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.
Gebruikersavatar
Willy
Verslaafd aan het forum
Berichten: 12551
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

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

Berichtdoor Willy » Vr Jul 07, 2017 10:45 am

sorry for the late reaction on your may post!! :(

My mood improves slowely, only the mornings are bad. I counter that by early out of bed and then walk with the dog

Execelent that the cardio did not raise meds!!

I also use Jigsaw you mentioned, so look at the dosis magnesium Lara needs and break the tablet the right way
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 466
Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Vr Jul 07, 2017 6:35 pm

Thank you Willy, and I really hope your mood improves soon.

I showed facebook pictures of you to Lara and she wanted to know about your family!

Lots of hugs!

Aleta.

Gebruikersavatar
Willy
Verslaafd aan het forum
Berichten: 12551
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

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

Berichtdoor Willy » Zo Jul 09, 2017 10:40 am

It is already much better then a couple of months ago, I am going in the right direction !!
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 466
Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Do Sep 21, 2017 5:39 am

Hi Willy!

I hope things are doing good there!

We had Lara's cardio check up last week, I'm sorry for take this long to write, but I had my arm broken, then surgery, a day after clinic discharched me we had cardio, and after that took a rest. I'm ok now (it's a lie, still hurts).

Lara's heart improved a little more, Shortening fraction is now %33-35, it %1 but it's a lot for us!

The size was 3 or 4 mm bigger, but doc said not to worry because Lara grew a lot lately, in last 4 months she gained 1kg and grew 3cm!
I asked if what we need is that heart siza stays tha same while the rest of her bdy grows, and doc said yes, but is a little and said that is nothing to worry about (I'm a little).

Then she compared the Z-Score from 2015 to 2017, then was 7,2 and now is 2,3!!!!! Thank god!

So, doc stopped Spironolactone, and decrease carvedilol. it was 4,200mg and now a pill of 3,125. Scary.

We have to go back october 9 to check if everything keeps ok, and if it's so, I believe she said 4 months, but I'll ask less time!!!

Willy, all of this is in big part, thanks to you, you can't imagine how grateful we are.

No I'm gonna put my arm to rest again.

Big hugs!


Aleta.

Gebruikersavatar
Willy
Verslaafd aan het forum
Berichten: 12551
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

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

Berichtdoor Willy » Do Sep 21, 2017 10:38 am

Good news about Lara bad news about Aleta

Cardio is realising that she is slowly improving from an chronic incurable disease

Do not worry about decreasing MEDS the cardio does only decrease meds because they think they are not necessary any more
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 466
Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Za Sep 23, 2017 2:47 am

Thanks Willy, I'll give you the update of the october 9 check up.

Happy autumn!

Gebruikersavatar
Willy
Verslaafd aan het forum
Berichten: 12551
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

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

Berichtdoor Willy » Do Sep 28, 2017 5:17 pm

oke
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 466
Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Di Okt 17, 2017 3:21 am

Hi Willy!

We went to Lara's check up after two weeks of decrease Carvedilol and stop Espironolactone. Well, LV was about 1 or 2 mm smaller, and shortening fraction was %35/36, a little better. Could be a better day for her or something because the difference was small, but still, function at normal range, with no diuretics!

Heart still weird shape and a little enlanrged but no giant like in the beggining.

We have to go back at the end of january, and if things keeps looking like this, doc will start to decrease one of two meds Lara is still on, carvedilol or enalapril, and with time leave her wit just one. This is great but also scary!

What do you think about all of this???

Thank you so much Willy, I hope you are doing great.

Ale.

Gebruikersavatar
Willy
Verslaafd aan het forum
Berichten: 12551
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

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

Berichtdoor Willy » Do Okt 19, 2017 6:25 pm

What do you think about all of this???

I think she gets better :D

this is for cardiologists completely new, Lara gets better and better

So I can understand thet they are carefull with lowering the meds

Congratulations with this result
Met vriendelijke groeten,

Willy Witsel

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

sasje1903
Verslaafd aan het forum
Berichten: 162
Lid geworden op: Wo Apr 27, 2011 5:03 pm

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

Berichtdoor sasje1903 » Di Okt 24, 2017 10:59 am

Aleta schreef:Hi Willy!

We went to Lara's check up after two weeks of decrease Carvedilol and stop Espironolactone. Well, LV was about 1 or 2 mm smaller, and shortening fraction was %35/36, a little better. Could be a better day for her or something because the difference was small, but still, function at normal range, with no diuretics!

Heart still weird shape and a little enlanrged but no giant like in the beggining.

We have to go back at the end of january, and if things keeps looking like this, doc will start to decrease one of two meds Lara is still on, carvedilol or enalapril, and with time leave her wit just one. This is great but also scary!

What do you think about all of this???

Thank you so much Willy, I hope you are doing great.

Ale.



Great news Aleta!!!

Aleta
Verslaafd aan het forum
Berichten: 466
Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Do Okt 26, 2017 10:59 pm

Sorry for the late response, take care of my arm takes so much time of my day :(

Yes, are great news! But is hard to be absolutly happy, I'm still scared about her future. So many kids reach normal ranges and sizes and after a few years they get worse.

I,m not sure axactly how unpredictable this disease is, but I guess the answer is enjoy the present.

I'll be wainting to hear good news about Emma!
Hugs!
Aleta.

Gebruikersavatar
Willy
Verslaafd aan het forum
Berichten: 12551
Lid geworden op: Di Okt 09, 2001 3:00 am
Locatie: Exloo
Contact:

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

Berichtdoor Willy » Vr Okt 27, 2017 11:32 am

I suggest that we adjust dosis on the basis of Lara's weight until she is completely of meds

then we stop adjusting so Lara will get very slow "less" supplements

This maintenance dosis she will use for the coming 10 years
Met vriendelijke groeten,

Willy Witsel

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

Aleta
Verslaafd aan het forum
Berichten: 466
Lid geworden op: Zo Aug 03, 2014 6:39 pm

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

Berichtdoor Aleta » Vr Okt 27, 2017 3:38 pm

Hi willy

Ok, i'll do the Numbers and get back to you.

Thank you!!!

Aleta.


Terug naar “Treatment Heart Failure (cardiomyopathy)”



Wie is er online

Gebruikers op dit forum: Geen geregistreerde gebruikers en 1 gast