Hello everyone from the kid on the block

[AJB]

welcome to the site! i enjoyed your post. i had 2 babies one year after another, then 5 days after having the second baby discovered i would need heart surgery within the year! i know how you feel, like nobody understands you or how you feel or what you have gone through. i think everyone thinks surgery makes you "fixed" but for me it opened tons of other problems and worries. now i am faced with possibly not being able to have a 3rd child even though i received a tissue valve. its hard when someone tells you that child birth is no longer an option. i think as a women it really takes a toll. everyone tells me to be happy with the two i have, but i always pictured myself with 5 kids! sometimes i wish i could go back two or three years in to re live life without knowing about this heart problem. i miss living normally.

take care !

Everyone keeps telling me to be happy with the three kids I have and Iam however, when you plan for several months to have another and in a matter of days have the hope and choice to be able to have another child taken away is very hard to deal with. I am blessed to have the three girls but like you have always pictured myself with four or five children.This is what my life is now and I have to deal with it and be strong for my children and husband, it does help to have someone to speak about it with! So thank you for sharing your story with me. Afterall I am still alive to tell my story and to be a mommy to my girls.

 

[AJB]

It can sometimes take a while to get your coumadin level sorted right after surgery, but you are now 7 months post op. How often do they have you testing and changing your doses? If they are doing it too frequently, that's most likely what is causing your INR to go up and down. Have you thought about looking into home testing. You are probably a perfect candidate for it. It sounds like you have some Dr.'s who are following some older protocols when it comes to managing coumadin (or at the very least are extremely conservative in their approach).

I recieved a on-x mitral valve and I am part of an inr study for on-x. MY surgen Dr. Kevin Accola is heading up the study and has asked me to be a part of it. The perks of the study are I get home testing machine I test every thursdsy and call my result in. The reasearch group at florida hospital then contacts my cardio and he calls me back to adjust if needed. I am currently taken 5mg on saturday and 7.5 the rest of week. but that does change every few weeks. as my inr goes up and down. I ahve chnaged my eating habbits to cut out salt and fried foods for the most part but Iam still eating green vegies a few time per week. The one thing the doctor did tell me last week was he was taken me off waraffrin and putting m eon th ebrand name coumadin the reason he gave, four compaines make waraffrin and all my be ever so slietly differant by switching to the brand name it is only made by one company and is always the same formula, he seems to think it will help so I gues we will have to wait see if this therory is in fact true.

 

[AJB]

Thanks to all for the advise and for sharing with me!

 

[ALCapshaw2]

Studies have shown that eating a consistent level on Vitamin K containing foods makes it easier to maintain a stable INR.

I also seems that making SMALL changes in dosage when your INR is slightly high (or low) works better than making large changes. HOLDING a dose (and especially holding 2 doses) when your INR is high is KNOWN to cause most people's INR to "Drop like a Rock". Most of us take 1/2 dose for ONE (maybe 2) day(s) when we have an INR over 5.0

There are several companies that make Generic Warfarin.
Most of us who have changed from Coumadin (which has also had several different manufacturers as the Brand Name was sold from company to compnay) have seen NO detectable difference between quality manufacturers.

BARR (USA) and TARO (Israel) seem to be Excellent suppliers of Generic Warfarin with quality products.

 

[Nupur]

Welcome AJB! You've been through a lot in a short time. But it's over with and you'll be able to enjoy seeing the three children grow up! Never mind the not being able to lift the little one.. as my friend says to me... a bad mom is better than no mom ; ) I always get asked how come I have only one kid and I laugh and say "coz I want to be alive to raise the one I have..". Stick around, there's lots of wonderful folks here who will give you the support you need on the way to recovery.. and you'll be able to cheer other people who cross the mountain.

 

[Luckyguy17]

Welcome to the forum AJB,

Wow, that is a rapid transition in mindset deom considering pregnancy to OHS and the need for pacemaker.

All the best with continued recovery, any idea on length of time of required pacemaker?

Gil

 

[AJB]

Welcome to the forum AJB,

Wow, that is a rapid transition in mindset deom considering pregnancy to OHS and the need for pacemaker.

All the best with continued recovery, any idea on length of time of required pacemaker?

Gil

The electric activity in the bottom half of the heart did not return fully after the mech mitral valve was put in. that was on 6-9-10. On 6-11-10 the surgeon went bak in and put the pacer in. I was told that the electrical activity may come back with time has I heal but as of yet it has not. I use the pacer 90% of time. At this point I get it checked every 3 months my next pacer check is on 2-1-11 maybe they will have good news for me and I won't be using it all the time. But Iam not holding my breath, at this point 7 months later and the fact that the doctor says Iam pacer dependent I think I will need it forever. But then again I guess we always have hope. As a result I have pvc's now as well. that is why I get the pacer checked every three months and not every six. I orginally thought I was having heart palpations but from the pacer they have determined it is pvc's.

 

[Luckyguy17]

AJB,

Thanks for the clarification, bum deal, hope you get good news on visit next week

Gil

 

[Lynlw]

The electric activity in the bottom half of the heart did not return fully after the mech mitral valve was put in. that was on 6-9-10. On 6-11-10 the surgeon went bak in and put the pacer in. I was told that the electrical activity may come back with time has I heal but as of yet it has not. I use the pacer 90% of time. At this point I get it checked every 3 months my next pacer check is on 2-1-11 maybe they will have good news for me and I won't be using it all the time. But Iam not holding my breath, at this point 7 months later and the fact that the doctor says Iam pacer dependent I think I will need it forever. But then again I guess we always have hope. As a result I have pvc's now as well. that is why I get the pacer checked every three months and not every six. I orginally thought I was having heart palpations but from the pacer they have determined it is pvc's.

Hi I don't know if it is any consolation, but when Justin was 10 he needed a pacemaker after going into complete heart block during an interventional cath. He needed ER surgery the next day for his conduit, so they put in the pacer at the same time. He was 100% paced for a while and after about 6 months, his heart started working correctly and he didn't use the pacemaker until his next cath when he went into complete heart block for a couple more months etc. He had it removed when he was 16 and they didn't put in a new one at the time because his first one was under his ribs and they wanted the next one to be in the shoulder area, so since he wasn't using it at the time, instead of basically doing 2 different surgeries taking the old one out and new one in a different spot with new leads, they decided to leave him without a pacemaker until If/when he needed one again. We were pretty sure when he had his next cath or surgery he'd go into heart block, but luckily so far he's had a few caths and heart surgeries since and hasn't needed a new one yet. (knock on wood)

 

[AJB]

Hi I don't know if it is any consolation, but when Justin was 10 he needed a pacemaker after going into complete heart block during an interventional cath. He needed ER surgery the next day for his conduit, so they put in the pacer at the same time. He was 100% paced for a while and after about 6 months, his heart started working correctly and he didn't use the pacemaker until his next cath when he went into complete heart block for a couple more months etc. He had it removed when he was 16 and they didn't put in a new one at the time because his first one was under his ribs and they wanted the next one to be in the shoulder area, so since he wasn't using it at the time, instead of basically doing 2 different surgeries taking the old one out and new one in a different spot with new leads, they decided to leave him without a pacemaker until If/when he needed one again. We were pretty sure when he had his next cath or surgery he'd go into heart block, but luckily so far he's had a few caths and heart surgeries since and hasn't needed a new one yet. (knock on wood)

well his story does give me some hope.Thanks for sharing it means a lot and helps to know others know how I feel. I hope that Justin keeps getting better and does not need the pacer anymore.