Mini maze update.: Apologies I know I... - Atrial Fibrillati...

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Mini maze update.

waveylines profile image
waveylines
β€’18 Replies

Apologies I know I promised to post updates and haven't. I had my mini maze surgery back in September with the wonderful Mr Hunter on the NHS. I've been in NSR ever since which is amazing as I had moved to persistant Afib and I felt pretty awful all the time before surgery. I am soooo grateful to Mr Hunter and his team. Amazing.

It has however been a bit of a long recovery. But I'm definately getting there now. For me I made the right decision to have it because as many of you know my Afib was caused by cardiotoxicity from sucessful cancer treatment and heartwise I was declining with stage 2 heart failure which was worrying. I wasn't tolerant of many of the drug treatment options which has meant managing it that way wasn't very sucessful. And my EP said I wasn't suitable for catheter ablation and said my best option (and only option) was a mini maze with Mr Hunter so he referred me across to him. This was back in Jan 2023. I saw Mr Hunter in late March 2023....so didn't have to wait very long really.

I had it in my head that once the op was done I'd soon be bouncing back up. Unfortunately I had to be put on Amiodarone and for me that caused a big problem with my thyroid levels. (I already had had hypothyroidism for over 20years well managed stable for years) so even though I was only on Amiodarone for a month it's been a process sorting the aftermath of this drug out...lol. Mainly because of the very long half life of Amiodarone is 140days. Not quite back up there yet re my thyroid hormones but winning the game slowly. 90plus days since Amiodarone was stopped. And I have a lovely experienced Endocrinologist guiding me through. Very grateful to him. But as for Amiodarone wild horses wouldn't drag me back on it ever again.... Am with you Jean on that one!!

And lastly due to my bc treatment mastectomy, radiotherapy & reconstruction I have had leftside pain from the ribs/muscles being disturbed - probably from all the scar tissue etc from my previous bc treatment. This was confusing as it was right over the heart area and under my arm, causing other symptoms commonly associated with a heart attack!! This resulted in two ambulance trips to hospital (ambulance crew were most insistant!), the inevitable very long waits in a&e (I wasn't amused to be waiting in a room which said waIting room for ICU!! Scary) and eventually a short stay on a heart/lung ward. But it wasn't my heart at all!! My heart was in NSR and normal. Hurray! It's taken a long time to figure out what the problem really is and a while to start to heal/settle (ongoing) ..... I've found acupuncture and now physio to be helpful and am slowly improving now I know what it is and what aggrevates it am managing it better. I have to say weekly acupuncture has been great and allows me a few days off from taking paracetomol. Acupuncture was my idea as I decided it was worth a punt as it's very effective with frozen shoulders.... I figured ribs/muscles was simular. πŸ€£πŸ˜‚ Just to reassure my right side of my rib cage has recovered totally fine despite also having 3 very small incisions (same as left side) for Keyhole surgery. So this complication is definately due to my previous treatment causing problems with the surgery.

So I haven't posted much before because I wanted to give an honest but not negative feedback. Although my recovery hasn't been straightforward and more slow, you may wonder do I regret having the op? Definately not. My heart is soooo different now - settled calm and even. I remain amazed and in awe of it. Still cant quite believe it. How is that even possible? And instead of slowly declining as I was I am improving and that to me is just such a wonderful gift.

I'm definately a tortoise not a hare in my recovery but I don't care! The point is it's upwards not downwards as before.

I've started Cardio Gym this week (was offered this as part of my post op recovery) and I was very nervous. But actually I'm finding new found delight in being back in the gym that I had to give up on due to my Afib/cardio toxcity. And my programmes are individually set by the heart teams physiotherapists. Baby steps. Am enjoying it seeing myself being able to do it is such a confidence booster even though it's only week one. πŸ˜‚πŸ€£Looking forward to eventually getting back to my much loved walks out in the Peak district, tackling them hills which now seem a possibility... another amazing thing. Will post a pic when I achieve it!!

So I hope my little update post is not off putting to others considering the minimaze option or waiting for this op but will take heart (excuse pun!) that it's benifitting even someone like me!! My EP was spot on it is my best chance of recovering my heart health and I feel very lucky to have been given that chance. Thanks to Mr Hunter taking on my case. Bless him!!

So my Afib buddies never give up. I hope my post telling my little story to date gives you hope if other Afib treatments are not working. That even someone with more complex heart issues like me can still benifit. It is there on the NHS and people from all over England are eligible and have the right to choose where they go for this op. Mr Hunter has had cases from all over the place so it's not restricted to local patients. Though no doubt your doctor heart specialist will need to be able to justify it to your local NHS trust.

A belated Happy New Year..... may 2024 be a great year for all of you. Xxx

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waveylines
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18 Replies
β€’

An inspiring post, great news!

waveylines profile image
waveylinesβ€’ in reply to

Thank you Flapjack. 😊😊😊

BobD profile image
BobDVolunteer

Good to hear things are on the up. Yes I think people without your additional problems often underestimate just how long it takes to recover form these sorts of procdures but I am so glad you have turned the corner.

waveylines profile image
waveylinesβ€’ in reply toBobD

Thanks Bob.... much appreciated. I think I had developed a distorted view of where I was really - sort of ostrich pose - if that makes sense. Lol... which is weird as am such a face on person.

jeanjeannie50 profile image
jeanjeannie50

I'm pleased to hear that you're now feeling so much better. Mr Hunter deserves yet another gold star for his good work!

Now don't forget to keep us updated on how well you're feeling. No sailing off into the sunset and forgetting your friends here.

Wishing you well.

Jean

waveylines profile image
waveylinesβ€’ in reply tojeanjeannie50

πŸ€£πŸ˜‚ Thanks Jean. Mr Hunter definately deserves a gold star and some. No sailing away for yet a while, more like tip toeing as I gradually wind myself slowly back up!!And definately won't be forgetting all my buddies on here.... Xx

stoneyrosed profile image
stoneyrosed

Nearly brought a tear to my eye, I can sense in your post how delighted you are but cautious like the rest of us when things are going well lol. I am looking forward to your pics on the peaks, this is great news and I am made up for you. 😁

waveylines profile image
waveylinesβ€’ in reply tostoneyrosed

Thanks stoneyrosed..... You summed it up brilliantly. Yes that's definately where I am. πŸ™‚πŸ™ƒπŸ™‚ I think the thing with a roller coaster recovery nothing tells you when your finally at the end of it! πŸ€”πŸ˜‚

stoneyrosed profile image
stoneyrosedβ€’ in reply towaveylines

Absolutely 😁. But enjoy the place your in at this moment, a new lease of life never hurt anyone ! πŸ₯³

waveylines profile image
waveylinesβ€’ in reply tostoneyrosed

Yes I will and am.... Lovely words stoneyrosed. And am thankful for the opportunity..... 😍😍

mav7 profile image
mav7

Thanks for sharing your wonderful story. Best to You always !

4chickens profile image
4chickens

great review of what I know has been a rollercoaster journey.

waveylines profile image
waveylinesβ€’ in reply to4chickens

Thank you 4chickens. And I've really appreciated your support through out & Mummyluvs, alongside others....keeping me afloat when things got tough!

My only add on I'd say to others is try to make sure you have good support from your GP Practise to help with post op recovery. Mine have been woefully inadequate at best..... & that has made life tougher than it needed to have been.

wilsond profile image
wilsond

Ah that's great to hear from you ,excellent news. Keep.up the good work!Best wishes ❀️

waveylines profile image
waveylinesβ€’ in reply towilsond

Awww thanks Wilson. Am still a work in process but am definately on the up.. After nearly ten years of descent that's a miracle! πŸŽ‰

Desanthony profile image
Desanthony

What good news!

MummyLuv profile image
MummyLuv

So lovely to read your update here 😍 it sure has been a rollercoaster for you! You’ve kept strong and taken it a step at a time, you so deserve to experience that quiet heart. Much love.

waveylines profile image
waveylinesβ€’ in reply toMummyLuv

Thanks Mummyluv. I remain deeply grateful to you, 4Chickens & Saul making me aware of this option and supporting me through the ride afterwards. 😍😍😍I really do think I'm coming out the other side now.... finally. I've got my 'extra chicks' in a row: physio, Endo & acupuncture.

In some ways I'm not a great example but in other ways I am... because it means complex doesn't mean you can't be assessed for this route and a roller coaster ride doesn't mean it won't work out. I'm very, very lucky. And thank heavens for the amazing skills, dedication & determination of Mr Hunter. He truly cares.

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