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Patient Diary -- Eileen Metz |
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March 16, 2000 I'm a 48 year old mother, wife, sister, niece & aunt. A partner & VP in Sales & Marketing of a new business (2 yrs) Very aggressive persona, need it, want it, gotta have it, don't care how you get done, just do it, mentality. So........ being diagnosed last Friday (03'10'00 )took me by surprise. Sept 30 '99 I had a bad case of the flu, within a few hours I difficulty breathing. Went to the ER, diagnosed with Pneumonia. 4wks later, Still SOB. The Pulmonary Dr first told me I had PH from the Echo results. Reffered me to see a Cardiologist. I Couldn't get in at first, So I 'd show up at the office with a box of chocolates, (with amazing results!) I pushed for tests, appointments, I drove the office crazy. (Still bringing candies to ease my abrasive behavior) PF Test,( nornal,) Stress test, (normal,) Pulmonary Stress test, (below normal no big deal!) Muga, VQ Scan (it's stress they said!) I decided to get another Cardiologist. (I also pushed my way in with Chocolate) within two weeks, I was again re-tested, Echo came back normal. I was put on BP meds - diagnosed with High BP (firt time in my life, always Low BP) Had an angina attack, went in for Cardiac Cath, i.e. Pulmonary Hypertension! I need to know if there are any PH Doctors in South Florida? So far I've joined PHA and ordered some books. So now I am driving anyone who will listen crazy! (sorry no chocolate thru email!) Needless to say my life will continue to change. I started my own Ph diary in December, charting all my new emotions. It's a great release for me. And so was this........ Thanks for listening. Ei52
March 17, 2000 This is incredible. Your family and friends look at you and cry! Here on my diary page I can vent all I want. No one gets mad at me or lectures. Cool! I like this. Thanks, Ei March 20, 2000 Trying to find a PH specialist is more difficult then expected. Not getting much local feedback. Looks like we're going out of town for this one! Wonder if there's a Cruise ship that will take me there? Ei March 21, 2000 I went the cardiologist today and forced him to change my meds,to calcium channel blockers. He kept telling me-You don't have PPH, You have SPH! Relax... Sooooo I kinda yelled & Said "So what's the freakin difference?" I can't breath on current meds.. Please try This with me! So he did and I'll keep you posted on SOB. I'm still in search of a new Dr.! March 23, 2000 Todays reaction to my new meds is funky. Puffy, tired & ugly.... Had an appt this morning with Psychologist, I'm predicting some emotional dysfuction for the near future. She's a great help. March 24, 2000 I found a PH Dr in So Florida @ Mt Sinai, Miami. Dr. T Ahmed. They told me he specialized in PPH for 15 years!Otherwise I'm on a wait list For 3 months with the Mayo Clinic. Day 4 on new meds, today was a fair day, my SOB seems noticeably better. Thank God. March 28, 2000 When I first decided to do the diary, I was Full of things to say. I even wrote to PHCentral asking why more people haven't updated their pages.I think I know why. I know I was just told about my disease, but today I feel like someone pulled the plug. I'm beat! I could lay down and sleep for 6 months! Well maybe just a little nap. So I can only imagine how others who have progressed with Ph are feeling. Some days my lungs feel like I've inhaled smoke from a forest fire. I'm Having a let down day. But! This too shall pass. Ei March 29, 2000 Having a puffy day again. Looking forward to seeing PH Specialist tomorrow. April 01, 2000 Well..... I went down to Mt Sinai on thursday and repeated every test for the 2nd & 3rd time. I'm now scheduled for Another Cardiac cath on Friday. Ugh! Only this time measure my pressures during exercise. Oh! Can't wait!!! How exhausting! Ei April 03, 2000 I've been off the CCB's for 4 days & I'm not breathing too well. I have a huge presentation on wed in Maryland, I'm a little apprehensive especially with the SOB. Wish me luck! Ei April 06, 2000 Well I was able to catch my breath & give a dynamite presentation with no sweat! The flight was alittle bothersome, and a feww times during my travels I was SOB. I'm off meds now 8days, tomorrow the cath. Will keep you posted Ei April 10, 2000 You are not going to believe this! I was told my pressures are normal! they think I had a pulmonary embolism, that's why the first cath reading was high? I'm totaly confused, how could it take 6 months of mis dx & 2 cardiac caths and then guess it "was" a guess! So a clot can just sit and cause SOB! 2 VQ scans didn't show anything..... How does this happen? honestly,I'm thrilled, & afraid to believe it. Months of BS Deciding who to leave your Star Wars collectables to when...... I've had alot of prayers said on my behalf, perhaps they were heard? Will keep you posted Ei52 |
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