Hanging in there

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

New fundraising link

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

Sick yet again!

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

Hospital follow up

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…

Limbo sucks

Being in limbo sucks. I’m not sick enough for transplant just yet but I’m sick enough to be limited in what I can do. It’s like do I wish to get sicker so I can just get a transplant and be done with it, as if it’s that easy, or what. No I don’t want to get sicker but it’s bound to happen. It’s the nature of having cf. It’s a mind trip to say the least.

I’m having a hard time breathing today. Just feeling short of breath, so I’m hanging out on oxygen at 3L. I did go for labs this afternoon and they were good. My creatinine (kidney level) was good which is one of the major ones we keep an eye on with the colistin IV. I’ll have more labs done on Thursday before my clinic appointment that afternoon. I’m anxious to see what my lung functions will be. I don’t feel like they are great if I were to do them today but I’ve been wrong before. We shall see. I’ll update after my appointment.

Until next time…

Home from the hospital

I got home from the hospital on Tuesday afternoon.  It was a long week in lock up.  I survived though.  I have major steroid brain after having a lot of IV solumedrol steroid (80mg a day) while inpatient.  I am now tapering down from 60mg prednisone, a long taper.  I’m so fuzzy, scatterbrained, antsy and swollen feeling…so annoying.  I’m having a hard time even focusing on this post, I’m trying not to be all over the place…haha. Continue reading

Bone density results/weekend update in lock up

So I forget about the online results and notes that my hospital has and got an email that I needed to update it, so I checked it and lo and behold there were the results from dexa scan were there with a note from my doctor. Long story short I have osteoporosis now and not just osteopenia (the step before). I have to continue with the calcium and vitamin D and start to take the fosamax that I haven’t been taking for whatever reason, can’t remember. Continue reading