Caregiver Diary -- Amanda DaSilva
Monday, May 19 2003
In May 1997 it began. My sister, Melanie, had her first seizure. She was out with friends and didn't realize at the time what had happened. Not thinking it was anything, she didn't tell any of us. In September 1997, I heard a thump as I was getting out of the shower. No one responded to my "Hello" so I just wanted to check it out. There was my sister laying face down on the floor of our living room. Unresponsive, but breathing. She began seizing and I did my best to keep her on her side while calling my brother to help. I was unaware of any health problems she may have but there was no time for panic. I called 911. She was taken to the hospital and they couldn't figure out what was happening. It was one of the worst days of my life. Six months went by, no diagnosis, tons of testing, EEGs, MRIs, blood test after blood test. No definitve diagnosis. I watched my sister deteriorate quickly. No one could figure out what was happening, all we knew was it was happening quickly and would eventually take her life. After 1 year from her first seizure, a local cardiologist did an echocardiogram and diagnosed PPH. I can't even begin to explain how I felt when I looked up PPH in my medical journals. The symptoms, the medications and worst of all a life sentence of 3-5 years. All I could do was cry. My sister and I didn't always have the best relationship, we had our share of fights, but now it was all put back into perspective. Right before she was taken to Johns Hopkins, she could barely walk, even with O2. Those few weeks she was away were a blur. I got a call a few days before my birthday that she was responding to CCBs and she may come home soon. I couldn't wait to see her so for my bday I went to Marryland. When I saw her walking and breathing without all the difficulty like before I began to sob. That was one of the happiest moments of my life. It took a long time to come to terms with her diagnosis and I really tried to be as supportive as possible. The past few years I have been more pro active in her life. Each year that passes it a celebration! She is doing extremely well after 6 years with PPH. I am now dealing with it head on. I am writing to Congress, donating to research when I can and informing people about PPH. I had the opportunity to attend the PPH conference in California last year with my sister, which turned out to be a wonderful experience. I truly admire my sister's bravery and courage with PPH. She is the most determined person I know and she is the person I admire most in my life. I give her all the credit for facing, dealing and fighting this disease every day. She is my angel! Well that is my story in a long nut shell. I will update again soon.
Thursday, July 10 2003
It's been a little while since my last entry. The past few weeks have been rough. My boyfriend's dog was put to sleep, my grandmother was hospitalized and it just kept going down hill from there. My grandma will be 80 in Aug. Unfortunately, she hasn't taken the best care of herself over the years. She recently was diagnosed with lymphoma, kidney failure and pulmonary hypertension. It has been quite scary. My family underwent testing about a year ago to rule out familial pulmonary hypertension. I honestly have to say I never gave it much thought until my grandma was just diagnosed. Thankfully, she is stablized for the time being. Her doctors don't feel it is primary ph like my sister Melanie has but it is PH nonetheless. I just never thought in a million years I would have 2 family members with this disease. The doctors believe it is due to all her other health issues but I still would like to know 100% about the familial link. My sister has struggled for many years now with PPH and she is 27, with a strong head and will to fight. I am just not sure if my grandma has that left in her. I guess only time will tell. I am however, impressed with how quickly a doctor/researcher in NY responded to my sister when we called about my grandma's diagnosis. The doctor is currently mapping my family's gene patterns to see if she can or can not locate the familial ph gene. At least now there are a bit more options than a few years ago. I have to say it has been a heck of a time. I will keep posting as the results become available. I guess the best thing out of all this is that my family has become closer and I am happy about that. Since that really is what it's all about.
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