So basically I'm like a Nerf gun that you can add attachments to that make it cooler and more efficient and what-not. But I'm a human. And I'm not sure if my attachments make me cooler, but I like to think they do. Years ago, in 1st grade, I got my first attachment: my feeding tube. My feeding tube helps me gain weight, because of course, CF makes it hard to gain weight just by eating. Maybe one day I'll write an entire blog about that, but for those of you new to this CF thing, yes, I can, and definitely do, eat normal food through my mouth. My feeding tube is a supplemental feeding overnight.
Anyway. I had another surgery a year later, which was an acid reflux bypass sort of thing. Not totally sure why I got it done or anything, but it's not visible from the outside, so I wouldn't call it an attachment, more like an enhancer to the gun that is myself. Recently, as in today, August 22nd, I got a new attachment that will be much more efficient and enhancing to my health. It's called a 'portacath', or port, for short. It's basically a permanent IV, more specifically a PICC line, for those of you who are familiar with the term PICC line, but really it's in its own class of IV antibiotic treatments.
I had heard about ports about a year or two ago, and was completely against it. I'm not sure if it was brought up just in casual conversation or if they were talking about me getting one eventually, but I do remember being scared and uncomfortable with the thought of it. This is what I was told initially: It's an IV thats under your skin 24/7 for the rest of my life.
Ummmm no thanks. Just the thought of having something under my skin for the rest of my life makes me feel so uncomfortable, and even now that I have it, it's still kind of a weird thought. I like to think of it like it's a tracker they use in the Hunger Games. With CF, you need to learn how to have a little fun with it. With life, you need to learn how to have fun! Anyway, all I was told was that it was more or less a forever IV and then the subject was changed. Then, a few months ago, in May, I was in the hospital and was told that my PICC line that I got in was very hard to place and that we need to start thinking about getting a port. They explained the benefits of a port and were much more specific about details and what it would entail. I was pretty annoyed that they put the PICC in my arm in the first place during this hospitalization for various reasons, one of them being it would mean I was one step closer to needing a port. Turns out I was a lot closer than I thought.
Cystic Fibrosis is funny that way.
You think it's just something small and it snowballs into something huge and unexpected.
But now I'm just rambling.
So I was discharged from the hospital with a PICC and a mindset of getting this port placed. I went into the doctors office a month later, got some more information, and eventually scheduled my consultation for the surgery. I was very excited to get the port now.
When I met my surgeon, I was even more confident and eager to get it. He told me I would have virtually no restrictions, with the exception of the first few weeks after the surgery to recover. I can play baseball, shower, anything!
I have a small bump on the right side of my abdomen now where the port is underneath my skin. It's sore, but thats temporary. Now, whenever I get sick and need to go into the hospital, I won't need to get any sort of IV or PICC line; they'll just "access" the port (pretty much just stick a needle into the site and hook up the medicine) and my hospital stays could potentially drop in duration because I'll be able to get antibiotics right away and won't need to wait for the 'go ahead' for a PICC line or anything.
I had heard about ports about a year or two ago, and was completely against it. I'm not sure if it was brought up just in casual conversation or if they were talking about me getting one eventually, but I do remember being scared and uncomfortable with the thought of it. This is what I was told initially: It's an IV thats under your skin 24/7 for the rest of my life.
Ummmm no thanks. Just the thought of having something under my skin for the rest of my life makes me feel so uncomfortable, and even now that I have it, it's still kind of a weird thought. I like to think of it like it's a tracker they use in the Hunger Games. With CF, you need to learn how to have a little fun with it. With life, you need to learn how to have fun! Anyway, all I was told was that it was more or less a forever IV and then the subject was changed. Then, a few months ago, in May, I was in the hospital and was told that my PICC line that I got in was very hard to place and that we need to start thinking about getting a port. They explained the benefits of a port and were much more specific about details and what it would entail. I was pretty annoyed that they put the PICC in my arm in the first place during this hospitalization for various reasons, one of them being it would mean I was one step closer to needing a port. Turns out I was a lot closer than I thought.
Cystic Fibrosis is funny that way.
You think it's just something small and it snowballs into something huge and unexpected.
But now I'm just rambling.
So I was discharged from the hospital with a PICC and a mindset of getting this port placed. I went into the doctors office a month later, got some more information, and eventually scheduled my consultation for the surgery. I was very excited to get the port now.
When I met my surgeon, I was even more confident and eager to get it. He told me I would have virtually no restrictions, with the exception of the first few weeks after the surgery to recover. I can play baseball, shower, anything!
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| My Port. Gotta keep it bandaged up for a few days |
I'll probably need to use my port at home after hospital stays, just like I did with PICC lines. When I do need to use it, I will not be able to be active, again, just like with the PICCs. I'm not sure what it will be like, if I'll have some sort of tube hooked up to it or what, because personally, I don't see why I can't be active if I'm not hooked up directly to it, but I guess I'll find out.
Every month I will need a home nurse to come and flush my port, just to prevent any clogging or infection. It sounds like they'll just come to my house, stick a syringe in it, flush it, and leave. No big procedure, I can be active that day and the following days, no big deal. Just a precaution.
It hurts to do treatments with it right now. It's pretty much always sore and the pressure from the treatment doesn't help, but I have a foam donut thing that I use, similar to one I used when I got my feeding tube placed. It shouldn't last long but I do need to take frequent breaks during my treatment just to let it rest.
So yeah, this new attachment to my gun is a pretty good one. Hopefully it'll help in the war against CF. It'll be much more efficient and it will help me rebound from sickness faster and I'll be on my way. I was hesitant at first, but now that it's in me, there's not much I can do, so I guess I'll give it a shot and see what happens.
Every month I will need a home nurse to come and flush my port, just to prevent any clogging or infection. It sounds like they'll just come to my house, stick a syringe in it, flush it, and leave. No big procedure, I can be active that day and the following days, no big deal. Just a precaution.
It hurts to do treatments with it right now. It's pretty much always sore and the pressure from the treatment doesn't help, but I have a foam donut thing that I use, similar to one I used when I got my feeding tube placed. It shouldn't last long but I do need to take frequent breaks during my treatment just to let it rest.
So yeah, this new attachment to my gun is a pretty good one. Hopefully it'll help in the war against CF. It'll be much more efficient and it will help me rebound from sickness faster and I'll be on my way. I was hesitant at first, but now that it's in me, there's not much I can do, so I guess I'll give it a shot and see what happens.
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| Just a little Pre-Op selfie |
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