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1. • CommentAuthorsusan
   • CommentTimeJun 9th 2006 edited

    
   I just wanted to post a note about the specialised SCD nurse now placed at the Royal Victoria Hospital. Her name is Tracy Jardine and I was wondering if anyone knew how I get in contact with her? do I need a referral from my own GP? and what department would she be in? I really really need to talk with her.
   
   My son is at risk of SCD, he's just 8 & takes part in various competitive sports - his blood auntie died last March of SCD, just 24 & leaving 2 little children behind. We've all been so devastated, she had no prior symptoms - a bolt out of the blue & so far I've not been at all satisfied with the care we've gotten. Our GP admitted that I knew more about the condition than she did. He had the Echo & ECG but I've been told that the ECG needs to be read by the consultant rather than a computer?
   
   I've been trying to get answers for over a year now & to be honest everyday I fear for my son. It's doing my head in. I've scoured all the sites on the internet concerning SCD, This website has been the best so far, by miles. So informative, yet, easy to understand...Big thanks to the Cormac Trust.
   
   I have another appointment for Jack to see his doctor next wednesday 14th June so I'd be eternally grateful for any info before then so if anyone can help me, please email me at siouxi@hotmail.co.uk
   
   (even if it's after that date please still email me...many many thanks) x
2. • CommentAuthorGrace
   • CommentTimeJun 13th 2006

    
   Tracy Jardine works along with Dr.McKeown in the Cardiology department. (In my case anyway thats how I know her. )
   
   Normally your doctor will refer you to a cardiologist in Belfast Royal, in certain cases tracey will be taking care of the general up keep of the situation.
   
   I will email you her contact details.
   
   If anyone would like me to post these on the website I will ask Tracy for permission.
   
   Good luck with your situation, Please update me on the progress.
   
   Grace McGinnis
3. • CommentAuthorbridget mcanallen
   • CommentTimeJun 14th 2006

    
   Susan
   
   Sorry to hear about your aunt and that you're worried about your young son. It's better to be safe than sorry however, as the cardiac conditions that affect young people may not be obvious and can take effect very suddenly. Sorry I didn't get back earlier, but I've been a little unwell myself with a bad cold plus hay fever, and was also away for a day or two.
   In the last couple of days I was trying to contact Tracy Jardine, and did catch up with her. As Grace has kindly confirmed, she is in the RVH, working with Pascal McKeown in the Cardiology Clinic. The RVH is the right place to go, as they do specialise in inherited cardiac conditions (the ones which affect the young) and you have the right to ask for a referral from your GP.
   I hope that this information is useful to you, and I wish you and your son all the best.
   
   Bridget McAnallen
4. • CommentAuthorsusan
   • CommentTimeJun 15th 2006 edited

    
   Thank you Grace & Briget, both of you have been really helpful. I went to see the doctor today but she was just as uninformed as the other doctors...to be fair though I think when it comes to such serious conditions they know they're not in the position to advise. She told me to email or phone the cardiologist Jack has already been to, which was Dr Sands at the paediatric cardiology dept, and explain my situation, and hopefully won't have to go through the re-referral route. Thing is, Tracy Jardine is with Dr McKeown in the adults cardiology dept...I've wanted to speak with her since first reading, months ago in the Telegraph, that the charity was going to fund her post. AND shame on the government for not funding the position....disgraceful...I suppose I'm putting too much emphasis on wanting to speak with Ms Jardine...I'm just desperate to talk it over with someone who specialises in SCD, I'm sure the paediatric dept know what they're talking about. I'm just freaking out.
   
   I'll write both departments an email & explain everything..I'm just not content with a 30 second ECG & an echo, although doctors tell me thats enough to tell...I just have a feeling that it's not enough...Jacks Aunt, (my sis in law), died from what I believe was the Long QT...I say 'believe' because her husband said he wasn't told the actual name of it but that it was 'sudden death syndrome, due to the electrics in the heart & that it was genetic'. On the death certificate it says 'natural causes' too...I really don't think they should state that...they should say specifically that it was SCD...for the future generations.
   
   anyways..Im going into a full rant here lol, sorry...thanks so much for the info & I'll be sure to keep visiting the site...just knowing that we're not alone means alot. x
5. • CommentAuthordonna scott
   • CommentTimeOct 7th 2006

    
   I lost my husband last year to hcm and also have 2 sons being screened for this condition,iam also very frustrated with way we are treated.Its easy for them to say everythings ok for now and to come back in 18 months but we have to live everyday with the fear of what might happen.My sons were both into alot of sports my eldest was last years u.12 dublin 200m champion for the all irelands and they have both been told not to do competetive sports which is terribly hard on them.On monday my son was brought home from school with chest pains i rushed him to gp who contacted crumlin for an emergency appointment,last night i was told they will see him on the 3rd November,amonth away?!what am i supposed to do till then.I sympathise with you totally because i understand your fear and i hope you finally get the help and support we all deserve.
6. • CommentAuthorbridget mcanallen
   • CommentTimeOct 9th 2006 edited

    

   I lost my husband last year to hcm and also have 2 sons being screened for this condition,iam also very frustrated with way we are treated.Its easy for them to say everythings ok for now and to come back in 18 months but we have to live everyday with the fear of what might happen.My sons were both into alot of sports my eldest was last years u.12 dublin 200m champion for the all irelands and they have both been told not to do competetive sports which is terribly hard on them.On monday my son was brought home from school with chest pains i rushed him to gp who contacted crumlin for an emergency appointment,last night i was told they will see him on the 3rd November,amonth away?!what am i supposed to do till then.I sympathise with you totally because i understand your fear and i hope you finally get the help and support we all deserve.

   
   
   Dear Donna
   I read your message yesterday, and I want to sympathise very deeply with you. Firstly, on the recent tragic loss of your husband, which I am sure is a source of great grief to you and to your family, and I know you will have been finding it very difficult to deal with the grief that your young sons have been feeling, and to help them adjust to the situation in itself. Added to this now, as you have explained is the realisation that your two boys might have HCM also, and now their worries, fears, and frustration at being told not to do competitive sports. At least as you have indicated, you could and should be treated with great care and sensitivity, and this does not seem to be happening.
   
   I have made some enquiries since yesterday for you, and I hope that I will be able to give you some advice that might alleviate your distress. Firstly, Donna, there is a Cardiomyopathy Support group in the Republic - (and also one in the North which is separate.)
   It sounds like your most convenient one is in the South and meets sometimes in Dublin, and it just so happens is meeting this Saturday coming in Dublin. I will find out the exact details and put them on this message board tomorrow. I am told incidentally that Tracy from the Irish Heart Foundation has the exact details -but from where I'm sending this, I can't get her number just now. If you can get to that meeting, you will be able to meet others who have lost family members and who have had warning not to play sports at a high level, etc. You may also be able to meet at least one excellent consultant who may be able to give you more help and advice. If you can e-mail me with contact details at:
   mcanallens@aol.com I will be able to tell you more.
   
   You didn't say for sure if your sons have been screened as positive with HCM, and if there's uncertainty, then the instructions about playing sport would be a precaution. Depending on whether they do have HCM and their precise condition, they can hopefully be treated. But at this stage I know it's very worrying, and it would be understandable it your son was feeling nervous and upset, and took chest pains as a result. This happened to both my sons and my husband in the few months after Cormac's death. But under no circumstances should chest pains be treated lightly, and therefore it is very important to get him looked at as soon as possible. I am told by well-informed contacts - and as you have mentioned Crumlin Hospital it is appropriate - that the best thing to do would be to bring him to Crumlin Hospital Casualty straight away. If you do live too far away, and anyone takes chest pains, then your nearest hospital's Casualty department.
   
   I know I could talk all day about these things, but I have to rush off and will contact you with that other info tomorrow. So, Donna, sad and difficult though it may be just now, remember that your family are lucky in that they have now been screened and hopefully avoid another tragedy. Your two sons have their lives, and with careful monitoring and advice, I hope they will be able to adjust to whatever situation they may find themselves in. Good luck
   
   Slan agus beannacht
   
   Bridget
7. • CommentAuthorbridget mcanallen
   • CommentTimeOct 11th 2006

    
   Donna
   just getting back to you as promised. The Cardiomyopathy Support Day is on this Saturday 14th October in the Grand Canal Hotel. If you need further info, you can ring Tracy - or whoever is currently dealing with this event - at the Irish Heart Foundation, tel: 01 6685001. I hope you get this message and can get all the help you need to make you all feel better. Please feel free to contact me again.
   
   God bless
   Bridget