Tuesday, 24 June 2014

Things That Made Me Happy This Week

I thought I'd make this a regular post because they're fun to write and it's always nice to think about all the good things that are happening rather than the bad.

1. Eating

Yes! I'm finally getting hungry again. I'm fancying lots of nice things and eating much more by snacking and having bigger portion sizes. Whereas before I'd really struggle to think of anything I wanted to eat, I'm eating pretty much anything that someone wants to cook me now. I've been out for a meal a few times and eaten a full starter as well as nibbling on everyone else's food too! I loved food so much before I had my liver and tummy swelling problems, so I'm really happy that I can enjoy eating again and should make putting on weight a thousand times easier. 

2. Clinic Day

So going to hospital isn't usually a reason to feel happy but my doctors were really pleased with me and reckon I look a lot healthier and happier than when they last saw me two months ago. I hadn't really noticed a change but now I think about it I think I do have more energy now, or at least I feel less lethargic and lazy. They're really hopeful that the new drug might be working already as I look so much better and it might be why my appetite is getting better too. They said flolan usually makes people feel sick so the fact that it's doing the opposite is brilliant. They took the stitches out of my line, which didn't hurt at all so that's awesome and it looks like it's healing up really well. I also attempted the 6 minute walk test so that if my meds start working both me and my doctors will be able to see just how much it's helped. I barely managed 30 seconds but it was much better than I thought it was going to be. I obviously would avoid that kind of exercise outside hospital as it feels awful and it isn't really safe for me to push myself physically with my heart and lungs struggling so much. The fact that I managed not to feel like I was about to die is a success in my book! 

3. Awards

I won an award! My creative writing course at university gives out a number of awards each year and this year I won the Short Story Award! I don't think I've ever won anything individually before. I've had dance medals and things but they were the kind of prizes everyone got, and I always got one of those certificates they give everyone at the end of the year. (Most Outstanding Student of The Year award, thank you very much secondary school!). But I've never won a proper award where I beat other people to get it. It's funny that I won it considering my short story module was the only module I managed to finish and therefore pass this year. Makes up for the fact that I didn't get to finish my second year. I might not have ngot a final grade but I got a nice little award. 

4. Weekend Celebrations

It was my stepdad's birthday this weekend so we had a lovely garden party with all of his family. It was a really good day even though I was pretty tired and struggling with the heat. I had to lie down inside quite a but but I still managed to play a game of croquet, (probably the only sport I can play now!) which was fun and the food was great and it was just nice to see everyone enjoying themselves. The weather was really nice too so it was a really nice calm day, just chatting and chilling out. It was a bit hot for me but I managed not to come out in a rash thanks to a new sun cream I've found! If you ever have trouble with heat rash try neutrogena's ultimate sport, which is an aerosol can of factor 100 plus sun cream. You can only get it off amazon shipped from America but it's worth it to not itch for days after sun exposure. I'm sure I would definitely have got my usual rash if I wasn't wearing it as the next day I went outside and sat in the shade for half an hour and came out in a pretty big rash over my arms even though I wasn't in direct sunlight. To be able to spend more than five minutes in daylight without coming out in a rash will make the summer a lot more comfortable. All in all a pretty good weekend and there's still lots of nice cake left over to stuff my face with over the course of the week. Result! 

5. Healing Powers

My line is all healed up now and feeling good! It took a while to stop hurting when I laid on my left side, and when I reached for something with my left hand but it doesn't hurt at all now, even when I give it a good clean and change the dressings. The wound at my neck just looks like a freckle now. I can feel a bit of hard scar tissue under the skin but it's not painful. I'm also happy to say that I'm so far not coming out in a rash from the dressings. I usually get itchy when I have heart monitor stickers on too long so I thought I might have trouble with the dressings but they're actually pretty comfortable. When they get wet they're a bit rubbish at staying on so I'm making a bit more of an effort to keep it dry and that seems to be working well. 

Nice, clean and tidy wound! The patch is an infection precaution, I'm not sure how it works but it's supposed to reduce bacteria around the line. Makes it look a bit less disturbing too! 

6. Wimbledon!

Yes, Wimbledon has started and I finally have something I can just stick on and relax to. Evening tv is rubbish at the moment so I'm really low on things to watch on catch up, and with the World Cup on most of the quiz shows I usually stick on aren't running. I do really enjoy Wimbledon and it feels like summer has started now it's on. It's quite rare to have a sport where the women's is televised just as much as the men's. I actually prefer watching the women's tennis because the matches are usually under two hours whereas the men's can start to drag on over four or five hours especially when we get to the tougher matches. I'm not sure who I'm backing to win yet. I think it'll be good to see the good old Serena vs Venus Williams final in the women's but we'll see what happens. I feel sorry for people who don't like the football, tennis or cricket at the moment though. There is literally nothing else on tv at the moment.

7. The Bake-Off Advert

Have you seen the advert for the new series of The Great British Bake-Off yet? It is pure genius! Mary Berry cartwheeling across the bake-off lawn is the best thing I've seen on tv all year. Seriously, tv producers, you need to get some good stuff on! I don't think the bake-off actually starts for a while yet but I'm really looking forward to it, as well as strictly, a bit of I'm a celebrity and a new James Corden creation would be brilliant. I really enjoyed The Wrong Mans last year, which was on straight after the Bake-Off. Good tv please come back soon! Anyway here's the Bake-Off Advert if you haven't seen it. http://youtu.be/FMbr-xFMjFo

I hope someone or something made you especially happy this week! Thanks for reading! 

Wednesday, 11 June 2014

I'm home!

I managed to get out of the hospital on Saturday, which was great because nothing happens in hospitals on a Sunday so I probably wouldn't have got out till Monday. There was so much stuff to fit in the car as the huge delivery of medication was sent to the hospital so I could start the drug. We somehow managed to fit all the boxes of drugs and syringes in the car along with my suitcase and all the stuff I had accumulated while I was in hospital and with my wheelchair taking up the boot. Honestly, I have no idea how we did it! 

As well as those huge boxes there were three smaller ones which we ended up putting in bags so we could fit them in the car a little easier. When we got home it was time to sort it all out. 

Yes, that is a lot of stuff! And the best thing - that's only one months worth! We get a delivery every month from bupa healthcare, which the NHS use for IV meds as they're much more reliable than the people who delivered my iloprost and it's a bit more serious if I run out or a pump breaks. We've actually found we don't have enough of a few things so we're probably going to have to get an extra delivery this month. 

The line itself isn't nearly as annoying as I thought it was going to be. To be honest I don't really notice it at all. The wound is still a bit painful because I still have my stitches in and if I move or stretch a bit too much the stitches pull at my skin but I think the actual line is pretty painless already. I'm getting my stitches out on the 20th June at my Bristol hospital so I think it will be a lot more comfortable after that. I've had stitches out loads of times so I'm not too worried about having them out. I could feel everything when she put them in and I know having them out isn't going to be as unpleasant as that! The pump doesn't get in the way much and it's not really a pain being attached to something all the time. Even at night I'm not tangling myself in tubing, which I thought I would be. Overall I'm pretty happy and I actually prefer it to the nebuliser I was on before. Having a bath is slightly more effort but even that is getting easier, I just hang the pump on the shower curtain and clip the line out of the water with a bit of plastic wrap on the connections so they don't get too wet when I wash. I'm being extra careful about infection, you're supposed to be able to shower, get water all over the water-proof dressing, over the line and the connections but I really don't want an infection so I'm doing as much as I can to prevent it. (I may have recently placed an order at Lush so I'm definitely not giving up on my lovely baths!). Minus the horrible operation, it's been a pretty smooth ride and I'm happy with how things are going. 

Here's the pump. It's pretty small, a little on the heavy side, at least a bit heavy to hang around the neck for too long, so I usually just carry it around and rest it on my lap when I'm sitting. The buttons are really stiff so you don't have to worry about leaning or sitting on it. You'd have to press two buttons at once to turn it off and it starts alarming if you do manage to do that. 

Making up the meds is getting easier every time and isn't really too much of a bother. It takes about 20 minutes in the evening to make up two batches of the drug, then I attach one to me and the pump and the other one goes in the fridge so I can do a much faster change over in the morning when I'm all half asleep! It only takes a few minutes to put on the cold one. It has to be changed every 12 hours because it's a time sensitive drug that starts to loose it's efficiency after 12 hours and the cold one will only last 12 hours in the fridge if it's then got to last 12 hours attached to me. It's important to change it on time but in a disaster I would only start feeling ill after either the drug had lost all it's potency or I ran out of the drug in the syringe. However they said if I did get stuck somewhere, in traffic or something, I'd have to phone 999 and get an ambulance or police to take me home so I could do it because the pressures in my lungs can rocket up and then putting the new one on late will cause them to plummet again and that's obviously not very good for you.

I'm not getting any side effects at the moment from the actual drug but when they were upping the dose in hospital I was getting pretty bad headaches and hot flushes, which I assume will come back every time they up the dose. But seeing as it wears off that's not too much of a worry. I feel like there's less pressure in my head since I've been on the new drug. Before, I couldn't lie down very comfortably as it felt like all the blood was rushing to my head, but that's definitely better now so whether that's the drug or not I don't know. I'm also starting to feel a bit hungry again, which is actually annoying at the moment because my tummy is swelling like mad and I'm getting full super quick so I can't actually enjoy all this food I'm finally feeling like eating. They told me at the hospital it would be three months till I started feeling any better and that'll probably be true for the breathlessness and the pressures in my lungs going down but I think because the drug causes the blood vessels to dilate (which is why it causes headaches and a hot flushing feeling) it might be already helping a little bit with things that aren't really symptoms of my disease but have turned up because my blood vessels are under so much strain. Who knows? But I feel like it's a good sign. 

There's not much to see at the wound site at the moment because there's a patch on it that's supposed to prevent infection and because I have all the stitches it's not sitting around the line like it would normally so all you can see is the patch but I'll probably post a picture when the stitches are out and it's healed a little and isn't a bit gross with dried blood. I realise some people don't like wounds but I'll be wearing a transparent dressing so it's what everyone will see when they see me and like I've said before, we mustn't be ashamed or our scars! 

Thanks for reading! 

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: www.stacie-lifeisworththefight.blogspot.com 
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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