A Day in the Life- Coronavirus
Inhaling Hope
by
4y ago
I have done a few "Day in the Life" posts over the years and I figured that this crazy time in life might be a good time to do another one. 7:30 I am the first one out of bed in the mornings. Sometimes Kaylee is awake in bed reading, but she likes lazy mornings so she usually lounges in until late. Thanks to Trikafta(!!!) I don't need to beeline to my nebulizer. Instead I go to the kitchen and brew some coffee. I then sit in the garden and catch up on the news. I have never been much of a news person, but there is so much going on in life right now I spend a few minutes each mornings scrollin ..read more
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8 Years Old
Inhaling Hope
by
4y ago
Dear Kaylee, You are 8 years old today. 8 short years and yet it feels like a lifetime. How could it be that just a little over 8 years ago I talked to you in my belly and you were still a complete mystery to me? Just 8 short years ago I had no idea who you were, the shade of blue yours eyes would be, the sound your laugh would have, the feel of your silken hair. It feels at times I have known you all my life. What was life like before you arrived? I hardly remember it at all. Watching you grow into this "big" kid has been such an amazing experience. So what are you like now that you are 8 y ..read more
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2 Months of Isolation
Inhaling Hope
by
4y ago
We have been social distancing for a full 2 months now. It is amazing to think how much our lives and the world has changed in 2 months time.  Back in March I went out for a ladies night a few nights before everyone started thinking about avoiding crowds. It was so nice to be out with friend's from Kaylee's school. But I couldn't brush off this nagging feeling that maybe I shouldn't be out in public. The virus seemed to be looming. I had no idea that 2 days later Kaylee's school would have a confirmed case of coronavirus and our whole world was about to shrink very quickly. Kaylee's last ..read more
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New Normal Post Trikafta
Inhaling Hope
by
4y ago
I have been wanting to write about my post Trikafta life, but I am finding the words so hard to find. It is so hard to describe how much my life has changed in so many subtle and hugely obvious ways over the past 5 months. I am going to highlight the biggest changes I have felt. PRE: Treatments used to be such an exhausting all consuming part of my day. I needed to be ALONE because I would cough so hard and so violently that it took all of my focus and energy. I would get red in the face, break a sweat, gasp for air, and cough up so much mucus I needed a cup to catch it all. If it was so to ..read more
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Everything Feels Backwards
Inhaling Hope
by
4y ago
I haven't written in a while. For so long CF was taking over every aspect of my life. I didn't want to dedicate more time to CF and talk about it in my blog. A year ago I just finished transplant testing and CF seemed to be at the front of everything. I wanted to push CF to the back of my mind and ignore it's existence. Of course, my failing health wouldn't let me and so I took a break from blogging to get a mental break from thinking too deeply about what was happening in my life. In November, Trikafta entered my life. Suddenly, I had energy, I had health, I had hope. I was busy living life ..read more
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The Initial Trikafta Changes
Inhaling Hope
by
4y ago
I haven't been blogging in a while and after my transplant evaluation I felt like I needed a break. CF felt like it was taking over my whole life and I just wanted to step away from writing about it in my blog for a little. It has been almost 9 months since my evaluation and my lung function and my quality of life was remaining the same. I was getting sick more often and IVs were still not overly effective, but I didn't have a significant drop or anything that affected my transplant status. I was driving to Stanford every 2-3 months to be monitored, but I was still too healthy to list. But th ..read more
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Trikafta
Inhaling Hope
by
4y ago
The FDA approved Vertex's triple!!! I realize I have been mia recently, but I am still alive and well ..read more
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Transplant Evaluation Day 4
Inhaling Hope
by
5y ago
I have been putting this entry off for a while. Partly because I have been busier with the nicer weather, but also because I just wanted to move on. When I first got back from my evaluation I was wanting to process what I had gone through (we actually went on a little getaway right after which was why my blog posts were delayed). I wrote the 2 entries right away, but then I felt my feelings switch and I just wanted to tuck it away in a quiet spot in my mind and move on. But I know how much I wanted to hear about the evaluation process when I was waiting and so here I am writing about my final ..read more
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Transplant Evaluation Day 3
Inhaling Hope
by
5y ago
To start with Day 1 go here. I woke up Wednesday and turned to my husband and said, "I am over it. It was fun, but now I want to go home." I had a lot of adrenalin the first day and some of that carried into Tuesday, but by Wednesday it had warn off and I was ready to go home. But we were half way done and had no choice, but to continue on! So I put on my big girl panties and went to my first test. Echocardiogram with Bubble Study: I checked into the echo lab around 8:45. I went back into the medical room where they had me change into a gown with the opening in the front (opposite of the nor ..read more
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Transplant Evaluation Day 2
Inhaling Hope
by
5y ago
**Start here for Day 1** Tuesday was much shorter (which means a much shorter blog post too...whew! I had to start the day fasting again. I know it sound silly to complain, but I know I was at a calorie deficit from the day before so I woke up really really hungry! 10:00 Esophagram: I checked in for my esophogram at 10:00. They had me change into a gown and explained the test. Then I waited for a really long time. I guess they were finishing up with another patient and it was taking longer than expected. Finally, the doctor came in to get started. I was given a cup of barium with a straw. I ..read more
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