One more member of the club

[Lisa Salberg]

Hi everyone,

We have shared a great deal of information about ourselves over the past few years and have been an amazing support to each other along the way. There is something that only a few of you knew about my own situation and now that things have changed I thought I would let the rest of you know too. 3 years ago I received the information that my daughter was genetically positive for HCM. From the age of 3 she spoke of her heart 'bothering' her, but all echos, ECG and testing were "normal". Yesterday was the girls trip to Boston for our check ups. My daughter had been complaining about a pounding heart beat and a racing heart for the past month - I knew what was coming.
Yesterday Becca was diagnosed with HCM. She has mild SAM and is a photo copy of my heart - it is really strange to see how similar we are.
I am not surprised I guess you can say that I am disappointed and frustrated that she will have to deal with this disease as we do. What is next for her includes some more testing and then start her on meds. The question of an ICD will also need to be addressed but the hope is we can put that off for a little while to allow her to grow a little more.

If anyone ever wondered what motivated me to keep the HCMA moving forward - I think you all just figured it out. Our children WILL have a better future and WE will make sure of it.

Best wishes to all,
Lisa

[Pam Alexson]

Lisa,

My Heart goes out to you in a very big way as her mother and of course to Becca. Becca, you are a brave little girl. I am proud of you and look forward to meeting you in the future.

If Becca had to get this genetic heart disease, at least she is trully blessed to have you as her mom, expertly and lovingly there to make sure she gets the best care possible and to be giong to one of the best places to ensure that she gets what ever special and unique care her HCM heart needs .

All my best , thoughts and prayers .

Pam

[Glen Beamish]

Lisa, I wish Becca all the luck in the world.
If she had to have it, she could not have picked a better situation to have it in.

[Reenie]

I'm sorry to hear Becca's been diagnosed now. Tell her that we're all with her in spirit when she's feeling bad.

I understand the complaints. My kids complain sometimes too and we haven't had any dx's yet. I'm pushing my husband to take the kids to Mayo next time because I have only about 10% confidence in the doctors who are currently reading the echos. The guy who read my daughter's (who is the biggest complainer and asks me to listen to her heart weekly) said her gray-out spells, twinkly lights, and general feeling bad could be caused by tight vocal chords. What the heck does that mean??? :?

Reenie

[Eileen2345]

Lisa, I am sorry about Becca's diagnosis.

I have 2 of my own and as of yet, they are too young to know for sure if they will have it. So far, not yet, but that can change when they get into their teens.

Becca has wonderful support and the best mom ever.

Many hugs,
Eve

[Cynaburst]

Lisa - I am so sorry that the ball has now dropped. I know that you have been waiting (and I suppose all of us with kids have been in your shoes to some degree) to see when the day would come that you would have to address this situation.

I will save the platitudes and just say that I am with you and share your pain. I know how hard it is when you are dealing with your child's issues. It is so much easier to face your own problems than your kid's.

Best wishes to Becca.

Cynthia

[eatwell]

How old is Becca?

I wait and wonder about hearing the same news in years to come.

Hang in there.....She's lucky to have you as a Mom.
Laura

[Linda]

Lisa - We're here for you - Linda

[Lisa Salberg]

Thanks everyone. Becca is now 10 years old. She is doing very well with the news.

Again...thanks,
Lisa

[SharonBates]

Hello Lisa,
I know it is sad and strange to see your daughter following your footsteps in the genetic way. My hopes and prayers remain with your family through the tough time of change. Through all the tough times know that your daughter is much better prepared and educated with all the work that you do for people out here on the message board. Remember what you say about a child's eye color -- they can pick that up from their parents just as much as they can the shape of your heart. Please know we are here to offer our support and concern for you and Becca along this path, too.

We are all grateful to you for your continued support. I hope that we can offer our support, caring, venting ears, compassionate hearts, warm comments, and love for you and your family in what you have done for us over the years.

Lovingly,
Sharon

[Donna]

Lisa and Becca, and the rest of the family. I wish you all the best. I know it is hard, my two boys have gone through the same thing. One at 17 and the other at 12. I think they have a better time adjusting then those of us that don't know about it till latter in life.

I do wish you all a good new year and may God Bless your family.

[Laoshur]

Lisa,

As soon as I saw the topic of your posting, I knew what it was about. I am so sorry for all of you that Becca's diagnosis has become reality, but I am somewhat relieved that it is official. I believe it was last summer or spring that you wrote last about her having symptoms. Ever since then I have felt that the time was coming soon. I will pray that your work for all of us and your experiences will protect her from having to experience the difficulties that you and your family have faced.

Please give Becca our best wishes from all of us.
Rhoda

[Midge Rollins]

Lisa, I am sorry about the fact that Becca has HCM now. The good news is she has a great role model in you and as we have said before people with the positive attitudes win out. She knows you have it and lead a mostly normal life so that will give her faith that she can too. Before I read this today I had just called my daughter in law to remind her that her 10 yr old needs checked this year. Just back from our trip had a great time but home sure looks good. I will keep you in my prayers.

[Janet McClure]

I am so sorry you had to get that news! I will be thinking of you and praying for Becca as well. You are an amazing person and Becca is very blessed to have you as her mom. I am taking Emily in the morning at 9:00 for her yearly echo. She also is 10. Two weeks from today James will have his myectormy. So as a mom, I know what you are feeling! My thoughts and prayers are with you! Janet

[cynthia]

My heart also goes out to you Lisa. She is in the best of hands -- her doctor's and YOURS! You are a wonderful person and she will forever be thankful for your total commitment and compassion to HCM and the entire community. I myself will be bringing my 11 yr. old son to Boston on Feb.17 for an echo...I will be anxiously and nervously waiting for the results. I know that he has a 50/50 chance of inheriting HCM. At the same time, I'm thinking if he does have it, medical advances within the next 10 years will be amazing and our children will have all of this available to them. They are extremely fortunate to have access to such wonderful medical care...Becca will be in great hands!

[angall]

Lisa
I'm so sorry to read about Becca. Please know we are here for you as you have been here for us.

Take care and give Becca a HUG

[Abbygirl2]

Lisa,
So sorry to hear of Becca's diagnosis. Your family is in our hearts while you go through this difficult time.

((hugs))
Pam

[Deborah H.]

Dear Lisa,
Wow, it seems like yesterday I contacted you in a state of panic about my 8 year old. We've been to Minneapolis (thanks for your direction) and are now at Johns Hopkins in Baltimore. Her Dr. is Jane Crosson, you referred us to her and she's tremendous. I know you know about all there is to know, but Dr. Crosson's research was encouraging. We are awaiting more symptoms before the ICD implant (and hopefully lots of time for growth). This is a hard wait and see reality for us also. You and Becca and family will remain in our prayers.
Tell me about June 9th and this Morristown Meeting. Where do we meet? Where do we stay? Can we bring our kids? I think Hannah and Becca might find more in common than just their heart measurements!I'd love for them to meet, and can't wait to finally meet you.
Deborah H.

[Reenie]

Hi Deborah. THe meeting will be in Morristown, NJ June 9-11 and they will have a lot going on. Kids are always welcome and they will have babysitters for them while the parents are in meetings (with cool things to do!) There will be doctors from the major treatment centers along with other presentations. They usually discuss genetics, obstruction, symptoms, ICD's and a lot of other issues. They encourage the attendees to take notes and ask questions. I hope you can make it!

Reenie