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Sarah_Louise

Well-known member
Joined
Sep 26, 2010
Messages
604
Location
UK
Hi everyone,
Just thought i would introduce myself, been browsing this site for a while now, and finially decided to get a membership :D
Where to start lol :redface2: ,
Im 16 and had three lots of open heart surgery's, one of them being an aortic valve replacement,
I was born with the Congenital Heart Defect (CHD) truncus arteriosus-type 2 (with conduit and VSD) and 2 murmurs which was detected at 3 days old, so hence the reason the need for three lots of open heart surgery.
The first op i had was a re-plumb of my heart so to speak and i had this when i was 13 weeks old, but prior to this i was in hospital due to blue spells i was having but they couldn't opperate sooner as i was too small,
My second opperation was a conduit pipe replacement which i had when i was eight years old,
My third operation was my aortic valve replacement, which i had done when i was 13, afterwards i was in hospital for a month,
Due to the AVR i obviously need to be on anti-coagulants, but so far me and them haven't really been getting on...
After my op i was on warfarin, but after 5 months on it, i couldn't get a right level, so they put my on heparin, but as you can't stay on that long term they tried my on another anti-coagulant called phenidione but once again my level wasn't right so back on the warfarin, and after two years of switching between warfarin and heparin i am at the moment on warfarin again (but this morning's INR is 4.4 so not holding out much hope of the warfarin again, but thinking positive ;) )
I am treated at the Freeman hospital in Newcastle, UK and home-test my INR,
Looking forward to getting to know you all a bit more, :thumbup:
Luv Sarah xx
 
Hello and welcome.

I am a fellow congenital heart patient. I was born with tetralogy of fallot. I just had my 4th heart surgery for another pulmonary valve.

Debbie
 
Hi Sarah, My son is 22 and also had a few heart surgeries. He has different CHDs, but also has the conduit from his right ventricle to pulmonary artery. (he isn't involved in any online groups tho) Do you know the name of the surgery you had at 13 months? Justin had a Rastelli and I know they also do that for some Truncus patients.
You might also want to check out the forums at the adults w/ CHD site http://achaheart.org/index.php they have quite a few members in their 20-30 that grew up having surgeries. I know there is also a group for adults and teens with CHD that is based in the UK GUCH I don't know much about it but here is the link http://www.guch.org.uk/

Maybe you should check out the anticoagulation forum here and see if they can help with your coumadin problems. http://www.valvereplacement.org/forums/forumdisplay.php?5-Anti-Coagulation
 
Hi Lyn,
Sorry i have no idea always been told it was a "re-plumb" never really herd it given a name......
Im already a member of the GUCH site, thanks for the link though,
I hope Justin's doing well,
Luv Sarah xx
 
Sarah,

welcome to the forum. Wow, you have been through a lot at a young age and I am sure many here will be able to profit from your experiences. Sounds like you are keeping in good spirit as you forge ahead, and that's a good thing. Look forward to your posts.
 
Hi Sarah,
I had surgery when I was 11 years old for Coarctation of the Aorta repair. And recently for Aortic valve replacement. I can't help much with the Coumadin issues, but I wanted to welcome you to the site. As a welcome gift, here is a photo of Colorado wild flowers for you.
Take care,
John

MtFlowers1003.jpg
 
Welcome Sarah. 4.4 is not terribly bad. Having an active age 16 activity level, diet, lifestyle etc. may make INR management a little difficult. I would suggest that you "push" your ACT managers to let you "home test" on a weekly basis. Hopefully, that may make dosing a little easier and help you stay in range on a more consistent basis.

oops, just read the end of your "thread starter" post and see that you already home test. Try to make smaller warfarin changes which may help with any "roaler coaser" effect. Hopefully, they can get you "squared away". Good luck:thumbup:
 
Last edited:
Hi Sarah,
Whew, lots of surgical stuff you've had. Glad you joined here - I'm sure you'll be a wonderful addition and can help a lot of people. Hopefully, we'll be able to give you the support you need as well.

As a previous poster suggested hop over to the anticoagulation forum and let's see if our collective wisdom can help. It's really helpful if you can post all the meds you're taking, in addition to some inr/warfarin dosage history.
 
Sarah, Hi and Welcome. I can relate to many things you have been through, just many, many years ago! As someone who grew up with a congenital heart condition, it is easy to have no idea what was really done to us as kids. Even now, as a 47 year old woman, I am learning new things that my family were told about my heart condition that I never knew. I would suggest that the next time you go to see your cardio (I do hope you go to see one at least once a year) that you ask him the specific names of the things that were done to you. Right now it might not really matter, but as you get older, and consider whether or not you can have children, and what your future health care needs may need to be, you need to really understand what has been done and what it is called.

I'm sorry you've had so many problems with coumadin. I can't really guide you in that becuase I've only been on it for short periods of time myself becuase I have a tissue valve. However, after reading other's experience with it on here, it seems that most problems with it is due to mismanagement. I bet if you are willing to post how often and how big of a dose change they make some of our more experienced members here could help you become more stable.

I hope you are well and stay well for many years to come. You deserve it after all you've been through in your short life. If you have any questions or anything we can help you with, just let us know. There is alot of experience here.

Kim
 
Thanks again everyone :D
With my anti-coagulant side of it, at the minute i do only take warfarin and Iron tablets as im anemic, but i test twice a week, monday morning and then friday morning, and what happen is i take my INR then i ring my cardiac liason nurse with my INR who then gets in touch with my heamatologist, who then rings me with my warfarin doesage for they next few days, at the moment im on 5mg of warfarin (previously was on 7mg)
Luv Sarah xx
 
Sarah, just a hunch but I suspect the cardiac liaison nurse is telling you to change your dose too much and too often. If you're not already doing it keeping track of the dosage per day and the INR readings is a good way to start trying to figure out where you should be.
 
Sarah. You are a brave and amazing young woman. Welcome to our wonderful community. I know you will be a lovely addition to the support network we have here. I cannot advise/suggest about the INR as my tissue valve does not require me to be on warfarin. But you will find lots of experience here and people who can address your concerns.

Thank you for joining us.

Marguerite
 
Welcome aboard, Sarah :)

Sorry that you had to go through all this at your age, but glad to sense the courage and good spirits in your post.

It is very helpful, as Cris said, to keep track of your dose and INR readings.

Good luck and keep us posted :)
 
Hi again everybody,
My INR dosages come from my heamatologist not my cardiac liason nurse, and i do keep track (have a bright yellow book i've got to fill in) i just do what im told lol,
Thanks again everyone :)
Luv Sarah xx
 
Guys, I think we have to remember she is only 16, so it's probably asking a bit much to expect her to question her Dr's and nurses about her INR care at this point. Some of us on here may have a feeling about what is going on that is causing these issues she is experiencing, but it's unrealistic for us to expect her to do anything about them. But Sarah, if one of your parents would like to get on here and learn more about coumadin from some of our members who have been on it for 20, 30 + years and are very knowledgeable, they may be able to become more proactive in your care so your quit having these wild swings in your INR.
 
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