A major part of my home treatment plan for Lyme Disease is weekly IV infusions. I’ve been doing these since I got home from Paracelsus in early 2018, but after a few months my veins started collapsing. Every time. At this point we had discussed alternatives; a PICC line, central line or port-a-cath. We decided on the later and they sent a referral to have a surgery to insert a port-a-cath, and I tried to be patient as we waited to hear.

When I had IV antibiotics in 2016-2017 my doctor at the time referred me to have a central line put in. A central line is like a port in the sense that both are in your chest, and a PICC line is different because it is in your arm. All of these have catheters that lead to main arteries close to the heart, and they allow IV medications to be easily administered rather than having a needle inserted into your hand like most people would during short-term hospital stays.  

Why did we choose a port instead of the other options? 

For freedom.

When I had a central line, I couldn’t get my chest wet, which meant not being able to take normal showers, wash my hair standing up and no swimming. I always had to be careful with the central line not to get the catheter caught on my shirts when I changed my clothing. The “tail” end of the central line will always stick out of your chest. With a port-a-cath you can “disconnect” when you’re not using it.

How do you disconnect from a port? 

You remove the needle.  The port is implanted under my skin, and when I need to administer my meds, we use a special needle called a “gripper needle”, it is bigger in diameter and ¾ of an inch long, and that whole thing goes into my skin. The needle gets poked through the skin and into the chamber of the port, then secured with a dressing. It can stay in for up to seven days before you need to change the needle, or you can poke yourself and access the port each time you use it. When you’ve “disconnected” from the port, you are free; you can swim and shower and do any normal activities. 

Having Surgery to Place the Port  

Surgery was scheduled for December 7th. My nerves weren’t as bad as they might have been, having done something similar with the central line I understood more this time around. I was also coming from the stand-point of doing whatever it takes to get my IV medications into me. These meds make a huge difference and not getting them meant I wasn’t progressing or feeling well. 

On the day of the surgery we arrived at the hospital and it reminded me why living in a small town is great, the nursing staff remembered me coming in to have my central line removed a year prior and I got some “welcome back!” encouragement which was nice… I’ve always left our local hospital so happy with the nursing staff I’ve encountered that I can’t miss giving a small shout-out to them. It wouldn’t be fair to leave the doctors out either.  While I was in pre-op, the anesthesiologist came to do his assessment and we chatted about the different books we’d been reading. I had a copy of one of the Mortal Instruments books laying beside me and I’m slightly embarrassed to admit that I’m older than its intended “YA” audience—it’s a great book series.  

Once the OR was ready, they wheeled me in and everyone got set up for surgery. It moved quick, and I was asleep before I knew it. When I woke up after surgery in the recovery room my chest hurt, still confused I asked the nurse 

“Did they do the surgery yet? My chest hurts.” 

She told me I was out of surgery, gave me some Tylenol and then said there were some complications and that the line was “too deep” but they fixed it. I wasn’t entirely sure what that meant but I closed my eyes again and slept off the anesthetic.

After the Port Surgery  

A few people told me they were in a lot of pain after having a port put in. Comparing it to having a central line put in, I didn’t find this much different. I took Tylenol every few hours for about a day after surgery and that was it. A cold compress helps too.

If you want to read more about my central line, you can check out this post from the second month of having the central line – and this other post about my decision to remove it (and the issues we ran into trying to remove it).

Using My Port for the First Time

My nerves were the most frazzled for accessing the port, not the surgery itself. I knew the needle would be big and likely hurt to put in. At this point I’ll share a detailed video of how a port is accessed so that this all makes more sense. 

It all looks so simple in this video, but my reality turned out to be different. My home care nurse came one week after surgery to access the port. We were only semisuccessful, and my stomach was in a knot for hours from me being so nervous during the whole ordeal. 

The gripper needle burns like a mother F’er going in. Sorry for the “language” but it’s warranted. Often people will use Emla cream to numb their skin before accessing their port. My bandages were still on when my nurse came, so after we took them off there was no time to wait for the Emla cream to do its job. I was going at it cold turkey.

In a perfect world once the needle goes in you should be able to get blood return (blood should come back into the tube) quickly and easily. We got none. I silently panicked that something went wrong, especially after being told it was originally “too deep”. My head went to the worst-case scenario.  I was so overwhelmed I already thought about what I would do if this port didn’t work. Would I go through surgery again? Would I throw in the towel? Did I want this thing out of my body? 

At this point I wanted to get angry or cry, and just stop. Stop everything. Stop seeing doctors, stop taking medication. I just wanted to stop. 

My nurse said some ports can be finicky, so in those cases if you move the needle out a tiny bit and then try again, or rotate it it’ll work. We tried that. Still no luck. 

They delivered only two gripper needles to the house, so we tried again and stabbed it in. Still no blood return. My nurse was teaching Stephen at the same time, so she had him pull it out a little so he would get used to it… but the chamber under my skin that the needle goes into is very thick plastic, so it’s tough to pierce into it and to move it out. He accidentally pulled the needle out.  

During the attempt with the second needle my nurse sympathetically said,

 
“Nothing can ever be simple for you Sara,”  

My reply was, 

“That’s what my mom has been saying my whole life.”

Because she is such a great nurse and prepared for anything, she had an extra needle with her. I half heartedly agreed to try a third time. Still cursing to myself, I started to really worry the port was still too deep, and that was why it wouldn’t work. We moved onto trying with the third needle and they worked as a team, trying to move and rotate it until we got blood return. No such luck. 

However, something happened–this is why I said “semi-successful”. Stephen pushed down onto the needle, and with that pressure we finally got blood return. When he lifted his hand off, and they tried to flush it back into me, it didn’t feel right. I couldn’t exactly explain it, but it felt like we were inflating the port like a balloon. After experimenting, we learnt that only with that extra pressure from his hand that the port worked. My nurse could feel a difference in how it flushed with and without putting pressure on it. 

So…. what do we do about it? 

My nurse figured that I probably just need a longer needle. We tried with 3/4 inch long needles and maybe it wasn’t long enough. They make 1 inch needles, so she thought this would solve the problem.  We ran into another hiccup from all of this: after working at the port we had to put a gauze and dressing back on because the incision opened a little. 

What is the bright side in all of this? It is a straight and clean looking incision, so I’m thanking the surgeons for a nice straight cut at least.

The plan is to try again next week, but my nurse asked my doctor to contact our local Oncology Unit to see if the nurses there would access it this time in case there are any issues. Our local oncology nurses see ports a lot more than my home care nurse so she thought it would be better for our next attempt to do it there. 

The Following Week 

Four days later I was laying in bed and reached across my body to grab a cup of tea and something hurt in my chest around where the port was. It felt like a stinging or scraping sensation and it was strong enough I stopped moving dead in my tracks and took a few deep breaths.  Kind of like when you stub your toe really hard.

Given my experience with a central line before, this struck me as a strange sensation. I felt nothing like that with my central line. There was an adjustment period when it ached, but never hurt. 

The next day as I showered I noticed my incision was leaking. The small part of the incision that didn’t close was about 1/8 of an inch long and it looked like diluted blood coming out at a steady rate, part of me thought it wasn’t a big deal and it didn’t look infected, but I sent a couple pictures to a friend who is a nurse and she said to go to the hospital. While I spent an hour debating if I would go to the ER or not, the scraping sensation came back and this time it lasted longer.

I went to the hospital and after a few hours in the ER the doctor took a couple swabs to send away for cultures just to be safe. He also put a dressing back on the incision to make sure it stayed clean. While I was waiting in the ER, I had a call from the Oncology Department to come first thing the next morning. 

Our Second Attempt to Access My Port 

I put Emla cream on as soon as I dried off from my shower. I rubbed it in well and did it every 15 minutes before my appointment. When I got to the Oncology Unit, my first impression was that the nurses were so friendly that my nervousness melted away a little. 

I explained about our first attempt with the port, and why my home care nurse thought I might need a 1-inch needle. After feeling the port they said it was close to the surface and wasn’t tilted or angled. The nurse prepped everything while I asked more questions, and then they asked if I wanted to see an actual port. Of course I did! They showed me the practice dummy and pulled the port out of it so I could see how big the thing actually is, which was bigger than I expected. I also learnt when it was placed “too deep” that it couldn’t mean too deep into my chest cavity, or else they would have gone into my ribs. There wasn’t a lot of room to place a device under my skin because I’m flat chested, so there isn’t a lot of extra tissue to work with. We concluded that “too deep” meant that the length of the catheter was too deep (too far) into the artery.   

Once the nurse was ready with the needle to puncture through my skin and into the port, she mentioned she could see where the incision had opened and leaked, but it looked clean and not infected. As she readied me for the needle, she said she hoped the Emla cream worked for me, and as the needle went in I flinched. It was impossible not to notice, and she said “oh, you felt it!” which prompted me to ask, bewilderingly, 

“Is it possible not to feel this?”  

After the needle was in she checked for blood return and it came. Relieved, I thought we were in the clear and I could get back on track and use the port, but when she went to flush it, I saw her face and I knew it wasn’t right.   Fluids were bubbling out of the incision when she flushed fluid into the port, all I could do is laugh and say, 

“That shouldn’t happen, should it?” 

From this point she said she would remove the needle, there was clearly an issue. Our next step was to call the surgeon, and lucky for me both surgeons worked that day. When the nurse removed the needle she put more Emla cream on for me, expecting the surgeon might want to access it again.  They also sent me for an x-ray in the meantime so they could see what was going on.  

Next the surgeon came down to see me and as the nurse expected, she wanted to access the port. The Elma cream worked! I didn’t feel the pain, just the pressure of them pushing the needle in. At this point the surgeon was checking it out, getting return and flushing. As she was doing it I felt a suctioning feeling inside my chest where the port is and even worse: it made squeaking noises. This was the icing on the cake, and I was a becoming grossed out by everything. I turned to look at my husband and asked “Did you make a noise?” the obvious answer was no, he definitely didn’t. Then I asked if anyone else heard it, for fear it was all in my head. The nurse was great, she said she could hear it too, and it wasn’t in my head–but would be louder for me than them. 

The last thing that happened was when they pulled back on the syringe for blood return, Stephen noticed it was sucking in my skin around the opening in the incision. At this point the surgeon said she would go back in, it appeared there was a crack in the catheter where it attaches to the port; she figured she could just trim off any cracked part and then reattach it.   

 

Next I was in the OR and it all happened quickly which was nice; I didn’t have that much time to think about it. As I was on the surgical table, the nurses were prepping everything and both surgeons popped their heads in and said I would be going to sleep. I told them “you made my day!”–I didn’t want to be awake and present. The anesthesiologist came in and I was out. 

 

When I woke up in recovery, we learnt that the x-ray had shown the catheter had detached from the port, it wasn’t just a cracked line. I asked a nurse how often it happens and they said in the couple years they worked in the OR they hadn’t seen it happen before. On my way out of the hospital I told Stephen I was buying a lottery ticket. My entire life I seem to be the odd one that the rare or unexpected things happen to–so why couldn’t I be one of the rare people who win the lottery too? 

The second surgery was on December 20th so there was a good long break from anything related to my port because of the Holidays. We planned to try again with the oncology nurses on December 31st. 

I saw my doctor just after Christmas; we talked about the surgery and she had gotten the OR reports back. It turns out the catheter had migrated away from the port by 2 centimeters. I don’t know how long it was detached and how quickly it can migrate, but I like to think if it happens again that awful scraping feeling will be my warning.  In retrospect, the painful scratching sensation could have been the catheter when it was detaching or moving? No one has told me that is what happened, but it seems logical.  

Our Second Attempt to Access my Port

The day I went back to see the oncology nurses I was nervous and took Ativan before I went. I also properly applied the Emla cream. When I got there, she was kind like that last time and so empathetic; I told her I was nervous and she was great about all of it, making me feel as confident as possible. 

Having the needle inserted didn’t hurt, and we got blood return. When she flushed, I felt nothing-just as it should be. The port was working! Instead of removing the needle she put a dressing over it so I could go home and administer my meds. That night when we did my infusion I’m certain my behaviours were annoying, my nerves were still getting the best of me. It would take time before I stopped being nervous when we access it.   

I’ve had the chance to use my port for about 8 weeks now since it has been working, and every time we get the needle in I worry blood return won’t come. It will take a while for me to feel confident with it. There have been a couple times when I feel something pinching, and it will take time for me to trust it doesn’t mean something is wrong.  

What is my opinion of the port?

If you are reading this because you found yourself searching through Google trying to learn more about PICC lines, central lines, or port-a-caths for whatever reason – I hoped this story would help.

There are a number of reasons a person might have a port put in, and I know from two separate surgeries that it’s kind of scary and there can be mishaps along the way but it sorts itself out. Talk to your doctor and surgeon and ask lots of questions. It has been about 10 weeks since my surgery and when I saw one of the doctors today I was still asking questions; maybe it is annoying – but the more informed you are the more comfortable and confident you’ll be with your new hardware.

Compared to the central line a port makes life so much easier. If I could have had this choice in the beginning I’d have taken it. The other great thing about a port is that you can leave it in a lot longer; for me this is a great option as I’m expecting another 1.5-2 years of treatment. Even once I’m not using it anymore, I plan to leave it for a little while. When my central line was removed I didn’t think I’d need anything like it again, but life proved otherwise – like usual.