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.
Today I had my 3 month check up. First stop was the lab for my yearly labs. I managed to con my nurse into waiting on my glucose tolerance test for awhile. I hate that test. It upsets my stomach and sometimes gives me a headache from all the sugar. Plus being stuck 3 times in the hand (my arms are too scared for blood draws) in 3 hours sucks. Next stop was pulmonary function lab..My lung functions were basically the same. My FEV1 was 39%/1.08L. Last time was 40%. So holding steady is good. Last stop was clinic…oh yeah I was weighed in the pulmonary lab and I have lost weight which is good. With Trikafta I gained a lot of weight. I think I’m down about 10 pounds. I’ll take what I can get! I haven’t really been trying that hard. I did start calorie. counting and watching my diet but I saw that I was rarely going over my allowed calories so I stopped counting. haha. My doctor said my lungs sound good and I look good. My oxygen company contacted me to let me know it was time for my reevaluation to see if I still need oxygen. I haven’t used oxygen in about 2 years so I will be saying bye to my concentrator and portable oxygen. I’m ok with that because I wouldn’t fail the 6 minute walk showing I need oxygen. I just liked having it as a crutch just in case I was having a bad day. I can always get it back if needed. I see him back in 3 months for another regular check up. Now I just wait for my lab results.
I know I haven’t updated in awhile but count that as a good thing this time. I did have a birthday. I turned 42 on February 1st. When I was born, the life expectancy was late teens. So to say that I am very proud to have turned 42 is an understatement. It hasn’t always been an easy road but I’ve kept pushing.
Since 2016, January is not an easy month for me with the anniversary of my mom’s passing. By the time my birthday comes I’m ready to be happy. It’s still a hard time without my mom because my mom wanted nothing but the best for me and was my biggest supporter. I keep fighting in her memory. She is greatly missed.
Now for a health update… I am doing well for the most part. The weight gain I have had from Trikafta is not fun but it is what it is and I have to endure it. I have been sleeping a lot. I take after my mom and grandma when it comes to being a night owl and sleeping late in the mornings. I have to get up to take my morning meds and do a breathing treatment but I have been laying back down when I’m done if I have nothing else to do. I have had some blah days mentally/emotionally. I do have SAD ( Seasonal Affective Disorder) or commonly known as the winter blues. It’s real and it sucks. I need sunshine…real vitamin D and warm temps. Granted here in Tennessee we don’t get crazy cold and lots of snow so I’m not complaining too much but I’m still ready for summer. I don’t miss midwest (KS/MO) winters what so ever.
I think that’s a good update for now. 😆 I have a CF clinic appointment in March, I’ll update after that.
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 →
The wait is finally over. Trikafta was delivered today! I will start it tomorrow morning. Now here is to hoping that I tolerate it well. I will update after I’ve been on it for a little bit so that I have something to update about. haha
As I sit here doing a breathing treatment, which includes the vest along with DuoNeb, Budesonide and Pulmozyme, I think how stupid all of this is. I know it’s what I have to do but the vest makes it so hard to breathe when I already don’t feel like I can get enough air in. Let me rewind a minute…I called my doc for a prednisone burst/taper for my severe tightness and wheezing. I finished my taper of prednisone yesterday. I’m not feeling better so I called back and asked for antibiotics. I started oral Bactrim and Levaquin yesterday. I have a CF clinic appointment on Thursday so we shall see how I am then. Continue reading →
Whoop Whoop!!! I made it to 39! When I was born the life expectancy was 12 years old. I have a little ways to get to the new life expectancy of 47.5 (I think that is what it is now, it keeps changing). I got a great birthday present of getting off IVs yesterday. It was a long 3 weeks of antibiotics. I am feeling pretty much the same which I will take because I am not worse. Of course I would like to be better but now since my lung function is low I don’t get much bump from antibiotics but I maintain. I have a clinic appointment next week. I’ll update after that appointment to let you all know what my lung functions look like and what the doc says.
Today was a regular CF clinic check up. Unfortunately I haven’t been feeling the best for about a week. I have been coughing more and coughing up more as well as super tired. This all could be playing into my depression and antidepressant med change. Continue reading →
We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday. I realized my happy place, the beach, is hard for me to get to with all the walking. I had to take breaks walking the boardwalk and then on the beach. Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf. I went in the water and that wore me out as well. Holding myself steady in the waves was hard and took my breath away. With all that said the beach is still my happy place even though it is hard on me now. I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. 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 upwas 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