Memory lane...

I don't know whether it's just me, but my brain associates certain sounds and smells with distinct episodes or events in my life. For example, the songs that I liked at a specific time will always remind me of that specific time - whether it's a good or bad memory.

This evening, my boyfriend and I were sharing music, and I came across an old album that was my absolute favourite back in April, 2010 - the time I was unexpectedly admitted to ITU post-operatively. Memories of those nights flooded back, and just made me realise how far I've come and how long it's been since all this began.

My journey with Ehlers-Danlos Syndrome began back in 2008, and my AVM first ruptured in 2009 - it's 2013 now, I've done three sets of public exams, changed schools, gone to university and bought a flat in that time. I feel like I've achieved so much, yet so little - as I strive to be like my peers, even though I know my starting point is very much further behind than theirs. Perhaps there's an element of denial, but I feel that determination and in a way, stubbornness dominates in this situation. I feel like I can't give in to my body, to my physical and to my mental limits; but sometimes, there's no other way than to surrender to your circumstances.

As for the infection, I left the hospital with the same two infections that I was admitted with, which makes my weeks in hospital feel in vain. I feel like I took time out of university, and relieved myself from normal societal duties pretty much for nothing. It would have put my mind more at ease to get rid of the infection first (and spending longer in hospital), rather than being rushed back to "normal life" with the infection remaining. That time of my life feels unfulfilled - especially since the post-discharge plan is not working at all and I feel the same (or worse) than I did pre-admission.

This week will be my last week at university before the Easter break - and I will be trying really hard to get my doctors to do something to help get rid of the infection so I can return from my break, healthier. My haematologist has told me that I should see him on the NHS rather than privately due to a better haemophilia clinic for back-up. I'm still waiting on my second appointment, which is frustrating because I can usually get one within a week or so, privately.

Anyway, enough reminiscing, remembering and regretting - I'm looking forward to the Easter break and hope that my orthopaedic surgeon can give me some answers, since my vascular surgeon is away. I'll write again soon, but for now - stay well and be happy! xxx

30 days later...

Hello!

As I write this, I'm in a hospital bed hoping that today is the day I can finally go home once and for all. As you probably know, I had my operation on Wednesday, 6th February - and I was subsequently discharged one week after the initial surgery.

I did, however, need to return to the hospital due to bleeding problems and various other problems with the graft and donor sites. I sneakily returned to university (since we were doing dissection!) on Thursday, 14th February. I was still going to hospital for a number of reasons, including having my stitches removed under anaesthetic.

On Tuesday, 19th February, I had an ad-hoc emergency appointment with my surgeon as I had realised that the graft wasn't doing well. We took swabs of the area, and on the 22nd, the results were back. I had a "mixed infection" with a few different organisms that needed treating with intravenous antibiotics. I now realise that the reason for the infection was the fact that the person removing the stitches walked in, without washing their hands nor donning gloves, and started removing them.

So, I was readmitted to the same hospital, to the room opposite the one I previously stayed in. I have spent countless days here, around three weeks. I'm missing lots of lectures and practicals, and just can't wait to get home and back to everything I used to do. For me, it's been particularly tough, because I really am balancing two full on commitments and obligations.

I had a central venous catheter placed into my internal jugular for the IV therapy. This was done by the anaesthetist who did my anaesthetic a couple of years ago, and acknowledging my medical student status, he explained and showed me what he was doing from a clinical perspective.

Four times a day, for about two hours at a time, I received various antibiotics through the line. I finally finished all the antibiotics yesterday and have been put on oral drugs, though my stomach has taken, and is still taking assault from all the medications and it's a difficult task to keep them down.

I still have the infection, but hopefully the oral combination will work out... I'm not holding out a great deal of hope since my stomach has been so distressed, but right now I just need to go back to studying!

I'll post again when I'm home - or when I'm still here and have things to say, though I hope that won't be the case!

Friday, 19th October 2012

How promising is it when your orthopaedic surgeon tells you he feels very sorry for you? I don't know about you, but I've found that most surgeons have nerves of steel and can deal with breaking bad news pretty well (sometimes to the patient's detriment!). This includes my orthopaedic surgeon. Now, we're very close - he knows next to everything about me, and most things that crop up - I tell him. I see him at least once a week usually (and have been for quite a while), which is probably the reason why we are so close. Don't get me wrong - he's as empathetic as I could want (not over-the-top, nor cold-hearted), but today I just realised how much he actually cares.

The number of problems that showed up in my 3T MRI couldn't have been higher. At the moment, I'm waiting for a third opinion - my surgeon has seen it, and so has the radiologist at the 3T MRI centre. However, the radiologist that always reports my scans hasn't seen it; this is the radiologist that my surgeon always works with. So we are waiting for his opinion. But so far, from what I've been told, I don't know what was actually right with it, in fact. I don't even know where to start!

From the AVM point of view, there's a chance of recurrence (this is yet to be confirmed), which actually isn't the worst part of it all. I also have some soft tissue swelling at the proximal joint, and something wrong with the bone (although I am not sure what). It's painful, for sure, and as far as I know, it's an osteophyte, and there's also some displacement of the joint. From what I gather, it's permanently and semi-dislocated-ish, but I could be wrong. All I know is that there's a sideways displacement of that joint. I have some erosion as well as loss of density around the eroded part. The worst part is that there's a fair chance that I have osteomyelitis going on - both the consultants so far have said that there is a bone infection. If this is true, I'm going to need to be on a super high dose of antibiotics for several months, which I'm sure will be great fun. Given my existing GI issues, I'm sure I won't be pleased at all if and when I'm taking them... Even on a basic dose, I get sick and it's just like having a stomach bug!

My swab also grew some colonies of bacteria; strange that, as when the nurse took the swab, I thought it was odd how she didn't get exudate on it. The tip wasn't even wet or even moist so I'm surprised there was overgrowth of anything...

I don't know what's next now. Surgery or no surgery - but I'm totally prepared for it to be a no... Going on all the new issues that have arisen, anyone would say that surgery is more unlikely than likely now. I don't think I'm as upset as I am scared. But we'll just have to see what else is found and what the radiologist says. I guess I'm prepared to take anything on to get over all this!