Hello everyone from the kid on the block

[AJB]

I Just want to say to hello to everyone and tell you how nice it is to have found this site.I am 37 and have had 2 open heart surgeries. When I was six years old I had my first surgery and the doctor told my parents that there would be chance I would need a second surgery when I was about 30. I was healthy and active for years had 3 beautiful girls. My husband and I had been trying for number four in hopes of a boy with no luck.So I went to see my doctor who put me on blood pressuer meds due to high blood pressure.My doctor sent me for an echogram due to the high blood pressure. Two days later I was sent for a TTE and Two weeks later I was sent for a Heart cath and never left the hospital went into surgery the next day! I was in complete shock how did I get so sick so quick? When did I go from getting pregnant to getting a new mech. heart valve. And how the heck did I get to be the thirty year old that needed that second surgery.I feel alone, I know my husband and kids try to understand but they just don't get how it feels to be 37 with a pacemker and mech. heart valve. My life changed in matter of weeks and well I do consider myself a strong person it has been a long road.My friends don't understand why I can't have cocktails with them anymore or why I eat healthy not junk food. My kids don't understand why mommy does not get on that rollercoaster with them anymore or why I can't pick my four year old up (I am on a 10 pound weight restriction due to the pacemaker). But now that I have found all of you I see a light, a group of people of all ages that get me and my life!

 

[Lynlw]

HI, I am sorry things changed so quickly for you. My son is the one that has had surgeries all his life, and also went for a routine cath and ended up in the OR the next day having surgery and getting a pacemaker too when he was 10 so I know how quickly things can change.
Beside this great place, you might want to check out the forums at the Adults w/ CHD org http://www.achaheart.org/ Alot of the member there are around your age and had surgeries thru out childhood, so really understand everything that goes along with that.
Did you just recently have your pacemaker surgery? because Justin didn't have any weight restrictions after his recovery period.

 

[AJB]

My pacemaker was put in 6-11-10. I use it about 90% of the time the bottom of heart does not beat as it should sense the suergery 6-9-10. My doctor has me on
a 10lb weight restriction. I don't know if that is normal or not . But I do still have pain next tot he pacer scar and sometime it is itchy to seems weird to me but I have had apacer check four times sense the surgery and the doctor tells me the leads are ok and the pain is just from the direction of the scar and that it my take several months for it to heal

 

[Kathy McCain]

Welcome AJB!

I think you will find alot of supportive folks, who are willing to share their own experiences with you!

Take care, and keep posting!

 

[buncle]

Well your not alone anymore.We all understand how it feels before and after surgery.Mentally it has its own set of challenges that no one understands unless they have been through it.We just have to remember it saved our lives and we are here today and help each other.Welcome to the family.

 

[Greg a]

I am glad you found this forum ,,,,,,,,Three members already checking in

I have an ICD and the scar or pocket still bothers me with certain weather changes but was also the source of annoyance for a good five months post implantation

WELCOME to our OHS family there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[normofthenorth]

The roller-coaster restriction is just because it's so Yee-Yikes it might be a heart-stopper? Why no cocktails? The effect of moderate alcohol consumption on INR seems . . . moderate if not negligible, and the effect on heart health and general health has been proven positive -- i.e., moderate drinkers (and especially moderate wine drinkers) seem to outlive tee-totallers.

Feel free to avoid junk food and eat the good stuff. And sorry about the shocking and sudden changes, but I am curious about why a few of them are necessary or even appropriate.

 

[Jkm7]

Welcome. Happy you found us.
You've been through a lot and your head needs time to catch up with all that has happened to you. It would be really unusual if you weren't feeling a bit overwhelmed with it all.

When (if) you have the time and/or inclination, try reading the Anti-Coagulation section of this forum. You'll learn there your coumadin manager should be dosing your diet and not having you diet the dose they have set for you. This is for the rest of your life and you can eat the foods you enjoy most and have a cocktail with your friends. You do have to have consistency in your diet and be tested on regular basis to check your INR but your 'fun' has definitely not ended. It would do you a world of good to go with your friends for a cocktail or two if that is what has been your habit. Just don't way overdo it and have more than any of us (either on coumadin or not) should be drinking.

Hope we can help you with any questions.

 

[jazzman]

Welcome, AJB ! You have found a great site for support and information.

As stated above, feel free to ask questions here, and someone no doubt can help.

Best wishes and take care,

Jazman

 

[neil]

welcome aboard

 

[AJB]

I do feel very lucky that it saved my life as well as all of you. I cant imagine my children growing up without a me. I am determind to have a great life for them, it is just hard sometimes.

 

[AJB]

My doctor has told me no more then 4oz of alcohol per week. That may change once my INR is under control but currently it goes up and down.

 

[Greg a]

I Just want to say to hello to everyone and tell you how nice it is to have found this site..................... why I can't pick my four year old up (I am on a 10 pound weight restriction due to the pacemaker). But now that I have found all of you I see a light, a group of people of all ages that get me and my life!

I would ask your EP or Cardio about the weight restrictions ..... was your implantation at the same time as OHS ? I was picking up a 100lb bag of rock salt ( hurt like hades ) and I have an ICD and NO STERNUM ..... people around us really have to understand that we are different but by watching what we do and what we consume we can lead a fairly normal life......every adjustment I make is simply "MY NEW NORMAL" and the sooner I accept that the sooner those around me do the same

 

[kfay]

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).

 

[sylviayasgur]

welcome to this site. as you can already see, everyone here is so welcoming and eager to help. sometimes thing take awhile to heal and straighten out, so try to be patient.
it's always nice to hear that what you are feeling has been felt by others; it can be very reassuring.
be well,
sylvia

 

[Johan]

AJB, just to say that even for those of us who knew about our condition for most of our lives the news that surgery has finally caught up with us, comes as a shock and one gets all bewildered and just plain scared.

The surgery saves and changes our lives and I agree with you that those the closest to us do not always realise and appreciate the subtle changes in our approach to life.

I have a tissue valve so I cannot help you with your coumadin/warfarin issues, but from what I read in this forum 6+ months seems to be a long time to stabilise your INR. Kfay's advice seems very pertinent...

 

[ShezaGirlie]

Hi AJ and welcome! I have to comment on the rather conservative attitude of your cardio when it comes to the 4oz weekly limit of alcohol. My cardio prescribed one or two glasses of wine daily and that was almost 12 years ago. I also enjoy a dirty martini and a margarita or two. I think the *danger* of alcohol subscribes to the notion that if we have a fall and hit our head - that could be bad news. Think smart, drink smart..!

 

[AgilityDog]

I have 2 mech valves, a third valve with a repair ring, and a pacemaker/defibrillator. I drink 4-5 glasses of wine per week. I had my second valve surgery 5 months ago. I have no weight restrictions, although I am still careful lifting heavy things, like the cat litter bag, as I still have some aches. I am still on the lighter weights in my weight lifting/toning routine, but I can heft a 30 pound toddler with no problems.

I will say it takes several months for the pacer pocket to get comfortable, and it can be tender, even after 4+ years, if my dog whacks her hard head on it while giving me hugs! So your kids will have to learn to be gentle with you.

My INR has never been the most stable, as my diet, though healthy, fluctuates every 3 weeks or so on my choice and volume of veggies, and my exercise level varies. I test weekly.
But alcohol consumption rarely makes a difference! Sodium intake, that's a different matter, and restricts my socializing far more than any restriction on alcohol consumption, because I hate the puffy feeling and fluid in my lungs.

I was 46 when my mitral valve gave way, and had about 10 days between diagnosis and surgery, so I understand how overwhelmed and alone you feel. I didn't have time to find this forum until afterwards. I had a lot of damage to my heart due to a delay in diagnosis (you couldn't have a heart problem, you run dog agility!) by my internist. Now, after 4+ years, and my 2nd surgery, I finally feel like I'm "fixed."

But I lead a very active life, and you can, too. It make take you months or even years to "get your head around" all the changes, but we'll help. You can always talk to us.

 

[normofthenorth]

From what I've read (and what others have said above), the relationship between alcohol in moderation and INR is very weak. And its relationship with life expectancy and avoiding cardio problems is clearly positive, up to maybe 2 glasses of wine per day. I drink maybe 4-6 oz of wine avg. with dinner, and take a couple of tiny sips of my wife's brandy afterwards -- and I'm afraid I may be "under-doing it" to get the max health benefits! I was not put on Earth (nor was this website created) to tell you that your Cardio is out to lunch, so I and we will never do that! But it might be worth getting a second opinion, or at least showing up for appointments with a couple of printouts in your hand!

 

[malibu82]

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 !