Treading carefully: anorexia nervosa and gastroparesis

Right up until I was diagnosed with severe gastroparesis, I could tell that most, if not all of the doctors I saw suspected that I was anorexic. A few years ago, I was "healthy", albeit quite overweight with a BMI of around 30. In October, it was 19, and today, it's 16.

"Do you exercise excessively?", "Are you afraid of weight gain?", "Do you count calories and restrict your intake?", "Is your self-esteem correlated with your body weight?" 

To all these questions, I always say the same thing - no. However, it's difficult, because to some extent, I do restrict my intake, for the very reason that eating too much makes me sick. Of course, I would eat normal portions if I could tolerate it, but because I know what they're getting at, I say no anyway.

I know I've written about prejudice and chronic illness before, but I must reiterate how frustrating it is to want to be somewhere that you can't, just because of people's assumptions.

I must highlight that there is absolutely nothing wrong with being anorexic, and that I'm not trying to make mockery of people who suffer from anorexia nervosa or other eating disorders, but am merely speaking about how it's used as an "easy label". For both anorexia nervosa sufferers and people with gastrointestinal disorders, it's a shame that far too many doctors are so quick to "diagnose" anorexia nervosa.

The sad fact here is that there's nothing that we, as patients, can do about people making assumptions. Assumptions are the reason that I chose to leave my previous gastroenterologist, since he made me very nervous and I was worrying so much before, during and after his appointments that we were never going to get to the bottom of my problems. In fact, there did come a point when I began to wonder if I was indeed anorexic. Here we are, with one of, if not the country's leading doctor of neurogastroenterology, and straight away, he is "teasing" for underlying problems (I quote).

Similarly, what if I just have a small appetite or a super-high metabolic rate? I am certain that there are people in a healthy existence who are slightly underweight but don't have anorexia nervosa. All I'm trying to say here is that while patients with functional and psychological problems may present with similar symptoms, it is not only foolish, but in fact irresponsible, to jump to conclusions and make assumptions.

Been a while...

I can't believe I last posted in August... Since then, a lot has happened for me:

1. I've moved out into my own apartment, by the riverside.
2. I was diagnosed with a severe gastroparesis.
3. I passed the year as a merit student.
4. I was diagnosed with autonomic dysfunction and a persistent low blood pressure.
5. I got a new gastroenterologist!

I think that's quite enough for now, even though I'm sure there's more things. I would include the fact that my arthrodesis was unsuccessful, but it's not something that's "happened" as such, more something that hasn't happened! 

The best thing for me has been moving out. I do miss my family, but I love it. I live right by the river and there's a beach downstairs, even though it's not the type I can imagine myself sunbathing on! 

The biggest thing has been the diagnosis of gastroparesis. I had so much trouble with my old consultant thinking I was anorexic and asking me really leading questions and making clear, assumptive statements about my weight loss. My new gastroenterologist was on the verge of making the same conclusions, but I was saved (even though it's not a good thing) by the gastric emptying study. There was no transit within the timeframe and finally, anorexia is out of the picture. Similarly, I have a colonic dysmotility and a probably small bowel dysmotility too.

Apart from the wobble we had with almost going down the anorexia road, my new gastroenterologist and I get on really well. He is a really lovely person and the centre I go to happens to be a reasonable distance from my home and is also one of very few specialist centres in the country. When I undergo my small bowel manometry and if I do have small bowel dysmotility, then it's likely that parenteral nutrition will be used to bring my weight and nutritional status up. If my small bowel is still functional to some degree, then I think we're looking at jejunal feeding. I think I'll post separately about my feelings towards this, for fear that this post could get too long! 

As for my autonomic nervous system... I've started on two new drugs for it and am not really doing much better. They can increase the dose of the latest one, but I have to wait a few weeks to let it really work, before they can adjust it. I love my neurologist too - he's absolutely hilarious and we always end up making jokes and laughing through the appointments, which is always pleasant! 

Anyway, my studies haven't been going so well lately. I've taken lots of time off and have so much to catch up on. I've been feeling a bit down, emotionally and physically, but I hope I'll bounce back soon. 

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.

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.

A Fine Line: Prejudice in Chronic Illness

For many people living with chronic illness, medications and medical treatments only account for half the battle we fight, if that. The rest of the struggles we face are from people's misconceptions and misunderstandings, sometimes even from the people who are supposed to care for us.

Fatigue and tiredness play a bigger part in chronic illness than the lay public may first think, and affect us a lot more than anybody could anticipate. In my case, I live a full life, no different from the life I would be living without Ehlers-Danlos, AVM or any of my other conditions. I went to school, had lots of friends and passed my first year of medical school with a merit. Most of the time, my friends are great about my conditions and don't treat me any differently for that. 

The problem I have, however, is with doctors who don't know and don't seem to want to know about anything less common than your common cold. Unbeknown to them, I am fully aware that they judge me for what I say and how I feel, and apparently it's not okay to be anything other than the average patient. It seems grossly unreasonable to think that I am being judged for feeling the way I do, physically, due to my conditions. I'm not sure how many of these said doctors have ever thought about it that way.

I know that sometimes, there are people who perhaps don't make the best of their time and spend it making a fuss or dwelling on the unhappy things. However, it's frustrating and is a shame that doctors take that image in, and apply it to nearly every patient that walks through their clinic door.

These doctors have no idea what damage they can do to people, and are blind to the effects they have on people's confidence (or lack thereof) and wellbeing. They make it difficult for patients to trust doctors as a whole, especially new doctors, and make patients feel judged or paranoid when that's not the way it should be. I'm not denying the existence of mental illness and the likes of hypochondria, but I just wish doctors would consider things more carefully before saying the first thing that comes to their minds.

I was diagnosed with Ehlers-Danlos Syndrome by the most well-known EDS doctor in the country, and have a letter detailing the tests and results that led to the diagnosis. Yet, a lot of my doctors treat it as a provisional diagnosis of a disease that barely exists, by addressing it as the "possibility that [you] may have some sort of collagen disorder". Things like this still happen to me, although slowly, I'm disengaging from those who refuse to believe in me and in EDS. I don't need that kind of attitude, and neither do my other doctors who fully believe in EDS and actually want to help. 

Illness and me

Sometimes, it's easy for us to look at our lives and pick out and be sad about the bad things in our lives. It's human and it's normal, and occasionally it's helpful to let things out and we're allowed to be sad when things aren't going so well.

For me, I know about the suboptimal things that have been, and are going on. But I know that whether I'm sick or not, I'm still me, and nothing short of a personality transplant can, and will change that. Even though it's a big part of me and has implications on a lot of things I do, there's so much more to me than Ehlers-Danlos, AVM, osteomyelitis and everything else put together.

I'm happy. Happy with everything that my life is at this moment, and I hope none of that is set to change. There are people who will ask me all the time how I am, and how my "hospital life" is getting on, and sometimes I wish they wouldn't. A lot of the time, they mean well, and want to know how I'm doing. I just hope that people don't think that I'm defined by illness, because I'm not.

I don't think I'd be the person I was without everything that's happened over the past few years. On the outside, it seems like a rotten deal, but the experience has helped me to learn how to deal with things, and I'm no longer feeling lost. It might sound strange, but I feel like everyone else, and like how I used to. Physically, of course I know that I feel different, but my mind has adapted to that to help me move on and get back to achieving what I was achieving before this came along.

I hope that people aren't sad for me when things happen because I don't like seeing people upset when I'm feeling okay and when I know that everything will be fine. Instead of people looking in from the outside and being sad, I want to take people with me on my journey and show them everything that I've learnt. So, if you'll let me, I want you to come and join me, and learn too that living in my shoes isn't as distant and alien as it seems, even if I may unintentionally imply that through my words sometimes.

Long Road

We decided that I would revisit my rheumatologist now that I am "stable" from the point of view of my osteomyelitis. A week ago today, I had the appointment, which turned out to be a relatively successful experience as well as a confidence-booster.

I was pleased to see the consultant, nearly three years after I'd first seen him. We talked about medical school and other things in my life, and then moved on to how things had been with my osteomyelitis and AVM. He was shocked to hear of the way I had been treated, and how people had overlooked important factors when deciding on my treatment. In a way, it was liberating and I was so relieved to hear that I wasn't crazy and that my concerns about peoples' attitudes and actions were shared by someone so well-respected and renowned in the medical world.

We ran through things briefly, and then talked about the problems he thought I had with my autonomic nervous system. I've been experiencing symptoms with my digestive system for so long now that it felt strange for someone to want to help. Of course, it was welcomed help, but it still felt bizarre for someone to take me seriously. Provisionally, we think that I have some sort of motility disorder with my digestive tract due to an erroneous autonomic nervous system. Additionally, he found that I become tachycardic when I stand up. I'd always known that I become dizzy and light-headed when I go from lying or sitting to standing, but this has been apparent since I was very young and so I never thought there was anything wrong. 

As a result of the appointment, I have been referred to a neurogastroenterologist and a neurologist, as my rheumatologist is sure that they will be able to help me improve my quality of life. Though privately, the neurogastroenterologist has no appointments until September, as he is away until then. I am yet to hear from the neurologist's office, but am hopeful that I will be able to get an appointment before term starts again. 

I'm definitely satisfied with the outcome of this appointment. Although it's never nice to be told that there's something wrong, I've always known that things haven't been right and have come to accept that. What's great is that I shouldn't have to accept too much more pain and discomfort, because there's actually people out there who want to, and will help me. 

Face to face

Having come face to face with my own mortality several times in the past few years, I decided to put my thoughts down in writing to try and make sense of things in my mind a little better than I have been so far.

Yesterday, with another platelet transfusion, I had another nasty reaction, which sent my body into overdrive. I'm not quite sure what happened or how I got here, but I certainly don't feel good. I don't want to think about the series of events that took place, because that would only scare me more.

Despite the weakness and discomfort I am in now, it's weird to think about how well I am compared to how I could be, and how I actually was yesterday. Once again, it's brought to the fore how important it is to have family, friends and love. Similarly to last time, I was alone when this all happened. It began in the day unit, and I'd thought that I'd be in and out within a couple of hours at most. It was around midday when things started to go pear-shaped, and about four hours later when my parents arrived at my bedside.

Having gone from something so simple, suddenly to something so drastic, makes me wonder. I look at my physical self and ask why and how I made it through so much, with hardly anything to show for it. I know I am lucky.

I'm still not sure how to coherently put my thoughts down, but for now, this will have to do. This year has certainly thrown a lot at me (I'll write about the latest soon), but I know that I will make it through. There are a couple of special people who I love and am thinking of very much at the moment. One of my friends goes into hospital on Monday for GI testing, and has had a lot thrown at her lately. Please pray for her!

Placement: Day 1

Placement today began at 12.30pm, because I had to meet with Human Resources before starting anything clinical. I was SO excited to start - it's cardiac surgery, and something I think I'd be really interested in.

After the administration work was done, I went up to the cardiac surgery ward, and met the SHO with whom I would be working this week. The registrar was also there, and it seemed like such a lovely team. A consultant I'd worked with before was also there, remembered me, and we talked about things that had happened since I was last attached to that hospital. He invited me to examine one of his patients with HPOA (hypertrophic pulmonary osteoarthropathy), who was due to have a lobectomy tomorrow morning. He said that the HPOA would be greatly improved, if not disappear post-operatively. It was amazing how the osteoarthropathy disappears after having the lung cancer removed.

It's so fascinating to see how things I'd learnt in theory were true and applied in practice. Today was a short day, but tomorrow begins at 7.30am, which means I must wake up at 5am, to get there in time. I'll be meeting the other doctors in the Intensive Care Unit, and beginning with the rounds, before heading to surgery. I can't wait!

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

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.

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.

Three years on...

6th April 2010...

Both the best and worst day of my life so far, without a doubt. At around 11am, pretty much as I type this, I had an anaphylactic reaction whilst unconscious, to intravenous Augmentin; a drug containing penicillin. Strange as it may sound, I'd taken penicillin for weeks pre-op and had no problems until the test dose of the intravenous preparation.

Looking through my medical notes, those few minutes were grim... And I'm so glad I wasn't conscious through it, because the scars left behind are more than enough for me to deal with. The night I spent in the Critical Care Unit was horrible; I'd never, and still haven't ever felt so ill in my life. There were moments where I thought I would die, and moments when it felt surreal to be alive after what had happened.

I don't know what drugs they were, but something they gave me made my whole body shake. It was so very strange not to be able to keep myself still, but the adrenaline they'd given me was making my heart rate sky high. Something wasn't quite right with my breathing and my blood pressure was really low.

That night felt like the longest night of my life. I was admitted to the Unit at around 3pm, and was there till around midday the next day. I know it's not that long, but when you're only sixteen and were supposed to just be a day patient, things like this shock you and floods of emotion are released.

Without the fast actions of my consultant, I'm not sure what would have happened; I don't know quite how bad the situation was because I wasn't awake. But I'm just glad that the experience wasn't any worse than it was, because that was quite enough for me!

Nonetheless, I can't believe I've come this far. From 2009, I've suffered from the AVM and Ehlers-Danlos Syndrome, been diagnosed with a platelet disorder and get persistent stomach troubles. But, I've got 11 GCSEs, 3 A Levels and am now finishing my first year of Medical School. So many people and events have made me into a different person to who I would be otherwise, and every single person who's loved me, wished me well and believed in me deserves to share the happiness and the accomplishment I'm feeling today.

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!

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.

Running on low

Today, I received my letter for my next hospital admission, which will take place in just under two weeks' time. However, there's a huge, huge catch.

I was told today that I need to get a FBC and clotting screen done prior to my admission to check that I'm OK for surgery. Problem? My serum iron level is 2 micrograms, but according to my haematologist, it's supposed to be 100. I don't eat red meat by default, so I literally have no way (apart from the transfusion) to raise my iron and therefore my Hb levels. We are really praying that the transfusions are able to top up this huge deficit, because I'm really bearing the brunt of this.

I can't get changed without my body hurting all over and without fainting. I can't seem to do anything without feeling like I'm going to pass out. Things that just used to make me ache before, now give me extreme pain. Getting changed from showering this morning, my body hurt in the same way it used to towards the end of a long-distance run, if not worse. To top that off, the nausea and dizziness that came over me was unbearable and I just felt so inadequate and frustrated that I can't even do the simplest tasks without feeling this way.

Yesterday and today have been difficult days; counting down the days to the transfusions, infusions and surgery is painstakingly slow. I'll also be getting a DDAVP infusion soon, and when I'm admitted, to boost my coagulation and make my blood and platelets behave! I need to go up to the hospital to get yet more blood taken, this will be the fifth time in two weeks that I've needed to get it done. So far, I've had  on average ten bottles drawn each time, and on top of this, I bleed about 100ml blood per day from what is/was the AVM.

Everything just feels like such a drag; I have no energy to do anything, and everything I feel like doing makes my head swim. I've never felt like this before, maybe I've had off days, but this has been a string of days, that has become weeks, of feeling like this. I'm just glad and thanking my lucky stars that I have a great haematologist and surgeon who want to help me get better.

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!