My JAPAN HOLIDAY OVER -1st holiday wi... - Atrial Fibrillati...

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My JAPAN HOLIDAY OVER -1st holiday with AF.

JOY2THEWORLD49 profile image
33 Replies

Well folks I returned home safe and sound on NZ soil 20 October.

Yes, I brought my AF Persistanr with me - I wanted to leave it there! No such luck.

I was careful with lists so I didn't forget anything. But 4 hours time lag didnt take long to get it how I wanted it to work. I kept NZ time on my watch and JAPAN time on cell, TV etc.

I asked AirNZ for Support at the Airport and there was no breaking speed limits. Customs let us through the Assistant queue. Great. Friendly staff except the last at Auckland Airport. Man asking an old lady what she had in her bag! Then Customs man said that I hadn't signed my new PassPort en route Auckland and back, the man was pushing me on. He was promptly told off.

The culture was all gaiety, bowing, manners and helpfulness.

The food paid for al breakfasts 6.30-9am was great as thyroxine at 5.30am. Al hotels 3 star. On the last Hotel, breakfast change everyday!

Frustration was all the stairs in train stations, lots f walking with no seats, and getting my train tickets. It took heaps out of me as I had to stop any exertion frequently. Asking for exits out of subways a battle. Changing trains a battle. Always there were disabled, elderly, mothers seats and if anyone was using them it was a miming indication.

Walking to sites - castles, temples I thought were close but not even 300m elevation was easy and fast. I took temples from afar with a framed picture of trees in the surrouning park.

Apart from Airports, principal train stations most shops were food shops.

NZ currency wasn't wanted in currency exchange!

So although I had an educational trip away I've come back SO FRUSTRATED. I've spoken to the DR about me changing from Bisoprolol to say the S one which regulates Systolic level. With BP that was the one higher.

Rapid heart rate was finally curbed by CCB Diltiazem 120mg CD.

Has anyone got any tips. With a severely Dilated Left Atrium as left on Metoprolol with a day rapid pulse of 186 breathless and pauses at night on my usual 47bpm for 1 year 5 months, then a heart specialist put me on Bisoprolol for 9 months 156 Day and remain with 47bpm Night.

Sorry no ablations, cardioversions, anti-arrhymic drugs like flec you cannit have as your ECHO show abnormality of your heart.

This lass used to run 1st in 100m/yds and throw a great Discuss but not any longer and she is frustrated.

OK thyroid cancer looks like has been missed in 2 lymphs and thymus but the CT Scan on Wednesday should find out. A repeat from last February and the PET Scan.

Fingers crossed.

cherio JOY. 75. (NZ)

As I did 5 long days at NZ Elections last year it's TASMANIA march 2025 here I come but with a rental car. It will be my third time lucky to get there. AirNZ cancelled the direct flight AK-HOBART last year.

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JOY2THEWORLD49
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33 Replies
Paulbounce profile image
Paulbounce

Good luck with it all Joy. I wouldn't be happy with 156 bpm during the day - certainly if that's at rest.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi Paul the Bouncey Lad

No at 186 Metprolol I could hardly exert myself instead sleeping.

No at 156 also caused sweating and overheating. Wanting a cool shower 5 times a day in summer.

But now 60s - Rapid in control. Great and allows the 47bpm to take over at night.

I'm hoping maybe trying another from Bisoprolol might change things. I'll be a different gal.

cherio JOY.

Alphakiwi profile image
Alphakiwi in reply toJOY2THEWORLD49

I had the pacemaker put in 3years ago .I think that was because they saw i had a severely enlarged left atrium in whangarei. Anyway it was the best thing since sliced bread at the time as I now have nothing over 60 bpm.sounds like hard work going holidaying in Japan for sure

Paulbounce profile image
Paulbounce

Hi Joy.

Sounds like Diltiazem has done its job - I will investigate this further.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi Paul

Care needs in taking on Diltiazem. Apparently those with abnormality in theit lower chambers - Ventricles cannot have it.

My dose was 1/2 @ 180mg CD but to go from 156 to 51 in 2 hours made me light headed so by reducing the then 10mg to 5mg to 2.5mg Bisoprolol and reducing to Diltiazem 120mg CD made the goal. 60s H/Rate until afternoon then still under 100 it ramps up and at Night 47avg bpm.

The Specialist had in his report written that I could have up to 360mg!

Heck no. That is why one needs to be very careful when the introduction takes place. Monitor it carefully, Paul.

cherio JOY. 75. (NZ)

Paulbounce profile image
Paulbounce in reply toJOY2THEWORLD49

Thanks Joy.

Paul

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toPaulbounce

Hi again

Interesting ... they are now doing trials for those arriving in A&E or Stroke.

To offer Metoprolol (which I was in 2019) a Beta-Blocker or a Calcium Channel Blocker like Diltiazem, TO CONTROL rapid heart rate.

They should have done this with me. A far better outcome but I struggled with rapid and persistent AF through Metoprolol 185 H/rate and breathless and pauses at night 1 year 5 months and 156 H/Rate 10 months on Bisoprolol. Nights were all 47avg bpm.

Wouldn't my life been better. I had not omly myself feeling exhausted but worrying kids when I drove to Auckland 3.1/2 hrs away.

Mistake NO STRKE FOLLOWUP to reassess meds.

Now I'm left with a severely dilated left atrium.

Can I redo my life that I lost?

cherioJOY

Rainfern profile image
Rainfern

Hi Joy, well done you, getting away! I have a friend just back from Japan and it was an ordeal for her even with good health! But such a lovely place, and big cultural differences!

I’m sure your heart will settle down and I wish you luck with your test results. I would love to go to Tasmania - hope you make it next year xx

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toRainfern

Hi

Thank you.

I need 'to get my ducks in a row as the saying goes as my surgeon over 20 years (2 surgeries) is retiring at the end of December.

I've said to him, please do what needs doing before you go and he has promised so the CT Scan is early November.

The 'girls' there will 'home' into seeing what's happening with 2 lymphs and my thymus.

cherio Joy 75 (NZ)

Jalia profile image
Jalia

Well you've certainly had an adventure Joy. Good for you ! I certainly couldn't have endured it....maybe 10 years ago!

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toJalia

Hi

I see you have your arms full with 'caring' for your hubby with Parkinsons.

That's a marathon on its own.

I looked after my Mum 87-90 years whilst continuing to rehabilitate with a broken femur. Her sarcasm came out in her. Dad had fallen on her on day 1 holiday in Cairns Australia.

I was back from my working UK holiday of 6 years and by then Dad had passed. She lived with me in a architecturally (mine) self contained Unit 1m away from my Lockwood Unit.

I felt honoured.

Later went into a Retirement bedroom and at 93 sadly died of an undiagnosed UTI. 3.1/2 hrs drive away, I saw her every month. A very sad ending.

With parents who enjoyed time away overseas I caught the bug. But the 2019 dark time interrupted my rhythm.

"An enquiring mind" is what my teachers said about me.

You take care. Reading books and watching videos should have some steps in capturing these exotic places.

cherio JOY. 75. (NZ)

Alphakiwi profile image
Alphakiwi

Dr Wong has me on metoprolol 8mg. Also 47.5 candersarten but i have stopped the candersarten due to the myriad of side effects. Even the other one gives me side effects but not as bad as candersarten although it's still an ongoing experiment on that one. Do you have a pacemaker? I've had that over 3 yrs now but lately it's been giving me some pain on the chest site. They checked it out at the kk hospital..Good you back home wellCol

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toAlphakiwi

Hi

The new view is .. for A&E or stroke with rapid h/rate and or with AF trial of CCB Diltiazem or Metoprolol should be trialled. With me the Diltiazem would have done the trick!

Metoprolol is my banned med, breathless, uncontrol of heart rate and 24hr showed pauses at night. Along with inhibrace an Ace product and I was put on Loser... which didn't control my systolic level of 180.

No I don't need a pacemaker. Pacemakers are for those wh have LOW H/Rate. I was diagnosed along with the Left Frontal Lobe stroke with an embolic type, rapid and persistent AF and then shadow on thyroid - papillary thyroid cancer - right lobe carcinoma.

Left with rapid heart rate Day, The two ECHOES show severe dilated left atrium. That's what I am dealing with.

Ventricles working well.

The ablation of the AV Node is the last resort.

I'd have a 24hr Heart Monitor and what I got from Metoprolol consider Bisoprolol instead, perhaps.

I understand that you have had ablation/s. They lower your H/Rate causing to have a Pace Maker.

I have had NONE.

You will see what Dr Wong says.

The Can.... med is a new modern one, I think.

cherio JOY

MaryCa profile image
MaryCa in reply toJOY2THEWORLD49

But if they did an AV node ablation this pacemaker would pace your heart at 60 and you wouldn't have the fast heartbeat any more

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toMaryCa

Hi

Your reply should be to AlphaKiwi.

I don't have a Pacemaker but AlphaKiwi has.

I meant that his ECHO shows the same abnormality as I have.

I was thinking if as a result of that abnormality/damage no ablation means no ablayion of whatever which would also include the AV NODE.

cherio JOY

But all you AFERS .. taking both a CCB and a BB - it is imperative to take these 12 hours apart. PLEASE REMEMBER.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toAlphakiwi

Hi Mr AlphaKiwi

I saw 2 chasing early morning during my East Cape visit around the loop and before they got those floods.

Um. You have got your measured mgs around the wrong way.

Metoprolol is 47.5 and Candersarten would be 8mg so I read.

Better get them right for others. Candersarten either 8mg or 16mg later. Side effects backache, dizziness etc. Sound awful.

cheri JOY

Alphakiwi profile image
Alphakiwi in reply toJOY2THEWORLD49

Your right Joy. Metoprolol 47.5mg, candesarten 8mg. No ive never had ablation because they just won't work on me due to significant left atrial dilatation.Dr Wong says AV nodal ablation remains an irreversible option. I had the pacemaker put in 3 years ago in Auckland and I was to have av node ablation. I was told to go home and discuss with wife and family. I was then passed over to Raewyn Fisher and the ablation never went ahead so iv put up with another 3 years of terrible drugs. I think maybe it was something to do with covid being around at the time, just maybe. At 82 and having been a top athlete around the country I'm not to worried about the future on ablation but i am more worried about loss of quality of life on drugs.. guess what my discussion with Brandon will centre around next fortnight time

Colin

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toAlphakiwi

Hi

So you are same as me severe dilation of the Left Atrium.

You could have diltiazem if your Ventricles are OK! But this med is to dranatically bring down Heart Rate. Not sure whether you are High/Low.

I think you can't have the AV NODE ablated like anything else becuse of your abnormality.

Not sure what your most awful symptoms are.

I get none except for the tiredness, loss of energy and sleeping lots. Was in Kerikeri from 12-3pm then Kaeo Dr 4.15 and home and after greeting my JAZ M.Schnauzer and letting her out and in, I slept for 2 hours. Then awoke for tea and back to sleep at 9.30.

Life is for living not sleeping, eh.

Used to run, throw discus until 40 with my kids, played tennis, badminton and now outdoor bowling when I get my shoulder back almost. Tried fishing but weight was too heavy so far.

I think BP pills are debilitating. Diltiazem just brings down heart rate i a hurry from the start.

cheri JOY

Alphakiwi profile image
Alphakiwi in reply toJOY2THEWORLD49

Hi Joy, ,thanks for your interesting observations. I found a letter of 24 9 21 and noted that Raewyn Fisher had taken me off Diltiazem. I was having unusualectopics . I was already on the pacemaker by then. I've been on lots of med trials. Amioderone out for me. Also Sotolol.. The amioderone actual flat lined me for some time in ambulance. The sotolol dropped me on the floor in my kitchen not long after I started it. Awful stuff.Colin

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toAlphakiwi

Hi

Oh dear.

I wanted to try something different ... say like Sotolol.

You know COLIN that Cardesartan is Diltiazem! Often these meds have two names.

So what are you actually taking now?

If you are taking both Diltiazem and Sotolol as one is a Calcium Channel Blocker and one is a Beta Blocker you need to separate them by 12 hours.

This information was given to me ny NZ. Heart Foundation Nurse who actually worked with Dr Wong at some stage.

I hope the spelling is right as your C... med is a new name to me.

cherio JOY

Alphakiwi profile image
Alphakiwi in reply toJOY2THEWORLD49

Not taking either diltazem or sotolol. Have been on both though. I stopped candersarten early this week so am on metoprolol only plus the Rivaroxaban.Ive been getting lots side effects a day worked on tracing which is the main culprit. And yes it's the candersarten so far as I was getting worsening arm jaw and back pain. A of bleeding in gums. Dry hot cough in chest runny nose and sneezing during the day. Itch face etc at night drives me nuts..

All those much easier so far. I've had some near fainting in morning . Not sure which yet

On just metoprolol today I'm really fatigued and sore hips and legs in afternoon. Timing is all weird on thise things. I will have only the metoprolol to experiment with till I see Brandon. Brandon is quite happy with me trying out doses and times at this stage.i just don't seem to get my body sorted on anything.

pusillanimous profile image
pusillanimous

Glad you are all in one piece and had a great time!- everyone loves Japan. My son and nephew go on business and my cousin lives in Tokyo - he was transferred there , he works for an American Hotel group and his job sees him placed in various Far Eastern countries - he and his family have been posted to Hong Kong, Bangkok among others, but he's hoping to stay in Japan. He's also a New Zealander !

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply topusillanimous

Hi

Great.

It's such a 'warm' atmosphere.

I think it's the little bow and nod which gets one in a 'positive' feeling. You are surrounded by people who care even though they may not speak ENGLISH or your langusge.

The yound students are great - speaking to them they come out with their Cell and maps or you write your question.

Moneywise Yen is 1,000s. i.e $NZ65 is about $5000.

I brought home 3 x 1 Yen, and 5 Yen only. I tried to rid of the small stuff as i went. I had 2 pouches. 1 x 1900. 500 Yen. and rest others and of course notes are notes. Exchange happens in most currencies BUT NOT $NZs.

I kept my watch at NZ time but cell was JAPAN for pills.

I'm glad I went.

Today NZ to Yen $ to Yen. 90c NZ to 10.00 Yen. I think

cherio jOY

Camelia23 profile image
Camelia23

Sorry about your frustration. It sounds quite a tiring if interesting journey Good luck with everything else

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toCamelia23

Hi

Thanx Camelia I guess that we all have our personal story.

But when I think back if no hospitalisation, they would not have found the thyroid cancer.

So in an unusual way I'm thankful to my team. Exceot the Endocrinologist.

Off to table tennis this afternoon.

cherio jOY

Letofeyd profile image
Letofeyd

Sorry to hear of your difficulties. For anyone else visiting Tokyo, there are excellent detailed maps online of train stations showing all elevators. All below ground stations have them.

I *did* leave my AFib in Japan, as I had the Wolf Ohtsuka Procedure there at Newheart Watanabe Hospital 9 months ago.

Paroxysmal, but every other day for 8-10 hours. Drugs were not working.

I took the plunge.

NO AFib since.

No drugs.

Life back.

And a fantastic month in Japan to remember.🌸

I recommend it.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toLetofeyd

Hi

Wow

You are so lucky of being FREE of IT.

I was informed that this move was worth looking at. But I reminded them but because of abnormality no ablation, no cardioversion or Flex....

So I'm glad for you.

I trust it will keep you FREE.

cheri jOY

Ilovedogs12 profile image
Ilovedogs12

Hi Joy,

Good luck with the CT scan on Wednesday x

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toIlovedogs12

Hi there

Thank you.

Yes, this is going to be a big step again if this test is another 'bad' result.

But I'll catch my surgeon before he retires end of December.

cherio jOY

Emoryrich profile image
Emoryrich

The way you are handling multiple health challenges is an inspiration. Life can indeed go on!

Your mention of Japan caught my attention -- I am going there next week, a 14 hour trip for me from Canada. And, yes, there has been some fretting, particularly after having an episode while on vacation earlier this year in the U.S.

Thank you for sharing, Joy. And best wishes for a positive outcome with the upcoming investigations.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toEmoryrich

Hi

I do hope that you have paid for your breakfasts!

Every morning at 4 x 3 x 3-star hels I relaxed at about 7am with a collection of chosen little dishes!

All 3 hotels were amazingly comfortable. Sometimes 1-way almost to a site great by taxi but using the subway back worked.

Keep relaxed and remember trains have 'disability' seats in a middle carriageway.

Let us know how you get on.

The emergency number but check it, is 110. Also check the desk phone. In one hotel it did not work when i wanted a early call. Breakfasts were 6.30 -9am.

Gee its a long flight. NZ to TOKYO was 9,30 ish hours. Arrived 6.15pm. TOKYO and early at 9.45am - through the night. AIRNZ food was super.

cheri. jOY

Emoryrich profile image
Emoryrich

Hey Cheri, yes, I have arranged breakfast at each of my hotels. I find that to be the best way to be off to a good start. I have a travel guide for the first days in each city to help me navigate local public transit.

I spoke to my cardiologist about what to do if I go into afib. He told me that I could take a half or full tab of bisoprolol (I take 5 mg daily.)

He advises that it won't get rid of the afib but it will reduce my heart rate to something more acceptable while I wait to revert to normal sinus rhythm. (So far, I always revert, although it can take up to three days.)

This isn't advice -- I am not a doctor -- but you might want to speak with your doc to see if it's an option for you when you have an episode.

Bring on Japan!

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toEmoryrich

Hi

I don't get symptoms as I have persistent AF.

The Diltiazem 120mg CD morning daily keeps my heart rate at 60s and it rises afternoon. My normal Night rate is low at 47avg bpm.

Diltiazem is a CCB Calcium Channel Blocker and made the difference in my plight to get heart rate under control.

My side effect whether from AF or meds Bisoprolol are I can't far without getting tired and want to sleep.

You have a good time. How much was the tour guide?

At Henn an Tokyo Hamamatasucho I had a room with bed facing the TOKYO TOWER. Loved it. It changes colour until 2am. Worth the $100 more fr 4 nights.

cherio JOY

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