Questions??

[Jennsun]

Hello Everyone, hope all is well! I am new to this site and had a couple of questions. I am 29 I have had two open heart surgeries for valve replacement. The first I was 4 I received a pig vlave the second two years ago and had a cadaver valve put in. I am going to have to get it done again and I will have to have a mechanical valve. I am really unsure of this valve - I wil have to take coumadin for the rest of my life. Does it make you feel different, can you do what you have always done? What if you miss a dose? What are the side affects? Any information will be greatly appreciated. Thanks again!

 

[Christina]

Hello Jennsun,

Welcome, and you have come to a great site for any information you need about valve replacement. The people on this forum will treat you like family because they truly care about everyone who comes along and need support.
Anyway, your concern is with Coumadin. Well, let me tell you, Coumadin is not bad at all. There are people on this forum who have been on Coumadin for more than 25 years without any problems.
I am female and have had two AVR surgeries.
I have been on Coumadin for 18 months without any side affects. I did notice some hairloss in the very beginning but that got better within a few months.
It can take a while before the INR is stabalized, so I would advise you to find a doctor who has experience with Coumadin and knows his stuff about Coumadin. Not everyone is qualified! Coumadin can be tricky because it interferes with many things, like food and OTC meds. If you take too much Coumadin you could have a major bleed, and with too little you could have a stroke or a blood clot. This happened to me shortly after my first surgery. (Read my story in the personals)
I bought a Protime INR testing machine 6 months after surgery, and have been home testing for over one year . It is wonderful. cannot say enough great things about it. No need to go to labs anymore. I call the INR results in to my doctors office and they call me back the same day if any changes need to be made to the dosage.
It wasn't always this easy and I had to get rid of two doctors before I found this jewel. He was willing to work with me and trusted me to do my own testing.
Coumadin does not make me feel any different. I am able to do everything that I used to do. Just cannot do any contact sports that could cause a major bleed or so.
If you forget to take this medicine, it is best not to take a double dose, because it could cause a bleed. I have forgotten to take it twice so far and it takes a few days again to get up to the range where you need to be (2.5 - 3.5). I bought an alarm watch to remind me to take the Coumadin, plus my husband also reminds me daily. I take it the same time every day (6PM) and now it is like second nature anymore. Just when I am off schedule or when we come home after 6PM, that's when I often have had to take it late. At times I thought about it at 9PM, and that is acceptable to me. If I don't think about it until the next morning I don't take it.
More people will come along and give you their opinion of Coumadin, but let me assure you, it is not bad at all.

Hope this helps!

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

 

[RobThatsMe]

Hello Jennsun,

Welcome to the site. I had my AVR 2 yrs ago, and have been on Coumadin ever since. So far, no problems, and I seem to stay within my recommended range.

I would suggest that you read the Coumadin thread here on the site. Many questions about this drug have been asked and there are many responses posted.

I think you may also find that there is a new drug in final test stages that may make Coumadin a thing of the past in the not to distant future. The new drug is called Exanta, and it may make our lifes much easier in time.

Rob

 

[LUVMyBirman]

Hi Christina

You write: "I did notice some hairloss in the very beginning but that got better within a few months".

You and I both had two surgeries within the first few weeks of valve replacement. They attributed my hairloss to the stress.
Something to think about. It is also listed as a possible side effect of Coumdain so???

 

[Nancy]

Hi Jennsun-

Welcome to the site. This is a wonderful website. You'll find it a great source of info., support and comfort.

My husband has two mechanicals and has been on Coumadin for 25 years. It's almost like brushing his teeth now. He just has his routine and takes it at the same time every day, no problem. He gets tested monthly most of the time, sometimes sooner, depending on how his INR is. He goes to the hospital lab for testing, it's about 10 minutes away from us. Insurance covers this with no copay. His PCP, whose office is attached to the hospital gives him the dosage that same day, and he's good to go for another month or so.

He's been pretty active his whole life. Recently he's had some problems with his heart, but none of it was related to Coumadin. I think of all the meds he's had throughout his life, the Coumadin has been the most problem free.

 

[Guest]

I have about 170 pages of information about warfarin on my website www.warfarinfo.com

Feel free to e-mail me questions, but you get a lot more opinions if you post them here and I usually look over this forum pretty thoroughly.

 

[Jennsun]

Hello, Thank you all for making me feel so welcomed! Thank you for your insight and experience with coumadin. This is truely a wonderful web sight, I feel so blessed to have found it. Have a good day!
Jennifer

Christina, I also have congenital Aortic Stenosis
Thank you for the email!

 

[Ross]

Welcome aboard Jennsun

I just started Coumadin Therapy after my Heart Catheterization revealed a blood clot in my heart. I had surgery 7 years ago. The Doc did a Ross Procedure to replace my shredded Aortic Dissection and a root graft. I'm now facing Valve replacement as I'm at a Severe Regurgitation and it's causing heart enlargement and left ventricle enlargement.

The Coumadin or Warfarin is like taking anything else. I'm in my range of 2.0 to 3.0 3 weeks into the program. No side effects and as long as I watch what I eat and maintain a consistant diet, there are no problems.

Here is the fun part: I don't have a regular diet. I do not eat right at all. Everyone is different, but as long as you watch your intake of Vitamin K containing vegetables and the likes, you should be fine.

Check out Al's web site! You'll find a wealth of information there.
http://www.warfarinfo.com/