December 15, 2014

Dustin & The LMNA Gene

There has been a lot going on with Dustin for the last few months. His Dad died of heart failure and Dustin has been tested by Dr Zaragoza in UC Irvine. Dustin tested positive for the gene mutation- the LMNA gene which causes sudden cardiac arrest. Over the last couple of months, Dustin has had some heart palpitations where he feels like he is running a marthon. This would come on suddenly and last for a few minutes, stop and then start again. It happened off and on at random times, 2 am and in the middle of the day when Dustin was just sitting at work. We started to feel a little concerned so we made an appointment with Dr Copeland.
We started Dustin at his regular MD- Lee Copeland and they did an EKG & Echo to make sure Dustin's heart was fine. Dustin passed both tests and said they would do another one in a year and to not worry about it.
I was not comfortable with that decision and asked to be referred to the cardiac specialist in Fresno, Dr Sam Borno. We saw Dr Borno and he ran another EKG & Echo and said the same thing. He said Dustin's heart looked fine. He told Dustin he needed to lose about 50 pounds and eat healthier so that if something were to happen, his heart would be in the best cardiac shape.

I was still not happy with this answer. Dustin at this point was ok since we saw two different doctors and they said the same thing. Meanwhile, I have been talking back and forth with Dustin's 2nd Aunt, Lana Archibald who's husband and son both also have the LMNA gene. She said it was important to see an Electrophysiologist who knows more about this part of the heart that the gene can affect. I called Dr Bornos office and spoke to the nurse practitioner who referred us to Dr Rob Patrawala in Redwood City, CA. After asking around, my friend's friend works in the cath lab at St Agnes and said he knew Dr Patrawala and that he was the best in California. I read information about Dr Rob on his website and was extremely impressed. I made Dustin a consultation appointment for the next week.

 We drove to Redwood City and I brought all of the family history sheets Lana & I had been working on plus the notes from Dr Zaragoza regarding the specific gene mutation. Dr Patrawala listened very well to Dustin's condition and suggested Dustin be put on a heart/holter monitor for 72 hours. We left Dr Patrawala's office with the heart monitor on & then FedEx it back a few days later. 

Dr Patrawala called Dustin himself the next week to go over the results. He said Dustins heart was going into A-Fibrillation and his heart had beat 44 thousand more time than it should have over those 72 hours. He suggested that Dustin get a pacemaker with the defibrillator placed asap.
Dustin explained to Dr Rob that we are having a baby in about 3 weeks so could we do the pacemaker in a couple of months? Dr Rob said no way! He said it needed to be done asap and to book with the surgery scheduling girls now. Dustin and I talked about it and prayed about it and knew this was the right thing to do. 10 days later, we drove up to Redwood City to the Sequoia hospital there to have the pacemaker placed. 
These are a few pictures from the surgery.

I am so grateful that Dustin participated in the genetic study to help our knowledge of his health. I know we were lead in the right direction to have this pacemaker placed. 
Dustin will see Dr Patrawala mid January to go over what happens next.

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