Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading
Whoop Whoop!!! I made it to 39! When I was born the life expectancy was 12 years old. I have a little ways to get to the new life expectancy of 47.5 (I think that is what it is now, it keeps changing). I got a great birthday present of getting off IVs yesterday. It was a long 3 weeks of antibiotics. I am feeling pretty much the same which I will take because I am not worse. Of course I would like to be better but now since my lung function is low I don’t get much bump from antibiotics but I maintain. I have a clinic appointment next week. I’ll update after that appointment to let you all know what my lung functions look like and what the doc says.
Until next time…
I have been really short of breath and coughing more so I made an appointment with CF clinic. Today was the day. I did lung functions and they were actually up since I was last seen in November. My FEV1 was 37%/1.05L. I decided to do IVs in hopes of that I caught whatever this is before it got bad. I will be on cefapime every 8 hours and amikacin every 24 hours and have labs twice a week. I have a follow up appointment on February 7th.
Until next time…
We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday. I realized my happy place, the beach, is hard for me to get to with all the walking. I had to take breaks walking the boardwalk and then on the beach. Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf. I went in the water and that wore me out as well. Holding myself steady in the waves was hard and took my breath away. With all that said the beach is still my happy place even though it is hard on me now. I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. Continue reading
I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.
The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha
Until next time…
It was a good clinic visit today. It’s always good when they say that you look the best they have seen you look in awhile. I don’t know if I can attribute that to the Symdeko or just feeling decent. I’m not trying to sound like a doubting Debbie but I just haven’t had any major “ah ha moments” to convince me it is symdeko but I should stop that way of thinking. It is obviously working for the better, especially since I haven’t had any of the side effects. Continue reading
There are some days that I wish CF didn’t exist. Today would be one of those days. Don’t get me wrong I wish it didn’t exist at all but when I’m having a particularly not so good day, it is fresh in my mind that I wish it didn’t exist. Continue reading
A few months ago I shared about the new CF drug Symdeko (Symdeko post). After much tossing around of the idea of taking the new drug I finally decided to give it a try. I started the drug 3 days ago. It is twice a day and I have to take it with a meal/snack containing a good amount of fat to help it absorb. Continue reading
I had CF clinic today to follow up from when I was on IVs. My lung functions were up a little to 30% / .87L FEV1. We talked about this range being my new normal (baseline) for lung functions. Thanks virus, thanks a lot. I shared with him what was done at Barnes for my transplant appointment, some of which he already knew. I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri. They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. Continue reading
I remember when I could do a lot of things that I am unable to do now. Unfortunately, that is only going to get worse as time goes on and my lungs get worse. It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t. If that makes sense. Continue reading