Lisa's Heart Valve Journal

Steady progress

June 25, 2012

Its almost 6 o'clock and Lisa's breathing tube is about to be removed. All the test from a team of nurses and doctors have gone great and she's in the process of being weaned off some machines. She's writing notes and probably dreaming about how great her dad is. Haha. She will be back to blogging soon. Thanks again for all the nice words and prayers. Dad

Out of surgery

June 25, 2012

Just In. Dr called surgery went great. Valve repair is great. We can see her in icu in about 2 hours. Dad

AT THE MOUNTAIN

June 25, 2012

Surgery has started at 10:10 CT. All is well, They will call occasionally from surgery to give updates. Thanks for checking in. Dad

The foot of the mountain

June 23, 2012

Well - surgery is scheduled for Monday, 8:30am CST. Keep sending me love folks!

I have this image in my mind of a long flat plain and away in the distance is a mountain. My mountain. I'm almost to it now - we (my loved ones and I) have been walking toward this mountain for weeks now. Just walking. No real idea of how tall the mountain really is, how steep the trails are, what ravines and cliffs and landslides are waiting - just walking toward this unknown mountain. Thank god it's getting closer.

My family is amazing - they arrived in Chicago today and brought so much love with them. The strange thing I've learned since my family lost Jessica, is that nothing else in life will ever be quite that bad. We have a measure for what we can survive. So - bring it on. We can handle this. It probably won't be easy, but we can take it, and grow and heal and live. We'll be ok.

In other news, my house is cleaner than it's ever been. Hurray! Nothing motivates a little organization time like knowing your Mom will be staying with you for awhile :-)

My last day at work for the next six weeks or so was yesterday - it's so strange to think of being gone that long! I am lucky that the awesome guy who used to do my job is able to come back for the Summer to fill in for me. Thank you Johnathan!!

I haven't had time to respond to each person who has written me - but please know I read all your messages and am so touched by your prayers and love. Thank you so very very much! And for all my new HVJ friends - I promise to write you back soon and answer questions. I appreciate the welcome you've given me and am so grateful to be part of the gang :-)

Love and light...
- Lisa

P.S.
Here's a poem I wrote when I first found out I had MVP, since I talk about Jessica so much I thought I'd share it with you all.

Mitral Valve Prolapse
-- For Jessica

So it turns out,
We are more alike
Than either of us thought -
More similar than sisters
Would want to be.

I am guilty
Of survival now:
Knowing how our hearts danced
The same troubled rhythm
Yet mine still beats.

Perhaps I should
Take this up with God,
But you are closer now;
You ask him - why it turns out
That mine still beats.

My Story...

June 19, 2012

I'm really liking this "having a blog" thing. I know that technically it's a Journal, but "blog" makes me feel like I'm writing important commentary that will one day be made into a "Julie & Julia" style movie.

I think I'm going to address you all as "Dear Readers" and make as many random literary and movie references as I possibly can.

I may also share poetry with you. Possibly even poetry I write. You have been warned.

So - Dear Readers - many people have been asking when I found out about my MVP, how did I know something was wrong, etc. So, here is goes...

I found out last summer that I have Mitral Valve Prolapse, but the story really begins with my sister - Jessica. For those of you who don't know my family, my older sister Jessica passed away about three and a half years ago - she was 27. Jessica also had MVP, regurgitation and most likely similar "electrical" issues to mine. Doctors were aware of her MVP, but she was told to basically "be healthy and avoid stress" - her death was extremely unexpected. So for those who have been wondering, yes: what I have is basically the same thing Jessica had. Evidently it is really rare to see such similar cases in siblings, and presumably mine is not as bad as Jessica's must have been - but regardless, the whole thing is weird on a level that I may never be able to sort through. Life is bizarre and unfair - but it goes on. So we go on too. Right? Of course right! (This is my blog - I will speak in "Fiddler on the Roof" whenever I please).

So to continue: last summer I was told that I have MVP with some regurgitation, but that I would be fine "just be healthy". Ok... Several months went by, and then earlier this year I started a new workout program and noticed that the chest pains I occasionally had seemed worse, and something just did not feel right. Finally, I went to google and found a cardiologist with good yelp reviews and made an appointment. I am so lucky that cardiologist was Dr. David Koenigsberg - he really listened to me, ran multiple tests and because of my family history of sudden cardiac death, treated me with sincere concern. Dr. Koenigsberg discovered that along with severe regurgitation (more than 50% of the blood in my heart is flowing back through the prolapsed mitral valve) I also have ventricular tachycardia (irregular/extra heartbeats). It's this electrical-extra-heartbeat issue that is the real cause for concern, and I've been taking a beta-blocker to help my heartbeat behave until surgery.

Dr. Koenigsberg recommended I get a second opinion on surgery, so Dr. Robert Bonow also met with me (and my parents, sister and boyfriend) and seconded Dr. K's diagnosis. They both recommended Dr. McCarthy very highly, and after meeting with Dr. McCarthy and his team I feel really confident that this is the right choice. They tell me there is a better than 99% chance they will be able to repair the valve, and once done, I should be good to go for the rest of forever :-) Here's to not worrying about it anymore!!

Surgery is coming up fast - I have a long list of things I was planing to do before, but it seems a lot of things will just have to wait. At least I took care of Item #1 "buy boy-brief-cut cotton underwear". Yes, that is a real To-Do item, and if you'd ever been to four hours of Pre-Op tests without thinking first about what underwear you had on, trust me - it would be at the top of your list too!

Thank you for all the lovely comments on my guestbook page! If you leave more comments though please include your name - I can usually tell who the notes are from without a name, but it does help :-)

I am so fortunate to be surrounded by so much love - thank you all.
- Lisa

June 15th

June 15, 2012

Hello! This is my first entry, and I'm not sure if I should say "Welcome to my journal" or "Thanks for letting me join!" - either way, here I am. :-)

I will be posting more information soon, but wanted to get things rolling...

I have mitral valve repair surgery scheduled for June 25th at Northwestern Memorial Hospital with Dr. Patrick McCarthy.

I haven't had any severe symptoms, only some chest pains and a very irregular heartbeat. I have severe regurgitation and ventricular tachycardia - hence the surgery.

For those friends and family members who would like more details I'll post a back-story soon. For now, though I'll say that I feel fine - and despite the general scariness of heart surgery, I feel extremely blessed that my Doctors noticed this condition and and listened to my "Gut feeling" that something was wrong.

Thanks to all for the kind words, cards and prayers I've already received - they mean more than I can say.

more soon...
- Lisa