Saturday, 30 August 2014


During the last three days, I've finally seen an improvement to my pacemaker site. The bruising is much better on the actual pacemaker but has spread over my chest. It's still swollen but I think that's going to take a while to go down. Now it's not as painful and I'm moving more it feels extremely strange. The pacemaker feels very loose and moves around constantly. It feels very strange! I'm in that annoying stage where it hurts when I move but not so much when I'm still so I forget and go to pick something up and get quite a shock of pain. But I'm happy it's healing. I tend to heal quite suddenly so not seeing any improvement for the first few days was starting to get me down.

I went to get my stitches out on Wednesday but it turned out it wasn't so much stitches as one big stitch. The well experienced doctor who was looking at it had never seen one like it before. It's one long piece of plastic string with beads at each end to hold it in place. I have no idea what purpose it's serving as I can't see how a long straight bit of string is holding my skin together but somehow it is. Anyway, when she took the dressing off it bled a little so she and another doctor decided it was best to leave it a little long rather than risk any more bleeding or damage. So I'm having to go back on Monday now. I'd have preferred to get it out of the way but if the wound isn't ready there's nothing to be gained my risking it. 

I saw one of the cardiology doctors while I was there and she apologised for my experience. She said they had a meeting about it and they all agreed that letting someone cry their way through surgery without giving them any painkillers or sedation was unacceptable and that it was particularly horrible considering my age. It turned out that the doctor who did the surgery was not the one everyone had agreed on and so he didn't know that my lung disease was going to be a problem for sedation and pain relief until the last minute where he just decided on the spot it was best not to give me anything. Where as the original surgeon would have been given more information and guidelines on my particular case and could have spent a lot more time deciding what was safe as well as sparing me pain. Just like the line insertion I had and every other mistake that happens in hospital, it was a lack of communication. I could complain but all I'd get is a letter saying exactly what the doctor told me on Wednesday. They can hardly give me a gift voucher to spend on another surgery to make up for it. They know they messed up and I hope my surgeon got a good telling off for handling it so badly when it was clear I was in so much pain, claiming it was just my low pain threshold. No pacemaker, no opinion mate! 

Anyway, I'm off to Weston-super-Mare (an English seaside town) on Monday with my boyfriend for a much needed break. Unfortunately I have to get my stitches out on the way but Bristol is pratically on the way to Weston so it won't add too much time to the journey and I might be grateful from the break from driving. 

I'm really looking forward to the break but fear not I have been organised and written a blog post in advance for next week. So hopefully I'll remember to post it! 

Thanks all your support and comments. I feel like I'm well into recovering now. 

Saturday, 23 August 2014

My Pacemaker Device Change

This is my second brush with surgery under local anesthetic and I feel I might have developed some kind of bad luck with them. I wish I could tell you how much better it went than my Groshong line insertion but I don't think I can say it did.

The problem was that when I was on the table, one of my doctors popped his head in and said, "don't give her too much sedation because she has Pulmonary Hypertension." At this point I didn't really know how strong this sedation was so I thought, oh well hopefully I won't feel too sick with it because usually any kind of drug that causes drowsiness usually makes me feel sick or hallucinate. As I'm underweight I expect they probably weren't planning on giving me a huge amount to start with but with even less going in I felt relaxed for about the time it took to lay a sheet over my head and the  I felt completely back to normal. This time they actually did give me enough anesthetic so I couldn't feel the insition but the problem with local anesthetic is that it doesn't do much for anything below skin level so all the cutting and pulling at my muscle was agony and unfortunately the weight I had lost meant that he had to cut deeper into the muscle so that the pacemaker wouldn't be sticking out so much. I'm not going to lie, it was extremely painful and they refused to give me any more sedation when I asked. 

It seems to me like they should have had a proper meeting to decide whether it was more dangerous to give me general anesthetic, which carries it's own risks, or to give me sedation rather than to expect a twenty-one-year-old, who let's face it has been through a lot already, to deal with that amount of pain with nothing more than a nurse holding her hand. I agree with my specialist nurse that doctors assume the more operations you've had the easier it is but in actual fact the more you've had the harder it is because the more trauma you've been through, the more bad experiences and bad thoughts you have associated with surgery. This pacemaker change is my sixteenth operations and I can confirm, it does not get the slightest bit easier. 

But on top of all that I had to deal with the pain of a pressure dressing, pushing at all this ripped, cut and sore muscle because it wouldn't stop bleeding. Talk about rubbing salt in the wound, stamping on the broken foot, while saying airily, "oh you must have a low pain threshold". I have never been so close to punching someone in the face! Perhaps if they had given me the proper pain relief I wouldn't have been so distressed but I'm afraid paracetamol just doesn't cut it. Especially when they only give it me every six hours because I'm so underweight. Morphine would have caused more bleeding as it dilates the blood vessels and codeine makes me extremely drowsy and sick, the resulting vomiting would have caused more pain than ever. I couldn't help thinking that if they just left it alone and stopped prodding at all the swelling, changing the dressings and putting pressure on it, it wouldn't have bled so much in the first place.

Unfortunately the wound is still agony as it's more swollen and bruised than you would usually expect. Probably down to the excess bleeding, the fact that I'm on warfarin, which stops my blood clotting and my Pulmonary Hypertension medications, which open up the blood vessels. I'm home from hospital but very uncomfortable even with the combined efforts of Oxynorm (a liquid morphine they finally let me take once the bleeding had stopped), paracetamol and iburprofen. I can get it comfortable enough to sleep for the six hours I have to leave between doses so I'm managing. I'm extremely tired and sleeping through the night as well as taking two two-hour naps throughout the day. I think my body is still struggling with the trauma whilst desperately trying to repair itself.

I'm sorry I couldn't give you the usual positivity. I'm feeling a little shaken up by my experience but I've recovered from everything else to there's no reason why I won't recover from this. I tend to feel better very suddenly. Everything will be back to normal soon. Time is the greatest healer. 

This is currently what my wound looks like. 

I hope to bring you good news of my amazing healing powers in a few days time. Thank you for all your thoughts and good wishes. 

Tuesday, 19 August 2014

The Things That Made Me Happy Last Week

It's positivity time again! It's been another good week and these are the five things that made me happy!

1. Going to Bath to see my brother. 
I went to Bath on Tuesday with my mum and my gran to visit my brother who I haven't seen for a while. We had a lovely meal in the Pump Rooms, which is a really old building my Gran used to go dancing in as a young girl but now does lovely food and cream teas. And we had the most amazing coffee in a little indepent shop. You didn't need any sugar, it was that good! When I went to use the bathroom I heard the people who work there discussing how the PH of the water you use affects the taste of the coffee. Bath is great for little gems like that. We've had lots of meals out this week because I've had so many hospital appointments this week. Mum and I always have some nice food after just so the day isn't all about hospitals. 

2. Seeing the tall ships! 
In my city we have some lovely Victorian docks and every now and then a film company wants to do some filming there. We have a tall ships festival where some old Pirates of the Carribean style ships come in. This week they're filming some of Through The Looking Glass there and they've got the tall ships there at the same time as part of the set. We went down on Saturday to have a look as they were all set up for the filming, which started this Monday. It looks really impressive and we got to see the ships there with all the props set up around them: crates, barells and piles of rope, as well as some modifications to the old buildings to make them look older. Everyone's all excited about Johnny Depp because the press keep saying he's coming but as he plays the Mad Hatter I don't think he's going to be in any of the Victorian London scenes. But it's a big film so there will probably be some famous faces around. The press also reported that Tim Burton would be there but he's not directing this one. He's well known for never doing sequels to any of his films. But as a film studies student I'm interested in sets and things so I'm going to see if I can get down there when they're filming if I can but if I'm too tired at least I can say I saw all the sets. 

They used this boat in Pirates of The Carribean too but it has been burnt down and rebuilt since then! 

Sneaky picture on the set! 

3. Not being in hospital 
This should probably be on my reasons to be happy list every week! I would have prefered getting my pacemaker change done on Friday because then it would be all out of the way by now but at least I got to spend this weekend at home and have a nice end to a nice week rather than a scary operation. I don't really get nervous about things before they're happening. I'll be scared when I'm in the waiting room, about to go in, but I'm able to put it out of my mind and enjoy the weekend. So that's something to be happy about.

4. New clothes! 
My lovely mum treated me to some clothes from topshop after we had the bad news of my pacemaker having run out of battery. A lot of my clothes don't really fit too well anymore and because my belly is swollen some of my tops just don't look right anymore. So we picked up some leggings that fit nicely, some little summery jumpers and some desperately needed cropped vests so I can wear short tops without looking a bit strange with a long vest underneath. I struggle with bras because I feel like I can't breathe in them and my swollen liver becomes very sore if I wear anything remotely tight in that area so I wear vests a lot with any tops that aren't quite as modest as I'd like. I feel nice and pretty and comfortable in everything we got so I'm very happy. We used the points on my Raymond Blanc frequent diner card (I am aware how posh that makes me sound!) so as we got lunch for practically free we didn't feel guilty about a little clothing splurge. 

5. Chinese night
Yes, it's that time again. Once a month my Aunty and I got to my Gran's with Chinese takeaway and have a lovely feast followed by a long chill out on the sofa. I love Chinese food so it's a great little monthly treat. It's such a nice takeaway, nothing is too greasy and it tastes really good. It's a naughty treat but it's a good one! And having a nice evening with my Aunt and Grandparents is the icing on the Chinese cake!

Friday, 15 August 2014


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!
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! 

Wednesday, 13 August 2014

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! 

Monday, 11 August 2014

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!

Monday, 4 August 2014

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! 

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