Any advice about Thomas.........

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EireCara

EireCara

Well-known member
Joined
Oct 22, 2006
Messages
1,307
Location
Kilkenny, Ireland.
Hello again,

While we were in England Thomas was seen by a cardiologist, and the 'short' version of what the cardio said is that Thomas' heart is working ''VERY HARD'' even at rest and while taking a beta blocker. His mitral, tricuspid and pulmonary valves all have 'mild' leakage. I know its ok to have some leakage but I thought that it should be just 'trivial' and not 'mild' ??

I am of course going to contact the cardio here in Ireland that we saw before leaving asap !!

Does ANYONE have any advice or opinions on this.
 
No advice but wishing you the best of luck that everything is alright for Thomas. Paula x
 
No advice either, Jacqui except that you should check it out with the cardio soon and wishing you both the best.
 
Not sure that I have any advice for u Jacqui. Can I ask what age thomas is?

I'm assuming that he is your son?? If so, I would have concerns as to why a cardiologist would put a young person on a beta blocker. Is it to reduce his HR or to lower his BP? If the latter, then I would have reservations about this, as it is an ace inhibitor can do the trick without any of the side effects.

P.S. I thought all you Killkenny Cats would be out celebrating after yesterday!! :p
 
Hi, The cardio put Thomas on a beta blocker to lower his hr because just before Christmas last year Thomas passed out due to a VERY FAST hr right in front of me.

Thomas is 16 years old since March. He doesnt smoke, drink, or take drugs...believe me I would know, and they tested him in the hospital that night.

Thank you for your reply......PS....I did watch the match yesterday with friends, which was fantastic. Just about every person in Kilkenny is out on the town welcoming the ''the cats'' home...why arent I...havent the energy and my irr hb is acting up big time today. But I will enjoy watching it on TV tonight.

Concerning Thomas.....any other advice welcomed, as we will probably be waiting 2 or 3 months for an appointment with a cardio.
 
Chloe has 2 leaky valves and the cardiologists here have rated the mitral one all sorts from mild to moderate to severe at different times leading up to surgery 2 years after it started (bearing in mind she had other bits connected to that defect - not just the leaky valve on its own).

Her tricuspid valve has been a 'mild leak' since her first surgery, so it's been mild for almost 8 years now! It doesn't cause her problems and carid's think it never will. She takes an ace inhibitor but that's more for preventative measures than anything else.

Just thought I'd let you know that in our case 'mild leakage' has lasted years and never had any noticable effects so its not necessarily a bad thing.

xxx
 
*Thank you Wayne.

** Two days ago a 10 year old boy died suddenly on his 1st day back at school. His heart just stopped and all attempts to revive him failed. And as if that wasnt bad enough yesterday a 16 year old boy died while doing PE on his 2nd day back at school. They couldnt save him either. This didnt happen in Kilkenny, but in Ireland (we are a small country, it only takes 5 hours to drive from top to bottom).

This type of news is awful and my heart breaks for the families involved, but it also scares me big time because of Thomas. Even if he runs ''down'' the stairs I can see his T.shirt moving because his heart is beating so HARD AND FAST. in fact it can be seen through 3 layers of clothes. WHY IS HIS HEART WORKING SO HARD......???????
 
Hi Jacqui,
I'm sorry that you guys are still waiting for answers. I'm not sure what the cardio means by working hard. What is his heart rate and bp? Do you check it often?
Forgive me if you already told me all of this, but what tests did the doc do?

I really hope that things work out better now that you are back in Ireland.
 
That's true about a 10/11 year old boy in N' Ireland also, Jacqui. He was at a Gaelic Football training session with his local club (Drumquin) in County Tyrone, when he collapsed. There was a defibilator there and medical people were at the scene also. He couldn't be revived at all and died at the scene.

All the local clubs in this county have de-fibs ever since the high profile death of Tyrone captain (& International Rules Star) Cormac McAnallen. He was 24 when he died, almost 3 years ago. His condition turned out to be Hypertrophic Cardiomiopathy, the most common cause of SADS.

I don't know if you watch the Late Late show or not? But the night of Cormac's month mind, his mother and girlfriend at the time travelled down to be on the show to talk about the importance of de-fibs and screening of sports people. It was very emotional.

I was in the audience, and was interviewed by Pat Kenny about the strange circumstances that uncovered my BAVD. I had played against Cormac many times also.

There was a website set up to raise money/awareness, that people may want to take a look at. It is really worth looking at:

http://www.thecormactrust.com/
 
Hi Deanne, Im not sure what Thomas' bp is on a daily basis or when he is active (which means just walking these days....at least that im aware of ) and I have only taken his pulse 2 or 3 times since Dec because I dont want him to be constantly thinking of, and being reminded about it, and possibly cause him more worry which can only exasperate the situation.

The 2 or 3 times I have taken his pulse has been when I can see his heart pulsate through his clothes and it has always been 95 to 110, and thats caused by very little activity!!

The tests Thomas had done back in Dec/Jan were, an echo, which showed all the chambers above normal measurements, and as I said earlier 3 of his valves are leaking ''mildly''.

Hes had a stress test which had to be stopped because the further he walked on the threadmill the lower his bp went until his blood preasure dropped suddenly, and he almost passed out. He also had a ct scan which showed his arteries are ok, and a small pfo.

Thank you for your reply.....I hope Brian is continuing to recover, and you are all coping ok.....I know it cant be easy. You are an inspiration to me!! :cool:
 
Hi Bad Mad.....Yes I remember the death of Cormac well and I saw that Late Late Show which his Mother and girlfriend were on. Its terribly sad.

***To everyone:

Can you believe it ....yesterday another 16 year old boy died at school. WHAT THE HECK IS GOING ON.

My friend had a suggestion yesterday as we spoke about the news of another boys death.....could it be the fact that a lot of young people are drinking high energy drinks nowadays which almost all contain large quantities of caffeine (sp) , on top of the coke, chocolate etc that they consume we figure mabey their hearts are beating too fast for too long which could cause the muscle to thicken.

These drinks have only really been available under 10 year or so here !!!!!!


Just a thought. I just wish someone could figure out whats going on. I dont know how these poor families are coping with such awful pain and grief.
 
**Its been announced on the news that ''another 16 year old boy had died suddenly'' ........what on earth is happening.

Is it because these boys were inactive all summer while on school holidays and the sudden physical exercise since they returned to school is causing people with an undiagnosed problelm to die ? Why is it boys. Thats 4 young people lost their lives to this scary monster that is S.A.D.

Is this happening in the states and other countries as well.
 
Jacqui,
This must be incredibly exasperating. I wouldn't worry about his pulse. At his age that rate is not terrible. I also wouldn't worry about his valves. His stress test is fairly worrisome, though. What drugs and dosages is he on right now? When will he get to see another doc? Do you have the results from his tests in England so that you can show his doc? He should not be exercising much, especially while standing. Riding a bike is much easier on his heart. Does he have any problems with retaining fluid?
 
Is this personal experience helpful?

Is this personal experience helpful?

Hi Jacqui - I hope you are happily settled back into Ireland. I don't recall what Thomas' exact diagnosis is but regarding my childhood experience: when I was in school, my doctors never let me participate in the school physical education programs or any after school sports. I walked everywhere throughout the little town I lived in, and rode my bike a lot, and swam throughout the summers though, and stayed trim and I always felt fine--or I never knew the difference anyway. Anyway, the medical people always explained that if I ran or did other types of activities like that that I could have sudden death from the aortic defects.

I was never on any heart meds in my childhood; but heat would then--and still does--really wear me out.
 
Falling BP w. Exercise

Falling BP w. Exercise

Hi Jacqui,

Hopefully, your cardio doc will be able to provide some answers as to why your son's BP dropped so radically during the stress test.

One of my teachers who retired a couple of years ago had a problem with his heart rate and blood pressure falling when he exercised. He engaged in an active lifestyle with coaching assignments and bicycling. After engaging in strenous exercise his heart rate would often plunge to less than thirty beats per minute. He was finally diagonsed with an stimulation problem. That electrical thing that the heart does just wasn't working right. His cardio docs feared that it would drop to zero at some point. They discussed several methods for fixing it and he finally got it fixed this last summer. Now, his heart rate goes up like it is supposed to with exercise, but he often complains that it doesn't have the "staying power or endurance" that it used to.

Obviously, it's a logical course to get your son hooked-up with the best cardio docs you can find and get some answers.

-Philip
 
Hi Deanne, Thomas didnt actually have any tests done in England. We waited 4 months for the app to see the cardio, who, at the visit suggested doing the echo etc again. We still hadnt received an app for the echo when we left. We are now in the same situation here. I have taken Thomas to our GP and he has written to Dublin to get Thomas seen by an EP specialist there (the same cardio that I am waiting to see ). The only meds he takes are 2.5mg of emcor daily.

Hi Susan, Thomas doesnt have an exact diagnosis yet. I think that is the most frustrating part really. We are playing the waiting game again.

Hi Philip, Than you for your reply.
 
Hi Jacqui

4 cardiac related deaths in a week, of 4 young boys in a country of less than 7 million, beggars belief.

The latest was a 13 year old boy who died only miles from, and once again in the same circumstances (Gaelic Football training) as the 11 year old boy who died on Tuesday past. He died of Obstructive Hypertrophic Cardiomiopathy.

This latest young lad had a history of heart trouble but after an operation recently got the all clear to play. I'm not sure what the condition was, and the post morterm is being carried out today.

Tragic.

I'm sure about your theory regarding caffenine/energy drinks, but I'm sure anything that speeds your heart up prior to intensive training isn't going to help. However, we know from a study in the Veneto region of Italy that adolescents and young adults involved in competitive sport had a two and a half times higher risk of sudden death.

They are the only country that I am aware of that provide screening for all young people (think over age of 12) involved in sport.
 
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