CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • 3 Month Pre-Transplant Checkup

    Surprisingly enough, it’s already been 3 months since my last transplant checkup. We were up bright and early…ok maybe not so bright, but it was very early.

    First stop was for an echocardiogram. They did the echo without contrast and then with contrast. Thankfully it was an RN that came in to start an IV for the contrast. I mentioned that I have a port. He said, “you have a port? Well then we’re using your port!” Hallelujah! Haha

    Next stop…labs and chest X-ray. All is good with my blood work. There were no changes in my chest X-ray as well. We grabbed some breakfast and wasted time until my next appointment.

    Next up…6 minute walk. Today I walked 1,087 feet. The goal is to walk at least 1,000 feet. My oxygen saturation was fine during the walk so I didn’t need any oxygen. I also didn’t need to take any breaks during the walk. During my walk in September, I walked 1,116 feet with no breaks and no oxygen needed. So it’s not a big difference between the two.

    After a gap in appointments that allowed for time to rest, it was onto the next one…chest CT without contrast. There were no big changes in my CT.

    Second to last stop was for lung functions. My FEV1 was 0.72L/28%. They are down from the last time I was here. The last time I did home spirometry on December 4th for my follow up after IVs, they were 29%.

    Final stop on today’s, very long appointment schedule, was with the transplant doctor. She said that my X-ray and CT showed the same damage in my upper lobes that it’s been and most likely some left over stuff in my lower right lobe from my recent exacerbation. I need to get my butt in gear and actually start exercising. I have to work through the fear of not being able to breathe when I exercise. The really bad asthma attack I had in March solidified my fear of not being able to breathe.

    Many people ask me, with my lung function this low, why am I not listed for transplant yet. The low lung function number does NOT automatically mean it’s time for me to be listed. There are A LOT of factors that come into play when making the decision to be listed. Yes, my lung function is really low but I’m still able to do a lot of things. I do need A LOT of breaks to catch my breath while doing things but I push myself to do as much as I can. I know that someday I won’t be able to do those things, so I will do them until I am unable to. If the frequency of my CF exacerbations increase, then that will be another factor to consider along with other things. So to answer your question, no 28% lung function does NOT automatically mean I’ll be listed for lung transplant.

    I understand that if you aren’t familiar with CF or lung transplant, this seems stupid. There is a reason though. The goal is to use up the lungs I was born with for everything they have to give. Post transplant is a whole new ballgame in many ways. So I am “A OK” with holding off as long as I am able to.

    I’m set to come back in 3 months which will be March.

    Until next time…

  • My Method For Staying Organized With All The Supplies While On Home IVs To Make Them Go Smoothly

    I had a CF friend suggest that I share how I store my IV supplies along with how I prep my doses after I showed her pictures of my system. haha.

    My first step when my supplies are delivered…I open ALL 972 of my saline and heparin syringes so that I get really frustrated and angry at those stupid wrappers (that RARELY make into the trash can because of the static cling) all at once instead of with every dose. The saline and heparin aren’t in sterile packaging so you can open them all at the same time and don’t have to wait until it’s time to do my doses. For me, opening them all at the same time helps with how I do things. (Picture below for proof that those stupid wrappers go EVERYWHERE)

    Next step…I put all of the saline, heparin, huber needles (port needles), dressing change kits, Tegaderms (I don’t use the cheap Tegaderm that comes in the dressing change kit, they irritate my skin), auto claves, end caps, etc. in the drawers where I keep all of my IV supplies. I also keep my non refrigerated inhaled meds, extra Pari nebs, travel nebulizers and much more in the same drawers. (Pictures below to show how I organize my supplies along with a picture of the all of the drawers. I got the drawers from Costco. Unfortunately, they are no longer available…sad Shannon)

    Now, onto how I do my doses. This is what works for me. It may not work for everyone but I thought it may give people an idea for a way to do things. I have quart size baggies with the dose times written on them with magic marker. I reuse the baggies over and over again. I don’t toss them each time, that would be silly with how many doses I have and how many times on IVs. I put 2 saline, 1 heparin and an end cap in the baggies so that all I have to do is put the dose in and go. It makes it super easy if I’m going to be gone at my dose time. I can toss it in my purse and go. Even when I’m home I still use the baggies so I can grab it and head to the couch so it’s there when the alarm goes off that it’s dose time. I have 2 days worth of baggies with dose times that are loaded with what’s needed for each dose on the kitchen counter ready to go. If I’m on more than one antibiotic, I use the same system. I just put in the number the of saline I need. If you are not familiar with SASH that you use when on IV antibiotics, here’s what the acronym stands for…SASH is saline, antibiotic, saline, heparin. If there is 2 antibiotics you add in an extra saline between doses. (Pictures below)

    The antibiotics are stored in the fridge. I take them out before the dose time so it gets to room temperature. If you aren’t sure how long the dose is stable at room temperature, Google is your friend. Of course, the IV pharmacy tells you to take your dose out 2-3 hours before it’s time to infuse…however…most antibiotics are stable for much longer. I personally take out my next dose when I get finished with the current dose with most antibiotics I’m usually on. The baggies I showed are for every 6 hour doses (obviously haha). Depending on the antibiotic…the doses are every 6 hours, 8 hours, 12 hours or every 24 hours.

    I think that covers it. If you have questions, ask away. You can comment on this post. Don’t worry when your comment doesn’t show up right away. I have it set to where I have to approve the comments to be posted. It’s a way to stop the spam comments. You can also send me an email at LTLHOOK@gmail.com.

    Until next time…