Tag Archives: CF

One year on Trikafta

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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…

Just checking in

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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…

Mental Health

Posted in Blog Life, Health update by

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…

New Triple Drug for CF is Approved!

Posted in Blog Life, CF Awareness by

The new triple drug for CF has been approved!  You can read the FDA article here.  It is supposed to help about 90% of the CF population.  It is for my CF mutations (double delta f508).  The name of it is Trikafta (elexacaftor/ivacaftor/tezacaftor).  I can’t help but to think trifecta when I see the name…haha. Continue reading →

IVs it is!

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I tried the oral antibiotics route and it didn’t help.  I’ve been on them for about a week and a half.  All they have done is make for a yucky tummy.  With that said, I called my nurse for IV antibiotics.  I haven’t felt good for too long.  It’s always hard to tell if it’s a new normal or if I’m actually sick sick.  So I’m looking at this one as I’m sick.  I will be doing IV Zosyn every 6 hours for 14 days.  I will go tomorrow morning to get my port accessed and to get labs drawn for a baseline.  They also want an x-ray.  So I will be walking all over the hospital.  I’ve also been having bowel movement problems, as in not going.  You would think that with both strong antibiotics in my system I would be going non stop.  My body like to not do things the suggested way. haha.  I am drinking lots of miralax to combat the problem, which is no fun.  I hope to update in 2 weeks that I am feeling better.

Until next time…

Just a reminder about my www.COTAforShannonM.com fundraising link for medical/transplant expenses.  There is a fundraiser in the works for you Kansas City folks.  More to come on that.

Threw in the towel

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Hey all!  It’s been a little while since I have updated.  I have not been feeling well for a few weeks.  I have been coughing more, especially at night.  I went for lung functions and to give a sputum sample today.  My lung function is down just a tad.  My FEV1 was .95L/33%, down from 35%.  That’s the amount of air that I can push out in the first second after taking in a big deep breath.  Which basically means I’m using 33% of my lung capacity. Continue reading →

Yay for good clinic appointments

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Today I had CF clinic.  It was an all around good visit.  Sometimes I hate saying that I feel “good” because I know it won’t last forever.  First up was lung functions.  My FEV1 was 35%/.98L which is pretty much the same as last time.  My weight was stable at 123 and my pulse ox was 95%.  I met with the whole team of folks and was sent on my way.  Can’t complain there.  The pulled muscle I had FOREVER is finally better.  Short and sweet update!

Until next time…

Still fundraising for transplant at www.COTAforShannonM.com.  Thank you for everyone that has already donated, it is greatly appreciated.

Cough cough cough

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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 →