“What Is Life Like On Coumadin?” Asks Mary Anne

Hi, My wife had a StJude Regent 19mm mechanical put in around Aug 2010. I believe if one has small aortic root, a tissue may be difficult to implant unless we do root enlargement which adds to complications. If one is on the obese side ie with a large body surface area, a small tissue valve can be a problem.

Has anyone had pulmonic valve replacement? I am about to have it in Boston, Ma would like to know if anyone has had this done and is Boston one of the best places (Mass. General Hosp)

Hi Adam,

I had a mechanical mitral valve surgery 10 years ago. I’m doing great and have learned to live with Coumadin. 2 years ago I got a home INR tester and that has made all the difference! No more driving to the lab, waiting, getting poked and prodded. It’s been an enormous benefit to me. It took some getting use to, but I’ve got it down and now it’s routine. I can test when it’s convenient for me-within the confines of what the Coumadin Clinic gives me. Got plans early Tuesday? Fine, I’ll test Wednesday. Worried about diet? I can test earlier than scheduled if I want.

It took a while to get used to what I need to regulate, and learning what things you might not expect to change your numbers are. Cranberries? Grilled onions VS raw? Who knew? I do, now. Now it’s routine, and I only have to give it a passing thought.

I knew that this was a choice I made when I decided on a mechanical valve. But I was young enough that the thought of having possibly three pig valve replacements didn’t appeal to me. Bovine wasn’t an option at the time.

When I get to feeling sorry for myself, which occasionally happens, I just think of the feeling I had when I heard those famous words from my Doctor: “Six months to a year”. I would, and did, every thing in my power to live way, way past that and see my three young boys grow up!

What is, is. There are people in the world with real problems I tell myself!

Thank you so much Adam for this site. I have my evaluation with a cardiac surgeon on Jan 10th and this helps me form so many questions for him. I have severe aortic stenosis, I am 45 and 3 yrs post gastric bypass. I assumed I would be likely to get a mechanical valve but so many of these posts are making me think about a life on coumadin. I am a nurse and know what the risks are, I have so many decisions to make.
Thanks for your posts everyone. They are very helpful.

I have just survived Endocarditis (from a routine dentist visit) I am 47 years old and am now being told that I need a replacement aortic valve. I am originally from UK but live in Fiji where the medical facilities are less developed. The comments from everyone above have been very helpful to me and I guess there is a lot of thinking to be done….not least of all where best to get the operation done!
Mark Spurlong

I am 65 and suffered a stroke from atrialfib, have been on coumadin 12 months with only the usual minor inconveniences.
My question is – how long before the warfarin kills me? in the long run??

I am 62 years old and in July 2011 became sick with what I thought was food poison. Went to a local ER and was told I had Acute Bronchitis & Atypical Chest Pain. 2 days later went to see another Physician for a second opinion and was admitted to the hospital for 3 days with Congestive Heart Failure. After further testing it was also decided that I had Severe Aortic Regurgitation and was sent to see a physician @ Oklahoma Heart Hospital Valve Clinic and was scoped and found out that I had an infection on my Aortic Valve. I was placed in the hospital for 6 days in October and was then sent home with a PICC line and IV antibiotics 2 times per day and was then seen by my Cardiologist on November 18th, 2011 & he scheduled for me to have my Aortic Valve replaced. I went into the hospital the evening of Thanksgiving to have my surgery the next day. I was unable to have the surgery then due to I was running a fever. Who would of thought after being on so much Antibiotics already, someone would run a fever. So I was scoped again after having another Heart Echo and found out that my Mitral Valve also had an infection on it along with my Aortic Valve. My Cardiologist told my that due to being healthy and age 62, he was going to give me a Mechanical Valve. I had my Aortic & Mital Valves replaced on 12-1-2011. I have done extremely well, having home health nurses out to check my INR every week. My INR is 2.6 this week & I have to get it to 3.5-4.5 due to having 2 Mechanical Valves. My life is getting back on track, still get alittle tired and weak, but otherwise my Coumadin ranges between 6-10 mg/daily. The TICKING of my valves is not a problem at all, I don’t hear it but my wife can hear it when she is laying beside me. But she is also a nurse, so she is able to detect it better.

I had a defective aortic valve since birth. I needed it replaced in January 2003. I was advised to choose a mechanical valve because I was only 46 years old and would most likely need a replacement before my life was over. Just the mechanical valve could last a lifetime; however, it meant taking warfarin for the rest of my life. Other types of valves last 7-10 years. My husband and I discussed it and decided on the mechanical. I am into herbs and natural remedies as well as traditional medicine when needed. Warfarin was a hard concept for me. However, I had a little trouble finding and maintaining the correct blood density at first. Most of the time, it is easy to keep my blood within the healthy range. I have not had any ill side effects. I take it before I go to bed with other supplements. Also, I have a small machine that I use to get my INR results. I just prick my finger. Most of the time, checking it once monthly is enough. If this helps at all, my oldest daughter met a woman in the doctor’s waiting room who shared with her that she was going to have another surgery to replace her valve and that she was going to get a mechanical valve this time because it had been only 7 years since her initial surgery. This confirmed my original decision. God Bless and Good luck!

I’m 41 years old, and am scheduled to have my third aortic valve replacement next friday. I was born with a bicuspid aortic valve, and in 1997 at the ripe old age of 26 I developed endocarditis and as a result required avr. I didn’t want to be on coumadin, and was very active so I chose to go with a porcine tissue valve which was a very positive experience for almost six years.
in 2003 I had a recurrence of endocarditis and had to undergo avr again. I opted to go with a human tissue valve, that promised the potential to last for 20 years. It even came with a 20 year warranty. my hope was that if the valve lasted 20 years, technology would advance during that time to produce a better valve for my 3rd go around that would last me to the end.
about 6 weeks ago I caught a cold and had a funny feeling in my chest, and upon listening to my heart, I heard a very pronounced murmur. an echocardiagram revealed a moderate insufficiency, and a subsequent cardiac catheter test confirmed that the valved had calcified to the point that it wasn’t closing all the way. so much for the 20 years.
the life spans of tissue valves are limited and vary from person to person, depending on age, activity levels, and metabolism. for me, getting another tissue valve would mean having to have another surgery in 5 to 10 years, based on my history with tissue valves. my surgeon explained that the risk involved with a 4th avr is considerably higher than that of even the third, which is somewhat higher than the first or second. with that in mind, the goal of this surgery is to avoid having to have surgery again.
this time around I have chosen to go with an ON-X mechanical valve. All of the accounts that I have read on this page have helped me feel at ease with the prospect of going on coumadin.

Thanks all for sharing

-honeyman

hello , iam a 34 year old male i had my aortic valve replaced at the age of 20. i had no symptoms that anything was wrong. ive been taking coumadin for 14 years and i the only diffence in life is i may bruise easier and i dont know what i did to get the bruise . like my cardiologist told me after surgery dont stop living your life and dont stop doing what you enjoy . so now i may not ride dirtbikes anymore but iam not going to let coumadin slow me down. i just keep it monitored and adjust mg accordingly and see my cardiologist every 6 months and stay away from vitamin k. i found a multi vitamin without vitamin k that i take every morning . but by all means dont let coumadin stop you from doing what you love to do ………except if your a ufc fighter i would probably suggest you should retire asap…

had my aortic valve replacement on January 30/13, plus a bonus of 4 bypasses (which seems to be a common occurrence – surgeons appear to reason that while the heart is exposed, why not fix the arteries as well). I’m 67 and opted for a mechanical valve to avoid another surgery in 10 – 15 years. I was readmitted for 10 days as I was accumulating fluid in my lungs to the point where I could hardly breathe. AOK now and no complaints re Coumadin and the discipline required. It’s a small price to pay for a rebuilt heart and a new lease on life !

Hey everyone, i just had a mechanical valve put in last week. My only concern is my surfing. If there are any surfers out there on Warafin please let me know if you still surf and if it has affected your surfing.

Ben.

Mitral valve replacement at 36 years old and something the surgeon said to me the night before my operation became embedded into my thought process. He said, “This surgery is performed not to save your life, but to give you the rest of your life”. If you sit and think about the message in that, I know that I will live my life to the fullest. I am on coumadin, have it checked regularly, monitor my intake of Vit K so that it doesn’t differentiate week to week, and I do the things I enjoy. If you want to surf, if that makes you happy and you live for it, do it. There is always a risk of injury in everything we do, even taking a tumble down the stairs, and that risk will always be there. You can allow it to become a nightmare or you can learn to monitor your surroundings quickly, habit, and then ask yourself, “Is this important to me?” You have one life, its up to you how you choose to live it.

are nose bleeds associated with taking Warfarin?

I’m not a doctor, but yes, it COULD be a side effect of coumidin. Or it could be a change in weather. Or a cold. Or any number of things. The best thing to do is test your INR.If it’s wacky, contact your PCP. I’ve been on coumidin for 13 years, after a mitral valve replacement. The best thing I ever did was get a home monitoring kit. Now I can test my number when it’s time, when I have to take other than a regular medication, when I’m sick or had a couple of drinks (oops!) They are not cheap, the strips you use are not cheap, but it IS more cost effective than lab fees, not to mention the convenience. I was 48 when I had my MVR and will be on coumidin for the rest of my life.

I had mitral and aortic valve replacement on February 2013 n am on warfarin. My question is does this stop me from getting pregnant? I am 36yrs old and from Nigeria. Please I want to hear from people who got pregnant after mechanical valve replacement. I can’t afford the home kit, I even solicit for help for my surgery and there is no health insurance here, I went to India for my surgery. Please I want to know because I really want to have another baby. I am married with a lovely daughter.

has anyone had ohs avr and have diabites i test myself twice a day and i take insulin twice a day does this have any affect on taking coumadin also have one or two kidney stones a year does this cause excessive bleeding thanks steve

Ok why would you ask when is the Coumadin going to kill you…please thank God that you are alive

Jerry lemons, how are you doing? Curious cause my husband just had a mechanical mitrial valve and he is worried because having trouble getting his INR level right. He has thick blood I guess is the reason, I don’t know. He is thinking it was a mistake to have this surgery. Love your story. I pray you are still well. Let me know how you are and any advice. Thanks, concerned in Nashville

Can anyone tell me what are the normal ranges of PT INR for conventional lab method and for self-monitoring machines.

I had a mechanical Aortic Valve transplant. I am 47 and live my life better than I ever have. Mine was replaced in the year 2000 it is now 2017 and still going strong, monthly blood tests and one mini stroke but all is well.

Hi, did you find the answer of your question? I am scheduled for aortic valve replacement in April 14th 2017. I decided to have mechanical valve but it seems being pregnant is dangerous with mechanical valve.

I can’t believe nobody replied to this! You MUST NOT become pregnant on coumadin EVER. Your surgeon should have asked if you wanted children before giving you a mechanical. Coumadin causes terrible problems to a developing fetus. I feel horrible telling you this, truly, but I would tear the biggest strip off your surgeon for not telling you this before the surgery. I’m actually sitting here in shock.

I’m 33 and still deciding what to do. Lots of scary things to read about Warfarin, so I’m sure I’ll be deciding right up till the day of lol. I have some great concerns that many would agree with and share, and then I have some that men would laugh at and some women would judge. My question is this, and I don’t need any “how dare you be so vane!” speeches: I know that coumadin can cause hair loss, but how much are we talking? I’d very much appreciate any insight. Yes, i love my damn hair lol. A lot. Im not the 40 something with the short sassy do, mine is long and thinning will show. The idea of not having any by the time I’m 50 doesn’t sit well with me either. I guess the only potential plus is that if I’m one of the unlucky buggers who gets dementia caused by long term use of coumadin, then I’ll be okay with being bald and won’t remember life with long flowing hair! I’m a silver lining kinda gal. Oddly enough, I’m not worried about blood drawn, tests or diet change, and I’m already always cold lol. No, for me it’s the fear of 20 years down the road. The idea of having dozens of mini brain bleeds without knowing and then ending up with dementia at 60. That’s the big one; the one that keeps me up at night. I see people writing about surfing and motorbikes and I shake my head. It’s not the bleeds you can see, people, it’s the bleeds you don’t see that matter over time. Every time you hit your head, even only somewhat hard —with coumadin, you are playing with fire.

Thank you for sharing your story! I too will have to undergo 4 surgeries if I choose bovine so my only choice is mechanical.