Sometimes it's hard to let go

I'm celebrating a pretty major milestone this week, something that has been a long time coming. Nope, not the dog walking - that's so two weeks ago. I had my portacath removed! For those of you who don't know what that is, I'll explain...

A portacath (port) is a central line that is surgically placed in your chest for infusions. Scott called it my usb plug. If you need a lot of infusions (chemo, IVIG, etc) and have crappy veins like I did, a port is a great thing. However, it is not without risk and hassle. Mine was 'installed' for IVIG back when they thought I had CIDP and needed endless infusions. I kept it as backup for the stem cell transplant and have been waiting to get it out since. You may recall that my first port got an infection and nearly killed me in 2018 (I wrote about it here). A port needs to be used or at least flushed every 28 days, so you can never really forget about it. Needless to say, I was over the moon when I finally got the call two weeks ago.

I was told that the procedure would take all of 15 minutes and that I would be fine to drive myself to and from the hospital. Great. I remembered how quickly and easily my first one came out and was not at all nervous. I should have known better.

I showed up to Ambulatory Care as planned. It was a bit of a homecoming as I basically lived there for 4 years and hadn't seen many of the nurses and staff in ages. They all fawned over my hair and made a big deal about how well I was walking. I felt right special ;). Soon enough I was called in for the procedure.

I was ready and thought I knew what to expect. But, being my body, things did not go as planned. The surgeon prepped the area, cut me open and started to pull (this is normal) but my port was having none of it. Apparently it liked its home and was in the process of being assimilated (perhaps my body is the Borg...hmm). It seems tissue was growing around the tubing in the vein. Apparently this can happen but is rare. Of course it is. The surgeon made some phone calls and tried a few things but it wasn't going anywhere. An hour or so later a new plan was made.

"Well, we have a plan but you're probably not going to like it." Just what I wanted to hear. "I'm going to refer you to interventional radiology in Halifax. They'll call you with an appointment for next week. Meanwhile I'm going to sew you back up and give you some antibiotics in case of infection." 

I sighed, "Don't we have an interventional radiologist?".

"We did, but he left last year." Of course he did. What could I do? I agreed and went home.

I got an appointment very quickly. Luckily friends were willing to let us stay in their empty condo for the night so we didn't have to deal with a hotel in the middle of the worst covid outbreak to date. We drove to Halifax Monday evening on roads that were eerily empty. It kind of felt like a zombie apocalypse (or how movies depict zombie apocalypses, I have never experienced one first hand).  

Tuesday morning I arrived at radiology. This time I was nervous. I've had one too many things go wrong and really did not want to end up stuck in a Halifax hospital. Luckily my anxiety was mostly unfounded. It took over an hour, 3 balloons and 2 radiologists (not to mention a couple  lovely doses of pain-killers) but it's out! Scott picked me up a few hours later and we made for home.

I haven't had IVIG in almost two years but the port was a constant reminder of the endless hours I've spent lying on a stretcher bed attached to an IV pole. I still get infusions but they are quick and far less debilitating than IVIG. In a way the port was holding me back psychologically, like I couldn't really think of myself in (kinda-sorta) remission while it was there. Hopefully that will start to change now.

I should also tell you about some of the gains I've made recently. I mentioned dog walking at the beginning of my post and will elaborate a bit on that now. The other week I was walking with Scott and Barney and decided it would be fun to see what happened if I held the leash. I haven't actually walked the dog in years and it's been one of my major goals all along. It went fine! Barney was well behaved and thrilled. We didn't go for long and I wouldn't do it alone (the risk of squirrel sightings is high) but it was awesome. 

The other fun thing I'm working on is golf! I was never a good golfer, so the bar is pretty low on this one. I brought my driver to physiotherapy a few weeks ago and practiced swinging and hitting a foam ball. It was so much fun. My swing is awkward (the afos make it very difficult to turn my ankles) but I did hit the ball a few times. I don't think I have the stamina to play nine holes, but I'm going to work on it. My goal is to get to a driving range before the summer is out. 

Here is a wee video:

That's it for now. Stay safe!