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KarenS

Hi Everyone,

I have been "peeking in" through the window on this site long enough and decided to introduce myself. I have been amazed at the stories I have read and all the information and support this site seems to offer so many people. It feels a little strange to me to poor my heart out (so to speak) to people I don't know, yet I feel at ease and comfortable knowing so many of you are going through/have gone through a similar situation. Here's my story (as short and sweet as I can make it):
During a routine exam with a new MD, a "murmur" was detected and I was refered to a local cardiologist. I was diagnosed with moderate to severe aortic stenosis. I had no symptoms, had been teaching aerobics for 8 years and running 3-4 miles a day at that time. I was told at that time that more than likely, way down the road (or maybe I chose to hear the "way" part) I would need to do something about my valve. I thought about my heart very little and continued to lead an active life. This diagnosis came in 1997, the same year I got married. Fast forward to 2000, first baby boy is welcomed into our home (still no symptoms, seeing Cardiologist and getting echos yearly). 2003, second baby boy and still exercising, feeling great. During my third pregnancy in 2004, I was thrown quite the curve ball. During my forth month it was detected that my stenosis had taken a severe nose dive and I was in need of intervention to survive the pregnancy. I had aortic valvuloplasty performed in October 2004 and by the grace of God and at the hands of an amazing MD (second and third opinion docs were not as hopeful and recommended pregnancy termination or valve replacement during pregnancy-only done 16 times previously in pregnant women at the Mayo Clinic). Third beautiful, healthy baby (baby girl this time :)) born Feb. 2005. I have always known that my valve would eventually recalcify and now I am back to the point were it is time for surgery. I meet with the surgeon on the 25th of this month and plan to have my valve replaced this winter (my cardio. is now recommending it/surgeon I saw in the summer recommended surgery then.).
I have a 6, 4 and almost 2 year old. A little more than frightened about the post surgery time and three little ones to take of. I have an amazing husband who will get time off work and family members who will help out. But as you other moms out there know, no one can possible do what I do, right??
I have some surgeon questions and valve selection issues that I will post later, as I have gone on long enough.

Karen
(there are two Karen S's on the member list...I am KarenS, no space. Thanks for reading my not so shocking anymore story).
 
Karen. Welcome to our wonderful and very special community!

Thank you for sharing your story. Wonderful that you were able to have 3 healthy babies. I'm 53 and my babies are all in college now. I went through all 3 pregnancies knowing about my condition but fortunately with no problems. You have the "perfect family".....like me!! 2 boys and a girl. :D You will have a wonderful, long life with them.

Please feel free to ask any questions that you have regarding your upcoming surgery. Start a new thread each time, that way more people will see the actual question or concern.

Sounds like you are in good hands all around....and certainly so....now that you've found us!!

:) Marguerite
 
Nice to have you here. Glad you came out of hiding.

It's a big jolt to find out it's actually time for OHS. You must have been scared when you underwent the valvuloplasty. There can be so many conflicting consultations. But you went ahead - good for you.

As far as the children and recovery...

Please be aware that you cannot handle any small children for at least four to six weeks after surgery if you have the standard full sternotomy. Period. It's because of your rib cage healing, and it's not negotiable. You can pat them on the head, kiss them, scold them, but you cannot pick them up, hold them in your lap, do or fold their laundry, or pick up after them.

You should not be chasing after them either. While exercise is good for you during recovery, children use up much more energy than you will have for a while. You won't be much good to them down the road, if your heart doesn't get its chance to heal properly when it needs to. You can't catch up on healing later. It just doesn't work that way.

Look for some help during your recovery. It may be difficult, but you will very likely hurt yourself if you don't.

Note: Toddlers placed by others on your lap will have a penchant for slamming their heads back into your chest. I don't know how they know you're vulnerable, but they do. Many reports of painful encounters of that type.

Best wishes,
 
Welcome Karen...

Welcome Karen...

I'm sure you will find the people here most helpful Let me know if theres anything i can do. -- joe
 
Hi Karen! Glad you decided to join us!

Listen to what Bob says, NO picking up those babies! I even found wiping the countertops too much for awhile. I'm still milking the help I have here!

Please ask all your questions, don't be afraid....have they given you a timeframe?
 
Welcome, fellow Michigander! This is really a wonderful place, since everyone gets it about this heart business.
 
Hi Karen,
Please listen to what people are saying and get plenty of help. It is much better to be a barely mom for a few months than for your precious little ones to lose their mom prematurely. Make a plan. For everyone who says "let me know if I can help" - have a job for them. I know moms are lousy at taking the help, but you will need it. It will be an eye opening experience to see the people that you can REALLY rely on. It is a wonderful expression of the love that they have for you and it will be a wonderful bonding experience for your whole family. Don't forget to enlist the kids help. You will be amazed at what they can do at that age. It will also make them feel special and needed.
 
Karen -

Welcome! What an amazing story. You are very lucky to have your three healthy babies, and you must be very brave.

My "babies" are 14 and 16 and they are about all I can handle right now at just under 2 weeks post op. I wouldn't be able to handle young ones right now at all.

Yes, you will need help, listen to what Bob says.

Welcome, thanks for coming out of hiding, nice to 'meet' you.

Ruth
 
Like Ruth, my babies are 14 & 16; however, at the time of my surgery, they were 5 & 7, about the age of your oldest two. Kids that age are pretty independent and love doing things for mom, so let them help you. Teach them how to fold towels, make beds, sort laundry, etc. They also understand that mom doesn't feel good and seem to be extra good (at least mine were). The younger one will be a bit more difficult so make sure she attaches to your husband or another adult really well before the surgery. Most kids that age prefer one parent over the other - usually the one that is the primary caregiver - and don't really take very well to strangers. It's scary for them to have mom sick, and to be thrust onto someone they don't know very well makes it doubly scary.

You are young, so you should bounce back, and you may even feel really great after a week or so (I did), but you do need to take warning about lifting heavy things. I could hold my niece, who was born about 6 weeks after my surgery, but anything heavier than that would have been excruciating. The sternum will also heal better if it's not twisted and turned.
 
Welcome Karen; glad you joined the site! Do you know why your valve became stenosed?
 
Karen,
I know that you are scared right now. You are trying to figure out who is going to do the grocery shopping, bill paying, vaccumm. Plus your little babies. People are also filling you with the "what ifs..."
I just had an AVR 8 days ago. I have 16, 13, and 8 yr old children. You have to make arrangements for someone strong to come. This person needs to be able to keep the kids occupied during your frequent naps and care for the house. You'll want to pick up their toys and hug them when they are hurt. You can't
A relative or friend will be a true asset. It's hard as women to admit we are vulnerable and can't care for our families. You have to care for yourself. Your neighbors will offer to make meals for you. Let them.
Please know that you have a new group of friends here who are ready to support you as you go through this roller coaster ride. We know what you are going through. Please feel free to contact anyone with questions. Read some of the old presurgery threads to prepare your home and ask a ton of questions.
Many good wishes to you!
 
Welcome Karen! Your story is somewhat similar to mine. My mitral valve prolapse was diagnosed shortly after I was married (we're talking a few months) and it was flagged during a routine exam. I had a miscarriage and then a healthy, no-problem pregnancy with our son. It was during the pregnancy with our daughter about a year and a half later that my valve took a nose-dive. To give you a time frame, my daughter is now 21. Back then, doctors seemed to wait a lot longer before replacing a bad valve in a young adult. I didn't get my valve replaced for 5 years after the start of problems. I was 32 at the time. My children were 5 and 7. I was very debilitated prior to my surgery, so I welcomed it happily. Fast forward and now 15 years later I look back on a trouble-free time of raising my children, enjoying all the many activities I ran them to, traveling to Europe twice and now I'm a grandma!

This news is scary and worrisome at times, but the good news is that you have the technology at hand to live a very healthy life with a replaced valve.

Best wishes.

PS - I almost forgot to mention one of the biggest perks of all that wasn't available to me at the time of my replacement - You can become a member of the Divine Order of the Tawdry Shirt. :D
 
Welxcome to VR.com. Glad you've joined us. My kids are teenagers are pretty much self sufficient and were great helping around the house while I was recovering. It took OHS to finally get them doing stuff without being chased down :D

You'll need to arrange some help with your young ones post -op as it'll take a few weeks to heal.

Best wishes,
 
Karen,
Welcome to our group! You'll be fine! I am 53 and have three children, aged 24,22 and 16, so I was fortunate that they were old enough to take care of themselves when I had my double heart valve replacement in November. My 24 year old son lives in Rhode Island with his girlfriend, while my 22 year old son and 16 year old daughter are home with us in Upstate New York.

If you have someone to help you and your children, you should all be fine. You can probably expect to spend a week or so in the hospital and a couple of months recovering at home before you'll feel almost up to doing most of the things you are used to doing. I'm wishing you all of the best. You have stumbled onto a great support group. Marcie
 
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I'm glad you joined us, Karen.:)
 
Welcome,Karen.
You've found a wonderful place with loads of helpful, knowledgeable people. I'm Evelyn whose husband, Tyce, had AVR in June '02. I know I've learned MUCHO from everyone here. Please feel free to ask anything.....you'll get loads of answers.

Sorry I can't help with the kiddos, but I do rather agree with everyone here....this has to be YOUR time, for YOU to heal and get better for them.

Again welcome.

Evelyn
 
I also want to welcome you Karen! Ask away and the people here will help you. I am in the "waiting room". Surgery scheduled for Feb. 9th. This site has helped me more than I could say. It will be more difficult for you since you have small children, my 3 boys are teenagers. Get lots of help. You are in my prayers!
 
Welcome to our world Karen.

As a former Michigander, I'm curious where you live.

Have you selected a hospital and surgeon yet?

If not, the two best places in Michigan are Beaumont Hospital in Royal Oak and the University of Michigan (Go Blue) with Beaumont being rated higher.

The Cleveland Clinic is the #1 rated Heart Hospital followed by Mayo Clinic at #2.

That should give you enough good choices within reasonable travel distances.

With regard to valve selection, I have asked for an On-X (third generation) valve for my next replacement. Like all good mechanical valves, it is designed for way longer than anyone can expect to live AND it comes closest to Tissue Valve performance in terms of Low Turbulence, Low propensity of Clot formation, and other undesirable possibilities. FDA approved studies are underway with NO Coumadin for Low Risk patients and LOW Coumadin for mild risk patients.

You can find more about this valve at www.onxvalves.com Their Promotion and Education Manager, Catheran Burnett ([email protected] or 888 339 8000 X265) would be happy to send you an information package with data comparing the top rated valves. Catheran is a former Heart Surgery Nurse and has been in the valve business for over 10 years. She "knows her stuff"!

'AL Capshaw'
 
Thanks Cathy and Al, I appreciate your thoughts.
Al, I am in Oakland County and more than likely will have my surgery at Beaumont. Thank you for the information. Did you have your surgery in MI? I meet with the surgeon on Thursday-Good luck to you on the 9th Cathy.

Karen
 

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