One year ago today, I was in surgery for my Power Port. It seems like so long ago, and also like I just got this thing. The surgery itself was shitty as fuck because I didn’t do great on the type of anesthesia they used and I subluxed a bone in my neck (among other things). Still, at the end of the day, there I was with my new Power Port, glue smeared on and all.
Why did I get my port? I have Dysautonomia (POTS) and I faint a lot and get very lightheaded. Infusion therapy is one thing that helps a lot, but I have fragile and crummy veins and I needed a central line so I could continue to get my infusions. The week before I was due to get my last infusion before my surgery was so bad that the nurses almost couldn’t get a line! I was so lucky we were able to get my port done the following Monday.
Since it has been a year I wanted to post some of my thoughts on how healing has gone for me. I heal very slowly from things due to my Ehlers-Danlos Syndrome, and probably also from my unspecified autoimmune disorder (we’ll get to a rheumatologist eventually, I’m sure!!) and it definitely was a bumpy road to recovery with this thing.
For starters, it took me about three weeks before I was able to sleep okay. Then we had an ER run somewhere around that time, and the woman who was accessing me did such a poor job with it, that it was very uncomfortable to sleep on and I had to go through the whole healing process all over again for another couple of weeks. On and off for the first six or seven months of healing I would feel okay with my port, and then I would have an access at the ER which would make the healing process drag out a bit more.
ER nurses are just not as adept at dealing with ports as other nurses. This is not to insult ER nurses, they just don’t see as many ports as say the cancer ward or the Infusion center so they don’t have as much skill in that area unfortunately. They may be able to access you, but some of them have some bizarre technique. I had one nurse access me so poorly that my port was actually tilted for a few weeks afterwards and my normal infusion nurses were having a hard time accessing it! It was very painful, and it did eventually “go back” but I’m always a bit nervous letting ER nurses access me now.
It’s also a more painful surgery than most doctors would lead you to believe. Sitting in Infusion, most patients told me that they were surprised by how much it hurt. I needed help to shower for the first few weeks, and I had a hard time getting comfortable sitting or laying down. Master Pravus helped me tremendously during this time. Many other patients say the same. I have definitely had worse surgeries since then (my ileostomy was worse to recover from, definitely) but I’ve had much easier too.
I was told I’d be in terrible pain for my endometrial ablation and my doctor prescribed a bunch of narcotics for that, and I barely used three the entire six weeks I was recovering. I wound up using a few days worth of narcotics to recover from the port surgery, and I had to ask for them special and go in and make an appointment that same day of the surgery because they told me to just take Tylenol and it wasn’t helping enough (of course, I got a neck injury too, so maybe it wouldn’t have been as bad if I didn’t, but we’ll never know that now).
Another thing I didn’t think would be a problem with my port was driving in the car. My port is on my right which can rub against the seat belt. Up until now I’ve always just put the seat belt right behind me while we drive (across my lap and behind my shoulder). Is it the safest? No, but it keeps it from rubbing on my port.
Recently, Master Pravus bought me a “Port Softie” which is a little sort of pillow that you put on the seatbelt so your port won’t rub. The Port Softie makes it easier to ride in the car though, and I like it a lot. Plus, mine is leopard print! It was very inexpensive (five bucks plus shipping) so it’s a nice little gift for someone who is going through chemo or needs infusion for some other reason (like me). It was really sweet of him and touched my heart.
On a similar note, you can also have your port put in on the left and it won’t rub, but I have heard that ports on the left side tend to have more trouble than other ports. Overall, I haven’t had too many problems with my port so I wouldn’t change anything about placement. There are other places to have ports put too, but this isn’t really a “how-to” post. I’m just a patient who wanted to talk about how my first year with a Power Port has gone.
I remember that shortly after my surgery I was so self-conscious about my port! I don’t mind having scars and all that, but I was worried about people asking me about it. I didn’t want to explain what it was or what it was for or any of that. While Dysautonomia is not considered a rare disease, nobody has ever heard of it and I can never think of a quick couple of sentences to describe it to people who ask. It’s complicated. Not only that, but the actual port itself is visible, not just the scars. You can even see this thing through my shirt, depending on the shirt! No, it’s not terribly noticeable unless you know to look for it, but yes it is definitely there. If I don’t wear a bra you can see it easier (I think that when I don’t wear a bra, the way your skin hangs makes it more visible) and certain things like tank tops and such will make it a lot more visible.
When I first got my port, I tried a lot more to hide it. I would wear more high-cut shirts mainly because the glue they put on me was so gross. It collected lint and dust and they told me not to pick at it and to leave it on until it washed itself off. After almost a month it hadn’t “washed itself off” (and I was SO GOOD) and so a nurse at Infusion took it off for me! HA! Still, in the past year no one has made a single comment asking me about my scars or my port in public, and as time has gone on I have felt less and less self-conscious about it. I now wear whatever the fuck I feel like and I don’t give a fuck if I wear something low cut and you can see my port.
My tits have long been my favorite feature about myself and it was something that (in the beginning) was hard to wrestle with because even when the port eventually comes back out (it can’t stay in forever) I will always have this scar there, and my bust will never look exactly the same. That’s okay though. The quality of life I’ve gotten from having my port has been so wonderful that I can’t even imagine my life without it. Plus, I hear chicks dig scars.
Speaking of my tits, Master Pravus was squeezing my tits a few days ago and he said to me:
“I’m so happy your port eventually healed up enough for this!”
I couldn’t agree more! In the beginning it was taking so long to heal that we were even worried we’d never get me back in a rope harness. A silly thought, most things do heal if given enough time. We started slowly, with rope that didn’t touch my port and as time has gone on we still haven’t put anything directly on top of the port but it hasn’t stopped us from putting ropes directly next to or surrounding the port in any way.
Master Pravus has always been a “breast man” though, and for a while he had to stay away from my tits while the port was healing, and that was kind of torturous for him. We really wanted the thing to heal up though and not get infected so we were trying to do all the right things. So the other day when he was squeezing my tits and reminiscing over when we couldn’t do that, it was a big deal for us.
I don’t know how long the port will stay in, but I’d be happy to leave it in forever. Even if I didn’t need infusions anymore (and that would be pretty fucking sweet because I hate getting up early on the weekends to go in and get them) then I’d be happy to leave this thing in for just blood draws. You need to get accessed at least once per month to get Heparin, but that’s no big deal. I could put up with that because I highly doubt I would be able to go an entire month without needing blood work of any kind.
The only thing that would make me take my port out right now, is a serious problem (like sepsis) or if my doctor said it had to come out for some reason. I’ve never had a sepsis scare (thank goodness!!) though I’ve had a couple of times where we had a hard time accessing my port even at Infusion, but even with all that it’s still ten times easier than it was before I had my port put in. If my port ever had to come out, I would definitely have another line put in ASAP.
I am SO glad that the nurses talked my doctors into a port instead of a PICC line. A PICC line would have made showering so much more difficult. I would not be able to enjoy my little “tubbies” outside with Master Pravus either. Plus, the risk of infection with a PICC is much higher. Don’t get me wrong, they are excellent when you need a central line for short periods of time (like a month or less) but the longer you need it, the riskier it is. Again, I’m no doctor, but that’s what my nurses tell me.
Not having to be constantly accessed is really great though, and I like not having to worry about hiding actual tubes all the time. Again, I’m not knocking people with PICCs! They can be a great option, but I needed a long term line, and this has been much less of a hassle than a PICC would have been in my case.
For my first year, I’m pretty pleased with my port. The goal of my treatments is still (among other things) to need less infusions with time and not to need my port more, but as I said, I’d definitely leave it in if it wasn’t causing problems just for my blood work and random ER trips. It may have taken a while to really “settle into” but if you’re out there reading this, and you’re not sure whether you want to have a port put in for your infusions, I just want to say that in my case, it really made my life so much easier.
My veins are still trying to recover from all the damage we did to them before we got the port installed (about two months of weekly infusions made it almost impossible to get blood draws without my port now) and I would not want to go back to the way things were for me before this. Yes, getting a port is technically surgery but it’s day surgery and not terribly dangerous even if mine was a bit unpleasant. Even if I had to go through everything again in the exact same way I still would, it has improved my life that much.
Happy one year Port-a-Versary to me!