I have been meaning to update on the latest happenings with me, but haven't had a chance to sit down and write! Many of you know that my sister, Ginger, passed away a few years ago from something called
Long QT syndrome (you can click to read about it). My sister, Brandi, was tested a while back to see if she had the genetic mutation that can cause LQT because it is very hereditary. She tested positive and so did her son, Dane (2). We have all (my parents and siblings) been in the process of getting tested over the past several months. I finally got my results and found out that I am positive as well. So far, three of us sisters are positive, two siblings are negative and the rest are still waiting to hear. Because I tested positive I now need to have my children tested as well.
I have been prescribed beta blockers which I will now take for the rest of my life. Beta blockers slow the heart rate and make the dangerous rhythm associated with Long QT less likely. And they also make me tired! But, that is supposed to get better after a week or so. I have been restricted from using alarm clocks now as well. There is something with being awakened by a loud noise from a deep sleep that can cause the heart to beat so fast that it can cause death. (We think this possibly could have happened to Ginger since it was around 6am on a Sunday morning. She would have been getting up to get ready for her morning of getting herself and 4 kids ready for church.)
My doctor said I could keep exercising the same as I have been... basketball, running, etc....for now. That might change as they learn more. Now to the tricky part. Many doctors suggest that patients with Long QT get an ICD or implantable cardioverter defibrillator, which is surgically inserted into your chest under the skin. I went to see an Electrophysiologist on Friday to get his opinion. He said that... considering my age of 35 (the dangerous years are teenage to 30 in females), that I have had no symptoms, and my QT interval on the EKG is on the border.... my risk is low, and that whether or not to get an ICD is entirely up to me. He said that if I wanted to get one, no one in the professional world would bat an eye at that because of what happened to Ginger and the fact that I tested positive for this mutation. He also said that if I decided not to get one, that everyone would understand that as well, because my risk is on the low side. Then he said that HIS professional opinion...since I have 5 children and he would always err on the side of caution...is that I should get one, just because you never know what can happen. My first symptom could be death. Harsh, but true. But, he said that Don and I need to discuss it, pray about it (I told him that is what we would be doing) and do what we feel is right for me. I haven't made a decision yet, as this is such a huge decision, so we are taking our time. Thinking about it (constantly) and praying about it. So glad that Don is doing this with me. The ICD would be surgically implanted and then every 7 yrs they have to surgically open your chest to change the battery as well. After surgery you can't lift anything over 10 lbs. or raise your arm for 6 weeks. Doesn't sound too fun, huh? BUT, if something happened and I had the defibrillator, I would be fine. We will eventually have to decide if our kids will need it as well (those who are positive).
This is all very new to me and hard to explain so I hope you understood all of that. It is a learning process. I am just so glad I have a couple of sisters to take this road with me! And so grateful for priesthood blessings, the temple, and the Holy Ghost that have brought so much peace. Don and I really do feel so much peace.
