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It's over 5 years since I joined the forum!

Paulbounce profile image
37 Replies

Hi HUC (HealthUnlocked Community).

I just checked my profile and I joined over 5 years ago! This means I have been in Afib longer than I thought. Knowing what I do now about the condition, I most likely had Afib for two years before it was detected = a total of 7 years!

For all the newbies out there, it's had its ups and downs, but it's not a fraction as bad as I thought it would be when I was first told. Life goes on pretty much as normal (for me - we are all different of course).

I won't let it beat me. Mindset is the keyword here - there are far worse illnesses to have. So to all you newbies out there....

🎸keep rocking - you got this.

Paul

PS. I'm not really 138 years old as stated in my profile🤣🤣🤣

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Paulbounce
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37 Replies
Cavalierrubie profile image
Cavalierrubie

Thank you for your good wishes Paul. It’s good to have a cheery post and to be reminded that things could be worse. I thought my life was over when l was first diagnosed, but l couldn’t have been more wrong. Sometimes it’s hard, but we win the battle if not the war. You are a bright little star ⭐️ Keep shining.

Paulbounce profile image
Paulbounce in reply toCavalierrubie

Thanks Cavalierrubie. Have a lovely Sunday and keep shinning too 🌞

Paul

Buzby62 profile image
Buzby62

Great positive post, you’ve definitely struck a chord there 🎸

WRT your age on profile, it’s not visible to the rest of us unless you tick the box to share your date of birth. Most choose not to tick this to keep DOB private but it only actually shares your age to the month on profile and not the DOB.

Best wishes

Correction, you have to Untick the Hide button next to DOB

Paulbounce profile image
Paulbounce in reply toBuzby62

Hi Buzby.

Done! I have unticked the box.

Have a great day ;-)

Paul

Cavalierrubie profile image
Cavalierrubie in reply toBuzby62

Some of us don’t like to advertise how old and decrepit we really are. 😂😂😂😂. Like Joan Collins, l am staying at 21.

Paulbounce profile image
Paulbounce in reply toCavalierrubie

I've been 21 for years Cavierrubie! I knock off a year for each B'day. I'll be 3 soon nearly 6 (ever seen Tiny Tim's videos - have a look on YouTube. I promise he will give you a really good laugh. Well worth a look).

Paul

Cavalierrubie profile image
Cavalierrubie in reply toPaulbounce

Yes, 😂😂😂 no point in getting old! I will go on You Tube and check it out. Sounds fun. Take care Paul 😂😂😂

Paulbounce profile image
Paulbounce in reply toCavalierrubie

OK, Cavalierruble. He is really funny and has a cult following ;-)

Paul

Frances123 profile image
Frances123 in reply toPaulbounce

And how is your uncle Barry? 🤣

Paulbounce profile image
Paulbounce in reply toFrances123

Hi Frances. Uncle Barry is here now with Smackhead Steve 🤣🤣🤣

Paul ;-)

Budken profile image
Budken

Do you mean you have had Afib, or are IN Afib. There is a difference!

Paulbounce profile image
Paulbounce in reply toBudken

Hi Budken.

I am in Afib as I type and have been for years on and off - sadly it never really goes away. My best result was two years in sinus after a CV. Ablation works for some but often needs a top-up. The Wolf Mini Maze seems to be the best treatment option and is often said to be the gold standard for an Afib cure. Have a look in the search box (top left) but at an all-in cost of about $37,000, it's not cheap!

Paul

PS. I'll tag @saulger If he reads the thread I'm sure he'll tell you about his experience after having a Wolf Mini Maze.

Edit. The tag didn't link. Try...

healthunlocked.com/afassoci...

Budken profile image
Budken in reply toPaulbounce

I take Flecainide, it has kept my Afib in check for twelve years. I see no reason to have any kind of procedure, at least for now, and probably in the long run as well.

Paulbounce profile image
Paulbounce in reply toBudken

Sure Budken - I agree. Flex (IMO) can be one of the most effective med for keeping Afib at bay for some people. It helped to maintain sinus for two years in my case. However, I made the deadly mistake of taking things into my own hands and taking extra (half a pill) a few times a week. This (with hindsite) was a very bad move and put me into flutter. I should have listened to my cardio and kept to 200 mg's a day. I have learnt my lession and only take the recommended dose of my meds according to what my medic tells me. These things aren't sweets and it's very important to follow a doctors instruction to the letter.

Great news it has kept your Afib in check for 12 years.

Paul

Pommerania78 profile image
Pommerania78 in reply toBudken

Has the Flecainide TOTALLY kept the Afib away for these twelve years? Thanks.

Budken profile image
Budken in reply toPommerania78

It's a long story. My Cardiologist in Florida started me on 50mg twice daily, along with 25mg Metoprolol. It worked for about six years, when I started having episodes ( only a few, and they only lasted about four hours each time. He suggested I double the dose, and I did that for the the next year. I then moved to the Mountains of North Carolina in 2016 where I saw a new cardiologist, with years behind him in the field. I was having outbreaks again, but this time he said, " I don't think it's the Flec not working, I think it's because you are taking it with Metoprolol. He said it often causes erratic heartbeats. So I stopped the Metroprolol which was a real rollercoaster ride. I thought I was going to die. However after a week the ectopics stopped entirely, even my PVC's which I had since I was a teen. In 2019 I moved here to Germany and naturally had yet a new Cardiologist. It was 2023 and I had had no sign of Afib, even on a 24 hour monitor. This was six years with no outbreaks! He suggested I try stopping, and using it only as a PIP. That worked for about three months, when I had another episode. It did stop after the last dose ( I was spacing them ) As it was not time to see him again, I went to my GP and she suggested that I go back onto Flecainide but at the original dose of 50mg twice daily. So far so good. I see the Cardiologist again in January. He was not that happy that i had started taking it again, when I saw him this past May. We will see what he says, but he has told me, " it's not so much what we tell you, it's all about how you feel! ". He also put me on a blood thinner, Edoxoban.

Pommerania78 profile image
Pommerania78 in reply toBudken

I'm sure you have thought about it, so, why do you think the Metoprolol caused you the problems? Thanks.

Budken profile image
Budken in reply toPommerania78

Actually I never thought about it. I did have problems with it in the beginning and they reduced the dose. The literature on it, says it can cause erratic heartbeats.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi Paul

138 a good number but who got you there.

I checked your welcome to your website...

And just so happened that a medical place sent me A1 on Oncology.

I thought A1 was all to do with robots. The 2nd way to remove my Thymus via Robot. Doubt whether NZ has A1 surgery yet.

Yes, I, too, have been diagnosed AF 5 years.

cherio JOY. (NZ)

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Morning Joy. AI is just beginning. My neighbour has a AI washing machine! He takes a photo of his washing and shows it to the washing machine. AI auto-sets the time and temperture and it's away!

It will change the world - whether that's for good or bad awaits to seen.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi

Um I use my intelligence to wash my clothes well.

Temperature and speed of spin is very important.

I would hate A1 to takeover.

And I'm not getting into any car self-driving. One ran over a pedestrian!

I use my head to calculate mathematic sums and check any change. I wish to keep on doing this.

I'm getting used to an automatic car. A ticket was sent for speeding 66 in a 60 zone at the bottom of a steep hill where school was out, Saturday afternoon with n o t h i n g around except the plain police car with someone holding a camera monitor.

Give me a manual any time so I can use the gears to slw down!

Good night.

cheri JOY

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Night Joy.

It's 9 am in the UK now so I'll say good morning too! I also prefer a car with a gear stick - I bought an automatic gear change car years ago and would not buy another.

Sleep well.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi

Its 12 midday. JAZ is asleep and I'm walking to shops for a birthday card to Queensland, Australia to my granddaughter. I akways send her a NZ calendar.

Last year's sent in November wasn't received by her birthday 5th December!

The story of what happened to the envelope ! My 0 with a top bit for 6 went to 0 in the same street. The girls left in January whilst this envelope was circulating.

The guy at 0 sent it back to my as sender, I was furious how could this be.

I used 0's remarks and sent it back!

She finally got it at the new address in February.

Oh dear and it's not cheap to semd AIRMAIL.

We will try again.

The soil has warmed - my tomatoes and beetroot have finally shot ahead.

Now my friend can plant his capsiums. He was too early last year.

Onions, beetroot, Kale, beetroot needs lot of lime.

Tomatoes, potatoes or kumara do not need any - acid soil.

But lawn needs lime if weeds creep in.

Haooy gardening.

Good news um, the 3 calcified areas haven't grown so a CT Scan 6 monthly will be my survelliance.

But Radiography does not mention Thymus but just a nodule 19mm x 9mm. Is it the Thymus or not and the other 2 8mm and 7mm lymphs - all calcified.

My reading into calcification is that there is cancer somewhere in the vicinity.

I'm confused.

cherio JOY

Night to you, day to me. I played my Japanese CD. Nice music. We haven't heard from Savignon for ages.

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Hi Joy.

I'm pleased to hear the postal issue was resolved!

The price of a 1st class stamp in the UK is £1.65. Crazy money to send a letter. A friend of mine sends about 60 Christmas cards a year which would cost £100 - she isn't sending any this year and will give the money to a good cause.

I checked out your medical concerns with the chatty fella. I'll copy and paste the reply as it may reassure you a little. Note this is not medical advice but something to discuss with your doctor.

Good morning (UK time) and good evening (NZ time).

Paul

It's great to hear that the calcified areas haven't grown and that you're on a surveillance plan! However, I understand your confusion regarding the nodule and the lymph nodes.

The thymus is a gland located in the upper chest, and if a nodule is noted in that area, there could be some concern as to what it might be. The presence of a nodule (19mm x 9mm) could potentially be related to the thymus, but the radiology report's lack of explicit mention of the thymus makes it unclear.

As for the calcified lymph nodes (the 8mm and 7mm ones), calcification can sometimes occur in lymph nodes that have responded to previous inflammation or infections. While calcified lymph nodes can sometimes be associated with cancer, they can also be benign.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi Paul

Thanx.

I read that on one trial calcification in papillary thyroid cancer lead to 85% being cancer in that area.

As papillary cancer grows .5mm per year, I did not think there would be a warranted note that the items in this suspicious area are cancerous. Also I have iodine infusion in 2 cT Scans and the RAIodine ?Chaser Infusion 6 mths prior.

My Thyroglobin Serum was at 1.2 then decreased 1.1 (and .99 at another lab), then it rose to 1.9 and now back to 1.1. Antibodies go between 15 and now 14.

Serum level without thyroid is used as an indicator of cancer papillary in my case return.

The actual initial carcinoma in right lobe was 19mm x 7mm.

So, Paul I am not convinced that these 3 areas are not cancerous still. The Iodine could be having a 'kill' on them.

Why don't the CT Scan Radiologist call the nodule the THYMUS. Mine should have shrunk. The Surgeon declared he thought it was myt Thymus when I saw him 6 weeks ago.

I hope he rings. He didn't explicitly ask for my THYMUS to be looked at.

Thanks for looking.

cherio JOY. 75 (NZ)

Today we had an apology to the children - now adults who were abused, shocked, beaten at religious, government care places from our National Prime Minister.

AND

a team of Maori and others walking from Cape Reinga through Auckland to Wellington to Parliament to state the wrongs of British taking land and the Treaty of Waitangi (3000). South Islanders also waling their way up to meet in Wellington.

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Hi Joy.

I wish you all the best concerning this. Try to be positive (easier said than done I know). Mindset can often play an important role concerning your heath.

Keep us updated with how you get on. Good luck with it all and report any changes you notice to your doctor promptly.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi

Whilst in UK I sent paperwork to Massey University.

Carefully marking it PRINTED MATTER it was cheap.

Try it as it should be cheaper.

I send 2 calendars.. 1 to Australia and 1 to UK. Usually cost $2.60 F/S envelope Australia and $3.60 F/S envelope UK. Both Airmail. No snail mail now.

We can buy a book of NZ stamps with no value. If we keep them they go up in value. Their new value goes for sending overseas.

Otherwise emails, poems, birthday wishes.

We get 3 x mail deliveries into our box a week. Bank Cards and Statements, Hospital Notes come via Courier. Some need signing some don't.

There is talk about no more Postie and group delivery ?? especially for rural.

What next, JOY

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Clinician from Surgeon came today.

Repeat CT Scan with Iodine in another 6 mths. Early May 2025.

My intuition says to me every time iodine infusion or dye is used, these areas shrink.

e.g. the lymphs calcified are now 7mm and 6mm and not 8mm and 7mm.

the 19mm x 9mm supposively Surgeon thinks it is my Thymus is now 19mm x 8mm.

Thyroglubin serum has gone from

1.2

1.1.

.99

2.1

1.1

between all the iodine infusions/dye.

But he says if still no change next time my test will revert to ultra-sound and probably yearly.

Then the change will be seen that they are growing again. 0.5mm growth in 1 year is hardly seeable.

I've written to the surgeon asking for proof that my Thymus doesn't have cancer.

cherio Joy

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Good luck Joy. If you don't get a response go to PALS assuming you have them in NZ. Have a Google about them.

Have a great evening.

Paul

secondtry profile image
secondtry

Yep, be positive & persistent and the clouds do clear!

Paulbounce profile image
Paulbounce in reply tosecondtry

So true Secondtry. Enjoy your week.

Paul

pusillanimous profile image
pusillanimous

Gosh Paul, you made me check on my first diagnosis, it was 7 years ago! Since in my case all my family have it and it's virtually asymptomatic, goodness how long I had had it before diagnosis. Fortunately, I was prescribed an anti biotic that did not agree with me and which caused alarming vomiting and made my GP do an ECG after discovering my HR was 140. Bingo: straight off to Cardiologist, couple of nights in hospital even though I had returned to NSR en route to his rooms, and I was inducted into the Afib Club - lots of people aren't so lucky ! I'm convince my vegus nerve is involved !

Paulbounce profile image
Paulbounce in reply topusillanimous

Hi Pusillanimous.

Afib can be certainly heredity - I think your family all having the condition shows this to be true. I feel anyone who has a family history of Afib should be regularly checked.

Paul

Rainfern profile image
Rainfern

Thanks Paul, we need posts like this to keep things in perspective. It’s great how you’ve dealt with the ups and downs and when I was a newbie, scared and miserable, this approach was the most important thing I gained from this forum. I know now that if/when AF returns my life will keep ticking along with whatever limitations, and my attitude and how I frame the situation will be the most important focus of attention, so I’ll save your post for when I need it!

Paulbounce profile image
Paulbounce in reply toRainfern

Hi Rainfern.

What a great post...

when I was a newbie, scared and miserable, this approach was the most important thing I gained from this forum

So true. The support you get on HU is second to none 👍

Paul

Fullofheart profile image
Fullofheart

This year is my 20th anniversary of life with an AF diagnosis. 21 years with it I think. I've just had my first ever year off, following 3 ablations.I've not hit 50 yet. I developed it early in life (late 20s) and it moved to persistent when I was in my 30s. You definitely learn to roll with it.

Paulbounce profile image
Paulbounce in reply toFullofheart

Hi Fullof heart.

You certianly learn to roll with it. You were young when you first found out you had Afib. It sounds like you have the 'right mindset' and are coping well. Nice work - keep it up ;-)

Paul

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