Not as bad as I thought

It struck me this morning that a year ago I had just had a bad AF episode (well, bad compared to the previous 7 years since diagnosis of paroxysmal AF) and was off work while my newly prescribed warfarin dosage was being sorted out. My tummy was soon a patchwork of huge dark bruises from the heparin (?) injections and I seemed to be at the anti-coag clinic every day. From something that was just a minor nuisance, my AF had become a big deal and I was starting to look at stuff like my employer's medical retirement policy and wondering if we could manage on my husband's income from a relatively new one-man business. My holiday cruise got cancelled as my GP was not happy to confirm me fit to travel until my anticoag regime was established.That was the time when I discovered this forum.

I'm posting this update as I hope it will encourage the many 'newbies' who join our ranks.

Despite my fears at the time, after 2 weeks my warfarin was pretty stable and I returned to work full time. I have changed to a slightly less pressured role, which helps, but apart from routine INR appointments (now at 70 day intervals) I have not needed to take time off work due to AF. I've had the odd minor illness, but even given the restrictions that warfarin has meant on over the counter medicines, I haven't been ill enough to take time off. I have been abroad again, albeit I chose somewhere I knew there would be English speaking medical staff and decent facilities. I cut out alcohol altogether for a while, but I have now learned that I can have an occasional glass of wine or a cider without ill-effects. There are times when I fantasise about having a huge Caesar salad or a whole juicy mango, but the dietary thing is manageable and I try not to get too uptight about it. I have had a tumble from my bike and the bruises didn't seem as bad as I thought they would. I know my AF won't go away, but thanks to this forum I feel much better informed about my options, so as and when I think I need more than medication, I know what to ask about. I do have 'low' days, but most of the time I just try to get on with life - not exceptional, not particularly exciting, but still very much worth it.

9 Replies

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  • Palady why can't you have a huge Caesar salad or a mango ? Ive been on warfarin for over 13 years and eat as much salad and mangoes as I wish . As long as you are reasonably consistent the dose can accommodate this by slight adjustment as necessary.

    I have a Coaguchek monitor to enable me to take my own readings and make minor adjustments to my warfsrin dose . I find this invaluable and would certainly recommend. I check every week.

    Sandra

  • Thanks Sandra. I am still in the learning stage and although 10 weekly INR tests are great from point of not being so frequent as to be a nuisance, it does mean that I don't have any idea of what INR is doing on a daily or weekly basis, so am cautious about experimenting with upping the salad intake. I've been on the same warfarin dosage since the first few days, so don't really know what difference small dosage adjustments would make. I agree a Coagucheck device would help with this, and it's something I might consider, especially as we are planning a 3 week trip to USA and Caribbean next year.

  • I have a coagucheck, and it's really liberating, and reassuring to be able to check ,e.g. what effect a particular food may have had. I thought I would not be able to afford one, but it was v.a.t. free, and bought over 24 months interest free.

  • I got mine free through my GP

  • To be honest I never looked at the diet restrictions and apart from cranberry and broccoli I eat what ever I want and my INR has been stable for a long time. I eat copious amounts of salad and love mangos , everyone is different I suppose .

    It's great you are able to live a normal life now so glad for you, I wish I could get to that level but each time I have an episode it flattens me and I end up in bed for at least 2 days and could not work as I am exhausted .

    Best wishes for continued success

  • Thanks Lainie. Ironically, today did not start well. My AF episodes are not so bad from heart rate point of view but they do mean I am back and forth to the loo (for 1s and 2s, if I can put it that way). Then I have to drink to replace the fluids, then back to the loo.....and the circle goes on. This was at about 4am. Had to sleep in a bit and missed a chance of a day out with husband. It seems to happen more often at weekends! I could understand it if I spent Friday night on the booze. Very frustrating.

  • If you want to try adding to or changing your diet you could either do it the week before your INR is due or just ring and ask for an extra one. We are very lucky ( husband also on warfarin) as our local surgery does INR tests with coaguchek and are very knowledgeable and accommodating. In four years however we have only had appts for both of us due the same day twice!!

  • The only things I like that I don't eat because of being on warfarin is cranberries and grapefruit. My INR nurse said, "Eat what you like as long as you're sensible. If you like cabbage eat it, but don't be stupid and start on a cabbage soup diet. If it's in your diet it's fine, Warfarin does not like sudden change when you eat lots of something that's not normally in your diet."

  • Rivaroxaban works for me and I don't have to worry about Vitamine K in my diet as long as I don't overdo it. I still eat green vegetables, salad and watercress without any worries. No blood tests which is great. I have taken this drug for over three months now. I started taking this drug three weeks before an ablation for Typical Atrial Flutter which started just over a year ago. Unfortunately, I have Paroxysmal Atrial Fibrillation now but have decided to have another ablation which unfortunately could take a year on the waiting list.

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