The FastDay Forum

[Moogie]

Hi all,

As usual my best intentions of being around here more have come to very little aside from keeping up with my messages and helping out with testing of stuff on the new mobile skin + site development. Argh!

Just as I thought I was starting to regain some kind of normality, being able to get away with just 90 mins of rest in the middle of the day and working for a good 6-7 hours a day, I've had a big old step backwards.

My consultant at the hospital took me off warfarin after being on it close to 6 months. They needed me off it to do some more blood tests just to confirm the cause of the clots, which was always said to be because of my birth control pill. They saw some unusual numbers on the tests they did on me in hospital, but said they couldn't depend on those due to my health at the time.

So, a few weeks ago I stopped taking the warfarin on Dr's orders. Yay! Salads, spinach, cranberries, liquorice... all the lovely things I've been missing out on or minimising were mine for the eating. I even thought I could start fasting again once my body adjusted to having 'normal' blood again.

Wrong!

I had my haematology appointment last week and follow up bloods. The haemo doc thinks the pill is a red herring in my case and is pretty sure I have a genetic deficiency in my Antithrombin III, one of our many blood clotting factors. He suspects this round of tests will confirm it and I'll be seeing him in about 6 weeks' time to find out for sure. He says that in any case I will likely need to be on anticoagulants for life as even if the tests come back clear (which he doubts) the severity of my clots and the unprovoked nature of them means I'm at high risk. Not only that but once the warfarin was out of my system I started to get symptoms again - unable to sleep, shortness of breath, higher heart rate, chest pains, palpitations etc. He put me straight back on warfarin last week and also said my consultant shouldn't have taken me off anticoagulation, yes I needed to be off the warfarin to get accurate test results, but I should have been put on heparin jabs meanwhile.

So, it looks like I've been clotting a bit again while off the warfarin, and I feel like I've taken a massive step backwards. I'm exhausted by 11.30am most days (but wanted to push myself to write this now before I go crash on the sofa) whereas I was making it to 1pm+ before. When I rest in the afternoon I sleep until 4pm, blotto. Moving about too much or talking for long makes me have to stop and breathe. It sucks, it's like when I came out of hospital but not quite as bad as before I went in. I don't know how long it'll take before I get back to what had become my 'normal'.

I think what bothers me the most is the waiting. I just want to know what the situation is and carry on with life, whatever that might be like from now on. I miss getting to my desk at 8am and working until 6pm. I miss being able to hoover. Wah wah, let's skip the sorry for myself crap I don't feel miserable or anything, I'm just frustrated. I want to be getting more done. I miss hanging out here. This is such a slow, slow recovery.

In good news, the doc thinks I'll be a candidate for one of the newer anticoagulants as they've struggled to get me stable on warfarin and to be honest I can't handle the dietary restrictions. I've regained a couple of stone and feel rubbish for it - and of course it doesn't help my health. So, in 7 weeks I hope to start rivaroxaban. There are pros and cons to all the meds, but I'd rather be able to eat my veg in whatever quantities I like on whatever days I like!

Meanwhile, today I have decided to try to fast. I can't keep putting on weight. I need to regain control. We're past birthday season for now, so the dinners out etc are done, cake making and eating the scraps, done. If I can't get through proper fast days without feeling unwell (I don't mean typical early fast problems, I mean chest pains etc) then I'll try 4:3 on 800 calories and aim to do 16:8 on the other days as much as possible. This is it, I'm dragging my mangled body back onto the wagon and dagnammit I don't want to be thrown off it again!

Right, tiny bit more work to push to do now and then I'll be out for the count.

Thanks again to everyone for their continued patience. So sorry I'm not here as much as I really want to be.

It reads like you have a lot to contend with and it's frustrating when you want to do so much that is confounded by this.

Good luck with the fasting: you've got a sound plan in place to cope with possible contingencies.

Oh Moogie, sorry for bothering you when you have so much on your plate! And sorry to hear about all your health issues - what a credit to you how well you seem to be dealing with it. Really hope you do get to try the new drug and it works for you.

I know you want to lose the weight you have gained, but please be careful not to over stress yourself. Take an easy process back to fasting.

Thinking of you and very best wishes.

Dont worry about being on warfarin for the rest of your life - you will work around it. Better to take the meds than to worry about clotting. I've been on warfarin for 20 years and its not stopped me yet !!

Great to hear from you, @Moogie but sorry to hear your ordeal is not yet done. Given how severe your case was, it was strange to hear you were coming off anticoagulation. Not surprised you may have a coagulation factor deficiency either. Hope you get sorted soon and back on the road to recovery. The new oral anticoagulants are much better for the reasons you listed. I took rivaroxaban for a garden-variety leg clot last year and it was great, no blood tests or dietary restrictions.

Good luck with the fasting however you are able to do it. It will make you feel better to be trying to regain some control over your life. But do take care of yourself too. Your recovery is just going to take as long as it takes
Thinking of you

[Debs]

So glad to hear from you but so sorry your recovery is going so slowly. I can't imagine how frustrated you must feel but at least you have a health plan in place.
Keep your pecker up and we are all thinking of you.

[carieoates]

It sounds like there's a wee light at the end of our tunnel Moogie. And being in drugs for the foreseeable at least you'll start to regain control over your clotting factors. Which is the most important thing here. Also the fact that you're wanting to fast in my opinion is a good sign. Good luck.

@moogie Well what can we say?
I can really feel your frustration and i'm so sorry you're still struggling but at least there seems to be light at the end if your tunnel, and maybe answers sometime soon
I'll keep my fingers crossed for you regarding
getting the new drug
Good luck returning to fasting take it slowly I know you will.
Don't worry at all about the forum were all here waiting and rooting for you for you to return when fully able to not before.
Take very good care of yourself, go slowly with the housework or better still delegate.

Hope the fur babies are all settling in for you and keeping you good company.

[janeg]

Good to hear from you. Hope things get settled. All the best
jx

Sorry to hear of your continued health problems and sending you loads of good wishes for a better time of things soon,

Gosh, Moogie, that's a tough row you're hoeing. I do so hope you can get back to "normal" as soon as possible. Sending you healing vibes.

Hope you feel better. You've got a lot of friends here.

Sincere wishes for better health and complete recovery Moogie

How frustrating for you. And annoying (though unsurprising) to have regained some weight.
I do hope the new drug sorts you out quickly, so that you get to whatever is going to be 'normal' as soon as possible, and that the 'normal' you reach will be better than when you were on warfarin.
All the best Moogie. Thinking of you.

Oh Moogie, what can we all say, what a bummer for you. I hope things start to settle soon for you. We are all behind you and wish you well, take care dear lady, and thanks for taking the time to update us all, much love and hugs on their way

Ballerina x