What prompted me to go on warfarin is that I had a round of atrial fibrillation at the general hospital and the doctor at that time took me in and left me on monitors for eight hours and then he said I had a virus. So I went home for about a year and got another one and I went to the Heart Institute. I was referred there by a resident. So I saw a doctor who put me on warfarin and I go to the clinic there now for INR monitoring every month. If something happens like stress or whatever and the INR goes off, I have to go back more often so I have had to go back twice in the last two weeks. To stay between the target of 2–3 is really hard. I like to stay at the low end of 2 actually because my complexion goes weird and I will get kind of bubbles in my face just from too much being at the surface so I try and keep my INR at 2 or 2.5. (Ontario).

I started having some weird feelings in my chest and a really fast heartbeat and I went to the emergency room a couple of times and they always just dismissed it because I was so young. Then I went back one time and the doctor actually gave me warfarin through an IV and that helped and then I went back and saw a cardiologist who did an electro-cardiogram (Ontario).

I had a fast heartbeat too and at first I went to the emergency room and they did the same thing. They told me it was panic attacks. I had to go home with the monitor for 24 hours to see how regular my heart was. Because it would come in a bout and it would be really bad and then it would go. They started figuring out what it could be and started me on the warfarin. So at least they figured out what it was (Ontario).

For me, I had been going through a little bit of a hard time. My grandmother was sick and I was taking care of her so they thought that it was a panic attack when I went in. So I let it go for another two or three months and then I found out I was pregnant and it just kept happening so I went back and they did scans and ended up crossing other things out and came to a conclusion. So I couldn’t start warfarin because I was pregnant so we were trying to find other medicines that were safe and then the second trimester, they put me on it. They thought that the health risks that I was going through would be better if I was on the warfarin (Ontario).

They gave it to me because my heart was going crazy. I was born with a heart defect of a hole in my heart. They sewed it up when I was a kid and they thought that I would be fine. I was fine and then about four years ago, I was walking and my heart just started racing and I went to the emergency room and they said that I was just having a panic attack. So they kept dismissing it and finally I told my doctor to get me a specialist… So I went to Toronto and I saw the cardiologist and he took one look at me and sent me to get a pacemaker. So I got that and then I went on warfarin because occasionally my heart still goes wonky. I don’t take as much as I used to now because I have the pacemaker which kicks in and helps a lot. They are weaning me off of it slowly (Ontario).

I had a stroke. I was in the hospital. I couldn’t talk or write for 18 days. It was like being trapped in my own body. I couldn’t communicate. The decision to start was made in the hospital. I was seeing a specialist. Basically, my blood pressure was too high. They wanted to control my heart (Alberta).

I would rather not take it. I would rather be healthy — it would be nice not to have to take it (Ontario).

Aside from the fact that it’s rat poison, it works. It’s hard to get over that sometimes. It does drift through your mind (Ontario).

When I was reading up on it, they said it’s used in grass killing stuff too, I was thinking oh my god! I’m taking something that is going to kill me! (Ontario).

You do wonder, if it kills rats, they are pretty sturdy creatures (Ontario).

I wouldn’t dare not take it (Ontario).

I know that if I don’t take it, something could happen and I could keel over on the floor so I know that I don’t have a choice. Either I take it or I croak (Ontario).

Basically, they figured from birth I had a heart defect that made me predisposed to having strokes. They explained numerous things at the time, but I couldn’t communicate back to them. I got put on this medication to control my condition and it turned out great. I have no complications. I’m 95% back in terms of communication skills (Alberta).

If I am late taking it, especially lately, I have noticed that my heart starts racing. Your heart starts galloping and that’s when you really have to sit and get normalized. Lately what I have been doing is just sitting down, taking an hour all by myself and really breathe. It’s still dangerous, I recognize that. My INRs are ok but I think I am actually getting worse (Ontario).

It’s not convenient but it’s part of life. For me, it’s kind of hard to answer the question because I’m used to it now. At the beginning, I wasn’t happy but at the same time, I was happy because they knew what was wrong so I was getting help. Now it’s just like a routine — you take your pills and go where you have to go. You just know how you feel and communicate with the doctor (Ontario).

For me, I found that it was hard sometimes having to constantly go back and forth to Toronto but it’s well managed now (Ontario).

It works for me (Alberta).

I want to do things with my kids who are teenagers now but sometimes you are just worried about yourself. I really worry that I can’t keep up with them and be as much fun as you want to be. Like we are going to volunteer at Country Hoedown and I’m wondering if I can stand up for five hours and take care of kids (Ontario).

When I got my warfarin, it dramatically improved my energy level (Ontario).

I would recommend it because I remember what it was like to be not on it. You always want to help someone else that you care about so you know that if they are going through the same thing, you always want to suggest something (Ontario).

I would recommend it because a lot of people that have the same condition are on Aspirin or baby Aspirin and people have actually passed out or their heart has stopped briefly. I know someone on baby Aspirin that should be on warfarin (Ontario).

It depends on how serious it is. If it was identical to me, then I would recommend it but if it is a little different, then I would tell them to talk their doctor. I would say yes if the question was identical to me but I would tell them to make sure they know that they get monitored properly and communicate with your doctor (Ontario).

I would because it’s worked for me. I haven’t had an issue with it at all (Alberta).

I find it makes me tired. It wears me out after a while. After I take it, I’m just exhausted. I take 10 mgs a day (Ontario).

I’m not taking that much but I find that when I do take it, I will be on the computer and I know I have things to do but I just can’t find the energy (Ontario).

It’s worse when you have a kid because that is 24/7. You can’t take an hour out (Ontario).

You are tired and you want something like a coffee to pick you up but you are scared and you don’t want to counteract it (Ontario).

I find if I eat certain things, like if it has a lot of sugar in it or a high acid level like orange juice, I start shaking. This happens with fast foods too (Ontario).

My doctor told me not to drink a lot of cranberry juice or eat cranberries and other acidic fruits (Ontario).

The disadvantages are just going in and getting tested. It’s a pain in the butt. I put it off sometimes. The wait at the clinic is incredibly long. I’ve waited up to two hours. That throws off your whole day. I found if I go late in the day it’s a little bit quieter and they’re more inclined to get you done (Alberta).

The past couple of weeks, it has changed a lot but other than that, it was stable (Ontario).

They are lowering mine because the pacemaker is helping so they are slowly weaning me off of it. I will be on it forever but they are taking my dose down a lot (Ontario).

Mine is very stable. We found a dose that is good and I am responding to it so I am happier than I was before (Ontario).

During the pregnancy and after, there was a bit of fluctuation but the last six months have been good (Ontario).

Probably about three times a year and in that year span it’ll change up or down. It’s not a huge amount, but it does happen from time to time. Usually, I have a step up or down and then the next time it’s back to normal. After they change the dose, I have to be retested a week or 10 days later (Alberta).

I have a specialist here in Ottawa now which just switched over about a week and a half ago but before that, I was still with Toronto. Every three to three and a half weeks, I would go down and do blood work and see my heart specialist. I just got transferred back. The reason why I had to go to Toronto was because they kept saying well you are so young and even though I had previous heart problems, they would just say oh you are fixed, you’re fine. And when your heart is beating out of your chest and you can’t breathe, you are not “fine.” So my doctor finally had enough. Thankfully I have a really good family physician who transferred me to Toronto to get the help. I went to Toronto Women’s Sunnybrook Hospital and they were great there. It has been my specialist who has been adjusting my dose — my family doctor doesn’t deal with that (Ontario).

During my pregnancy, it was done at the general hospital with those doctors that were on there and there was a specialist there as well. But that was mostly just through my pregnancy and delivery. A couple of months after, my family doctor then took on my case again and said that my INRs were great and my blood work was good. She is on top of it. I usually go every two to three weeks to a lab and my family doctor adjusts the medication (Ontario).

My family doctor is the one who monitors it but she sends me once in a while to see the specialist. She gives me the requisition and I go to a private lab and she calls me after if there is anything I need to know. It has been pretty level so the dose I have been taking is pretty good. Before, I would get the racing and I would have to lay down and breathe. I get tested about once a month when it is pretty level. We have talked about going in more when it fluctuates (Ontario).

I also go to my family doctor and I go every two months to see my specialist at the hospital. At the beginning, it was pretty level but now some months it’s higher and some months it’s lower so I have been going more to see how it’s doing. Once they see that it’s too high or it’s too low, they change my medication and have me come back in a week or two (Ontario).

I go in and get my testing done. Then the doctor calls me back within a couple days. I’ll have a message on my machine telling me to stay at this level or change. Like stay on the nine mg or change to eight mg and we’ll retest in 10 days. I don’t have to go back to see the doctor. My family doctor dictates how much has to be changed: higher or lower (Alberta).

The anticoagulation clinic at the [name of hospital] is pretty good. I usually go about once a month but I have been twice in the last two weeks because the level was low — it was around 1.4 because I had gotten a prescription for a respiratory infection and it thins your blood. The medication made me really sick so I had to go off of warfarin completely for three days (Ontario).

For me when I take medication, I like to know everything. And sometimes when you ask questions of doctors, their answers are different from other doctors or things that you can read up online on the medications. They put me on it and then I wasn’t sure if I was going to stay on it so they wanted to make sure that I really knew this drug and what it was going to do to me and how I would have to change my life around. My doctor is good at answering questions but you can’t always get everything that you want out of the doctor. They just want to assure you that it’s safe and nothing is going to happen but you know there are other risks. I knew that the benefit was greater than the risk. I read a lot online and that was the extent of my research but I read case studies and forums, etc (Ontario).

My doctor explained it to me and I was kind of worried and did some research online and was even more worried but she told me that I had a choice of whether I wanted to go forward and it was most likely to help me. I was feeling terrible at the time and I always had to sleep on one side and the fear of not knowing was awful. Especially when I was in the ambulance a couple of times and they put the monitor on me and you hear them talking and saying they don’t know why your heart is beating so fast. After I did get all of my questions answered, I just had to make the choice about whether or not to be scared. Any drug you take has a long list of side effects and risks. I did some reading online but people usually go online to complain so you read the bad experiences (Ontario).

In my case, what they did for me was they actually have little patient groups for certain things and we all got together with a practical nurse who sat down with us and gave us all of the information. She gave us about an hour of education on the drug and how it works and lots of handouts. Then they had a weekly follow up for about six weeks. You could come once a week and mention any problems if you had any. They had a group for all different ailments. It is a long waiting list. From the time I was first diagnosed, it took me about 9 to 10 weeks to get into the weekly groups but I got the first part right away. I found that really helped me to have that little bit of support (Ontario).

Probably in the initial information session they did, but I can’t remember it. Initially, the wife was taking care of all my meds because they weren’t sure if I was “there” because I couldn’t communicate (Alberta).

Well the [name of hospital] doctor was very busy. I asked the nurse at the anticoagulation clinic twice before she sat down with me and gave me the full story and she was a remarkable nurse. She was just called away to do more important work. They are busy but sometimes they think that less information is more as long as you keep taking it out because they don’t want to freak you out (Ontario).

We have been on it long enough that we know the ups and downs and how it affects us. As first you don’t so you are more closely monitored (Ontario).

I think there is more that you can always know about something and it would be nice to not to have to take it but it is beneficial to me and I kind of got upset about how you want to do more things with your children and you can’t and it’s hard because I’m so young and I wish that wasn’t the case. But I try and fight it and warfarin does work for me and keeps me on a steady level where I can enjoy my life more (Ontario).

Yes, to make sure that my levels are not too high or not too low (Ontario).

When the blood is thinner, it is easier on your heart and puts less stress on your body. If the levels are too low though, it is harder on your heart (Ontario).

My doctor told me that we don’t want your levels too high or too low and be at risk for those complications. Once you get the hang of it, it levels out (Ontario).

My doctor told me to watch on the weeks the levels are too high, to watch for blood in my urine or if I get a small cut and it won’t stop bleeding. Just to watch for that stuff and make sure that I’m monitoring myself and nothing bad happens to me on the weeks that my levels are too high (Ontario).

I know that my doctor just wants to make sure that the levels are OK and that the medication is in my system and it’s working because she says there is no point in giving medication if it’s not going to work or it’s not in your system (Ontario).

Basically, they want to check my level of my warfarin. They want to make sure it’s not too high or too low. If it’s too high, I don’t talk well. I have to be very careful. I’m a mechanic and a diabetic. If I cut myself all of a sudden, it’s not clotting well. Sometimes I can’t stop the bleeding. Maybe, if I’ve changed my diet and it’s affected it, I’ll go in and get tested because it’s time anyway. I can’t remember if my dosages were ever too low. I started at 12 and so I’m down to 8 (Alberta).

Give it to me now! (Ontario).

I think that no blood tests would be good but I like the fact that there are less eating restrictions. If they gave you the same outcome of what warfarin does with less other restrictions then definitely (Ontario).

I would ask why (Ontario).

Yeah, I would be nervous too. I like to know (Ontario).

I like to be monitored and know what is going on (Ontario).

I’d be interested, but is it going to work as well for me? How often is it going to be checked? I’m wondering if anyone will be monitoring this for me. I’m used to testing and that for me is comfort. If I was a drinker I might be more interested, but because I’m not I don’t care. I like to be tested rather than not. It goes back to comfort (Alberta).

I want to know why they are not monitoring me, what is in this drug that causes no need to be monitored, what is the difference between this and warfarin. It is a whole different drug so I would want to know my research and know why (Ontario).

I would want to compare the facts between warfarin and this other drug. If I don’t need the blood tests and there is no dietary restrictions, then it is a different drug so how is that going to help me? It’s not the same as warfarin so where is the magical ingredient in this new pill. I would want a comparison because I’m very cautious with new drugs I’m taking (Ontario).

I would feel insecure and I would want some testing done to make sure your blood is OK. We have had our blood tested forever and we feel safe knowing (Ontario).

I would rather have my blood tested for a couple of months on the new one until it is proven that there is no change at all and then I would feel better about it. But I wouldn’t like to do that without knowing because with warfarin, it is closely monitored and it makes me feel more secure. It’s your heart — you don’t want to play around with it (Ontario).

For me, having my blood drawn is a safety net — I know whether it’s high or low and I know if it’s working (Ontario).

I have heard about that. The machine costs $5,000 so it’s expensive but if you want to travel, in the past there was no way to get your blood tested. I would get it (Ontario).

The doctor is putting a lot of their faith and trust onto you so it’s kind of like they are putting their job onto you. So if you make a mistake, you are not the expert. You would kind of be afraid to do that yourself because you have all of these experts doing it and now you are doing it (Ontario).

Machines don’t always work all the time. That would be a concern there (Ontario).

I think it would be good as long as it’s a cooperative thing where the doctor is working with you. If you are a little low, rather than adjusting the medication yourself, which for me, I would never do because that would just be plain dangerous, I would like to have an option where I could call my doctor and let them know what the home test did and ask what they recommend. Doing it on my own, I would be very scared. If I suggested wrong, it would land me in emergency or worse (Ontario).

I wouldn’t want to do it on my own. I like to see the doctors and talk to them. Even small things you say, for you it’s small and to them they know. Even if it was something where you could call up your doctor or if it was online and you submit and they tell you but I prefer to talk to my doctor. As long as there was somebody handy to help me monitor, I would maybe like it a bit. But I would rather leave it in the hands of the professional (Ontario).

A lot of medical companies probably wouldn’t cover it. I know for me, my pacemaker was hard to get covered so I can only imagine. It is coming out of your pocket (Ontario).

I would be ok as long as they were adjusting the medication (Ontario).

I would be about 80% sure. I would always prefer the top hand come from the doctor to make the judgement call. If the pharmacist makes the judgment call, that’s ok but he hasn’t had as much experience as the doctor so I would just prefer the doctor be doing it (Ontario).

If the pharmacists seem like they care, then I would be more trusting. Doctors are busy so it is hard for them to be as open and concerned as a pharmacist. I need that trust. If I had trust in what they are telling me, I would be more open to monitoring it but I do like to talk to the doctor (Ontario).

I find they change the nurses often because the really good nurses go off to higher jobs. We have had nurses with poor language skills and I had less faith in them. The nurses are varied in care. You need to feel that they care and are committed to what they are doing and not just a job they are rotating through on the way to something else (Ontario).

I actually changed pharmacists for that reason because I had a pharmacist that wouldn’t explain anything to me and just gave me my medication. Like you, I was taking cold medicine just over the counter and asked the pharmacist, mentioned what I was on, she never said anything and I took it and two days later I was in my doctor’s office with a 105 degree temperature. From that point forward, I was very cautious with pharmacists. If you don’t have the trust in them, it’s a battle. There is nothing worse than having to battle for your health care (Ontario).