Hello Everyone

[MantasV]

Gladly I have found this forum
My name is Mantas yep unusual (male)
I was born with Aero Stenosis lived with it for a long time. But I had my surgery done more than 6 months ago and I still have some question to ask about life with Warfarin activities and so on. I should know all this but honestly I don't know
So When I started taking Warfarin the doctor said I should not drink Cranberry juice but he did not told why? Is it only juice that I can't drink? can I eat something that has cranberries or other related drinks with cranberries ? Currently I am avoiding eating something with cranberries because I am unsure will that affect me
also is it true that you can get addicted to Warfarin that's why its called a drug not a medication?

About mechanical valve doctor said that it should work for life long and will not need replacement but I read few other threads that some people had heart failures and had to have their valve replaced again also what could cause the heart failure ?

Having baby is replaced valve has any impact on that? can my baby born with a same diseases as me ? or some other disease?

After surgery I was very depressed about my scar and I though I will never have a girlfriend anymore because of my scar. But now I am getting use to it but still how can I hide it or how you hide in your ways? Doctor said I should not have a tattooed my scar because it can cause blood clots is anyone have had a tattoo on the scar also I am very scared about the sound that valve makes it is bit awkward when I am in a college or somewhere that its silence and I can actually hear the beat then I start making some noise just not to attract attention because for some people it may be cool and for others gross.

I am quite young still studying in college and I want to keep myself fit but I am also pretty scared that I will push myself over the limitations.



I will update this thread if I have more questions.

 

[Duffey]

Hi, and welcome, Mantas.

I don't have a mechanical valve, so I am not on coumadin, and can't answer your questions in regards to it. Maybe someone else will come along and provide you with some answers. However, I feel confident in answering that warfarin is not addictive and the terms drug and medication are used interchangeably.

Sometimes tissue growth impedes the action of a mechanical valve, but I think that is uncommon, so I wouldn't worry too much about it.

Was your valve replacement due to a congenital issue? A congenital issue might affect any children you may have, but again that it uncommon, so I wouldn't worry about it.

Has your cardiologist put any restrictions on your activities since you had replacement? If not, then I would guess that you're good to go.:smile2:

 

[dick0236]

Hi Mantus and welcome. I think the warning applies to cranberry juice and not to whole or jellied cranberries....which I continue to enjoy from time to time. BTW, I drank cranberry juice and ate cranberries for about forty years after surgery and before these warnings came out without problems.

Your mechanical valve should last a lifetime although no guarantees. Heart failure due to issues other than valve failure can still occur. There is no way I would have believed my valve would last as long as it has.....but I ain't complaining.

If you have a bicuspid valve , the defectr can be passed to your children, although the risk should not be exaggerated.

I have never completely gotten over the scar thing and usually wear at least a T shirt rather than go bare chested.

 

[MantasV]

Well My Doctor who operated me said that I just should live my normal life the thing changes in my life is that I only need to take Warfarin.
But other Doctor said that I still have limitations and I can't do that and that.
Confused.

 

[MantasV]

I do not worry about scar when I wear t-shirt but summer is coming up and the days will get hotter and hotter also I may want to go to some kind of lake or beach just to swim in the water and I don't feel like I would want to take my t-shirt off especially if there is some people around I know some people don't care what others think and do whatever they want but I am a little shy...
also does breast bones heals properly after more than 6 months recovery ? will the bones be strong as they were before or they will remain weaker?

 

[Agian]

Mantas. It sounds like you were not given a lot of information about Warfarin. I'm pre-op, so I am not on it.

Is it OK if I put in my two cents worth?
In relation to the noise, it may be that you can hear it, but those around you can't. I would ask a family member if it can be heard and under what circumstances.
As for the scar, if it bothers you, you could always see a cosmetic surgeon. There are laser treatments available as well.

 

[clay_from_nj]

Heck, I take off my shirt and show off whenever I can - well, there's not really much opportunity, but still. Before my AVR, I was MUCH more embarrassed about my physique than any scars. Start hitting the gym and before you know it, you'll want to be showing off, and never mind the scar. Shopping at Target recently, I noticed our cashier's heart surgery scar and asked her about it (yeah, I talk to strangers like that) and we had a nice little chat about our different surgeries. And as far as how strong your bones will be, I think that most bones heal at least as strong as they were to begin with, maybe stronger, plus, it'll be wrapped with stainless steel wire for reinforcement.

 

[njean]

Hi Mantas and welcome to the forum.

Speaking as a person who has been on coumadin for almost 39 years now, the drug has never intimidated or kept me from eating the foods I like and enjoy. I do think that "moderation" is the key here. If you want to have a glass of cranberry juice once in a while, I don't think that it will impact your INR at all. Now if you drink a glass every single day, well, then it probably will. Like I said moderation....that's the key.

Many people are told also to avoid greens because they tend to lower your INR! Nonsense! Eat what you enjoy....don't overdo it and you will be fine!

And as far as sports or physical activity is concerned, in my younger years, I led a very active life, i.e., jogging, hiking, bycling, archery, ATVing. These days, because I'm older and realize my limitations, I concentrate on more passive activities such as gardening, walking, and playing with my dogs.

Keep in mind that you were given a 2nd chance at life, embrace it! Don't spend your time worrying about the what if's.

And as far as my OHS scars, they are my battle scars.....I fought hard and I wear them proudly!

Take care and wishing you a wonderful life ahead!

 

[mbeard]

I know i am a "newbie poster", for Mantas, but I am like Agian, You have many questions, and there are people here, who have intimate knowledge , and also answers.

I have a friend, who got sick in the past two week. She is 70, and had a valve replacement 3/1/2 years ago. She is going to have 2 valve replacements, mitral, aorta. She is not doing well. She hoped her valve wloud last ( pig valve) many years. She is in guarded condition .





Ve

 

[dornole]

If you are concerned about showing your scar while swimming you could always wear a rash guard or SPF swim shirt, you will fit right in with surfers and people who burn easily. Whatever makes you comfortable.

You don't have to worry about getting addicted to Warfarin.

 

[ski girl]

It doesn't really matter if you get addicted to warfarin - you're on it for the rest of your life anyway!

As for the sternum, it's probably stronger now than it was before. At six months you have absolutely NO upper body restrictions so get back into it!!

And the scar . . . it does fade over time. There is a stigma with OHS, particularly when you're young - I'm early 40's and I notice that people who don't know me assume that I'm weak and unhealthy because I had to have OHS. Then I tell them I'm training 10-12 hours a week for three different sports and that tends to shut them up. When you're ready to show it off, do so - until then the rash guard top will do the job!

And do keep asking questions on here, as others have said it sounds like you weren't given very much info!!!

 

[AZ Don]

Re. the scar, it was mentioned not too long ago that silicone strips or gel can help to reduce the redness and to flatten that scar. I looked it up and there are some studies indicating it actually works, though perhaps not as well as what a Dr. can do such as corticosteroid injections. I bought Kelo-Cote Advanced Formula Scar Gel and am trying it now. Although I don't feel proud of my scar, neither am I ashamed of it. I guess I've had time to get used to the idea because I've had a bigger knee scar for years and I don't even think of it anymore. It's not nearly as noticeable as it was the first couple years.

 

[pellicle]

Hi

Well My Doctor who operated me said that I just should live my normal life the thing changes in my life is that I only need to take Warfarin.

that is about exactly as I see it.

But other Doctor said that I still have limitations and I can't do that and that.
Confused.

I understand the confusion, the answer lies in the view many people have of doctors: they are conditioned to believe that the doctor knows. Sadly the truth is that there is sooooo much to know that not all doctors actually know. Worse than this - many doctors are unable to admit they don't know and latch on to the first BS story which they here (which is precautionary).

There are really two main things which get in the way of managing your INR and your warfarin dose:
- vitamin K intake (database of vitamin K in foods)
- things which disturb or regulate the cytochrome pathway (for disposing of toxins)

Cranberry has very low vitamin K levels, but it has been reported that it can destabilize the drug in the body (and I assume by the cytochrome disposal aspect):
http://www.medscape.com/viewarticle/545631

Review and analysis of the literature revealed that ingestion of large volumes of cranberry juice destabilize warfarin therapy

If you read some of the stickies on the anticoagulation forum here you'll (sadly) find heaps of stories people have experienced with the low (often miserable) level of comprehension of proper anticoagulation therapy in the professional medical area.

I'm sure you'll be fine with everything, but it does take time to come to grips with it all. Don't fret or panic and I'm sure if you ask any questions about things here that someone will lend a hand fairly soon.

Best Wishes

(and yes, I'm on warfarin too and no its not addictive at all)

 

[neil]

just wanted to say welcome to a fellow brit, looks like you have been givin good advice already from the posts above

 

[ChicagoMammy]

Hi and welcome.

I'm a mid-thirties female. I had my first surgery when I was 28.

The scar: I've never been particularly modest, but after surgery I went from one extreme of hiding it to the other of wanting to show it off. We've earned our battle scar. I've settled in the middle now in that I truly don't care if it shows or not. I bought a big necklace to hide the worst of it initially, now I wear a much smaller necklace but not to hide it on purpose. My scar has faded a lot over the years. It is also a very neat scar. I get compliments on it from other heart patients and nurses all the time. The ones in my hospital can tell what surgeon I had from it because he's known for his tidy scars - ha! Anyway - in all likelihood you will care less and less as time goes by and not modify your clothing choices because of it. People really are not going to be put off by it. It's a curiosity rather than something of repulsion.

Coumadin: I've been on and off it for 7.5 years and will be for life now. The only pain about taking it for me is the INR checks. I started the sign-up for home testing but the company lost a laptop with my SSN on it so I haven't thought about signing up again. I will likely investigate further during recovery for my upcoming surgery - we'll see. I've never been very sporty though, but unless you're playing heavy sports you should be fine.

Baby: I don't know if your disease is congenital or not. Only your doctors can answer questions like that. Also even if is the odds would be 50-50 of you passing on a bad gene. I have a non-cardiac genetic condition, the medication for which led to my heart condition. My kids had a 50-50 chance of inheriting my crappy gene and luckily I've 3 healthy kids.

Valves: They don't calcify like tissue valves do - that's the plus. Beyond that I'm not sure. Others can weigh in more.

 

[tom in MO]

Per cranberry juice, it's only a problem if you drink a lot of it. A glass or two a day won't hurt. Same with eating cranberries, moderation in all things is good. A cranberry muffin won't hurt, but eating two cans of cranberry sauce in one sitting should be avoided. I have a glass of cranberry juice and slice of cranberry bread or a muffin with no problems.

Per warfarin, drug and medication mean the same thing. Warfarin is not addictive.

Per your kids, aortic stenosis can be cause by different things. If you have a bicuspid valve like I do, they say there is a chance it can be present in first degree relatives (i.e. mother, sister, daughter.) This chance is not high enough for US insurance companies to pay for testing. I wouldn't worry about it.

Per the scar, you need to start hanging out with a rougher crowd then you'll just fit in. It will fade away and be less noticable. It's really a badge of honor/survival. To paraphrase one sweet Brit teen who had many open heart surgeries starting at a young age "Don't look at my scars and feel sorry for me. Look at them and feel happy at how far I've come."

 

[clay_from_nj]

There is a stigma with OHS, particularly when you're young - I'm early 40's and I notice that people who don't know me assume that I'm weak and unhealthy because I had to have OHS.

You just gotta get more muscles! No one assumes I'm weak and unhealthy, because they see my build before they see the scar. I'm no bodybuilder or athlete, but I do have a 30-inch waist and 15% body fat and am in the process of building up some muscle. I think that being relatively fit and having an OHS scar just makes you look tougher.

 

[ManiSham]

Hi Mantas,

I've had my mechanical AV for almost 9 years & I'm 28 now.
The doctor would have asked you not to drink cranberry juice since its high in vitamin k and that is a vitamin that makes your blood thick hence may lead to blood clots. My doctor has actually asked me not to eat green leafy veggies and unfortunately I haven't eaten any in 9 years (it may sound crazy but I didn't want to take a risk) however that is the only limitation I have had so far due to taking warfarin.

I had a congenital VSD which led to my valve issue but my daughter has no problems as such. I generally use concealer to cover up the top part of the scar if I wear anything with a low neckline or a necklace with a big pendant (I don't think those will work for a guy though )

 

[ottagal]

Hi Mantas,

I've had my mechanical AV for almost 9 years & I'm 28 now.
TMy doctor has actually asked me not to eat green leafy veggies and unfortunately I haven't eaten any in 9 years (it may sound crazy but I didn't want to take a risk) however that is the only limitation I have had so far due to taking warfarin.I)

I am surprised your doctor asked you to not eat green leafy vegetables! Check out this information sheet that actually says you should as part of a consistent diet. I always remember reading on this forum that you 'dose to the diet and don't diet to the dose'. I am sure other members who actually take Coumadin/Warfarin will provide input.

http://www.pamf.org/anticoag/patients/handouts/Warfarin_and_Diet.pdf

Here's the excerpt:

Do I need to avoid foods high in vitamin K?
No. Although vitamin K works against warfarin, it is an
important part of your
diet and actually helps
keep your warfarin levels balanced. It is okay to
eat as many vitamin K-rich foods as you like, as long
as you can maintain a consistent diet week-to-week.
Your warfarin dose can be
adjusted to take into
account your diet.

 

[Mentu]

Mantas, welcome to the group. With respect to the scar, you can always say you got it in a duel! Mine is now over four years old and has no color or swelling so it isn't all that obvious anyway. I sort of miss it.

My Aunt has used coumadin for many years and eats everything that she wants. She says that it is important to eat a consistent diet and your coumadin intake will adjust to it. My Aunt Alice says that eating a lot of something that you have not been eating can cause ones level to spike so one should try to avoid doing that. Eating moderate amounts of greens or whatever regularly should not cause spikes.

Larry