Amy's Heart Relief Fund
Amy has been diagnosed with a very rare congenital heart defect. She will be heading to Cleveland Clinic in Ohio in the beginning of August where she will be hospitalized for over a week and will have 2 surgeries. Amy does not know how to ask for help, even in a situation this serious. As a family, we decided to ask for her. This is causing an unexpected financial burden. She has been in pain daily for as long as we can remember. Amy has been to so many doctors with no real answers, nor conclusions. She now has a diagnosis and she needs our help. There are images at the bottom of this message to give you a visual of her heart defect.
Back story (if you are interested in more details): Amy had an endoscopy (due to a history of GI issues) done in April 2021 and the doctor asked after the procedure if Amy knew she had something pushing against her esophagus. Of course she had no idea. A week later she was getting a CT scan of her chest which showed a congenital heart defect, which is called a vascular ring. Amy was referred to a local vascular surgeon who ordered 2 CT angiograms, one of her chest and one of her neck. The report showed a right sided aortic arch with an aberrant left subclavian artery with a Kommerell diverticulum. This is a very rare defect. It is only found in 0.02-0.1% of the general population. Once she discovered the rarity of the issue, we began to research surgeons who specialized in congenital heart defects. It was surprising to find that most people had never heard of a vascular ring. When Amy was with the local vascular surgeon, he asked if Amy and David would like to see the CT scans. The surgeon and staff were all in shock at what they were seeing. The Kommerell Diverticulum is literally blocking Amy’s esophagus 100% where it lays across the esophagus and it is also mildly compressing her trachea. On the scans, her esophagus disappears where the Kommerell Diverticulum crosses her esophagus (you can see this image in the CT photo attached). It’s incredible she is able to eat any food at all. The local surgeon admitted, a couple weeks after their appointment, that her case was too difficult for him and she would need to go to a larger institute. This brings us back to researching surgeons who specialize in congenital heart defects. After searching the US, we found Cleveland Clinic had the #1 heart institute in the USA. It is named Millers Family Heart Institute. Dr Gosta Petterson is world re-known and specializes in congenital heart defects. He reviewed Amy’s case and stated she will need a right thoracotomy with a resection of the Kommerell diverticulum. They are having to bring in a vascular team as they will be dealing with her left subclavian artery. Her vascular surgeon will be Dr Sean Lyden. It is good to know there will be many eyes and skilled hands on her during surgery. Amy and David will be leaving early August for appointments at the Cleveland Clinic. After the appointments, she will then be admitted for her first surgery with the vascular team who will be performing a left subclavian transposition. A second surgery will occur two days later with Dr Gosta Petterson, the cardiac surgeon who specializes in Amy’s condition. He will be resecting the Kommerell Diverticulum. Amy was told to expect to be in the hospital 5-7 days after the second surgery and they will most likely expect her to stay for a post op appointment 2 days after discharge. David nor any family will be allowed to spend the night in the hospital as there are still Covid restrictions. This means David will need a hotel room for 15-19 days (the cheapest is $135 a night at the patient rate). That is a long time to be 10+ hours away from home. This is a large unexpected financial burden due to the need for hotel costs, food and of course the medical expenses. Short term disability only covers 60% of her salary while she is out. She also has to worry about her monthly bills at home. Amy is expected to be out of work for 8 weeks total, which includes surgery time. This congenital heart defect is already causing multiple symptoms with her GI and respiratory tract due to constriction of her esophagus and trachea. Without this surgery and discovery of this defect, she will eventually not be able to swallow. She is at risk for aortic dissection, increased dysphagia (difficulty swallowing), dyspnea (shortness of breath), superior vena cava syndrome, free rupture or perforation into the esophagus.
Amy is always taking care of others and is too proud to ask for help. If you are willing to give just a little to make this journey less financially stressful, we would forever be grateful. Thank you so very much!!
