Amy had a life threatening saddle (double, into both lungs) pulmonary embolism, her first major event that would lead to being diagnosed with the rare blood clothing disorder Antiphospholopid Antibody Syndrome, or APS. At this time, a filter was placed in her Inferior Vena Cava (the vein that transports blood from the lower body to the heart. This was quickly followed by an almost 2 week hospital stay, and the realization that her first blood clots were not an isolated event. At this time, 2 stents were placed to help increase blood flow that the filter was hindering. They learned a lot, and barely let their guard down before more clots and complications arose.

Before they knew it, they were heading to Denver. The filter and stents were failing, causing more problems than they were fixing. These devices and their placement are delicate, and can't easily be fixed. They are permanent fixtures in the body, and there is only so much room in a vein to keep adding more. With poor placement, heavy scar tissue, and filled with clots, her best hope was the number one specialist (only one of three) in the country who perform the surgery and reconstruction Amy needed. The 7.5 hour reconstruction was successful and Dr. Brook Spencer (Denver) considers her in her top 5 most difficult cases. While the new stents were placed beautifully, Amy left Denver with an occluded femoral vein, meaning there was old clotting which turned into scar tissue within the vein. The location and severity of the occlusion left Dr. Spencer with no other options that she herself could perform. She angioplastied as best as she could and hoped the increased flow with the stents would be enough to keep things open.

They left Denver knowing that if there were continued issues, there is another specialist in D.C. who does another procedure that could help her femoral vein occlusion. After two hospital visits, in July and August of last year, it was found that the femoral vein occlusion in her right thigh is causing the stent in her right side to fail. Without taking care of the femoral vein, her stent will continue to fail. They can't add a new stent, because it won't last, and they can only add so many. Last November, Amy went in and Dr. Abramowitz made a several inch long incision into the thigh and cut the affected vein or veins open length wise in order to clean them out and restore blood flow. The doctor went in and while working on opening things up, clots broke loose and traveled up to her lungs. Her oxygen levels dropped during surgery, prompting the doctor to take other interventions and end the surgery. She had another IVC filter that was temporarily in place to ensure more loosened clots do not make their way up to her lungs. The doctor said her right side is beyond help and there is nothing more to be done, that the risks are greater than any possible benefit that might be left.

Luckily her body has now done an amazing job at creating collateral veins which re-routed blood flow around the blockage, but they will never be as good as the real deal. Even with the collateral veins, she will continue to experience pain, discomfort, and swelling for the rest of her life.  She has been in the hospital for four procedures already this year. 

 Amy is currently in the hospital with high pain levels, swelling, and infection setting in around the blood clots. The next and only step that doctors can see from here on out is to open Amy up and do exploratory surgery to reduce the infection and clear out the blood clots. This will entail Amy having a wound Vac placed on her for the next several weeks, limiting work and ability to do normal day to day activities. As she looks to the future of this chronic illness, we know it will be full of bumps and obstacles including time off of work, medical expenses, more doctors visits and a variety of other troubles. We ask only to help ease the burden of the outside factors to help make dealing with this illness a little easier on not only Amy but also Hailey as they navigate learning to live with this always changing disease. Anything helps and will help alleviate a little stress from the day to day struggles. We thank you in advance and know that prayers, good vibes, and healing hearts are also needed.