A Quick Update

Hello Everyone!
 Sorry it's taken be so long to post an update, but I finally got some more information today.  I'll start with the good news first.  A couple of weeks ago I had some blood drawn to see if my body had built up any antibodies to anything, the results came back as a zero!  Which is great, this means it makes it a little easier to find a compatible heart, and my body won't reject it as easily.  Now for the bad news, I've been having a lot of stomach problems the past 4 weeks.  I could barely eat anything and I had a constant stomach ache and bloating.  I went into the doctor and they are pretty sure I have Celiac disease (which means I can't eat wheat).  The only way to know for sure is to do a biopsy through and EGD.  So sometime in the near future I'll have to have another EGD done.  It was also discovered that I was having a reaction to one of the new medications I was put on.  In the mean time, I've stopped taking the medicine and I'm eating a wheat free diet, my stomach is slowly but surely starting to feel better.

I received a call from the transplant director at PCMC yesterday.  She told me that the transplant team has met several times to discuss my case and due to the complexity of my heart defect she wants me to get a surgical consult at IMC.  Apparently my case is very complex and I have several comorbidities due to my liver disease, and I have a complex anatomy (some of my internal organs are on the wrong side of my body).  After considering all of these factors it was decided that I should seek a second opinion with the transplant team at IMC.  I have an appointment in December to discuss my case with the surgeon over there.  I'll keep you guys posted.  But please please pray that this meeting goes well.  If IMC cannot do the transplant I will most likely have to seek help out of state.  Thanks so much for listening to me ramble.

'Til next time.

~Heidi~

October 30th 2013

Hello readers and welcome to my blog!  I was born with a congenital heart defect that consists of an atrioventricular septal defect with transposition of the great arteries and pulmonary atresia.  This kind of defect is commonly referred to as "half a heart."  Throughout my life I have had many heart surgeries and heart catheters done to improve my condition.  My first surgery, a Blalock-Taussig shunt, took place when I was three days old.  At two years old I had a Glenn procedure, and at five years a Fontan procedure.  Due to the complexity of these procedures I won't bore you with the details.  After the Fontan procuedure I had a couple of complications which consisted of fluid build up in my pericardium and multiple re-admissions for pneumonia.  

For the last 19 years I have been extremely blessed and fortunate to have had good health and live a realaitively normal life!  This past year I have noticed a decrease in my exercise tolerance and increased swelling in my legs.  My oxygen saturation has also declined.  I've also started to experience cardiac related  liver cirrhosis.  This happens when the blood from your heart backs up onto the liver causing damage.  Earlier this summer  my terrific doctors (seriously they're the best) at Primary Children's Medical Center; suggested a possible Fontan revision to improve the blood flow in my heart and decrease the pressure against my liver.  Unfortunately after further review it was decided the risk of the surgery would outweigh the benefits.

I'm now going through the steps to get listed for a heart transplant.  I still can't believe it.  It's been quite a shock since my cardiologist suggested transplant would be the best route.  I've always known I would need a transplant eventually, but nothing prepares you for the day your actually told.  Anyways, this brings me to the creation of this blog.  I'm going to write about this incredible journey in hopes that my story may help others going through the same thing.  Thank-you so much for reading!  'Til next time.