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Patient Diary -- Linda Washburn
LehighAcresLinda@aol.com
Lehigh Acres Linda
Thursday, May 10 2007
Welcome to our new diarist!
Welcome to the PHCentral Diaries, Linda!
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Thursday, May 10 2007
I'M A NEWBIE HERE
Iam 57 years old and was diagnosed with pulmonary hypertension 3 months ago but I'm sure I have had this for years. I remember the first time I was out of breath I was shopping for furniture in 1990. For the next several years on and off I remember getting dizzy, short of breath, going in an ambulance several times to the hospital with chest pain. I would at first be borderline failing tests and then they started showing up I failed them. At first they kept saying I had panic attacks and then eventually tachacardia and then more tests and my mitral valve and tricuspid valve were bad and then the right ventricle was enlarged but still no real diagnosis until recently when they finally gave me a heart cath. Not only am I upset to be missdiagnosed for several years but I just got a copy of my hospital report of 2 years ago and it says I had PH then and no one ever told me! Right now I have no income, no insurance and my son and I are only living on his SSI check of 600 a month. This is the 3rd time trying for dissability and if Iam turned down this time I will have to get a lawyer. I have very bad days that my heart acts up and my face goes numb and my pupils dilate and I get so short of breath and dizzy I stumble and fall into the walls. My daughter wonders why Iam full of bruises all the time. I have guardianship of my son whom is 30 but looks 12. He has inoperatable brain cancer, is blind, has seizures, mentally 3-5 in diapers and a wheelchair and much more. He cannot do anything for himself. I was lifting him until recently I thought I was having a heart attack so now I have a hoyer lift to transport him from his wheelchair to his bed. Shane is my oldest son. I have 4 children and 2 grandchildren. My sons are :almost 31, 29, 27, and my daughter is 21. My grandsons are 8 and 5 months old. I have taken care of Shane since birth as the 3 others grew up and moved out. I don't think my other kids really understand this disease. They don't seem to get how sick Iam. My son is a miracle to have lived this long since he was born this way. No Doctor knows why he is still living. They have never heard of a case like my sons. When he turned 18 I had the option to put him in a home but to me there was no option. He is my son and I love him and felt no one would love or care for him better than Momma and in those homes he could have been abused so he has been with me almost 31 years now. now Iam sick and hoping for another MIRACLE in my family with my disease.
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Sunday, July 29 2007
Nothing is going right
Well, first I found out I have been turned down for disability for the 3rd time. I even had a pulmonary specialist write a letter stating I was in stage 3 and he supported my disabilty claim. I need to be on revatio but not having any income or insurance I'm just living on aspirin and feel like a ticking time bomb. Now my son has taken a turn for the worse. He has been in the hospital twice in the last week. He had a grand mal seizure and was choking on his fluids. I had to give him mouth to mouth. His sodium level dropped dangerously low and he had to be put in intensive care He is still in the hospital and they are tube feeding him. Iam getting his room ready making room for a hospital bed and an IV pole. He will have to be tube fed round the clock and I have to put his meds in it too. I can't believe a Doctor there said to me: When are you going to stop patching him up and face the inevitable and stop making him suffer? I guess he wanted him to go to hospice, put on pain meds and just let him die. I told him I had been fighting for his life for 31 years and I wasn't about to stop now. Others heard this and nodded in agreement. To me he is my son and as long as there is life there is hope. He might have a little set back but he is nowheres near dying. He is not in pain as he is on meds for that. He talks to me and tells me he loves me and holds his toys. Now...back to me. I have dipped into my saved tax money so much that Iam now lacking $800 to pay the taxes on the house. I hope I can make things to sell to catch up before tax time. I'm trying to find a lawyer to fight as I don't know how long I can last before I get the meds for my PH. As of today my son and I are still alive and Iam clinging to that.
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