Since this situation is a bit complicated, I’ve decided to give a more in-depth history to explain the full picture of what has been going on recently with Duane’s health. As many of you know, our two children, Austin and Alisha were both diagnosed with Dilated Cardiomyopathy (DCM) and had heart transplants when they were infants. Their heart conditions were quite severe, and it was a miracle they survived to have another chance of life. Genetic tests that were done during these earlier years were non conclusive.
During the time of Austin’s second heart transplant in 2010, genetic testing had improved, and they were able to pinpoint the presence of a genetic mutation. This enabled us to individually be tested to see the risks this brought to each of us. At conception, each infant receives two of these genes. One from each of his/her parents. Both myself and Duane have one “good” gene and one “mutated” one. Austin and Alisha would have both received the defective gene from Duane, as well as from myself. This is what caused their Dilated Cardiomyopathy. They had no chance to live except for the miraculous gift of a new heart. Currently, for Alisha, she would now only be considered a carrier of the mutated gene (since she has a different heart).
One of our other girls received both of our”good” genes, while the other two girls received one mutated, and one “good”. Because Duane and I are “carriers” we are at risk for developing Hypertrophic Cardiomyopathy. (HCM) This disease is not as severe as DCM (where both genes are mutated), but it can also be very dangerous and life-threatening. Many patients of (HCM) have no symptoms, but then experience sudden death. Some patients have symptoms for many years and learn how to live with the disease, while others need to have mycetomies to surgically remove some of the heart muscle that has become swollen and causing an obstruction.
Last fall, Duane and I had echocardiograms done at a non-profit clinic by a doctor who works closely with the Cleveland Clinic in regards to families with Hypertrophic Cardiomyopathy (HCM) and Dilated Cardiomyopathy (DCM). Duane’s echo showed some thickening of the septum muscle which confirmed that
he does have signs of HCM.
He was advised to follow up with a local cardiologist at that point. It took us a bit to process this news, and since Duane had no symptoms of anything, we never followed up with a local cardiologist. (Maybe not a very wise choice!)
The last few weeks, Duane’s been more tired and then started having times when he had heart palpitations/arrhythmias. This past week, he began waking up during the night and feeling lightheaded. We checked his blood pressure several times during his lightheadedness, and it was low. He saw a family doctor on Friday, and she did blood work, etc. to see what could be causing these symptoms, however, we won’t have these results back until next week some time. Her plan was to help get him established to see a cardiologist as soon as possible.
On Friday night, these symptoms became more severe than any other time before, and we ended up calling the Cleveland Clinic on Saturday morning and talked to two nurses who were familiar with HCM. They both recommended that he go in to the local ER to get checked out, and if he felt the near-fainting feeling again to call 911. We chose to go in ourselves, and they admitted him for overnight observation and to do some tests. He had a stress test, X-ray, and an echocardiogram, and they all looked good. They did see the septal muscle that has some thickening (from HCM) and aren’t sure if these symptoms could be coming from this. We will be speaking to someone from Cleveland Clinic next week to see what they recommend and will probably get his echocardiogram to them to review, since they are the specialists in this area.
Duane is very stable and is definitely not having any signs of heart failure or anything potentially life threatening. We praise God for that! With the history of knowing about the HCM disease and not being sure what exactly was going on, everyone thought it was wise to be thorough in this way. They want him to become established with regular cardiology care and also eliminate his stress level as much as possible.
It was wonderful to get back home again and to be together as a family! We are rejoicing in God’s goodness and are confident that He will continue to guide us one step at a time.
Thank you for your concern, your prayers, and your love and friendship to our family. We feel so blessed to be a part of the family of God.
Cindy (For The Mullett Family)