Freedom is being needle free!! Well I know there is much more to freedom than that but right now that is my freedom. I finished 4 weeks, actually 29 days, of IVs yesterday. It is so nice to be free from IVs. Now I know you are asking the million dollar questions, “How do you feel? Do you feel better?” Better is a relative term. I feel “better” in the big picture. The IVs take so much out of me, wear me out and drain me. Having IVs every 6 hours means that you don’t get much sleep or at least you only get to sleep in spurts. It will take me a few days to a week to get back to somewhat normal feeling in the sense of not being so drained, or that is my hope. As far as my lungs and how they feel, they feel better. I am not coughing as much but still having my coughing fits and mornings are the worst. Mornings are the worst and will always be the worst because when I lay down to sleep all of the junk in my lungs settles on the lung wall. When I toss and turn or sit up it all starts to move and irritates my lungs, triggering coughing fits. With that said, if you ever call me in the morning and I am still in bed I may not answer it because I will start coughing and it will not be a productive conversation and coughing in someones ear and not being able to talk is not one of my favorite things to do.
My husband and I have had many conversations about this being my new normal and just having to go with the flow. As CF progresses my cough will change and get worse, my energy level will decrease and I will need more rest. It is hard for me to accept that I am not super woman! My husband told me I am retired from mowing the lawn unless we get a rider. Mowing the lawn is one of the things I don’t mind doing because I am outside in the sunshine and I’m not doing organized exercise but still exercising. I have said it many times that I will continue to do all that I can because there will be a time that I can’t do them anymore and I want to enjoy it.
Okay, let me turn this conversation to a more positive thing…hahaha. I am very thankful that IVs, even 4 weeks, still are doing the trick. I am very thankful that I have dodged the Club Med bullet for the last 13 months that we have been in TN. I know it won’t last forever but I will defiantly enjoy it while it lasts. TN hasn’t been the nicest on my lungs but I still love it here. It is beautiful even though I want beach the mountains are breathtaking. I love that I am still wearing shorts and flip flops in mid September. It is always a sad day when I have to retire the flip flops for the year and put socks and shoes on but I hold out as long as I can. If you know me at all you know I am not a fan of cold weather. I need sunshine and natural vitamin D to survive!
Upcoming stuff: Monday I have my yearly glucose tolerance test to test me for diabetes. CF related diabetes is very common due to our pancreas not working right. I am trying to ward it off for as long as I can. I don’t want another thing to deal with, I have enough right now. Monday I also have my yearly bone density scan to see where I am at on the osteoporosis scale. Osteoporosis is very common in CF due to the lack of absorption of vitamin D and calcium. I have been osteopenia in the past but gained some bone density back after increasing my Calcium. I have a CF clinic appointment on October 2nd. I purchased a digital peak flow/spirometer that measures your FEV1 to help me monitor trends not necessarily numbers. I will take it with me to clinic and use it after I do my lung functions on the clinic machine to compare so I know plus or minus what it rates. I have used it once and it showed an FEV1 of 1.47L and that is not what I am used to seeing but my last time in clinic I was barely 1.50L. The FEV1 is the amount of air that I push out in the first second. Predicted for a healthy person my age, sex, height, weight is around 3.00L which means I am at about 50% of predicted.
Lastly I wanted to share video of me deaccessing my port so that you can what that looks like since I shared a video of me accessing my port.
Until next time…