Getting A PICC Line

  I thought it might be helpful to share my experience with getting a PICC line in case anyone has to do that in the future.

For some reason, I wasn't nervous at all. I really didn't know anything about it and didn't do any research on it either. Which for me is very surprising lol. I'm glad I didn't though. I think. 

I can't remember what the appointments leading up to this were like, but I'm pretty sure I was just so sick of being sick and didn't care what happened to me anymore. I remember having two choices, though, which were penicillin shots (I did those, too) or the PICC line. I think getting the PICC line just sounded like the better option to give me a better chance of finally getting rid of this crap. So obviously I went with the PICC line. 

Anyway, the day finally came, and we went to the hospital. One very far away but what's new? We get there, check in and everything, then I'm just waiting in my room. It was like a pre-op area, but not. This wasn't an operation but I did need to go into a different room for it to be done. I was sitting there and had absolutely no idea what was about to happen. The nurse comes in and tells my mom and me that it'll take about 10-15 minutes then I'll be all set. They then roll me away while continuing to ask me if I'm okay and if I'm really not nervous. I was seriously fine but they were so kind just making sure I was okay. 

The room I was in might've just been an x-ray room but if it wasn't, that's what it felt like. I had to get up on a table while a giant piece of equipment was placed very close to my chest. If you're claustrophobic, this probably won't be a fun experience. Luckily, I am not. So I was fine. I don't know if you've ever had chest x-rays, but this is what this whole experience felt like. Just a very long x-ray with a lot of people around. That was honestly the strangest part. I mean so many people. I didn't count, but there were two working on me, at least four looking at me, and probably four or five others doing whatever. Just a little awkward lol.

I laid on that table and had a nurse by my head talking me through it and making sure I was fine the whole time and was just one of the kindest people I've ever met. While checking in with me frequently, she was also working with the other nurse who was inserting the PICC line. 

The actual insertion didn't hurt at all. I couldn't feel anything. They put stuff on to numb the area, and I didn't feel a thing. Once I found the giant screen that showed where it was as they were putting it in I started to feel a little anxious just because it's a little weird to see your insides with a small tube being pushed through your vein but I got over it. I would just recommend not looking at it. 

The whole process was quick and easy. I even had bracelets, earrings, and a watch on and didn't need to take any of it off. 

They rolled me back to the first area and set up the first round of rocephin. Again, I was perfectly fine. I do remember leaving and being a little confused about what I was supposed to do now. I was a little foggy and didn't know I had a nurse coming the next day but it was just a weird feeling to have this IV in my arm not knowing what to do. 

I went home and was fine. It did start to hurt, though. The whole first day and probably five days after, I couldn't move my arm at all. I had to hold it up with my other arm just because it was so sore. It also hurt too. Like a pinching feeling right where it went in. That's not exactly normal, but it did go away after a while.

My nurse came the next day. This was all just very strange to me and I was having a bit of imposter syndrome to be completely honest. I know this is not the kind of situation that someone would be having imposter syndrome but I was. I am also well aware that by saying that, all the people who have accused me of faking it or being dramatic are thinking "Oh so you were then?". And that's not what I mean at all. What I mean is that it finally hit me how sick I was and I had all of these thoughts in the back of my mind from all the times I've been told I'm being dramatic or making things up to get out of doing what I was supposed to be doing. I mean when you are told something enough times you kinda start to believe it, right? So this was just a very interesting moment where I was like, wow, I really am this sick. I mean, I have a tube in my chest and a nurse coming to my house every week. But part of me was still thinking, "How is this my life? This doesn't seem right at all." I don't know what I'm saying. It was just a very confusing moment. 

So my nurse came over and was so nice and amazing and talked me through everything. I had a tiny moment of panic when she said that she was going to teach me how to do it myself. I seriously mean it when I say that I had put zero thought into any of this. I didn't think about the fact that I would be doing it all myself. But it was fine. So simple. Truly. No need to worry at all. 

She started to lay everything out, wrote some reminders for me on the paper and took out the medication. With rocephin, it's better to have it sit out for some time (not sure how long so don't take anything from me) so we sat there for a little while while she showed me everything else. It finally came time to do the medication, and I wasn't nervous at all because I had just done it the day before and was fine. Hahahaha how wrong I was. She pushed the smallest amount of this syringe and I swear I felt that cold medication go from my arm and through my entire body. In the worst way possible. I mean I felt this rush of uneasiness go through my body so fast and I immediately ran to the bathroom. When I say I ran, I mean I looked around worried and confused and slowly walked to the bathroom when my mom asked me if I was okay and the nurse asked if I needed to throw up. I did. It was horrible. I really didn't throw anything up though, I just maybe threw up the medication, I don't know. 

So we sat there for a little longer while I ate some food. The thing is, I did eat before. I didn't do any of this on an empty stomach. The trick she taught me and what is probably the most important thing to take away from this is to have some kind of candy or mint or something in your mouth while doing this. I switched between lollipops and those root beer candies and it really did make the biggest difference. I don't know how or why, but it does and I would highly recommend it. We eventually got through the rest of the syringe while I basically stuffed my face with rice cakes the whole time to keep myself from throwing up. I mean it worked haha. I also had to do two bags of hydration each week so she set that up and showed me how to do that. It was all great. By the time she left, I felt much more relaxed about everything. 

The first few days were fine. The shower situation was a little annoying just because you can't get it wet. I did get a waterproof cover from Amazon that made things a lot easier but also felt like it was cutting off my circulation which at least forced me to take shorter showers which is probably a plus. That was really the only frustrating part of it all. I also really like to work out and was hoping to get back to playing sports (this was supposed to be a month-long thing and I was hoping to go back to school) but that was immediately shut down. Again, zero research. That was sad but I still had hope that I'd be able to get back to it all soon. Spoiler alert: I never did. It's fine. 

After a few days, I started to get a really bad rash. This scared me, but it ended up just being from the dressing. We tried a few different dressings, and I'm not sure when, but we found something that worked. 

Things were going well until my nurse sadly broke her leg and couldn't come until that all healed. So other nurses had to cover which was fine and they were all great but the only problem was that I do not do well with change. You see, I didn't know this at the time. I really didn't. This was years before PANS was even thought of, and I definitely did not think that I had any kind of OCD. But I did. And I did not do well with any of this. I do feel really bad when I look back because these other nurses were all amazing and kind, and I was simply not able to appreciate that at the time. Now before anyone makes any assumptions just know that I wasn't mean or rude or anything, this was all internal. One thing I am grateful for is the fact that I hate confrontation and will keep everything to myself because I would never say anything out loud and looking back, there was nothing to say. I was just really quiet and didn't interact much. And it wasn't the fact that these were different people, it was the fact that they were all doing it differently. I really didn't care but they would bring it up to tell me that the last person did it wrong and I didn't know what to do with that information. I don't know. All of these thoughts stayed in my head but I just did not look forward to it each week. Also, one of the nurses was just trying to talk and have conversations and kinda told me that I didn't look sick at all and I just did not need to hear that at the moment. Idk. She was so kind and funny though and a great person. She was just trying to make conversation and it just didn't feel great to hear about her other patients being much sicker than me when in reality I was sicker than she realized. 

I was doing the IV rocephin for a while and also taking oral antibiotics. We had added in another IV medication too (not sure what it was) and I had to do that twice a day as well. It was all fine. It sucked and I cried myself to sleep every night watching all my friends living their best life during their first year of college. From moving in, making new friends, exploring new cities, and partying all night every night, it just sucked to see as I sat in bed pumping myself full of drugs. Prescription drugs. I had amazing friends who would still text me and we'd Facetime every once in a while but I just became so depressed and also didn't want to ruin the best times of their lives with my misery. It was just a rough time, but I still had hope. That is one thing I do remember, having legitimate hope. Stupid looking back but glad I had it then. 

I even went to Florida once which required going on a plane which was interesting with having to bring a cooler full of meds but it all worked out. I was nervous about going through TSA and all of that but we called ahead just to make sure and it was fine. 

**I'm reading this back and realizing that I have missed so many chapters so I am going to do a whole different blog on how it all went for me and different challenges and reactions I had. My point when starting this was to explain what it was like having a PICC line put in and it all went in a different direction but that's okay. **

One thing I will say and now that I'm thinking about it, this might've been one of the reasons I chose the picc line over the shots, is the fact that I didn't need to get poked every week. They could take my blood right from the IV. Amazing. Except it's me we're talking about. Of course things can't always go how they are supposed to. Ugh. There was one week where literally no blood would come out. How is that even possible? I don't even know. I was told I was probably dehydrated but I was drinking so much water and doing multiple bags of saline so I don't know. So frustrating though. And we had to get my blood. It wasn't a choice. So when she couldn't get it out of the IV, she went to my other arm and poked about 18 million times. I had a full meltdown panic moment in my head when she went to the hand. I know that's pretty normal, but not for me. I have never had that happen, and I did not want it to happen.

To get back to the point I was originally making in all of this, getting a PICC line wasn't scary at all. It might seem a little crazy to have an IV in your arm, but it was fine. There were so many challenges and things that happened that I'll get into at another time, but those were really all just me things. Not things that anyone should worry about. I will say to make sure you are on the right amount of probiotics and like quadruple check with your doctor because one of my many challenges was c diff which will be a whole other topic and while I was taking probiotics, it wasn't nearly enough. So just check that, please. Other than that it was just a strange feeling at first but it eventually became normal.

Let me know if you have any questions or want me to talk about something more specifically. Hope this helps.