FOUR YEARS POST SURGERY X 2 - British Heart Fou...

British Heart Foundation

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FOUR YEARS POST SURGERY X 2

dg451 profile image
34 Replies

Hi everyone, I just wanted to say hi and tell you that there truly is life after heart surgery. I had aortic arch replacement, descending aorta replacement and aortic valve replacement in 2014 from which I nearly died, I was in a coma for 4 days and in ITU for a month, it was the most traumatic and surreal time of my life. 10 months after leaving hospital I was back in for a second unplanned operation for an aortic aneurysm on the arch graft in 2015. The second op was a doddle in comparison to the first but It was like life stopped for me. Pre surgery I loved travelling and exploring and getting out in the open and seeing nature. That all stopped. Along with my physical strength, my courage also went. But slowly and surely recovery is progressing in the right direction, so much so that for the first time since surgery I took myself off to Wales for a weeks walking and exploring - all be it very slowly and steadily. It was absolutely liberating and thrilling and one of my biggest milestones. So you see, even though things may feel frightening and devastating for you now, never stop believing that you can come through and will come through and that life on the other side of surgery can get better and better.

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dg451
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34 Replies
Shoshov profile image
Shoshov

good for you dg. onwards and upwards. i like reading nice stories like yours. it gives us all a lift too❤️shiona

dg451 profile image
dg451 in reply to Shoshov

Hi Shoshov, thanks so much for your kind words, I've been quite overwhelmed by the response in all honesty :)

Shoshov profile image
Shoshov in reply to dg451

your very welcome. take all the best wishes and encouragement and fly❤️

Well done, it’s great to read inspiring stories like yours. Onwards and upwards, you are truly a survivor. 👍

dg451 profile image
dg451 in reply to

thanks Happyme, onwards and upwards for sure , it has been a bit of a journey that's for certain

Fortepiano profile image
Fortepiano

What a lovely post. You've had two really huge surgeries and it's no wonder that they took time to recover from both physically and mentally. I'm so glad you had a good week's walking - I hope the weather was good. Walking and nature are enormously important to me and my husband as well and I truly believe getting out in the natural world is immensely restorative to the spirit as well as the body.

dg451 profile image
dg451 in reply to Fortepiano

Thanks Fortepiano, absolutely agree with you about nature and walking, pre surgery I was also a very keen cyclist too but I haven't quite got back to that level of fitness, or if I'm honest that level of courage either. But hopefully I will.

SpiritoftheFloyd profile image
SpiritoftheFloyd

What an inspiring story. After such a long recovery it must have been so rewarding to finally get away for a week, well done.

Runnerbegood profile image
Runnerbegood

Inspirational! Thank you for sharing.

As others have said thanks for sharing such a positive post. Really glad to hear the massive improvement you are making - hope you're back out again exploring soon!

Janma123 profile image
Janma123

That’s great, well done and I hope you can enjoy many more excursions!

granniea profile image
granniea

Many congratulations and your story really is inspiring. My husband is about to have an aortic valve replacement in two weeks and it is good to know there is life after major heart surgery.

dg451 profile image
dg451 in reply to granniea

Hi Granniea, thanks so much for your kindness, I truly wish your husband a very speedy recovery and return to good health when he has his valve replaced. Is he having the metal valve or animal one? I have a metal one because I was only 47 at the time of surgery , it means lifelong warfarin but its a small price to pay. I've always been able to hear the valve and told my cardiologist because I was worried, but he just gave me a patient look and said he'd be worried if I couldn't :D that rather answered that question.

granniea profile image
granniea in reply to dg451

I am so glad to hear you are doing well - very young to have valve replacement. My husband hasn't had any symptoms - he is 65. He is having a tissue valve - he didn't want to be on warfarin. Thank you for your good wishes and do say a prayer for him - I am very nervous about the whole thing.

Keep up all your good work and may you live a very long and happy life.

Saffron63 profile image
Saffron63

Thank you for posting, it’s just what I needed to hear right now, your a star.

dg451 profile image
dg451 in reply to Saffron63

HI Saffron63, Im glad that my journey has been able to help. If I can help do let me know.

Thank you . You give me hope , through a struggle to get better .

dg451 profile image
dg451 in reply to Nomorechocolate23

Hi Nomorechocolate23 , thanks for your kindness, im glad I have given you a bit of hope, you can get better , you can get through the struggle.

Nomorechocolate23 profile image
Nomorechocolate23 in reply to dg451

Hello Dg451

My pleasure . Your words do give me hope . And I believe in what you say , even though I don't know you , as I believe you are sincere and kindness shines through you . Thank you again .

Boblell profile image
Boblell

Thank you for that update DG451, great to hear you are doing so well after what must have been a very frightening experience for you and your family. I also had a valve and arch replacement (2017) but have now found out I have a 'descending' aortic problem and may have to have surgery. I understand the descending is harder to get at being behind the heart, so I am trying to find out more about it, but it seems not many have had this specific problem. Good luck in your continued recovery.

dg451 profile image
dg451 in reply to Boblell

Hi Boblell, thanks so much for your kind words, wow, you wont believe this but I have never spoken with anyone who has had arch/valve replacement let alone arch/valve /descending aorta replacement before. When will you find out if you have to have the descending aorta surgery? I do remember my surgeon telling me about the replacement they use, I cant remember much about what he said but I do remember he said it was made of material that isn't rejected by the body, strange they are the only words that stick in my head. I do wish you well, are you having to have the tests etc, angio's, echo's and that?

Boblell profile image
Boblell in reply to dg451

Hi DG, My first open heart valve and the arch replacement didn't go well, with having a stroke coming round from the operation, so I am quite apprehensive about any further surgery, I am due another MRI to see if it's grown even further in the next month or so that will determine if I go under the knife again!

SerenK profile image
SerenK

Wonderful to hear, hope you have many more years of enjoying the beautiful Welsh coast and countryside, my homeland, hiraeth (a longing for home) x

dg451 profile image
dg451 in reply to SerenK

Bore Da SerenK, Wales is my second home, I just adore the country and the people and the language. I hadn't been back for 5 years , 5 years where I just pined for the place and my two main milestones for recovery were 1) reaching my 50th birthday (I was 47 when I had the first op) and 2) going back to Wales - thankfully I achieved both. Then at the start of this year I decided to learn welsh, wow. :)

SerenK profile image
SerenK in reply to dg451

I don't speak welsh, but miss the accents and the people. Am living in the West Midlands for the past 20 years, and am awaiting OHS next week, aortic root and valve replacement, with graft to ascending aorta (aneurysm) and possibly the mitral valve may need, replacement also. To say I am apprehensive is an understatement, but want to get it over with.

dg451 profile image
dg451 in reply to SerenK

wow SerenK, definitely an apprehension I can fully understand, how are you coping with the apprehension? Was this , like me, a congenital condition you were born with? I was born with a bicuspid aortic valve and was told that in my dotage i'd probably need a new valve. How wrong they were.

SerenK profile image
SerenK in reply to dg451

Bicuspid valve, only diagnosed12 weeks ago, I am 64. I am reading as much as I can about the surgery, but to hear of others recoveries is a major reassurance.

isobelhannah18 profile image
isobelhannah18

Fantastic. Thank-you for taking the time to post. It was reassuring and motivating.

OttoK profile image
OttoK

Hi dg, such an inspirational story. Thanks so much.

Cheers, Otto

Nic25 profile image
Nic25

Great post dg451 and congratulations on coming out the other side with such a positive attitude. As someone who is just six months on from an (as yet uneventful) AVR I have had much less to deal with than you but also a long way still to go. Your post gives hope, confidence and inspiration to us all. Hope it continues for you in the same way for many more years. Good luck. Nic x

Jessiebrown profile image
Jessiebrown

Hi I know it’s a long time since you posted and I really hope you are still well, it is good to hear of people who have eventually recovered well from heart surgery.

I had open heart surgery just over 2years ago and like you I was very ill and nearly died,what I would like to know is what were your symptoms that made you have your second operation, I do have AF and should have had a maze inserted but my opp took too long-haven’tn been well since my surgery my breathing is bad and getting worse it wakes me at night and I have to get up and walk around ,I also have dreadful sweats,my legs swell at night and I generally feel unwell light headed and dizzy all my bloods ,scans, including pet scan xrays all come back fine none of the Drs know what to do ,I wish I could afford to go private back to papworth to see if they can find what’s going on.sorry for the long post but I really want to get back to my life and ride my horse,I am 74 and always been active.best of luck and health to you

dg451 profile image
dg451 in reply to Jessiebrown

Hi Jessie, I'm so sorry to hear you have had such a bad time of it. Have you been back to see your cardiologist? I really would suggest that you talk with him/her and set out everything that you are feeling .If the dr's are at a loss then perhaps ask for a second opinion. I have been left with Paroxysmal AF but for the first 2 years i was in constant fast AF which was a bit scary at first, although now thankfully it has settled in PAF. My second surgery was for an aortic aneurysm on the aortic arch graft that I had done during the first round of surgery. I was also left with permanent asthma which was very bad at first but i have learnt to adjust to by lifestyle and sleeping on 2 pillows which props me up and asthma inhalers. Please do talk to either your cardiologist or your GP or one of the cardiac nurses here at the BHF, they have answered a few of my questions and put my mind at rest on a number of occasions in the past. I wish you all the very best and really hope that your symptoms are helped very soon. If i can be of any more help please do let me know. All the very best to you, Debbie 🙂

Jessiebrown profile image
Jessiebrown in reply to dg451

Hi thank you so much for your reply,I have spoken to my cardiologist on the phone in November but I don’t think she realises how ill I feel and she is phoning me again in May !!! I have felt dreadful and have tried to contact her but it’s useless ,my GP said he would write to her but I still haven’t heard from her, I haven’t been right since my opp and wondered if something like yours has happened to me ,I had a replacement ascending aorta as there was a huge bulge on it ,I also has a replacement aorta valve and repair on the mitral valve, I had this done at papworth but my local hospital is in Norfolk ,I feel I should go back to the Surgeon who actually did the opp and let him investigate what is going on,he did say before he did it that I would feel so much better and would be able to breath better straight away,but I feel worse than before I had it done,I think COVID has played a big part in not being able to be seen,I think if I could actually see a cardiologist I could explain how I feel,how did you know you had to go back to your surgeon what were your symptoms?

Thank you again and keep well xx

dg451 profile image
dg451 in reply to Jessiebrown

Hi Jessie, I had absolutely no symptoms with the aneurysm , I was trying to get back into some sort of fitness after cardiac rehab and cycled a lot as I loved cycling pre surgery, but my aneurysm put paid to that as I had a swelling start to appear on my scar. What I would do were I in your shoes is write to your cardiologist. This is what I do to mine, I email him via his secretary its quicker. That way you know that your cardiologist will get it and will have to respond. Or write to your surgeon. Unfortunately it has been my experience that you have to chase it up yourself rather than rely too much on the GP. When my aneurysm came up I asked a pharmacists advice as I thought it was just something to do with the scar but she told me to go immediately to see my gp. I saw one of the docs as an emergency who , bless her, didn't have a clue and admitted that and said that she'd write to my cardiologist for advice. Thankfully I wasn't too happy with the advice even though I know she did her best and did manage to see my gp the following day or so and he immediately knew what it was and rang my cardiologist and I was got in there and then. So write to your specialist. Especially as things are so uncertain at the moment with Covid. Just outline all you are feeling in regards to your health and recover and the symptoms you are experiencing. Do let me know how you get on x

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