Ladies Camera Club

19 Apr 2008

Dr Bill Evans

I **think** we have slept off the jet lag.
(She says as her head is doing the nodding dog on the keyboard).
8 hours lag isn't easy to cope with and Belle slept for almost 15 hours the day we got back.
Can you believe she was desperate to get back to school for Friday?
A diagnosis.
Cool. Like, OMG brilliant.
I'm desperately wanting to relay more about that and its name but we have the media watching our every move and I'm not having anyone steal Belles thunder just yet. This is our family news and I have told very few friends what she has too. I think all will become a lot clearer and better once her blood results come through via the genetics team at the Lili Claire Foundation. Once they are in I will be delighted to give you all the low down. There are also more bloods to be taken here in the UK (it is not cheap for blood draws in the US.... in fact its horrendous in cost) as well as blood from Mark and I..... to try and ascertain a genetic fault or indeed a mutation.
Those brilliant doctors in Nevada know their stuff.
They ruled out Coeliac and Marfans syndrome which obviously rules out Turners and Noonans syndrome. Their fix was on Belle all the time - there was so much dedication to sharing thoughts and concerns to us all. It really was a treat to feel involved and advised. We were stunned by the professionalism and efficiency. Which kind of made me feel sad about the NHS. I mean, I should be really pissed. Like, beyond forgiveness. But our system works on little cost and lack of resources - we know this because we have experienced this. But that doesn't count for the poor bedside manner displayed by some of our very own "professionals".
For instance.
The whole history of this condition is quite silly when I read it out or relay it to my friends and family. Infact it makes me laugh sometimes. But I think that is down to the nervy edges around the story. And even though its a he said/she said story.... each word is true. Like - the gods honest.
This noise in Belles chest?
I went to our doctor precisely 6 years ago. My friend Bobby will attest to this. She heard it too. My momma has heard it and so has Mark. Belle certainly can hear it - she points it out to me on occasions. And the Doctors here found nothing. And the squeaks continued, especially when she panicked or got upset. We even heard it in her sleep. So I got second, third and fourth opinions. But nada, nothing, zilch. I even got referred by our own GP (who said he could hear a little something) to a heart specialist here in Wigan.
At last!
And Belle and I walk through the door of the specialist and sat down. And the whole time he stared at us as we made our way to sit. And the look on his face was of disgust. And I thought "Holy cow, he is a very mean looking man". I seriously thought I had walked in naked or something.
So he cleared his throat whilst giving me one huge stink eye and said
"And what are you doing here?".
Remain calm Kirsty, you are here for Belle.
"My doctor referred my daughter to see you".
"And what exactly for?"
And I thought .... duh, hello? Because she has gout in her left foot?
"Our GP heard a noise on Ellies heart and he thought you might like to check it out".
I mean, as if I would just go to a heart specialist myself - without a referral.
And still giving me the stink eye he got snarky and said
"Well I only treat children with blue lips. And SHE doesn't have blue lips".
"Well I know she doesn't have blue lips but she has a squeak on her heart - would you care to listen?"
"No" came his reply. "I think she just makes that noise from the back of her throat. Kids do that".
By then, steam was belting out of my ears and I reached for my imaginary 12 bore sawn off shot gun and hovered over the imaginary trigger.
I begged him to listen and he wouldn't so (rather pathetically) I just started to cry. More out of frustration than anything. And because I started to cry - so did Belle. And when Belle cries, the squeak is quite loud and obvious.
And it was audible alright.
The nurse that was in for the chaperon could hear it and looked at the specialist and the specialist refused to put his stethoscope on her chest wall and said
"That is definitely coming from her throat. There is no way that is coming from her heart".
So I went home to cry into my pillow and try to deal with more people disbelieving in Belle.
And for 4 further years we have lived with 2 more doctors telling us it was nothing.
Who greeted us, slapped the gel on Belles chest, took his ultrasound device and found it in 20 bloody seconds.
And he told us exactly what she has.
And he showed us what it was.
And we could see it.
It was there.
It was really there and it had always been there.
And we were right.
And Doctor Stink Eye should be sent back to med school to realise that even if your lips are not blue, you still could have a heart condition.

You think that's bad?
Then please try and empathise with more horror stories we have encountered trying to understand Belle's problems as well as hundreds of other mothers out there who constantly bang their heads against a brick wall out of pure desp.

Back with pictures tomorrow.
Needs more sleeeeeeeeeeeeeeeeeep.


em said...

I love this post, not because of all the trouble you have been through, but because people in the US don't always realize how lucky we are to have the medical care we do. Now, it's obviously not perfect and insurance companies suck, but we really have it pretty good.

Jillian said...

Kristy, I just can't believe how horrible you all were treated in with all of those doctors not treating Bell. I am so greatful, for all of the people that have been able to help you to get care for Bell here in the states. I am proud to know that she has gotten the care that she needs, and that you all can finally put a name with what you have known for so long. I want so much for your little family to finally be able to have a plan for Bell's future, and for all three of you to have some closure. It just makes me well up when I think about how a doctor could look at Bell's sweet little face, and not do anything for her. She is an amazing child, and deserves all the best that life can give to her. She tries so hard, and I have grown to have a soft spot in my heart for your little one. I think of my two little boys who are just as perfect as can be, and Bell with her sweet little face, and loving little heart, and it's jutst plain to me that no doctor or any other person should ever blow her off and leave her and you all to wonder what next, and will there ever be an answer. God Bless you Kristy, you are a wonderful mother. All children should be so luck as to have you and your dear hubby to love them.
Sorry for going on so
Love and best wishes Jillian

Anonymous said...

oh Kirsty that story just made me cry. I know so well that you have fought all her life to get her the best and you always looked for answers never took a no. For that you are rewarded, you are rewarded for all your years of tears and frustration. I always believe that everything happens for a reason. Maybe the purpose of this all for you was to believe in yourself, stick up for what you believe in although others might say no or be rude in your face. I hope you can see that you can use your inner strenght for yourself too because you my sweet sweet friend are so beautiful inside and out. Ok I stop now...LOVE you !


Jenni Hamilton said...

You don't know me but I have been reading your blog for a little while (can't remember how I found it now,something to do with scrapbooking I think) and have been so moved by your stories about Belle and her condition that I just felt I had to comment. I am so happy to hear that progress has at last been made and hopefully some treatment will ensue, your tenacity has to be admired and Belle herself is an inspiration, I cried when I read about the sponsered walk and how well she had done. Anyway I just wanted to congratulate you all and wish you all the best for the future.
Kind regards

Amelie said...

It makes me SO angry what that doctor in england said to you. i want to beat him.. ugh its disgusting. you should sue his arse. and go to the papers.
its so shocking the gap of care between the uk and america... its just not right.

Heather said...

Just real glad for you all that you finally have a diagnosis.

Kay said...

Kristy, I am originally from the UK, now living in the US so I've experienced the health systems of both countries and while neither is perfect (lots of uninsured peeps over here because it can be very expensive), I am so glad the US doctors have helped, so incredulous you had to resort to a whole 'nother country to find an answer and so frustrated on behalf of all the other people out there who don't have your strength to fight for answers and who may never know what it wrong with them or their loved ones.

It boggles my mind that in the 21st century, a basic human right, such a competent medical care is so hard/expensive to come by in countries that like to call themselves civilized.

Putting my soap box away now...

Rosie (Freycob) said...

Dr Bill Evans is a saint by the sounds of it! He deserves such a wonderful reward in Heaven for helping you to finally find a name for Belle's condition and to get her the treatment she deserves.

Big hugs to Dr Bill!!!!! x

Cazzy said...

Up the revolution Kirsty!

I have had some of that sort of treatment from so called "specialists" myself and have taken myself to a private ex GP and now import my medicine from the USA.

I hope that now you have the diagnosis it is going to be treatable.
The doctors you saw over here should cough up for some of the expense that you shouldn't have had to find to get this for Ellie.

The system here must change, and this sort of story should influence that change.

Anonymous said...

Hi Kirsty

You don't know me but I have been following your blog and am so pleased that you are finally getting some answers.

I am also really angry that a doctor could treat you like that - I work in the NHS and am fortunate to work with some fabulous doctors who would never treat anyone like that. I only wish you could have been under their care.

Good luck for the future xxx

Jen said...

Oh Kirsty, you've mentioned that doctor-who-shall-remain-unnamed before, and I still can't believe it (well, I can, but you know what I mean...). It makes me so angry because there are so many brilliant doctors in the UK and they are working miracles every day on less and less money, and stupid jerks like the one you saw ruin it for all the good ones. Having said that, my GP in France missed my Graves' Disease (overactive thyroid) for a year because I didn't lose weight, instead I gained it. He even sent me to a cardiologist to see why my heart rate was 120 AT REST. And the eejit said "she's anxious". So the GP believed him - even though he'd known me for 10 years and I'd never had a heart rate like that even when I needed anxolytic pills! In France they spend twice as much on healthcare as we do here, so it's not all about money. It's about complete d*ckheads being allowed to continue as doctors. I'm so sorry babe! But doing a happy dance that you have some answers and will continue to do so :) Love ya!

Brook said...

I feel your frustration through the years. I'm sorry that you have gone through this, but I'm sure it makes you see what a blessing has been given to your little family! I am tickled pink for your diagnosis!

verabear said...

Wow, I never would have imagined that that was possible in a country like yours . I mean, I thought people were better off in terms of health care, I mean, surely better than over here. It's so maddening that Dr Evans found in 20 seconds what all those other doctors ignored for so long. If only such professionalism in the health industry be present in other countries too. I mean, I know that budget and technology has a lot to do with it but if at least the doctors themselves can have the training and the information available to them...

Sam said...

first I got a lump in my throat with anger and sadness about Dr Stinkeye, then when I saw the picture of Belle with Dr Nice Guy - that was it, total tears. SO glad this is all working out, it seems like you have lived through one of those horrible dreams when no-one listens or understands that you need help.

the dreamer said...

Hi, Kirsty. I'm an avid fan of yours, not just as a lean, mean scrapper/artist/photographer but also as such a wonderful mom and wife.

I just wanted to convey my sorrow at how long you waited to come to meet this amazing doctor in the photo with Belle. He sounds like a literal miracle come true.

I'm praying for the best for you, Belle and Mark. God makes a way in the right place and at the right time.


Cleo Fitzgerald said...

i am sooo happy that you guys finally getting some where ... I am having a glass of wine to celebrate as I read this!!!

I think that no matter where you go there are those callous doctors who have a 'GOD' complex. Here in South Africa you have to have very expensive private health insurance as our public health care system is virtually non existent ... even though I had been going to a private gyne for 5 years for my annual check ups and I kept telling him I feel like some thing is not right - he said to me "who is the pro here me or you - you are just been silly and paranoid and I think that you should go see a psychologist to get over your paranoia!" Well last year I changed doctors and with in 30 seconds I was told that I had stage 3B cervical cancer and I needed Chemo and radiation and because it was discovered so late my survival rate was only 25%!! When I asked how could this have happened so quick - it was only a year since my last check up? He said really?? This has been here growing for atleast 4 years if not more and was the size of a large hen egg!! How the hell did the other idiot miss that !!!!

So I am thanking God that you have had the opportunity to go to the US and find doctors in the true sense of the word and that Bell is getting the help that she deserves and you get the peace of mind that you need ... GOD BLESS YOU !!

Melissa said...

What a blessing Dr. Evans is, and I'm so glad that y'all found him!! Prayers are being lifted up for your family.

Marja said...

Wow. I'm glad you got a diagnosis and hope that whatever heart condition it is that she has is fixable and life can get better for all of you. Shame on the nasty Dr. It makes me realize how incredibly lucky we have been on the same NHS as you to have had the complete opposite treatment to what you guys have had. It's appalling that stuff can be so different by region. I think every single baby should be given a routine echocardiogram at birth as heart defects are so common, some not serious and others, devastating. We'll be given one this time around b/c of what happened with Noemie but it scares me to think of so many other kids going undiagnosed.

Ellie is a lucky little girl to have a Mom and Dad like you and Mark.

Nancy said...

Wow. Wow. Wow. I stumbled on your blog a few weeks ago and just came back to see how your trip went to the US. I didn't read back to your prior posts about doctors, but my eyes are opened now! I"m going to devour the posts about your visits. I live in Maine, my company just started offering some surgical procedures to be covered in other countries, including transportation and lodging. Stories like this and another I read about someone who brike their leg in Italy (apparently there they expect family to come into the hospital to help care for the patient so this poor woman basically lived in discomfort in a hospital as she was from the US and had no one except the mercy of the nurses). While our health care system is expensive, and insurance is too, the American doctors are usually great (we have bozos too!). I'm excited to continue to read your blog for more of your trip.

And remember, you need to be your own advocate in every health care situation. Good for you for getting where you need to go and continue to read and learn and work with your new docs.

My vote is for the US all the way!

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