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 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
Today was CF clinic day. It was my normal 3 month check up that turned into a hospital/IV follow up. It seems to happen that way most of the time. I have dropped the prednisone weight I gained which I’m happy about because 5 pounds in one week was a bit much…haha. No worries, I am not losing weight per se, I just had gained weight from being on high doses of prednisone. I am just fine in the weight department. Continue reading
I got home around noon today from the hospital which is record time for a release. It helped that I didn’t have to wait for my IV antibiotics to be delivered to me at the hospital. They delivered them to the house which is nice. Let me recap the stay for ya… Continue reading
Today I had a check up since I’m not feeling better after 6 days of IV antibiotics. My lung function was down again to .88L/31% FEV1. I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then 10mg for 3 days. I was hoping that the taper would help with the wheezing and chest tightness, so far it’s a no go. We decided that if I am not better over the weekend I am to call my nurse to be admitted. They want to add Colistin to my IV antibiotics but want to start it inpatient because of the history of kidney problems with it. There was that one time that my creatinine shot up to 7.0 with the normal range is up to 1.1. Therefore we have to watch it every time I’m on it or any IV antibiotics for that matter. So I will take the weekend to rest, do lots of treatments and hydrate and hope I feel better. However I kinda feel like I am prolonging the inevitable of an admission. Might need the heavy hitters to knock this one out. I’ll update next week.
Until next time…
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.
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