Reality

I'm pretty sure everyone reaches a point where they feel like they have no choice but to be upfront, honest and real with themselves, and to everyone else. Whatever it is, and whoever you are, there must have been a time in life when you've had to stop the "brave face" and just acknowledge and face a situation.

For me, I think that time is now, or is about to be upon me. I haven't written a personal update post for quite a while, and I think this post will be one of those.

As far as my osteomyelitis goes, the surgery I had in June seems to have worked - or at least stopped any infection from spreading. I still have pain, and it still burns, but it radiates less and the joint is more stable. However, it's gone wrong in a way that I never thought nor expected it would.

Because of the debridement, there was less bone remaining on the right side of the bone than the left side. And because of infection, my wires had to be removed earlier than the time that bone fusion took place (and they were removed sans prior X-ray). Post-wire-removal, the distal fragment has moved, towards the right side, and subsequently fused, leaving the joint at a 30* angle. Now, it needs to be fused again because of the poor result. I won't go much into my surgeon and what exactly happened, but I'm left feeling disappointed and deflated at how things have gone. How many more "last time" surgeries will I have? How many more people will I have to seek out before finding one who can really do this?

I'm hoping that my old surgeons can rescue this, now that the osteomyelitis is at bay. They were unwilling to do the surgery as it wasn't their super-specialty to deal with osteomyelitis. Now, I need a "simple" fusion. It just sucks so much to feel like this. I've dropped my coping mechanisms and am a combination of upset, frustrated and disappointed that I'm in this situation. I'm facing the situation with a real mindset and I can't deny that I feel really rubbish about what's going on, because surgery for me is a big deal because of my bleeding. Not to mention that I'm losing weight again and my GI tract has been giving me real trouble lately.

I hate feeling so down about things, because I'm not that kind of person. I'm sure this is a phase I'll get through, but for now, these are my raw feelings. It's just one of those "why me?" moments, when I feel just a bit more negative than normal.

Fear

For me, and I'm sure for many people with chronic illnesses, fear exists in almost everything that we do, everything we come across. One of the things I've found most difficult to deal with is fear of coping. Not about pain, not about how I feel or what I look like but whether I'll be able to do what I want to do at the end of the day.

I meet lots of old friends, who ask me in passing whether I'll go to university. Most, if not all, are shocked when I say that I've been at uni full time this year, because apparently it seems as if I'm far too ill or far too busy with hospitals to attend.

When I look back, I do wonder how I did it. How I managed to pass with merit, attend all my anatomy sessions, lectures, clinical skill sessions and placements, whilst having at least one hospital "commitment" a week. I'm afraid that I won't be able to pull it off again this year, and that I'll totally buckle under the pressure and everything will fall apart before my eyes.

I also have fear that this is a never-ending journey, a journey I'm taking to an unknown destination and I won't know where I'll end up, or if I'll ever be somewhere I can consider "the end". It's a fear of not knowing, and being afraid of walking through somewhere unfamiliar, towards a place that I won't know about until I get there.

Similarly, it scares me to know that my health and wellbeing is in other people's hands as much as mine. Many people may think otherwise and say that things are in my command and are my responsibility. However, it's hard, when some professionals are overbearing and opinionated, more than I'll ever be able to handle. It's difficult to trust someone to do things right when you're asleep, or when you're medicated so much that you are hardly conscious.

The feeling just before being put to sleep is the hardest to fight and deal with every time. Going through it once makes me never want to face it again, and the more times I have to face it, the more afraid I am. The panic of knowing that there's no turning back, and knowing that there's no more time for questions or reassurances feels horrible. It's commitment like no other; committing to letting someone perform surgery and submitting yourself to whatever might happen while you're asleep. I don't like not knowing who will see me, who will move me and have their hands on me.

Since going into anaphylactic shock twice from platelet transfusions, the prospect of any more transfusions fills me with dread, and indeed with fear. Watching those cells enter my body will never be the same again, and I will never be able to have a transfusion without being paranoid, and without someone with me to make sure everything's alright. For me, bad experiences shape my attitudes as much as positive experiences, if not more.

It is more beneficial than anything else to be reassured by people who can gain your trust. Not necessarily family and friends, but also professionals with that air of calm, who do best at allaying your fears and worry. I've found it to be a fact that fear plays a big part in making illness such a negative experience, and for me, nothing makes it better than sharing it, and letting other people in.

Afterthoughts

It's been a difficult recovery, knowing that I could have gone through so much pain and complications - and that my outcomes are possibly, or likely, to be poor. A huge amount of money and effort went into this operation, but that's only material and is besides the point.

Knowing that being hospitalised this time has made things a lot worse for me, is difficult to deal with, mentally. I know that taking the opioids they gave me has affected my gastrointestinal system more than I thought they would, and that losing even more weight is to my detriment. I'm working hard to gain the lost weight, and have stopped taking the codeine since I realised the effects it was having on me.

In a way, I'm glad that I didn't know how bad things were before the operation, as I know that this would still have been the only option and the only road for us to go down. I suppose I would have still chosen to undergo surgery, but might have been just a little more anxious and nervous, so in a way it's a blessing we never knew. However, it feels so disheartening to learn of the consequences this operation could have on me. If the infection has spread far enough, or is extensively within the soft tissue, there's a fair chance that the surgery not only will fail, but could make everything a whole lot worse. I once had a doctor inform me that it was possible to lose the whole hand to the infection. I've been told that it was always a risk to have any metalwork in an area of recent infection, yet it seemed like this was the best of all options for me.

I feel very shaken and still am upset about the experience I had with my platelet transfusion. This is the second time I've gone into anaphylactic shock, and the feeling is awful. Both times have been a result of IV agents, making the onset very quick, and the effects severe. The feelings of impending doom and having your heart beat so fast and hard that your ears hurt, are inexplicably uncomfortable. For the remainder of the morning, and for the rest of the day, my heart rate was more than twice my normal, and had me shaking - not helped by the other effects of the reaction.

I'm so glad to be at home to make a full recovery, and am nervously awaiting Friday, for my post-op appointment. Hopefully it will be then, that I will find out more about the platelet reaction, and about the surgery itself.

Surgery and the rest...

Finally home from the hospital, and I'm feeling pretty rough. Glad to say that there's little to no pain in my hand, despite it being riddled with pins and wires. I've been having gut problems, owing to the opioids I've been on, and a gradual deterioration of my GI function since before my operation. Despite eating next to nothing, my bloating has become so bad that I've put on 3kg since being admitted to hospital and the pressure in my legs is phenomenal.

I had the joints in my hand fixed, and had platelets transfused as well. For the second time, I had an anaphylactic reaction to an IV product - this time, the third platelet pool. I was fully awake this time (as opposed to anaesthetised, like last time), and the experience was second to none. My vision went completely, I was seeing yellow fuzz, and my heart felt like it was beating out of my eardrums. I was incredibly dizzy and just felt like I was going to die. It all began with my body feeling really tingly and my skin feeling prickly, then the onset of a full-body rash.

I also suffered badly from being given morphine during theatre. My anaesthetist had said that I was in a lot of pain during the surgery (probably detected as a blood pressure rise), even though I was fully asleep and couldn't feel anything. Since an elevated blood pressure can be dangerous, they had to give me strong pain relief to decrease it. However, on awakening, I couldn't stop vomiting and was sick on nearly everything and everyone that came near me (sorry, I know that's really unpleasant!). My respiratory rate was very high, as was my heart rate - and they figured that I should have the morphine reversed with naloxone, and be sedated further with diazepam. I felt so much better with these two drugs, followed by a big dose of IV ondansetron for my nausea. I've never felt so scared in my life, but it was so comforting to have my consultant there throughout; it was the first time a consultant has been there with me, when I woke up, rather than being somewhere else in the room. She'd said she would stay with me throughout the operation and be there when I woke up, and she really meant it. I can't tell you just how much that means to me, and how relieved I was not to be alone.

Other than the transfusion reaction and the morphine saga, the operation went relatively well, given the circumstances. My surgeon thinks that it may have been too late, as what he found was a lot worse than what had shown on the scans. When he went in, he came to realise that there was almost no bone left, while the scans had shown a feasible amount of bony stock for the fixation. At the end, however, he said that it looked alright from the outside, but there was only a slim chance that the much-needed bone regrowth would occur. Of course, it was a shame, as I hadn't expected to hear this, but looking back. I wouldn't have changed my mind to go forward with the surgery. I'll write more a bit later on about how events unfolded from there. x