Sunday, 1 June 2014

One Year On and Groshong Line Insertion

I was feeling a bit tired on Thursday to write a good blog post but Thursday was my one year blog anniversary. To be honest I though I'd missed it ages ago, for some reason I thought I started my blog in March. An awful lot has changed in the last year. Back when I started I was on new medication and was starting to feel better. The effects wore off pretty quickly but I still enjoyed a fairly healthy summer and I was at least feeling good at Christmas. All in all not a terrible year. 

It's pretty much all gone downhill from there though, which I guess makes this blog a lot more interesting at least! It's been great writing a blog. Especially these last couple of months as it gives me an opportunity to let my loved ones know how I'm doing and opens up their ability to support me. There are lots of people I'm very close to that I don't see every day. I feel like it's a really easy way for people to find out what's happening with me. I hope I've been of some inspiration to people and I'm really flattered by the amount of views I'm getting. I feel like it's a good time right now for ill people to get their stories out there and I think this is probably down to the social media buzz around things like the no make-up selfies for cancer and the amazing story of Stephen Sutton. I think it's lovely how humans latch on to these personal stories and it's great social media can spread them so quickly and to such a wide audience. I feel like when you can't make a difference doing what you'd like to do then sharing your story is all you have. Our stories are the only things anyone is going to have in the end. (Deep!) 

Currently I'm still in hospital having just had my line fitted. This week has been great as I got to meet Stacie who is another blogger around my own age who also has CHD and PH. Have a look at her blog here: 
Our stories are pretty similar and we're both really positive and it was great chatting with her. She's already got a line and she's been on the medication they're going to put me on so it was extra helpful to have a chat. She's also waiting for a heart and lung transplant so hopefully we'll meet again at Papworth as I don't come to Hammersmith very often. 

On the subject of the line insertion. I'm sorry if you've found this post because you are currently waiting for a line insertion because I have to say my experience wasn't very nice at all but as far as I've been told my experience was unusually bad. In all honesty it was an awful experience. I've not had the smoothest run up to the line insertion either, it having been cancelled twice and then up in the air for a while. It's really bad luck that everything that could go wrong did and it all happened to me! It was very painful, something I really wasn't expecting. I was already feeling stressed out as I'd been waiting an hour and a half in the waiting room just to find out if it was still being done because they were worried about my bloods. Then I got in there and surrounded by a big X-Ray machine and my face covered with a sheet I was feeling really claustrophobic, and then the pain! It didn't feel like it was under local anesthetic. I felt a lot of what was happening. And then half way through the guy says, "is your anatomy unusual in any way?". For those who've lost track I actually have a completely back to front heart. So I was obviously pretty stressed out after that and I was terrified that something was going to go seriously wrong. I had a lovely nurse holding my hand and stroking my head throughout and I think without her I couldn't have done it. So it wasn't good, all in all. I've never been that scared, stressed out and upset over an operation. I don't know if I made myself ill with the stress or I was reacting to the local anesthetic and radioactive dye they used, probably a bit of both. But I felt pretty rough for the rest of the day, had quite a bit of sickness and tiredness and everyone kept saying how awful I looked. My doctors were really sympathetic and they're looking into why it was so awful for me as they said they haven't heard of as bad an experience as I had before. 

I will stress that it is unusual for it to go so badly, it was a lot of little things that just made it so horrible and I'm sure it's probably just really bad luck that it all just happened to the same person and of course that person had to be me. Well it's all done now at least and so far I'm only getting little headaches from the new meds so hopefully that carries on going smoothly as they start upping the dose. I'm at four nano grams at the moment. A nano gram is a unit that equates to your weight so it's different for everyone. For me four nano grams is an infusion rate of 1ml per hour. They want to get it up to six nano grams before I start using my own pump (I'm on a huge hospital one at the moment) and up to eight before I go home. At the moment I'm praying they send me home at the weekend because I'm confident with the meds now and the nurses are really happy with how I'm doing. It feels like I've been here forever and I'm so desperate to get back to my own bed and to have a nice hot bath! Just to get out of this room would be great. I'm pretty sick of looking at it! When I get on my little pump hopefully they'll let me get out of the ward for a bit of change of scenery. I feel I am slowly going mad! 

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