Emma
Well-known member
This is the article I wrote for 'Heartline' magazine over here to highlight for other parents, the advantages of home testing INR's (my avatar at the moment has the photo that was included with the article... Emma xxx...
...'I can?t believe it?s over 3 years since I last wrote about Chloe for the Heartline magazine! I have just sat and read through what I wrote back then and it brought back so many memories ? and not many of them good ones! Thankfully, since then, Chloe has gone from strength to strength and is sitting beside me now, a healthy, happy 5 year old.
My reason for updating on Chloe now is to write about our experience of living with a child on warfarin. Since Chloe was started on it at 18 months of age, I have spoken to many parents either dealing with it too or facing the prospect of it and found that the majority of the time, the advice we are given by doctors about it, however medically correct it may be, does not truly reflect what life with a child on warfarin is really like.
I should very briefly explain Chloe?s story again for those who don?t know us.
She was born on 31st October 1999 with a complete AVSD and had her first open heart surgery at Southampton General when she was 6 weeks old to repair the huge hole and to separate her single AV valve into a mitral and a tricuspid. This was only partly successful so in June 2001 when she was just 18 months old and after we came so dangerously close to loosing her, Chloe underwent 3 more surgeries within 3 days, resulting in her own mitral valve being replaced with a 25mm, ?On-X?, prosthetic valve. This was the start of Chloe?s journey with warfarin (or rat poison as the newspapers like to call it!) and beginning of her new life as a ?healthy? child.
Warfarin is basically a drug which slows the blood?s ability to clot. Contrary to popular beliefs, it does not ?thin? the blood ? a misconception I have fallen for in the past too!
It does have some side effects and limitations on what the children can do but the worst of those that I have experienced are the bruises and bleeding. We have to watch Chloe carefully if she bangs her head or stomach nastily as warfarin can cause internal bleeding in some cases. This can also sound worse than it is when described by doctors. Chloe has had her share of bumped heads and tummies ? being the fearing nothing, dare-devil she is ? but after quick trips to casualty and a couple of overnight stays, she?s (touching all kinds of wood!!) been fine. She has also looked like one giant walking bruise in the past too, as warfarin does make the children more prone to bruising. Bleeding takes longer to stop with Chloe, due to her bloods slow ability to clot but with a bit of firm pressure, all cuts, scrapes and nose bleeds stop bleeding eventually.
Another thing we have learnt to consider on warfarin is Chloe?s intake of foods high in vitamin K. This is found in high quantities in green vegetables amongst other foods, but that?s not to say she can?t have them (much to her disgust!) ? just that we watch how much of them she has and make sure the quantity of them she has is consistent otherwise her INR ends up all over the place.
Which brings me to talk about INR and how we deal with that too. Patients on warfarin need their blood regularly checked to ensure their INR (blood clotting level) is within the levels the doctors want. We aim to keep Chloe?s INR between 3 and 4 whereas a ?normal? persons INR would be a level of 1 and children on warfarin for reasons other than a valve replacement would have an INR range somewhere in the middle of the two.
When Chloe first started on warfarin, we had to take her to the local hospital for regular blood tests. These started off at weekly tests and gradually lengthened out to fortnightly, then monthly as her INR became more stable. To say Chloe disliked these blood tests would be a massive understatement. We had screams, nightmares, tears (her and me!) and a one point a HUGE haemotoma on her hand where a nurse did not apply pressure firmly enough after the test! This continued for several months until, with a little help from some friends (namely Hazel Greig-Midlaine and the charity ACE ? anti-coagulation Europe) Chloe had a coagu-chek machine donated to her.
(Coagu-chek is a machine for home testing INR ? not dissimilar from one used for diabetics.)
I initially had problems with getting trained and started with my machine. Chloe?s cardiac unit at Southampton General, for some unknown reason, had decided not to train anyone on its use that didn?t live in Southampton and since we live in Portsmouth that ruled us out. Our GP didn?t agree with its use and the local hospital refused to help me with dosage etc if I insisted on home testing Chloe?s blood. We weren?t defeated there though. In the end, a lovely rep. from Roche, the makers of Coagu-chek, came out to train me and Southampton eventually agreed to help me out with dosage according to INR if I home tested.
Our coagu-chek machine is excellent!!! I have been using it on Chloe for over 3 years now and it?s proved its accuracy more than once when Chloe has had bloods taken at the local hospital to collaborate results.
No more hospital screaming matches, brusied hands, collapsed veins etc etc. Just a quick needle prick and I have the result in less than 2 minutes. Simple!
Don?t get me wrong though, it?s not all been simple, I have had some very ?down? times through Chloe?s treatments and they didn?t stop after the replacement either, but I have now learnt to live with her condition as she does and have long since come to the conclusion that the side effects and restrictions of warfarin are absolutely nothing compared to the life Chloe would have had (had she had one!) without her valve replacement.
I can never stress enough the difference that having that valve replaced made! At her worst coming up to the replacement, Chloe was unable to walk far, she was grumpy and tired, had a cough through CHF and the drug captopril and was getting more and more swollen from fluid due to CHF.
To bring you right up to date now though, Chloe started school in September and LOVES it, she?s very bright, extremely chatty(!!) and is becoming a very keen dancer and swimmer. She doesn?t let her condition rule her life in the slightest and nor do we! She lives life to the fullest and as yet I?ve not found anything I?ve had to stop her doing because of her condition or medications. She goes to parties, plays in the playground with her friends, does PE in school, everything the others do. Obviously as she gets older, there will be some limitations ? piercings, tattoos, alcohol and certain contact sports, but for now we are looking forward to celebrating her mechanical valve?s 4th birthday(!) and Chloe is just enjoying life as any other 5 year old? the future will look after itself.'
...'I can?t believe it?s over 3 years since I last wrote about Chloe for the Heartline magazine! I have just sat and read through what I wrote back then and it brought back so many memories ? and not many of them good ones! Thankfully, since then, Chloe has gone from strength to strength and is sitting beside me now, a healthy, happy 5 year old.
My reason for updating on Chloe now is to write about our experience of living with a child on warfarin. Since Chloe was started on it at 18 months of age, I have spoken to many parents either dealing with it too or facing the prospect of it and found that the majority of the time, the advice we are given by doctors about it, however medically correct it may be, does not truly reflect what life with a child on warfarin is really like.
I should very briefly explain Chloe?s story again for those who don?t know us.
She was born on 31st October 1999 with a complete AVSD and had her first open heart surgery at Southampton General when she was 6 weeks old to repair the huge hole and to separate her single AV valve into a mitral and a tricuspid. This was only partly successful so in June 2001 when she was just 18 months old and after we came so dangerously close to loosing her, Chloe underwent 3 more surgeries within 3 days, resulting in her own mitral valve being replaced with a 25mm, ?On-X?, prosthetic valve. This was the start of Chloe?s journey with warfarin (or rat poison as the newspapers like to call it!) and beginning of her new life as a ?healthy? child.
Warfarin is basically a drug which slows the blood?s ability to clot. Contrary to popular beliefs, it does not ?thin? the blood ? a misconception I have fallen for in the past too!
It does have some side effects and limitations on what the children can do but the worst of those that I have experienced are the bruises and bleeding. We have to watch Chloe carefully if she bangs her head or stomach nastily as warfarin can cause internal bleeding in some cases. This can also sound worse than it is when described by doctors. Chloe has had her share of bumped heads and tummies ? being the fearing nothing, dare-devil she is ? but after quick trips to casualty and a couple of overnight stays, she?s (touching all kinds of wood!!) been fine. She has also looked like one giant walking bruise in the past too, as warfarin does make the children more prone to bruising. Bleeding takes longer to stop with Chloe, due to her bloods slow ability to clot but with a bit of firm pressure, all cuts, scrapes and nose bleeds stop bleeding eventually.
Another thing we have learnt to consider on warfarin is Chloe?s intake of foods high in vitamin K. This is found in high quantities in green vegetables amongst other foods, but that?s not to say she can?t have them (much to her disgust!) ? just that we watch how much of them she has and make sure the quantity of them she has is consistent otherwise her INR ends up all over the place.
Which brings me to talk about INR and how we deal with that too. Patients on warfarin need their blood regularly checked to ensure their INR (blood clotting level) is within the levels the doctors want. We aim to keep Chloe?s INR between 3 and 4 whereas a ?normal? persons INR would be a level of 1 and children on warfarin for reasons other than a valve replacement would have an INR range somewhere in the middle of the two.
When Chloe first started on warfarin, we had to take her to the local hospital for regular blood tests. These started off at weekly tests and gradually lengthened out to fortnightly, then monthly as her INR became more stable. To say Chloe disliked these blood tests would be a massive understatement. We had screams, nightmares, tears (her and me!) and a one point a HUGE haemotoma on her hand where a nurse did not apply pressure firmly enough after the test! This continued for several months until, with a little help from some friends (namely Hazel Greig-Midlaine and the charity ACE ? anti-coagulation Europe) Chloe had a coagu-chek machine donated to her.
(Coagu-chek is a machine for home testing INR ? not dissimilar from one used for diabetics.)
I initially had problems with getting trained and started with my machine. Chloe?s cardiac unit at Southampton General, for some unknown reason, had decided not to train anyone on its use that didn?t live in Southampton and since we live in Portsmouth that ruled us out. Our GP didn?t agree with its use and the local hospital refused to help me with dosage etc if I insisted on home testing Chloe?s blood. We weren?t defeated there though. In the end, a lovely rep. from Roche, the makers of Coagu-chek, came out to train me and Southampton eventually agreed to help me out with dosage according to INR if I home tested.
Our coagu-chek machine is excellent!!! I have been using it on Chloe for over 3 years now and it?s proved its accuracy more than once when Chloe has had bloods taken at the local hospital to collaborate results.
No more hospital screaming matches, brusied hands, collapsed veins etc etc. Just a quick needle prick and I have the result in less than 2 minutes. Simple!
Don?t get me wrong though, it?s not all been simple, I have had some very ?down? times through Chloe?s treatments and they didn?t stop after the replacement either, but I have now learnt to live with her condition as she does and have long since come to the conclusion that the side effects and restrictions of warfarin are absolutely nothing compared to the life Chloe would have had (had she had one!) without her valve replacement.
I can never stress enough the difference that having that valve replaced made! At her worst coming up to the replacement, Chloe was unable to walk far, she was grumpy and tired, had a cough through CHF and the drug captopril and was getting more and more swollen from fluid due to CHF.
To bring you right up to date now though, Chloe started school in September and LOVES it, she?s very bright, extremely chatty(!!) and is becoming a very keen dancer and swimmer. She doesn?t let her condition rule her life in the slightest and nor do we! She lives life to the fullest and as yet I?ve not found anything I?ve had to stop her doing because of her condition or medications. She goes to parties, plays in the playground with her friends, does PE in school, everything the others do. Obviously as she gets older, there will be some limitations ? piercings, tattoos, alcohol and certain contact sports, but for now we are looking forward to celebrating her mechanical valve?s 4th birthday(!) and Chloe is just enjoying life as any other 5 year old? the future will look after itself.'
