One year ago today...

I was sitting at this very computer looking up some silly thing or another when I started to feel faint and get the then ever increasing chest pains. A painfully long trip to the emergency room via ambulance with lights and sirens blaring, and an angiogram later I found out that I had a heart condition. DCM (Dilated Cardiomyopathy). Wait, scratch that, HAVE a heart condition. One year seems like an eternity. In November I had an EPS done only to find out that I have TWO heart conditions, the first being the DCM and the second a very rare genetic condition called Brugada Syndrome. Now I have and AICD, a handful of pills to take twice a day and a new lease on life. One year ago today my life changed. Four years ago today I had a preemie son named Mackenzie that died at birth. Since his death, I wanted one last child to complete my family. I got pregnant and had a healthy little boy that caused my DCM. If not for the DCM, they would not have found the Brugada. I would have died. So really, 4 years ago my life changed forever. One year ago my life changed forever. Every day is a gift my tiny son gave me. Every day is one more that I remember that life is precious. If you're reading this, go hug your children, go call your mother, and remember that life is too short to dwell on small things. Thanks for letting me ramble!
Juni

By martzj
Posted October 1, 2008 at 8:14 pm
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Juni,

What an extraordinary story. And you have a little son to love on top of all that.

I was at the hospital all morning with my guy who was getting some tests and while seated near the nurses station I heard a nurse on the phone rattling off this incredibly long list of heart ailments of one of the women waiting on a hospital cart. She had everything I've ever heard mentioned here plus one I hadn't....Brugada Syndrome. I researched it when I got home and now you have posted. A portable defib around dramatically increases your odds . (smile)

You have my most heartfelt good wishes to you and the child you hold against your heart every night when you put him down to sleep. What a miracle.

Jaynie

By arizona1
Posted October 2, 2008 at 3:48 am
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I had to look this one up too.

Enjoyed reading your post and learning that you have a little miracle, despite all your heart issues.

Thanks for sharing

Kathi

By WarmNBrace
Posted October 2, 2008 at 11:08 am
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Juni,

First let me start by saying.... Happy 1st anniversary !
Your post shows how precious life really is. We shouldn't and can't take things or people for granted.

Ditto.... on having to look that one up.

Hugs to you and your precious little one

Marie

By lkay
Posted October 2, 2008 at 12:17 pm
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Juni,
sorry I let that anniversary slip by without adding my comments - I am so glad you are here to celebrate with us.
I love the new picture of you - physical evidence that life goes on even in the face of such hardships.

Be well,
Laura

By Rose
Posted October 2, 2008 at 2:46 pm
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Juni,

You have been trhough so much. It is amazing that you are able to be so positive. You are a source of encouragement for all of us.

I am so sorry you lost one little boy. I can only imagine your grief. I am glad you next pregnancy was successful and you have your darling little boy to hold tight. They always say God works in strange way and in your case He sure did.

Warm Regards,

Rose

By Starlet32079
Posted October 12, 2008 at 12:18 am
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Juni,
I wanted to tell you that you are not alone with the crazy Brugada Syndrome thing. My husband's grandfather passed away at age 51 in his sleep, He found his mother in her bed when he was 12- she was 32, and 3 years ago his little brother passed away within 5 min of waking up...he was 21. No one knew what was happening but knew that it was a heart thing. In March of this year My husband and I took our 8 yr old daughter to the ped. cardiologist and had a EKG done. It came back a little abnormal, then the doc gave my husband a EKG right then and there and his was "text book Brugada EKG" according to the doc. I got him into the Adult Eloctro doc and he agreed it was Brugada's. He went in that same friday to have the ICD implanted. This was in March of 2008 and since then 7 other Aunts, Uncles and cousins have tested Positive and now have the ICDs implanted. The scary thing about it for us is that 100% of them who have been tested and gone through the EP study all have it and had to have the ICD's . We feel very lucky that the family now has a diagnosis and have the ICD's now we just need to keep testing all of the children.
Thank you for sharing your story with everyone! It is nice to hear other peoples stories.

By Sandlocks
Posted November 19, 2008 at 8:46 pm
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Juni:

I was a healthy and active 52 year old who started experiencing chronic nausea which caused me to go to ER on many occasions. Last November, I had an MRI of my brain and they found a cavernous malformation, a congenital problem where the veins were tangled up and could cause a stroke. I had to have brain surgery to remove it and while I was recovering I went into cardiac arrest three times. After I got home and was doing followups, a cardiologist told me I had Brugada. I had my AICD put in September (2008) and two weeks ago went to the hospital again with nausea and was admitted. On day two, my defib fired off three times and then that night fired off 24 times in three hours. Apparently I have a problem with potassium/magnesium deficiency. Today my electro told me that my twin sister definitely has Brugada and my older sister probably has Brugada. My twin is in perfectly good health and doesn't want to have to get a defibrillator. I told her I have already gone through all the heartache (literally) and she is lucky that we have found this before something tragic happens. I joined this site today and hope to find information on how I can lead a normal life because I'm not ready to quit being active! You're young with children and I bet you're not ready either.

By DrD11
Posted November 20, 2008 at 4:00 am
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This journal/discussion group is a reminder that up to
present we still do not have a method to discover
potential fatal cardiac arrythmias at the time of any routin examiniation.The medical community is working on that but it is still "Not there".
We are still looking for "Few bright men"that will get us there.

By Speedster85747
Posted December 7, 2008 at 10:56 am
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Hey Juni,
Sorry to hear about your conditions. I myself have Concentric hypertrophic cardiomyopaty with obstruction - never had any symptoms til last summer. Keep smiling, good luck

By Brown1964
Posted December 7, 2008 at 11:31 am
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Sad to here of your experience, first with the condition and , then the lost of your first child, but then the blessing of the second child who is growing nicely, and how positive you are about all that you have gone through. This just help us to see that their is a God above that cares about us, and his name is Jehovah, and so a loving father he wants the best for us, and so he has promised us that he will wipe all tears from our eyes and death and all other ailments will be no more. Revelation 21:1-4 what a wonderful thing to look forward to. Just keep smiling and look towards that day.

Welcome to Inspire!

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