hellooo, I am 25 years old and due to have valve replacement surgery at some point (not sure when, just waiting for the right time) I have Truncus Arteriosus and had valve replacement surgery when I was a baby but haven’t needed one just yet since.
My question is…
I am currently always tired. Not like tired out of breath etc but sleepy. I am always sleepy and knackered. It’s been like this for a while and I am just wondering if this will change once I have my valve replacement surgery? Will I feel more “alive” I guess?
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Laraa473
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Feeling tired is a very common problem many heart patients experience.
I have used to work 24 hour on calls, nights and have had 3 children. The tiredness I feel as a heart patient surpasses the tiredness I felt from all of the above.
There are several forum members who have a lived experience of valve disease and congenital heart disease. Hopefully they will be along soon to share their experiences with you soon.
In the meantime are you aware of the Sommerville Foundation they are a charity who support young people and adults born with heart problems.
Aw hi so nice to meet someone same age as me needing a valve replacement I'm 25 gona be 26 in October. I will need valve replacement surgery eventually I have congenital heart disease bicuspid aortic valve severe aortic regurgitation and moderate stenosis, Ventricular septal defect and ventricular Tachycardia. Wow I've never heard of this heart defect before. I also get really tired I just thought it was normal because I am a carer and go to the gym and do alot of walking. What symptoms you been having?. When have they said you need it? x sorry for all the questions 😅. Anway wish you all best and feel free to message me if you want. Very warm welcome to the forum! ❤️😁
hellooo, so I’m not currently having any other symptoms that are pointing towards needing surgery too soon, I’m actually not due for another heart check up until next year which is great, but I will need surgery to replace my valve at some point as it’s leaking. I’m quite active and also do a lot of walking/gym. I just find myself feeling knackered most days, I have to nap after work because I struggle otherwise. X
Wow sounds so similar to me x 😅 were like twins! I go to the gym well try to go every two days my consultant said to go for about 45 minutes to an hour most I've managed is 50 minutes, and I can't do any weightlifting of any kind. So I do cardio exercise like exercise bike and treadmill. I will need surgery eventually aswell because mine is severe leaky and moderately narrow . Sounds like your very tired what job do you do? X I think I would benefit from napping but i sleep till about mid day so not necessary In my case!
Aww be careful hun x yeah I do alot of walking and just got back from the gym I did an hour! I'm knackered felt well dizzy after and then walked to the shops aswell so tired X. I used to have a job like that nearly killed me! I was very silly though I didn't tell manager that I had a heart condition not until I had to tell her I was in hospital! I was made redundant from my job but probably was for the best cause it was killing me 😭.
I think feeling sleepy and Fatigue is a pretty common symptom for many people before they get all sorts of heart operations done , your body is running on half steam.My tip is that it can be a good idea pre surgery to ask your GP to do some standard blood tests just to check that there isn't a low nutrient level adding to your Fatigue (even if you have a good diet) especially if you haven't had them done in the last 3-6 months.
You can request a full blood count, Vitamin B12, Folates, Ferritin , Vitamin D , a kidney function ( electrolytes) , liver function and Magnesium . They are happy to do them if you explain you are being proactive and just want a baseline to work from to help in your recovery.
Then, if any of these are low or there is a deficiency your GP can prescribe or recommend a supplement to help improve them before your operation. If you do a little preparation before I've found that the recovery is a little easier and less tiring afterwards.
The weather is pretty warm at the moment so that won't help , are you keeping well hydrated as that can cause more sleepiness too.
Hopefully more people we reply soon with more specific help and experience of valve replacement specifically.
Good luck with the operation and please post again with an update to let us know how things went.
Hi.I joined the group after i had a heart attack myself but posts like your's interest me too as my 15 year old son was born with a bicuspid aortic valve. His now has severe regurgatation and waiting on another mri and stress test. He is constantly tired and could sleep the lock round although sometimes its hard to tell if thats from his heart or him just being a typical teenager lol
Hi I have had a aortic valve replacement though I am lots older than you 75 to be truthful but still very active The tiredness is to be expected and it is the worst tiredness you can imagine As my doc said You have nowhere near enough oxegen going around your body what do you expect and you shouldn't be doing much of anything
Once you are recovered your energy will be back and you will be able to get out there and enjoy your life
I suggest you join a Facebook group
UK aortic and heart defects pre and post surgery a brilliant group with so much knowledge and reassurance that your symptoms are what to expect and lots of younger people on it I have found it brilliant
BHF also have a group called One Beat for 18 to 30 year olds
With heart valve problems, tiredness is unseen and creeps up on you. I had years of tiredness before my heart valve problem was discovered. I had aortic valve replacement four weeks ago and my strength is coming back. I am super optimistic that I will be back to running, mountain biking, windsurfing and skiing! Better than before! I am 60 and feel blessed to have another chance.
Welcome to the group. I had my aortic valve replacement when I was 32 and healthy other than a valve damaged by rheumatic fever when I was 13. My valve was replaced before I had any symptoms of fatigue or any further damage, but once the effects of the anaesthetic wore off I had a lot more energy and apparently was making all the other patients feel tired (and possibly some of the nurses too). Once your leak is fixed, blood flow round the body will be improved so your heart will not have to work so hard. From my limited experience I think you will feel more alert and less tired. I approached the whole procedure by telling myself that this was similar to taking my car in to replace a defective part that was slowing it down, that, and my faith in God, saw me through the op and onto 35 years (and counting) of full and active life.
I had bacterial endocarditis at 15 which damaged my Mitral valve quite badly. I had the valve replaced at 17 and I can honestly say it improved my life 100%. I hadn't realised just how compromised my life had been, I felt properly "alive" after surgery and it was amazing. You should feel so much better afterwards 👍
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