Transplant Awareness Week

I'm a bit behind with this post. Transplant awareness week was actually last week but it's all relevant information no matter what time of the year it is. This year I'm on the transplant list and have lots of information about donating and receiving organs that I'd like to share with you. I feel like general information about transplants is hard to find so here's some information about being a donor that might be interesting.

I obviously have a vested interest in you joining the donor list but of course it's okay to not want to. This isn't suppose to persuade you to donate but give you all the information on donating if you're thinking of joining the register or you already have. 

This year the big push is to talk to your family because being on the list isn't enough. Whether you've signed up or not your next of kin has the final say. If they decide they don't want your organs to leave your body there's nothing the doctors can do. If you haven't already done so, do sign up as well because your next of kin might well have changed by the time you are considered as a donor. When your done reading be sure to have a chat with any family member that's around and remember to ask them what they want too. 

Now, to all the parents out there. I hate to ask but I'm a petite person and it's likely I'll need a child or a teenage donor. So I'm asking you to take a minute to think about what you'd do with their organs if, heaven forbid, something happened to your child. In the shock and the grief your decision making isn't going to be on top form. As morbid as it is, it's good to have a think about it now. It's not a decision you want to regret, whatever way you're leaning towards. I'm not trying to persuade you to give away your child's organs, I'm just asking you to think about it. To start making a decision now rather than when you're blinded by grief because of course your protective side is going to be going into overdrive in that situation. 

I write now to all those who believe themselves too old or too unhealthy to donate. Whether your elderly, a smoker, a heavy drinker, a big eater, a heart-attack, stroke or cancer survivor, you could still save multiple lives. People as old as 80 have successfully donated even such vital organs as hearts. On the transplant consent form you are asked if you will accept organs from over 60s so it's far from a rare occurrence. Smokers too are on the consent form. In fact 50% of donors are smokers. Whatever kind of lifestyle you have they will always check your organs. Even though gay people can't give blood (is that still true?) you can still become a donor. I'm afraid to say that it is actually on the consent form but it's not as bad as you think. It's under the bracket of "high risk lifestyles", which also includes intravenous drug users and anyone who has a higher than average risk of catching HIV. Seriously, if a heroin addict can donate an organ I'm sure there's a chance you can. It's highly unlikely that you will have managed to destroy all of your organs by your lifestyle or past illnesses. Your ability to donate depends far more on the circumstances of your death than your body's health before you died. Even if they manage to get just a kidney from you that's still a life saved. And remember they're after your eyes, blood and tissue too, which could save a life or at least dramatically improve lives. If all else fails science might want your organs for research. You never know, they might start a study into the exact disease you die of and your organ might bring about a cure. It's always worth signing up and talking to your next of kin. If Keith Richards is somehow still alive with all his organs working at least enough to keep him going then anything is possible! My grandfather was told he had 5 days to live. That was about 8 months ago and he's still going. So you never know what's going on inside!

They do only use nice healthy organs for transplants but nice healthy organs aren't only found in nice healthy people. So don't rule yourself out. 

As a side note here are some extra little assurances: your body will look the same whether you've donated or not so if you have your heart set on an open coffin funeral or your religion dictates a certain type of funeral then donating doesn't mean you can't have that. Likewise if it's important to a family member to see your body before you're buried then donating doesn't mean that can't happen either. If you're American, donating doesn't mean you're family will have any extra medical bills. I don't know if anyone thinks this but being a donor definitely doesn't mean doctors will make any less effort to save your life and doesn't mean you have any less right to stay in a coma for as long as it takes for someone to decide it's the right time to turn you off. 

I'm sorry this post is rather morbid but it's important for you to know these things and to talk about organ donation. So please make sure you do! I think it's important for people to know that anyone can donate. I think the excuse, "no one would want my organs" gets thrown around a lot. Please, let the doctors decide. 

Lots of Thoughts

I had a Papworth appointment last week that went so smoothly and so quickly that I completely forgot to make a post about it. The traffic was pretty bad that day so we were in the car for about eight hours all in all and to be honest I think it was a bit much for me. I was really exhausted and we decided next time we'll probably have to stay overnight. I'm currently getting Employment and Support Allowance, which is really helpful for stuff like that because petrol and hotels and meals add up to quite a lot.

The appointment only took about an hour. I had a blood test to check that there's no changes in my blood that could affect the transplant and only waited half an hour to see the doctor. He was really happy with how I'm doing, so much so that I don't have to go up to see them again for three months instead of the six-weekly appointments we were having before. They said I should go and enjoy my summer and they can always see me early if there are any changes. They're still a bit concerned about my weight but I told them that I'd started to put some pounds on and am eating much better so I think they were satisfied. My doctor was really positive about my line. It seems he really wanted me to have it and thinks I'll really benefit from it. So fingers crossed! 

I've been feeling a lot calmer about the transplant recently. I feel like I can think about it more without feeling scared. I have these moments of blind panic where it's like I suddenly realise how huge this all is. It's like my life is a book that you'd read thinking, there's no way this would all happen to one person. I mean, I have heart failure and my lungs are under pressures of over 100, that's big! I'm on the transplant list. And eventually I'm going to be that person who had a heart and lung transplant. That scares me a bit. It just doesn't seem real. It's too scary to think about. I probably think more about things I can do after my transplant than I worry about the thing itself. I think that's probably good for me. Watching Glastonbury made me think about how that might be something fun to do after my transplant. Looking back at my freshers photos at uni made me excited to be able to go out and have fun again. If I can get uni to let me do freshers again, even though I'll be restarting as a second year, that would be brilliant. I won't be able to drink but I catch energy from other people so if everyone else is bouncing around that'll get me pumped up for a good party! I'm getting excited now just thinking about it. I stop myself sometimes because I don't want to get too excited incase it doesn't work out as well as I'm hoping. I think it's important to be positive but I don't want to be delusional because if things don't go right it'll make it that much harder to deal with. I think I'm doing okay mentally but I do have an appointment with some kind of mental health person at palliative care soon, which might turn out to be helpful. To be honest as long as I'm not feeling any anxiety and I'm sleeping well I'm happy but it'll probably be useful to have someone on hand if I do start freaking out. 

I've got plenty to enjoy at the moment though. I'm doing really well. I feel really tired but I feel good in myself at the same time, if that makes sense. I'm more keen to go out and do things but I don't have any more energy to do said things. I still like to do them because I sleep better if I'm more worn out. Otherwise I end up waking up at 3.00am and not getting back to sleep for hours. As long as I have one thing a week that I can look forward to, I'm happy. Even if it's just a nice pub meal out, a shopping trip or a visit to my Grans, or even something little like a parcel delivery and a trip to Sainsbury's. This weekend we're going to have a Fourth of July BBQ with my grandparents so that's what I'm looking forward to that now. My boyfriend was here this week, which was really nice. We went to the cinema to watch 22 Jump Street, which was really funny and had a nice meal at Zizzi's as well as some good chill out time. He'll be down again soon too so that's another thing to look forward to. I've actually done a lot more this week than usual. I did pay for it with a really tired out day but it's refreshing to be tired out for a good reason rather than after weeks of constant rest! 

I hope you all have a lovely weekend and I'll be back for a hopefully less deep chat soon! 

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! 

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! 

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! 

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! 

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! 

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!