Wednesday was my follow-up at the Cleveland Clinic. It was a long day but fairly simple - a walking test, in which they measure oxygen levels for six minutes of walking; blood-work; and a visit with the doctor. The good news is that I appear no worse. So, we will continue the Flolan therapy as planned and hope for the best.
Thursday, as instructed by my doctor, I raised the Flolan at home. I took Tylenol beforehand, anticipating some pain. I got the usual flushing, headache, and some pain in my calves. But, overall, it was not as bad as when I was in the hospital. That may be because they were upping it about one time each day, where here at home they may up it once a week. The jaw pain while eating (at the beginning of meals) also increased.
Being tethered to an IV pump is awkward. I'm still dependent on the oxygen, too. So, wherever I go I feel like I take up a lot of space, encumbered with tubes and other breathing paraphernalia. I must look a bit like Doctor Octopus and sound like Darth Vader. So, needless to say, between that and my lack of energy, I don't get out much.
My husband and I mix my medication each evening. We timed it the other day and found it takes a little over 32 minutes to mix and change the cartridge on the pump. And, that was on a good day. Once a week I have to change the dressing and one of the connectors that go on the Hickman. And, three times a week I have to change the extension tubing. To shower I have to cover the Hickman site and hang the pump from the towel rod.
Again I cannot express how thankful I am for all the help from family and friends. I hope everyone remembers that this is going to be a long process so please do not hesitate to keep reminding us that you can help.
And for now, I will leave you with a link to an article about Carson Smith, a wonderful lady who is also living with PVOD. The article is six years old and I am happy to report that Carson is still doing well and has been stable on medications.
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