I'm not sure where I should begin, or what to even say. So I'm just going to speak the thoughts that are floating around my mind and share my life as it is at this very moment. First, I want to express my love and gratitude for all the thoughts, prayers, calls, and messages. I want to say thank you to everyone for even the small simple acts of kindness, and to my parents who have been there every moment despite how tired they were, how far they needed to travel, or the money they had to spend. They have been there going through this journey with me, experiencing the same heartache I have felt, the same confusion, the same little bit of hope, the same sadness of the reality of the situation, yet keeping the faith that the lord is in control and will carry us through all of this. I may be the one physically affected by this heart defect, but I am not alone in my journey. On June 1st, we found out that I was born with a congenital heart defect known as an Atrial Septal Defect. In other words, I was born with a hole in my heart. This is one of the most common defects and, in most cases, is one of the easier defects to repair, IF diagnosed at birth or early age. Unfortunately, I was diagnosed at the age of 43, after developing the symptoms of the damage it has caused. The prognosis thus far has not been in my favor, not expecting to live past the age of 45. It has been very difficult to comprehend and understand the actual severity of my medical problems. I will try to explain the way that I understand my diagnosis and hopefully, in a way that makes to everyone reading this. In a normal heart, there are two chambers divided by a wall, referred to as the right side and left side of the heart. The right side is filled with deoxygenated blood from the body's extremities and is then pumped to the lungs for oxygen. At that point, it returns to the left side of the heart so that it can be redistributed with oxygenated blood back out to the body. Since I have a hole in the wall separating each of these sides, blood is primarily spilling over from the left side of my heart into my right. This is causing congestion within the right side of my heart. Which is being pumped right back into my lungs. Our vessels and lungs are not made to withstand such volume or handle the added pressure which is causing my lungs to restrict themselves, causing the blood to regurgitate back into the right side of my heart. This is causing even more congestion. My heart, working overtime, is pumping harder and faster which is ultimately causing severe high blood pressure to my lungs. If I have any other disorders, such as a peripheral vascular disease (narrowing or blockage of the blood vessels) of some kind, then closing the hole could be detrimental. As the hole in my heart is acting as a pop-off from the pressure. If it is just reacting in defense of the overflow, then it will somewhat correct itself once the hole is repaired. This past week, we found out that the defect may not stop at just my heart but the routing of my vessels/veins coming from my lungs. My new doctor, who specializes in Adult Congenital Heart Disease, noticed that I had a high output of blood from the right side of my heart, but not the same input back into the left side of the heart. So now the question is, where is the blood going? I have an MRI scheduled to confirm the doctor's suspicions. They suspect I have another abnormality called Partial anomalous pulmonary venous return, also known as PAPVR. In layman's terms, there are 4 main veins/vessels that bring oxygenated blood back from the lungs and fill the left side of the heart to be distributed back out to the body. Based on the last electrocardiogram, only 2 of the 4 were found. They suspect the other 2 have attached themselves to the main artery coming in from my upper extremities that fill the right side of my heart. The blood is circling back around and making another trip back to my lungs without being distributed to my body. An MRI will provide confirmation. The good news is my dr doesn't feel like I have full-blown Pulmonary Hypertension. And the problems are from the overflow of all the blood. This is great news, as a heart and lung transplant, were my only options. Or live with it knowing, I might not live past the age of 45, if I am lucky. Once we have the MRI results, my dr will consult with the rest of the congenital medical team and provide a plan of action. If my veins are returning to the left side of my heart from my lungs, and just weren't visible during the electrography, then there is a very small chance that they might try to patch the hole using a heart catheter. But if some of my veins are returning from my lungs and backtracking to the right side of my heart, then there is no other option than full-blown sternotomy heart surgery to reroute those veins and close the hole- if it is an option based on how tired and worn out my heart has become. My heart is severely congested with an average resting heart rate of around 100-105 bpm, beats irregularly, and is only working at approximately 50% of its capacity. I have put off creating this LFEBridge account, as I did not want to ask for help. But I don't have any other options. I am still paying my deductibles from June and July. And a new calendar year has started with my insurance, which means I have to pay another round of deductibles. Not to mention, the travel expenses that are not covered by my insurance, and the loss of income that I cannot afford to go without-I have already used all of the available sick time that I had accumulated. If anyone can contribute to this medical financial hardship, then we will be forever thankful. But regardless of any donations, please say a prayer for us. As I said, I am not the only one affected by this defect or possible defects. My 8-year-old son, my mother, my father, my immediate family, and my closest friends, who have been here from the beginning helping me without any complaint, have also been affected. It took me a long time to have a child, and I don't want him to have to grow up without me, nor do I want to miss all his milestones in life. I Sincerely Love you All! Heather
Artículos relacionados
