Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 I got my first shipment of Flolan today. For one month, three giant boxes. We broke it all down into daily treatments and bagged it. Took three of us about 1/2 hour. It takes about 45 minutes to an hour to mix the meds every day. It comes in powder form and has a special dilutant. It only has a 48 hour shelf life, refrigerated. 3 minutes life inside the body. Hence, the constant infusion. We have to flush out the lines and all that. It is on the inside of my arm so I can't do the dressings or flush the line. My husband and daughter do that. A nurse is coming once a week for 3 weeks, then we are on our own. After about 6 weeks, I will have a port in my chest. At that point, I can take care of it myself. We still are having trouble learning how to do all this. We have a cheat sheet that helps us. Setting the computerized pump is the hardest part. I am way more nervous than my helpers. I have been the slowest to learn. Probably from being so drugged. Today the headaches have been less, so less drugs. I have been in a good mood, happy and hopeful. I have had some 02 plummets. Shouldn't be doing that, so don't know what that means. I tried getting dressed yesturday, but took the clothes back off and put the jammies on. What's the use in being uncomfortable. I was trying to get washed and changed this morning. I got my bra, my Flolan tubing and my oxygen tubing all intertwined and couldn't get untangled. and I got so tickled. It is like living in a spiderweb. Some woman from my insurance co. asked me yesturday what my long term goals were. ????? Who comes up with this stuff. I told her mine were to live until bedtime. Idiots. I guess I am the only one on the group to use Flolan. I had never heard of it. It isn't a new drug, just rarely used. Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 I will not forget you...Behold, I have engraved you on the palms of my hands. Isaiah 49:15-16 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.