The story of Michelle
Hello I’m michelle I was diagnosed with Idiopathic Pulmonary Arterial Hypertension at the Medical University of South Carolina in March of 2009 this has been such a rollercoaster ride. It was many great years you couldn’t even tell I had a terminal illnesses. My heart is just a ticking time bomb. But the weight lost began and wouldnt stop. I got down to a 100 lbs and less after I caught pneumonia summer 2017. I was told I either had to get a transplant or i was going to die. So that got me put up for evaluation to see if I even qualified for a transplant. I did qualify for a lung transplant but they also found out that I also needed a heart. So MUSC told me that they couldnt preform my transplant because they can either do a heart or lungs not both at the same time so i would leave to receive care elsewhere.
My pulmonologist sent out four letters to hospitals he knew had great transplant facilities. He wrote letters to a hospital in Jacksonville Fla, Duke University in NC those two denied me right away because I only had state medicaid. So a hospital in California called USC Berkley accepted the referral and a hospital in Pennsylvania call UPenn in Philadelphia. California was so far and i have absolutely no family for support on the West coast. I packed up me and my two kids and moved from Charleston SC to Bensalem Pa. It’s 12 miles away from UPenn so i can be seen there. When I got here I only weighed 97 lbs my heart rate was out of control would go from 109 and shoot up to 130 while resting. Since I was so under weight when I went up for evaluation again up hear the surgeon refused to preform the surgery because I was so malnourished and weak he said I was going to die. It seem like the move was a waste bc i had to gain weight and get stronger. I couldn’t eat bc my high pressures in my lungs was causing blood to back flow into my liver. So my liver was so enlarged it was pressed against my stomach and my body thought I was full so i could only eat small portions. I was given a feeding tube which failed miserably the feeds would come back up bc my stomach would overfill bc of my liver than it finally bent and got clogged so it was taken out.
My next option was Total parenteral nutrition (TPN). At first this didn’t work either my body had the craziest reaction that they said they never seen before my body didn’t want any parts of this. I had to make them stop they told me this was my only option I had left to gain weight to get listed. I said well guess I’ll just go home and enjoy the time I have left with my kids. Come to find out they uses seafood lipids for the tpn and I’m allergic to seafood thank god that door wasn’t shut on me. So they switched up how they would make the tpn. So i was told to eat as much protein enriched foods and i was also getting nutrition through iv. So im I’m also working out with physical therapy so I could get stronger. I reached my weight gain goal and my surgeon said I looked a lot stronger and I finally qualified for being listed to get a double lung heart transplant. Now I’m just waiting for my call. This road is very scary but I’m glad there is light at the end of the tunnel for me now.