Hyphen
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
When I was born, I weighed 10 pounds, 2 ounces. I was so chunky that I got stuck on the way out and had to be born via c-section. But, damn, I was adorable. My parents didn’t know at the time that I had cystic fibrosis, but when I “failed to thrive” over the next six months, the doctors eventually came to the diagnosis. This wasn’t an immediate death sentence, but it also wasn’t expected that I would live to adulthood. CF was still considered a children’s disease as many patients died before their 18th birthday. But my parents didn’t allow the disease to take over our lives. Instead, they beli ..read more
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*Record Scratch* *Freeze Frame*
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
  Me (in voiceover): So you’re probably wondering how I got here…   Here is, of course, in a hospital bed on the sixth floor of Ginsburg tower at Florida Hospital. I’ve been here for almost an entire week, but have yet to inform most of you because I didn’t really have any information to share. But now I do, so here we go! It all started almost two weeks ago, when Joe and I were on vacation. I had been having a little cough since my last hospitalization in mid-April, but it started to get worse while I was in South Carolina. I was also getting short of breath after any sort of p ..read more
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Just a Quickie
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
For those of you who don’t know, I was admitted into the hospital on Tuesday after a CT scan suggested I had pneumonia. A few weeks ago,  I came down with a virus, but I started to feel better early last week. However, this past weekend my cough increased and I was very mucusy (as well as sexy, obviously). So now I’m at Florida Hospital on four different antibiotics and one anti-fungal medication. I will be here at least through the weekend. Hopefully my cultures grow something so we know what we are trying to fight. Unfortunately, rejection can sometimes look like an infection, so I am m ..read more
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Where I Stand
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
I’m sure many of you are tired of seeing political posts all over your social media. I’ve got bad news for you: It will be a long while before they end. I have remained pretty quiet on social media in regards to this election. However, now that the votes have been cast and I’ve had a couple of days to gather my thoughts, I’ve decided it is time I speak. Although it is far from the outcome that I wanted, I can accept that Donald Trump is the President-Elect. I have always had a respect for the office of the President. I understand the pressures, expectations, and the constant criticism that the ..read more
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Fall
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
Hello, internet people! It has officially been one year since I was admitted to Florida Hospital after my bronch-gone-bad that led to my eventual second transplant! Oh, how time flies. Fall has always been a bittersweet time for me. It is the beginning of the best time of the year; Halloween, Thanksgiving, Christmas, New Years’ Eve, and my birthday all occur within three months of each other, making this quarter of the year not only expensive and frantic, but also exciting and festive. October is also the start of sick season and I spent most of my teen years in the hospital on IV an ..read more
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What to do when you’re craving deep dish pizza
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
It’s hard to believe I am already six months post-transplant (again). It seems so long ago. It’s been almost a year since I started rejecting my old-new lungs. I look back on that time and it feels like a dream, which frankly frightens me a little. What if I forget how it felt to not breathe and I take these lungs for granted? When everything is great it is difficult to be appreciative for everything I have. Like they say, hindsight is 20/20. You only know what you have until it’s gone, and I don’t ever want to experience that terror I felt when I realized I might not have any more time left ..read more
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What is “Normal” Anyway?
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
One of the reasons I started this blog was to share my personal experiences living with cystic fibrosis and a double-lung transplant. I know it is extremely difficult for “normal” people to understand what us sick kids go through on a daily basis. I figured I could help people empathize if I wrote in a user-friendly kind of way. I’ve never been shy, but I’ve also never enjoyed the spotlight. I don’t like everyone’s eyes on me, but I also realized the importance of sharing my story, so I decided to write a blog.  I always write like I’m talking to one of my best friends, as you can probabl ..read more
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Started From the Bottom Now We Here
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
It has been a little over two weeks since my last post, which announced the transplant I received three weeks ago. As such, many of you have no idea what has been going on post-transplant. That is totally my fault because I have been putting off blogging. The first week I was incredibly busy with procedures and tests and physical therapy and, most importantly, naps. During the second week I fell into a little bit of a depression and didn’t really feel like doing anything. I don’t know why I was in such a sucky mood. Perhaps I realized how much work I had to put in now that I was breathing on m ..read more
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Spoiler Alert
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
As you all know, a week ago I was placed on the transplant list. On Wednesday, October 28, my dad woke me up at 2:30 in the morning with a sweet little kiss on the cheek. He is such a gentle creature, like a deer in a meadow or a puppy snuggled up in some comfy blankets. I was actually very startled because I was finally in a deep sleep and he had left the hospital hours ago. A little confused, I looked up at him with the signature scathing look that my family loves to call me out on. Then he told me we received an offer on lungs. I was shocked that it happened within 36 hours.Based ..read more
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The Blog That Should Have Been
With Every Breath: My Life with Cystic Fibrosis
by jmccaskill36
3y ago
I deleted Sheena’s post with my drug induced ramblings. It should have never been published. I wanted my first blog post from the hospital to be thorough and explanatory, but I was too doped up to write what I wanted, and Sheena didn’t know what I wanted so she wrote a brief explanation of the situation at the time. What was written wasn’t wrong, but my blog is my baby. It’s so personal to me and I put a lot of effort into producing a story that people want to read that it didn’t really fit into my vision of what this space should be. So now I’ll tell you my story as I envisioned it. Ther ..read more
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