Memorial story


by caregiver Aaron Jackson

Amy was born prematurely, but was a fighter and lived on. At 18 months she was diagnosed with cancer in her spine. She had a 5% chance of survival, but once again, she was a fighter and she lived on. The radiation that was used to treat her cancer was severe on her little body, and over the years she developed other health problems.. Due to scoliosis, Amy wore a back brace from age 4-12. Amy was diagnosed with ITP several years later, but got it under control. Amy was diagnosed with cardiomyopathy in her 20s.

In 2004, Amy was having problems with her heart.. the doctors told her that she had a hole in her heart, and that if she didn't get surgery in two weeks she would die. Amy saw other doctors and they ran tests, and told her that she did not have a hole in her heart, but that she had Pulmonary Hypertension. Amy was diagnosed with PH in August of 2004. Amy was told that she wouldn't survive to see Christmas. She did, she continued to be a fighter. Amy and I met in 2005, and in August of 2005 became boyfriend and girlfriend. Amy was taking Remodulin for her PH since she was diagnosed, but around June of 2006 she tried out using Remodulin and Viagra at the same time. It seemed to work, she felt better, and was out of breath less often. Due to the seeming success with viagra, Amy switched to using only Viagra, and not Remodulin. It seemed to be working well.. It was a "honeymoon effect" the doctor said. Her body responded to the new drug well at first, but then not as well afterwards.

Amy did not have a large body. She stood 4' 10" tall and weighed, usually, about 65-70 pounds. In July of 2006 Amy went back to using her Remodulin (with a subcutaneous needle and pump) as well as the viagra. The pains that came with the injection sites got worse and worse, and her lack of fatty tissue did not help any. Pretty soon they became just about unbearable so on August 11, 2006, Amy switched medication delivery again. She received a heart cath to deliver her Remodulin, and stopped taking Viagra.

In many cases, I was told, a person's body that does respond well to Remodulin, can respond differently to it if taken off of the drug, and then back onto it. As in this case..

The need for remodulin increases kept coming and coming. When I met Amy, her oxygen level was at 1-2 LPM and sometimes 3 LPM when she really needed it. In August of 2006 it went from 3 LPM regularly, to 4 LPM. Her Remodulin dose when we met was in the 20s. In August of 2006 her dose was in the 60s.

Amy and I got married August 26, 2006 In Portland Oregon, then we moved down to California. About two weeks later she began to retain fluid again, and we went into the Emergency Room, for the fluid build up, and chest pains. Amy went for a CT scan, and she passed out on the table. The dye they used made her even more uncomfortable and she was fainty and sweaty.. They tapped her abdomen for fluid and drew out 700ml (or cc) of fluid. The doctors decided to admit her to the hospital for observation. The observation turned into a 3-week stay, during which the Remodulin dose raised into the 70s, her oxygen raised to 4-5 LPM, and they tapped her belly once again, and received 1800ml of fluid. Finally, and with the help of Aldactone, she was feeling a bit better, and sick of the hospital, and she was discharged. We then packed up and moved back to Oregon to be near her doctor.

They did a echocardiogram and found Amy's pressures to be in the 120s and 130s. He told her to increase Lasix, and change this and that with all her other drugs.. In November 2006, Amy went back to the doctors and her pressures were still in the 120s-130s. Her doctor told her to not try to be tough. He said that if anything bothers her at all, she should go right to the E.R. The weekend following Thanksgiving she was having trouble breathing. Insomuch that if she changed position while laying in bed she would get out of breath. I carried her to the restroom most of the time, and stood by as she bathed. Amy and I went to the E.R. that weekend and they admitted her into the hospital.

Her doctor told her that she was having right heart failure, and that she shouldn't expect much longer to live. He said she could start tracleer, but it takes about 3 weeks to start showing effects, and he doubted she would live that long. November 29, 2006, Amy and I made the decision that should (when) she should stop breathing, or her heart stop beating, she should not be incubated, or resuscitated. Many friends and family came to visit her in the hospital.

On December 3, 2006. Amy took her last breath, and thanks to Morphine and other pain medicines, she was not uncomfortable, and was completely 'out of it' in the end. Something that I prayed for, a peaceful ending.. Amy lived a wonderful, strong life. Amy was not afraid of dying and was not sad, for she believed in Heaven, and that we all will be together again. I miss her, and her family and friends miss her, but we also believe we will be with her again. Amy was strong and happy, and never really showed that PH or anything else was getting her down. Instead of being depressed from her condition, she cherished and loved life, and lived well. Some say to me "I'm sorry for your loss" To that I say, "The only thing I have lost is her company, which I will have again some time. Otherwise, I have gained so much!" Indeed, Amy has taught me many, many things. She is such an example...


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.