be cleared by the infectious diseases doctors before the surgeon would operate. :)

[ClickerTicker]

I was under the belief that they only operated on active endocarditis in life or death type conditions due to the risk of reinfection of the new valve.
I can't speak for the life or death bit, but they certainly operated on me almost immediately after endocarditis was confirmed. I was due to have my mitral valve repaired a few weeks later, but the op was brought forward and I ended up with a replacement rather than a repair as my valve was already too badly eaten away to be repaired.
I was then on mostly IV antibiotics for a further six weeks or so:(. Yes, they do play havoc with your INR - and also with your appetite (great way to lose weight:rolleyes: ).
You may want to feel a bit sorry for the nurses though - from what I remember, the gentamycin came in a deep red coloured concentrate that had to be injected into an IV bag, if they spilt any it stained everything it touched:eek:
Anyway, best of luck... my episode was three years ago and I'm still going strong!

[Nancy]

Oh Randy-

What a shock. I am so sorry you have to go through this. Good thing your doctors pursued this aggressively. You'll be in my thoughts for the end of these problems for you.

[bani]

Randy,

Your golden (spiritual) heart will always be intact. In fact, it might be shining more brightly right now than ever.

Many blessings.

[liza]

Randy,
I'm so sorry to hear that. :( When they were working me up for being so sick (which ended up being endocarditis), their number one differential was brucellosis. Their reason for that was mainly because I am a veterinary student and had worked with cows in the veterinary hospital. I thought it was quite silly of them to think that, but it appears it does happen. I'm so sorry it has to be you! My cultures always came back negative, so I have no idea what caused my endocarditis. Let us know when they have figured out how you contracted it. From my vet preventive medicine classes, I have learned that brucellosis is pretty much eradicated from the United States. What a shock! I'm so sorry to hear this!!

Liza

[EVELYN]

Hi R and R

I am very very sorry to hear this news......You'll definitely be in my prayers.

Enjoy those holidays.....wishing you the best.

Evelyn

[Debster]

Hi Randy! How lame...but I am so glad they are getting to the bottom of things...will keep you in prayer...Debbie

[gijanet]

I hope that the DPH has not quarantined you and your house on top of everything else. :D Katie's valve repair didn't hold up either........both times, so we did end up with the mechanical, but we didn't have the endocarditis to worry about. We did have the deep tissue culture come back positive for staph (had her chest open for three days post-op) and had to do the cocktail of gentomycin, vancomycin, and keflex. The gentomycin is the one that is so rough on the veins..........at least in little kids. I do hope you can get off of that one soon. YOu are definitely in our prayers. Good luck and keep us posted. Many hugs. J.

[Marguerite53]

Just wanted to wish you well. I'm sorry that your news is harsh but at least, being famous and all ;) you are undoubtedly getting the best attention! I, too, am glad that they were stubborn enough to dig deep and be patient so as to truly find what your problem stemmed from.

Good luck on your upcoming journey! Drink in all the holiday spirit -- that will do your heart good!!

Best wishes! Marguerite

[Kate]

Dear Randy,
When I saw the title of your thread in "New Posts" my heart just sank. I'm so sorry. It is hard to know what else to say except that you are in my thoughts and prayers. Take care, Kate

[Sagebrush]

Like Liza I knew cattle got it and Elk too but I had no idea humans could contract it. Wishing you a speedy recovery !!!

[joanne6]

Randy,
Sorry about the endocarditis but glad they know what is wrong and can work on fixing you. The may be a little larger bump in the road than expected but you will get over it and get on with your life. You will apparently be getting a lot of attention in the meantime. Let us know when you are published.
You know that everyone here is a support for you. We can't go through the treatment for you but we will all be keeping up with your progress and praying for your speedy recovery.
Joanne

[Georgia]

Randy, this really sucks. I'm so sorry that you've had such bad news and need to have another surgery. You're in my prayers and thoughts.

I'll bet they're worried about the brucellosis in Wisconsin - I believe it causes spontaneous abortion in cows. Not good for the dairy industry.

Best of luck - and live it up as much as you can for the Christmas season.

[KristiinSD]

but at least you know what is going on...I am hopeful that things will go better for you soon. Take care!

Kristi
mr surgery 11/30

[Randy & Robyn]

Thank you all so very much for your heartfelt responses. It means a great deal to us. This is not an easy time but, right now, I am just grateful that I feel fine and can enjoy the holidays. My doctors are even amazed that I have no sickness or symptoms of any kind, not even a low-grade fever anymore. I'm even doing a slow 30-minute jog on the treadmill everyday. Apparently, this is usually a very aggressive bug, especially when it develops into endocarditis.

Just filled my prescription today for the third antibiotic, ofloxacin. My co-pay came to $106.00 for a one-month supply! :eek: And our insurance picked up the tab for 2/3 of the cost!!! :eek: :eek: I will be asking my doctor next week if I will be on this specific antibiotic long term and, if so, if there is a more economical alternative.

I'll keep you all informed as the saga continues...

Randy

[Linda]

Dear Randy,
We're so sorry to hear your news, but as everyone else has said, thank goodness they found out what's wrong and they have a plan. Our thoughts and prayers are with you and your family and we pray for an uneventful and absolutely boring recovery!
Linda & Jeff

[Lynlw]

and hopefully you will be able to find a cheaper prescription, Idon't know if they have a generic form of the oflaxcin. I am happy that you are feeling better tho. I rember when Justin had BE, it really wiped him out. speaking of copays, it was so frustrating, we had bc/bs and Justin was in the hospital for the first week of his BE w/ the picline for gento and vanco, he actually had to stay in an extra few days because insurance had no problem paying for everything inpatient, but when he could go home they didn't want to cover the IV meds , but did cover the nurse to come out once a week. it took days of us, the socail worker and even Justin's pc to get the insurance company to cover it (we couldn't afford it) even tho we kept trying to get them understand that just 2 extra days in the hospital, w/ the card, infectous disease and ped checking him cost more to them than the 5 weeks of IVs at home, I just can't understand their logic sometimes, they never did cover everything , but it got down to an amount we could pay off in a year,
I'll keep you in my prayers, lyn www.caringbridge.org/nj/justinw