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.
I went for lung functions today to see where I am at before starting IVs. My FEV1 was 32%/.90L. Last time at clinic for my hospital follow up I was 33%, so no improvement since stopping IVs. I then headed to AIC (the infusion center) to get my port accessed and to get starting labs. I will be on Avycaz again which is every 8 hours and takes 2 hours to infuse via drip/gravity. Not thrilled about that because I prefer the IV eclipse balls but oh well. Hopefully I get better. They are only ordered for 10 days so we shall see if they kick in and do their thing quick. I am also back on prednisone for a week. It’s not as high of a dose as I was on in the hospital but I am also not as tight and wheezy as I was then either with the pneumonia.
I go to transplant clinic appointments May 21st so I’m trying to be decent by then. Maybe I can fool them into believing I’m not as sick as I am. haha. I am very much so having a “I don’t like CF” time right now. I looked back at lung functions from 2010 and I was in the 80%s. I was in the 50%s in 2016 and I am now in the low 30%s in 2019. I look back at my memories on Facebook and see how much I could do back in the day and it frustrates me that I can’t do that anymore. My neighbor from when we lived in MO asked what I was at when I moved there and that was when I was in the 80%s. She remembers me up on the roof putting up and taking down Christmas lights, cleaning out the drain in our driveway, trimming bushes, running around all over and more. I just can’t do that anymore and it is upsetting.
CF is progressive which mean it will slowly get worse over time. It is just amazing how fast it seems to have gone looking back. I am closer to transplant now and that is scary. There are just so many logistics that go into it that it is overwhelming. I will have to deal with it sooner or later and it seems that it will be sooner if I keep up this trend. Not a fan at all. I will need to start fundraising again at some point. Our medical coverage changed when Jason retired and we now have a decent out of pocket amount we have to meet each year before they will pay 100%. Plus we will need funding for living expenses and medical expenses post transplant as well. Oh my gosh I wish I was made of money and didn’t have to ask for help. This was supposed to be my mom’s gig. She said she would do fundraising because she wasn’t ashamed to ask for money especially for me…haha. Side note: going through all of this without her has been rough and I know it will get more rough as time goes on because it will become more intense. If you want to do a fundraiser for me just let me know or if you would like to donate you can do so through PayPal at http://www.PayPal.me/Shannonigans. I took down the GoFundMe for a few reasons. One being that it can count as income on my disability even though it is for medical use and goes into an account specifically for my medical expenses. It’s silly but I can’t afford to loose my disability which would also make me loose Medicare and that helps out a ton. I hate the way insurance is but, it is what it is and we have to play by their rules.
Until next time…