Looks like I forgot to update back in October. I wasn’t feeling good at the beginning of October so I did a round of oral Levaquin for 14 days and prednisone. It didn’t really do much but I held on until last week. I started with a sore throat and sinus drainage on Thanksgiving day. I went to the walk-in clinic last Saturday. It is always a gamble going to doctors that don’t know me or my CF history. I started another round of oral Levaquin (Saturday) and prednisone (Monday). I have a sinus infection that has made its way to my lungs. Today I had a regular CF clinic check up. My lung functions are pretty steady considering I’m sick. My FEV1 was .93L/34%.
My lungs sound junky, especially in the lower lobes. We decided to make a plan since I will be out of town until the 12th. I will finish the Levaquin and prednisone at the end of next week. If I’m no better by the time I get back in town I will start home IVs. I will do cefapime which is a push (just a syringe of medicine that is pushed in over 10 minutes) every 8 hours for 14 days. I will not be surprised if I end up on IVs because it’s been awhile.
I have been having random bruising the past few months so he put in orders for labs if/when I start IVs since they will be drawing labs anyway. My labs were all fine in September but things change. I’m also being referred to an allergy doctor to talk about doing asthma medicine shots, like Dupixent. My asthma has been a problem a lot lately. I’m hoping that will help with my wheezing and shortness of breath.
The national CF conference was not too long ago and they discussed doing an abdominal ultrasound every 2 years as a maintenance test just like the bone density scan. Mainly to look at the liver because the liver is not always good in people with CF. I think that sums up life to this point. I will update about how I feel and if I end up doing IVs.
Until next time…
I had covid last month and my lung functions went down to 37%, from 41%. I had a mild case of covid. I had a cough and I basically slept for about 5 days. Not much more than that. I did have the antibody infusion and a weeks worth of prednisone for the chest tightness.
Today was my regular 3 month check up. My lung functions went back up to 40% / 1.12L FEV1. I have managed to lose 5 pounds, which is good. My lungs sounded good, no wheezing, at least when he listened to me. We discussed the mental health side effect of the Trikafta that I have been dealing with. It has been worse since Covid as well. I have more blah days than I would like. I made an appointment with my psych doctor to discuss my meds and a possible change in one of them. That appointment is in 2 weeks. Maybe with a med change my blah days will be less and I will have motivation. Summer is my favorite season because of the ability to be outside in the sunshine which usually helps my mood.
I go back in 3 months for a regular check up. I will have my yearly labs drawn at that time to check my vitamin levels, liver function and kidney function, among other things. They check my sputum culture every clinic visit to see what bugs I’m growing in my lungs. I am usually growing only pseudomonas. We only treat it if I am having symptoms of an exacerbation. That would be increased cough, drop in lung functions, more wheezing/tightness, fever (I rarely run a fever when sick though), fatigue, lack of exercise endurance, etc.
All in all it was a good visit. We did talk about adding Spiriva (inhaler) for my asthma if I feel like I need it later. I didn’t want to add it just yet. I’m going to try using my albuterol inhaler before I do the treadmill to see if that helps with the wheezing while I exercise but that is the only change.
Until next time…
Today was CF clinic day. I am seen every 3 months, so today was a regular check up. However, I have been wheezing more so it was good timing. They had me do my lung functions at home on my home spirometer. My FEV1 was 35% which is my baseline (average). If you are new here the 35% FEV1 means I am using 35% of my lungs to breath. Most healthy people are 100% or more. They checked all my vitals and they were all good except that I had gained some more weight. Usually that would be a good thing for a CFer but I have gained quite a bit over the last 2 years since starting the new CF drug Trikafta. So basically they aren’t concerned with my weight but I am. The extra weight doesn’t make my breathing any easier that’s for sure.
We spoke about all my meds and what changes we could make, if any to change. They are going to try and up my inhaled steroid Budesonide (Pulmicort) in hopes that it will help with my wheezing. I have been wheezing a lot and getting out of breath easily with activity. My oxygen sats are fine so oxygen is not the answer. I am thinking it is a combo of the extra weight and the weather changing. The season changes mess with me every time.
They drew labs while I was there to check my thyroid, iron and vitamin levels to see if any of that could be contributing to why I’m always tired and sleep a lot. They decided to do an oral antibiotic, Augmentin, for 2 weeks and a prednisone taper over a 10 days. Hoping that combo helps with my wheezing and rattling in my chest. I see them back in December for another 3 month check up.
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 →
I contacted my transplant coordinator and had her ask my doctor about me trying Trikafta (the new CF drug) in regards to my liver nodules. Doctor said it is fine to take it we just have to monitor my liver enzymes closely. 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.