Today I had CF clinic. Thanks to Trikafta my weight is up, not that I want it to be. haha My lung functions are holding steady at 37%/1.06 L FEV1. In October they were 36%/1.02 L FEV1. It is unclear if I will gain any lung function on Trikafta, only time will tell. I’m just happy if I hold steady and put off lung transplant as long as possible which gives us more time to fundraise. The hope is that Trikafta will extend the time between exacerbations (lung infection) needing IV antibiotics. Continue reading
I got home from the hospital on Tuesday afternoon. It was a long week in lock up. I survived though. I have major steroid brain after having a lot of IV solumedrol steroid (80mg a day) while inpatient. I am now tapering down from 60mg prednisone, a long taper. I’m so fuzzy, scatterbrained, antsy and swollen feeling…so annoying. I’m having a hard time even focusing on this post, I’m trying not to be all over the place…haha. Continue reading
Today was originally a regular follow up but became an IV check up. All looks good. My weight is down a little from all the antibiotics wreaking havoc on my gut. My FEV1 was down a smidge to 34%/.98L but still around my baseline. I also had a dexa scan (bone density). I have a dexa every 2 years to check my bone health. In 2016 my scan showed osteopenia which is a step before osteoporosis. It just means that my bones are a little weak. With CF I don’t absorb nutrients normally because of my bad pancreas therefore I have to take vitamin and calcium supplements. Continue reading
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…
I saw my psych doctor today to talk about my depression and anxiety. My antidepressants aren’t helping anymore. I’m on Effexor and have been for many years and it’s not working for me anymore. We are going to wean me off the Effexor and starting Trintellix (a newer med). It’s not going to be an easy time weaning off the Effexor because I have been on it so long. I pray that it is an easy transition onto the new med. I need a break through. I deserve a win in this one. 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…
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 spent the day at the hospital with 2 different appointments. First up was my CF clinic check up from my 21 day course of IVs. My main complaint today was the continued pain in my right side. My appointment was at 9:30am and I was finished at 12pm. A lot of people complain about waiting at doctors offices. I, on the other hand, am used to it. It is par for the course when you have CF (or any other chronic illness). I respect that my doctors and nurses take their time with their patients because that means they will give me all the time I need when it is my turn. My appointments are also long because I have to see other people during the visit, i.e.; respiratory therapist, dietitian, social worker, nurse, nurse practioner and/or doctor. I am now a professional “waiter” by this stage in my life. Continue reading
Saturday will be 14 days of IVs so I called my nurse to let her know how I am feeling. I am still having the pain in my lower right side (just at the bottom of my ribs) that has been there for a few weeks. I’m convinced that my right lung has it out for me. It seems to be where most of my infection is, I fracture ribs from coughing on that side and I also get random pains on that side. Maybe it’s my special party trick. Continue reading
WOW! We had a great tournament that raised $1,508!!!! I’m amazed at the turn out once again. We have great friends that offer great support. We appreciate it very much, it means the world to us. Continue reading