Patient Diary -- Karen Knight
Monday, September 30 2002
I thought I wasn't in denial until I started to write this diary page. I was diagnosed with pulmonary hypertension in the summer of 2000 and eventually received disability back to Dec of 1999 when I had to quit working.
The inability to do jobs that used to be easy was something I had a hard time dealing with. My memory was shot and I couldn't multi-task at all. If I took a phone call, I had to write down what I was doing before picking it up or it took me 15 minutes to start again on whatever it was I was doing before the call. I was in denial then too. I finally realized something was wrong when I was straightening library shelves and was trying to decide which was harder, carrying 5 paper back books at once to the next shelf, or walking 20 feet twice instead. I realized that couldn't be an average decision and called for an appointment with my family Dr.
I was referred to a heart specialist and then to a pulmonary specialist who diagnosed pulmonary hypertension. I have sleep apnea and use C-Pap at night and O2 when awake. Need to go. I'll write more later. My daughter just arrived. Thanks for listening.
Karen
Tuesday, October 1 2002
Up in the night. I noticed I neglected to tell you anything about who I am. I am 58 (can't believe it), the mother of 3 girls and 2 boys and grandmother of 7, and have been a single parent for 17 years. My 18 yo son, Chad, got his first "real" job last Sunday and moved away from home. I'm really going to miss his sense of humor. My youngest son, Brad is still at home but straining at the bit...anxious to get on with life and my youngest granddaughter, Shayd, (who makes my life an adventure), is sleeping on the floor beside my bed >>i messed up cap lock and am too sleepy to sort it out>>talk to you later> thanks for all the information and encouragement >>nice not to be alone anymore. Hope you find peace and comfort in this day.
Karen
Monday, November 18 2002
Hi again. I think I might be that "immovable object" so many people talk about. It takes a lot to get me to change when I need to do so. My daughter scolded me because I hadn't been to a PH specialist yet. I bit the bullet and called a PH specialist in Salt Lake City for an appointment. He's a good friend of the pulmonary specialist that I go to now so they told me to go to my regular appointment on December 13 and ask for a referral to the PH specialist. I'm also going to ask about taking Tracleer or some PH medication. I think its time to re-evaluate what is going on since I'm failing quite rapidly right now. I'm sleeping too much again and walking at all is very difficult, uncomfortable and unsteady--it feels like my muscles aren't going to hold me up.
Enough complaining. I have found some good things lately too. I have a talent for writing and have started writing my life story in story book form....kind of like chicken little only more like a fable. It's called "8 Dragons". I don't know if it will ever be published, but I'm writing it for myself and my family and we've all had a good laugh so far. And I've started Christmas presents (homemade)--painting minature nativity scenes for each family and tying quilts for the boys who aren't married yet. Life is a lot more fun when you have a project. And as crazy as it sounds, one project that I work on regularly is crocheting bandages for lepers. Its an ongoing activity in the women's social group at church. Crocheting these bandages reminds be how grateful I should be for being so blessed to be where I am.
Thanks for your support. I don't talk much on line, but I do check in every day. Listening to what everyone else has to say has helped me move forward to a enrich my life. Sometimes I'm a little to accepting and don't fight as hard as I should. Your courage and humor have lightened my day. I too sit and read the e-mails when I wake up at night and I have a folder where I keep all the funny things people say. Thanks again and my the Lord bless each and every one of you. Goodnight for now.
Love, Karen K
Thursday, July 8 2004
Hi. I haven't been on for awhile. For some reason I was having difficulty with my email account. Something simple probably....but completely foreign to me.
A lot has happened since I last wrote. I am preparing to go in for open gastric bypass surgery. The doctors (personal and pulmonary) think it will buy me more time. Last year they figured I had from 3 to 15 years if things went well. Now its down to 4 so I guess its time. I'm not worried because I don't believe it will all come together. We tried this last year and the hospital wanted $16,000 down before surgery....like that's going to happen.
I just wanted to check back in and say hello and I hope that things are going well with everyone.
I'll check back after surgery or maybe right before to let you know how things are going. I say I'm not scared, but I lie sometimes. This would be one of those times.
Karen
Friday, August 13 2004
Hi. Its been a while again. I have been working on getting gastric by pass surgery. I think I am in the final stages of this crazy disease because I often cannot get up or stand for more than a few minutes. My pulmonary and family doctor suggested that weight loss would be my only chance to hang in there longer than a year or two. Wish me luck. Its a pretty scary step but I guess doing nothing doesn't sound like a very good idea either. I figure its always best to go for the brass ring if you are offered one. Otherwise life is good and each new day a gift. I hope to get on line and talk to a few of you soon, I've just been too exhausted to sit at the computer for long. My best to all. Karen
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