Today I had CF clinic. It was an all around good visit. Sometimes I hate saying that I feel “good” because I know it won’t last forever. First up was lung functions. My FEV1 was 35%/.98L which is pretty much the same as last time. My weight was stable at 123 and my pulse ox was 95%. I met with the whole team of folks and was sent on my way. Can’t complain there. The pulled muscle I had FOREVER is finally better. Short and sweet update!
Until next time…
Still fundraising for transplant at www.COTAforShannonM.com. Thank you for everyone that has already donated, it is greatly appreciated.
I finished IVs on Friday morning. It was a long 10 days of a 2 hour infusion every 8 hours. That’s 60 hours being hooked up to “the pole” in the 10 days, which doesn’t include all the breathing treatments, pills and time hooked up to oxygen. Yes, taking care of myself is a full time job. It is tiring at times and annoying most of the time. I do try and look at treatment time as a positive thing. It is sustaining my life and I get to update you all on this here blog while doing my treatments along with trolling Facebook. Continue reading
Hello all! I have been in a slump when thinking about transplant stuff. It is just so overwhelming. I feel like when I was writing “my book”/my life story (link at the top of the blog page for all chapters) I would write like crazy and then take time away from it for awhile then go back to it. That’s how I feel about thinking/doing things for transplant because it is so overwhelming. There are so many logistics that go into it that it makes my head spin. Fundraising is just one part of the puzzle and it’s a big one. Funds raised will help with housing in St. Louis after transplant, house bills in TN while away in St. Louis, food, parking, hotels, hospital bills, medicine copays and much more. There are things that will pop up that we didn’t even think of I’m sure and we just want to be prepared as much as possible. We will have to be dealing with me, my health and recovery and don’t want to worry about the financial part of things. I just want to thank you for all of your support and love over the years. Continue reading