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.

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

Nothing more than bad bedside manner

Today was a bit of a strange day for me... I had my first appointment with the "new" consultant at the hospital where my haemophilia doctors are based. Needless to say, it was a very poor experience, especially when you compare it with the excellence of the haemophilia centre. Hands down, the haemophilia clinic is probably the best run clinic I've ever been to, with some of the best doctors I've ever seen. And it's all under the NHS, unlike all my other doctors. I was transferred there from the same consultant privately, as the NHS has more extensive services and better back-up for people with bleeding disorders.

The new plastic surgeon, however, was awful. On the outside, he was smiley, friendly and kind, but it soon transpired that this was more than an inaccurate reflection of his personality. I don't think he fully understood the difficulty I am facing with disengaging with my private consultants and moving to the NHS. He didn't appreciate the slowness of the transition, and the fact that I can't just move on with a clean break straight away. Especially now, when there are added complications that must be addressed in good time. It's hard to make such a big change without time.

Whilst I can understand where he's coming from, he told me right at the start that he wasn't going to treat me if I was seeing the other consultant. He wasn't even going to come up with a plan nor tell me what ideas he had, if any. This, I thought, was appalling. How is it so, that he can write me off straight away, without a second thought? Furthermore, the way he treated me was worse. He wanted to see the wound that was left - which was totally fine by me, until he decided to take the scissors and cut right about the wound. I couldn't help but flinch; his response to which was to chastise me that he was just cutting the dressing. When you've got a bone infection and a degrading joint, the slightest touches and movements hurt. I didn't mind the pain, and I didn't recoil, but it was his reaction that disgusted me.

He proceeded to tell me that he was going to apply silver nitrate to the wound. Not something I particularly like, but I kept quiet nonetheless. He left the room, while I gathered my belongings, only to find that he'd gone off in another direction, out of sight, when I came out. I was left standing in the waiting area for a good few minutes. When he eventually found me and took me to be silver nitrate-d, the process hurt me so much that tears just welled up in my eyes. He saw this, and remarked that even his paediatric patients let him do this without it hurting. Now, I know he's been there and seen it all, but it was genuinely painful and I was, again, appalled at his words. However, the worst was yet to come. A nurse came over, and instead of being discreet, he exclaimed to the nurse, "Look, she's upset now!".

I just couldn't believe the whole experience. After that, he took me back to the waiting area and demanded that I "sit there" while he had a look at my MRI. Five minutes later, he asked me in, made a few comments and decided that I wasn't worth seeing again since I hadn't fully cut off connections with the private side.

All in all, I can definitely say I won't be going back. Not because he's not a good clinical scientist. But because his bedside manner and treatment of patients was so very poor that I can't stand being insulted and humiliated like that. Not only did he upset me, but he commented that my vascular surgeon "wouldn't care about my hand, and just the vessels" in an extremely derogatory way. I'm not going to pretend that everything's been plain sailing, but I know for a fact that my vascular surgeon has always had my best interests at heart, despite being a little bit slap-dash at times. This is no way for the new surgeon to behave, not least to belittle my other doctors. He even mentioned that I've been wasting my time over the past few years. Thanks, but no thanks.

Beginning of the beginning

This week has been filled with visits to the new hospital... I'm already a haemophilia patient at this new place, so it wasn't a totally novel experience for me. I met with the new surgeons, although that didn't turn out to be as successful as I'd thought it would be. My file was specifically put in the consultant's pile, as per request of the other doctors I'd seen, and the haematologists. However, another pushy patient insisted on getting her file switched with mine, so lo and behold, I did *not* get to meet the consultant himself. I saw the registrar instead (Thursday), had my MRI on Friday, and still getting over the to-ing and fro-ing today.

The new hospital is at least 90 minutes from my home, which makes each visit a day trip. I was disappointed, to say the least, that a bossy, self-righteous woman got me pushed out of the queue, despite the doctors' requests that I saw the consultant himself. I suppose the clinic was busy, and nobody there knew me in person, so I had to swallow it and accept the wasted day trip.

Friday's MRI was a challenge in itself... Not least because it meant waking up at 6.30am to arrive at the hospital for 8.50am, but it took three people to put a cannula in the only patent vein I seem to have left! I don't know whether it's just me, but the ONE part of myself I can't stand people poking at is my elbow crease, like *right* in the crease - probably because of previous bad experience and skin graft harvest, but still!

They did manage to cannulate me in the end, and inject the contrast. I hate MRIs, because for starters I'm terrible at keeping still without getting those irritating itches, and second of all, the noise is so intermittent that when you think it's all over, it starts again and you look like you've just had an electric shock. Yesterday's scan took about an hour, and made me dizzy from top to bottom at the end... Getting up from the table, I was stumbling and hoping nobody would see, when the radiographer asked if I was alright. What's worse is that he then commented about how being in the scanner does make you very disorientated in a slightly awkward way, which of course made me feel like such a pathetic fool!!!

In any case, I'm back there at the beginning of May, and at the haemophilia clinic in June. Finals are coming around too fast, and I'm still lazing around; much to my regret, I'll soon realise!

Moving on...

10th April 2013... I would never have anticipated that one appointment would bring so many changes to my care and probably to my life. I was transferred to the NHS by my haemophilia consultant as I have a bleeding disorder that cannot be fully looked after in the private sector.

When I arrived at the clinic on, my usual consultant hadn't yet arrived, and my notes were instead picked up by a different consultant (who turns out to be one of my lecturers), who told me he'd be with me shortly. When I was called in, we talked about my surgery and about medical school, when someone knocked at the door. I was surprised to see my usual consultant in the doorway, who noticed me straight away and sat down to chat. The three of us discussed what had happened during my previous admissions, which led my doctors to decide that I wasn't adequately covered for the bleeding problem. They decided that I should be moved out of the private sector, and into the NHS, to receive all my care at the haemophilia centre, so if I needed any more surgery, they could co-ordinate things from the haemostasis point of view.

They said it'd be around a month until I got to see the plastic surgeon, which felt like such a long time since appointments can be booked for the same week in the private sector. However, I was lucky that on my way home, my consultant phoned to tell me that the plastics team would be able to see me the following day. Unfortunately, I had a mandatory GP placement to attend and a public health presentation to make, but my consultant insisted that I attend the appointment and therefore contacted the placement directly to inform them of the situation. 

I saw the new doctors on the Thursday, who said that I should also be seen by the congenital hand anomalies clinic, and that I'm probably going to need another operation. My appointment with the new clinic is on Thursday. It is with mixed feelings that I move on, but I know that I can always see my old surgeons any time, given the incentive that the private sector is run on. I'm being treated like a colleague, and have been told on more than one occasion that I should have expected much more from the private sector than I got. Haemophilia have really looked after me so well and treated me so much better than I've been treated by so many people in the past. I can't wait to begin my new journey, but after four years, it's going to be hard to move on.