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LadiDi

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About LadiDi

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  1. I am home, got home Sat.night. The side effects are horrible. headaches, severe nausea, jaw pain and flushing. each day they want to raise my dosage. The side effects subside over time but then each day they raise and they come back. They say eventually they will go away all together when I get to a high enough rate. So, I am still needing a lot of help at home mixing my daily does of Flolan and changing my cassette on my pump every morning. I am very weak overall. Thank you all for all of your encouragement.
  2. I was on Cytoxan and Prednisone for many months to treat my multiple myeloma and my sccleroderma. It helpped my cancer count but side effecs were kinda hard. Nausea, headaches .
  3. I found out this morning that I will be admitted to ICU tomorrow morning and they'll start this new breathing drug little by little by regular IV until it is up to the level they hope I will tolerate 24/7 in a catheter in my chest connected to a cassette filled with sterile mixed drug that I will change once every 24 hours and cary on my side with ice packs 24/7. I will be in the hospital 4 days. once I come home I'lll be back and let you know how it is going.
  4. I like the way you think, but there are days it gets the better of me and I am so happpy to have found you all.
  5. the drug is by IV cateter in my chest 24/7 every day
  6. My name is Diana but all my friends call me Di and so my web name. I live in Oregon about 90min inland from the coast in a beautiful valley. I have been diagnosed with scleroderma for about 2 1/2 years although some of the CREST symptoms have been around for 10 or more. I have developed severe pulmonary hypertension secondary to the scleroderma and had a pulmonary embolism a couple months ago. I am having a very hard time recovering from the whole thing. I can no longer bathe myself, dress myself or drive myself. Now I am getting ready to start on a PH drug Flolan that is an IV 24/7. I am already on oxygen 24/7 at the fairly high rate of 5 ml. These past few weeks I have been an emotional wreck and have started counseling and new anti-depressant and anti-anxiety drugs. It's only been 2 weeks on them but I think they are helpiing especially the anti-anxiety drug. Pardon my poor typing, my fingers are very crooked and painful and getting worse as the minutes pass. So this takes me a while and lots of corrections. But I'm not giving up.
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