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.
My pulled muscle from the the beginning of April was getting better and then BAM I have another one. This one is worse than the last. It’s on the same side (left side). This one is just above the other one and radiates under my armpit around to my back. It hurts so bad to cough. I woke up around 3:30am coughing and in pain this morning. I had to do a breathing treatment to attempt to calm my cough enough so I could get comfortable enough to go back to sleep. I managed to do that. The pain could also be an infection brewing which I really hope it’s not because I have a very busy summer. I can’t afford to be in the hospital and don’t want to be on IVs.
Until next time…
Busy day today with all these appointments. First up was the 6 minute walk. My sats (oxygen) ran between 90-93 the whole time which means I didn’t need oxygen. That doesn’t mean I don’t need oxygen ever again. It means I had a decent day. Continue reading
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
Hello friends and family! Seems like I was just here updating you all. Well I am not feeling good again after only 2.5 weeks off of IVs. I started with the dry unproductive cough again which was what happened before I was hospitalized at the end of March. Along with achy and my chest is sore from all the coughing. Plus I still have the pulled muscle on the left side of my chest which seems worse the last few days. It hurts so bad to cough. I’ve been trying to brace myself when I cough but that doesn’t even help. It’s like something is stabbing me every time. Continue reading
Quick update: My lung function is up to 33%/.94 L from 21% when I went into the hospital. We are happy with those numbers. I was hoping for 30% or over so I’m happy. I did however pull another muscle from coughing and it hurts so bad. I was surprised I did that well on PFTs with it hurting so bad. It hurts all the time but much worse and stabbing when I move and cough. I’m getting some pain meds for it so hopefully they will help take he edge off so I can do a treatment and not be in so much pain. My weight is down just a tad but that’s to be expected when fighting off an infection like I am. I’m still needing oxygen at times. I’m trying to go without while around he house but when I’m out and about I’m needing it. Also I’m sleeping with it as well. I will see clinic in 3 months unless something comes up. I do see transplant clinic next month so I will update after that. Thanks for always checking in on me.
Until next time…