Monday, 5 October 2009

It's time for a Portacath catch up!

I am so sorry that, once again, I have neglected my blog :(
I have had quite a lot going on over the last few weeks and lots to tell you about.
Firstly, let me update you all on the portacath situation.
I went down to Derriford Hospital on Tuesday 22nd September. I had been told to go in at my usual time of 9.30 am, but that my 4th Tysabri infusion wouldn't be done until the portacath had been fitted, which would be in the afternoon. What they hadn't told me and I hadn't even given it a thought, was that there was a likelihood that I would be kept in overnight! My Dad had taken me in, so he came back home and Martin was able to put a few things together for me and then come down and see me in the evening.
It was a good job that I was there early, because by about 11.30 am, the porters came to take me down to the radiology department. I didn't really know what was going to happen or how the procedure would be done, which was probably a good thing, because I didn't have time to worry about it!
The consultant radiologist, who was performing the procedure, came and spoke to me and explained that I would be given a sedative, I would still be aware of what was going on but I also wouldn't, if that makes sense!! He said that they would be putting the portacath in the right side of my chest. They would have to make an incision just below my neck and then also further down, about half way between my collar bone and my breast, where the portacath would be positioned.
What I hadn't realised, was that it would be completely under the skin. There wouldn't be any valve or access point left out on the skin. That means that it can't be seen at all, only the scars from the wounds. It was explained to me, that when I go for my infusions, the nurse will feel for the port and when they find it, they will just pop a needle into it - just like a pin prick - and then they will be able to flush it etc and then hook up the infusion. This is great news because I don't have to worry about anything. The portacath itself, only needs flushing every month, and because I have my infusion every four weeks, the nurses will do it for me each time.
The other thing that I didn't realise is, that not only can they put the infusion in through it, they can also draw back blood from it too. This means that I should never have to have a nurse search for my veins again!
So back to the day! After the consultant had talked to me and I had signed the consent, I was then taken into the x-ray room, where there were a couple of nurses and everything was set up. I can't lie, by this time, I was getting pretty scared! They started by giving me the sedative, which they did by putting it straight into the vein in my neck. It hurt like hell and I burst into tears. I am such a big baby!!
They then numbed the whole area and I really couldn't feel anything. I had a nurse holding my hand, just to reassure me, so I shut my eyes and just let them get on with it! I don't think I fell asleep, because I remember people talking around me and there were a couple of times when I felt things going on, but one of the nurses said that I had slept through it!
Anyway, before I knew it, it was all over and I was being transferred back onto my bed. I was taken back outside, where they explained what had been done, but to be honest with you, I was feeling quite out of it at this point. I was told that I should have at least four hours of bed rest. I was taken back onto the ward & after a bit of fussing, I really did fall asleep!
I woke up again about three hours later, when I was able to speak to Martin and get him organised to come down and see me.
There was a bit of confusion, because the nurses weren't sure whether I needed a chest X-ray to confirm that it was in the correct place. But when they contacted the consultant, they were quickly told that he was a radiologist and so therefore was absolutely sure it had been put in the right place!
So all that was left now, was for me to have the Tysabri infusion and this was to be done through the new port! It has to be hooked up by a registered nurse so when she was available, she came along and hooked me up. It was so good not to have to be prodded and poked to find a vein for access. And I couldn't feel it going in at all. This was going to make life so much easier for me.
Martin arrived whilst I was having the infusion and it was so good to see him. I was just disappointed that they wanted me to stay in, after all everything had been done. The portacath was in, the infusion had been done, but they wanted me to stay so that they could keep an eye on me. Looking back on it, I know they were right to do that, even if it did mean that I didn't get much sleep!
I had been given my instructions on looking after the wounds. I had the portacath wound and I also had the wound just under my neck, where the stitches were. They were dissolvable stitches so I didn't have to worry about getting them taken out! I had been very sore for a few days after I had come home. Unfortunately, by the first weekend after the procedure, the stitches wound was really hurting and it appeared to be weeping. I was given a strong course of antibiotics and told to keep an eye on it. The last thing I needed was for the portacath to get infected, because that would mean them having to take it out again.
My Dad was changing the dressings for me and I was also popping to various nurses to get it checked too. I had a swab taken at one point, but the results of that said there was no infection. This, of course, was good news, but it doesn't explain why the wound has been so sore for nearly two weeks now and though that soreness is a 100% better, the wound itself is still weeping. I am leaving it open during the day and dressing it overnight from today, so hopefully that will stop the weeping and help it heal properly.
So there you have it. I now have a portacath fitted in my chest, I can't feel it and I can't see it - apart from the wounds - so that is great news for me!


  1. Amelia, I am so excited for you!!! I really hope and pray that this will be a solution for you and getting the Tysabri will be less and less stressful on you. I know you are now taking time away from working and taking the time to take care of yourself. I sure hope this is all working for you and you are much happier.

  2. Thank you for your great blog...
    I'm getting my portacath on Nov. 18 2009, and really don't know what to expect! Good luck with the Tysarbri!
    Be well, and be happy! :)

  3. Thank you for sharing your story on the portacath. My husband has MS and is on his 10th infusion. He has extremely small veins and has always had trouble with having blood drawn, so imagine an infusion each month! Blood tests are required at each infusion as well. Most times it takes 2-3 attempts to get the IV going for the infusion, only to find no draw back for the blood tests! Great another couple of pokes and prods! His nurse last week suggested a portacath and we are seeing his MS Doctor in a week. We're hoping this will help improve his treatments, blood tests and all of the MRI and Brain Scans. Again, thank you for sharing.