Life with a vascular port
I had my first and as yet only port inserted in 2007, when I was 40. I had seen my brother's port, so at least knew what it would probably look like and how it would perform. As we were both about the same build, I knew too how it would look on me and the decision to have a port inserted was an easy one to make.
I was lucky enough not to need IVs in any shape or form until I was 37 years old. In hindsight, perhaps I should have opted for them earlier when the idea of IVs was muted at outpatient appointments. I had a busy job at the time and skirted the idea of IVs initially - in hindsight the wrong priorities I know! Then it got to a point where I had to have them to stop any possibility of a notable decline in my health, chest-wise.
I battled with cannulae, venflons and long-lines for a three years when initially my veins were still very good and easy to access. After three years of venflons, the veins were beginning to ‘pack in' and regular resiting of cannulae was becoming unpleasant, time-consuming and very inconvenient.
Living 50 miles from my specialist adult CF centre I had to rely on cannulae being repositioned at my local district general hospital. This was possible on the first few occasions at inconvenient times at A&E, but it got to a point where staff were questioning this use of A&E, and some staff did not have the confidence to put a venflon in and were not qualified to put a long-line in causing me increased anxiety. It got to a point where my venflons were lasting just a day or so and I was told to go back to my CF Centre to have my venflon replaced and repositioned - a hundred mile round trip for such a simple procedure! So that helped convince me a port was the future!
I was assessed in Solihull by a member of the surgeon's team. We discussed the port insertion procedure and it's positioning. As I have a gastrostomy PEG button left of centre on my stomach, I asked for my port to be placed on the same side, so that I had one ‘good side' to lie asleep on and fall on when skiing! I'm not sure quite what the real logic was here, but I had to choose a side of my chest. I don't think there was a choice as to whether I could have it in my arm, but I do think there should be this choice for aesthetic reasons. Everyone is different and we all have reasons for wanting our ports positioned in different places. My arms are too thin, so the port would have looked too unsightly, was my feeling for not considering one in my arm and I'd liked my brother's port position and how it looked. I was pleased that the surgeon's team asked me at least which side of my chest I'd like it on, rather than making my decision for me - I wanted some control over what would be another long-term feature on my body!
I was given two weeks of IVs in hospital to prepare my lung function for my surgery which was to be under general anaesthetic. The surgery team were very reassuring and before I knew it I was asleep, being operated on and wheeled out in a daze, ‘fresh' with my very own vascular port. The surgeon, I gathered, was also a plastic surgeon and true to form he did a fantastic job of inserting a port with the minimum of fuss or scarring. I don't remember the post-surgery period being difficult, though I had to avoid lifting and pushing heavy objects at work for two weeks at least.
My port is positioned on my left side where my shoulder meets my chest, above and directly in line with my nipple. The scar where the line and port was inserted is about 4cm long and is barely visible. The port protrudes by about ½cm from my skin so it's not very noticeable at all, particularly when I've put a bit of weight and muscle on.
Living with my port day-to-day
The port is extremely low maintenance - I forget I've got it and it's pain-free! I have to have it flushed every 6 weeks at my CF centre or local general hospital. Some people flush their own, but I'd rather it be done by the professionals. This flushing is pain-free, just a sharp prick when the needle goes into the port and a slightly dull ache sometimes initially after the flush.
You can't see my port under my clothes and it makes life on IVs so much easier to deal with. Accessing the port at clinic is pain-free and far quicker than putting venflons or long-lines in and I have no pain when putting antibiotics through the port at all.
I can now work whilst on IVs, without worrying about knocking my cannula and dislodging the needle - this happened to me once as I left work at night, catching my venflon on the car boot, resulting in a very inconvenient, hasty trip to hospital - but hey, that's all history!
I can go to the gym with my port accessed if I feel up to it, although I steer clear of doing weights on my chest, so as not to damage the port and it's line. I continue to ski with my port, though not when it's accessed. I must admit that the port has made me more wary of skiing ‘outside my comfort zone' in case of heavy falls, but that's not a bad thing anyway for anyone. I swim happily with my port, although again, understandably not when it's accessed.
I'm not at all self-conscious about my port, although if I were younger and looking to start a relationship or surrounded by schoolfriends I could understand that my attitude to a port might be different.
I hope, for the sake of girls and and young women with CF that surgeons and medical staff listen and take on board the wishes they in particular have when having a port inserted - CF isn't just about how we feel physically, but mentally too and of course strappy tops are a girl thing only aren't they??!
If it encourages anyone to have IVs when they're needed to sort out a chest infection a port has got to be worth it
My only wish now? I just wish I'd opted for a port a bit earlier!
(male, aged 42)