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R

rn_cvicu

Hello everyone,

I am brand new to this site and I hope it helps. I'm 31 year old registered nurse who recovers OHS patients in the CVICU. I recently learned that I will need aortic valve repacement in the near future and I am terrified. I recovered many valve patients but I never saw them again afterwards unless someting went wrong or if they needed another OHS. I just had a son in november and I would love to see him grow up. I am considering a mech valve due to my age and durability but I am afraid of throwing a clot and suffering a disasterous event. I'd like to hear from people who had their valve or valves for a long time and able to live a relatively normal life and lifespan. Any othe advice would be much appreciated.
 
Welcome Sean,

I have had a mechanical valve since 1980 and have been on coumadin since then as well. Although I have had 2 additional OHS, it was due to excess scar tissue I develop and not due to failure of the mechanical.

My current mechanical has been in since 1994 and things seem to be going great.

Coumadin has not been an issue for me. It has not changed my life in any way other than taking a pill every day and having blood tests.

Hope this helps some and please let me know if you have any other questions I might be able to answer. I wish you well in your search for what is right for you.
 
Dear Sean,

First of all, welcome to the community! You have come to a great place, full of smart, educated & experienced people that will hopefully help disspell some of your fears!

OHS is not that bad, really! And you will find that there are many of us here, that have lived long & active lives with relative little restrictions. Some of us have had multiple surgeries & we're still talking about it! :) I had my first 2 OHS in 1975 for a double-valve transplant I have enjoyed a very active lifestyle all these years. I did undergo a 3rd OHS in 2006 to have one of the old valves changed-out but hopefully, you will never have to have another one in your lifetime. And I have been on coumadin for 33 years & it never presented any issues for me; it just became a part of my life & I accepted it.

The waiting part is the hardest & all the fears & anxieties are normal & we have all experienced them. You are NOT alone! So hang in & try not to stress too much about things. Just remind yourself that this surgery is necessary so that you will live to see your children grow up & I have no doubt in my mind that you will!! Take care & keep posting! You're in my prayers! :)
 
Hi there Sean and Welcome

Although I'm no veteran - my replacement is only a year old.

Your young and healthy, there should be no reason for you not to be able to see your son grow up.

As for throwing a clot........there is also that chance of being hit with a bus (before your surgery), sorry to be blunt, but if I was to worry about throwing a clot I wouldn't be able to live my life.

I guess I should also mention that the founder of this site, Hank went skydiving with his mechanical valve. And loved every minute of it.

YOU bet you can have a normal life after OHS.
 
Sean,

It's great that you found this site and all the wonderful people here who can share their experiences with you. Facing OHS is a huge undertaking but you know that the outcomes are quite good these days. I received a mechanical valve only a year and a half ago. I have since been able to enjoy the addition of one more grandchild to our family and now look forward to another one arriving this summer. I just attended the birthday party for our 3 year old grandson this weekend and Granny K (that's me) even climbed into the jumper and bounced around smiling and laughing with LJ (our grandson).

You may want to see if there is a Mended Hearts organization or volunteer in your hospital. I recently joined that group and we offer peer support to one another and patients before and/or after surgery. There are lots of concerns and questions we all have and its great to have someone to talk to who can relate to the unique challenges we face. It's nice to know there are people living full lives after OHS. Yes there are some changes that will happen along the way but life can be good....even better after surgery.

I have an adult daughter who decided to become an RN during my OHS hospital stay (she graduates in May 2009). It's amazing how much good can come of this kind of experience to yourself and those close to you.

You have a young family and they will definately benefit by your taking care of yourself in this regard. Please let us know how we can help you in any area of need.

Hugs....
 
Nice to see you here

Nice to see you here

Dear rn Sean:

May I suggest that you take a look at the forum entitled "Active Lifestyles..."

You may be surprised at the feats that people have accomplished after valve replacement. The accomplishments are outstanding.

We always have room for more. Imagine the accomplishments that you will be able to share with us after valve replacement.

In the meantime, we are here or support, encouragement, and information.

Kindest regards,

Blanche
 
Thank you for the assurance

Thank you for the assurance

Thank you for your replies. It's comforting to see that life goes on after OHS and valve repacement. I feel a little better about the coumadin thing. I hope to monitor and manage it myself if possible. I saw a gentleman on the site that had one of the first valves and on coumadin for 45 yrs. I THINK THAT'S AMAZING!!! I hope to live a full life for my wife and son. Your support is much appreciated.
 
Welcome, This is the best place to be for information and encouragement.
I've had two valves replaced in June 2006 so almost two years old.
You will do fine and you will feel the best you have in years I know I sure did.
Keep us informed on how your doing and again welcome....
 
Hi! Im new here too and was an RN until I became too symptomatic to work.
I am not a veteran-just had Sx 2mos ago(a bovine tricuspid replacement)
but Ive had tricuspid regurg with pulm. htn. for years and as a result ,a
moderate amount of damage to the rt. ventricle.
I dont mean to throw a wrench in the machine, but Im one of the 2% who
has trouble with coumadin. I am on Lovenox instead . I am 42 , but had to
choose the tissue valve ,but since its the tricuspid , I may get more time
out of it.
I think I would have gone with the mechanical if it werent for my reaction,
but truly most people dont have problems with warfarin and I have asked
alot of people.
I wish you the best , Dina
 
Welcome Sean,

In some ways it may be an advantage that you've seen first hand through your work that valve surgery has a very high success rate. I had my surgery on a Wednesday morning (Ross Procedure at Duke 4+ years ago), was out of ICU by 10AM on Thursday, and was discharged at 10AM on Sunday. The very worst part of the entire ordeal was waiting to get it over with. Once I walked through those doors at 5:30AM the day of my surgery I actually felt relieved that the waiting was over.

In some ways it may be a disadvantage working in a CV ICU because like you said...you don't get to see the patients that you take care of go on to recover and get back to their normal lives. And if you do see the patient again it's because they are one of the small minority that have had complications.

You also need to remember that you are young and I'm assuming you are in good health other than your bum aortic valve. That probably drops the mortality rate in your case to close to 1%. Since the Ross Procedure is more complicated I was quoted at 1.5-2% mortality rate at age 43. When I had endocarditis and was having a picc line inserted I was quoted a mortality rate of 1% for that particular procedure. :rolleyes:

I can't speak for everyone...but I bet there aren't many people here who have had valve surgery or are waiting to have valve surgery who weren't scared...some more than others. If it makes you feel any better you can put me down as one who was terrified...that was until I found this site and started learning more about what I was facing. I was still scared, but after finding VR.com I did decide not to dig a hole and crawl inside. :D

Also forgot to mention...I am in better physical shape today than I've been since the early 90's when I took up surfing for a few years. For awhile after the surgery I started to wonder if I was going to see a major difference in my stamina and energy levels. It took awhile but the major difference is easy to see today, not to mention that I don't seem to get sick as often as I used to and even my seasonal allergies seem to have gotten much better.

BTW I think I'm near the top of the list of posters for most words used per post. :D OK...I think I'm done now...
 
Future?

Future?

Hi Sean,

I'm sure you'll hear from more members who've had their replacement valves much longer than me.

The fact that you've worked with patients during the recovery process and you've never seen them after they leave is a reassuring indication that life does go on after valve replacement surgery.

My original equipment was replaced with a mechanical valve with a factory installed conduit. Coumadin has not been any kind of factor in changing my lifestyle and the activities I pursue. I do bruise easier and I'm much more careful about wearing a helmet. My wife always pushed me to wear head protection more often before AVR surgery became a reality.

As a nurse, you undoubtedly recognize the value in approaching the challenges you face with a positive attitude. Approach the challenges you face with the expectation of a positive outcome and you probably won't be disappointed.

-Philip
 
Sean I wondered when I registered you if you were and ICU nurse. If it helps buddy, it doesn't matter if it's your first or fifth surgery, they all scare the crap out of you. Good thing too. If you weren't scared, your simply not human.

I'm a dissection survivor as well as a mechanical valve replacement. You will be fine and honestly, you'll feel alot more comfortable knowing that thing ticking in you is doing it' thing.

Visit www.warfarinfo.com and learn all you can about Coumadin. Dispell some of the myths that I'll bet you've been taught or have heard. It really isn't as bad as many in the medical profession make it sound.
 
My husband had his first valve replacement at age 44 (aortic), then went on to have a mitral replacement and then a mitral valve repair. He recently passed away at age 75, and not from any valve malfunctions. His valves were still going strong. He had many other medical issues.

He was on Coumadin for all that time.

The valves saved his life and gave him a good quality of life he never would have had.
 
I was 32 when I had my valve replaced. My children were 5 and 7 (but I had significant valve issues since the pregnancy for my 2nd child). My surgery was over 16 years ago. I home test and manage my own dosing and Coumadin has been a non-issue for me. I've had a very active life (I'm not athletic - but sure wish I was!) and just got back from a trip to France to visit my daughter who is finishing up teaching there this school year (she was the 5 year old).

I recommend you read the stickies at the top of the Anti-coagulation forum and view the videos in one of them. Unfortunately you would think that the medical field would be up-to-date on warfarin management, but we've found here that there still are many who are not. So you may want to check those threads to see if it helps with some of your Coumadin fears. Many times we find that those who are having difficulty with their warfarin management are being managed by someone who doesn't know how to manage warfarin. And yes - there are even Coumadin clinics that get it wrong. The incidence of stroke for a properly anticoagulated mechanical valve is the same as a tissue valve. The stats are very low on ACT bleeding and stroke incidences. (And we believe that if everyone was managed the way they should be, those numbers would be even lower.)

Take some deep breaths. Understand that this surgery isn't threatening your life - your valve has already established that it is what is threatening your life. The surgery is saving your life!!!!!!:D
 
Hi Sean. Welcome to this site. We actually have quite a few nurses that are members. I am an RN and worked many years in both surgical ICU/neuro-surgical ICU, coronary care ICU, and finally worked about the last ten years in Emergency nursing before I retired from nursing. It gives you a different perspective of the whole thing when you become the patient.

I discovered that I had extensive rheumatic heart disease a little over five years ago and soon after that had an MVR. Problems that I still have are from the underlying disease and not from my St. Jude valve. The information and experiences you will read about on this site will give you an education not available in any textbook. It is true that you have seen the patients that have experienced problems requiring re-hospitalization and that is not the "norm". It seems that everyone has a glitch sometime or other with valve replacement but by far it is treated more with "tweaking" than more extensive intervention.

I would expect that you will have your valve replacement, go through a period of recovery with a bump here or there, and resume your life and watch your family grow up. It might take up to a year after surgery to where you are top notch but you will be fully functional within a couple of months.

If you go mechanical then do so with the expectation that you will be able to home test your INR. Many of us do and it helps you to keep control of your own life and lets you be fully involved in managing your own anticoagulation. Sure there may be problems along the way but life is like that and you handle them one at a time. Besides it gives you the perfect opportunity to evaluate your life in a different way and to prioritize what is really meaningful.

I'm really sorry that you find yourself in this position but it will make you grow both as an individual and as a nurse. So please make yourself at home here and ask any questions you want. Having a nursing background will help you understand the medical issues but here is where you will find the real scoop.:)
 
Hi Sean -

Welcome to the site; glad you found it. Sorry for the difficult situation you find yourself in. There are other nurse patients here and some doctor patients here also.

The main thing I tell people who ask me how I'm doing now is that: getting a new valve was a bit like a resurrection for me. I had gradually worn down while the old defectively structured valve was deteriorating and didn't realize the valve was causing so many problems and didn't realize that I could feel so much better. Kind of like getting a new pair of glasses and realizing how much better this beautiful planet looks, but on a bigger scale!

I hope you will feel that much better too! Take care and please post again.
 
Welcome to the VR community. Sorry for the circumstances but glad you found us. My fears of OHS were much worse than the OHS itself. In fact I was kind of "pleasantly surprised" when it was all over. The waiting before and the slow process of recovery after (i.e. the frustration of how long it takes) was the worst part. I had a repair, not a replacement, but OHS is OHS. Now 2 years out, I'm pretty much back to my old self and life is good. There's lots of "long timers" here with valve replacements who I'm sure will share their stories. Best wishes and good luck.
 
Welcome to the Receiving Side of Heart Surgery Sean !

Since you have BAV, I strongly encourage you to select a Surgeon who has considerable Experience dealing with BAV and the often associated Connective Tissue Disorders.

This is NOT a job for your Local Bypass Surgeon who does a valve or two every once in a while!

I also recommend that you check out the relatively new On-X Mechanical Valves which were introduced in 1996. I suspect you will be as impressed as I am with the technological advancements (90 degree opening, lack of turbulence, patented smooth leaflet surfaces, pivots with greatly reduced damage to blood cells, and built-in barrier to Pannus growth).

See www.onxvalves.com and www.heartvalvechoice.com I expect you would enjoy talking with their Manager of Education and Promotion, Catheran Burnett, RN (former surgical nurse). Her contact info is 888-339-8000 ext 265 or [email protected]

Studies have shown that patients who Home Test and Dose their Coumadin have the Lowest Rate of 'Incidents', followed closely by dedicated Coumadin Clinics. Sadly, there is a WIDE Variation in Quality of Coumadin Management from Individual Providers (such as stand-alone Physicians and/or Nurses).

I second the recommendation to review the material on AL Lodwick's website www.warfarinfo.com He is a Registered Pharmacist and Certified AntiCoagulation Care Provider from Pueblo, CO (recently retired). He has served as an Expert Witness, Seminar Speaker, and Author ("Have you had your Rat Poison Today?") on anti-coagulation management.

That should keep you busy for a while!

Feel free to ask any questions as they come to mind.

'AL Capshaw'
 
Welcome Sean....I have only had my mechanical valve 2 years but all is well!!....NO change in what I do, eat etc.....I feel better than I have in years....I am sure you will do well...the hope is there, all you have to do is take hold of it.
 
Have you considered Ross (procedure, that is)?

Have you considered Ross (procedure, that is)?

Hello Sean. I can't yet offer much expertise - am new to this site, found out about a congenital bicuspid valve 4 years ago at age 53, and am "severe but asymptomatic" so am still fine-tuning whether the surgery will be now or a few years down the road. I do want to offer my heartfelt support. In the few days I've been on this site, I have a huge sense of comfort that so many people have been dealt this difficult hand and have played it gracefully and in a life-embracing way. I'm inspired by the example!

I am still trying to find out more about the Ross Procedure, but as you probably know, the 2 cents on it is that if you're a candidate it's the one currently-available possibility that could possibly put you in a position to have a life-long "fix" without coumadin. [People also hope the On-X mechanical valve may prove to be workable without coumadin and that's currently under investigation.] This is of course a simplification, and there are risks and counter-arguments. Many people on this site have written about the Ross Procedure at length. Not everyone's a candidate, but you're at least in the right age range, and very few surgeons really specialize in it. A number of people on this site have written about Dr. Stelzer in NY.

Good luck!

Leah
 
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