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! 

Clinic Day

Yesterday I went to my Pulmonary Hypertension clinic and they were all really happy with me. I've been feeling good on the new medication, Flolan, and now my pacemaker is running at full power I'm feeling a lot more awake. 

We talked about my hair falling out and they suggested some multi-vitamins might help. They said it's actually normal for hair to continue to fall out after you start feeling better from a long period of illness. It takes a while for your hair to catch up. However, it might be the cocktail of drugs I'm on too. None of them really have hair loss as a side effect but together they could be having that effect. So it might go away, it might not. We'll just have to wait and see.

I've been feeling really tired and getting muscle aches when I put up my flolan dose and as I've been doing it every other day for the last week, that's been making me feel really rubbish. But we chatted about that and it's normal. Flolan can make you feel like you're coming down with the flu when the dose is put up. No idea why a drug that opens up the blood vessels does that but it is pretty strong stuff. Now I know it's definitely that I can be a bit more clever about when I decide to up my dose. I want to aim for once a week but I can work around times I know I'm going to be busy and need a bit more energy than normal and make sure I've got at least the next day to rest once I put it up.

The day before my Flolan pump's battery had completely died without notice. It's supposed to start telling you it's low way in advance because you have to make a new batch of drug, which take 20 minutes to make up, as the pump resets when you replace the battery and it won't just pick up where it left off. Unfortunately we were in a shopping centre and we started hearing this high pitched ringing noise and we were convinced it was the shopping centre's lights or tanoy system going mad and we were wondering around for half an hour until we got back to the car, shut the door and could still hear it. I checked my pump and flat battery warning was up and it had stopped infusing. I was off the drug for about an hour, maybe a bit longer, which is pretty dangerous so they told me in clinic to send the pump back to get it checked out because it should have given me warning, not just completely died without notice. 

They checked out my pacemaker site and although they were a bit shocked at first at the amount it's swollen they said it wasn't infected and the swelling would go down but it would probably take a good few months. But I was a bit worried that the swelling would just never go down so I was happy to be told it would eventually. My specialist nurse has a pacemaker so her saying that was very promising. 

After that we went for our usual nice lunch and overall had a nice day. I've got Papworth next week so hopefully they'll be pleased with me too. Everything seems to be going okay at the moment. Hopefully it'll continue. 

Bravery

I never know quite what to say when people say "oh you're so brave!" It usually follows something like "I couldn't have done that" or "well done for getting through it." What does that mean? Congratulations, you have not spontaneously combusted from fear during your experience. Surely that's the minimum requirement for getting through surgery - that you get through it. Time passes, no matter how much distress you're in and from my point of view all I did was let time pass. 

I know I'm not alone here. Most people with chronic illnesses or people who have gone through a huge trauma feel confused by the term. It can tend to feel like people have set a standard of emotional wellbeing that you then have to try to maintain. You can't cry all over someone when they've just told you how brave you are. Like most people in my position, I don't feel brave. This is normal for me, and I don't have a choice. If you're a fireman and you find that the stress of the job is too much, you can quit. But I can't choose to stop being ill. Sure, I can punch my surgeon in the face and walk out and refuse to come back but I will either bleed to death if he's already started or once my pacemaker stops working, die from heart failure. So really, I don't have a choice. In the moment, it really does feel like you're just existing so I don't see why a phrase like "you got through it" is supposed to be a compliment. You don't die just because something is awful. 

Okay so I probably sound like I'm being grumpy and not appreciating a simple word of kindness but not at all. I understand that people are being kind and I feel like my whole thought process on this subject has helped me to feel less awkward and confused when someone says "you're so brave". The thing is, that's not actually what they're saying. They're not trying to evaluate how well you've coped with the trauma. What they're really saying is that they understand and empathise with the awfulness of what you've been through and they want to assure you that you're doing well and even if you're not, that's okay because actually that experience was really awful. 

So my conclusion is this. To well wishers, be aware that people who've suffered a trauma may feel a sense of pressure to be mentally okay when you tell them that they're brave. It can feel like you're setting a standard or trying to avoid any situation where they're telling you how upset they are. But to those who've been through a trauma, try not to over think this. They're trying to be nice. They're trying to let you know that you're doing well and that they understand the awfulness of what you've been through. And understanding and empathy is something you always need, however much you might hate to be pitied, don't block people out. Of course they're concerned and they want to feel like they're helping a little bit. Try to think of it as a small act of empathy and you'll feel a lot more comfortable with being called brave. 

I'm not one of those people who hate to be pitied. Because I don't hear pity, I hear empathy and empathy is one of the best things about being human. Take it as a small piece of kindness. Don't let illness or trauma turn you into someone who gets offended by every little bit of kindness someone tries to show you. No, they don't understand what it's like to be you, but they're trying and that means everything. 

Holiday!

I went on my little holiday/vacation last week to the seaside town of Weston-super-Mare. We were really lucky with the weather. As I come out in a rash in the heat, I was happy it wasn't too hot, it was perfect for being all out day for me. We spent a lot of time outside! We had a beach day and visited the pier, went to the aquarium and had a look at the sand sculptures, which were really amazing.

How they manage to make these out if ordinary sand I have no idea! But they were all brilliant.

We went to the theatre while we were there and saw a really good play called 'Double Death', which was a bit of a crime mystery. It was really clever and I liked how all the objects from the game Cluedo were props on stage. The dagger, the candlestick, the rope and the others were littered around the stage. It was really clever and reminded me a bit of the Agatha Christie stories. 

We had a day at Noah's Ark Zoo Farm in Clevedon, which was a kind of cross between a zoo and a farm. You could feed the chickens and the goats and hold rabbits and gineapigs (which made me really miss my little rabbit! I miss having live things to cuddle!) but they had lions and tigers, monkeys, zebras, giraffes and two new elephants, one of which had only arrived the day before. It's such a great idea to have them together because although zoos are great it's frustrating, especially for children, that you can't get right up close or touch any of the wild animals. There were groups of nurses and patients from old peoples' homes and lots of disabled children so I think it must be well known as a good place for wheelchairs. There wasn't anywhere we couldn't get to, which sadly is a rare occurrence at places like this! The restaurant was terrible but we had plans to go out for an evening meal anyway so we didn't want to fill ourselves up. 

On the way home we stopped in Bristol and had a shopping day. I popped into H&M for a basic cardigan as it's getting colder and my pacemaker is still sore so getting jumpers on is a bit of a struggle. I also got some bath bombs from Lush to save for a rainy, cold day. We had a great meal in TGI Fridays, which is an American themed restaurant, for those who don't know, so unlike the grumpy old British the waitors there are really lively and friendly. We had a lovely Italian waitor who was practically bouncing off the walls with enthusiasm and we really liked that. They do tapas in there now, which is perfect for me as I don't eat much but I still get to try lots of different things. 

In other news my pacemaker is still hurting. I got the stitches out last Monday on the way to Weston and the actual wound has healed really well but it's still really swollen and sore over the actual area of the pacemaker. Apparently it's, not exactly normal, but nothing to worry about. It'll go down eventually but it's going take a long time unfortunately. My chest is still bruised and isn't fading much either but it'll heal one day! I'm glad the wound is okay anyway. That's the bit that could get infected so it's important that that heals quickly so I don't get any nasty bacteria in there. It's definitely getting less painful and that's the main thing. It's just hard to remember not to move it too much now as it's only very painful when I move too much or over-stretch it. The thing I'm finding annoying is I seem to spend a lot of my time changing dressings because I have my line and then I have my pacemaker wound too. I don't think it's quite ready to go without a dressing yet but I can probably be less careful about being sterile soon. The stress of not being able to scratch your face for twenty minutes is not fun! 

This week I'm looking forward to the Invictus Games, which is a kind of Paralympic Games but only including injured armed forces. It'll be great to see those suffering from mental and invisible illnesses competing alongside amputees, which I think is great because it'll make people understand a bit more about invisible illnesses and injuries. Just because you've got all your limbs doesn't mean you're not disabled. Obviously watching disabled athletes can make your average disabled person feel like they should be achieving more but I'm just glad to see more disabled people on tv. I feel like it might help attitudes and perhaps change the sad truth that disabled people are far more likely to be victims of crime than normal people. This should be televised in all countries taking part so give it a google if you're interested in watching some of it and don't live in the UK. There will be some sports that you won't have seen it heard of before, created specifically for disabled athletes, so it's worth a look. 

I have lots of blog ideas piling up so I'll be back soon! 

To My 16-Year-Old Self

For my 16th birthday my mum bought me a book called 'Dear Me, A Letter to My 16-Year-Old Self', which has lots of letters written by celebrities and popular figures addressing themselves as teenagers. I was recently flicking through it and thought, that'd be a bit of a fun blog post to do and a bit of a different way of tackling the old 'dealing with a chronic illness in your teens' issue. So that's what I'm going to do. Just a bit of background, I was actually at my healthiest at the age of 16 but I still struggled with the prospect of my disease impacting my life in the future. Not being able to dance at some point, not having children, and I really developed my fear of death in these years. I did however have a pulmonary embolism when I was 16 so it wasn't a time free of catastrophe. Hopefully that'll make the majority of this letter make sense to you.

Sara,

Happy Birthday from your 21-year-old self. If you're reading this then your future self must discover magical powers, so be sure to look out for that. Here's the advice. Keep doing what you're doing. Don't be tempted to "fit in". People spend the whole of school trying to fit in and the whole of university trying to define themselves as unique. It turns out you're a few steps ahead everyone else.

Secondly, smile. You always knew the value of a smile. Smile at everyone and anyone. It's been proven it makes you happier and it makes those around you happy too. You don't have to be bubbly, embrace your shyness, but definitely keep smiling. And keep dancing because that will make these years the best years of your life. Enjoy it. Throw yourself into everything at Ribston - moving schools was the best thing you ever did.

Carry on writing that book. It turns out your good at writing (who knew?) but you still need all the practise you can get. Carry on living inside your head, daydreaming and talking to yourself because it feeds your creativity. 

Your feelings on not being able to have children and generally being ill will get easier. You're beginning to realise what's happening to you and it's scary but you'll accept it. Having a chronic illness is enough to make a grown (wo)man cry let alone a teen. Trust me, you're handling it brilliantly. But please, stop googling your disease.  

That horrible feeling you get in your stomach, that's anxiety and it's completely normal. It's the body's way of warning you that something is happening that has hurt you in the past. There's no quick fix here but stop getting anxious about getting anxious and you're halfway to coping with it.

You're right to dislike your doctor, you're not just being a grumpy teen. Don't let him scare or upset you anymore. Focus on all the good things and learn to accept the bad. Think of your disease as a part of you rather than some horrible parasite destroying your life. I'm going to stick in a Harry Potter quote here, "only with acceptance can there be recovery". That's what you have to do, accept all the things that are happening to you because hate and dispair for your illness will destroy you. It might have done a lot of bad but it's done some good too because you wouldn't be who you are without it.

You'll be pleased to know that I have no regrets. Just be happy. If you take no other advice, take this - be happy!

Best wishes, 

Sara x 

If you're interested in this little book I would definitely recommend it. It's a nice thoughtful, funny read and with letters varying from two sentences to pages in length it's great to pick up for a quick read. It was a great 16th Birthday present too! 

I hope you enjoyed this different post. It's not always nice to think about yourself at a tough time in your life but it felt good to write it all down.

Healing

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. 

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.