Wednesday, 28 May 2014

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! 

Thursday, 15 May 2014

5 Things That Made Me Happy This Week!

1. Baths
The simple cure for cabin fever is a good bath. I can't explain how much I'm loving baths at the moment. After a bad day a good lather of soap and a scrubby sponge is all you need to wash away the worries of the day. After a good day, what better way to relax than a sweet smelling bath? Sitting around all day feels a bit icky and dirty and no matter how ill I feel, I can always have a lie down in a bath. With my liver being so swollen it's the only time of the day I can get it to stop hurting. The warmth and boyancy of the water really takes the pressure off. It makes a lot of difference having that time without any pain. My liver isn't agony by any stretch but being uncomfortable 24/7 isn't pleasant and having that hour off makes it pretty easy to deal with.

I love a good smelly bath and I don't get much luxury in my life at the moment so I feel more than justified using up all of my lush products. I love lush for many reasons. They're a lovely green company started by a married couple with a great sense of humour. And their products smell amazing and do great stuff for your skin. Even the bubble bath makes my skin all soft and lovely. I was never that interested in moisturising until I smelt some of theirs. Nice smells and nice skin is the way to keep a girl happy! 

2. Swimming
On a similar subject, I went swimming on Thursday! I say swimming in the loosed sense of the word, what is actually did was float around. But my muscles feel well exercised and I didn't get too puffed out, which is great. The reason I went is that once I have my line put in I won't be able to go swimming anymore. Firstly the infection risk is high when your submerging something that has direct access to your heart in water that people have probably peed in. Yes the dressings are waterproof but they're not really designed for submerging, more a light shower or a quick wash with a damp flannel. There's also a risk bacteria could get into the line through the open end. For me there's extra reason because I'll be on a pump that can't be removed for more than a minute or two while refilling the medicine and I imagine it wouldn't appreciate being submerged in water. I know what your thinking but I can thankfully still have my baths. (That was the first thing I googled! Even before, how much does it hurt?). As long as I don't have it super deep I should be able to sit and lie in the bath with access site out of the water and I can just put the pump on a stool next to the bath to keep it out of the way of the water. Though it's a good idea to use clean water from the tap to wash my chest rather than the bath water. The good news is they're no longer putting the line in this week so I can go swimming again! I'll be having the line in the week after now.

3. Sunshine
I have a bit of a love-hate relationship with the sun. Or rather, I like the sun but the sun doesn't seem to like me. I come out in sore and itchy rashes after as little as ten minutes under the sun. So I have to coverup with a shirt and stay in the shade when it's hot. I used to only get it three or four times a summer when I was a child but the last two years it's really gone mad and it's like I'm completely allergic to the sun now. I also burn really easily. Last year I burnt my arms sitting in the shade with factor 30 sun cream on. So I can't really enjoy the sun to the fullest but it's just so lovely to see it shinning out there and relaxing in the shade with a cold drink is lovely. Everyone's so much happier when the sun is out and I feel my mood lifted too. As long as I avoid the dreaded heat rash, I very much enjoy a hot summer's day. 

4. BBQs
Like every other British person, we had a BBQ this weekend. In fact we've been having them all month. My mum is brilliant at BBQs. Everything is chargrilled and tasty, rather than burnt to a crisp and raw in the middle. They're just so good! We probably use the BBQ more than we use the oven in the height of the summer. There's just nothing better. We had my grandparents over on Saturday for a BBQ and it was the most perfect day. I felt really good, I usually start getting tired an hour into any kind of social gathering but I felt good all day apart from being insanely full after we'd eaten! It's always nice when I'm feeling well when I see my Gran because I know she worries about me. We've always been really close and I just love her to bits. It's not nice having everyone worried about you when you're ill but at least you get to see how happy they are when you feel better again. 

5. Papworth
The last that made me happy this week was going to see my transplant team at Papworth hospital because they were really positive about everything. Obviously I'd had a bit of a rough patch and I wondered if they were going to freak out about it. But they just said it was great how well I'd recovered since being in hospital. They want me to gain weight like everyone else but they weren't really pushy about it. They trusted that I was doing all the right things. Sometimes I feel like doctors think I'm a complete idiot. I have to assure them I'm looking after myself. As if I wouldn't be trying my hardest to stay alive long enough to get my transplant call! So I was really happy with that. And the appointment was really fast too so I was back home by 5 0'clock. I was expecting to still be at the hospital at that time! 

These are all the things that made me happy this week! It's been a good week! 

Tuesday, 13 May 2014

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! 

Template by