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.

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!

One day to go...

I know I haven't written an update in quite some time, but this time tomorrow I'll probably be going down to theatre for my surgery. This will be the last try to obtain skin cover on the tumour defect wound, so that I can begin other sorts of treatments to heal the bone, nerves and the aesthetics (though this is relatively unimportant to me at the moment).

I'm nervous, but I trust that God will look after me, and show my surgeons the light. Pre-operatively, I will get my DDAVP infusion and intra-operatively, two units of blood will be transfused. I have been very anaemic for quite a long time, and I quote that even my haematologist said that I am " very iron deficient". I am due to see him again in a fortnight's time back at the OPD about my platelets and he has already liaised with my surgeon's haematology team (since I'm not having my operation at the same hospital where I see my haematologist).

My surgeon is going to send the anaesthetist up to the ward to set up the lines that I will need. My veins are rather poor and we aren't keen for a nurse to do the job. I've had cannulae in and blood taken from nurses six times this year already and each time has taken them several attempts to get into the veins. Hopefully it won't be too bad tomorrow, I don't know how many lines they will need though, as it seems that I'm having so many things via the IV route. It's probable that I'll just have one, and they'll put a splitter on it (at least this is what I'm hoping for...!).

***

Chinese New Year is on Sunday; I hope I'll be home in time to celebrate the day with my family, not in the hospital. It would be the second New Year running that I'll have spent in the hospital. Last year, I was in day surgery by myself as both my parents were working and it was a school day. This year will be the same, but I'll be admitted as an inpatient, but I have my best friends coming to visit me tomorrow evening. I hope I can be well enough to see them.

I don't have a lot more to say for the moment, apart from I wanted to thank all my friends who have supported me throughout these four years. I have grown so much, physically and emotionally and I wouldn't be the same person, had these events not taken place. I'll try to post another update at some stage, but for now - all I know is that I'm in good hands.

Big update!

I can't believe I haven't posted for such a long time! Hope everyone had a great Christmas, I certainly had a good time with my family and boyfriend. We went to a Chinese buffet restaurant and we really enjoyed ourselves for the festive period. My boyfriend stayed over and it was just a lovely, cosy, time together.

As for a health update, I have recently been diagnosed with a platelet disorder of an unknown aetiology. At the moment, we don't know what the exact disorder is, but my platelets don't aggregate in the way they should; in fact, they don't seem to aggregate much at all. My Hb levels are extremely low, hovering around the 7g/dl mark and as such I am due to have some transfusions this week or next.

Surgery is also taking place for me on Wednesday, 6th February, and I'll be inpatient for at least four days. We planned this before learning of the coagulation problems and my extremely low Hb levels, so I'm presuming I'll be in there for at least a week. Not sure though, but I hope to be blogging during my stay, if and when I can. I am not sure about what will happen with regard to the clotting problem and the low Hb during my stay, as these are likely to impede my recovery as they have done in the past. I am, however, just glad that a cause has been identified for my excessive bleeding and that there is prospective for a cure or at least a treatment for whatever problem exists.

For this upcoming operation, my surgeon will be installing a negative-pressure wound therapy pump to the surgical sites to draw out fluid and blood that could accumulate under the dressings. This is one thing I'm pretty nervous about since I'm presuming it hurts quite a lot, but I'm optimistic because we have not yet tried this. I've heard lots of good things about it, and my surgeon finds the idea promising, so I can't help but feel the same way!

Medical school has been going pretty smoothly so far; apart from the fact that I may be missing an assessed module that begins on the Monday after the operation. I also have an exam that takes place on Friday, 8th February, but am pretty sure that I will be able to get a no-detriment mark for this, as I have been advised to do for the previous exam.

I have had the most amazing Christmas period ever, and just wanted to thank everyone who cares for me, thinks about me and looks after me. I have had a really happy year, and hope that this year will be happier for me, and for everyone!

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!

Surgery, 24th August 2012

I went into hospital on Friday, 24th August at around 1pm for the afternoon theatre list. My theatre slot was actually booked for 6pm but I had to arrive early for the usual proceedings to take place. I was allocated my room on the orthopaedic ward and was seen by my surgeon at around 5pm, as he had just come from the usual clinic that I attend as an outpatient. He explained all that he would do, and it turned out that the surgery was due to be a bigger one than I had expected. He would perform a total debridement and remove what tissue was left, and proceed to electrocoagulate the vessels that were still causing problems.

I spent a total of two hours in theatre, excluding the prep time, and all I can say is that the experience was one on the traumatic side. At times, I felt like they were treating me as an asleep patient and at other times they spoke to me like I were an infant. People were telling me that "this is normal" and stroking my hair and all sorts, when they knew full well that this was my thirteenth surgery and I wasn't really scared. Prior to my surgeon beginning the actual operation, it took five nurses to remove my dressings, one of whom decided to cut it off on the side of the wound, thereby pressing the scissors right into it. The surgeon had already infiltrated the area with lignocaine and was later going to use a long acting agent, prilocaine, I believe.

Anyway, so after the havoc that was removing the dressings, he began the surgery by applying a tourniquet and stopping the initial bleeding that was caused by the dressing's removal. In total, I believe he used around 100ml of anaesthetic, but it certainly looked like more when I looked over at the swollen mass that was my hand! So he began, using all sorts of knives, needles and scraping utensils, to remove "stuff". I don't really know how much he removed as I haven't seen the wound since pre-op. Two hours of cutting and scraping ensued, ending with a few minutes of electrocoagulation, by which point the anaesthetic was wearing off, resulting in a few mishaps as I flinched and couldn't keep still due to the onset of pain.

So I went back up to the ward, at around 8pm and was told that as long as I ate, drank and passed urine, I could go home. I was exhausted, however, and just wanted to rest. I was dehydrated already, as I hadn't eaten since lunch time on Thursday (the day before) but I was so run down that all I wanted to do was hide away. I can't say that the hospital did the best job at looking after me, for many reasons, but I'll go into that another time. Before I'd eaten, drunk or passed urine though, they were already telling me to leave the next day at around 2pm. Of course I wanted to go home, but home was an hour away on public transport but nonetheless I left anyway. I am doubtful that it was the right decision, as I have not been well at all since.

It has also come to my attention that people who I thought were my friends, are not my true friends and instead are egoistic, self-centred individuals instead. People who talk to me with the sole intention of telling me things and who aren't ready to listen and people who think that they are dealt the worst cards in life, all the time. I am so lucky, however, to have a few very, very close friends who are wonderful to me and I just hope I succeed in being as good to them as they are to me. Sorry it's been an extremely long post, but the last few days have been equally as long, if not longer. Love and hugs to all xxx

In hospital and not feeling good

Well for now it's a short post as I'm just out of surgery. In quite a bit of pain, experienced a lot of blood loss and just on the edge right now. Feel like I could cry because everything seems to be falling apart. Spent longer in theatre than I thought, given that this was only a preliminary/preparatory procedure.

Will write properly when I'm doing better, lots of love and hugs to all x

On the way

I've only just come home and had a shower since I left this morning at around 10.30 to go to the hospital. I saw my vascular surgeon at 11am, then headed out into the city centre to see my orthopaedic surgeon for 2.20pm. As usual, he was late (ended up arriving at 3pm) and left at around six. Most of the time was spent waiting, but I can almost definitely say it was worth the time he spent explaining things to me.

He's still not too happy with my diet and food intake and wants me to see my GP about this and get all the bloods done to get a better picture of my health from that perspective. I asked about my surgery from September 2010 and told him that it was the one I thought worked out best, until someone smacked it with a stick at school (Chemistry demonstration... don't ask). I asked if something like that would potentially work again, to which he answered that it's a possibility but there's a lack of tissue to be used, unless we approached using a pedicle flap from the adjacent finger. He did say, however, that he would need to carry this out with a plastic surgeon and so he'll ask a colleague and get back to me (he wrote this down so I'm hopeful he won't forget). 

He suggested that in the near future I perhaps have some coagulation procedure done to obliterate any troublesome vessels - perhaps an alternative if the plastic surgeon declines to operate. I'm not sure whether it'll be a yes, given the complex past. My hopes rest on the fact that my diet and food intake are slowly improving and therefore there's a chance it'll work. I explained that I feel like I've got nothing to lose since we've maintained status quo since February 2011 and that even if it doesn't work, I want to know that I've tried something that I believed would help.

I had my dressing done by Trish, my favourite nurse, and she was so great! It feels like she's known me for so long already but it's only been a couple of months. I'm going on Wednesday again to see her so hopefully she'll be there. Overall, quite a good appointment despite lots of waiting. I arrived at 2, was eventually seen at 3, had my dressing done at 3.30 after speaking with my surgeon, waited some more for my surgeon to see his other patients, and saw him again at around 4.45, and finally left at 6pm alongside my surgeon even!!! Lots of waiting around but lots of time spent talking, asking and finding out new things. I'm excited at the prospect of new ideas for a cure but am also incredibly nervous that I'm not going to get this chance - which I know is a huge realistic possibility. Sorry it's been a long one but there's been a lot to think about - hope the weekend is a great one for you!

Living with Ehlers-Danlos Syndrome and Arteriovenous Malformation

Two years ago today, I was supposed to have surgery. I was supposed to have a free skin flap and a few skin grafts to totally reconstruct my finger, but unfortunately, the surgery was cancelled at last minute. There were to be two surgeons working together, the vascular and upper limb orthopaedic surgeon I still see to date. The orthopaedic surgeon had, for some reason, disappeared off somewhere and nobody knew where he was or why he'd gone away. So, surgery was postponed to 3rd September, 2010...

Aptly, I wanted to write about the difficulties of Ehlers-Danlos Syndrome and having an AVM. Each affects the other, and I can't say it's in a positive way most of the time. When I lose blood from the AVM, it makes me feel weaker than I usually am, and when my EDS plays up, my joints swell and those in my hand swell even more due to the big fluid buildup I already have. The two together have so much potential to knock me out altogether if they decide to deteriorate quickly, albeit for a short time.

In the last three years of my life, though, I've learnt so much. So much good and bad stuff that I can't really say whether the experience has been "worth it" even though I didn't and still don't have a say in what happens. I've definitely met some of my best friends through my experience, people who are so creditable and respectable who I wouldn't have met otherwise. Some of these people will be my best friends for life and are people I can share absolutely everything with. People I don't know have helped me and been so kind to me indiscriminately. It's not all been pretty though; I've lost friends and I realised things about some people that I wouldn't have otherwise but I suppose that's for the better anyway.

I'm scared, though. Scared that my AVM won't be sorted before university (which is really real...) or worse still, it won't be sorted at all, although I doubt that this will happen. I've got so much faith in my orthopaedic surgeon at the moment that he's going to be the one to sort it all out for me and I just want him to give me the chance to believe in him and the chance to let himself make me better. He doesn't think I have any more AVM but I feel otherwise. But I'm going to take his advice and go through what he thinks is best, and if not, we can rethink. I'm just running out of time, patience and energy!

Yesterday's bleed

Had a quiet day today: I went to town with my mother this morning and got a pair of high-waisted jeans from Topshop, a few tops and bought some cupcake ingredients. I decided to ice them as roses today (first time trying it out) as I had pink food colouring that I wanted to try out. They looked alright but I've yet to taste them - the sponge is vanilla as usual and it's a pink buttercream that I made myself.

I ended up emailing my orthopaedic surgeon as I had another horrendous bleed yesterday (no reply as of yet). On taking the dressing off, I saw a purple thread under the skin which I didn't really think much of, until it started bleeding from around that spot. It was then when I realised that the purple thread must have been a vessel.

I was, and still am surprised that I'm not feeling too bad from the bleed. I'm yet to change the dressing today but dreading it, as it's caked in blood which has since dried. It's stuck to the nail bed where there was once a nail, which is most definitely something that makes me cringe like nothing else. I will phone my surgeon's secretary on Monday and book an appointment for Friday - I'd like either the first or last appointment because he's late and overruns. Last week, there were three people before me and he arrived an hour late - by the time he got to me, he was two hours late as he'd gone "overtime" with his previous patients. Because he always sees me, takes me to the dressing/treatment area and then sees me again in the consulting room, the nurses reckon it'd be better to be admitted as a day patient!

Feeling anxious about the possibility of no surgery till I start university and for results day which is in a week and six days' time. I really want to see him before results day as I want to know what's going on and have some questions to ask him. Hoping for a good week until I see him, and wishing everyone a great week too!

Appointment thoughts

Back from the hospital and it didn't go as I'd hoped. My surgeon said that there may still be bits of AVM in my finger but that they're not significant enough to warrant any (more) treatment of any kind. The overgranulation has gotten worse (after an improvement last week) and so we're back to square zero again, so it seems - not even square one, because it's worse than that. Today he said to me that we'd taken "one step forward and two steps back" which is a real shame. He wants the next appointment to be in mid-August (three weeks today) but remember when he said that was when I'd have surgery?

So, I'm a worried JJ about university and about things. I've worked so hard to get the wound in a healthy state and suddenly we're here, and it's worse than before. This obviously means that surgery will be delayed but I want to write to my surgeon tomorrow and ask him a few questions. I don't understand why the granulation tissue can't be removed surgically and then for the new graft to be placed on top. At the moment, it's just hard for things to sink in - on top of that, I've had the sick bug pretty much all week! I'm feeling a bit better today though which is great, but I wish I had two pieces of good news to share!

I was at the hospital from 2pm till 5.30pm again today - most of the time was spent waiting for my surgeon to make his way through the Olympic-caused traffic in the city centre! He arrived at about 3.30pm and I saw him, had my dressings done, and then saw him again. I've been prescribed a new anaesthetic drug which I hope will be helpful at relieving the physical pain of my ulcerated goodness-knows-what (since it's not really AVM)!

I was watching the Olympic opening ceremony earlier, and although Daniel Craig's appearance is rather cheesy (among many other acts of cheesiness), I can't tell if I'm annoyed or shocked at Great Ormond Street's appearance. I would have thought that the hospital has enough recognition, both on a national and international scale, that this wondrous opportunity would be given to a lower-profiled charity. Don't get me wrong, because I know GOSH does some great stuff, but it just goes to show how many people are just swept under the rug that is the NHS. Sometimes, I overanalyse things, but if I were ten years older or younger than I am now, maybe I would get the treatment and help I need for a better quality of life. If I were little, people would see the injustice of a "suffering child" and as an adult, people would be more fearing and more willing to act - if I had a (respectable) job and family of my own, who knows where I'd be now.

Maybe this is self-pity, and if so, I apologise because it wasn't the intention. Once again, the cliché proves true: money cannot buy happiness, health and love.