My son had a full echo scan

[shellyuk]

Good morning all hope your well I was looking for some advice . My son he's 24 had a full echo scan due to him feeling dizzy passing out and feeling he can't breathe. So it turns out he's got a condition that's causing him to have low BP. So moving to the scan thay found he only has 2 flaps in his heart but ment to have 3 ? this will cause me issues later they say . This has confused me and him they found he has a leaking valve also .

[Slow-56k]

Good Morning,

I also have a bicuspid heart valve which was only picked up through a private medical, which was a shock, and I'm 56 years old. I have no symptoms, but I also have stenosis of the valve, which means it is narrowing, and at some point, I will need surgery. I'm presuming your son does not have this, so it is likely they will keep an eye on him, and he will likely have an echo every year, so if anything else develops, it will be picked up quickly, but he also may lead his whole life without the need of intervention.

With regards to the leak, virtually everyone's heart leaks, but this will be down to by how much and may not be an issue.

Also, things move on quickly, and there will be advances in this area, so if the need for intervention is needed, it may be different to what is available today.

You and he will read lots, and in the first few months, he will feel he has all the symptoms you have read, but this will ease with time, and hopefully, he and you will be able to keep enjoying life.

Best Wishes.

[BowlerA1]

Hi Shellyuk. I was diagnosed with a bicuspid valve when I was 60. That means I have only two flaps and not three. The trouble with this problem is that the valve tends to fur up quicker than normal valves. I eventually needed surgery when I was 65.

They may treat him with medication and the sooner they let him know the sooner he can prepare himself for his future.

It is a worrying time but he is in safe hands

[jersey-jazz in reply to BowlerA1]

Which valve was replaced?

[BowlerA1 in reply to jersey-jazz]

Hi. My Aorta valve was replaced which had stenosis or furring up. I had mine replaced with an animal valve. I had mine done at The John Radcliffe Hospital in Oxford.

All the best

[jersey-jazz in reply to BowlerA1]

Thank you for answering. When did you have it done and how are you doing now?

[BowlerA1]

Hi I had my valve replacement in April. I am doing well. I am still taking medications for anti platelets which I will take till next April. I also take blood thinners so that my valve works efficiently. I am eternally grateful to the surgeons, doctors and nurses of the NHS who have given me a new lease of life.

[jersey-jazz in reply to BowlerA1]

Hi Bowler

I hope you hd a good holiday season and that the replacement gives you a new lease on life in 2023! I am asking you all these questions because a week from today, I meet with the doctor(s) and medical staff at Columbia Presbyterian to confer. They will decide, officially, if I am eligible for the new aortic valve procedure and if so, when. Did you have the new procedure where they drop a pig valve in on top of the old diseased valve, force the old one open and somehow secure the pig valve in? You say the you are doing well. Good for you! Are you up to speed, yet? I am really upset about the pig valve possibility replacing my inner heart. (I somehow believe that the heart is sentient as well as the brain.). My friend says that I should thank the little piggy. Then, I think," Will they get the right size pig? How do they get it? What do they do with the rest of the pig?,What other bits and pieces do they put in there to hold the pig part in place? How long will it be before I can do my normal things?". At my old age, I still drive my motorhome and car and travel internationally, most often, solo.

[BowlerA1]

Hi Jersey-Jazz

Happy new year to you. I am assuming that as you need a valve replacement you are feeling tired and lacking in energy. When your valve is replaced you will have more energy and a new lease of life. You ask some interesting questions about the pig valve. My operation was a little unusual in that my first valve did not fit properly and so a second valve was fitted. Also my operation was an emergency operation because I had collapsed at home and was taken to hospital. I did not really look into the operation beforehand but just trusted the National Health Service with my care. The surgeons were remarkable and I am eternally grateful for what they did for me. I don’t think they actually use a pig valve direct from an animal. I believe the valves are grown in a laboratory. Either way I again am grateful to the scientists and the animals that have made this wonderful operation possible.

I wish you well and soon you will have all the answers you need to proceed with confidence.

[jersey-jazz in reply to BowlerA1]

Dear BowlerA1----Thank you for answering quickly and giving support. That is interesting about the pig part not fitting properly. That, of course, is one of my many concerns. Unlike you, I have time to think about it and to come up with some off the wall questions. Did you go through a lot of pain when they had to remove the ill fitting pig part and replace your now really damaged aortic valve with yet another one? Again, I am glad for you that you feel so good, now.

[jersey-jazz]

I lost the post I just wrote to you so I will try to recreate it.

Dear Bowler Happy new year to you too and thank you for the quick reply. I am trying to look past the operation and recovery and on to the return of energy and vitality. Yes, that is so interesting that the first pig valve did not fit and that was one of my concerns. Were you in a lot of pain and discomfort because of the ill fitting first pig valve? How did they discover that it did not fit? How long between the two pig valve operations? I am so glad that you are doing so well. Anything that you want to inform me about even though I have not asked that question, I would be grateful for. Thank you, again!

Frances

[BowlerA1]

Hi Jersey-Jazz. There was five days between my two operations. They knew it was a bad fit because it leaked. I was kept sedated for the whole time while they monitored me. When you are brought round there is pain from the chest if you have open heart surgery which you may or may not have depending on how they fit the valve. The nursing staff are excellent at keeping the pain to a minimum and the body heals remarkably quickly. One thing I found very comforting is that although this is an extremely important stage in your life for the surgeons and nurses this is an every day operation and poses no problems that they have not sorted hundreds of times before. I also discovered how common this procedure is and have new friends because of the shared experience.

[jersey-jazz]

Dear Bowler----Thank you for the quick replies. My aortic valve is called "diseased" and is not severe, yet but it seems as if the hospital wants to go ahead with the TAVR. That is me reading between the lines. So, I am going to start a new post and it will include much of what I have posted you already. I am so glad that you are mending so well. It is all such a big deal!