My Blog, My Reasons...

I could easily sit here and tell you all how hard it was to realize I was different I am than everyone else all those years ago. Or write about how hard it is to watch people talk to my scar rather than my face. Or even how hard it is to show the people who matter my scars in full (not just the bottom half), or even how hard I still find it to look in the mirror and see those marks that I have to live my life with. Yes I am proud of my scar and i will answer any questions I have about it, but it still is hard to look at them my self or show them in full to other people (anyone with these scars may know what I mean.)

But I do not have this Blog for sympathy and concern, but to offer support and show others that if I can do it then so can they. I am 20 years old, and up until a few years ago, I thought I was so disgustingly different from everyone else, then a very very dear friend of mine had said 'God has given you this as a challenge to make you stronger than you would have been without it.'
'A challenge for what?' I asked.
'Who knows, god works in mysterious ways' was the answer i got.

I thought and thought and thought about this until i forgot about it. Now, sometimes, I like to think that it wasn't a challenge but almost like a path guiding me to where I am. If not for my condition, I would never have gotten to know Donna (www.donnasdream.co.uk) or her husband Az, or Salma or any of the other people I have gotten to know in this "Heart world" and I wouldn't have gotten my chance, through Donna's Dream, to offer support to people going through what I have been through.

Now don't get me wrong, I haven't got much going on a the minute on the heart front, few twinges here and there, but nothing out of the ordinary that needs recorded, but I can honestly say I have been through a lot more than many people, but still not as much as a lot of other people with CHD. If you have read my previous blogs, you will know that I have had 2 Open Heart Surgeries (OHS) and I am due another in at least 6 years, so despite my past health, I am a little less than healthy 20year old.

I have plans for my future that I now know I am going to have, I have achieved 8 GCSE's, 2 A-Levels, and a Level 3 NVQ pass in Childcare. I am a happy person, always having something to smile about, looking forward to my future and enjoying my life at present. Regardless of my past I do not dwell on it, I never make a big deal about how hard it is living with CHD or use it as an excuse that 'disables' me to do certain things. I know my limits as does any other healthy person, and do not exaggerate if I do get a pain or need to sit down, simply because I don't want everyone knowing about it, as other people tend to over react and if I say "I'm fine" I get stupid questions like "Do you need a glass of water?" "I'll take you out for some air" or "Sit down, you'll feel better". At the end of the day I am used to pains and palpitations etc and after 20 years I know how to deal with it, if i need water, I'll ask for it! Haha.

Anyway as I began with, this blog is for support, not sympathy. If you have any questions, do not hesitate to ask.

You can find me on Facebook, "Chloe-Ellen Franks", and I also have a support page on Facebook that I try to keep up with when I can, "Chloe's page - Heart to Heart".

Is This What I've Been Waiting For?

For those who don’t know, last February, over a year ago, I’d had an MRI Scan which would help my Cardiologist determine when I should need my next operation.
I was to go to the Mater Hospital in Belfast. When I arrived, I was to enter a small room where I was to change into a blue gown and have a drip inserted into my arm, at my elbow. Problem was, every time the doctor tried to do it, my vein would move. Once the vein was found and the drip was inserted, I went into the Scanning room with 5 ‘puncture holes’ in one arm and 3 in the other from the unsuccessful attempts with the drip.
I lay on the table where I was explained to that I could listen to the radio through earphones provided and that I would be given breathing instructions through these earphones.

As I lay in the MRI scan, which was like being put into a small tunnel with no way out. I felt nerves, anxiety and fear. I was told I would be scanned for a period of 30-35 minutes. Every now and again as I lay there, I convinced myself I had only been laying there for about 10mins, and this was why it felt like I had been there all day because I was bored. Every now and again I would hear the voice int the earphones telling me to “Take a deep breath … Hold … Exhale slowly … 3 .. 2 .. 1″ It was tough holding my breath for more than 10 seconds, but I did it.

I came out and hour and a half later feeling tired, drained, hungry and emotional, you see, I’m not good with needles of any kind, so being the big baby that I am, I cried that it had taken 8 attempts to find the vein.

Anyway, since that day I have been waiting for the results. I started to get very worried that it had been over a year since I had heard anything regarding the results so I rang the hospital, the secretary told my that my cardiologist would be in touch.
On Friday, I received a voicemail;

” Chloe, its (cardiologists name) here, calling from the children’s hospital, I have your MRI results in front of me, it’s actually a better results than I could have anticipated, so it’s good news. I understand you are coming in July, we don’t have to do anything until then. We will use MRI scans again as it is a better way to monitor your heart, if you have any queries before July I would encourage you to contact me directly. I will be writing to your GP with your results and will be sending u a copy. Okay, thanks now, bye. “

 Oh my god. Did he just say that? Did he just tell me there better results than expected? Did he just say its good news?

Yes. That’s exactly what he said. I have to say they were the best damn words in any voicemail I have ever listened to. This is truly the best news I have got in a long time. I told my nearest and dearest and they shared my joy, I may finally be on a good road to recovery so it seems any way. 

Pimped our for the BritishHeart Foundation 

I just wanted to share this good news with you to show you that things that seem bad can ALWAYS turn around and start looking up. I was expecting to have my next operation within the next year or 2 but these simple words have gotten my hopes up… Maybe my zip won’t need opened so soon  . I am so happy these words have meant so much to me, they are words I was beginning to think I would never hear. Hard work and determination does pay off. Always look at the good from a bad situation and never let CHD get you down. It’s a learning curve and a special life that you were blessed with because you are strong enough to live with it :)


(Updated 03/09/12)

So I went to the Hospital in July and I saw my new cardiologist. I must say it was a VERY good meeting, Although my Weight had gone down from 53kg to 49kg, my Cardiologist gave me some amazing news. He told me that there is no need to worry about any operations just yet, that i have at least another 6 years until I need to even think about any operations or surgery. So my health is on a roll! Im that healthy i have no need for an operation for at least ^ years. MAYBE MORE .. So So Happy, never thought I would hear those words. Poor man had to Watch me cry as I tried to express how happy he had just made me, my mum was speechless, but it was a very very good day. 

6 More Years! YAAAAYYYYY :D.

SCARRED UP GENERATION: 2 SIDES TO EVERY STORY. | Salma's Scarbook

Chloe: My Side Of The story

Being as young as I were when I was given the gift of my scar, it took me a few years to realise that it wasn’t ‘normal’. I would like to ask you, what is the definition of normal exactly? But when I did realise that it wasn’t ‘normal’ as it were to have a gash down the middle of your chest, I was proud to be different in Primary School, telling my friends that I had “a poorly heart”. Then, as I grew older, I caused me great distress that it were so different. 

I was given a fairly good roll in my P7 Christmas play, but then the teacher took it away “I don’t want to cause you any unneeded stress” were her words. I hated the thought of this, but who was I to tell a teacher?

I used to sit in the Children’s hospital waiting for my consultation. Never feeling the need to overly hide my scar, I would have it on show. Parents of younger children would look at me, then my scar, then to my mum and dad, giving them a sympathetic look. Mum would smile back. I couldn’t quite understand why other parents were sympathetic towards my family and me, as I knew exactly what their children were going to go through. I have been through it and survived, no need for sympathy there, mu, dad and I knew what they were in for and the distress what O.H.S (Open Heart Surgery) had in store. What really got to me was the amount of young babies that were there. And this was Just in the cardiology outpatients department. There are tons of babies, from just a few weeks old going through the same procedure of an E.C.G, Echo and consultation. All that I could think was these poor babies have no idea whats going on. I just wanted to hug them. It seemed so unfair.

After my second O.H.S I became very aware of  the implications of what my scar had to offer. I was unable to go shopping without people looking. I could tell by facial expressions alone, no one had to say anything. Most never even made eye contact with me, they seemed unable to look me in the eye, this made it worse. I never wanted sympathy but I never wanted anyone to avoid looking at me as if I had a disease and if they looked into my eyes they would catch it.

My sister once said “Chloe, I’m gunna crack up. Everyone keeps looking at your boobs and down your top. Like F**k sake!” It was then that I told her “Don’t be silly. Its my scar they’re looking at, sure my top isn’t low.” “Well they should mind their own business.” Was her reply.

It really hit home that day because although I always knew that my scar caused attraction, but saying it out loud, and having someone else pointing it out was daunting. I started covering it up. I tried a lot of oils from the chemists and various make up products specialized for scar tissue although nothing worked for helping the appearance of my scar other than the make up. I used this for special occasions, but as u can imagine, so far through the day it wore off. Nothing seemed to work and so I considered a skin graph through the NHS as I knew this was a possibility. After some thought I realised there would be no point going through surgery for a skin graph and what not as I have to have my scar re opened and it would cause more bother than anything else.

As I matured, I thought f**k it, I’m not hiding nothing for no one. If its warm, I’ll wear whatever top I like to wear, if people don’t like it then they shouldn’t look at it, I have nothing to be ashamed off, I have something to be proud of! If not for my scar I wouldn’t have the opportunity to explain all of this in my blogs and feel this pride for how I have lived through more than most people can deal with. Therefore, I learned to live with my scar with confidence. I grew to realise that it is a part of me. I wouldn’t remove a finger or my arm so why would I remove my scar?? I have grown to love my scar as I have matured, the same as you would love a member of family or a new friend. I wouldn’t change it for the world. It is who I am. I have no birth marks that distinguish me to other people but I have my own mark, one that has a whole story behind it.  My family always told me to be proud of my scar, but I think it takes an  “outsider” to tell me this for me to think “You know what, you’re right!” I now wear my scar with more pride than ever, also, thanks so much to our angel Donna and the Amazing Salma who have also shown me that although my scar can be shocking to most people, it will never be shocking to the important people  . I have received a little hate mail considering my scar and it hurt to read it to begin with but when I opened up and told a dear friend, The lovely Salma*, she told me that she had also received awful comments due to living with both a Heart Condition and her scar, that’s when I decided to add a little more to a previous blog of mine and I have to say, the support was amazing, I would like to thank every one for their support in this way.

Today, Living with my scar is me. I am proud of myself for going through and dealing with what I was able to deal with because there are few people who would have been able to. 

Salma’s side of the the story:

The most common thought associated with having any form of life saving and changing surgery is ‘the Scarring/Scars’ that r left behind. People don’t want to be blunt in words about how horrifying it must have be to live with ‘it’. Well that would just be suicidal (to them) whether you’ve had an operation as I have had or the gorgeous *Chloe* has had. When I say anything about having the procedure most of the responses have been ok because I have felt comfortable talking about it but in the past this wasn’t so. Most people that I would talk to about ‘the scarring’ would not dare say anything but in my opinion they didn’t have to, there look just gave it all away of screwed faced repulsion. I’ve grown up since then and now it’s their own insecurities and ignorance against CHD and transplantation that makes them react in such a way. The frustrating thing then though would be they’d never tried to hide their disgust from me, just because words weren’t giving them away it was fine and dandy.

Wasn’t it?

But I could see there facial expression.

It spoke louder than any words strung together to make a sentence.

All I could think is that I know exactly what you’re thinking because I’ve thought the same.

For the initial first weeks after the transplant me and my family had all been on eggshells hoping that everything would go smoothly. You see our family has a habit of being hit with a lot of bad luck. So sitting in clinic (at the hospital) to check all was ok I started to look at all the people walking by, a sea of people and me amongst them feeling quite inadequate in this position that I’d been placed in. I noticed that a lot of the people (women especially) wore tops that showed what looked like to me at the time a pink candle wax effect like pigment poking out of their chests. And to be honest it horrified me. My first reaction of thought to this as a month old tranny (a name I refused to associate with myself) was ‘How can they walk like that? Showing ‘it’ to the world?’ I’d tightened my coat over the top half of my body. I think a lot of my insecurities started at this point about my body image and this revelation had just taken me over the edge. I think about this scenario and now think that I was jealous, jealous that these people had the confidence at just accepting and embracing there scars.

But the truth is these thoughts have cursed me ever since.

I’d become increasingly panicked by the scar and the mark that it had left on my skin. I began to find ways of eliminating this ghastly scarring on my chest. It didn’t help matters that I scar very easily. And so began my journey into trying different methods to try and get rid of ‘it’. Out of sight and mind I guess. At first I tried being ignorant toward the scar, not acknowledging it or anything to myself anyway. When I’s explain all the scaring to my mom my brain would switch off and id have no feeling towards the scar, I’d just explain what it all was in medical terms because that’s all it was, explaining it that way was me separating ‘me’ from the scar and I think now to what had happened surrounding ‘it’ because that’s what the scar represented at the time, all the bad things that happened in a space of 1 ½ years. I treated ‘it’ like it was something outside me and that was my way of dealing with it. And then it was not looking at ‘it’ avoiding eye contact was vital because then thoughts would conjure up and this would upset me to the point of no return. When looking in the mirror, my eyes would stay on my face and go no further. But me still not being satisfied with just being ignorance I decided to take matters into my own hands. Looking at others forms of treatment to cure ‘this thing’ that was taking over my life.  I sort comfort from ads promising that scarring would vanish with the use of their oils creams etc. until I found just the cure! The answer to all my insecurities to be diminished, a certain oil which I won’t write down because of copyright and such like! So I promised myself every night without fail (well some nights mind!) I’d get the potion as it were. I’d get the bottle, pour it on my hand as if it was liquidised gold and smother it onto the scar. Two months on and to my disappointment it didn’t work, my thoughts were what a waste! Thinking that all my hopes had been dashed, I had cursed myself and now I had to live with it. I don’t think all the talk in the whole world would have changed my mind, I was stuck looking as I thought as a freak forever. So then one day chatting to a friend, she’d make a comment as frivolously said

“If I had a scar I just wouldn’t feel comfortable with it”.

This made me feel a little hurt and then angry after the conversation, I looked at my scar stroked it and noticed how soft it was. It was hot in the house and the internal stitches where the scarring is on my chest started to sting (this is actually a little but painful I have to say). Putting my hand over my chest trying to soothe the scar of the pain as a mother would to a baby the pain subsided. Looking over the dresser at the ‘potion’ picked it up almost feeling guilty of the hope that I put into this little bottle. Staring at it I thought

“I’d rather have a scar that symbolises everything I went through than there be no scaring at all.”

I Eventually Want Children But CHD Is Holding Me Back

To be honest, the people I know, including my self never really thought id live to do my G.C.S.E’s, but, obviously, I have. I passed all 8, I have A-levels, two I have passeed, one of which being something that I thouroughly enjoy as a hobby, and I have passed my Level 3, NVQ in Childcare.

I never wanted to do Childcare as a youngster, I wanted to be a singer (like all other little girls), then I wanted to be a vet because I always thought I had a way with animals, but after I had turned about 15 I realised that my possibilty of having Kids were slim.



Honestly, I didnt really feel much attachment towards my younger family, nieces and nephews, dont get me wrong, I loved them all to absolute pieces, I just always wanted to do other things like run about outside and climb scaffolding at the building site around my estate. But as I grew older I knew deep down inside that I would always want my own baby some one to love me just as much as I love them, some one who wouldnt judge me for who I am or what I have been through. At the age of 3 and a half I was told by the doctors that I cant have children due to my heart condition, then after my second operation I was told that there was a possibilty but it would have to be reconsidered at each hospital appointment every 9 months, then, in July of 2009 I was told that I am able to have my own Children with the extra care of professionals throughout pregnancy, then in March of 2011 I was told that I would even be able to withstand a natural birth so you can only imagine the Joy that was going through me when I am hearing this, something that I never thought I would hear.

Artist of the week during first year of my A-Levels

During my Last year of my A-Levels, when I  was about 17 I realised that I really wanted to have a child, at the time it wasnt a possibility so instead I wanted to something that I thought would kind of, fulfill my want for a child, and obviously, Childcare came to mind. So I finished my A-Levels, and went to College and studied NVQ Level 3 in Childcare, I loved every minute of it, I did placement in a Childrens Nursey working with babies from about 4 months old, to children the age of 12. I must have done a good Job as i got place in the Nursery at working level when my course finished. I love every minute of my job, yes there are ups and downs with my job, health wise, both physically and mentally, but it is very enjoyable, with the children you need to have a lot of patience otherwise oyu would be pulling your hair out half of the time haha. It’s easy to feel under pressure in any work place, but as most of you know, feeling the pressure is a different matter when you have a heart condition, or any other health problem as u feel it 10 times harder than the average person. Simple tasks such as lifting a child, or pkaying football with the children are quite daunting as running or jumping can leave me breathless and add to the palpitations, whilst lifting to quickly can cause me to go light headed. This is something I will need to speak about at my next appointment with my cardiologist but I dont think it’s too worrying considering all my poor body has been through haha.

To look at me I know that you wouldnt think I am ill, and Honestly a lot of the time I dont feel it, but when I am working or messing with my nieces and nephews, (who I love to absolute pieces by the way), or even laughing, I do sometimes feel the difference health wise, with silly things such as breathlessness, palpitations and dizzyness, it all takes its toll, so I need to remember to take my time and enjoy what I have without trying to rush it, good things happen in time, if we had everything handed to us on a plate we wouldnt appreciate them when we try for them.

My Scar Makes Me Who I Am

So everyone has something personal that makes them who they are, be it a birthmark, or a mole, mine just so happens to be a scar. Yes you read that right, but not just one Scar, I have four. One right down the middle of my chest, measuring roughly 21cm, then i have three small scars, about an inch in width below it. These are from my 2 previous operations and I’m positive i have more to come. This blog IS NOT a sympathy vote for how i look, but to show everyone that yes, i have them and they make me who i am.

People, to my dismay, notice it all the time. It’s hard for me to go shoppin without someone looking down at my chest. God know’s I’d look if it were something I didn’t recognise. I dont blame people for wondering, and i do feel privileged when asked on it, when they recognise that it’s a scar.

It is hard living with it, growing up I wasnt as aware of it as I am now as its something I’ve had since my earliest memory. When I was a child, and was asked about it, i would simply say “It’s my Zip” and smile politely.

But, I have had some people look at it and think of it to be something else. A girl once told me that I should “Keep an eye one that rash incase it’s contagous” Me, not being as mature as i am about it as I am now, looked away from her, told her it was a scar and walked on. I didn’t know whether I should have been angry for someone assuming that it was a digusting Rash, or whether i should cry, it hurt me to meet someone who was ignorant to what some people live with, for judgeing. But, I held my head up high and got on with my business. Although deep down i felt that hurt and annoyed i knew that crying or going mad wouldnt make the situtation better, it would just create more fuss around the situation, which i was trying to avoid. Later, she did apologise and we put it behind us.

Another time, just a few weeks ago, while I was waiting for the bus, a man approached me and said “Woah, did u try to cut yourself?” not understanding what he meant i looked at him puzzled, when he indicated to his own neck, my heart sank when I understood he meant my Scar, shocked, i didnt know what to say to him, I told him that I had a heart condition and had undergone 2 operations. “At your age??” was his responce, not knowing how to react to this comment, I said that I needed to catch my bus and walked away.

Now, after knowing a dear friend, God Rest Her Soul, I am aware, that people like me, who have had both full transplants, and like me, homeographs which is like a transplant of one part of an organ rather than the whole organ, are here to show that no matter what is going on with us, we must not dwell on it, we should thrive, and make the best of a bad situation. When approached by  the two people above, I should have explained my situation and thanked them for their concern, and bidded them good day, but like everything else, I dont think of these things untl the moments past  ..

But what I really wanted to say is that Yes, my scars can be daunting, and of course i have days where i feel that I hate them and don’t want them there, but do you know what, if i didnt have them I wouldnt be who I am today, if none this hadnt happened I wouldnt have my blog, as i do now, and i wouldnt be organising my charity event or have the plans I have today  ..

By Chloe

(Updated:7/5/12)

I had been through an odd job interview, first thing I was asked was “wow, how did you get that scar?” so I explained that I have a heart condition without using the words “chronic heart disease”. The whole interveiw, which lasted about an hour consisted of being asked about my condition and when my next operation is, how long ago was my last one, blah blah blah, followed by one or two questions of my work ethic. I was told at the end of the interview that I would recieve a phone call by the end of the following week. I never recieved this phone call. I would like to think that this is because I had my phone switched off or because I had no signal but I know it was not. Inside I know that it is because the employer didn’t want to have to ring me and say that I havnt got the position and when I ask why not not having a reasonably excuse. I had all the desirable qualification and experience required as well as the essentail criteria, I also had outstanding references as my resferee’s told me of this. Is it right that anyone with CHD should be discriminated against due to their label? I dont think so, I think that if I wasnt able to work due to CHD I wouldnt, I am well enough to work so I will work all I like. Also is it right that i should have to cover up my scar in order to have a normal job interview? If I were to say nothing about my heart condition and covered up my scar, surely that would be false advertising?

Also, I have recently recieved hate mail due to being proud of wearing my scar, for supporting organ donation, and for sharing my story. I would like to take this opportunity to say a few words on this matter. Without sounding too harsh, I am who I am. I have been through hell and back to get the life I have been blessed with, my scar shows that I have been through a personal war and my smile shows that I have won the battle. Although I have not had a full heart transplant, if not for an organ donor I would not be alive to share my story. I agree with Organ Donation 100%, I support it and promote it, but i would never force it on anyone. If you do not agree with organ donation i would appreciate that you either think about my life, do u think I didnt deserve a second chance to share my story, and if not then please do not waste your time in contacting me to tell me that I am a “disgusting person who should not parade a horrible mark for the world to see” (meaning my scar). Please do not tell me that it is wrong to tell people about my own life and how I have coped living with a “disease” because I have shared my story to offer support to those who are going through the same situations and for their families to understand how their loved ones may be feeling even if they try to hide it. I have been called an inpiration for having the courage to speak up and help these families, just think, how many time has someone called you an inspiration?
Also, (if u are squeamish then dont read this part) I would especially appreciate if you would not share your thoughts on how u hope my scar “opens in my sleep so that my “deformed” heart falls out.” One, I know that this is not something that would happen, and two, I already have nightmares about this but the sheer fact that you have suggested this makes me realise that it is something that would only happen in the movies. You are the sick one, not me.
It is people like yourself that give me even more drive to share my story, to promote organ donation and to wear my scar with even more pride. Simply because it is you that is the sick person and not me, I am who I am . If you dont like dont speak to me, if you dont like what i have to say, dont listen and if you dont like what I have to write, dont read it. Simple 

I am sorry if anyone finds these last paragraphs offensive, but it is something that I needed to get of my chest, (so to speak) and get it out of my sytem so I can focus on the tasks ahead. Thank you for all of the support guys and dont forget, what doesnt kill you makes you stronger 

Living with CHD, From the beginning

Hi, my name is Chloe Franks, I am 20 years old, I work as a Childcare worker, I love to Dance, Horse ride, go to the swimming pool (and try not to drown..) and do more, all of which, from the age of 3 and a half I was told I should never do.

I was always told, when growing up not to do any exercise, other that walking short distances when needed. I have never participated in any Sports day activities other than watching from the side line.

The reason being, I have a CHD. One of which I was born this. It wasn’t until I was 13 weeks old that my mum was told I had a heart murmur. My mum knew something wasn’t quite right with my heart murmur. After years of my mum being told to stop being silly by the hospital nearby, she went on to Oxford Children’s Hospital when I was 3 and a half years old. I was took to the hospital and given an EKG on a Thursday, and nothing of significance showed, then, the next day, a man came to mums door saying that I had an appointment in Oxford Hospital on Tuesday, and giving mum a bottle of Propananol with instructions for giving me it. We went to the appointment and that Thursday I Had surgery to correct a Sub-aortic Stenosis.

This Operation was only a temporary Measure as I was to grow and the Surgery would need to be corrected, so on the 27th October 2003 just 4 days before my 12th Birthday, I underwent a Ross Procedure.

The Ross Procedure is a type of specialized aortic valve surgery where the patient’s diseased aortic valve is replaced with his or her own pulmonary valve. The pulmonary valve is then replaced with cryopreserved cadaveric pulmonary valve. In children and young adults, or older particularly active patients, this procedure offers several advantages over traditional aortic valve replacement with manufactured prostheses.

So, now I am 20, well alive and kicking, I am awaiting word for my 3rd operation, but I still have about 2 years to wait.

I always wake up in the morning and forget that I am different to other people, it’s only when I look down and see my scar or as I used to call it, my zip, that I remember what I’ve been through. This is not a life I would wish for anyone, but this is who I am. Yes, I get fed up having restrictions, but the restrictions don’t last forever, I was always told never to exercise and now I walk up the mountains, I’m trying to pluck up the courage to learn to swim, I’m horse riding, I’m dancing, and I’m working. I can honestly say that I am Happy with who I am today, and this goes with an ABSOLUTE MASSIVE THANKS to my mum Tasha, and my dad Mick, for all my Sisters and my brothers for supporting me, a special thanks to my best friend Cat who has been through the most of it with me and who gives me the kick up the backside I need to see the light sometimes.
If you want to become and organ donor go to: www.organdonation.nhs.uk.

Az – Chloe has also started her own facebook page for people who suffer with CHD which you can find here : Heart to Heart