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

Mary,

I am a 29 year old male and have been on coumadin since 2002 for a mechanical aortic valve replacement. My experience has been mostly positive. Activity wise, I am doing everything I have enjoed doing most of my life (surfing, basketball etc.) i do bruise a little easier these days and you need to be careful about head injuries, but really the worse thing about coumadin is needing to go to the clinic to get blood drawn every 2-3 weeks. besides that, life isn’t that much different on coumadin and it’s really not a big deal. I hope this helps!

Jonathan,

Wow. That was fast. No sooner had I posted the Coumadin question did I notice you had already responded.

Thanks so much for your thoughts. Specific to “going to the clinic” is there any possibility of you getting an INR home testing machine like Margaret’s?

http://www.heart-valve-surgery.com/heart-surgery-blog/2009/01/07/inr-home-testing-machine-for-margaret/

Keep on tickin!

Adam

P.S. We should get a “Heart Surgery Surf Team” together. There’s a bunch of us on this site.

i have not had the valve surgery yet but the doctors i have talked to do not like patients on long term coumadin because of the bleeding possibilities. If you are 60 or older more or less they prefer tissue valves. A recent St Jude Study showed 92% survival rate at 20yrs with tissue valves. Yes The tissue valves last much longer than years ago. They are now doing experimental studies on valve replacements through a catheter and not opening the chest. If I was young I’d have to have mechanical valve to avoid reoperations. Age matters here

I am now facing a redo surgery after a mechanical valve replacement I had 2 years ago. I have done much more research this time around.I sat down and asked both my surgeon and my cardiologist (both in their early 40′s) which valve they would choose.I was shocked to hear them both say a pig valve.They both said that coumadin is a dangerous drug that can complicate all kind of disease states.So I began searching.
I found a recent scholarly article that addresses the question.”Patient outcome after aortic valve replacement with a mechanical or
biological prosthesis: Weighing lifetime anticoagulant-related event
risk against reoperation risk” February 2009. You can get a hold of it on line.
The surgeon also told me that I need to look up diseases separately to find out how coumadin affects the outcome of each individual one.(I did find out that the survival rate with cancer drops dramatically.)
Ask your surgeon a direct question. Ask him how coumadin complicates treatment for other disease states down the line. The little booklets they hand out dont alert us to what can happen down the line. Those booklets are too generalized.
I have not had any problems with coumadin (I am 51) but This time but I will be choosing the safer route and using a pig valve.Both Doctors told me they would choose a pig valve and hope for new medical technologies to come along.(The article also talks about the techniques they are currently working on..they are actually looking at placing a new valve WITHIN an old Biological valve when structural valve deterioration diminished cardiac output).
I hope this helps.
I found out that patients need to ask specific questions when discussing the outcomes with your doctors.
My personal 2 cents worth: GET MORE THAN ONE OPINION! I should have gotten a second opinion the first time around..I might have avoided this reoperation.

hi i am on warfarin, coumadin to you in the states, same reply as Jonathan find no great difficulties but certain foods do take the inr but if you are willing to eat a a higher dose no problem. I think age comes into consideration for a younger person because they would need a replacement after 10 or 15 years.
In the uk the inr machines are very expensive so there is a track to the docs but its a minor inconvenience
thank you

I have been on Coumadin for about 8 years now for another heart defect (PFO). I now have aortic stenosis and will eventually need valve replacement. The biggest thing about taking Coumadin is that if I get the slightest little nick, I will bleed. Not profusely, just enough to be inconvenient. Also, more seriously, whenever I have any surgical procedure, I have to come off the Coumadin until my INR is low enough. Then, going back on it is sometimes difficult to get adjusted. I work in a laboratory, so getting my blood tested is not as inconvenient as it is for some. You do have to monitor your INR periodically, usually once a month once you are at a stable level. You also have to avoid eating excessive amounts of leafy greens as they contain vitamin K, which will cause your INR level to be too low. You also have to be careful with any sort of supplements sold OTC such as those containing green tea, etc. This too will affect your blood level. Other than these more nuisance type things, I have not experienced any bad side effects. One more thing, you do have to be careful not to fall, etc. anything that might cause internal injury causing bleeding inside. All in all, it isn’t too bad and sure beats a stroke or in both our cases sudden death from aortic stenosis! Hope this helps. It really isn’t so bad!

My 1st & 2nd diagnosis were that I needed valve replacement … thus coumadin for life. I’m 56 & have horses. My 1st cardiologist & surgeon told me I would need to give up horseback riding. Maybe horses are a bit more unpredictable than surfing?? I think they sort of both fall in the same range! That news pushed me to search the internet .. I found Dr. David Adams at Mount Sinai Hospital’s Mitral Valve REPAIR center. After reviewing my echo & TEE he gave me a chance of 100% repair. I flew to NY from CA & next Tues. will be 8 wks. post op. I long to ride my horses … BUT now WITHOUT needing coumadin it will just be a matter of time !!!! THANK YOU DR. ADAMS for saving my LIFESTYLE!!!

For ME, I wanted badly to avoid coumadin. My father is a pharmacist & he did said it isn’t THAT bad … but it was my activities that would suffer. And there are some diet limitations. Dark green leafy veggies …

Aortic value replacement is in my future. My husband has been taking Coumadin for over 5 years. He has had no side effects and remains quite stable on the blood tests. I had been thinking that I would have a mechanical heart valve when the time came. However, we learned the hard way about the unseen possible effects. He fell and broke 2 ribs at the office. The fall caused only a minor cut on his back when he hit the bookcase. He had very little pain. It is a good thing we had the doctor check him out that day. One of the fractured ribs tore a small hole in the lining of one of his lungs. And, being on coumadin, he bled internally. He was hospitalized for 5 days. As a result, I will not have the mechanical valve. The risk of falling rises as you get older.

I’m 69 years old and had mitral valve replacement last May. I chose a tissue (cow) valve because I’m very active (Climbing, Biking, Hiking, Hunting) and did not want to deal with coumadin and the risk of bleeding I heard was associated with it. I’ve fully resumed my activities (700 mile bicycle ride back to my 50th high school reunion in August) and am glad of my decision. I take a fall on my bike occasionally and have only bruised without any other problems. Lynn Heeren, Sheridan, Wyoming

I have been on Wafarin since last December and the only issues I have had is remembering to take the medication. I used to drink more before my surgery and now I am limited more or less to a glass of wine per day but I would say that is probably a positive rather than a negative. I have not changed my diet, I just have to be consistent with the amount of greens I eat each day. I am fairly active and I notice I bruise a little more easily. I ride a dirt bikes (moto) and the risk is a little higher but like my cardiologist said, If I crash and break my leg or bust my spleen I will have bigger problems than just being on Wafarin. You have to continue to live life, not just being a spectator.

im 46 and have an artificial valve. ive been on coumadin for about 7 months now. i did have trouble getting mine level.ive only been level for a little over a month due to it changing as my activity level increased as i started getting back to my old self again since surgery. i am extra careful now about preventing injury and it is abit scary in the beginning, but i made my decision based on not wanting another surgery and one of my family members lived on it from 40 til she passed away in her 80s.ive been reading and recently learned that the st judes valve is a very low-risk one as far as clotting, so maybe i’ll be able to switch to something else as more studies are completed, maybe aspirin or something! i agree its a hard decision……..any questions, you can email me at jeffstoveken@yahoo.com

Mary Anne, if I had a choice I would select a tissue valve.

When on warfarin
* you need to have regular blood tests for INR levels about every 3 or 4 weeks (after INR has been stabiised (took me 3 months)).
* you have to be very meticulous in your dosing, that is, dose size, the time of day you take it and even the time of day of your blood tests.
* you have to be very careful about your diet, generally limiting your intake of vitamin K, mostly in leafy green vegetables.
* if you acidentally forget to take your tablets it can take several days to get your INR back to the correct level, whilst that happens your risk of stroke is increased somewhat.
* when on Warfarin you must be very careful to avoid bruising particularly internally.
* depending on your prescribed INR level you tend to bleed more from the nose and skin wounds than you did before your operation. (Although the prescibed INR level is usually a careful trade off between minimising your risk of stroke and bruising/bleeding.

A major consideration in choosing between a tissue and a mechanical valve is the statistical life expectantcy of each type. As I understand it, the mechanical valves have a longer statistical life expectantcy than the tissue valves. This is no problem if you are over 70 say when your normal life expectancy would be similar to the tissue valve. However if you are younger you might otherwise expect to live longer than the life expectantcy a tissue valve. This means you would statistically have to face another valve replacement when you are at an advance age which is statistically risky.

I have had a St Jude mechanical mitral valve since December and am quite fit and “getting on with it”. I still have Arterial Fibrulation (arrythmia) and am not sure if it is related to the type of valve or not.

Please don’t accept my word for it but use my comments as a basis for your consulatation with your cardioligist or surgeon.

Ross Parrott

At 73 I have been on coumadin for 9 years and in no way does it or has it interfered with my life except having to go constantly to check levels–it seems to stay at a certain level for quite awhile then it has to be adjusted.

It does take a while for wounds to heal and sometimes, like having teeth cleaned, you have to stop taking it for a few days.
of all the medicines I have taken and am taking it has had the least side effects and/or recations from me or my body.

Hi,
I have been on cumadin since I had my aortic valve replaced with a St. Jude valve on Dec 4, 2008. I have not had any problems with bleeding or brusing that I was warned about from my Doctor. The only problem was remembering to take my dosage every day but with an alarm to remind me that is not a problem anymore.
For anybody trying to decide on a mechanical or tissue valve do not let the cumadin keep you from chooseing a mechanical valve.
Lee C.

Once you get used to it, Life with coumadin is not much different. I suggest ordering a home-test dvice for PT/INR testing. INR is an international standard value (1.0 – 8.0) that shows how fast your blood is likely to form a clot or, in other words, how thin (easy to flow) or thick (slower to flow especialliy in small veins). The bigger the NR value is, the longer it takes for the blood to clot and the less is the probabilty to have a blood clot in your legs (DVT) which can move into your heart and lungs. However, if he value goes above 4,0, you may be prone to intenal (mostly Gastro-Intestinal) bleeding. Main interaction is with alcohol (increases INR) and foods with vitamin K (spinach, brocolli, aragula, cole slaw, etc.) (decreases INR). Using a home test device, I was able to keep it in range ( 2.5 – 3.5) most of the time even with heavy alcohol use (50+ drinks per week). If you get a result below the desired range, you take 2.5 mg more Coumadin than your usual dose that night and maybe the next night as well. If you are above the desired range, just eat some spinach or aragula or cabbage at dinner and take less or no coumdin that night, it will go down in the next day or two. Home test devices are available from companies like EdgePark and QAS. Check with your insurance first regarding coverage inclding the device itself (it also has testing supplies).

Kemal

LAurie Collins, If you don’t mind, why are you doing another replacement after just 2 years?

Hi,

I’m 30 years old and I’ve been on warfarin since my aortic valve replacement in October 2008. I haven’t noticed any side-effects except, perhaps, that I bruise more easily than before. The 20 minute detour once a month to pop into a testing facility to check my INR is a very minor inconvenience. Given the choice between being on warfarin and re-operation in 5-10 years, I’d take warfarin every time.

Allan

Hi guys,
Been on Warfarin for 10 months since AVR. Apart from the regular trip out to have INR check – not really an inconvenience – I have not experienced any problems. Of course, any cuts or nicks can cause a concern, more psychological that anything else. Am I going to bleed to death in front of the shaving mirror? Of course not! Go electric, grow a beard – be more careful. That goes for the boys too!
I keep myself active, eat well, do all the things I have always done, but like Mike, I have had to cut back on the pleasures of red wine. Not that I over-indulged, of course. I just enjoyed it. Mike, split your glass into two smaller glasses and sip slowly. It make socialising a more pleasurable experience. It’s all in the mind!
Kemal! You have got a problem. Do you keep your INR machine in your wine rack or chill cabinet? 50 a week! Amazing… You certainly keep your brain active with the math.

Mary Anne,

I am 39 year old healthy person, 5 months removed (10/27/08) from aortic value replacement and aortic root repair. I have a St. Jude mechanical value, and opted to go that direction because of my age, and with the hope of not having to do it again. I have been on Coumadin/Warfarin ever since and am doing great ! I take my does 1st thing in the morning, so it is easy to remember. I am in the process of obtaining my own home PT/INR testing kit (these are expensive and can cost up to $1500 just for the machine). I go once a month for testing right now. All of the studies show those who test themselves at home and more often than monthly stay in “range” better, thus preventing the blood from clotting.

I plan to buy my own machine if insurance does not cover it, I figure I am worth it and want to have the best handle on this since it’s a lifetime commitment.

I am athletic and play sports, and this has not stopped me !! Bottom line, it’s different for every person, but NOT NEAR as troublesome as I thought it would be. My life has adjusted to it without a problem. I wish you the best of luck with whatever direction you head.

THANK YOU EVERYONE FOR YOUR RESPONSES! You’ve all given me a lot to think about and I greatly appreciate your input.

Hi Mary Anne,
My 6-yr-old son had his mitral valve replaced w/ a St. Jude valve and has been on Coumadin(warfarin) the last 4 years. I think the decision depends on your unique situation. My son has bruising & nosebleeds a lot. He just recently had to have a surgery to have his nose cauterized because we couldn’t get the bleeding to stop. He has other medical conditions that require prescription drugs and we’ve learned that Coumadin does interfere with many drugs out there. We worry about him like crazy – at the park, on the school playground because he is so active & falls down & rough-houses all the time. We have an INR testing machine at home for finger pokes & that’s good cuz it allows to avoid the frequent doctor’s visits. But we have found that monitoring his INR & adjusting Coumadin dosing is like a part-time job. When he gets sick, his levels change. If he has a med change, his levels change. I think the difficulty with Coumadin is different for each patient depending on age, diet, prescription drugs, other medical conditions, etc.
Best of luck whatever you choose!

Hi all: Thanks for all of the responses. My husband is facing surgery and I wrote in along with Mary Ann to find out about Coumadin.

We would also like to hear from Laurie Collins re: why her surgery is being re-done. Sorry to hear it!

Coumadin therapy is not that bad — unless it gives you other side effects and problems. I had a mechanical valve replacement about 11 months ago and I’m doing great with it.

I asked my doctors to increase my dosage so I can eat more vegetables and healthier stuff (e.g. greens).

The inconvenience is a really small price to pay in my mind. Millions of people take prescription drugs daily and many also monitor themselves daily (e.g. patients with diabetes).

My employer’s insurance paid for a self-test INR system and I use it weekly to keep my INR on track.

However, like any drug, Coumadin does have side effects and I agree the effects and treatment for everyone is different.

I’ve had two back to back AVR surgeries (Aortic Stenosis) in 8/2000 and have a mechanical St. Jude’s valve I’ve been on Coumadin for almost 9 years. I was 53 years old when I had the surgery and am 62 now. The drug Coumadin hasn’t been a big deal but about 6-8 months ago the nosebleeds started and they are a big deal when you cannot go to bed at night. They start when you least expect it during the day as well. I’ve gone for three cauterizing treatments so far (last one a week and a half ago) and need to make another appointment because the nosebleeds started up again.
My health is okay but I tire very easily these days. My cardio told me during my last appointment that the valve pressure has increased again and that that is not a good sign. I thought I’d get 30 years out of a mechanical valve. Not so I guess. I am dreading a third surgery since it took me about 18 months to recover from the first two and I am older now. It gets harder and harder with age.

Hi Mary Anne, I ave been on COUMADIN now for 11 months. After the operation is the hardest part but if you think about what would it be like if you didn’t have the operation. After a couple of mounths of testing and getting your INR stabilized it will seem just like another day. I have my cell phone alarm set for 8 PM and that reminds me to take my 7 MG’s. I call it my life line candy. It won’t be as bad as you think. May God Bless you and be with you. I had this done on my 67th Birthday. worker@att.net

Marie Anne:

I lived on Coumadin for 8 plus years. During this period my sister died from an open vein opening while she was home alone. She also was taking Coumadin because of a heart condition. As a result of her death I started to investigate operations for afib since that was my heart condition at the time. Because of my weight I decided to wait until I lost some of it.

However, a year passed and I did nothing about the Afib, taking Coumadin each night, until I developed an Aortic Valve Problem which needed replacement.

My worry during the period of taking Coumadin and the valve operation was intense simply because I feared being in an accident which, possibly, would end up with me bleeding to death because of an open wound. Coumadin is a BLOOD THINNER.

Last year while humming :”Stairway to Heaven” and being driven to the Heart Hospital In Plano Tx., I realized I could not do anything about the operation which turned out successful. The treatment in the hospital was so uplifting that I did not wish to leave it.

I should say, I instructed the doctor that I did not want a Mechanical Valve, because that would have ended up with me taking Coumadin for the balance of my life. Thankfully I had a “pig valve” as a replacement for my Aortic Valve. As an aside, my Afib procedure was completed during my valve replacement surgery. It also was successful. I no longer have Afib. I no longer take Coumadin.

Jerry

At age 59 I am also facing surgery for my severe aortic stenosis. I told the doctor that I want a pig valve due to the fact that Coumadin scares me to death. Pardon the pun! I have not had any symptoms yet and my doctor seems to want me to wait until I pass out or get out of breath, etc before I actually have the surgery. I don’t think I want to wait as sudden death is also a symptom. I see the surgeon for the first time tomorrow and and am very eager to ask him questions. My Cardio doctor said that I am too young for a pig valve and too old for the Ross Procedure. I talked with a man in the waiting room before seeing the Cardo doctor and I could hear his mechanical valve. He had had it for three years and he says that it actually keeps him awake at night due to the noise. He also said that he has had two brain bleeds due to the Coumadin and gets dizzy spells. Just wondering if others with the mechanical valves can actually hear noise? This is such a hard decision. Please email me with personal experiences of having the mechanical valve. janies-attic@hotmail.com
Thank you, Janie

Hi Mary Anne,
I had an aortic valve replacement on March 5, 2009, and I requested a bovine valve because I didnot want to be on coumadin any longer than I had to. I’m a lover of green vegetables and that was the hardest thing to accept. On coumadin, you cannot eat foods that contain vitamin K. Due to atrial fibrillations, I will have to stay on coumadin longer. The other inconvenience was having my finger stuck every 2 weeks for prothrombin times to measure the proper dosage in my body. Bovine and/or porcine valves are recommended for those of us over 50. Mechanical valves are for younger people yet they have to remain on coumedin for life. That I would not like!

I had an aortic mechanical valve put in April 2 2009. It was a bicuspid valve that was functioning normally but I required surgery for and anerysim being 45 and having the strong possibilty that my valve would become diseased decided to have it done. The problem is being on warfarin. I want some plastic surgery done and it can’t. Every plastic surgeon I go to says I am too high risk to bleed and will not follow the heparin guidlines my cardiac surgeon wants him to follow. The plastic surgeon wants me off coumidan 5 days. So I am stuck nothing I can do about it. Thats not something that they discuss with you before surgery that other surgeons will be hesitant to operate on you.

I am a 49 yr old and have had 2 replacement surguries. One for the Mitrol valve and then a second for the Aortic. I find the hardest thing I have faced living on Coumadin, is trying to lose weight. The diet as you know can be a little hard to just make changes. But otherwise I live my
life just as I would have before. No restrictions. Of course I discuss what ever is extreme (like tattoos) with my doctor first.

I have been on Coumadin (I switched to generic Warfarin a couple months ago and experienced no changes) for almost 9 years without any bad side effects. I have my own Protime machine and have been hometesting for 8 1/2 years without any problems. Last year October I started having nosebleeds with a normal INR and that required a cauterization by an ENT, but that cured the problem. For the rest I can do what I want, when I want. I exercise about 4-5 times per week, and even with a 75% organic foodplan find it difficult to lose weight. But hey, I am 62 years old. I should lose 40 pounds but I eat what I want and don’t crave junk foods. I feel healthy. I eat a variety of greens, fresh fruits and whole grains every day and I dose my diet, and not the other way around. I also take quite a few whole food supplements. I also have a couple glasses of wine every week, but for the rest I don’t drink much and never have.

Hi Mary Ann:

I’m on comuadin and the only side effects that I have is bruising easily. You would have to monitor the foods(green vegetables) that you eat because they have Vitamin “K” and can thin your blood as well. I have to be monitored(blood tests-inr) every two to three weeks, to make sure the consistency of my blood stays between 2 and 3. That is annoying. But, thank God for medical discoveries in helping us.

I received an aortic valve 12 days before my 31st birthday. It will be one year Aug. 4th 2009. I have to say my wife and I wrote a list of pros and cons many nights before deciding on a mechanical valve. Regardless of the medication, your life will be altered for life. You will appreciate anything and everything that you’ve taken for granted in the past. I honestly do not have a problem with the medication, after awhile you figure out what foods impact the thickness of your blood. I have a PT/INR machine since I work on the road and that definitely keeps my mind at ease. My insurance took care of the machine and strips, I highly recommend looking into obtaining your own instrument. What sold me on the mechanical valve after extensive research and considering the opinion of all my physicians was the fact that the valve would last a lifetime. As long as I did my part the probability of my valve failing would be less of a probability than my congenital valve disease in the first place. Thank God for technology and Adam’s Blog it has truly been a big part of my mental and physical recovery. Godspeed to everyone in need of open heart surgery and God Bless those who “keep on tickin”.

I am 47 years old. I had a On-X valve installed on May 4th 2009 (aortic valve). For six weeks afterwords I felt great, exercising – new lease on life and all. Coumadin level was low dues to eating green salads with spinach 4 days a week. On the 6th week the room started spinning like mad and I nearly passed out and was taken to emergency. Thank God I was smart enough to lay down on the ground. They checked everything and said it was not my heart and I had vertigo. I thought that was rather odd. My Dads wife had the surgery 20 years ago and said it was a panic attack. She went to the hospital six times thinking she was dieing and it ended up being all in her head. I believe that’s what happened to me. Subconsciously you worry if your going to be OK and it finally caught up to me. It is good to have a site like this that helps you get this off your chest and share. I remember the nurse telling me some things I might experience once I left the hospital. She mentioned Panic attacks and I thought to myself “Ya right” – well it can happen to anyone. Please get the word out that “You are good to be OK” I still feel dizzy once in a while but I tell myself its all in my head and I am OK.

I am 26 years old and have been on coumadin for about three years due to pulmonary embolisms. I actually take warfarin the generic px for coumadin. Being on coumadin itself is fine. No problems. However, it is something always in the back of your head. I worry about car accidents, falling down stairs, or anything that could cause injury. I play softball and worry about getting hit in the face with the ball causing a bloody nose. Its scary at times, but overall the drug itself has ZERO side affects. Getting the inr’s is good for me because I get a longer lunch on those days!

Hope I am not too late to respond! I had my AVR Feb 2008 at 56 yrs. I choose a porcine valve. I did not want to be on coumadin, but that definitely was not the only reason. The TICKING with the mechanical valve, would (with all respect to mechanical valvers) drive me insane! I just do not have the personality for it. I know I could not live with that from day, to day. I think it’s wonderful, if you can, but for me it’s no go! With the coumadin, I would be worrying about internal bleeding. I have extensive diverticula, and don’t think it would have been a wise decision. The reality of this surgery is THERE IS NO PERFECT VALVE! Not yet anyway. It is a trade off. I may need another surgery, if I don’t die from something else first, but I have to have hope, that medical technology will have an improved procedure, vavle or both!

Good luck, to you with your AVR, and your valve selection. It’ a tough decision to make!

Unexpected Con. My husband was on coumadin for 4 years for AFib. He never had complications. However, one day at the office he fell and hit his back on the bookcase. There was no open wound where he hit the bookcase. At the time, we thought there was not a problem. But, we went to the doctor to make sure.
They took an x-ray and there was internal bleeding. He was rushed to the hospital
where he spent 5 days recovering from a pneumothorax. (Bleeding around the heart with a small tear at the base of one lung.) No one ever warned us in advance about the possibly of internal bleeding.

I am now 60 years old. On Jan 15, 2009 I had a bovine valve installed to replace my aortic valve. I chose a bovine valve because I did not want to be on coumadin for the rest of my life. Two weeks after my release from the hospital I had a pulmonary embolism. As a result I was on coumadin for just over 6 months. My fear was forgetting to take it. So each morning I would put my am coumadin and other meds in one bottle to take a breakfast and my bedtime coumadin in another bottle. I then put the bedtime bottle under my pillow. I never forgot to take me coumadin during those 6 months. Hope that tip helps you remember to take your meds.

My name is Tara, I am 35 years old. I had an aortic valve replacement on March 25th 2005, today is January 17th 2010. I chose the mechanical valve for one main reason! The tissue valve may not have lasted the rest of my life as I was quite young and still am…where as the mechancial valve was guaranteed to! Needeless to say, I did not want to have another surgery later in life. I was told that the tissue valve was expected to last about 20 or so years…after doing the math….I went with mechanical!
I am on warfarin, have been since! The biggest pain in the butt for me is the needles, I have one good vain to draw blood from and it’s been poked at so much! Side effects include…sensitive to sun and temperatures…when I stand for too long, my toes get numb…headaches (but I’ve always gotten them)…some fatigue…I bruise easily…menstrual cycles are REALLY bad (having a partial hysterectomy next month for relief) and takes long to stop a bleed from a cut! Not too bad for my life
Now for the restrictions…NO extreme sports (really want to play hockey)…I have to limit my intake of green vegetables (vitK…and I love my greens)…can’t take many over the counter meds (a blessing in disguise) well, I can but I risk having to go in for INR’s everyday and take heparin shots until my blood is right again! so, no thanks! lol…uhm, no more kids, pregnancy not a responsible option (another blessing in disguise! lol) I have 2 wonderful kids already!
Well, I should also mention, most of the symptoms and restrictions are mild and dont really impact my life too much, Only a couple are bothersome.
Hope this helps you!

Hi, I wish you luck in choosing a valve. I was born in 1947 with serious heart defects, Doctors knew something was wrong with my heart, but they didnt know what. Thanks to a great mom, I grew up. I have a huge hole in between 2 chambers of my heart and a little piece missing out of my mitral valve. I did not have surgery until I was 34. They put a Teflon patch over the hole. I was married then and had my daughter at age 39. Then I had to have my mitral valve repaired. After this, I went into atrial fibrillation and I was told I’d have to be on Coumadin for life. I was in my late 40s, I think. I tried to have the afib repaired in a procedure called radiofrequency ablation. All the arrythmias were cured except ONE (it is behind the Teflon patch, and trying to cure it could have cause a stroke). I am divorced now and alone. So I am on coumadin for life. I have had nosebleeds, had nose cauterized. I have to be careful in winter (live in an apt., no control over heat). I use saline spray & Vaseline. My dose of Coumadin right now is very high and Im always scared, since I’m always alone. However, taking it and getting frequent blood tests (arm) at my doctors office is better than having a stroke. I eat a varied diet, whatever I can afford. I also have bipolar disorder, diagnosed late in life too. So I take 12 medications a day and see lots of doctors and a therapist. I’ve had tension headaches all my life and the worst thing about coumadin (I dont mind the blood tests) is that I can’t take aspirin or most pain killers. I take a prescription from the doctor, but am limited to how many pills a day. I had to go on Social Security Disability Income for both the heart condition and the bipolar disorder in 2005. I wish you well, I did not have an option in choosing a valve, but I did have a beautiful daughter before I was on Coumadin. She is grown now and relocating far away from me. So I just worry about bleeding, because I have no one to live with or check on me. I don’t drink or smoke. I just lost weight and that might have affected my Coumadin, the level is over 4 now which is high, but I have no choice, I was not taking enough. Too poor for a home machine. To whoever is deciding, if you can avoid coumadin, do so. It interracts with everything, I am scared all the time. I will pray for all of you with heart problems.

I had my first aortic valve replacement almost 39 years ago now. I had it replaced last year with another mechanical valve. So I have been on coumadin for nearly 39 years. I have lived a pretty active lifestyle. I have run, skied, biked and rowed all my adult life. Other than the minor hassle of regular testing I have never really felt that coumadin was anything but inconvenient.

A few times I have had to have minor surgery and it was neceessary to go off coumadin and have Luvonox injections before and after the surgery, which admitadly is a little more inconvenient, but that is all it is inconvenient. It was never a big deal to me.

At 59 and faced with the replacement surgery I did not hesitate to choose a mechanical valve. I note that there one comment about the clicking, but that is not really a factor. It is not that noisy and only rarely do I notice it.

Open heart surgery is not exactly fun, but not as bad as one might think. I jusd found it to be very uncomfortable, but certainly not extremely painful. But, even so it is very disruptive and I would just as soon not have to look forward to it again when I am much older.

Anyway, I don’t regret my decision, my choice, but everyone has to make the decision that is best for them, just happy that we are fortunate to live in a time and place where have these choices.

Hello,
I had Aortic Valve Replacement on 02/04/2010 and have been taking Warfarin since. I have had no problems either except for the very uncomfortable drawing of my blood for INR. I am cirrently looking into the INR for home, but until then I have draws once a week. It is scary trying to find out how much is norm for me. My INR should be 2.5-3.0, but it has only been in that range twice since I came home. It is always lower. Anyway, I am so thankful to have made it through surgery that the inconvenience is like a blessing….I am still here.

Hello

I had my aortic valve replaced with a St. Jude mechanical valve in January of 2005 when I was 46 years old. My Mother had the same surgery in November of 1996 at 75 years old. She also had a St. Jude valve implanted. We are both taking Coumadin and we both have our own INR test meters. My surgeon recommended getting the meter 6 months after my surgery and after using it for 3 months I helped my mother do the paperwork to get one too. My insurance pays for the meter and test strips which we obtained from Philips Cardiac Services ( formerly Raytel ) and as for mom, Medicare pays for her meter completely too ( must have a mechanical valve to qualify for this ). We both test our blood weekly and call our results in to the Philips testing service. They fax the results to our doctor’s office.

I never really worry about what my INR will be when I test because when testing so frequently it is really easy to adjust if necessary. There is an INR nurse at the doctor’s office that calls me if my test is high or low but, having done this for 5 years now, I am quite able to decide what change in dosage I should make even before talking with the nurse. I do however keep the medical professionals “in the loop” with all decisions regarding Coumadin because they write the prescriptions.

My mother recently had an echocardiogram that showed a stenosis was developing with her mechanical valve. I asked the cardiologist how this could be because the mechanical valves are not supposed to wear out. He said that scar tissue was growing over the top of the valve and closing it off. Her valve is getting “very tight”. Since mom is 88 yrs old now he said he would not recommend another valve replacement surgery and mom doesn’t want to go through it again anyway. So for now she continues taking Coumadin and will just wait for the valve to give out. She is otherwise in very good health. (10 years ago when her doctor wanted her to have a colonoscopy they took her off Coumadin for the procedure and regulated her with Heparin. Then they made her stay in the hospital for 10 days until her INR was regulated again. They do things a lot differently now with having Lovenox injections that you can take at home) I now wonder if my valve will develop scar tissue also. The main reason that I chose the mechanical valve was that I didn’t ever want to have the surgery again. Now I’m finding out that there are other biological things that can cause the valve to malfunction. They really don’t give you all the information you need to make a decision. I think if I ever have to get another valve it will be a tissue valve. That way when the tissue valve wears out I might be able to go with the valve that gets inserted through a catheter ( if they have it perfected by then) There really is not perfect fix for aortic stenosis . I’m happy to be here still though and I’m not complaining.

I haven’t had any complications due to Coumadin and I really don’t limit my activities at all. One interesting thing did happen the first week I was home after the AVR surgery. I had a nurse coming to my house everyday to draw blood and check my INR and my surgeon was monitoring the results until my regular Dr. was able to take over the monitoring. Somehow they got the dosage way too high and I ended up with an INR of 7.0 ( very high – for those of you that don’t know) This caused everything I ate to taste like baking soda. Even Pepsi tasted like baking soda. I started to panic thinking that it would never go away. This only lasted about 24 hrs. but it was really disgusting.

I ride a motorcycle ( and a dirt bike ). If I get small cuts they do seem to take longer to heal than they used to. I eat whatever I want and adjust the Coumadin accordingly. I really hated having to waste so much time at a clinic getting my INR tested so I’m very appreciative of the home testing options. But all things considered, I think I would go with a tissue valve if I could do it over again. Especially considering my family history of scar tissue formation. So my decision isn’t completely based on taking Coumadin. The surgery was a really terrible experience but if the mechanical valve only lasts me 15 to 2o years then I’ll be having that experience again anyway. If I could have a guarantee that the mechanical valve wouldn’t fail then it would be worth taking the Coumadin since the inconveniences have been minor for me. This has been really long but it does involve 2 people – I hope all this is helpful to someone else.

Hi again,

I want to give some additional information regarding my mothers’ Coumadin experiences. Being on Coumadin has been much more of an issue for her than for me and, recognizing that, I must admit that I will probably have more issues with Coumadin as I get older.

Mom had her right hip replaced in June of 2007. While her surgery went well and there were no complications with the articficial hip, she did have complications related to Coumadin. The day after her surgery she developed serious bleeding from her incision and needed to be transferred to the ICU for 2 days and have 9 (nine) pints of blood infused before they got it under control. They had resumed Coumadin therapy too soon after the surgery. Over the next 6 (six) months she was readmitted to the hospital 3 times for problems with her electrolytes being out of balance – potassium and sodium too high or too low. Fortunately she made it through all of that and her surgeon calls it a delayed success. Still, it was not any fun for her and Coumadin was a definite complicator.

Also, even though mom does have her own INR test meter, the older she gets the more difficult it is for her to do the test by herself and I frequently supervise and help her do the testing. Getting a drop of blood is often difficult becasue of general poor circulation, cold hands etc… So, for elderly patients, even if they qualify for a test meter they may still need assitance using it. Yes, you can still go to a clinic and have the testing done once a month or more but I can still remember how much of a hassle that was for her when she was doing it.

Mom had actually requested a tissue valve shen she had her AVR surgery at 75 years old but but the surgeon had to use the St. Jude mechanical valve because her aortic opening was so small that the tissue valves he had available were to large to use. Anyway, I think mom would have had a lot less trouble the last 13 years if she didn’t have to take Coumadin. But like I said in my previous post – Coumadin has not been a problem for me in my own situation.

Aged 48, I had my mitral valve replaced last year (24 June 2009). All echocardiograms indicated that there was a good chance that repair, rather than replacement would be enough, but as I started waking up in Intensive Care, I heard the clicking and thought oh, fiddle, and went back to sleep.

After that, I never looked back. The clicking gets less noticeable as your heart gets stronger, and now, 9 months later, I hardly notice it. It is more noticeable if your mouth is wide open, so maybe just keep your mouth shut when making love…

As to the warfarin, it is not a real problem. The worst issue was going on my honeymoon to Mexico and on my return, my INR had gone to 5.8 (the range for a mechanical valve is 3 to 4). The nurse reckons it was the change of diet (less greens and veg), and maybe three margaritas instead of two…

But think of it this way: You have had an extremely severe health problem. Would you sooner have cancer? Or just live a life that doesn’t differ much from what the doctors recommend everyone should follow: a stable diet, with a relatively low intake of alcohol. I know my answer.

One issue I have been warned about is eye protection. On high doses of warfarin, a knock in the eye could result in you losing the sight in that eye. Worth thinking about in my case, as I play competitive tennis to a relatively high standard for my age, but all you need is to find suitable protective eyewear. In my case it is difficult, as I have a relatively small nose, and so, with the glasses close to my face they steam up a lot, so I am still looking for the perfect eyewear.

Does that sound inconvenient? Yes, it is, but then most doctors would recommend that you wear protective eyewear to play tennis EVEN if you are not on warfarin. No, Nadal doesn’t, but then I am much more likely to mishit a ball than Nadal, and have it deflected into my eyeball.

As to needles, I hate them but they aren’t that bad really and I get on well with the nurses, so there is something cathartic about having regular contact with the nurses. We know all about each other’s dogs now.

So get positive. You didn’t have cancer, your life expectancy is about average. Just get on with life. Live it to the full and just be a bit more careful if you are on warfarin.

In the UK, you don’t have quite so much choice over what valve they will use. But who do you think is the best person to take that decision? You or an experienced surgeon?

Yes, I thought so…

Andrew

Hi again,

I want to give some additional information regarding my mothers’ Coumadin experiences. Being on Coumadin has been much more of an issue for her than for me and, recognizing that, I must admit that I will probably have more issues with Coumadin as I get older.

Mom had her right hip replaced in June of 2007. While her surgery went well and there were no complications with the articficial hip, she did have complications related to Coumadin. The day after her surgery she developed serious bleeding from her incision and needed to be transferred to the ICU for 2 days and have 9 (nine) pints of blood infused before they got it under control. They had resumed Coumadin therapy too soon after the surgery. Over the next 6 (six) months she was readmitted to the hospital 3 times for problems with her electrolytes being out of balance – potassium and sodium too high or too low. Fortunately she made it through all of that and her surgeon calls it a delayed success. Still, it was not any fun for her and Coumadin was a definite complicator.

Also, even though mom does have her own INR test meter, the older she gets the more difficult it is for her to do the test by herself and I frequently supervise and help her do the testing. Getting a drop of blood is often difficult becasue of general poor circulation, cold hands etc… So, for elderly patients, even if they qualify for a test meter they may still need assitance using it. Yes, you can still go to a clinic and have the testing done once a month or more but I can still remember how much of a hassle that was for her when she was doing it.

Mom had actually requested a tissue valve shen she had her AVR surgery at 75 years old but but the surgeon had to use the St. Jude mechanical valve because her aortic opening was so small that the tissue valves he had available were to large to use. Anyway, I think mom would have had a lot less trouble the last 13 years if she didn’t have to take Coumadin. But like I said in my previous post – Coumadin has not been a problem for me in my own situation.

Dear Mary Anne,
I just had Mitral and Aortic mechanical valves replaced in February of 2010.
I’ve been on 10mg of coumadin nightly since 1999 for atrial fibrillation.
I have had no problems with coumadin. Sometimes I would bump myself and bruise if my blood was too thin. If you have your monthly cycle still you have to be careful. I can honestly say it has not been an issue. Good luck to you.

Thanks To ADAM!!!!!!!
Your website has been very informational and definetly a comfort to me and to many other valve replacement recipients.Thank you again. Sincerely, Eileen

I had AVR at 58 in April of 2009. I bruise more easily than before, but have not experienced any major bleeding issues, although I bike ride regularly, and am on a moderate weightlifting program. The monthly testing is inconvenient, but a lot less of a hassle than another surgery. I have an occasional beer and have not really changed my eating habits. All in all if you are under 65, it’s probably the right way to go.

Hi Adam:

First off… Thanks for the book. It really helped me.

I am having aortic valve replacement, actually, my surgery was scheduled for today. Right now. As we speak i should have been on the table…. Now i have to wait till the 24th.

Anyway, my question is… I decided, at the time, to go with a mechanical valve. I am 48 and in good health, beside this one little problem. I was okay with my decision on the valve. and the warfarin. But now i am thinking, is it the right one for me. I don’t want to live in a bubble. I don’t want to be afraid to do something, just in case i might fall and bleed. I am not the most out-going person, but that might change after the surgery. I do ride a motorcycle. Will i have to give that up?

I choose the mechanical valve because i don’t want to go through this again.

I had open heart surgery when i was 8. In laymens terms, I had a narrowing of the aortic. My scar is under my left breast around to my back. It’s pretty big. But i don’t even notice it. I also have two scars from two surgeries. I had a grapefruit tumor removed and the other was a hysterectomy. But, the surgeon was excellent. So, with this scar down my chest, I will be connected… LOL.

So i am a little confused now about my decision. My surgeon said I can change my mind up to the time I am wheeled into the operating room. I just want to make the right decision for me. Thanks for listening.

I am from Vancouver Island, Canada.

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.