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. 

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.