Well, it's been quite a week. The last time we visited, I had experienced an insane reaction to Flolan, the IV medicine I use that helps reduce my pulmonary hypertension symptoms. Well, a week later, we don't really have any answers. In a matter of a few hours I had to reduce my dosage from 50.5 ngs to 18 ngs. Since then I've reduced it again to 17 ngs. I don't know if this is going to be my "new normal," but, it is a good thing that I need less medicine!
I was also planning on switching to this new kind of Flolan that doesn't require me to include ice packs in the fanny pack that hold my Flolan pump and that I wear around my waist. But, because I appear to be "unstable" (no cracks from the peanut gallery) we're now holding off this switch to sometime in December. I'm sure we'll have a much better handle on things by then!
Plus, I'm actually feeling better! I certainly feel better than I did last week. But, I'm starting to think that I'm feeling better than I did BEFORE all of this happened.
Here's where it gets a bit frustrating...
I would really like to think that I've had a little miracle here and, that I really AM better. I'd like to think that maybe this Flolan did some remodeling of the cells in the pulmonary arteries (which is something that scientist are trying to determine)and that I am really, truly better!
But...since this came on so quickly, I'm concerned it can hit again and I'll need to start increasing my dosage again. This disease is really a roller-coaster ride. Although I've never had moments where things looked this good, I have had moments of improvement. Then, in a few hours, or days or weeks, I'm once again on the down-slide of the roller coaster.
So, here's the plan. Since I seem to be riding on the top of the roller coaster right now, I'm going to enjoy it and take advantage of it. But, I'm going to keep one foot planted on the ground so that when (or if) the ride heads downward, I'll be somewhat ready for it.
Does that make sense to anyone?
Well, I think that's all for this post. I woke up very early for some reason and now I'm having a hard time keeping my eyes open. So, I'm going to sneak in a little mid-morning nap.
As always, thanks for checking in.
Thanks for reading.
Thanks for your prayers and your friendship.
Much love
Annette
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12 comments to Hello! Happy Friday!:
I'm SOOOO glad to know you're feeling so good! Let's be very thankful of that as we all celebrate this Thanksgiving. Enjoy! Love, Donna
Ah, enjoy the smooth sailing while it's here! We think of you often and I hope you know you're always in our prayers. Like they say, some people touch our hearts and its' right there that they will always remain.
Much love to you my friend,
Lisa and the boys
We hope you continue on the upward swing and we will pray that you have a great Thanksgiving. That we would be so THANKFUL for. Please know we continue to pray for you! hugs, di
I'm glad you are feeling better. Hope you have a wonderful Thanksgiving .Now keep that foot planted and stay off the rollercoaster.
Annette -
So glad you are feeling so great. I hope and pray it continues. Have a wonderful Thanksgiving with your family.
Lin
Perhaps while you're feeling so good, you should call Bo and see if he has a position where you could be helpful.
Boomer....
Auntie Annette,
Although your blog may need a little updating, please know that there are many out here that are thinking of you and waiting patiently to read updated news. We know that you'll do it in your own time. Until then we'll just make up stories about you to pass the time. :-) On this New Year's Eve, our prayer is for many happy days ahead of you, and thanks to Him for sharing you with us. Our lives really wouldn't be the same without you!
Much love my friend,
Lisa
Dear Annette, just found your blog, please keep us informed about how you are doing. Much love from England.
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