Updates

I've spent a day and a night in hospital but I still don't have a new pacemaker! I don't know why this always seems to happen to me. I went to a hospital appointment and my doctor managed to get me a bed so that I could have my pacemaker changed straight away as I explained that I'd been feeling extremely tired since my pacemaker has moved into back up mode. Unfortunately it didn't end up happening and said they could do it Tuesday. So I immediately said I wanted to go home but then it turned out that if I went home they would do it till Wednesday. For the sake of one day I wasn't going to spend the whole weekend in hospital not eating properly and sleeping badly because that's just going to make the whole operation experience worse. So fingers crossed it's going to happen on Wednesday! But I've been here before. They cancelled my line insertion three times before it happened. 

Today has been a bit of a strange day because the doctors and nurses kept changing their minds about whether I was having the operation or not and when it was going to be. I'm glad I have a date to work up to now and I've got a nice weekend before I have to go in. They're doing some filming in my city for the film Through The Looking Glass, a sequel to Tim Burton's Alice and Wonderland so I'll have to take a look at some of that over the weekend or early next week and I also have a Chinese takeaway planned with my Aunty and Grandparents on Sunday. I'm also enjoying Tumble, which is a Strictly Come Dancing/Dancing with The Stars style program where celebrities try gymnastics and circus skills. I love dancing and gymnastics so it was right up my street and a pretty good watch for some easy Saturday night television and it's on nice and early, which is great for me as I'm so tired! I'm going to concentrate on these nice things and deal with Wednesday when it comes! 

While I'm here, I did a guest blog post for the American Pulmonary Hypertension Association blog, which is a great blog full of loads of advice for people living with chronic illnesses and definitely worth a look! www.phagenerationhope.blogspot.co.uk

There's a PH association in most countries and it's a great place for advice and information about the disease and treatments if you're newly diagnosed. I would recommend looking at the American site aswell as I think they probably have the most to look at and even post medical conferences on their YouTube channel if you're after really in depth information.

I hope you all have nice weekends planned too. Hopefully I'll have a new pacemaker next time you hear from me! 

Photo James took of me, looking surprisingly happy to be in hospital! 

Five Things That Made Me Happy Last Week

1. The Bake-Off

Yes the Great British Bake-Off has started! The baking competition is back and it's still good. TV has been pretty terrible recently and as I'm nearly always at home doing nothing, I need good TV entertainment. The Bake-Off is one of my favourite shows because it's easy watching and has that real feel good element. And we all need a bit of that in our lives.

2. Spending the week with James

My Mum and her husband went away for a few days so my boyfriend came to look after me. It was nice having the house to ourselves, doing some cooking and lounging around. We mostly rested as I was feeling so tired but it was a really lovely few days and we had some good fry-ups and a Chinese take-away. We went to TGI Friday's one night, an American themed restaurant I used to live as a child, and had a really good meal. BBQ ribs, onion rings and sweet potato fries! I'm not a big meat eater but it really was good and sweet potato is the best discovery in the history of vegetables. Can't get enough of the stuff! (Notice how all my happiness seems to revolve around food? Dieters hate me!) 

3. Knowing my mum had a nice break

My mum does a lot for me these days and it was really nice that she got to have a little holiday because summer just isn't the same if you haven't been anywhere. Before I started the Flolan we didn't think she'd be able to leave me but I'm really glad she got that break and had a lovely time. 

4. Discovering the private booths at my local cinema

I usually book my tickets on the booking machines because if you go to the desk in a wheelchair they sometimes give you a bay instead of a seat and I like a seat. I don't have anywhere to put my drink in my wheelchair! But I'd received some vouchers from cineworld after I complained that they're lift wasn't working and not being informed until after I'd used my Orange Wednesdays 2 tickets for 1 code to buy my tickets so even though I got a refund I couldn't use my code again and had to pay an extra £8 for my tickets! Anyway I had to go to the desk to use the code and they said would I like to use the access booth. Yes please! A private booth and a disabled toilet a couple of steps away, it was much more convinient and let's be honest it's pretty cool getting a private booth. 

It's not the closest seat to the screen but as long as it's not 3D I don't mind. Being on water tablets I really like the close toilet because otherwise I'd have to get whoever is with me to wheel me to the loo in the middle of the film. It's great to know it's there because I hadn't a clue. It's a brand new cinema but it might be worth checking with your local cinema if you struggle with the accessibility of the cinema.

5. Getting my fabric for my new pouch

After I forgot to turn my pump on a few weeks ago I decided I needed to make a pouch with a plastic window in so I can see whether my pump is on or not. This week I got the delivery of the fabric I ordered to make it with. I needed a nice thick fabric because the pump is quite heavy and I don't want it to just fall apart straight away. It's always a worry ordering online but I'm really pleased with it. You'll have to wait till I've finished it to see! 

Not Another Operation!

Well you can't say my life is dull! I had a routine pacing check today and out of the blue it turns out my pacemaker is extremely low on battery. It's been working on back up mode to conserve battery, which is probably why I've been having more palpitations than usual, which I had just put down to a combination of coffee and my medication. I had a blog post half-written about how tired I'd been recently and wondering why but I think we've solved that big mystery now. I actually wrote that it was like I just couldn't get going. Well no wonder with my pacemaker giving out lower voltage impulses! 

So it looks like I'll be in hospital in the next week or two having it changed. I've not had one done in adults before so it'll be the first time under local anesthetic but seeing as I react so badly to general anesthetic I'm actually quite glad of that. It can't be as bad as having my line fitted anyway. There was no way they gave me enough anesthetic for that one and I had no sedation or anything. I'll be making sure this one goes differently. I'm going to tell them every five seconds that my anatomy is back to front after my last surgeon didn't have a clue. Meanwhile the settings have been adjusted so it drains as little of the battery as possible. 

The annoying thing is I booked a holiday four days ago! Fingers crossed I'll still be able to go. Hoping for a nice early date for the operation so I'll be all healthy and not too sore for my holiday! 

Just my luck eh? I wouldn't have needed another pacemaker if it could just have lasted until my transplant! Well at least it should sort out this chronic tiredness I'm suffering with though I think I would have prefered it to be down to a simple vitamin deficiency but a big urgent problem is more my body's style!

Theatre Trip!

If you only want to know one thing about me, let it be this - I love musicals! Apart from really niche musicals like The Rock Horror Show I'd say I pretty much like every musical ever made. From really serious ones like Les Miserables and Sweeney Todd to the traditional well-hated The Sound of Music to the modern ones like Wicked and Billy Elliot, I love them all! I don't think I could pick a favourite, I like them all for different reasons. I used to dance a lot before my health stopped me so I love a good musical with lots of dancing in but as long as the songs are good and the story isn't too loosely put together I'll enjoy. Yes, I'm one of those people who not-so-secretly really enjoyed Mamma Mia.

So when I heard Singin' in The Rain was on at the Bristol Hippodrome, I was pretty keen to see it. We got tickets two days in advance and managed to get a seat on the aisle close to the disabled toilet. Only trouble with that was, I spent the interval getting up and down for everyone to pass me. I can usually get away with putting my legs to the side but there were a lot of old people who were struggling so I had to keep standing up. Obviously I don't look disabled so I feel like it looks really rude not to get out of the way properly for the elderly. I digress! 

If you haven't seen the film (firstly, why not?) it's about the change from the silent film era to the era of the talkies and follows an actor at a big studio as they struggle to create a talkie film with an actress who has the most annoying voice you can imagine. It's a comedy with lots of dancing and huge musical numbers. The songs were written first and the story was made to fit around it so as storyline goes it's a bit loosely put together but the music is what makes it. It's funny and makes fun of itself, which is really refreshing. I studied Classical Hollywood at university but I'll spare you a long essay about this film. It's good - go watch it (unless you hate musicals, in that case it will be your worst nightmare). 

You really need a good cast to pull off the acting, comedy, singing and dancing and the show had just that. The female lead had a singing voice like velvet and all the dancing was amazing. They had real rain on the stage and the sets were brilliant considering that this is a touring production. It was true to the film but they had cut down on the weird dream sequence that looks like it dropped out of another musical, so it held it's pace better than the film. It was a great feel good watch and we were all singing on the way home! 

Woops!

I had another blog post written for today but then I nearly killed myself and I thought I'd better blog about that instead. I'm almost tempted to just pretend this never happened. This is honest blogging here. 

I forgot to turn on my pump! 

Yes I actually did that. And it was eleven hours before I noticed. I was told at Hammersmith that I'd start to feel ill within the hour if the medication was stopped. Say I was late home, got stuck in traffic, or the pump ran out of battery while I was out. Eleven hours I had no medication going into my body. From everything I've read sudden reductions or stopping the medication can cause huge withdrawal and what they call 'rebound PH', which is when the pressures in the lungs shoot up suddenly and basically cause you to become very ill very quickly. What did I feel? Nothing. Hence why I didn't notice for so long. I turned it back on. Also nothing. You would expect the side effects I get from the drug to get worse while my body tries to deal with a bigger amount of drug going in, but nope, not me! My body just rips up all the text books. It's good obviously that I wasn't ill because it means the background medication I'm on is helping the flolan to work. But it wasn't the best way to find that out! 

I spoke to my nurse in Hammersmith and she said actually most people do it once. So I feel a bit less of an idiot now. It's actually really easily done because the pump makes no noise at all and you're supposed to keep it in a little pouch and unless I knock it on something or drop it I never look at it to check it's still going. You have to hold down a button twice until it beeps to start it and I can imagine it's easy to just not hold it down long enough (they're quite stiff so they're not accidentally pressed) and not notice that it hasn't started. I struggle with mornings so I probably wasn't thinking straight and I was in a bit of a rush to get ready for a Doctor's appointment so I probably just forgot to press the button altogether. Honestly, I could have sworn I turned it on. But obviously not.

Anyway, to make sure it doesn't happen again I've set a reminder on my phone to go off 45 mins after I wake up to remind me to check the pump is on and as a long term plan I'm going to make a replacement pouch (which I've been meaning to do for ages anyway) with a little window in. The kind of plastic window that's used in wallets for you to keep photos behind so I can see the screen on the pump and that will make it so much easier for me to notice any problems if I do end up doing it again. Which I won't! 

Meanwhile, I'm looking forward to having to sit in front of my doctors when they say, "so, you forgot to switch it on? For eleven hours?" Yes, I'm just that stupid! 

Good News!

I'm cured! No, not really but I am feeling better! My new drug is definitely starting to work. 

A month ago I couldn't get to the bathroom from my hospital bed in Hammersmith and I had to stop twice going up the stairs in my house. Now I'm probably managing over double the distance that I was before. Although when you could only walk 15 steps in the first place that isn't much but it makes doing things a thousand times easier when you can walk 30 steps without getting breathless. To potter around the house you don't really need a great deal more than that. It's made a huge difference to me. 

More than simply walking further, I feel better in myself. I still feel tired. Actually I probably feel more tired because I'm doing more but I'm not in pain anymore. My tummy swelling has come down a little. Not enough to stop me looking pregnant but enough to ease the pain, which was the main problem. I feel like I can concentrate better now, probably because I'm actually getting oxygen to my brain. I feel safe enough to drive now and I've got my seatbelt exemption, which just makes things a thousand times easier because the belt hurts my pacemaker on one side, my line on the other and the strap across my stomach feels like I'm being squeezed to the point if explosion because of all the swelling. Obviously continuous flinching and rearranging my belt doesn't make me the safest driver so I've held off till I've got that. I still can't go wherever I want because I need someone at the other end to help me get around but I'll be able to see my gran whenever I want and take her out. It was brilliant for when my boyfriend came down because we were able to go out quite a lot. Bit of shopping, a trip to the cinema, lots of meals out and a day in the country village Painswick - can't get a much better week than that!

Even though the Flolan is helping in a huge way, I'm not massively keen on the side effects. My cheeks are swollen, I have rashes all over my arms, I'm permanently hot and I keep getting these weird hallucinations at night that my random body parts are growing and shrinking really fast. It's hard to explain, think of Alice in Wonderland and the "drink me" potion. I have to get up turn the light on and wait for it to pass. I keep forgetting to mention this to everyone because it only happens when I'm trying to get to sleep at 1am. It's only the rash that's a bit too much for me to cope with and I think that's mostly because it's so hot here in England. I've tried steroid creams and two different allergy drugs from the doctor but nothing is shifting it. I'm waiting on advice from Hammersmith but I think I'll have to lower my dose to get rid of it. I'm not sure if it's the Flolan but my hair is falling out like mad. I haven't got any bold patches or anything but the amount of hair that comes out when I wash my hair is scaring me. Everytime I run my fingers through my hair a good ten strands fall out and I notice it on my bed sheets and clothes too. Hopefully I still have some hair on my head a few months from now!

The fact that it's working is brilliant because it means that when the call comes it's going to be a lot safer than when I'm weak and sickly. So I think it's worth a few side effects for that! 

I've had a really nice week, itchy rash aside. It's been busy and I feel a bit wiped out now but it's refreshing to feel tired from actually doing something rather than spending all week resting and still feeling tired.

I've got a few blog posts in mind for the next few weeks so stay tuned!

At the Rococo Gardens in Painswick in the boiling sun! 

Proof there was sunshine in England this year! (My city managed to have a flood and a drought at the same time a few summers ago!)  

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!