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.

Difficult decisions

"Sometimes, the hardest thing and the right thing are the same." ~The Fray

I love that quote, even though I wish it didn't refer to me. So much has happened recently - I had to make the difficult decision to go back and see the evil consultant mentioned in my last post. I had to see him privately, because time was running out and he was offering things that would help. The appointment was scheduled for Friday, but many phonecalls to and from my current surgeons' offices showed me that I really didn't trust this man, even if he could help. It played on my mind that he was adamant to be the only one involved, and I was scared that things would go wrong and he would refuse input from anyone else and would disallow me to see my old surgeons for advice. I just wouldn't want to feel obliged to him just because he's treating me.

Come Thursday, and I found a new consultant. I phoned up my orthopaedic surgeon's office, and told her about this new surgeon, and she replied by telling me that my vascular surgeon's secretary had recommended the very same person! I called my vascular surgeon's secretary, who informed me that her relative had seen the same person I'd found, and that he was lovely. She called up the new surgeon's office, and I got an appointment to see him yesterday (Friday) before his clinic started.

Turns out that he was born and had grown up in my area, and his sister had attended the same school as me. Again, he said he would treat me like a colleague, which I was so relieved about. No more of this chauvinistic, self-important approach, like the other surgeon had adopted. The bone erosion has progressed so much in the last few weeks, and the X-rays are redundant now because of how much more damage there is. I'm going to be admitted to hospital next week, and will be having surgery to debride the infectious bone and soft tissue. I think I'll be getting an implant or fixator of some sort to hold the bones together.

I can't believe how fast everything's moved on, and I don't think I'm ready for this. I know, full well, that this could make everything a lot worse. But if I do nothing, it'll get worse by itself - the surgery would, and could just hasten the process. Factor in my clotting disorders (just realised the pun there...) and my Ehlers-Danlos Syndrome and the fact that I'm getting so unhealthy from taking so many antibiotics, and I'm just not sure how I'll get through this.