It's Time Like These

It's Time Like These

It's been two months since I last wrote.  Soo little and soo much has happened in that time.  Summer has come and gone --- well the heat is still here in Texas, but the kiddos are back to school, traffic is abundant and college football starts this weekend!  Always such a great time here in Austin.  But the traffic nor weather has not been my central focus this past summer.  I want to tell you about my journey.....

So let me pick up where I left off..... They found a hole in my heart.  Awesome.  Solution - easy, go for a less invasive procedure where they thread a small device (metal/titanium) from your groin into your beating heart - plug up the hole, Voila!  You're good to go.  SCREECH (record stopping noise). Nothing in my life has been that easy, call me a pessimist, I doubted this all-too-easy-procedure.  I can't tell what it was but something in my gut said "Allie, research more and think before you leap." Believe me when the doctor first said they could fix this without surgery I was admitting myself into the hospital to get the procedure done.  But, something stopped me.  Maybe intuition, maybe timing... Matt and I were scheduled to go to Mexico for a friend's wedding three weeks after I found out about my condition, whatever it was, it stopped me from going through with the procedure which gave me more time to do research.   What I found out, scared me.  Maybe  it wouldn't scare others.  But this metal device that would plug up my heart has only been around for 20 years -- I know that's a long time in medicine.  But reports that I read, not internet forums, but published researched articles that I read kept giving me doubt about this "easy" procedure.  I thought short term versus long term.   I weighed risks of device versus surgery.  I prayed, cried and even went to a psychic to guide me on a choice to make.  haha I know silly to some, helpful to others. Throughout the process, I realized, I will never come from a place from judgement again,, er, I'll try not to!  Whatever helps you get through your situation - do it!

I have gotten endless amounts of love and support throughout the journey,  it honestly makes everyday a little bit more bearable.  One support system has been this online group that I joined.  My wonderful friend from college, put me in touch with a friend of hers that has a CHD (congenital heart defect), and this wonderful soul took time to speak to me, she informed me of a facebook group called the "The Zipper Sisters"  - and although I don't technically have a zipper scar, I don't feel judged, I don't feel silly asking millions of questions, and most of all I'm inspired with what these women face on a basis. After many questions and conversations later I found that I needed to get out of Austin to get a second opinion. .  I contacted Cleveland Clinic, Mayo Clinic, University of Chicago - they do robotic surgery, and lastly on a whim I emailed the Surgeon-in-Chief at Texas Children's Hospital in Houston.

I got a call from the surgeon that night,  I emailed him in the morning and that evening while I was playing with Grace, he called my cell.  Like we were old buddies.  He told me he would see me when I came to Houston and we could speak more about options.  For once in this journey, I felt happy.

Two weeks ago, I walked into Texas Children's Hospital, by far the oldest patient there,  Matt and I spent the entire day at the hospital while they administered an ECHO, EKG, XRAY and hooked me up to a holter monitor.  I sat in rooms with themes of Mickey Mouse, Goofy, Dora the Explorer.  Matt was giggling the whole time -- to be me it felt like home.  Remember, I spent many days/weeks in hospitals and cheerfully decorated examination rooms when I had Leukemia.  At 4 it was normal, at 16, it was a little odd, now at 32, it was comforting.   I was set to meet with the assistant director of the adult congenital heart program and Surgeon-in-Chief. (my old pen pal),  I honestly was prepared for them reiterate what the doctors in Austin told me.  Maybe getting the device would be the best option.  What the told me was not only did I have a sizable hole in my heart, but that I had two "leaky" valves that the surgeon was certain would be needing repair down the road....so weeks and weeks of wondering of how to correct this defect, device closure or surgery, vanished.   I was now told that surgery was my best option.  I've gone through every emotion you could imagine, but the shit storm of emotions have subsided a bit and I am feeling a little peace.



While I wait to confirm the date of my surgery, I thank you all for your continued support.