I update www.cfhappens.com with all my health updates and I totally forget to update here. I will get better at updating here!! Here is the last 6 months in as short of a post as possible, year right. haha.
We went home to Kansas City in September for a quick weekend trip to see family and so my husband could go to the Chiefs game with his brothers, it’s a brothers tradition to go to a Chiefs game every season.
October was a busy month for us. We were finally able to take our trip to Hawaii that was supposed to be our 10 year wedding anniversary trip, 3 years ago (thanks covid and the pandemic). We had rebooked the trip four times since 2020. We were finally able to make it happen on the fourth time. I have family that lives on Oahu and Kauai so it is always so good going to Hawaii and being able to see and actually hug my family. We had the best time!! We are already planning our next trip back. Hawaii is my happy place, well basically anywhere with a beach.
We were back in Kansas City mid November for my dad’s 70th birthday. His wife threw him a fabulous cowboy themed party. One of my favorite pictures of my dad as a kid is him in his cowboy getup with his boots on when he was able 3-5 years old maybe. It was great getting to celebrate him and see people I haven’t seen in quite a while. We squeezed in as much family time as we could for another quick weekend trip.
December 11th I received my first Reclast (once a year) infusion in the infusion center at the hospital. The infusion went great and I was out the door in about 20-30 minutes. Within 2 days I started having a burning sensation in my left femur. Most reactions/side effects with Reclast show up in the hips and jaw with pain. Side effects usually last about 2 weeks, get better and go away. Well here we are 13 weeks later and I’m still dealing with the burning sensation in my left femur. It is very uncomfortable. I had a X-ray of my left thigh on February 26th and as expected it showed NO abnormalities. Next step is getting a MRI. I’m currently waiting to hear from scheduling to see when I can get it scheduled. They are checking for avascular necrosis which is bone death due to lack of blood supply. AVN is usually caused by long term use of IV and/or oral steroids (usually known with extended use of higher dose steroids, I have taken high doses of steroids but not long term), excessive alcohol use (I’m not a drinker) and long term use of bisphosphonates. Oral Fosamax, IV Prolia and IV Reclast are in that drug class. I took Fosamax for the recommended 5 years and stopped. I only had 1 infusion of the Reclast which is yearly. So who knows what my body is doing which is nothing new because my body doesn’t play by the rules anyway. I’m usually in the “less than 1%” class of the drug reaction world. haha
January was busy with the normal day to day doctor appointments (taking care of me is a full time job, it just doesn’t pay well haha), house maintenance appointments, lunch/dinner with friends and more.
February 1st I turned 44!! I love my birthday so much because I’m still here to celebrate it. I personally think it should be a national holiday at this point. haha. Once again February was filled with the normal doctor appointments, house stuff, brunch/lunch/dinner with friends. Of course the Chiefs won the Super Bowl on February 11th!! With being born and raised in Olathe, KS (aka the Kansas City area) our love of KC sports is strong, especially with the Chiefs, KU and the Royals. East Tennessee is definitely home now after being here for 11 years but KC will always have our heart.
February 15th I had my regular CF clinic 3 month check up. All was pretty good and stable for the most part. I’m still rocking 32% lung function (FEV1). We did add Yupelri (a long acting bronchodilator prescribed for COPD patients) on top of the rest of my inhaled meds (DuoNeb, Pulmicort, Brovana and Pulmozyme, all nebulized). I have been having a lot of shortness of breath and have had to take LOTS of breaks when doing housework and walking. I wanted to add something to help extend my time between treatments that helped my shortness of breath. As you know I have really bad asthma and the bronchiectasis doesn’t help at all with the tightness, wheezing and shortness of breath.
March brought a trip St. Louis to be seen by my transplant team at Barnes-Jewish Hospital for my 6 month check up. Unfortunately I had sharp lung pain pop up on Monday afternoon. All my appointments at Barnes were good and I’m holding steady. My chest X-ray didn’t show anything out of my normal bronchiectasis and scaring from CF. I was able to walk about 300 more feet further on my 6 minute walk. I didn’t need to stop to catch my breath (I get to walk at a normal slow pace for me, which isn’t fast at all) and I didn’t need supplemental oxygen (my sats stayed around 98%). I don’t usually have issues with my oxygen saturation except when my asthma is really bad and I end up in the hospital but after a few days on O2 and high dose steroids it gets up and stays up. My CO2 was good (ABGs are NO fun at all!). My labs were all good. My lung function was steady at 32%, same as last time. my doctor said keep doing what I’ve been doing. I’ll see them back in 6 moths which is September. These 6 month check ups are more of keeping all my testing up to date and having them set eyes on me (in person) in the off chance that I were to have a rapid decline and need to be listed quickly. This way we’re not playing catch up needing to get vital testing done before being able to be listed with a time crunch.
The lung pain that popped up last Monday is still here and has gotten worse. I have pleurisy which I’ve had before and it is no fun and is painful, a hot searing stabbing pain when breathing deep, coughing and sneezing. I was able to see one of the nurse practitioners for my CF clinic yesterday. We decided that I would do a 14 day course of IV Zosyn (4.5g every 6 hours) and prednisone. I had to get this dealt with because we go to Cancun very soon, as in squeezing in 14 days of IVs which will give me a few days off of IVs before we go. I don’t want to be miserable while we’re there or have a need for medical attention while we’re there. So of course I’m doing the whole squeeze in IVs and prednisone to able to go on vacation which my sister reminded me that I did the same thing before my last trip to Playa Del Carmen, Mexico last May. CF doesn’t play by the rules and it rears its ugly head at the most inconvenient times as usual. You just have to learn to adapt the speed bumps CF throws in your path. It is what it is and I can’t change it so I choose to look at the positive side of things which is getting loaded up with antibiotics and prednisone isn’t the worst thing in the world. It’s better to do what you have to do rather than ignore it and hope it goes away because it never goes away, it usually comes back stronger the next time.
I think that about wraps up the last 6 months. Sorry for the long post but that was a lot to cover. haha. I WILL do better about updating here and not just my blog.
Until next time…