Anyone with a child on the Active Transplant List?

[lucyep]

I should probably have put this in the Special Needs section, so sorry if posted in the wrong place.

DD is on the Active Transplant List waiting for a new heart . I just wondered if there was anyone else on MN with a child in a similar position that I could talk to. Or even post transplant if possible.

Thanks to you all!

Misdee's DH is on the Active Transplant List and currently has LVAD and is in Harefield

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I have had 2 kidney transplants similar set up I think I had the first at 18 Misdee is your woman for hearts

Not in that situation - but just wanted to say that I am thinking of you {{hugs}}}

Hi

Yes, my dh is in harefield hospital waiting desperatly for a new heart. he is an urgent case. I cant comment on how it must be waiting for your child to have a transplant. but i can share the ups and downs with you.

there is a thread on here when peter (my dh) got his 1st transplant call. it was a really strange night with a lot of mixtures of emotions.

Can i ask what heart condition your dd has? Peter has dilated cardiomyopathy, and i belong to a support group with a mixture of members from grandparents of children with DCM to actual grandparents themselves.

Hi Misdee

DD has just turned 6 yrs old. She has suffered severe congenital heart disease since birth and has many heart conditions. She is referred to as only having half a heart: TAPVD, AVSD, TGA, Hypoplastic Left Ventricle, Pulmonary Stenosis (valvar), Right Atrial Isomerism, Left Inferior Vena Cava, Total Heart Block thus a pacemaker, Asplenia, Malrotation of the stomach and intestines and poor sight.

If I am right, you are friendly with Sheran, she has told me a lot about your husband and I remember reading about him somewhere too.

DD is now under the care of Great Ormond Street, she isn't in hospital at the moment. They say she hasn't probably got a year without getting the transplant and they think she might only be waiting for around 3 months before a donor organ becomes available. Mixed emotions over it all, but then that's only natural.

If anyone reads this and is in Boots, on their over the counter pharmacy section, by the till you will see a box containing badges for the British Heart Foundation. DD is on the side of the box (little blonde haired girl) and also on the literature that is attached to the pin badge. Badges are on sale for £1 each.

Thanks everyone for your kind words and I will keep you all posted no doubt.

Take care

xx

I hope you get a call soon. try not to worry too much, and IIRC children usually wait less time than an adult.

Yes, i 'know' sheran, her boys have the same condition as dh, tho his is viral, and sherans boys is inherited.

where abouts are you btw?

Misdee,

I never knew your dh was suffering from a heart condition. Thoughts are with you as with lucyep, godspeed you get that positive call soon...

Best

T & A Xx

Hello Lucyep,
Welcome to MN - I have no experience of your situation, but I hope, anyway, you will find some support here through the ups and downs,
Do you get any support from the Children's Heart Federation charities?
I will look out for your darling DD on the BHF boxes.

thanks tamula.

lucy, its scary thinking how important this year will be for our loved ones, but what else can we do? i find i am just going with it at, when this all stops (transplant or....) then i know i am going to lose it. last year was hard, peter went on the list on the 14th march, 3 calls in april and may, was taken off in july when he had his LVAD fitted, back on at the end of oct i think, was suspended for a few weeks after a minor stroke, and now back on it. but no calls yet.

I am praying you all get the calls soon xx

I echo Noddy's words and hope that the waiting will soon be over so you can live life to the full with your loved ones.

lucyep I have a very close friend with a 3 yo ds who will need a heart transplant in next couple of years but can't have a transplant until he is around your dd's age (something to do with success/size). Am not sure of the name of his actual condition but he had narrowing of the aorta and a missing valve (??). He had a "patch" put in at a few months old but is rapidly outgrowing it. She was recently told by his cardiologist to go home and "enjoy him". The heartache and uncertainty is emotionally draining for them and family/friends. As with you and misdee their life is at a standstill waiting. My thought are with both of you and your loved ones and I truly hope that you have good news soon.

My thoughts are with you and your little dd. xxx The waiting must be awful.

Next time I'm in town I'm going to make a point of popping into Boots!

lucyep - just wanted to say hi - I kinda knew this would be you as I familiar with you from another site.

Thinking about you all the time and hoping that pager goes off sometime soon.

You too misdee, hope Peter is okay, I'm not around much at the moment as I'm on a crappy dial-up connection that keeps dropping but is costing me a fortune!!

Hi Lucyep! I also just wanted to pop on and say "hi" and offer my support. I am also familiar with you and your dd from another site. I really hope that you get the call soon. I will definately be on the lookout for your dd on the BHF boxes.

Misdee, I am also holding out hope that Peter will also get his new heart. How is he doing right now?

Hi Lucyep
My best wishes are with you (and Misdee too of course).
I lost a baby to hypoplastic left heart a few years ago now.