Baby girl, dilated miocardyopathy from Argentina, need help

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Willy » Za Nov 05, 2016 5:05 pm

Thank you Aleta. Thank you!
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Aleta » Vr Nov 25, 2016 10:53 pm

Hi Willy !

We have great news to share, on monday we went to our cardio appointment, and Lara has reach the normal range of SF! She is now 32%-35%, can you believe it??????

Those numbers are not to acurate, because Lara was crying a lot because she was having a cramp in the hand (she have those sometimes, always in the same hand, so we have to check that), and the heart was forcing her function, it was like a stress test as the cardiologist said, and as she decrease Fursemide dose again (Lara is having only 7mg at day) we'll have to come back december 2 to check everything is good with that.
Then, we'll see real numbers but cardiologist said that there are inside the normal range for sure, no to way different.

The heart measures are the same, but when I got home, checked the report and there was 1mm less.

Mitral valve is almost perfect like they repair it, nothing to worry about that for now.

We are so happy and grateful! I'm sorry for no writing before, but we couldn't celebrate to much because Lara is having broncospasm since saturday! So we've been not that calm. She is doing better everyday but it's been hard, not eating to much and a lot of cought.

I hope she gets good soon!

But even so, I hope i'm not being stupid, but I'm really happy and even optimistic, can you believe it???

Thank you so much for everything Willy, you have so much to do with this!

I hope you are doing great and depression has gone for good.


Kind and warmest regards and happy hugs!

Aleta.

sasje1903
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor sasje1903 » Za Nov 26, 2016 1:11 am

WoW Aleta great news!!! Told you Lara is a strong girl ;-)

X
Laatst gewijzigd door sasje1903 op Di Dec 06, 2016 10:05 pm, 1 keer totaal gewijzigd.

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Aleta » Di Dec 06, 2016 9:14 pm

Thank you Saskia! You give me a lot of support!!!

We went last friday to check if the decrease of fursemida dosage was bad for lara, but she is good. Her SF is %32/%34, a little bit lower than the last time becase she was not crying this time. We have to como back last week of january, I hope everything keeps fine.

I was looking at the measures from diagnosis and measures from last few echos, and her heart is 1 or 2 mm smaller, BUT at diagnosis she was just four months old, and noy is almost 3 years! Just to see the echo pictures, the left chambers look so big at the diagnosis and now, they are big but not THAT big.

I hope things keepsgoing good!!!

Willy, how are you?

Hugs,

Aleta.

sasje1903
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor sasje1903 » Di Dec 06, 2016 10:06 pm

Great news!!!

Emma's check-up is december 19th!

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Aleta » Di Dec 06, 2016 10:16 pm

I'll remember, same day Benjamin's pediatrician appointment!

Good luck lovely Emma!!!

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Willy » Wo Dec 07, 2016 2:59 pm

We have great news to share, on monday we went to our cardio appointment, and Lara has reach the normal range of SF! She is now 32%-35%, can you believe it?????

I had read the good news but some how my reactio0n got lost

Excellent news

Even above maximum of 30% :D

Enjoy the results, it was hard work for all of us since 2014

Give Sebastian a hugh from me and Lara too, she is a great girl!
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Aleta » Wo Dec 07, 2016 4:24 pm

Thank you Willy!

We are so grateful with you!

I hope you are doing well :)

Aleta.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Willy » Wo Dec 07, 2016 4:38 pm

My psych asked me to reduce my antidepressivum with 10mg....that went wrong

So I had to increase thew dose again, feel terrible at the moment but I can handle this, I have been here several times :(

Lets do a FaceTime when I am feeling better again

Sorry for complaints
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Aleta » Wo Dec 07, 2016 5:12 pm

No sorry!

Please take care of yoursefl and let's do the facetime when you feel better.

I hope you feel good soon!!!

Big hugs!

Aleta.

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Willy » Wo Dec 07, 2016 6:19 pm

I am just as strong as Lara!
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Aleta » Wo Dec 07, 2016 8:42 pm

Yes, I know you are :wink:

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Willy » Vr Dec 09, 2016 12:28 pm

Hello Aleta I shared your last SF result with my Dutch friends on Facebook, I hope you do not mind

I do this to let parents know that there are treatment options other then ACE inhibiters and betablockers

Maybe you can tell my Dutch friends something about your experience so far with the heart failure protocol

You do not have to do this at all if you do not want to!!
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

Aleta
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Lid geworden op: Zo Aug 03, 2014 6:39 pm

Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Aleta » Ma Dec 12, 2016 4:32 pm

Done! :)

Willy
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Re: Baby girl, dilated miocardyopathy from Argentina, need help

Berichtdoor Willy » Di Dec 13, 2016 4:48 pm

Excellent I hope parents with CMP kids read your message

Thank you for doing this
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina


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