I have been on Trikafta for one year as of today. The major things I have noticed is that I am coughing less, less coughing attacks and weight gain. I have not gained any lung function like others have reported. I have been stable though as far as lung functions are concerned. I have been lingering around 35% FEV1 (give or take a few percentage points). I still however get very short of breath with exertion like walking in a store or. any long distances, moving things around the house, making a bed, carrying things, etc. I wish I could breath better because that is the most frustrating thing right now, but that’s life with CF (getting closer to end stage CF).
As far as transplant is concerned, I’m still too healthy to be transplanted. I am ok with that because I’m not mentally ready for it at this time anyway. According to one of my transplant doctors most CFers get listed around 20-25% lung function or less. So I still have a little ways to go. Mind you one bad exacerbation (illness) and I could drop lung function pretty quick. That’s about it as far as an update on Trikafta. I have a virtual CF clinic appointment on December 17th, just a check in/check up.
Until next time…
It’s been a little while since I have updated. I’m doing pretty well considering the state of our world with COVID. I had my 3 month Trikafta labs. My liver function was fine as was all of other labs especially my vitamin D level which was elevated last time. I will have more labs drawn in 3 more months. I also had my mammogram this week. The results will be sent to my primary doctor and to me within a week or so.
I don’t really have much to update health wise which is good. We are getting into the weather change from summer to fall which affects me every year. My asthma gets in the way and I start wheezing more and coughing more. With that said I have been more wheezy and short of breath with exertion. That’s about all I have to update on.
Until next time…
My previous counselor retired….insert sad Shannon. I had been seeing her for 4 and a half years. I last saw her at the end of July. Today I saw my new counselor. I really like her. I even was given homework.
My mental health is very important. When you have a life threatening genetic disease it is good to always have someone to talk to whether it’s a friend or family member you trust. I have plenty friends with CF which help a ton! They know what I am going through when it comes to CF which is great. I can bounce ideas and things off of them which is also great. With that said, having a professional person to talk to is always a good thing.
I see a psychiatrist that manages my antidepressants and anxiety meds but doing talk therapy helps in a whole other way. It helps me tremendously. You are not weak if you reach out for help. It is the strongest thing you can do for yourself.
Make sure you are taking care of yourself inside and out. If you are not feeling like yourself and you can’t seem to shake it, seek help. I am always here for you but professional help is always best.
My depression has been pretty stable even through this stupid pandemic. The anxiety is another story but I’m managing it with meds and talk therapy.
CF health update: I have been feeling pretty good. I had my yearly labs drawn along with my liver labs for the new CF med Trikafta. My vitamin D was a little elevated so I had to stop all vitamins, calcium and extra vitamin D. They will redraw my blood in 3-6 months to check my vitamin levels again. High vitamin D can cause problems with organs especially the kidneys which I have had issues with before. I was taking extra calcium and vitamin D was because of my osteoporosis diagnosis. I take Fosamax weekly for it as well. I do know that I am not having any of the side effects of high vitamin D which are nausea, vomiting, poor appetite, stomach pain, constipation and diarrhea.
I have been on Trikafta (the new CF drug) for about 10 months. My liver levels have been good every 3 months when they have been drawn. After being on Trikafta for a year I should be able to go to having labs drawn every year. There is a possibility they may want to check my levels more often since I do have nodules on my liver to make sure my liver enzymes are still maintaining. Who knows they could request a liver ultrasound at some point since that is what my transplant team does at my yearly check ups with them. I didn’t get to go to my May appointments because of COVID. I’m not sure when I will get them rescheduled. Maybe next summer when things “have calmed” down.
I think that is a good update for now. I do have a Telehealth visit for CF clinic on September 3rd. I’ll update if there is any thing to update about. haha
Until next time…
I have had a lot of people ask me my thoughts on wearing masks during this pandemic. I’ll start with this, it seems to me that wearing a mask is common sense where we are in this time but there are people who are refusing or saying they can’t because of “health reasons” or they “can’t breathe” in a mask. Continue reading
I now have a home spirometer which allows me to go do my lung functions at home. It’s pretty darn close to my clinic numbers which is good. Now I am able to do my lung functions at home before my telemed appointments and send them in so they can see them. I had a video appointment (CF clinic) last week. It went well. Nothing major to report. My lung functions are holding steady at 35% (per my home spirometer). Continue reading
I had an appointment today to check up on how I’m feeling since doing IVs and being on Trikafta for 3 months. My lung functions are back to my baseline. My FEV1 is 36%\1.02L. Before IVs it was down to 33%. I’m feeling better thankfully.
Now to what I’ve been asked about often, the coronavirus. We talked about it in my visit. They said to stay home as much as possible. Steer clear of over crowded places and of course hand washing and sanitize a lot. Use common sense. I was already aware this because of having CF and having to pay attention to hand washing hygiene, cover your cough, don’t go out if you are sick, avoid sick people. Yada yada yada.
With that said I will continue to live my life but will use common sense.
Until next time…
I have been sick since my birthday, so 2 weeks now. I tried oral antibiotics which didn’t help. I threw in the towel and called my nurse to get IVs started. I had a “sick visit” today since they wanted to see me and get lung functions done. My FEV1 was down a bit to .91L/33% (last time was 36%). I’m having more shortness of breath, fatigue and cough. It’s been a long 2 weeks of being sick and not feeling good. After seeing the doctor I went to the infusion lab and got my port accessed and had labs drawn. Now I’m just waiting for meds to be delivered so I can get started. I’ll be on IV Zosyn every 6 hours for 2 weeks. Hopefully 2 weeks is all I need. I think that’s all.
Until next time…
I turned 40 on Saturday the 1st!!! Go me for hitting a milestone in life with CF. When I was born the life expectancy was 12. It is now 37.5, I believe. So to say it’s a milestone that I made it to 40 is maybe an understatement. I am just so excited to be a 40 year old who happens to have CF and is still kicking butt and taking names! Continue reading
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’ve had a few people ask how I’m doing on the new medicine so I thought I would update. Today is day 14 on Trikafta, the new CF medicine. On day one I noticed a difference in my cough within about 4-5 hours from when I took my first dose. My cough was more “juicy” and productive. It was the medicine working to try and clear out the old mucus in my lungs. I was coughing more and coughing up more than usual as well. By day 3 my cough had changed back to my usual dry cough and was not very productive (my usual). I’m coughing less but still having coughing fits as per my usual but they are less intense and I recover faster. I also recover from being out of breath faster as well. My sputum (mucus) is lighter in color and thinner (not as thick and sticky). I’m not coughing as much at night, or at least I’m not waking up to my coughing as much. I have not had any bad side effects thus far. Yay! Continue reading