Following on

On Wednesday, I had my first post-operative appointment with my hand surgeon. I've been struggling with my afterthoughts and having regrets with hindsight lately, but my surgeon has been really lovely about everything.

When I had the dressings taken down, I was really worried, since I had no idea what to expect and what it would look like. The best news is that the ulcer is now gone, and the skin is closed. However, there is a lot of bone missing, and I won't get it back, however successful this operation is, and has been.

My recovery seems to have stalled a little - I'd thought that my gastrointestinal symptoms would ease, once I was off the antibiotics, but it seems like they're here to stay. I've been getting very bloated to the point where I look nearly pregnant, and things just don't feel right. For a while now, I've realised that milk doesn't agree with me, nor do fried, heavy foods. Generally, I snack lightly during the day and then have a small meal at dinner, which seems to suit me much better than my old diet.

I'm disappointed that my joint has been fused totally straight. On the morning of my operation, I'd asked my surgeon whether it'd be fused straight or bent, and he informed me that it would be slightly bent, as it would be the most functional. Now I've seen it, it's straight, if not slightly too straight and verging on hyperextended. The timescale with which we were working pre-operatively was so tight, that now I look back and have many regrets.

My mind and body are all-over-the-place right now. My Ehlers-Danlos is really rebelling since the operation, and I'm having quite a few mucosal bleeds since the effect of the platelet transfusions wore off. I'm seeing my haematologist in two weeks' time, so hopefully we can put a stop to the bleeding. This is most definitely not the most coherent post I've written, but it's difficult to put so many thoughts in writing when nothing's quite straight. Hopefully I'll be able to write again soon, with some better news. x

Overcomplicated

Have you ever felt that everything is overcomplicated? Or that people are out to complicate things for you?

I've never had to wait so long for a post-op appointment. I had my surgery on Friday, 7th June - and I still haven't got an appointment date. My surgeon spoke to me the day after my operation, Saturday, saying that he would see me "next week" - the week beginning that Monday - but we never arranged a day or time. The secretary, talking with whom feels like having my hairs plucked one by one, phoned me to say that she could only offer me an appointment in two weeks' time; tomorrow. I didn't kick up a fuss, since one week shouldn't make a huge difference.

Concerned about drug side-effects, pain and just not feeling myself, I phoned her to see if I could move the appointment forward. I spoke to her this Monday, and asked if I could get an appointment either on Tuesday or Wednesday. I booked an appointment for Wednesday, and hung up. I emailed her for confirmation, just in case, as her voice is hard to hear and understand. She emailed me back saying that the appointment had been moved further, to next Wednesday, instead of being brought forward, as I'd asked. My original slot had been taken.

Next week, I go on placement (meaning I can't attend clinic), which I was really looking forward to. Unfortunately, I won't be able to scrub into theatres and do things I wanted to do, because I won't have seen my surgeon and I don't want to reduce the dressing in case anything happens.

I wrote back, asking if there were any slots for the Wednesday just gone instead, and was told that the clinic was full, though she could overbook. I thought this was feasible, and agreed, as long as the surgeon was fine with it (which he has been, in the past). I never got a reply after after this, and contacted her again yesterday to check if I was on the list, and still heard nothing. All the other times I'd contacted her, she'd replied within the hour, if not sooner.

Finally, I received a reply this morning, saying that I was on the list for next Wednesday. What part of being on placement and unable to attend does she not get? She didn't answer my email before the clinic, and even when she did, she didn't answer my question. Surely it's just common courtesy to reply, even if she's been unable to overbook? I feel totally let down by the system - not only is it poor service, especially considering this is the private sector, but it's rude, and she doesn't seem interested in helping people at all.

What I experienced after this was something I shan't forget for a while still. I wrote back, telling her for a second time that I would be on placement and that next Wednesday wouldn't work for me. Her reply to me asked if I wanted to change the appointment. I couldn't believe I was seeing this; I had just told her I couldn't make it, and she just wrote back asking if I wanted to change. Wasn't it clear enough that I wanted to change the appointment? I can't think of many people that would say no!

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