Earlier this evening, I had a conversation with a friend who will be getting her first mediport placed tomorrow. I realized while talking to her, that just over a year ago, I was in her exact position. (I know, because about four days ago, TimeHop reminded me of that Instagram post.....) I wrote a blog about my decision to get a mediport placed. It was not an easy decision for me. I was angry, sad and more than anything.... absolutely terrified. Thinking back to the feelings I had before my port and my perspective now, I had a reality check about how much change can happen in a year's time.
DISCLAIMER: After 23 years, I don't even flinch at "medical" stuff anymore, but out of respect to those that do find the topic less than desireable, I will say now this post contains mildly graphic images.
If you'd like to take the long jog down memory lane, you can read my original blog post here (http://www.jillian-goodwin.com/2014/10/sometimes-hardest-thing-and-right-thing.html#more). But for those that would prefer the quick 'n easy version, carry on...
April 1998, I got my first PICC line placed, otherwise known as a peripherally inserted central catheter, or a really long, semi-permanent IV line. PICCs in your upper arm and runs all the way to your heart. While they can stay in place for several months, mine were usually 2-4 weeks depending on how long I needed to be on IVs. Patients are not allowed to leave the hospital with "regular" IV lines, and most only last a few days regardless, so PICCs, which allow for longer, at home therapy, are the next step up.
Unfortunately, some of the placements took multiple tries because if there any body organ I have that sucks more than my lungs, it's my veins. This particular attempt (March 2011) took 7 times. Keeping in mind, a "try" to get a picc line is not just a needle; it's a lidocaine shot, a inducer needle, a guide wire and a catheter (all without anesthesia because I was "a big kid"). Some tries fail with the inducer, some with the guide wire, some with the catheter, so these bruises are from about 15 different needles/objects piercing my skin... #ouch
Furthermore, for a while during high school, I didn't have any PICCs placed because I had a more permanent broviac central line. A central line is the next step up from a PICC. It is larger and goes directly into the chest wall, and can be in placed for several years if well managed. I needed this over a PICC because a particularly nasty infection I got in the 10th grade required me to take IV antibiotics 3x a day, every day, for almost four years. I needed something more durable than a PICC, so I had a central line placed. It was visible with the majority of clothes I wore, but I got use to it after a while.
Fast forward to August 2014, I'm in the hospital for a tune up, ready for another PICC. After a traumatizing, two hours on the operating table.. fully conscious.. both arms spread out and unable to move.. (I believe I used the word "crucified" when explaining it last year) my doctors and I came to the conclusion that PICC lines were not a thing anymore. After years of wear and tear, the veins running from my arms to my chest were 100% blocked with scar tissue. On the right side, my body had actually formed dozens of little tiny veins in a web AROUND the primary vein to allow blood flow. My doctors told me they hadn't seen anything like that before and were genuinely surprised that my right arm wasn't a giant swollen sausage. Okay, they didn't really say sausage but you get the idea. Just goes to show you how truly remarking and adapting the human body actually is.
Moving right along... no more PICC lines means it was time for me to get a mediport. Again, I was NOT okay with this AT ALL. After having a central line for four years, then being "free" for a few years, getting a piece of plastic and/or metal put back into my boobs was the absolute last thing I wanted. I had heard horror stories about ports... how painful it was, what happens when something goes wrong, the idea of using a needle to access it every time, etc etc etc... I had also seen several of my friends with ports and for those that were petite like me, I felt like it was very obvious. It looked like someone took a giant gumball and stuck it inside you, just under your collar bone. I'm a girl, I wear pretty clothes and I like looking cute... I did not want such a visible indication that I was "sick." One of my biggest pet peeves is people knowing about my illness before they know me, and nothing starts the awkward "I have a chronic illness" conversation better than a mediport/IV line sitting in plain view for strangers to stare at....
I was also sad because getting a port meant my illness was progressing. I felt like it was a turning point in my health, and not for the good. It was a big reality check that I had a chronic, progressive illness that was only going to get worse. Again, more details in my original post but the bottom line is while I knew it was going to be helpful, getting a port was not a happy decision for me. Well, here I am, one year later. And guess what? Getting a port wasn't the end-all I expected it to be.
To be perfectly honest, getting a port was one of the best decisions I ever made.
Maybe I just lucked out on this one, but getting a port was nowhere close to the negative experience I thought it would be. For starters, I remember the entire procedure. I had valium and local anesthetic at the incision site, but otherwise I was awake and had zero pain or discomfort (Thanks Lidocaine!). The recovery wasn't awful, but it was definitely manageable. More uncomfortable than actually painful. And more than anything... my surgeon did an absolutely phenomenal job of placing my port. There's no bump and the scar is completely covered by clothing.
This was the day after, accessed by the surgery team, who uses larger port needles. And that's a low cut tank top. In the majority of my clothing, you can't even see it while accessed.
This was the day after, accessed by the surgery team, who uses larger port needles. And that's a low cut tank top. In the majority of my clothing, you can't even see it while accessed.
And when it's not accessed? Not a thing. As you can see from the following photos taken in Hawaii over Christmas break and at my beautiful best friend's wedding in February.
Going back and reading my old blog, I realized how much my perspective changed over the past year. I wanted to write a follow up, partly to reminisce (and have an excuse to post half a dozen photos...), and partly, because maybe my story and experiences will help someone else. Getting a port is, unfortunately, a necessary and eventual part of nearly all Cystic Fibrosis patients' care. Some people luck out and have veins as thick as crayons (cough, Gunnar, cough...). But for the rest of us, our 100lb bodies and limp spaghetti noodles give out and it's time to move on to bigger and better things. It's scary, yes. And I can't promise that everyone will have as blissful (did I really just refer to getting a chunk of metal put into my boob as blissful?) experience as I did. But I can say, with confidence, that our fear is our own worst enemy. This decision I feared so much turned out to be an empowering choice that changed my life for the better.
I ended the conversation with my friend earlier with two things, 1) be optimistic and 2) find what works for you. If PICC lines work, for the love of that is good, do PICC lines. Don't jump the gun. Use the resources you have until they don't work anymore. And when they don't, find something else that works. See what your options are. Talk to the medical experts. Part of why I am so happy with my port is because I was honest with my surgeon before we even started about where I wanted it placed and what my concerns were. Getting a port is a big decision, but it doesn't have to be a bad one.
Moral of this story is.... Getting my port was definitely a good decision. It has made my life infinitely easier. When I need IV therapy, all I have to do is call my doctors, get evaluated and get my meds. No scheduling a PICC placement, no more damage to my veins, no more hiding it under long sleeves or cloth covers.
Going back and reading my old blog, I realized how much my perspective changed over the past year. I wanted to write a follow up, partly to reminisce (and have an excuse to post half a dozen photos...), and partly, because maybe my story and experiences will help someone else. Getting a port is, unfortunately, a necessary and eventual part of nearly all Cystic Fibrosis patients' care. Some people luck out and have veins as thick as crayons (cough, Gunnar, cough...). But for the rest of us, our 100lb bodies and limp spaghetti noodles give out and it's time to move on to bigger and better things. It's scary, yes. And I can't promise that everyone will have as blissful (did I really just refer to getting a chunk of metal put into my boob as blissful?) experience as I did. But I can say, with confidence, that our fear is our own worst enemy. This decision I feared so much turned out to be an empowering choice that changed my life for the better.I ended the conversation with my friend earlier with two things, 1) be optimistic and 2) find what works for you. If PICC lines work, for the love of that is good, do PICC lines. Don't jump the gun. Use the resources you have until they don't work anymore. And when they don't, find something else that works. See what your options are. Talk to the medical experts. Part of why I am so happy with my port is because I was honest with my surgeon before we even started about where I wanted it placed and what my concerns were. Getting a port is a big decision, but it doesn't have to be a bad one.
Hey Jill, this has honestly been my exact thought process about these decisions. I have a PICC right now, and I don't know what number I am on but I know it is nearing my last PICC. I have all the same feelings, questions, and thoughts you expressed here, and have gained a bit of comfort from reading your blog on this issue..... So thanks!
ReplyDeleteHey Jackson! I'm so glad my story could help, that was my whole intention! Feel free to reach out personally if you have other questions or concerns, I'm happy to chat :)
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