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rhino19

Quick brief rundown of our situation. Back in March my husband had radiation pills to kill an overactive Thyroid. A week after he took the pills he became extremely sick, high fever, chills etc. It seem to get better but over time the symptoms never went away. It was like clockwork every evening he would get chills, sweats, low grade fever, aches, pains, just plain misery. This went on for 2 months. We went back and forth to the doctor over 11 times. Everyone blamed the body adjusting to the Thyroid medicine. They ran blood test and cont. to tell us that the white blood count was fine no sign of infection. We got to the point were we felt we were nuts. We continued to call and complain. Finally we saw another GP because ours was not in the office. A little old man, nice as can be he had been around for a long time. Once again the whole story was told in repetition as it had been for over 2 months. One thing that trigger this old gentlemen was tiny reddish spots that would come and go on my husbands hands. He ordered a blood culture. The next day my husband was admitted into the hospital with a bacteria infection. Test proved that the infection had attacked his heart (endocardinitis) and had destroyed an already abnormal aortic valve (he was born with a heart murmer). This was only 2 weeks ago and now we are faced with an uphill battle. What we thought was just a routine flu or body adjusting to medication has turned into open heart surgery and an aortic valve replacement. This is just the real beginning of the road for us. Time indeed is of a factor but no surgery can be done until his pick line is taken out and the IV antibiotics are finished in mid July.

Since this is all new to me I am trying to be the rock. I have read and read and read till my eyes hurt. I am facing a couple of issues right now I hope someone can help with. First is the endocardinitis thing. I have read up on it but don't know of anyone personally who can give me some insight that has had it.
second is how to try and get my husband to realize that just because a few months ago he was healthy doesnt mean that today he is and this is something that needs to be done and done soon. I think the whole quickness of it all and the waiting game is making it hard to understand the importance of it.
Hopefully the last being this is a significant others forum: How do you cont. to put a smile on your face when you are just as scared as he is?
 
First off, take a big breath and relax. Your among friends and since joining, it just got a notch worse, now your family! In order for him to deal with the fear, he needs to do some studying. It appears you'll be doing that and then teaching him? Has he had any heart tests done and do you have copies of them? If not, get them. I didn't have endocarditis, I got a staph infection off of an IV line. but a few here have, so I'll let them address that, but I wanted to welcome you and set some ground work up to work with. :)

It's alright to be scared. If you weren't then I'd wonder about ya. You'll relax as you learn more. He's not going to kick the bucket immediately. Why should he when he can be miserable with a PICC line for a while? :) Slow down and lets get this all into perspective in digestible chunks.
 
Welcome to our family. We will help get you through this.

Just because your husband had endorcarditis doesn't mean he has to have surgery immediately. Every one is different and, until your husband has more tests to check the damage, you will not know the timeframe. In addition, even tho OHS is scary and serious, it is not the same as it was 20 years ago. Things have progressed to where the survival rate is very high and recovery is fairly quick for such an invasive surgery.

Find a really good cardiologist (both in experience and communication), have all the tests and then follow through depending on the outcome.

All will be well.
 
My husband went for a routine check up in Nov. the dr. heard a heart murm mur and sent him for a echo. They started running around like they were going to do emergency surgery right away because they found a anerysum in his aorta 6.4 plus a bad aorta valve. They admitted him right away and ran more test for 3 days then sent him home for 2 weeks before they did the surgery, talk about scared. They usually burst at 5cm or above. Surgery went well he had a st jude aorta valve and a dacron aorta graft and new root. He did have to ahve a pacemaker put in 3 days later because the surgery messed up his electrical system. It is a very hard thing to go through and to try to act calm and not scared for them when you are trying to cope with all your own fears about the situation yourself. Hang in there it does get easier and it will bring you closer if you keep comunicating. If you want to private message me feel free. The people on this sight are GREAT, they will help you through this.
 
I was just like you many, many years ago when my husband Joe was facing his second valve surgery. He went on to have a third and also had two lung surgeries which were according to him, much worse than open heart surgery.

Over the years, he developed other serious problems. He had rheumatic fever as a teenager and that caused all this misery.

Joe wasn't interested in computers, but I am, so I was the researcher and his information conduit.

I read, read, read and read some more. Every time he had an appt. (I went to all of them with him) and something came up which I didn't understand, I asked about it, and then I researched it on the Net. You would be amazed at how much I was able to learn.

This really is the only way to get over all the fears. The unknown is the worst thing to face. When you understand the mechanisms of what has happened to your husband, and what his options are, it will free you both emotionally.

What GeeBee says is true, he may not need surgery right away, or ever. There are some guidelines which cardiologists and surgeons use to determine when surgery is indicated. Sometimes, medication can stave off surgery for a long time.

So I urge you to learn everything you can about his problems. And I also urge you to be bold when asking questions of his doctors, if he doesn't want to ask for himself. You have to learn important lessons about being very proactive in making sure he has the most up to date and competent care possible. Research his doctors too. Ask everyone you know if they know about Dr. so-and-so. If you know any nurses, ask them too. Ask any medical techs you might know, ask even your dentist :) Learn who is best in the area where you live. Find out where the VERY best care is available if anything comes up that is beyond local care.

Be your husband's best friend and cheerleader. You might have to be an actress, but keep smiling, even though your own heart may be breaking and you feel very scared. If he's in the hospital, get dressed up to look nice, put on some makeup, fix your hair and smile, smile, smile.

If surgery does come up, help him to jump over the "surgery" part and see into the future when he will be feeling much better. Tell him you are partners and you will help him get through this, that he isn't alone, you will be right with him.

He may be feeling depressed and have a strong sense of loss due to what has happened to him. It came out of the blue, and it is a real nasty thing. If you see his depression getting the best of him, urge him to get some help for it. It surely is understandable to have that reaction.

Most of all, keep thinking positive thoughts. It is conceivable that the endocarditis will be gone, and the damage might not indicate surgery. But even if surgery has to happen, this site if filled with those who have gone before. It saw me through all the years of Joe's problems and saved my sanity. I also learned so, so much here and I was able to help Joe tremendously. There is a wealth of knowledge here. Here is a link to some research topics. Please read them all, even if it takes a long time.

AND-- Never give in, and never give up!

http://valvereplacement.com/forums/...1&pp=25&sort=lastpost&order=desc&daysprune=-1
 
You're definitely in the right place! Actually, some insight on bacterial endocarditis, since I have had a number of patients with the illness, and also one of my dearest friends.

My friend did get very ill; had to spend 3 weeks in a medically-induced coma on a ventilator to keep his physical demands at a minimum, then 12 weeks of IV antibiotics. After all was said and done, although the bacteria attacked both the mitral and tricuspid valves, he ended up without the need for OHS! He still has regular followups, and understands that he may some day need OHS.

It was long thought that bacterial endocarditis would become a thing of the past with the advent of antibiotics and the fact that most strep and staph infections were treated. However, we have seen an increase in bacterial endocarditis because of resistant infections, and because of the availability of immunosuppressant therapy for a variety of conditions, including rheumatoid arthritis, lupus, cancer, Crohn's disease, etc. When your husband received the radioactive iodine, his immune system took a hit, which made him susceptible.

Many of the physicians who are recent graduates have not seen the petechiae and splinter hemorrhages that can herald an infection, but it is one of the things "us old docs" were told to look for, and what your husband had. Sometimes experience pays! Other stuff can cause similar symptoms, including bone infections and adrenal insufficiency.

When my husband became ill, the cardiologist thought he had endocarditis. For him, the fever was due to his body's reaction to the rupture of his chordae and rapid onset of heart failure, and not to endocarditis. Young people are more likely to respond with a fever to non-infectious causes than older folks.

I agree with what everyone else has mentioned. I'm not going to lie to you, because it would do you a disservice. My husband's OHS was a terrifying experience for us both, but this forum has been wonderful and supportive. I would definitely speak with a counselor, and talk to as many cardiologists as it takes to get the information you need. You can get information on almost all the cardiothoracic surgeons from medical websites, even Google, and the folks at this forum know everyone as well. Find the most experienced surgeon you can. Get the support of your family. Get the support of your church or temple, if you have one. Make sure all of the stuff that you don't like to think about-wills, advance directives, living will, durable power of attorney, organ donor card, etc-is in place. We really didn't have all that stuff done, and standing in the ICU, signing papers for OHS and talking to the surgeon is not a good time to think about it.

I never underestimate the power of prayer, because I did a lot of it, and so did other people.

Hope this is helpful. Don't count your chickens before they're hatched, so to speak.

Super Hot in Idaho,
-Laura
 
Welcome to the VR community. Sorry for the circumstances but glad you found us. I didn't have endocardinitis but my need for OHS came out of no where as I did not have any history of heart issues, or any health problems for that matter. Then all of a sudden my GP noticed a new heart murmur during my annual check-up and next thing you know I'm scheduled for heart surgery. Natually my wife and I were pretty scared about it. Being scared is natural, but now that I've been through it I can honestly say it was not nearly as bad as I had feared. Think positive thoughts. Best wishes and good luck.
 
Do you know what type of bacteria caused the endocarditis? I had endocarditis in 2004 which was not from any medical or dental procedure. It just happened out of the blue!! It was caused by streptoccocus virdans (sp?) which is the bacteria in the mouth. It was considered sub-acute bacterial endocarditis (there are some bacteria which cause acute bacterial endocarditis which is even worse). After finally going into the ER after almost 2 weeks of having a fever and horrible headache, I was in the hospital 5 days and then had a PICC line for 4 weeks.

I was very lucky to have an excellent surgeon who was able to repair my mitral valve despite all the calcification which was most likely caused by the endocarditis.
 
Hi--I had sub acute bacterial endocarditis from wisdom teeth extraction. I can really relate to what your husband went through because I kept going back to the doctor for chills night sweats, respiratory congestion, and those little red spots that you spoke of. I was basically made to feel nuts and it wasn't until after it cleared up on its own and caused heart valve damage(mitral) that it was properly diagnosed. Did they figure out how your husband got it? The thing about mine was that after the angiogram they told me that I would need valve surgery within three months--and it took 16 years for me to finally need surgery, I was 34 at the time of my first replacement and 44(last summer) when I had it replaced again. So maybe your husband won't need it right away and you guys will have more time to deal with it. Hang in there--

Tiffany
 
scared. that's how most of our members got here. Yes, it's very scary and you have found folks who were/are just like you two. Ask us questions, read all you can, use the search button to get answers. write down what his dr tells you, then search it out here (or ask) so that you can understand what he/she has told you.

Welcome to VR. This site was created just for you. blessins..........
 
thanks for helping me.

thanks for helping me.

The information has been very useful. He did have the Streptoccous (sp?) that the doctors said came from his mouth and went directly to the heart. He had no dental procedures at all. The Disease Doctor says his best guess is that yes his immune system was down from the radiation pill for his thyroid and he was just very unlucky. His aortic valve has only two flaps already (born with heart mummur) the bacteria has attatched to those flaps and detioriated them worse then they were. They don't close so the blood is just backflowing. Yesterday he went to the doctor and they put him on some medicine to help prevent heart swelling from overaction. We have kinda excepted this surgery will happen but are real up in the air about valves and doctors. He is only in his 30's and a police officer so at this point it seems coumadin is out of the question, but we are still researching everything and learning more each day. Again thanks for the input. If anyone can relate to the job situation Iwould love to hear your thoughts.
 
Would you consider going to Chicago or Cleveland? I'm not sure what you have around you to chose from, but these two areas have the best surgeons around.
 
Chicago Doctors any recommended? I was told Dr McCarthy was at Northwestern I guess he is in Cleveland?
 
rhino19 said:
Chicago Doctors any recommended? I was told Dr McCarthy was at Northwestern I guess he is in Cleveland?
Click to expand...

I wish he was in Cleveland! Nope, he's at Northwestern. I would highly recommend him if it's a possibility for you.
 
rhino19 said:
Chicago Doctors any recommended? I was told Dr McCarthy was at Northwestern I guess he is in Cleveland?
Click to expand...

What Ross didn't tell you is that his Beloved Life-Saver, Dr. Patrick McCarthy, was "STOLEN" from Cleveland Clinic by Northwestern in Chicago (in his opinion :).

Note that Cleveland Clinic is the #1 rated Heart Hospital so you would be in good hands with Dr. McCarthy in Chicago or any of the top docs at CC.
 
I am not sure I can add much more advice to the words of wisdom already given but I wanted to say I know what you are going through and here if you have any questions especially from an SO perspective. My BF had endocarditis (same as your husband) last summer. We too had to go 6 mos. asking for a diagnosis only to get told to wash his hands and it would go away (no joke). We finally got our diagnosis because the vegetation on his valve leaflets broke off and caused a stroke. Unfortunately despite his young age and no knowledge of any heart murmurs his vegetation growth and valve damage was so bad that within a week of the stroke he had to go into emergency surgery to replace the mitral valve. Not much time to ponder...

I found this site the night before the surgery and learned all I could to help him understand what he would go through and all the survivors out there who made it through both old and young. This helped me and him a lot as I was able to ask the doctors very informed questions and we were able to make informed decisions. We went with the St. Jude mechanical valve and he is now on coumadin. Following surgery we spent 12 more weeks on antibiotics...oh and he had his surgery with his picc line in as it was an emergency so be sure they do a TEE to see how damaged the valve is as CHF came on suddenly for Ryan.

Couple things to keep in mind...there are a couple of threads on the anti-coagulation area regarding coumadin and cops, it seems to depend on the department. If you need support this forum is great...we are almost at our year mark and I still check daily as OHS is a life altering event but it is easier when you have great people to ask for advice and help who know what they are talking about. Good luck and best wishes.
Theresa
 
MandyMV said:
Couple things to keep in mind...there are a couple of threads on the anti-coagulation area regarding Coumadin and cops, it seems to depend on the department.
Click to expand...

This really should not be, but it is. There is no reason why a person couldn't continue to serve for their agency while on Coumadin. It's more antiquated thinking that a person will bleed to death. I'm sorry to say, but anything that an officer can encounter is likely going result in a medical emergency no matter what. People really have to be educated soon. There are too many agencies treating these people like they are disabled and worthless when it's simply not true.
 
Preach It Brother!

Preach It Brother!

I am one of those that works for a department that may not let me stay. It will depend on what they know about what valve I choose. It is really a shame. There is a dept one county north that knows how it works and will let me work when the surg. says i am good to go.:D Atlanta may push me out at a time when they can't afford to loose any cops. Their loss!:( I wish everyone in the "medical community" would figure out the facts.
SHEEPDOG:)
 
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