He’s had to valvuloplasties one when he was 12 and the other when he was 16. The latter left his valve leaking but he’s been ok. Now he’s 34 and we have just heard he has to have the valve replaced with an onyx mechanical valve.
This has to be done in the new year . His valve has deteriorated quite badly . An MRIscan in March 2020 showed this. deterioration but covid hit and no one contacted us.
Now he has to have an onyx mechanical valve fitted . I’m terrified! He’s only 34 and now facing open heart surgery. I’m terrified of the surgery and terrified it won’t happen with covid.
Can anyone who’s had this done contact me please . He’s my boy and I’m so worried
Thank you
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Mariawatters
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I'm similar to your son, in that I was diagnosed very young.
I had my first AVR at 33years old and I'm now 60, so they must be doing something right. I took the option of a Tissue Valve knowing I'd have further surgery in the future, which I had many years later, so I now have Mech AV & MVs fitted in my early 50s.
With a mech valve straightaway, hopefully the OHS will be a one time experience for your son.
It's easy for me to say, but, surgery isn't anywhere near as bad as people think. That said, my wife would tell you otherwise, with how much she's worried about me over the years.
The main thing is that he's been diagnosed and can be "repaired" and hopefully look back in later years as something for the good, as believe me the surgery is literally a life changer in so many ways.
Thank you for taking the time out to reply to me. He is absolutely terrified . He has had a bad few years with having a bad back due to his occupation as a drummer . Then covid hit so he couldn’t work for another year . His mental health has been so bad ….He was just getting on his feet and getting back to doing what he loved doing and now he has to have OHS .He is exhausted all the time so hopefully the surgery gets done and he feels good after it.
As a parent it is so hard to watch and there is nothing I can do . I don’t know how to reassure him . I worry about him all the time . Thank you fir your reassurance and I will pas this info on to him
I had my Aortic valve replaced and bypass done 5 years ago. I was double your sons age, I know it’s a very scary place you are looking into but please believe me it nothing like your imagination is making it. Yes it’s a major operation but one that is done so regularly. Your son will be so well looked after. Tell him to follow all the instructions no arms above his head no lifting anything heavier than half a kettle of water no pushing or pulling movements. He as to let his sternum heal. He will be given breathing exercises to do he needs to keep doing them at home. When we are on bypass our lungs collapse so they need a bit of extra work to get all those little pockets filled out again.
Once this new valve is in his life will be back on track, I am so much older than he is but every day I am so grateful to the medical team that gave me my life back.
Best wishes to you and your son he will soon be on the heart mended road.
I was born with valve issues. Monitored from birth. Surgery (open heart) at 16 and am 42 today. After 25 years my metal valve is being looked at and may need to be replaced, but I am here and still active. Take warfarin daily.
No. went skiing at school and, despite being now a fat middle age man, still try to play 5 A-Side football. I need to lose weight but walk and play badminton and swim. Travelled a bit too xxx
At Uni drunk quite a bot (not advised with warfarin) but survived. Put myself in hospital once when 21 with internal bleed in leg, but my fault and also that I took wrong paracetamol!
I know this is a worry for both you and your son, but these days these operations are routine. The best thing is that it will be an "elective", i.e. planned, operation. The surgeons hands we put ourselves into are incredibly skilled and they take a great pride in what they do. Age is also on his side. He will be fine.
I had my own Aortic Valve replaced by a mechanical one as part of emergency surgery for an aortic dissection, at age 62. It's been fine, and I met a couple of lads roughly the same age as your son during my cardiac rehab classes, ome of whom was very fit and active before. The improvement we saw in him over the 8 week sessions was remarkable, and he felt pretty much back to normal.
Whilst there is an inevitable requirement for him to go on warfarin afterwards, this soon becomes second nature to keep the INR controlled, and these days you can do it at home. NICE even have recommendations for this.
My own son is a drummer, so I know how physical that can get. Yours will lack some energy to start with, but should get back to an adequate state of fitness fairly quickly. Yes, it's physical, but it's not as physical as say running a long way. His current state sounds untenable for such an occupation.
He might benefit anyway from learning the most efficient ways of using his body. My son also has had back problems but with an all-round strengthening, core exercises, etc., he has been a lot better. One really good option is to get Alexander Technique lessons, where you learn how to use the body well. (These will also improve his playing). They aren't cheap but in my view worth it - I took these for "only" a desk job and it has helped all my life.
Thank you Cliff …. I’m just coming to terms with it all. He is so frightened and I’m dreading the day as I dint know how I’m going to put the hours in while he’s going through it . He had two procedures done when he was very young and that was scary more so for him obviously. He’s starting to remember a lot about those even tho we hardly ever looked back or talked about it .. . I trust in God he will be ok , he just has to be . I have a rare terminal brain disease myself …CBD …and I’m just so grateful I’m still here and fairly able to do most things . I’ll be here to help him through it all so I’m taking this as a positive !
Really good advice cliff, age is definitely a plus factor in post surgery recovery he will be fine and in 12 months time it will seem like it didn't happen at all. Good luck.
Hi Mariawarrers
You sound strung up with worry over your lovely drummer boy. I have a thirty something drummer boy son too. Four years ago he had mental health problems which thankfully now are under control by him. He worked hard on his recovery. He loves playing as I’m sure your son does, and it’s helped him tremendously. He’s played in bands since his college days.
OHS has its restrictions to start with and obviously drumming will have to wait for a few weeks. I had an AVR in January. I’m 68 now and my recovery has taken longer than your young sons will. He will have to stick by the rules of recovery with arms not to be lifted above his head or jarring movements. He will be back on those drums when he can and it’s safe to do so and it will help his strength and his mental health.
Tell him from us to hang on in there. It’s a long road but a good one. He will lead a more normal life with a very strong sternum and a repaired heart. In recovery he can also do gentle appropriate strengthening exercises for his back. NHS online - you can print them out for him. As he recovers he can do more. Get the cardiac rehabilitation nurses involved in that too. He will get referred to them after surgery automatically.
Take care of yourself . Our roles are reversed. My son was the one worried for me!
Thank you Maisie .. we have had a year of it . My younger son was very ill with covid and we almost lost him on sept 2nd . It was hard to believe because he was our healthy son ! Thank God with the amazing care in The Mater hospital Belfast he came through it. Then my husband was diagnosed with an AAA apparently very common in men in their 60s so he is being carefully monitored. I myself have CBD a rare brain disease so I’m losing mobility on my left side but I’m a fighter and won’t let it take me from my boys and my grandchildren plus my heart warrior needs me. Watching your child go through anything is horrendous especially the mental health . The drumming and his music helps him through it . I don’t know how he’s going to deal with the recovery but we just have to get through it. I have left work for good now to devote all my time on him. I hope your feeling better yourself and I hope your drummer boy stays on the bright side of life ❤️
Words fail me. You have gone through so much and are still going through it.
Usually on here we fear for ourselves or our significant other or a family member or child etc . I cannot comprehend what your family is having to cope with.
Please stay on here and use the forum for support, information or just a chat. I feel for you and hold your hand. Thank you for asking, I’m fine.
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