In a major panic

[CCRN]

Al,
What has been your experience with death rates for a major bleed?
What has been yor experience with deaths from stroke?
Do you have any current studies on what these risk are?
Are "Clot busting" drugs improving the statistics on strokes?
What is the definition of "Long term warfarin" use?
I'm having some difficulty understand some studies, because they seem
to come to exact conclusion, while using vague terms. I appreciate your
expertise.

Hello,

I am new as I have just discovered this site was available. My bipcuspid valve was discovered during a routine physical exam while I was in my early thirties. I was informed I was "fine" after the echo and I didn't need to see a cardiologist unless I had shortness of breath or dizziness. I am a RN and work in a specialized cardio-thoracic operating room. I began workin in this exclusive CT environment 3 yrs ago. I noticed a number of patients also had a BAV and, at my age, were returning for a second valve replacement. I asked one of the surgeons about my situation and he was shocked I had not had serial echos for evaluation. I began these evaluations in 2003 and my peak gradient has increased from 51 to 85 over three years. This week I was told statistically I was 18 to 24 months away from heart failure and refered to the same surgeon who told me to get the echos. What a freaking nightmare! I want to scream and I'm a health professional. I've taken care of hundreds of people like me intraoperatively and post-op. I have significant anxiety over valve choice as I am still in that category of patient that the mechanical valve is the option of choice. But I know three people who have had cerebral bleeds due to coumadin. RCB, I am very impressed with your outlook and have noted you have had numerous replacement surgeries and coumadin therapy. Your thoughts on my situation would be greatly appreciated. CCRN

 

[RCB]

To CCRN

To CCRN

Hello,
. RCB, I am very impressed with your outlook and have noted you have had numerous replacement surgeries and coumadin therapy. Your thoughts on my situation would be greatly appreciated. CCRN

CCRN,
Welcome to our family and I hope you will stay and add to the knowledge base. As Cardiac Nurse you are already appreciated by most everyone here.

My general thoughts on your situation is of course sadness. We here,
all remember the first moments we got the life changing news of heart disease. When I first heard the news, I was a 8 year old boy, full of energy and a zest for life. I wasn't sure exactly what our old family doctor was saying, but I knew my life would be changing and I would never ever be a normal kid again. I started to fill up inside with a strange sence of impending doom and bust in to tears. I still carry that feeling with me today. That little boy was so right!

Sometimes it is very hard to come to this forum, especially, when you read about the kids. As a nurse, you deal with this everyday, in person. That is why nurses are so special- they run the hospitals.

I'm sorry but I don''t really understand the question you are asking me.
There are many here who share your BAV situation and would gladly speak
with you. There is a search function and a private mail (PM) system also.
This is all watched over by a wonderful man named Ross who will be more than happy to help you with anything you need.

Please feel free to PM me or anyone else here if you have a question.
If you need a second opinion, go to the Cleveland Clinic website and they
will be most helpful towards that end. The charge is only $600.00 and they are amoung the best.

Best of luck and I know you will be fine

 

[Nancy]

Welcome to the site-

Sorry you have to be here, but this is the greatest site. So many terrific and knowledgeable people and they understand about heart valves.

My husband has two mechanicals, has had three valve surgeries and also two lung surgeries and a ton of other medical problems.

He's been on Coumadin for almost 28 years. Never had a brain bleed, or even any other serious bleed which could be attributed to Coumadin. His INR is managed carefully.

Throughout the years, he's had some nosebleeds, even one that sent him to the ER, but his INR was right in range. So Coumadin wasn't to blame there, just dry air.

The only thing that we notice is that sometimes with little nicks, it will bleed for a couple of minutes, but it always respond to pressure.

Coumadin has not caused him any side effects. Many of his other drugs (about 14 of them) have had side effects, but not Coumadin.

He's in the groove now with testing and dosage changes, and it's no big deal for him. Just one of those things you have to do in life.

By the way, we LOVE you cardiac nurses. Joe's had super care from you guys and gals. He's been in the hospital more times than I care to remember.

 

[geebee]

Welcome and thanks.

Welcome and thanks.

I am so happy to be able to say thanks to all cardiac nurses by saying thanks to you. Without people like you, people like us would not be here to post.
I am sorry that the field in which you work has seemed to not be there when you needed it. It is nice to know that someone has finally diagnosed you properly and you will get things fixed and go on with a better life.
You will find that there is quite a large group of folks here that live normal lives on coumadin. As long as it is managed properly and regularly, it is unlikely to cause the bleeds you may have seen. Is it possible the people you treated were not managed properly? That may be why they had the brain bleeds.
I am sure this whole thing has come as a shock to you. Please let us know how we can make the journey easier.

 

[CCRN]

Calming Down

Calming Down

Thanks for your reply,

I'm still learning my way around the site. I guess my question is if I choose a biological valve should I fear reoperation? I realize that the choice of a mechanical valve doesn't mean I will never have to have a reoperation. I respect your outlook in light of the fact of your multiple surgeries and wonder if the fear of reoperation should factor in there. I've taken care of third time repeat patients that did great, however the surgery was "intense" to say the least. I think I'll get brave and call on a few people on the site in my situation. I feel like such an idiot. I've supported so many patients and know I work in an environment where I will get the best care, but I feel at a loss in direction for myself. I do think the shock reaction is wearing off so I can "brush myself off" and begin a new direction. Thank you for your kind reply.

CCRN

 

[JimL]

CCRN, I too would like to extend my thanks through you to all the fabulous cardiac nurses I had! They all did their job well, but some were even better. We depend on the nurses so much.

 

[Eowyn Rose]

Welcome CCRN,

18 weeks ago i was in the same situation as you. I still remeber clearly how it knocked me out. It took me a couple of weeks to come to terms with the news. After that i felt even weaker than before. Suddendly i relaised that my body was doing it tough. It was not just in my mind and it is not going away. Also being only 42 years old with family and work i just did not had the time to slow down. The tablets they gave me to help me, made my symptoms worse. I was told it will happen in the next 2 years. Anyway the operation was much sooner than later. I have my aortic valve replaced with a mech. 11 weeks ago. It is not easy what you are going through, but as all of us, you will do it one step at the time. And i am sure many of us will support you all the way.
by for now
Eowyn Rose

 

[bvdr]

CCRN,

Welcome to this site. I'm not actively working in nursing anymore but "CCRN" was one of the credentials I carried for many years. It sure is different when it is happening to you rather than to someone in your care. It is quite a different perspective. It has been a couple years and one valve replacement since I was discovered to have underlying rheumatic heart disease. For years I had been downplaying or ignoring symptoms until it was just no longer possible to do so. I have a mechanical mitral valve but I was already on coumadin due to atrial fib before the surgery. We have a member who also had a cerebral bleed and had her mechanical replaced with a bioprosthetic.

There are so many knowledgable, loving people here who are so supportive that I think you will spend many hours here. They will help take some of the "nightmare" out of all of this.

 

[geebee]

CCRN,
I am sure any patient and any surgeon you ask will tell you that the fewer operations you have to have the better. That being said, I almost think subsequent operations are "easier" (and maybe harder) because you know what to expect.
Each time a surgeon has to go in, there is more scar tissue and thus more danger in clearing a path to the heart. Luckily there are other paths that can be taken now in lieu of sternum entry. I do not know who is or is not a candidate for such entry but I am sure it must help. My last operation was a bit tricky and the surgeon actually prepped my groin area to use as an alternate bypass location if he was unable to clear the scar tissue. I also apparently "create" a lot of scar tissue so I am at risk. He was able to do traditional hookup tho and the groin area was not needed.
The surgeon who did my original surgery was so sure he would be able to repair my MV that we did not discuss valve options. He chose a mechanical for me because he thought it would last a lifetime. In my case, it was not to be but I think he made the choice that was sensible given the situation.
Knowing what I do now, of course, I would have hoped for a biological valve because I would have avoided coumadin. Although coumadin has not been a problem for me, I always prefer NOT to take medications if I can avoid them.
The other thing to mention is I have problems with afib so, I might have ended up on coumadin anyway.
I am going through all this history because I am a prime example of how there are no guarantees. We all have to make the choice we feel is best for us, accept that decision and make sure we live the life we have to the fullest. I am convinced things happen for a reason and I am so lucky because I have met so many wonderful people because of my heart issues.
OHS is difficult. I cannot stress that enough. I don't care if it is routine now, routine only applies to surgical teams. The patient is the one who goes through the various issues of recovery and it is not fun. I did it 3 tims because I really like being around. I would go through it 3 more times if needed but I would not be happy about it.
I am not sure if I am helping you and I apologize if I am rambling. If you choose a tissue valve you could conceivably have 15 years before needing resurgery (I believe some people go longer). If you choose a mechanical you could conceivably need a reoperation also because in some people the sewing ring "fails" and replacement is needed. That could happen in 25 years or so. Therefore, if you are young enough, 1 surgery may not be enough for your lifetime. The option of choosing a tissue valve now and then a mechanical for your next surgery could get you through with only 2 surgeries and get you 15 years or so without coumadin.
All these options are why we say the choice is very personal and you have to talk to your cardio, your surgeon, this website and family and decide what is right for you.
Please let me know if you have any other questions. Good luck.

 

[Harpoon]

I've always been a proponent of mechanical valves just because, by their nature, the valve itself should outlast you regardless of how long a life you have.


The reason (at least as is my understanding) tht you see repeat visitors to the cardiac ward is because of the complexity of their cases, neglect in post-operative care, or longevity of a bioprosthetic or homograft valve.


Most of the people who have issues with anticoagulants (coumadin/warfarin) seem to have them because they're not being careful enough in managing their diets and/or INR levels. That's not always the case of course, but I suspect it's a majority.

My valve replacement was my second OHS. My first came just a few weeks after I was born, to "replumb" transposed vessels in my heart. That surgery was pretty rough on my system. I spent about a month in the hospital with a raging fever after that.
The next 28+ years I was fine, an asymptomatic adolescent/teen/adult with a congenital heart defect. The first signs of a problem for me were a nagging cough and then an enlarged heart followed by signs of edema and then full on CHF. It was a two year process to get to the state I was before I had my tricuspid valve replaced and I nearly died getting there. I spent five weeks post-op on a vent because my body had a very difficult time recovering but I've ALWAYS had a strong heart even though it's screwed up and a MASSIVE amount of help courtesy of the staff at Cleveland Clinic's Children's Hospital.
It's now almost two years of coumadin therapy and I've never had a problem other than an INR that was slightly off my target range. No bleeding issues (outside of cutting myself with a knife while cooking, but anyone bleeds when that happens) and no other related clotting problems...

In fact, the only trouble I've had post-op to this point is a lack of sleep (job/parenting related), not enough exercise and a few extra pounds that I don't really need. Most of that came up before my tricuspid valve went south so I can't blame surgery on any of it.


Valve selection is a personal choice. With "clean living" any valve option should last a real long time. Specifics should be discussed with a surgeon, some do prefer certain types over others. My surgeon automatically said St. Jude's valve before I even had a chance to ask, I think it was probably the best option for my situation and there was no need for further discussion. Besides, I didn't exactly have time to look at any other alternative short of trying to repair the native valve.