Recovering

Last Friday I had an operation to fit coils in my lungs to stop a significant bleed. I won't shock you with pictures of the blood I coughed up because it looks slightly horrific and the Hollywood film industry decided a long time ago that any character who coughed up the smallest amount of blood would be dead by the end of the film so now everyone panics. They fitted 4 coils in the end and blocked off a portion of my lung, which is now very painful as the bit of lung is dying away. It's a particularly unwelcome pain as it hurts to breathe and I feel like I'm struggling with my breathing now. Partly because of the pain and partly because I feel so weak and unwell. My lungs take a long time to heal when they have been ventilated during surgery but I don't know how much of it is my body struggling to cope without the bit of lung that is now dying. The pain should pass, but whether I get all of my lung function back we'll just have to see. 

I feel like I've struggled a lot this time, even though in reality it was much better than my last general anaesthetic surgery and there was really brilliant care in the Intensive Care Unit but somehow I feel a little defeated. I think this was just one surgery too many for me this year. Five in a year is just ridiculous. I've probably spent over 3 months in hospital altogether this year and I'm getting tired of it. How much more bad luck does life want to throw at me? 

I always find the aftermath harder than the surgery itself. Coming out of hospital, although amazing and long awaited, makes me feel insecure and unsafe. It's a huge change and even though it's a good change, it unsettles me. I don't think I can really explain how I feel. I suppose it's normal to want to bury yourself away when things are going wrong and I think that's what I'm feeling. It's hard for others to understand when they can see you visibly improving. It's like your physical health and your mental health go in opposite directions. When you're too ill to think it's all so easy to cope with but the better you feel physically the more your brain realises how awful it all was and starts eating away at you. I am improving. The pain is much better and although everything feels so difficult, I am managing to walk and slowly climb the stairs and wash myself. It's only been a week, of course I don't feel back to myself yet. I'm doing really well, I just have to keep telling myself that. 

I guess you could say I feel a bit down. But I'm cheering myself up with the prospect of Christmas. Keeping busy is the best thing to do I think. I don't usually blog until this horrible feeling down phase has past because I feel under pressure to be as strong as people think I am but I really want to put this week behind me as soon as possible. It's time to cheer up and stick on some Christmas songs and movies. It's the most wonderful time of the year, after all. 

Here We Go Again!

Yes, I'm back in hospital! And waiting for an operation on Friday (tomorrow). I know, I'm about as unlucky as they come! It's been about 5 weeks since my last procedure. This will be my 5th operation this year and 18th in my lifetime. Certainly getting my moneys worth out of the NHS anyway.

Last Thursday I started to cough up quite a lot of blood. About 25mls every 4-6 hours. By Saturday it was getting worse so I was admitted to hospital for lots of tests. Now they've looked at my CT scan (where pictures are taken of radioactive contrast in the bloodstream) and they can see a bleed in the middle of my right lung. They're not happy to leave it and I know from experience that these things rarely go away by themselves when it's my body. Last time I had this it just kept coming back until they fixed it. So I'm booked in for Friday to have coils placed in the bleeding branches of my lungs, which will hopefully seal them off. They don't really know how many they're putting in yet. They're just going to see what they find.

It's not a particularly huge operation but because it's me they're going to have me under general anaesthetic and they have a bed booked in intensive care for when I come out. It's going to be a long operation I think, because it's really fiddly. I'm going down really early in the morning and they're hoping to have me asleep by 9am so I think they're anticipating a long one. I am usually pretty rubbish at recovering from general anaesthetic and it tends to be worse the longer the procedure. My body doesn't like starting up again when it's been effectively shut down by the anaesthetic. It takes a good few hours for me to gather the energy to open my eyes and then it's a slow process of recovery. I'm stable in medical terms but it just doesn't feel very nice. But I'll be out of action for a while.

Now this messes up my blogging plans a bit because I have a lovely Christmas series planned! I think what I'm going to do is set up the posts to publish themselves automatically for the first few days as I will most likely be too ill to deal with it. I've had the foresight to write some in advance as I have a lot of hospital appointments this month and I was worried I'd be too busy to write all the posts I'd had planned. I'll have to write like mad now to get them all done but it's not like I don't have the time on my hands. So remember to check back on the 1st and 3rd of December for the first of these as I may not be able to update you from my Facebook page when these go up but as soon as I'm able to I'll make sure I remind you all.

Have a lovely weekend, do some Black Friday shopping and get ready for the festivities!

How to Survive in Hospital

After my recent four week stay in hospital I thought I'd share some tips on how to survive in hospital. 

1. The first huge thing is to get yourself a pair of earplugs and possibly a sleep mask and keep them in your handbag so if you're admitted in an emergency you know you have the tools to create quietness and darkness. I've stayed awake all night before now. 

2. Bring some home comforts. I'd suggest you bring your own pillows as you'll only be given one in hospital and they aren't the comfiest things. Small ones are good after surgery to prop yourself up into a good position that keeps the weight off any sore spots. I usually use a teddy bear under my arm to make my pacemaker site more comfy as they're softer, nicer and designed to be hugged! 

3. Bring your creams. It might seem like a strange luxury for hospital but I find my skin gets very dry and my elbows particularly get dry and sore from the stiff, starched sheets. It really feels good to put on some nice face cream, some good scented body creams and a good heavy duty dry skin cream for those extra dry bits (try a cream designed for ecsema or dermatis, although nothing medicated as they will lock it away if they see it.)

4. Find a bath and throw your bubble bath straight in. I find baths so much easier for keeping chest wounds/cannulas dry. Run it shallow if you're worried and relax. Get all the sticky residue from plasters and ecg stickers off and you'll feel so much more human. I brought in Lush bath bombs and came out smelling of flowers. It really makes a difference when you have to stay in for such a long time. 

5. Don't be afraid to ask for things. Ask to go down to the hospital Cafe for an hour or even outside if you feel up to it. If you're uncomfortable ask for a different mattress or for a cannula to be moved into a more comfortable place. Usually, nurses are only too happy to help. 

6. Load a tablet with stuff to watch/listen to/play. Most hospitals have free wifi. If that's the case, I recommend subscribing to Netflix or LoveFilm even if it's just for the time you're in hospital. Sign up to Spotify or an equivalent to listen to music or find a radio app. Download catch up service apps for the channels you watch most. If you don't have Internet then you can always buy films to keep on your tablet. Check any DVDs you own as some come with a digital copy, which you can download onto your laptop or tablet without having to repurchase. Find a mixture of games that use Internet and simple games you can play without as some parts of the hospital where you may be waiting for tests might have poor or no connection. Just don't forget to pack your chargers and go over your settings so that your device's battery is not being drained by anything running in the background. 

Some other essentials! 

A variety pack or a box of your favourite cereal makes breakfast a bit more interesting. A little squash bottle is super handy to jazz up your water, which isn't the tastiest or coldest tap water! Lip balm is a must, a like a nice smelly one you can put on your oxygen masks or tubing to mask the smell of plastic. If you're set on doing your own meds a useful tactic is to use pill boxes so the doctors don't have any choice other than to let you do them yourself because none of the nurses will know which drug is which. You come across super organised too and they know you know what you're doing so they'll be much more likely to be happy with the arrangement. 

I think that's all the tips I have, I hope some of these might be useful if you have to go to hospital for any reason. (Although I hope you don't!) 

Thanks for reading, updates coming soon but I'm enjoying being home! 

I'm home!

You'll probably notice that I've been a bit quiet and I hope you've not been worried. The main reason for this is that every time I thought to myself, I'll start writing my blog post about this, a doctor would saunter in to my room and completely change the plan. Even I was pretty confused about what was happening by the end of it so I thought I'd just wait until after it was all over and explain it to you then!

Yes! I'm home and reasonably recovered from a second lot of surgery. A week after my pacemaker came out, my surgeon became worried that the bit of pacing lead he ended up leaving in because he couldn't fish it out may have become an infection risk. He decided he needed to have a last stab at getting it out. Unfortunately my body decided that wasn't going to happen and I began spontaneously coughing up blood just as my surgeon came with the consent forms. My pressures are so high in my lungs that random blood vessels have a habit of bursting. Small vessels heal up on their own but bigger ones need surgery. I've already had this surgery once and was really upset that it was happening again. They hoped to get me into surgery the next day, which was a Friday, but the team was too tired and they thought it was a risk starting at 5 0'clock in the afternoon. So then we had to wait for the weekend to pass and then nothing happens on a Monday in hospitals so it was Tuesday by the time we had another plan to do it. 

Tuesday at 9am I was on the table, strangely calm, waiting for all the iodine on my neck and chest to dry. Yes, I was awake! Thank god it was such a better experience than I'd had before with local anaesthetic. It went exactly how it was supposed to. Why I wasn't given any kind of calming drugs for my previous surgeries I will never understand. I was actually asleep for most of this operation, which was a good thing as they worked at it for three hours. They had a catheter (long tubing) in my neck, flowing through the heart and up into the artery where the lead was lodged. I could see the x-ray film on the screens as they tried to grasp the two inch length of lead but it was just too embedded in scar tissue that they couldn't even get a hold of it. Thanks to the heavy drugs and the lovely technician holding my hand and to my surgeon who talked me through the operation it was no more trauma than a long nap and a bee sting, which was all I felt as the anaesthetic went in. Admittedly waking up with the time 12:40pm on the machines made be a little concerned at what was taking so long but I'd barely opened my eyes and the technician was there telling me everything was okay, they couldn't get it and that they were stopping now. 

I went to recovery, scoffed five custard creams and a cup of tea with mum who was very worried that I'd had another awful time as I'd been in there a total of nearly four hours including prep time. You almost can't believe the patience of a surgeon taking three hours staring at an X-ray and trying to grab this little piece of wire with his little tool. I have a great deal of patience but even I would struggle to concentrate that long on something so dull. 

As soon as I was back on the ward some 20 minutes later, I asked for morphine and slept like a baby for nearly 24 hours surfacing only for toast and tea and morphine. Unfortunately, the bright spark who wrote up my morphine wrote me up for 5mls, an adult dose when I'm clearing the weight of a 12 year old, not to mention already dosed up on stuff from the operation so it took a long time for me to stop feeling drowsy. But as soon as I did feel better, on Thursday, they sent me home! (After 7 hours waiting for pharmacy to print a label!!!)

So I'm home now and well and truly worn out! Going to bed at seven, asleep by nine and sleeping through till seven or eight in the morning. I'm working hard on getting the calories again after a lot of nil by mouth days in hospital while they couldn't decide when they were doing this surgery. I'm no longer coughing up blood, I'm finishing my antibiotics today and my heart is working well without a pacemaker. And I want all of that to stay that way, thank you very much! 

It's been a long month in hospital and I'm so happy to be home. But I thought it'd be a lot closer to Christmas by the time I was home so now I'm home and it's not Christmas I'm a little disappointed. I won't be wishing my time away though. Winter is my favourite time of year and I'm going to enjoy the leaves falling, Halloween and cosy nights in on the sofa.

Pacemaker Problems!

This update is a little late but I've been in hospital, dealing with all the news and not quite feeling up to writing about it. Today, I'm feeling better and have had plenty of time to get my head round everything.

So with my usual display of bad luck the healing of my new pacemaker was pretty slow and rubbish. I wasn't too worried at first but then a blood blister began forming over the scar and in fear of it popping and causing an infection I went along to hospital and they admitted me. They were too scared to do anything at first and left the blister to pop, which opened up my scar and made it really hard to keep bacteria out. It was covered up for a few days while I waited for my surgeon to see it and when he did he found a deep hole and actually caught a glimpse of my pacemaker through the wound. Not good! So the pacemaker needed to come out. My body was rejecting it and physically trying to push it out of my body. (Yes, ouch!). It took him a while to decide what to do because putting a new pacemaker in would just cause another infection and because I have a central line of the other side of my chest we were in a bit of a pickle. The first surgery was cancelled as usual and I ended having it done on Friday, over a week after I'd been admitted. 

He took the old pacemaker out and all the leads. Unfortunately the leads broke as he was getting them out and as my anatomy is quite strange they couldn't get it out. My surgeon had to call another surgeon for a chat and they decided it was safer to leave it in as it's inside an artery. The surgery took about 5 hours in total and I was quite unwell when I woke up as my lungs were very unhappy with being ventilated so long. My oxygen levels are only just getting up to 70% after a few days of struggling to hit 55%. My body is full of fluid and I'm achy and sore but slowly improving. Good news! I might not need another pacemaker as my heart seems to be working fine without it. I'm so pleased as I was really unhappy with going through more surgery because I just don't feel strong enough and it's just going to make the transplant less likely to be completely successful. I'm too ill for this stuff now. And putting in a new pacemaker would mean an extra surgery to move my line also. If they do find my heart is getting a bit tired they'll wait as long as possible for a good recovery before they do it. But fingers crossed!

I've been practically bed bound for four days but I'm getting better now and able to move around a little. I think I'm on the mend now. But I can't tell you how strange it feels to not have a lump of metal in my chest! I've had my pacemaker since I was 3 and it does feel like I'm missing something. But I'm definitely happy not having it back and enjoying having a nice flat chest. Very grateful to my surgeon for doing such a neat and careful job, so much so that I have very minimal bruising and pain. 

I'll be in hospital for the next week to 10 days having super strength antibiotics to blast away the infection, getting a little more active as well as keeping an eye on my heart to make sure it doesn't do anything funny. I should be back to regular blogging soon! 

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! 

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!

Things That Made Me Happy This Week

I thought I'd make this a regular post because they're fun to write and it's always nice to think about all the good things that are happening rather than the bad.

1. Eating

Yes! I'm finally getting hungry again. I'm fancying lots of nice things and eating much more by snacking and having bigger portion sizes. Whereas before I'd really struggle to think of anything I wanted to eat, I'm eating pretty much anything that someone wants to cook me now. I've been out for a meal a few times and eaten a full starter as well as nibbling on everyone else's food too! I loved food so much before I had my liver and tummy swelling problems, so I'm really happy that I can enjoy eating again and should make putting on weight a thousand times easier. 

2. Clinic Day

So going to hospital isn't usually a reason to feel happy but my doctors were really pleased with me and reckon I look a lot healthier and happier than when they last saw me two months ago. I hadn't really noticed a change but now I think about it I think I do have more energy now, or at least I feel less lethargic and lazy. They're really hopeful that the new drug might be working already as I look so much better and it might be why my appetite is getting better too. They said flolan usually makes people feel sick so the fact that it's doing the opposite is brilliant. They took the stitches out of my line, which didn't hurt at all so that's awesome and it looks like it's healing up really well. I also attempted the 6 minute walk test so that if my meds start working both me and my doctors will be able to see just how much it's helped. I barely managed 30 seconds but it was much better than I thought it was going to be. I obviously would avoid that kind of exercise outside hospital as it feels awful and it isn't really safe for me to push myself physically with my heart and lungs struggling so much. The fact that I managed not to feel like I was about to die is a success in my book! 

3. Awards

I won an award! My creative writing course at university gives out a number of awards each year and this year I won the Short Story Award! I don't think I've ever won anything individually before. I've had dance medals and things but they were the kind of prizes everyone got, and I always got one of those certificates they give everyone at the end of the year. (Most Outstanding Student of The Year award, thank you very much secondary school!). But I've never won a proper award where I beat other people to get it. It's funny that I won it considering my short story module was the only module I managed to finish and therefore pass this year. Makes up for the fact that I didn't get to finish my second year. I might not have ngot a final grade but I got a nice little award. 

4. Weekend Celebrations

It was my stepdad's birthday this weekend so we had a lovely garden party with all of his family. It was a really good day even though I was pretty tired and struggling with the heat. I had to lie down inside quite a but but I still managed to play a game of croquet, (probably the only sport I can play now!) which was fun and the food was great and it was just nice to see everyone enjoying themselves. The weather was really nice too so it was a really nice calm day, just chatting and chilling out. It was a bit hot for me but I managed not to come out in a rash thanks to a new sun cream I've found! If you ever have trouble with heat rash try neutrogena's ultimate sport, which is an aerosol can of factor 100 plus sun cream. You can only get it off amazon shipped from America but it's worth it to not itch for days after sun exposure. I'm sure I would definitely have got my usual rash if I wasn't wearing it as the next day I went outside and sat in the shade for half an hour and came out in a pretty big rash over my arms even though I wasn't in direct sunlight. To be able to spend more than five minutes in daylight without coming out in a rash will make the summer a lot more comfortable. All in all a pretty good weekend and there's still lots of nice cake left over to stuff my face with over the course of the week. Result! 

5. Healing Powers

My line is all healed up now and feeling good! It took a while to stop hurting when I laid on my left side, and when I reached for something with my left hand but it doesn't hurt at all now, even when I give it a good clean and change the dressings. The wound at my neck just looks like a freckle now. I can feel a bit of hard scar tissue under the skin but it's not painful. I'm also happy to say that I'm so far not coming out in a rash from the dressings. I usually get itchy when I have heart monitor stickers on too long so I thought I might have trouble with the dressings but they're actually pretty comfortable. When they get wet they're a bit rubbish at staying on so I'm making a bit more of an effort to keep it dry and that seems to be working well. 

Nice, clean and tidy wound! The patch is an infection precaution, I'm not sure how it works but it's supposed to reduce bacteria around the line. Makes it look a bit less disturbing too! 

6. Wimbledon!

Yes, Wimbledon has started and I finally have something I can just stick on and relax to. Evening tv is rubbish at the moment so I'm really low on things to watch on catch up, and with the World Cup on most of the quiz shows I usually stick on aren't running. I do really enjoy Wimbledon and it feels like summer has started now it's on. It's quite rare to have a sport where the women's is televised just as much as the men's. I actually prefer watching the women's tennis because the matches are usually under two hours whereas the men's can start to drag on over four or five hours especially when we get to the tougher matches. I'm not sure who I'm backing to win yet. I think it'll be good to see the good old Serena vs Venus Williams final in the women's but we'll see what happens. I feel sorry for people who don't like the football, tennis or cricket at the moment though. There is literally nothing else on tv at the moment.

7. The Bake-Off Advert

Have you seen the advert for the new series of The Great British Bake-Off yet? It is pure genius! Mary Berry cartwheeling across the bake-off lawn is the best thing I've seen on tv all year. Seriously, tv producers, you need to get some good stuff on! I don't think the bake-off actually starts for a while yet but I'm really looking forward to it, as well as strictly, a bit of I'm a celebrity and a new James Corden creation would be brilliant. I really enjoyed The Wrong Mans last year, which was on straight after the Bake-Off. Good tv please come back soon! Anyway here's the Bake-Off Advert if you haven't seen it. http://youtu.be/FMbr-xFMjFo

I hope someone or something made you especially happy this week! Thanks for reading! 

Hammersmith Hospital

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

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

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

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

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

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

Thanks for reading! 

Weight loss, hospital and upcoming excitement!

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

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

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

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

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

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

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

Palliative Care Again

So I had an appointment with my palliative care doctor today to try and get some good pain killers for my chest pain. She didn't really know what the chest pain was but agreed that it was probably my pulmonary hypertension. Whether it's the effect if the pressures in my lungs or the effect of my lungs having to work harder. She did say it could be the iloprost but I'm not sure because the pain doesn't seem to get worse after I take it. She said it could be something to do with the stomach also because the pain is right at the bottom of my lungs so it could be something else. You have to be careful not to get fixated on the lung disease and just assume it's the lungs. I've had problems with my abdominal organs before now. 

She didn't get any tests done because I'm going up to Bristol early November and it's best not to have too many x-rays if you can avoid it. They aren't dangerous really, but when you've had at least two a year for the whole of your life, the radiation starts to mount up a bit. There's no point having one in Gloucester for them to do new ones in Bristol in less than three weeks. 

Anyway, she offered me a man made version of the oramorph, which tends to give people less side effects than the conventional form. I haven't tried it yet cause I have to drive back to Bath this afternoon and I don't want to risk it making me feel too drowsy to drive. There are lots of options if that doesn't work. It's just a case of finding the right painkiller for me. I'm glad I'm starting to get sorted on the pain killer front because I feel like my chest has got worse in the last few days. I'm hoping this new morphine is going to work. I'm falling a bit behind on my uni work. I think I'll have to spend tomorrow sending apology emails to all my tutors as I've missed a whole week of lectures now and I haven't recuperated at all. My palliative care doctor couldn't really help me on that apart from making sure I get a good night's sleep. Trouble is my pacemaker isn't very good at slowing my heart rate down enough to sleep. She said that was normal though so at least I feel less weird now. I've hallucinated whenever I've tried sleeping tablets so I'll just have to stick to camomile tea. 

I'll keep you posted on whether the new morphine does the trick.

Thanks for reading :) 

Visit to Palliative Care

So before you all start freaking out that I'm dying let me just explain. Palliative care is not something that is just available to those who are getting to the end. Similarly morphine, which I am taking, is not solely used for those waiting to die. Palliative care is probably best known for their amazing work for people who are dying, including making them comfortable and allowing them to stay at home with the help of nurses. This is not what they do for the majority of their time. They are a service, which is better informed and organised than a gp, which concentrates on managing the symptoms of people with chronic illnesses or diseases. They also act as a support for those dealing with life threatening illnesses and diseases, something that gp surgeries are not equipped to deal with.

The reason I was referred to the palliative care team was to help manage my pain. As I've mentioned before, I've been having quite a lot of chest pain for the last couple of months. As for the cause, no one seems sure. There's quite a few possibilities but there aren't many ways they can prove any of their theories. So I probably won't ever know what's causing it. Perhaps how it reacts to certain painkillers might rule a few things out but as to a definite answer - I don't think I'm ever going to get one.

I think the trip to palliative care today was really useful. The woman I saw seemed to be really well educated about my condition. Which is really unusual, considering how rare my conditions are. She sounded like she had read my notes pretty well. She had a lot of ideas about the pain. She said it could be an inflammation on my sternum, which I had broken twice so that my surgeons could access my heart for my open heart surgeries. She said things like that take a long time to heal because there's no way of putting a brace or strapping up my chest to allow the bones to heal after they've been broken so things like inflammation and healing problems are common apparently. So that could be a reason. She thought it might be iloprost playing a part as well because she said the infusion tends to be painful so it could be that. I did have the same kind of pain in January before I started it, but I guess this could be a different pain that just feels really similar. So in the last few days I've gone from my actual specialist doctor having no clue at all, to a specialist nurse and a random doctor I've never met before coming up with loads of reasonable ideas and, more importantly, solutions to the actual pain, which is stopping me going out and doing what I want to do. 

The plan is to have a look at some recent x-rays to look for inflammation in my broken sternum, and to check out my kidney function from a recent blood test just to check they're doing okay before I start putting more chemicals into my body and to try and find out what the best kind of painkiller will be for me. The only choice really is different forms of morphine that are slow release so I can have some background pain relief and something doesn't make me feel too calm or strange so I can still drive and keep up with everything that's being said in my lectures. Oramorph, which is what I'm on now, acts fast but stops working quite quickly so for a constant it's not brilliant. When I'm on the other morphine I can still take this as a top up when it's really bad. I don't feel I suffer much with the side effects of morphine but they do make me feel a little spaced out when I take a lot, which is fine if I've got nothing to do but if I need to drive or concentrate on work, it's not ideal. 

She put my mind at rest quite a lot about taking morphine all the time, the slow release form and my oramorph. She said it was virtually impossible to become addicted to it when taking it for pain relief. It's when you take it when you're not in any pain that it effects different receptors in the brain and causes addiction. And she said that for me personally it's probably the safest thing I can take, aside from paracetamol, which doesn't help the pain at all. Mainly because of all the medication I'm on is effected by taking things like ibuprofen but is perfectly safe with morphine. Even though we think of ibuprofen as being a quite safe over-the-counter drug, for me it's much more dangerous than taking morphine, which she said isn't really dangerous but has to monitored well because of the implications of taking it when you're not in pain. 

I think people get quite freaked out by the thought of morphine because of the stigma of death and addiction attached to it. I mean, it's a class A drug after all. But I don't think it's really this amazing, dangerous pain relief that some people think it is. It's sounds like quite an extreme form of pain relief, and the fact that's it's not actually relieving my pain might sound pretty strange to you but it isn't an all round great pain reliever. There are a lot of different forms, it's not all the same as what they give people when they're dying. And they probably give those people a higher dose than you could function on outside hospital. So morphine is a the most sensible drug for me to take and like palliative care, it's got a bit of a bad reputation. 

I'm really glad that I said I was a bit nervous about takinb morphine because of what people think about it, but she really put my mind at rest on that one. We also talked about anti-sickness drugs because whenever I'm ill I get insanely sick. I've never found an anti-sickness that works for me, my body just doesn't like them at all, even the ones they use on cancer patients going through chemo, but it's nice to know that if/when sickness becomes more of a problem we can have a look at trying some more out and seeing if there is just one that my body can handle.

I'm really happy with today. Even though I didn't actually get any more pain relief, but after my trip to Swansea next week it should all be sorted and at least I won't be at uni all the time so I can pick up new drugs and visit the palliative care team whenever I need to without having to arrange a trip home. 

So this turned out to be a long post. Hopefully knowing more about palliative care and morphine might come in useful at some point in your life.

Thanks for reading and happy Wimbledon season! (yes, I'm a tennis fan) 

Hospital visits

It's been quite an eventful two days! I've had lots of trouble with the contraception I'm using, and I ended up phoning out of hours and dashing off to the hospital at 11:00 last night (if you don't have out of hours in your country it's where you go when it's not a big emergency but you need to be checked out and the doctors are closed). They didn't want to give me anything to help because they didn't know if it messed with my PH or any of my medication. I was bleeding so much it was ridiculous. So it was a bit of a waste of time but at least it put my mind at rest a bit as she said the amount of blood I was loosing wasn't harming me because my blood pressure and heart rate would be all over the place but she wanted me to have blood tests done today. But as luck would have it, I had an appointment with my PH doctors today so I just got them to do the bloods. They weren't that helpful either with the whole bleeding and tummy pain problems. They just said to wait and see what happens.

Anyway they did kind of sort out my chest pain. A nurse from Hammersmith Hospital in London was there, which I was really happy about because I know she's really good. She was the one who suggested morphine for my chest pain when all the doctors were doing was dithering about and saying they didn't know what was causing it. When obviously the pain was the thing that was getting in the way of my life and they'd done all the tests they could do so they knew it wasn't anything major. But anyway, she said it was quite common to get chest pain with PH (why my doctor didn't think of that I don't know!). She said it could be my heart getting bigger from all the pressure and strain it's under and that could be stretching the outer layer of muscle around the heart and causing pain. Or she said it could be an inflammation in the lungs due to the pressure in the lungs. But neither are really bad, it just the PH having an effect on them, it doesn't mean it's getting worse or anything. 

They've increased my iloprost dose again but they don't actually do the medication in a big enough dose so I have to put my new dose and my lower old dose together. So I have to nebulise twice every two and a half hours now, which is a pain but it's worth a try. 

I completely failed my walk test. I hardly did 100yards and I felt so out of breath and the nurses had a panic because my heart rate was so high. But I felt fine after a lie down. Hopefully my breathing and stuff might get better on the higher dose of iloprost. 

I had a pacing check too and they said there plenty of battery left but it's quite difficult to say how fast it'll run out because the amount my heart needs it varies quite a lot. But it sounds like it'll be at least a year so hopefully I can get it done in the summer holiday so I don't miss any uni. 

I'm feeling so tired tonight and my chest is really bad from lack of sleep and that walk test, which my chest was really not a fan of at all. Think it's time for me to get some sleep. I'm off to yet another hospital appointment tomorrow just to check my hearing then I'm going to see my dad so it should be a nice evening. The hearing test isn't till 4 so I can have a nice long lie in.

Night all.

Thanks for reading 

Hospital visit

Well, I said I didn't expect them to come up with anything and they didn't. They have absolutely no idea why I am in so much pain. They just kept saying, "well, we know it's not the heart, that's good" but that doesnt help me. I'm still in pain and to be honest I didn't think it was my heart to begin with. I knew how this appointment was going to go, but I still wasn't really prepared for them to shrug their shoulders and start coming up with weird ideas. They're sending me to someone else because they reckon it could be heartburn. I've never had this but I'm sure for one it wouldn't continue solidly for 3 weeks and secondly be a 9 on the pain scale.

It is very frustrating not knowing what it is. I'm used to it, but that never really makes it easier to deal with, just easier to put out of your mind when you want to.

I'm really not keen on staying on morphine for a long time either, because I'm sure that's not good for you, but I don't want to be in pain either. It doesn't really get rid of the pain but it takes the edge off and stops you getting restless and unable to find a comfortable position. It's a highly addictive class A drug, which sort of scares me a little. But my doctors don't seem too worried about it. I know I'm not addicted because I often forget to take my next dose and only remember when the pain starts getting really bad.  But it's still a bit scary. I hate the idea of being dependant on something. Even though I'm practically dependant on all my drugs, it's just not a mental dependancy.

So I'm going to be in pain for a while. Good job my uni is done for this year. Except for two assignments I missed due to illness earlier in the year, but they're not due for a while I think. They're both essay type things, so I can whip them out quickly compared having to give in a story, which takes a bit more careful planning. That sounds a bit backwards but I'm a bit backwards myself.

Just got to hope the pain eases a bit in the next couple of weeks.

Thanks for reading!

My sexy oxygen tubes and one poorly chest :(

Preparing for hospital appointments

So, I have an emergency appointment tomorrow at the Bristol Heart Institute, to see my doctor about my chest pain. Which is pretty painful, if I'm honest. I've rated it a 9 out of 10, second only to a pulmonary embolism I had 4 years ago which was without a doubt the most painful thing I've ever experienced. I've had this pain for 2 weeks now, though it has not always been at a 9. The first time I had this pain, back in January, I rushed off to hospital, stayed over a week, caught a sickness bug and was still none the wiser on what the pain was. So this time I'm just going calmly to my doctor and see what he thinks.

I'm currently packing a little bag in case I end up staying over night. I don't think I'll have to stay in, but in case they find something majorly wrong, I'd like to have some entertainment and earplugs with me because hospitals are extremely boring and very noisey. I don't particularly want to be stuck there without any home comforts. 

So this is a small list of things I'm going to bring with me. These are essentials and I'd pack a lot more if I knew I was staying in. I'll probably do a proper "What I take to hospital" post next time I'm admitted, which probably won't be too long to wait.

So here's the list:

Drugs (which are not the kind of things hospital stock up with)

PJs

Leggings (nice and comfy for lying in bed, and to avoid contact with those horrible stiff, scratchy sheets they have)

A change of clothes

Deodorant 

Phone and iPad charger

iPad

iPod (yes I am completely in love with Apple)

Paracetamol (naughty, but they act like it's a class A substance in hospitals, you ask a nurse for some and it never turns up!)

Toothbrush and toothpaste

Ear plugs

Sleep mask (because hospitals don't know that light switches go the other way, and that curtains probably should get fixed if all the hooks are broken)

Note book and pen

Spare headphones

...and

Dry shampoo!

That's pretty much all I need to survive one night in hospital. That and food! Because I cannot stand hospital food at all. I eat as little as I possibly can and make all my visitors bring gifts of food!      

Hope this was interesting :)

Have a lovely day!

Sara