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. 

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! 

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.