Port Operation!!

I wrote this blog on a word doc before i got the internet in here, so it is written pretty acurately which i think is good and quite important. Although i can still recall most of my feelings of how i was at the time, and it still gives me butterflies in my stomach, i dont remember all the thoughts i was having at the time. So this blog is going to show how it all was for me at the time of it happening rather than in hindsight.


Please bear in mind this will be a long post!

Date: 13^th February 2010

Title: Before and after port operation

Op prep and being put under:

So when I first went in for a regular check up a few months ago I asked my doctor for information about ports. At the end of that appointment I wished I hadn’t even mentioned it. He said that it’s an option we need to start thinking about taking, and I ended up going on IVs that day, and at the end of the third attempt to get my line in, he said that it’s definitely a route we need to discuss in more detail… It went from me asking for some info about ports, to me possibly getting one myself in one appointment!!

Over the next month I think it was I was talking and thinking about ports a lot. It was the front of my mind every single day. I finally agreed to have one done after much thinking; even my doctor said I was the only patient who had thought the most about it. I agreed in the end as it got to the point where I was just over thinking it all and if I didn’t say yes then I would still be thinking about it!

After that I was given dates for when it could be done and I was to decide between them. Firstly I was told 29^th January which when I was told these dates was only about a week away! Or the 12^thFebruary, which was much better for me, as it meant I could get Uni things sorted before hand as well. So I booked it all for the 12 February. Mum booked the day off work so that she was able to be there with me and my best mate/house mate came to the hospital with me for support as well. Which i was glad about as it meant mum wasnt going to be alone while i was under.

After all the hassles I explained about in my blog about getting a bed, I ended up having to just go there Friday morning. That whole morning before i went in i was still trying to see if i was going to have a bed or not. While i was arranging all of that still, mum was currently on her way to Bristol to come and be with me! So between calling the hospital i was ringing mum as well and in the end i still hadnt heard anything by the time she was in bristol, so i rang her and told her to come to the house and well go from there. Soon as so as I hung up from her the hosptial rang me and told me to just come in ASAP and while i was still being operated on they would be finalizing a bed for me, I had to ring mum and tell her not to get on the bus, and lucky i caught her when i did as she was just heading for the bus to get to the house! I told her the plan and said im getting the bus to town and would meet her outside the hospital... Finally something was getting sorted!

 As soon as I was told to just go in ASAP, my nerves started getting the better of me. The shaking began, although some of that was possibly from hunger and thirst. I got to the hospital and met mum outside there and we went straight to the Queens Day Unit, where I told them who I was and such and then the nerves really started getting me. My shaking was worse, and my chest was tight, my hands went all clammy and my mouth suddenly felt like the bottom of a bird cage! All that in less than 30 seconds – scary!

I was told to sit in the waiting area and was eventually called by a nice nurse in scrubs who showed me to a small side room where I met the anethetist. He asked me some questions about any previous operations, about my CF and how my chest was that day. I explained that not having been able to drink I hadn’t done my nebs so had not cleared anything that day. He wrote this and some other info down and then made my nerves even more worse by telling me I was going to have a tube down my throat for interbation!!

I had been wondering this, but as it was only a minor operation I assumed it wouldn’t be something that would be used. Apparently I was wrong. I asked if I was going to be awake when he put the tube in my throat and he assured me I would be asleep by then, but I might be coming round when they took it out. This I didn’t like either. And to hear I was to have a sore throat afterwards as well was not the best news as I hate them.

So he left and I was left being asked questions by the nurse who had shown me in to the side room. She got me to fill in some more questions and sign consent forms. Took my obs aswell, and my blood pressure was quite high as was my pulse. She put it down to nerves but wrote it down just in case.

Then physio came and saw me and talked about the procedure with me a bit and she took my pulse as well, which turnt out to be 112!! So pretty fast and she could see I was extremely scared. I felt a bit silly for being that scared but I was and looking back, still think I was, well within my rights to be that scared.  After seeing the physio I was shown where to get changed into my sexy gown and stockings to stop deep vein thrombosis and something else that had a big word. I wasn’t exactly listening to anything but the blood rushing around me. I got changed and then went to the waiting room where I was able to tell mum and Emily some things I could remember, before the surgeon called me into another small room where he told me how the procedure was done. This kind of helped calm me and didn’t help calm at the same time. At least it assured me of one thing – that he sounded like he knew what he was doing! He told me ill be fine and that my port would be accessed in surgery before I come out as I was going onto IVs afterwards.

I went back to the waiting room, then no sooner had my arse touched the seat was I called to go to theatre. I hadn’t realised I was actually having to walk there myself! I prayed my legs would carry me and not collapse with the jelly like state they felt like they were in.

I walked through the double doors into the theatre room, and saw everyone in scrubs and gowns and such and that’s when my freaking out hit the roof and went through it! I don’t remember much from that point as it all kinda went in slow motion. I was told to lay down on the bed after being asked for the fifthteenth millionth time that day if I was pregnant! I layed down and coz I was shaking so much (like a leaf blowing in a very severe gale force wind) I was covered with about 3 or 4 blankets. Then I had these little “electrode” pads put on my lower back and two on my back at the top, they were then connected so I could be monitored properly. I then had my cannuler put in, by this time I was in total tears and was rubbing my streams away with a hand full of gauze someone had given me, and for once didnt even realise they had put the cannuler in at all!

I had the anaesthetic given to me via the cannuler, which was really cold! Made my whole right arm feel like it had been plunged into ice water. I think it was to help me relax as well. I started to go really dizzy and I said about it, and they said its fine, im meant to be feeling like that, and its totally normal. Next thing I see is the mask coming towards me, and I start feeling like I couldn’t breath, I realise I was starting to really really panic then, and there wasn’t anything I could do. I was petrified to put it bluntly.

Someone told me to breath steadily and deeply and to try and stay calm – easier said than done when they aren’t the ones shitting themselves!! I must have managed it anyway as I remember the mask coming half over my mouth and then after a few mins it was totally over my mouth and I don’t remember anything after that until I woke up.

Waking up after op and recovery:

I remember suddenly being aware of people talking and machines beeping around me. Then I could feel a tightening on my left arm at the top, and then it would loosen. I wasn't totally sure what it was at first. I think I went back to sleep again, as I then remember opening my eyes briefly and seeing a bunch of nurses in the corner and I couldn’t keep my eyes open so I went to sleep again. I woke up again and realised the tightening and loosening on my arm was blood pressure machine, and I could feel the finger thingy to measure my stats on my right hand. I could feel a mask around my mouth, and my first thought was that my mouth and throat were as dry as a desert!! Never had my mouth been so dry and sore. I think the anaesthetist person must have seen my eyes open as she came over, I don’t member what she said, I know I asked for a drink, and she gave me some water. It’s the only time I think water will ever taste like heaven! She switched the machines off and took all the things off me. I was still really bleary and groggy and just about managed to hold my cup of water properly! Once I was a bit more alert the porters came and moved me to another part of recovery, where I know I asked for mum.

Still being all bleary and not being about to see more so as I didn’t have my glasses on (mum had them with her) I didn’t actually recognise mum walking down the corridor towards me. All I remember seeing and thinking was that’s one worried looking lady walking towards me! When she got closer I realised it was mum, and she held my hand while I drank and spoke a little bit, I was still really groggy so wasn’t able to say much, that and my throat was sooo sore! I'm not sure but I think I may have fallen back to sleep again while mum was there…

Eventually my doctor came to see me and my dietician to arrange snacks to be sent up for me to the ward. I don’t really recall much of what was said by my doctor and I don’t think hes expecting me to remember much either haha!

Emily (the best friend/housemate) came to my bed as well after a while, and me, mum and Emily was sat in the recovery area for a few hours until I was finally taken up to the ward 10. Mum and Emily met us up there and I was taken to my room. This was the tricky part. I had to get up from the bed that I was in and get into my new cleaner one…. Not having stood up for some hours and still being very groggy this proved to be a small challenge for me.

As my knees were killing me with pain from not having been moved for a long time, I was eager to stand up and not at the same time. Only in my eagerness to stand I nearly exposed myself haha! Thankfully the porter helped me to no do that and helped me to the new bed where I was sat. The numbness had started to wear off and the feeling of being punched in the chest was starting to make it self known - where the port had been inserted.

As the evening went on, mum left to get the train home, and physio came to see me, which is when Emily left as well. Having had a general anaesthetic my chest had been shaken up a lot and was really manky from being so still for so long. So this meant things were very very hard to shift and my cough was very rough and harsh. It wasn’t easy at all, as coughing hurt my already raging sore throat (from being interbated) and made my port area really hurt. But I managed to get something shifted with a hyper tonic saline neb with physio. She was very happy and gave me some tips of supporting my port area when coughing, and gave me a nice towel to put over to apply some pressure when coughing.  We stopped after I did two nebs, and she told me to rest and just do the nebs some more when I was feeling more up to it. I did some more later that evening and again in the morning.

I was given some pain killers – codeine and paracetamols that night aswell and they worked a charm for helping to deal with the pain. Didn’t get rid of it totally but helped manage it enough that I was able to be comforatable. If the pain was still too bad then I was allowed tramadol aswell if I wanted it. I didn’t sleep much at all that night though. I slept for an hour or two and then woke up every hour on the hour, as the pain killers had worn off, and the side my port is in on my chest is usually the side that I sleep on, and as I couldn’t lay on it, I wasn’t able to get to sleep properly on my back.

So that was my blog I wrote on a word doc the day after my operation. While I was writing that I remember feeling all the butterflies in my stomach again, and it was then that I think it hit me that I'd had an operation and it was all over now! I dont really care if anyone reading this thinks im being a dramatic as it was only a minor operation and nothing really compared to some operations that happen for people for various reasons. But it was a huge deal for me, considering that when I was younger I always said to myself that I would never have surgery... in hindsight a silly thing to say to myself when I have CF, but then I was young, I didnt understand what could be to come as I got older. I think i only said that to myself as i used to hate my scar ive got from my operation from when i was a baby on my blocked intestines. This was another reason i was so scared about my port op, as id not had one since i was born and clearly dont remember that!

Now I know how the procedure goes I dont think I'll be as scared about having it done for when the time comes to have my port changed.

Who knows the next time I have an operation could be to take my port out for good, as a cure has been found for CFers! I can only dream until that day arrives...