Son has mitral valve regurgitation

[RoseC88]

When I was pregnant with my older son he had pulmonary sequestration which pushed his heart to the right. 2 months after he was born he had surgery on his lungs and then continued to see his cardiologist. At first his heart was enlarged on one side and they couldn't figure out why. Everything worked the way it was supposed to and was where it should be, it was just bigger. Well that went away along with his heart murmur and hole but then after a few years they said he has mitral valve regurgitation. They said they weren't sure at the time if it was dangerous or not but would see him every other year. Over the past year or so he's been saying his chest will hurt, that he's suddenly out of breath, his heart feels like it's hurting and that he can feel it beating fast and hard even if he's just relaxing. He is now 10 years old and sees his cardiologist next week. I'm just wondering if anyone else has maybe had these same symptoms and if I should be worried at all? I appreciate any feed back

[Lure2]

Hi, I am sorry for your 10 year old son with mitral valve regurgitation.

I must ask you though if you yourself have Hughes Syndrome/APS and therefor believes your son also have got your illness as it can run in families?

Here we all have Hughes Syndrome with too thick blood and as we are not even medical trained we are sorry but we can not give you any advice.

I can only say that I personally have as a symptom of Hughes Syndrome, Pulmonary Hypertension with Tricupspidvalve-insuffiency and I have been told to tell my Cardiologist when I am breathless. I am today 72 and have this illness. He is young and without this illness and the Doctors are today fantastic but I think you should absolutely tell the Cardiologist about his breathlessness and also that his heart is hurting.

Good Luck from Kerstin in Stockholm

[RoseC88 in reply to Lure2]

Yes my dad had APS and I also need to have my heart checked when I have time. I do plan on telling his cardiologist his symptoms, I guess I'm just kind of nervous and since I don't know anyone with the same problem, I figured I'd ask on here and see if it's something to worry about or not. But I'm hoping for the best and thank you anyways ☺

[Lure2 in reply to RoseC88]

Hi Rose,

I did not know that you had APS in your family. I think you should stay on our site here where we have very competent and friendly and nice people.

I do not know where you live but I think you both should get in contact with a Specialist of autoimmun illnesses. Hope it is not very difficult to find that Doctor where you live but it is very important as your father had APS and we now know it runs i families. This illness is rather new (1983) and few doctors understand it. Even if you do not test positive to APS now you may get the illness later on. You mention your own heart should be chequed so perhaps you have got some issues yourself.

The key to this illness is anticoagulation as we have to thick blood and the blood has to be tested twice with 3 bloodtests 12 weeks apart to have a diagnose of Hughes Syndrome/APS. I did not get my illness until I was around or a little under 50 years of age.

You should not go around with high bloodpressure! Very important with heartissues.

Today I am properly anticoagulated and the Cardiologist I met yesterday when I did an Ecocardiograpy on heart/lung on the Karolinska hospital in Stockholm, asked which INR I stayed on and I told him I was on an INR of 4.0 and that high INR he was very satisfied with. He understood what APS was and that you can get micro-clots even in your heart.

It is very good that this illness can be treated but it is important to have it done as soon as possible before you get clots and DVTS and PEs and they make damage to your organs.

Hope I have not frightened you now, but I have learnt on this site for several years, that it is exstremely important to find the right Doctor and to be anticoagulated.

I think it is a good idea that you talk with the Cardiolog first. Your son can be happy to have you as a mother who will take the responsibility for him as he is a bit too young to know for himself.

Good luck and please stay with us and let us hear how it goes for you.

Kerstin

[RoseC88 in reply to Lure2]

Thank you! I was never sure what APS was. I just knew my dad had it along with cystic fibrosis which killed him, liver disease and back problems. I tried to see a Dr I had at the time for my heart but she was no help at all. I've also had back problems for 17 years now and found out a few months ago I have the start of liver disease. I still haven't got checked for cystic fibrosis but I know I need to since I have a lot of the same problems he did. I live in a small town in Wisconsin so I'm not sure where I can find that kind of Dr but I will definitely look into it. I read a little online about my sons heart and it says surgery is an option sometimes but I'm not sure how I feel about that. Hopefully at his appointment they will say it's nothing serious but I will definitely make an update! ☺

[MaryF Administrator in reply to RoseC88]

Hi and welcome, we have quite a few from the USA on here, I am sure they will give you more localised advice. MaryF

[Lure2]

Hi Rose,

You could put a question on our site if there is a Specialist near Wisconsin. I am sure our members will try to help you.

I also hope you will have the time to cheque your own heart!

I do hope for yourself and especially for your son you take the Hughes Syndrome/APS very seriously as it is a very tricky illness and the antibodies can attack every organ in the body and it must be a stop to it and that is - ANTICOAGULATION !

I do not say that you have got the illness but from what you have told me it could be like that.

The best thing for us is when we are diagnosed and find a Specialist who knows how to treat us as it is treatable. I did not know there was anything wrong with my heart and lung but I had very high bloodpressure and some pain and probably I must have had PEs even if I have not noticed them. You see some of us have microclots and they are not seen on a Scan. I went several years without anticoagulation and that situation I will not should happen to anyone else.

IF you find that you have got APS (hope you try to find out) do not let a Doctor without knowledge of Hughes Syndrome decide what to do about your sons heart before you have consulted with a Cardiologist that knows Hughes Syndrome and connected heart-issues.

Kerstin