Hello everyone! Well, this is a surprise. Up until 2 years ago I had had zero issues with my heart; quite the opposite as I was a pretty fit chap for late 50s, no illnesses, no surgery, no medications, last ran the London Marathon in 2019, and still maintained an unrestricted Civil Aviation Authority medical for flying (retired RAF & airline pilot). Then I got 'a virus' in Feb 22 which left me with palpitations and quite breathless, but still fully active. This year I had my first accident in 19 years' paragliding. My paraglider collapsed at low level and I fell 72 feet breaking my neck, back and pelvis, thankfully with no spinal cord damage. Rebuilt in May with 7 vertebrae bolted together and since then gradually recovering and regaining fitness.
Then 2 weeks ago a bolt out of the blue. I had noticed through monitoring my blood pressure that my diastolic (bottom number) had gone from 60s pre-accident to 40s post-accident. I'm no doctor, but I thought it odd and well below the 60 cut-off for hypotension. No interest at all from my GP, despite numerous attempts. Long boring story cut short, I finally saw a cardiologist 2 weeks ago who quickly diagnosed aortic valve regurgitation (leaking valve) and on the severe end of the scale. This was confirmed days later with an echo. Now having CT scans (second one today) prior to surgery to replace the valve.
So that's me! I'd love to hear from others in similar situations or who have been through similar experiences. Frankly, I'm scared witless by what's happened and what I know is coming soon. Any support would be very gratefully received, even if it's just a virtual hug! A problem shared is a problem halved, so they say. Thank you for reading my intro!
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Chris_Williams
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Iām so sorry to read about your paragliding accident. Iām glad you are doing better now.
It can be a shock when we are diagnosed with something when we have otherwise felt healthy most of our life. I had a heart attack out of the blue last year whilst on holiday. I was 29 at the time and I remember how surreal it felt. I was then diagnosed with having a congenital heart defect which caused a coronary artery spasm and this triggered the heart attack. I never thought I would be on a forum like this for myself or what seems like a lifetime of heart medication.
I donāt have any advice to offer on aortic valve regurgitation but there are other members in the same boat which no doubt will provide you with a lot of support and good info.
I hope the appointment for the CT scan went well today. You sound like youāre in good hands so I wouldnāt over worry.
Thank you for sharing your story & the best of luck to you for the operation.
I am not sure how many will have a similar story to you breaking your back neck and pelvis goodness me that is something
But as for the valve and operation many will relate on here
Well done noticing your BP by the way and taking action when the Doctor was not listening to you
For me I had to have a triple heart Bypass which even though it was not my valves they were dealing with I am almost sure the operation is a similar procedure regarding how they go about getting to your heart to do these procedures and others that have had it done which there are many will tell you more
What I will say is though I have always suffered with severe anxiety and it is severe and if I can get through a Triple Bypass and say it was not to bad then after all you have been through you are going to be just fine
I hope others that have had it done see your post soon and reply and in the meantime sending you a big virtual hug
Oh thank you! So kind to respond so quickly. I had a second CT today so now waiting for whatever the next step will be. I'm so glad to have found this support group after feeling rather alone for the last couple of weeks.
Well things are moving you have had your second CT scan so see it all as a positive because they do valves often and now they really are so advanced it is amazing what they can do so there is no need to worry at all
I am glad you have found the Community to as you will not feel alone anymore with this there will always be someone to give advice , listen to your concerns which does make a big difference x
No major health hiccups for me until 8 years ago then 7 major surgeries including two for cancer. Lots of recovery times etc etc but I could deal with all that mentally. Three months ago a heart attack whilst organising a big fundraising event at my house.
It is inherited cholesterol problem not like yours but the organisation that kept me sane and was there to help with any questions was the British Heart Foundation and through that to this forum. Not least about exercise. I now up to 38 lengths of the local pool. Itās not very long!
I donāt contribute a lot but Iāve learnt so much and have read many reassuring posts not least relating to a whole new ball game of 6 meds a day and what that can mean.
So my message is itās great youāve found this forum. Keep posting and reading.
I wish you all the very best in this next journey and look forward to reading about your progress.
Sending you a virtual hug. I was in a similar position to you 2 years ago and had my aortic valve replaced in April 22. It is so daunting and sometimes I felt totally overwhelmed by everything. I got loads of support from UK Aortic and Heart Defects Pre and Post surgery Facebook group. We all have loads in common!
One of the best things about the group is the monthly Zoom chats. Seeing others 2 weeks on from surgery, looking so healthy was really reassuring. I asked loads of questions and got instant answers and advice
The next Zoom is tomorrow evening at 7pm, so, if you are able to join the group and then the Zoom then please do.
Thanks Joanne - that's really useful. I'll look up the FB group and zooms. I'm busy tomorrow night giving a presentation to an ambulance service about my accident. Next time!
Welcome Chris! Glad to see your post now! What an awful couple of years but glad you are now diagnosed and being treated - thats one of the biggest hurdles these days. I can't offer advice on your particular heart issue but no doubt others on here can so sending virtual hugs as requested š
Wow hi Chris and welcome to this amazing support group! You have lead an amazing life so adventurous! Glad you was able to see cardiologist. So you have severe aortic regurgitation? I have that aswell and I also have moderate stenosis so will need valve replacement surgery eventually. Hope your CT scans go well and you aren't waiting too long for your surgery! I think I just saw you on the aortic pre surgery and post surgery on face book? I'm a member of that too it's amazing! So supportive and don't know where I'd be without it just like this one! Wish you all the best and take care keep is all updated on your surgery journey! And recovery x
Thank you! Yes, I followed Joanne's suggestion to find the FB group - there's another one that popped up so I joined that too - you can't have too much support! It feels so good finally to have support from those who truly understand. Good luck with your progression towards surgery too!
Ahh brilliant yay! your so right can never have enough support x thanks I hope to get my surgery out the way at some point I have appointment on 21st so will see how long until I do need this surgery x
Yumz, hang on in there. With aortic valve replacement I understand that it is best to leave the valve if the body is coping well but not to wait until the heart starts to show obvious signs of stress before replacing it I walked around aware of a damaged valve but with no symptoms for 19 years before it was replaced. I was blessed in that there was nothing else wrong with me, I was otherwise a healthy thirty something male when I had my surgery but I think that you shouldn't have to wait too long now, and you will notice the difference once your heart provides a normal supply of blood to all your organs without having to work harder
Thanks x oh wow 19 years! It's been 26 for me basically whole life, so did you develop symptoms after that time and that's why they did the valve replacement? I'm noticing as I get older health just gets worse I'm only 26! X
I had rheumatic fever when I was 13. After around four months mostly in hospital on bedrest I started to resume normal activities and was told initially that I might need valve replacement at some time but was monitored annually and 19 years later, while I was still feeling well had my replacement aortic valve, which is around nine years older than you are! The only thing was that I never had a sore throat with the rheumatic fever, which was unusual enough for me to be wheeled down to a lecture theatre while in hospital to answer questions from medical students.
oh wow you went through alot hun glad you had your valve replaced. Yeah medical students are fascinated by me aswell when I was in hospital for two weeks i had so many medical students coming to me was cool and weird at same time x how did they know you had rheumatic fever??. I had my aortic stenosis fixed when I was 13 well temporary fix obviously cause now it's severe aortic regurgitation and moderate stenosis. X
Cardiac surgeon diagnosed it. I do have a history of this illness in the family, my grandfather had it twice (second time when he was 72) which is highly unusual My mother was also the secretary to the Matron at another hospital at the time so they would have looked after me if my GP had not been on the ball. Bedrest there would have meant six months literally flat on my back, while I got away with 10 weeks in bed but able to sit up. Was on Penicillin for eight years as a precaution until I was 21, so pretty sure it is a very safe and effective treatment provided you are not allergic to it.
Scared witless! A paraglider and a RAF pilot, wow.
I say that not being flippant because those 2 things would seriously scare me, just goes to show we are all different. I suppose it is the training that removes 'the fear of the unknown' for those things.
And in a way it leads to your current situation, something which is new and a unknown experience to you. All I can say is that you are in good hands with very well trained people who will do there best and look after you (a bit like those passengers who flew with you).
Ha! Yes, it sounds a bit feeble maybe, but the big difference is I've always been in control (or so I liked to think!). And yes, spot on about the fear of the unknown. The Parachute Training School at one of the RAF bases I worked at had the motto: 'Knowledge Dispels Fear'. Very true.
And you're assuming I wasn't scared witless when flying an airliner or a paraglider...most of the time was ok, but occasionally...!š
I like the moto. Trouble is sometimes too much knowledge? You have been through alot and you are so brave. And your training will help you but I have to admit when you find out something is wrong with your heart it does make you think. My condition is very different and you can read my bio. But I think like you said when you have always been in control it becomes a shock to suddenly not too be in control. You can control certain aspects and if you have a strong mental attitude then this will help greatly. But it is a shock and iam still going through the exceptance and grief side of the diagnosis. But i suppose we can try and look at it as new adventure. Or should I say a new experience that can make us stronger. Good luck.
Hi Chris and welcome
I'm a newbie here too and also joined the FB groups after a shock diagnosis in August, awaiting imminent valve surgery for bicuspid aortic severe stenosis, only taken them 67 yrs to diagnose lol blaming all symptoms previously on diabetes age weight la la la little did they realise....
it's an anxious time this waiting game but considering what you've been through previously this should be a great success for you
There's a lot of us in this "club" far more than I realised but they are great at sharing out the virtual hugs !!
Hi Chris, welcome onboard! I am quite new here as well. For me I am not sure regarding regurgitation Iāve seen mild on my echocardiogram report but cardiologist never mention anything about it. It all started when I went for heart screening few months ago that leads to angioplasty and stenting. Celebrate my 35th birthday with a stent š
Iām an airline pilot too (grounded š«£) .it is life changing experience and I believe this forum is helping me to go through every stage. People are really helpful here.
hope for the best on your ct scan today. All the best and keep us updated
Nearest I've come to that is falling off my ladder š.
I hope everything goes well with your surgery. Although it may seem like a big thing, remember these surgeons do this operation every day. It is routine to them.
hi Christhat all sounds like your having a hard time . I wish you a speedy recovery I have little knowledge of your condition but you have done the right thing joining this chat group there is always someone with a good and sensitive answer .and like you said its good to share, you can have all the support in the world but when you are laying awake in the night with a heart that has its own mind,it can be a scary place,I think everyone on this site has been there and understand the anxiety that goes with it .let's all keep strong best wishes and keep us informed šā¤ļø
Crikey youāve certainly been through the mill. Good job you persevered and weāre aware something wasnāt right . Hope you make a speedy recovery after the op x
Iām on the forum for my husband. He too was a thrill seeker, like yourself. He was stopped first by ending up in hospital with back trouble (no operation though) and then a few years ago a quintuple bypass. He said the bypass operation was better than his back pain, so hopefully after what youāve been through with your accident you will find the valve operation ok. Wishing you all the best.
Not quite to your level but I got taken to hospital for sepsis. Had a bad back then felt really weird one night high pulse whilst not doing anything. Paramedic said BP dangerously low, infection oh and he could hear a heart murmur. As well as sepsis (infection was in my back, lung,heart and spine) turned out I had a bicuspid aortic valve that had narrowed and needed replacing. If I hadn't gone in with sepsis who knows how long it would have taken to get diagnosed.
Hi Chris, |If you have a heart valve replacement you'll be fine. You are young and fit. Two years ago at the age of 75 I had a heart valve replacement and a quadruple bypass. I had a dizzy bout Easter 2021.Nov'21 had my operation . I couldn't believe I needed the operation. The months leading up to my operation I felt as fit a fiddle. We have a large garden which needs a lot of attention. I love walking and a enjoy going on my ebike. If you need the operation, just get it done. Don't worry about it. I'm in Fuerteventura at the moment, it hasn't stop me from going away. Be strong minded. Keep smiling.
Hi Chris and welcome to the forum. So many of us on here have had that 'shock' diagnosis, including myself. Mine wasn't Aortic but severe mitral and tricuspid valve regurgitation. I also know the feeling of recovering from a broken back.....14 years ago...2 smashed vertebrae with compressions on the spine. I couldn't have the operation to repair the vertebrae as they were too unstable so had to lie virtually motionless in my hospital bed for 7 weeks and then was in a torso brace for 3 months. I think my determination and resolve throughout that period also helped me through this health scare. My heart diagnosis 2 years ago was a much bigger shock than my broken back and as many will tell you, coming to terms with it all is difficult to deal with.....but many will also tell you that the thought of everything, especially the operations, is just so scary. You are obviously a person who can keep themselves calm in situations purely from having been a pilot and hang gliding so try to keep that same sense of calm about your op. I'm not saying that lightly but you will be in the best of hands having an operation that is quite common with an excellent recovery record. Once you are in hospital you will be in the hands of an expert team of people who will guide you through everything. Your recovery out of hospital is a lot to do with you and your determination and again, because of your past experience, you will be focussed on the job to be done. It's not a walk in the park but a lot of people on the forum will also tell you that the surgery and recovery isn't as bad as they initially thought. You can get back to leading as full and active a life after, following direction and advice from the experts and of course, can then stay on the forum to be able to take the fear out of everything for others who are newly diagnosed with a valve failure šš. You will be fine Chris and I wish you all the best and look forward to your updates x
Good morning Chris and welcome to the forum. Sadly we hear this story all too often now of people who have been doing all the right things and then suddenly had problems. I was never really fit since the age of 20 after playing football. And driving for a living doing 12 plus hours a day left just enough time to sleep before the next day. I had a sudden cough and sore throat and a bit breathless and found out I had severe copd and needed a pacemaker for a slow heart rate. You sound like you are doing well and on the road to recovery. Hope you keep well in the future. Brian
Similar story in terms of heart issues, Iām 71, fine until a year ago. Went to A&E with extreme breathlessness and chest pains. Told they could find nothing wrong. Same with a follow up appointment a week later.
Noticed diastolic bp was around 60 but doctor not concerned. I didnāt know but hospital had booked an echo for me which I had mid May. Troponin levels were elevated and I was kept in and sent for PCI. I was told Iād had a heart attack in the previous week.
Another echo prior to discharge and Iām told Iāve got severe aortic valve regurgitation. Kept in for another 3 weeks and undergo AVR and CABG on one artery not stented. Some nerves but thought of the alternative of an early appointment with the Grim Reaper.
21 weeks later and I feel good, jogging 5k a couple of times a week, swimming and generally enjoying life again. A year ago I could manage about 250 yards and then had to stop to regain my breath/energy.
One thing to reconcile yourself to is an ongoing regime of medication. Iāve got a bovine valve, Iām on 9 tablets a day, 2 of those stop in June and are a blood thinner. I take an aspirin daily too. The rest will probably be for life but I do have high bp to deal with. A couple are to keep my cholesterol down, another to keep heart rate down and the rest to look after my bp and stomach as stomach issues can result from the drugs cocktail.
Oh, something else Iāve not seen mentioned, I was recommended to switch from wet shaving to electric as any little nick bleeds copiously.
Hi Chris my problems are different from yours. But similar in waking up one morning to discover major heart problems. Heres is my story.
Hi I took ill on 2nd July 2023 with Oxygen levels of 82% so was admitted in hospital for Respiratory investigation and discharged after a few days once normal Oxygen levels. 2 weeks later I noticed my heart dropping to between 29 on raising to 110 so went back to A and E where they arranged the 24hours holter which they suggested very mild VE /STV fast forward to 14th September 2023 I had an Echocadiogram. Then the 15th The heart Failure nurse called me to go to the hospital and see her immediately. Where she broke the devastating news that I have severe Heart Failure Grade 3 Diastolic dysfunction. And dilated left ventricular cavity size and and impaired left ventricular function with global hopokinesia The LVEF was 20% to25%. All though devastating it was also a relief as up until now I was made to feel it was my imagination. I am due to have Angioplasty investigation to find out how my Heart became so damaged, usually this level of damage is due to severe Heart Attack. But blood tests don't show any heart attacks I have just turned 49 in September.
Welcome to there club no one wants to be in. Glad your accident was not worse (we have helped collect paraglider from MamTor who have forgotten to clip in etc!). My bolt out of the blue was a diagnosis of a hole in my heart in 2020! I had been an active hill team member of a mountain rescue team (hence the Man Tor incidents), a badminton player, dig groupie etc for years until I was breathless pushing barrows up slopes. I thought it might have been my age (69) but on a check up it was found to be an Atrial Septal hole which I had from birth! I was sent to the Liverpool Heart and Chest hospital as my hole had strings etc across it, and they repaired it for me with hand woven, titanium devices (needed 2) made in Sweden - none of this AliExpress stuff from the far East! They did the patches via both veins in my groins. I went from having problems with 400m on slopes to doing 6 km in the Derbyshire Dales in 3 weeks - I had my life back Good luck
Warm sympathy. You must try and cheer up. Valve replacement has become nearly routine, so maybe you are more anxious than you should be. In any case, get well and take care.
That Wednesday evening back in May when I received that bailiffs letter saying when they were coming in to evict at the end of the month part of me was glad to know where I stood but the other part of me was terrified and I had palpitations through stress but they have gone away now that has been sorted!
I thank my lucky stars that I wasn't made to wait for months on end to receive that bailiffs letter saying when they were coming in to evict like some poor people have had to do!
Hello and welcome to the group!I've found so much advice and support in this forum I really hope you do too!I'm here because of my husband,he had a heart attack, completely out of the blue,on Boxing Day last year.Always been active,played Sunday league football until he was 50,not overweight and a non smoker but sadly heart problems are in his family we may be should have expected it but always assumed it would be someone else!
It's been a slow recovery,but he is recovering,back to working full time and doing really well.
This forum has been brilliant,for me, especially in the first few days ,when I was too scared to sleep in case it happened again or his heart suddenly stopped....it wasn't going to but you have some vivid thoughts early on.
Anyway,post whenever you need to someone is always here.
You've had a tough time recently but now you've uncovered your heart problem you have taken the first steps to recovery, it might be a long journey but you'll get thereIt's not uncommon for these things to suddenly reveal themselves. I was also fit until my late 50s, very keen hill walker. I suddenly started getting breathless on little effort and for a year was told it was long covid. Eventually I asked if it could be angina and my GP referred me to the rapid chest pain clinic. 5 days later I was admitted to hospital for an angiogram and it was found I needed a triple CABG (coronary artery bypass graft)
Now 18 months post surgery still have some problems but getting better gradually
. Hello Chris, What a brilliant career you've had.! And now to find yourself in this situation after the unfortunate accident in your paraglider and your remarkable recovery. You can get over anything.
I had a triple bypass in 2022, open heart surgery, and in 2012 I had an Abbdonable aortic aneurism (open surgery).
I recovered from all of the above , I have a moderate leaking heart valve and high blood pressure which I am being treated for.
I am still pretty fit for my age, and play golf at least once a week all year round. I'm am in my 90th year.
Hi Chris life is very good at throwing those curved ball at us.
I was also fit and very active for a 73 year young cyclist, hiker scuba diver. Then whilst out on a 20 mile off road ride apparently i had three heart attacks. I put it down to acid reflux as it was just a silly little ache in my back. Long story short spent 7 weeks in hospital feeling fit and healthy walking up and down the corridor getting in my 10,000 steps "like you do". Triple bypass October last year. Landscaped my garden April/May this year still feeling fit and healthy. Climbing stairs and inclines started to make me a tad breathless. Low and behold now diagnosed with heart failure. What the!!!!!! Still going strong Ish lots of meds but I am still here to tell the tale.
Good luck with the operation they work wonders now a days
Chris, an incredible testimony of someone who lives life to the full! After all you have gone through, valve replacement should be a walk in the park! Being fit and having a positive attitude is very helpful, but the heart is mechanical, the replacement valves work as well as any mechanical part you would replace in your car, and while I have never piloted a plain or engaged in any activity as exciting as you have, my replacement valve did not stop me from being passed fit for safety critical roles. Your days of exciting adventures are not over by any means.
I was going to learn paragliding but then I got ill with various things and finally, in July uncontrolled angina when I had a stent inserted. When I recover, and it's going quite slow for me, I was planning to investigating paragliding again. After reading this I may do a bit more research into the risks.
On the other hand, you only live once.
My blood pressure is all over the place since the stent was inserted and I probably need to get a doctor to investigate.
Please don't be too concerned about my paragliding crash! As I said, that was my first event in 19 years, so a pretty good record. If you want to have a go without all the 'excitement' of being solo pilot can I suggest having a tandem flight first? Depending where you are in the country I've got lots of friends who do them so could recommend someone maybe. It's a great way of experiencing the sport and even taking the controls if you want to.
I lost my first wife to cancer when she was only 38; since then I've totally followed the 'you only live once' mantra and not putting off things to 'one day' as that day might never come. Hence retiring early from a well-paid but boring job (autopilots do most of the work these days) and doing what I really wanted to do with my life.
Re BP, I believe too many doctors are only interested in the top number - the systolic pressure (mine's fine!), rather than taking the diastolic into account as well as the pulse pressure, the difference between the two numbers. I'm no doctor and they are the professionals, but after my GP completely ignored my requests even for a BP check (he has never met me in the flesh, only telephone consultations!) I would suggest you push to get yours checked properly, ideally by a cardiologist.
After ending up in A&E AGAIN (I have been so often over the last 4 months, I know the place really well) after speaking to a call handler from 111 I finally got a date with a cardiologist for a week on Wednesday. The nice doctor I saw after my 4 and a half hour wait arranged it for me.
I had the stent put in and it prob saved my life but I have not been right ever since. I am working on getting my stamina and strength back but I keep feeling faint at random times and it lasts a couple of hours each time. My BP goes up and down like a yo yo and each time it does I feel faint and my BP monitor is showing irregular heart beats. I have got over worrying if I am going to have a heart attack but as a self employed gardener it means returning to work is almost impossible and I certainly don't think paraglyding, even as a tandem would be sensible at the moment. However if this ever resolves and I manage to get back to work I will look into it.
Hi folks, me again! š Can I just say a huge thank you for all your responses to my initial post only 2 days ago. You're all amazing! Such inspiring and encouraging messages. What's nice is that you're all pretty much saying the same thing: the build-up to the op is the worst bit, the op is relatively routine, you'll be fine, they do this day in day out, relax! There's no getting away from the fact that it's a big op, but your responses all make perfect sense. I do trust the experts and am just so grateful that my issue has finally been taken seriously and I'm on track for treatment. Thanks for all the hugs - returned (carefully!). xx
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