New To Wafarin

Updated

hi im 28 yrs old and im having a valve replacement and will be on warfarin .im feeling a bit overwhelmed with everything i have to do feeling a bit worried i wont cope with the change .
how hard is it when u start taking warafrin between dra app every week and learning to control the levels i hve two small children that keep me busy i dont wanna forget to take it or have something im not allowed does anyone have a great routine/system they use to help them daily ?
thanks in advance

11 Replies

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1

Hi Kristy,

I actually went through the same thing last year at 26. I felt very similar emotions to what you describe but now further down the line and on the road to recovery.

I also created a iphone app to help patients prescribed warfarin that helps with dosage reminders and appointments thats available in the App Store or here oatbook.co.uk

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2

What I'd recommend, in addition to a medication/dosage reminder app as was already suggested, is that you also get a good comprehensive nutrition app.

I'm not sure what type of cell phone you have, but there are some very good ones available for most platforms and that way, you can see if any certain foods have any nutrients you should avoid, such as Vitamin K.

Learn more Warfarin details here.

For the record the app mentioned is only for the iphone and I cannot open the page, so I don't know if it is free or not.

Does anyone else have any advice or suggestions to add?

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3

Hi Kristy, I had valve replacement just a few years ago and I am on warfarin, recovery from the surgery takes time and does getting used to the warfarin, I go to a clinic to keep monitored with my dose, you will be given a list of foods you should avoid, or limit your intake of, everything you eat can and will interact with this medicine, as will any otc medicines, it all falls into place eventually but takes time to take it all in. I would love to talk with you more if would like, I was 39 when I had my surgery. If you need someone to talk to just let me know and I will give you my email address. Carla

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4

Thanks so much i have recently changed my warfarin from having it in the afternoon to taking it in the morning and i find im feeling less side effects .
They just sent me an inr testing unit its all abit daunting i still havent read the instructions and used it yet i just cant bring my self to pin pricking my own finger :( would love to keep in touch
Kristy xx

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5

Kristy, my email is xxxxx@xxx {edited for privacy} would love to chat with you about all of this. I have tried other sites and haven't found one to talk with people who are going through the same thing as I am.

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6

Hi Kristy,
I too had my aortic valve replaced at age 28 with 2 small children. My daughter was 5 weeks old. She is now 25. I have been on Coumadin 25 years with relatively few problems. I am very active at 54 years old, work full time and continue to monitor my INR very closely. I eat green vegetables in moderation because they are part of a balanced diet for good health. I think the key to success with taking blood thinners is to stay in tune with your body and ALWAYS monitor your INR. If I notice more bruises than normal on my arms or legs (unexplained), then I check my level. After being on Coumadin, warfarin for awhile, you will learn to recognize these things also. Hope it is getting better! I keep my meds in a daily pill pak in the same spot so it has become a part of my daily routine to take them. However, I still after 25 years, occasionally forget . I just take it when I remember. Good luck to you!
I also had another baby with my new valve- he is 23 now

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7

Kristy, I did get a pill case to help me keep up with my doses and what day it is, the clinic I go to for warfarin testing was a little pushy at first for me to take it at 6 pm. I stressed over remembering that time each day and having it with me if I wasn't home, I finally asked my dr. about it and he said I could take it in the morning so now I have my pill case by my bed with a drink and I take it first thing so that can be off of my mind for the day. Trying to maintain eating the right amount of vitamin K or not to is also stressful as I am not one to eat the same things every day or week for that matter but I am doing ok finally and not stressing over it any more, if my numbers change then my warfarin dose changes....oh well, I have decided that the medicine will have to work around me, not vice versa. wishing you the very best and most important, don't stress, take deep breaths and only do what you can, don't push yourself too soon! Hugs!

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8

i have been on warfarin blood thinner for 10 years. the only thing i have to worry about is cutting myself. the slighest cut is hard to stop the bleeding. i had to go to hospital twice to have help stop the bleeding. once i bit my tongue and the other time was when i used a cotton swap in my ear and it must had nicked the ear canal. women have to worry about their periods i have been told. watch out for any sharpe objects. thanks boo

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9

yes my periods are that bloody heavy i cant leave the house :( they never used to be bad at all they last longer too. makes me so exhausted doesn't matter what i use i seem to still have accidents i have seen my doctor we are going to get the murina (sp)? contraceptive apparently it's good for wafarin patients and it may help slow it down fingers crossed.......

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10

Hi, I had a double heart valve replacement in 1999 and have been on warfarin ever since. I had relatively few side effects all the time. Until April this year. I started bleeding profusely during my period. I ended in ER. An embolization was performed - the main arteries feeding the uterus was blocked during a procedure similar to an angiogram. This stopped the bleeding mostly. I had to get 4 units of blood transfused. Then home and a week later I had to have a hysterectomy. The worst thing that ever happened to me. Not even heart surgery was as bad. The day after the hysterectomy I had an emergency operation as I had internal bleeding. The gynea did not put in a drain in before closing up after the hysterectomy. In my eyes this was so negligent as she knows about my warfarin therapy and had me on clexane a week before the hysterectomy. I took long to recover and yet required another 4 or 5 units of blood to be transfused. Eventually I started running again short distances almost daily towards the end June. In July I had a stroke. The neurologist and cardiologist both said this is what surgery can cause. The neurologist prescribed ecotrin in addition to the warfarin as he felt that warfarin alone was not enough to protect my heart valves any longer. I have terrible side effects from the ecotrin. Constant headache, stomach ache at times, dizziness at times, initially I suddenly lost weight and now I am picking up weight very fast, my eyes are swollen all the time due to water retention, I do not urinate as often as I used to and I feel tired constantly. I used to run approx. 48 kilometers a week before the hysterectomy. I am now seriously depressed and too tired to start running again. I feel fat and ugly and miserable. I need to ask my neurologist if ecotrin can be replaced with something else.

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11

I am taking 12.5 mg of warfarin. It doesn't help my inr it is at 1.4.after at least 3 months. I am coughing up some blood. A little scared please help.

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