Saturday, May 9, 2015

CF Awareness Post Question Day 9

Today I am taking a break from a question and posting a fact. Remember everything I post pertains to me mostly. Each person with CF is different, just like each person is different.

Today I am going to explain what lung function is. Thanks to a fellow CF friend for posting this and letting me borrow it from Facebook.

First a lung function, or PFT (pulmonary function test) is defined as: Pulmonary function tests are a group of tests that measure how well the lungs take in and release air and how well they move gases such as oxygen from the atmosphere into the body's circulation.

This test gives the Dr and Respiratory Therapists a reading of several different numbers. There is one number that gives the "over all" percentage of how the lung is functioning.

Now for me personally my "baseline" (what I aim to be at my clinics) is mid to upper 30s. I have hit as high at 37% in the past year, but I hover closer to 35%. This may seem very low compared to 100%, and it is. But there is a lot of factors that account for how you feel when your lungs are at this point. For me, I don't always feel like I have 35% FEV1. Some days I feel like I have 25% and others like 50%. My energy levels can be great really helping me feel good, or I could be exhausted all the time and feeling crappy.

Right now, as I write this I feel great. But I have a secret weapon for a week - Prednisone burst. This little steroid is a godsend for some people. After transplant is helps ward off rejection. In people like me, it helps open the airways and gives me energy. I was helping a friend yesterday and she asked a great question about it. She wanted to know if the week I am on prednisone is a tease - like I feel great for a week and then back to normal. It is and it isn't. Lungwise it is a tease in a sense. Sometimes I get a huge boost from it and feel phenomenal, and other times I get a small reprieve and it doesn't faze me when I stop. Instead I take full advantage of how I feel that week. I do more, sleep less (drug induced insomnia lol), and overall get so much accomplished that after I stop the meds I am happy to sleep for a few days to rest up. But I also forget I am on prednisone and think "wow I feel so good maybe I am turning a corner." And this can be the hard part. Because then you realize you are on drugs to help you that you have to stop in a few days, and then you stop and go back to normal and know that it really was the drugs.

For those that may be wondering, no I cannot be on prednisone all the time. After transplant you need it, and it can causes issues with long term use. Most doctors don't like to use it as a maintenance medication pre-transplant unless absolutely required. And I don't require it all the time, though sometimes I wish I did lol.

If YOU have any questions feel free to leave a comment asking. Each day I will post the answer to one question.

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