Hi, I'm new here...

[centuryltd]

Hi,

My name is Steve and I'm new to all of this and thankful I've found this forum. A brief history, was sick off and on for 3 months, low grade fever, aches and pains, never bad enough to miss work. After 1 month went to the Dr., and was diagnosed with pneumonia in right lung was on antibiotics for 7 days. After 2 days right side of face became numb at times, CT scan showed a lesion of some sort. Dr. wanted an MRI right away, couldn't do it because of pacemaker wires from a pacemaker I had from 1991-1993 that they could not remove at the time. The pacemaker was there because of a radio frequency ablation that did not go well to treat Wolf Parkinson White syndrome. Dr. sent me to a neurologist for another CT scan, EEG, and ultrasound of the carotid arteries, all normal at that time, symptoms had also gone away and neurologist said I probably had a "complex migraine" and pronounced me fit and healthy. Later I learned those symptoms came from vegetaion that broke off of my aortic valve. Three weeks later my fever went way up, Dr. heard a murmer and blood cultures tested positive for bacteria. Was hospitalized and on IV antibiotics for 11 days before surgery to replace aortic valve damaged by infection, this was done 4/12/06. Also, the surgeon removed the old pacer wires that had grown into the heart muscle and arteries and repaired a hole between the lower chambers of the heart. Five days later my AV node failed and an external pacemaker was put in until I was off of the coumadin for 2 days and a permanent pacemaker could be put in. I've been out of the hospital for 6 days, getting stronger everyday (with the help of my wife). I'm on IV antibiotics for 4 more weeks (that my wife administers). I'm learning about INR levels and praying that the infection doesn't return. Thanks for listening and I hope to contribute in some way that will help others.

Thanks,
Steve

 

[pfsinger]

Hello Steve!
Welcome! I'm also new to the boards and am awaiting Pulmonary Valve Replacement (scheduled for July 14, 2006).
It sounds like you've had a rough time of it lately. I'm glad to know that you are doing better.
This forum has been so helpful to me in the short time I've been a posting member, and everyone is so supportive. You'll find that, too. You've definately come to the right place.

Take care of yourself!
Pamela

 

[Karlynn]

Welcome Steve! You have had one of the harder introductions to valve replacement. Did they tell you why they felt the infection set into the aortic valve? Did you have a bicuspid valve? Did it have stenosis? What type of valve did they put in? Since you are speaking about Coumadin, I'm assuming they put in a mechanical. St. Jude, On-X?

We are a very active community with lots of members and lots of experiences. You will find out esteemed member Al Lodwick of particular help since you are on Coumadin. He is an expert in the field of anticoagulation. He has his own clinic and his own website, that I highly recommend you take a look at and bookmark. www.warfarinfo.com I have had my St. Jude valve for over 14 years. It has been with Al's help and the people here that has given me incredible confidence in managing my own Coumadin. I home test my INR and do my own dosing. This is something you can considering doing as well. Home testing can be done right away. Self-dosing comes after you know how your body reacts to changes in dose. Hopefully you have been given accurate information on how to live with Coumadin. Quite often the medical field makes it sound much hard and much more restricting than it really is. We have two sayings here that are key to understanding Coumadin.

"Dose the diet, don't diet the dose." In otherwords eat what you want and have your dose adjusted accordingly.

"It's easier to replace blood cells than brain cells." It seems that more doctors fear bleeding than they do stroke. Those of us with mechanical valves look on it quite the opposite. Some Coumadin managers like to hold doses for high INR's. Some start to freak if they see a 4, stand back if they see a 5. Holding doses for INR's in this range will most likely cause you to go too low. We find that adjusting the weekly dose by 10 - 20% is much more effective and doesn't start you down the road of bouncing INRs. So just be on the lookout for signs that your warfarin manager doesn't have the knowledge they should. If there's a question - post it here!

Make yourself at home. Spend some time reading past posts - particularly in the Anti-coagulation forum. Ask any question or voice any concerns you have. I invite your wife to join us too. We have many loved ones who actively post here.

 

[Phyllis]

Welcome, Steve. You've been through a lot but hopefully things will all go smoothly now. This is the place to be- for your own questions (Karlynn has given you excellent places to start) and of course to help others as from your experience, you have a lot to offer.

 

[sue943]

Welcome Steve. I have been the endocarditis route, I also had vegetation break away and travel to my brain - I still have residue weakness in my left hand/arm from the stroke. Prior to the stroke I was also 'unwell' for about three months and worked throughout.

It is interesting to see how differently the two countries handle this illness, I was in hospital for about six weeks because of the antibiotics. They saved my surgery until the infection was cleared.

 

[Der Biermeister]

Welcome Steve
Your story makes me look like a piker - like "what am I complaining about?" But I did have a horror story of sorts

http://www.valvereplacement.com/forums/showthread.php?t=15381

but that was kind of unrelated to ongoing chronic heart problems. I look back on it now, and maybe it was a good thing this screwup happened to me when it did - otherwise I would have gone on for another few months, literally fat, dumb, and happy, but with a steadily declining heart.

Anyway, it sounds like you are finally on the right track! BTW, we both had AVRs on 4/12 -- so something in common. We can compare notes on our recovery progress.
Take care

 

[JimL]

Hi Steve and welcome! Some parts of your story sounded so familiar to me, but they seem to have been more on top of the situation in treating you than they were with me. I went to my GP several times, was diagnosed with various infections and given various antibiotics, when I really had congestive heart failure from a very narrow valve.

Can I ask a favor? If you find a good coumadin clinic in the Milwaukee area, please share that information. I was looking for one when I spent three weeks over there last summer, but the place I chose was quite barbaric. There must be a good clinic somewhere in the city that does a finger stick test instead of a veinous draw, and lets me know the results immediately instead of one week later.

 

[centuryltd]

Thanks

Thanks

Thanks to all those who have replied and made me feel welcome. To answer some questions from Karlynn, they don't know why the infection went to the aortic valve, there had been no indication prior that I had any valve problems, they identified the bacteria as something common to dental proceedures however I did not have any dental work done, or any dental problems prior to my infection. It makes me a little nervous about my next trip to the dentist for cleaning. A note about the timing of my surgery, the doctors felt they had cleared the infection from my system prior to surgery while at the same time they did not want to delay surgery too long because of the large vegetation moving around on the leaflet of the valve and the possibility that it might break free. I do have a St Jude valve and am very interested in home INR testing, I have yet to call the insurance company to see if the equipment can be covered. If not, when I save some money I'll buy it on my own because I can certainly see the advantage in home testing and being able to quickly change a dose. Thanks for the info Karlynn! To JimL I'll let you know when I find a good coumadin clinic here, I just went yesterday for my first blood draw since being released from the hospital. I have a picc line so they can draw blood right from there. To Der Biermeister, hope your recovery goes smoothly, keep us posted.

 

[twinmaker]

Welcome Steve! Glad you found us here on this site. Sounds like you've really been through "the mill" lately. Glad you're now on the road to recovery. I use to live in "your neck of the woods". My husband works for SC Johnson, and we lived in Racine for a couple of years. Wisconsin is beautiful! I've had two OHS and have had my St. Jude mechanical mitral valve for almost 25 years. I also have a defibrillator/pacemaker. I do my own INR testing and dosing at home and love it. It's because of the people on this site that I started doing that after being on Coumadin for almost 24 years! Anyway, we're happy to have you on board with us. LINDA

 

[Blanche]

Steve:
Welcome, welcome, welcome. In 1990, my husband, Al, had his mitral valve replaced because endocarditis, from dental work damaged, his valve. Before dental work, he is properly medicated and has had no further problems. He gets his teeth cleaned 3 times a year. He has also had dental surgery, crowns, periodontal work, root canal, and various other dental procedures with no problems, and always without stopping his anticoagulation.

I can see that you have many things to ponder. Please know that dental work for someone who had endocatditis and who is on anticoagulation therapy can be easily and safely handled.

Kind regards, and best wishes for your recovery,
Blanche

 

[Natanni]

Hello!!

My husband had endocarditis in July 05, due to the bacterium Strep Viridans, the bacteria normally found in the mouth, however he had no dental work/oral infections during the weeks/months prior to infection. The infection control team that evaluated Nathan at the Mayo said "any deep venous procedure lasting longer than 45 minutes" could have been responsible for his endo. He was being followed for aortic valve regurgitant since 1998 . He had his surgery in Sept 05 and began home INR testing in Oct 05. We are sort of newbies in the home testing dept, but couldn't imagine monitoring INR any other way. Welcome!! Ann

 

[Mary]

Steve,
You found a tough way to gain membership in this club!
Nevertheless I think you will be happy you're with us, since you can't undo what's all ready occurred.
I look forward to reading more of your posts.

 

[gadgetman]

Welcome Steve,

First, let me say that from your avatar you seem to be a little overdressed for this here site. We are a little (Mary is a LOT) more informal here.

Anyway, take that tie off, settle in with a good cup of coffee (or other drink of your liking), and start typing. Once you become a member of "da family" you can't get away. Oh yeah, remember to keep your feet up or take a few "walk breaks" while typing to us.

May God Bless,

Danny

 

[imhayley]

~Welcome~

~Welcome~

Hi Steve and Welcome! I hope you start feeling better soon. I have found this site to be the most informative and warm and cozy too!

 

[Kathleen]

Wpw

Wpw

Hi Steve and welcome,
I am also a abaltion attempt failure with WPW. Don't see that mentioned often on here. You have had quite a history and if you look for postiives at least you got it all out of the way in a matter of months. What is the prognosis on the WPW at this time. Take time to heal and rest since it may take a bit to get your legs under you again.
Kathleen