So scared - lost my Dad and Brother to heart failure - now I’m under investigation.

[Brummiegal]

Hello everyone ,

Over the last 2 years I have jumped in with my four penny worth to reassure or comfort someone new to the AF roller coaster - but now it’s my turn in the hot seat Again.

I’ve been steadily gaining weight since I first started taking Apixaban in conjunction with a beta blocker and BP med . I have complained about being unable to control my weight since my fist 6 month check up and blood tests on the drug - plus hair loss. - but have been continuously told these weren’t listed as side effects of Apixaban.

This last 3 weeks I have noticed my weight increase more so and suffered with swollen ankles and cramps plus a lot of aches and pains - with the Pandemic in full flow I kept away from the Drs surgery.

Yesterday I was contacted by surgery to say I was overdue blood tests and that I could now come in on an appointment to have my bloods taken - I’ve an appt next Wed - I asked if whilst they were on the phone I could request a telephone consultation with a Dr regarding my Apixaban med.

Dr rang me back this morning and we discussed the symptoms that were worrying me regarding the blood thinner - I listed all of my symptoms Weight gain, swollen ankles and feet, cramps and over the last week the occasional shortness of breath and a wheeze - thst I had not suffered with before - he immediately said he wanted a full blood count done and relative blood tests so I told him about my appt next week, I asked him what he thought it might be as he disregarded any side effects to medication I was currently taken - and he said he was afraid that my symptoms pointed to Heart Failure - I couldn’t speak I was so shocked and just managed to thank him and say goodbye.

I have been a right wimp all day since his call - crying bitterly one minute, checking to see if my Insurance is in order the next - anxious and in full panic mode all evening.

With my family history I feel the Beast I’ve dreaded all my adult life now has me cornered and I’m so very scared folks - I’ve battled with my weight, followed an exercise regime and watched my diet - made sure I hydrated sufficiently - took my vitamin supplements - havnt drunk alcohol or smoked for 12 years now - but it’s still found me - I really am so very scared.

[Buffafly]

Hi, I would say don’t panic, heart failure is not what it sounds, but as you have lost family members to it that won’t be reassuring. I lost my father to acute heart failure but he had emphysema and uncontrolled AF so not surprising. The good thing is that your GP has leapt into action and has listened carefully to your symptoms and is ordering tests so not jumping to conclusions either. I take Apixaban and have similar symptoms sometimes, coming and going, but I know they are from years of PAF combined with my other medication and a too sedentary lifestyle because of mild disabilities - that’s my excuse anyway! Last year I went to see a GP - not my usual - with symptoms of swollen legs and sudden weight gain as well as a few dizzy spells and was told it was the hot weather and that my sinus node was wearing out so I should put my feet up when sitting. A few weeks later after my GP came back from holiday I received a call to have a blood test! So you are lucky to have what seems like a caring and competent GP who will hopefully be able to help you. I understand how distraught you feel especially under the circumstances but please don’t despair, I’m sure your great efforts to lead a healthy lifestyle must have given you the best chance of coping well. Can I suggest you visit the BHF website where there is excellent information, stories of real life people living with heart failure (which I must remind you hasn’t definitely been diagnosed yet) and a nurse helpline as well.

I wish you all the best, please tell us how you get on 💜

[Brummiegal in reply to Buffafly]

Thank you Buffafly your response means a lot - I panicked last night, so glad I had this site to turn to - knowing I’m not alone in this really helps me to calm down.

With the Pandemic we are all under a lot of stress - I miss my Son and hate being alone so much of the time, but I live by the Sea and have a bit of garden to get out in to, I’m not in pain so I need to take a good long look at myself and be grateful for what I have and where I am.

As you say my GP is on the ball so I just need to be patient and get things done - thank you for the reality check and support- catch you again soon with an update - take care of yourself and be safe😊

[WhitstableWanderer]

First thing is don't panic. Heart failure is such a brutal term but it really means your heart isn't running as efficiently as they'd like. Been there, been scared, as many on here will have been. But you've been diagnosed and consequently will now be tested, monitored and treated to improve matters. Best wishes.

[Brummiegal in reply to WhitstableWanderer]

Thank you so much for your response, I really appreciate it. It’s the terminology Heart Failure - and the connotations that got to me and I went into blind panic mode.

Like thousands of others I’m running scared of the Covid19 virus - desperately missing my Son and starting to go stir crazy😜 - that phone call from the Dr was the last thing I needed.

I need to be patient and take it as it comes, I will keep in touch - your kindness means a lot so thank you again- stay well and safe.😊

Barb x

[irene75359]

I am so sorry you lost your Dad and brother to heart failure. And no wonder you are panicking now your doctor has alerted you that you may have it too. I agree with Buffafly, your doctor sounds on the ball and it can't have been easy for you to hear what he wants to investigate. Heart failure is such an emotive and frightening label and the fact is that IF you have it (just a possibility don't forget) many many people lead long and active lives with the right medication and life style changes. You have taken all the right steps to help yourself in your health with weight loss and exercise, when you feel a bit better, please carry on.

Will be thinking of you, I will be waiting to hear how you get on. And don't forget you are not alone, if it all gets a bit much, there is always someone here. x

[Brummiegal in reply to irene75359]

How kind you are, thank you so much for reaching out to me - it means so much.

I suppose it was the final straw getting that call from the Dr - with the Pandemic and Covid 19 hanging over us all, desperately missing my Son and worrying about his safety it all just seemed to much to take in.

I have read all the lovely posts from the wonderful people on here and they have left me feeling a lot more positive - one day at a time and try to stay positive is the order of the day 😊.

Thank you again - I will keep in touch, look after yourself and stay safe - speak again soon.

Barb

[CDreamer]

I am sure the sure the shock of hearing that has brought back bad memories but bad memories are no predictor of future events. Hear Failure is not always the beast you imagine it to be and I would echo all of the above excellent responses. Sometimes the only thing to fear is the fear itself - a bit of cliche - but true all the same.

18 months ago my husband was in persistent AF and going into HF with all of the symptoms you describe, plus aortic stenosis. After full investigations and a treatment that suited him, his heart is now working much more efficiently and his energies returned and he is enjoying life at 86.

It’s really easy to blame medication for all of our symptoms and you are not alone in hating having to take medication but often we forget the important part these medications play in prolonging our lives and improving our quality of life.

I would imagine that some of your weight gain may be because of fluid retention, which will be why diet alone is unable to control your weight.

You are doing all the right things regarding lifestyle but maybe now you need a little more help and sounds as though your GP has this covered.

Very best wishes and do keep posting and let us know how you go. CD.

[Brummiegal in reply to CDreamer]

Thank you CDreamer, your response means so much - with everything else that’s going on around us - desperately missing my Son and feeling alone in it all getting that call felt like the last straw - you are quite right all the heartache of losing Dad and my Brother to Heart Failure came flooding back and I was overcome by it all I’m afraid.

I have taken a lot of comfort from the words spoken to me from the posts and I will take the advice given and take it as it comes - I don’t feel so alone any more, I know you are all here and know how I feel and it is giving me a great deal of comfort - Thank you again, I will keep in touch - take care and stay safe😊

Barb..

[jeanjeannie50]

Listen to this talk from a cardiologist regarding heart failure:

youtube.com/watch?v=JRujYGC...(Not working as expected?)

[Polski]

When you have followed up all of the above suggestions, you may be interested in reading 'Metabolic Cardiology - The Sinatra Solution' by Stephen T Sinatra.

[CDreamer in reply to Polski]

Love him!

[angell1950]

Hi- as I read your blog it was as though I was reading an account of myself. I have tried and tried to shift this weight. From first being told I had PAF after experiencing a TIA in 2015 I have gained four stone. The medical profession don’t seem to want to help and really have left me to it. I think it’s the medication but my GP doesn’t except it. But with massive weight gain, hair loss and everything else to boot. I am totally fed up, especially in this lockdown. Aghhhhh 😡

[Auriculaire in reply to angell1950]

Have you had your thyroid checked out? Hypothyroidism can cause both weight gain and hair loss. Often acompanied by constipation and feeling cold all the time. I remember someone posting here that beta blockers stop the conversion of T4 to T3 . Weight gain is not on the official list of side effects for Apixaban but I have read posts from several people complaining about this. I have put on more weight since starting Apixaban more than a year ago. But I am also less active as hip arthritis is restricting my mobility.

[gwyn53]

I woukd say.

Wait until you speak face to face with your Dr.

Have your tests and he/ she and yourself can takeit from there.

Easy for me to say.

Im a wimp all the time.

But im sure the dr can help, put your mind at rest and you will be treated with kindness and respect.

Dont say you are a wimp.

Coz you are not.

Its great you let us know.

We will be there whenyou want to chat.

Let us know what he says.

Feel good relax if you can and you will be ok.

Gwyn

[Brummiegal in reply to gwyn53]

Ahhhh Gwyn thank you for your kindness and consideration, it means a lot to me - with the Pandemic still raging - missing my Son - and going stir crazy I can’t get my head straight, I really can’t - so when I heard from the Dr that he wants a full Blood count done, and remembering the being passed from pillar to post before I had my AF diagnosis I’m afraid I went into full panic mode - but in the midst of my panic and anxiety I remembered this group and the caring people here who helped, advised and supported me through that first awful 12 months. I’m so glad I did.

Thank you again for reaching out to me I really do appreciate it, and I will keep in contact. I feel a lot calmer today, now I know I’m not alone in this. 😊x

[Ruza2020]

Hi Brummiegal. Sorry to hear about your current health-scare. I can totally empathise with your fear and worry...

As for your weight gain, I doubt it is caused by Apixaban. I have been on it for about eight months and my next door neighbour for the past seven years. None of us have gained any additional weight.

However, you may look into your other medication - especially beta blocker. They may be your weight culprit. Check the link below. It says that: "If you're taking a beta blocker for heart failure, tell your doctor immediately if you suddenly begin to gain more than 2 to 3 pounds (about 1 to 1.4 kilograms) in a day or 5 pounds (about 2.3 kilograms) in a week. This sudden weight gain may mean that fluid is building up in your legs, abdomen or chest, which may signal that your heart failure is worsening. Your doctor can help distinguish weight gain from the buildup of fluid that may occur in heart failure..."

mayoclinic.org/diseases-con...

Wishing you well.

[Ianc2]

Well done Brummiegal. You have started on a quest to confront your ailments and problems. "I will take a good long hard look at myself". Good to hear. More power to your elbow.