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! 

Hammersmith Hospital

It's strange being in London and not being anywhere near the hustle and bustle of the shopping centres and business buildings. Hammersmith is next to the prison Wormwood Scrubs and is slightly in the middle of nowhere. It's all residential and little corner shops, though admittedly not shops that I'd feel safe walking into. It's such a contrast to where I live in the country but when I'm in hospital I might as well be anywhere as all I can see from my window in a brick wall and metal structures and that's usually what I see from every hospital room I stay in. 

My admission yesterday was awful. Asked to get here at 9 we felt guilty for deciding to get some more sleep and arrive at 11 (although when we phoned them, they said that that was fine) and then they said they wouldn't have any beds till 2 and put us in a waiting room. We ended up going to the restaurant and having a bit of early lunch but I must admit I was feeling pretty abandoned and not cared about after the procedure has already been cancelled twice and this was the third date we'd had to come into the hospital. I don't function very well on lack of sleep and was desperate for my bed so I could lie down and rest. Well we got there eventually at 2.30 but by that time the hospital day is pretty much over so I was feeling pretty annoyed that we'd come in and wasted a whole day. 

Things did start picking up though and my specialist nurse came for a long visit to explain everything about the line. It being the second time it was cancelled she wanted to admit me because the doctors are much more likely to do something if I'm in hospital rather than at home. Not the best reason to spend two weeks in hospital but I'm so desperate to get this line in and over with that I don't care how long I have to stay here as long as they do it. Unfortunately I've had a chest infection and I'm on antibiotics so they're being a bit hesitant to do anything while there's any infection so we're waiting for blood results to come back to see when I'll get the line fitted. Meanwhile they're going to teach me how to make up the medicine, set up the pump and care for the line once it's in so at least I'm not sat here doing nothing. 

The good news is because this is a university hospital I can sign into the wifi with my student login from my university and it works really well. I've got Netflix, iPlayer, 4oD and even an app which means I can watch live tv so boredom shouldn't be too much of a problem. In other news the food is much better here than usual hospital food. I had a curry tonight which was pretty tasty. I thought the chicken looked a bit dry so I just had the sauce and the rice. For a hospital to successfully produce a curry is pretty unusual. The food at my Bristol hospital is terrible and Papworth isn't much better. We also got some meal vouchers for the hospital restaurant in case I don't like the hospital food or I just fancy something different because they really can't have me missing meals. The restaurant is really good too and that'll save us a lot of money because I'll probably get quite a lot of food from the restaurant just because it's always going to be nicer than the stuff we get on the ward.

I've been trying to mix up my meds today so I know how to do it but I ended up with the drug all over my bed so that was a great start. But I'm here to learn and I've got plenty of time to practise before I have to be able to do it properly. I'll be doing it twice a day eventually so I'll get used to it. 

Looks like I'm going to be here for a while and in view of the good wifi I hope to be getting some blog posts up over this week. I'm all settled in as you can see:

Thanks for reading! 

Weight loss, hospital and upcoming excitement!

I've had a bit of a rough time of it since my last blog post. My abdomen started swelling more, my breathless got worse, I couldn't eat and I had zero energy. After a few days spent entirely in bed we decided to go to the hospital to sort everything out. The main problem was I didn't eat so the weight was dropping off me and bare in mind I my swelling problem meant that I should have been gaining weight. You can really see how the weight has gone from my upper chest and shoulders. I've found bones I didn't even know existed. They didn't really do much at the hospital. I'd already doubled all of my water tablets but perhaps they took a long time to kick in as I started feeling better after being admitted. I started eating a bit better and they decided to let me go home after a few days as it would be a lot easier to eat lots of fatty foods at home rather than in hospital. They've threatened me with a feeding tube if I loose more weight. I'm just hovering over a severely underweight BMI at the moment and even though I've been stuffing my face since I left hospital and eating between 1,800 and 2,200 calories every day I haven't actually put on any weight. Although I haven't lost any either. According to my dieting app I should be gaining 1.5kg a month so fingers crossed that happens soon!

I'm feeling really insecure about the way my body looks now. I suppose if I was big and everyone kept saying "oh my god you've put on so much weight" and "have you lost weight yet?" and every time I tried to eat people said "why are you eating that? Don't eat!" I would feel the same way. I guess it's enivitable to feel self conscious about something everyone keeps talking about and you have to keep thinking about in order to accomplish weight gain or loss. I feel exceptionally angry at those posts that crop up every day on Facebook. Those "before size zero there was something called beauty" and "no one wants to hug a stick" posts. I find these really horrible. I wouldn't say, "no one like a fat person" or "oh these plus size models are disgusting". But FYI models are skinny because it's cheaper to make sample sizes of clothes in smaller sizes because it uses less fabric. Models all have to be the same height and size as the mannequins so that fashion designers can make clothes and know that they're going to fit whatever model they employ to wear it. It wasn't like an industry got together and decided to define beauty as skinny. There's no need to be cruel to thin people! I know people say they'd kill to have trouble gaining weight but I assure you if you were in my position you would be complaining too! 

I'm slightly concerned that I'm going to look like a drug addict after my transplant being so thin and with the medications making your hands shake. At the moment I look like some kind of child refugee who's got some serious bloating issues. Practically I'm constantly really uncomfortable with my bones being so close to the surface of my skin. I'm sleeping on a foam mattress and I still wake up with either my shoulder bones or my hip bone feeling seriously bruised. Size zero isn't all it's cracked up to be. I have a renewed sympathy for people with eating disorders. 

On to some good news, I have actually been feeling loads better since leaving hospital. I've had a run of really good days, which is brilliant. As long as I have a reasonable nights sleep I can pretty much garentee that I'll be able to get out of the house if someone invites me somewhere or I make plans, which is a huge improvement. Of course I will have the odd bad day but at the moment I'm enjoying my run of good days. 

My upcoming excitement is that I'm going to have my Hickman line fitted next week. Okay, so I'm weird to be excited about this but just the act of doing something that might possibly help my disease is much more preferable than sitting around waiting for the next lot of bad days to land me back in hospital on a feeding tube. Although I swear I'm going to be so annoyed if the new medication makes me sick cause I can't be not eating again! Mostly I've heard good things about it and hey it's something to do, mixing up medications and changing dressings, which is much more exciting than sitting breathing into a machine every two hours. Even though the medications is continuously pumped you only have to refill it every 12 hours and change the dressings on the line once a week so it's a lot less effort on my part. Sure having the line fitted isn't going to be much fun and I've heard they're really painful and bruise up a storm when they're first fitted but I'll deal with that. I've had a lot of catheters in my time and I can't imagine it being more painful than that. They both involve sticking tubes into arteries at the end of the day. 

The only annoying thing is that because it's changed every twelve hours you have to go to bed and wake up at the same time every day because if you suddenly stop the infusion your body can go into shock and people have died from sudden withdrawal. So I think I'm gonna go for 11am and 11pm as I like a good lie in because I wake up a lot in the night and although I go to bed early I don't get to sleep till 12 usually. I'm never going to stay out later than 11 so I'll always be home. The morning one might be a bit more problematic. I'll probably have to get up at 10.30 to mix up all the meds in time to change it over at 11 but if I have to go somewhere. Most likely a hospital appointment I'm going to have to change it on the road, in a cafe or at the hospital, which might be a bit annoying. But I don't think there's going to be a good time to do it really. If I did it earlier in the morning I'd have to do it earlier at night, which might interrupt meals out and visiting family and friends, which will probably be more annoying. 

So you'll probably be hearing from me after I've had my line fitted or before if I have any more thoughts. Thanks for reading!