I was diagnosed 19 years ago with Dialated Cardiomyopathy also known as DCM. I was able to function well with medicine and a good diet up until 2015. I went to see family for the holidays and a family member was sick, I also became ill. I went back to work and thought it was just a cold or virus that would go away. My coworker made me leave work to go to urgent care. I was told my cardiac enzymes were up and I had Bronchitis. I was sent to my cardiologist and my heart Ejection Fraction was 14%. I was immediately scheduled for an ICD placement. As of May 10, 2015 I have been placed on permanent disability.

I was also referred to Spokane for heart transplant listing. After all testing and review I was denied. Due to my high antibodies and diabetes. The only option they gave me was a LVAD. I was told I basically had 2 years to live if I didn’t choose to have one placed. We went back to my cardiologist and asked for a second opinion and was referred to The University of Washington Medical Center. I did all the testing again and they accepted me an I was listed as status 2 onthe heart transplant lists with UNOS. Because of being listed we needed to be closer to the hospital if cold so we had to sell our home that we lived in for 17 years. Our family became separated because my daughter and I moved 280 miles away to be with my parents until we found a place of our own and my husband was able to sell our house. Our older son decided to stay over there and the 18 year-old wanted to finish out his senior year.

Before thanksgiving I had to stay in the hospital because I was retaining fluid and could not get rid of it with my medicine. I was beiginning to have kidney failure and also a partial collapsed lung. I could not sit and stand, get dressed or do anything without feeling like I could not get a full breath. I was told my heart functions at 1/3 of what it is supposed to. I stayed for 5 days and was put on Milrinone In an IV, it my heart pump stronger. Because of this I need to see the doctor weekly and driving up to Seattle is becoming very expensive for us. I will have to do this until transplanted and also after. I have been listed now for 2 years. The reason why it is taking so long is because of my body size and my high antibodies. We also have monthly visits for IvIg treatment to lower my antibodies. Each time we go up there for this treatment we have to get a hotel. Each treatment takes five hours so there is also travel and food expenses. It was brought up at my care conference last week that I may need to be separated from my family again post transplant and have to get an apartment in Seattle post transplant. And insurance deductibles are coming upalong with anti- rejection drugs and medicine. We just can’t do that financially as financially we are already hurting with our limited income. I also have home health coming in to do dressing changes each week and may need them more post transplant.