Day 6

Really no change from yesterday, or the day before, etc. Just tired. Exhausted. I am able to get out and get things done, but I immediately need to get home and lay down. Since today is Thursday, its infectious disease day. I waited until my vancomycin was finished this morning, which was done about 8:15am, I got the gloves on, and pulled the port needle out of my chest. I noticed a lot of dried blood where the needle was inserted. Problem being, is we sort of figured out the needle I had, which is a 20 gauge / 1″ needle, the needle is just too long. It will work, but, its just not the right size.

God it felt so good removing the needle. It’s quite awkward having my port accessed 24/7. Moving my right arm sorta moves my right breast, where the port was placed. Sort of up near the top of my shoulder. If I move my right arm enough, you can definitely feel the tension on the needle. I took the longest shower of my life. Just stood in the hot shower for at least 15 minutes. It’s the first real shower I’ve been able to take since the heart attack. Yeah, you can use aqua guards, but the problem with those is, they don’t do a good job staying put. They don’t stick well. So you gotta be careful when in the shower to not bump them, or let water hit it directly.

For those that don’t know, a portocath, or port, is placed under the skin in a semi-temporary, to temporary fashion. There is a access point right under the skin. This access point has a “bubble” that you place a port needle through. Once the needle pierces your skin, and through the barrier of the port, the backside of the port is pure titanium, think of the port itself as a big bowl, with a super tough plastic barrier you have to push through. Then the port is connected to a catheter, where it is placed right before your hearts entrance, known as the supena cava. This is the “flow” side of your heart.

Each time you place a port needle, you need to clean the skin above the port, typically with chloraprep. This ensures you don’t push bacteria straight into your heart. That would sort of be problematic, so you just gotta make sure the whole area remains clean. When the needle is placed into the port, it sort of feels like it “pops” into place. Once the needle is verified in the port, you use a medicated antibiotic disk that sits in-between the port needle end and your skin, so that the area of where the needle is inserted into the port is pretty much “protected” in a way. Once that is placed, then you secure the needle to the port by placing an IV dressing over the top. That way everything under the dressing is considered “clean”.

The main problem with this, is these dressing’s do not react kindly to water. The adhesive does a really good job keeping things in place, sweating for the most part wont impact it’s hold, but if the adhesive gets wet enough, well, it’s not so adhesive anymore. So thats why its frowned upon working out when you have your port accessed. Just like when i had the PICC lines in my arm. I don’t know who in their right fucking mind would want to exercise during this, definitely not me. So with showering, you use aqua guards to sit over the top of the port dressing. The goal is to keep the water off of the dressing period. So like I was saying before, showers aren’t real showers. You can’t have really hot water going, because from experience, that will sort of superheat the adhesive, and then its a real bitch to get off. I made this mistake the first time I had a PICC line.

When the nurse was trying to pull the dressing off, the dressing literally became one with my skin. It took her an hour to remove the dressing. With that, it was extremely painful during the whole time we were trying to work to get it off. It was just a mess. So with this “lesson learned” moment, I knew to never take a hot shower ever again with a PICC line. The same dressing thats used with PICC lines, is used with the port. I’d show you what this all looks like, but I think I can spare you the weird picture for once.

I did get to infectious disease today, got my port needle swapped. Unfortunately, the infusion company that is in-office at infectious disease has been having some personnel issues. Different nurse every week. Over the summer, I had the same nurse when I had the PICC line through the whole ordeal, but then she was promoted. Soon after my port was placed, another nurse was flown out to “setup” the new people. Stephanie was one of the nurses that was pretty cool. Understanding. She just got it. Unfortunately, for whatever reason, she moved on. So since then, it’s been a different nurse every week.

As I sat down in the chair to get ready, I met the new nurse. She seemed cool. Which honestly, is really really important when you are doing infusions. It’s a trust thing. So whenever there is a new nurse / provider, I’m a bit leary of getting stuff done. The nice part was, aside from the other nurses, she sorta had her shit together. She had everything already laid out on the table before I got in the room, which is a good sign of a nurse that knows what they are doing.

After I got out of the shower, to make inserting the needle easier, I’ll put a dab of lidocane creme on the site above the port, then place a small tegaderm over it. That way the area stays numb, and I don’t get it everywhere. She began cleaning the area getting it ready for the port needle, I did make sure that they got the shorter needles this time. Same gauge (20ga), but shorter needle (3/4″). Hopefully this will be more comfortable since I’ll be using it 24/7 for the next 6 weeks. As she was ready to push the needle in, I noticed she grabbed the needle wrong. Huber needles have a safety mechanism in it where if you pinch in the right spot, the needle will retract to the safety position, and thats it. You can’t use it again. So as she pushed the needle in, I heard the huber pop, and I didn’t feel it “go in” all the way. When you have a port, you know if it’s in, you feel the needle hit the back of the titanium bowl, it doesn’t hurt, but it’s just a feeling you have.

So she sort of looked at me in panic. I gently told her hey, shit happens, but I’ll teach you how to never do that again. She was really perplexed I said that, thats when I told her I used to be a nurse. She was super humbled that I wasn’t your typical patient. Most patients would have freaked out. I just simply told her to go snag another Huber, and I’ll show her the neat trick so you never do that. Unfortunately, we had to start over with cleaning the area, sterile gloves, but when she picked up the needle, I showed her to grip the Huber along the outside rim, which you’ll never hit the safety mechanism. Just a small quality of life thing, but she was super happy I showed her that.

When we had the new Huber needle in, she then sort of got gunshy. So I told her first thing, is pull back on the saline flush thats already attached to the needle. The hope is to see blood return, which of fucking course, we didn’t. She then got more nervous thinking that the needle wasn’t in. I assured her it was, I told her I felt it go in. So I then showed her how to “test” the needle without causing too much pain. Saline under the skin, or in the wrong spot fucking burns, and hurts. It’s like someone pinched you. So I slowly advanced the saline 1cc every 10 seconds, telling her that if it was out, I would be immediately feeling this in my shoulder, which it wasn’t. The shitty thing that I am starting to notice though, with the PICC lines, and now my port, that they go one way. There’s clots forming on the tips of the catheters. The port isn’t coming out ever, so I’ve got that going, but that really does concern me this is a recurring problem.

Hopefully when I see Dr. Chauhan I can get setup with a different hematologist, since the other one didn’t do a good job of following me last time when I had the clots. I did have extensive workups at Mayo when I was there in 2021, and they didn’t find any evidence of a clotting disorder, but with the catheters constantly getting plugged, that just tells me there is one. I’ll just have to stay on the Lovenox for the rest of my life, or if we can find an anti-coagulant thats just as effective. Previously, I did clot on Xarelto, so thats not a good sign, and the main reason I asked to just stay on Lovenox, since it is heparin, without the need for labs. Fuck warfarin.

I was able to unclog the port, with a few heparin lock flushes, and a bunch of coughing, it finally drew back. I was able to get the labs done, sign for my antibiotics and wait for the PA to talk to me. I waited around 15 minutes, and I met with Rebecca going over everything. Told her that we need to remain focused on the active infection. I reminded her that I am immunocompromised, and that they need to treat me with high priority going forward. When I ask for something, I need a quick response. She seemed to understand that, so I didn’t dwell on it much with her. She had to give me a lab tube, and a lab draw kit so I could pull my blood at home an hour prior to my next Vancomycin dose, so that they can look at my trough levels. I’ll get the remaining Vancomycin next week. Which is just a funny way of doing this, but whatever, I’m getting Vancomycin until January 11th.

I got home, dropped off everything, then it was pretty much time to draw labs, got that done, headed off to Labcorp to drop it off. Came back home and just crashed. Again, this whole exhaustion thing hits me fast. I just gotta lay down. I have to constantly remind myself that this isn’t a race.

That’s it for this weeks Dr. visits. So at least I’ll get a break from needing to go places, I’d rather just be relaxing.