My name is Amanda I have 3 kids and a significant other. I lived a normal active life with my family. We went to the parks, public pools, the lakes, chasing the kids around, farmers market, just being active, then in 2014 I started to get sick not feeling right went to the doctors they had said I was overweight so I started to workout more and lost 40 pounds still felt the same shortness of breath, tired even after losing weight, went back to the doctors they then said it was asthma they referred me to the pulmonologist before I was seen I passed out at work and ended up in the ER. They kept me overnight and on November 11, 2014 I went in for a right heart cath and it was confirmed I had PAH (pulmonary arterial hypertension) which is an incurable disease unless I receive a double lung transplant, there are medications to slow down the progression of the disease. I was on the oral medications then I had a hickman placed to run a IV medication 24/7 straight to my heart, and then I had that removed due to several infections. Now I am on a different IV medication that I insert a needle in my stomach to have medicine running 24/7 and I have to change 2-3weeks and the pump cant be stopped. I am also on oxygen which also limits my activities severely.
PAH is a chronic and progressive rare disease that affects your heart’s ability to pump blood to your lungs. PAH causes the arteries from your heart to your lungs to narrow, which makes it difficult for blood to flow from your heart to your lungs. Without regular blood flow, your lungs don’t receive enough oxygen. This puts extra strain on your heart, which makes it harder to pump blood to your lungs. PAH is often misdiagnosed but some of the symptoms are shortness of breath, feeling tired, dizzy, fainting, swollen stomach, chest pain, swollen ankles and legs, and rapid heart beat.
My pulmonologist referred me to the lung transplant team closer to the end of 2017. The team said I am a good candidate for a lung transplant so they start the transplant workup. When my blood work came back my antibodies were to high to be placed on the list the antibodies are at 99% and the transplant team would like them to be at 10% or less. So the team came up with a plan to knock the antibodies down and keep them down with 3 different infusions. I start my infusions July 30th, 2018 and the hospital is 111 miles away from my place one way. I will be going each week from 1-3 times per week depending on the infusions for at least 4 months maybe even longer. When my numbers come down for the antibodies and I lose 15 pounds (which will be no problem) then I can be placed on the list. Having a double lung transplant will better my life and my family’s life and all the support I can get will be greatly appreciated for pre- transplant and post transplant costs.
Amanda & family
**Family and friends of Amanda are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation.
Amanda has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
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