I'm alive!

So it's been a long time since I last posted, and the bygone months have been the most dramatic, jam-packed ones of my life, without a shadow of a doubt. I spent the majority of it in hospital and have since been diagnosed with gastroparesis and intestinal failure.

On 11th December, I was admitted again to the same hospital and the same ward by my gastroenterologist, and stayed there until the end of February when I finally came home as a HPN patient. I still can't believe that "this is me" and that this is nearly the end of the road in terms of what can be done for my quality of life. Looking back and thinking about the things I've lost over the last few months is really difficult and I am sad in more ways than one for the sacrifices I've had to make.

I was tried and tested with nasogastric and nasojejunal tubes, then had a jejunostomy/J-tube placed, which proceeded to be unsuccessful on the nutrition front. I dropped to 38kg, at which point TPN became a life-saving means of treatment and we had no choice but to have a Hickman line placed for this to be initiated. Since then, I have gained about 6kg and although my symptoms are plentiful and extreme at times, I am back at home and enjoying my privacy, peace and quiet.

Gastroparesis and intestinal failure have really torn my life up over the past few months and have forced me to defer my place at university until September. I learned how much I really do love food and how it is the centre of nearly all social gatherings and occasions. I have learnt much more in terms of life and giving back, but I won't go into that for now.

I'll slowly fill my blog in with what's happened over the next few weeks when I'm feeling up to it. At the moment, everything is a struggle, mentally and physically, and even getting up and dressed takes more effort for me than it should. But anyway, just checking in - I am still alive and just about kicking!

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. 

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. 

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

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.

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!

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.

Chronic illness and an update

There are so many things that I wish I had done in my life pre-Ehlers-Danlos Syndrome. Of course, I never knew I would get it at the time that I did, but as we all know; hindsight is a wonderful thing.

I came back from university today, and felt like going for a run. It's just a dear shame that I have not been very well for the last year or so, ridden with infections and GI problems, and couldn't go because I'm so weak.

My best friend has been most wonderful to me though, and I know she really deserves a mention here. Without her, I would have more bad days than good days, and somehow she manages to understand why I may be sad or upset, yet tell me that it's okay and I should move on. I'm just a very, very lucky girl, and I know it. She's also having a hard time right now with chronic illness, and her school isn't helping any. In fact, I feel like they're picking on her for it, and I feel terrible that I can't be there with her to stand up for what's true.

Another very dear friend to me has gone with her family to Disney on a Wish Trip, and I've been thinking of them all every day since they left. It's such a joy to read the updates and see photos of what must be such a happy time. It's only sad that illness is forever close by, but my thoughts and prayers remain with them in Florida, for a safe, exciting trip and return!

So, I've been put on Clindamycin as of last week (I do, in fact have osteomyelitis), and I am really bearing the brunt of the symptoms. Apparently it's a high dose, and I'll be on it for two months - I've already had GI upset, and yesterday didn't  make it to uni, as I was unwell on my way in (let's not go there...). I saw my GP yesterday and he's also sure that it's the antibiotic making me this sick. I feel weak and wish that I could just spend my days in bed to recover from what has been such a harsh week on my body. It's a shame that there are still many more weeks to come.

We are no clearer as to what comes next for treatment. I keep seeing people over and over again, but I don't want to and don't like it. My surgeon wants to get all the opinions possible but I am growing tired of being sent around, having to explain myself all the time and hear the same kind of stuff repeatedly. I also have issues with my orthopaedic surgeon and some of the letters he writes, as they portray me in a different light to what's reality and makes me feel awful about myself. I will definitely ask to be copied into the letters in future. Anyway, sorry for the long absence, I'm looking forward to the Christmas break now, and hope you are too. Lots of love x

Post-op week #1

Was back at the hospital to see my surgeon and my favourite nurses yesterday! It was really nice to be back with people who knew me and knew how to care for me. Trish did my dressing, and the plaster nurse, Glenn came to help with dressing choices too. We are still looking for a dressing that is very non-adherent but also has a very fine mesh so as to disallow any overgrowth of unwanted tissues. They are going to speak to tissue viability over the weekend and on Monday and I'm back there on Tuesday to see what they say and see whether they have any new ideas.

Still no news on the plastic surgeon though. I think I may have found the right person online but I obviously don't want to go and book anything because I could be as wrong as I could be right. My orthopaedic surgeon was supposed to text me last night about booking the appointment (as he'd forgotten the guy's name) but that never happened. Since he wants me to see this plastic surgeon next week, I hope he texts or calls me over the weekend so that I can book in to see the plastic surgeon and then my orthopaedic surgeon as he goes away next Saturday.

The wound has remained relatively similar but is filling up very quickly with the unwanted tissues - granulation tissue and proteins as well as fluids. I have continuously been sick since my surgery and I really have no idea why. It's proving difficult for me to keep my weight up because I've lost my appetite and am vomiting on top of that.

I have been on a huge shopping 'trip' this week, off the internet and am still waiting for my things to arrive. My parents have bought me two pairs of Ugg boots, a purse from Ted Baker and plenty of clothes and so I am super excited to get my parcels next week!

I am so desperate to see this plastic surgeon, especially with my orthopaedic surgeon going away at the end of next week. Hopefully when my orthopaedic surgeon writes the referral letter, he remembers to let me know the name of the guy so I can book my appointment. Otherwise I'll be back seeing my orthopaedic surgeon next week to demand his name! On second thoughts, I need to get a new prescription for my anaesthetics anyway...

Post-op day #5

I can't believe it's already been five days since surgery! I attended my BMI hospital today to see my surgeon, with much apprehension about their awful nurses, knowing that I would need my dressings done because I am just post-op. I was given the *worst* nurse; I'm surprised I didn't scream when I saw her. As my surgeon says, she's "old school" and wants to get jobs done ASAP, regardless of anything. I bit my tongue and decided to let her have a go even though I knew it wasn't a good time, being post-op.

She took a foot-long pair of plaster scissors and tried to cut my dressing, hacking through the bandages roughly. I told her to stop, but she just told me to let her get on. She then started to remove the dressings themselves with tweezers. I tried to get my other hand in and remove them myself, but as I moved away from the dressings table, her tweezers followed suit and she was adamant that she wanted to remove them.

Just as we were waiting for my surgeon to come, another nurse came to get something from the room. Later, evil nurse left and I was left with the nurse who had come in to get something, as if by telepathy (or magic!)! I was in so much pain and was bleeding my this point and trying so hard to hold things together. My surgeon came in, and awkward conversation ensued (with me half-in-tears...). After 30 minutes of discussion, we decided to try new dressings and my surgeon left, telling me to go and see him again post-dressings.

Later, my surgeon asked if I was alright and commented that I looked really upset earlier on. Embarrassingly, I burst into tears and explained the situation - he agreed that it wasn't right and we ended up laughing about it.

He isn't too happy about the state of things, I am already growing back dodgy tissue and we might have to repeat/revise the surgery. He has also referred me to a plastic surgeon and I should get a call about that tomorrow - he wants to see if I am a candidate for synthetic skin or cell culture which is a very exciting prospect for now. I should get an appointment next week depending on when and where he runs his clinics and I am seeing my orthopaedic surgeon again on the 7th September.

For now, I have been prescribed some marcaine/bupivacaine HCl (I think they're the same thing) for pain relief as the codeine has been making me vomit badly. He wants me to start building up my appetite again as I have lost some weight over the last week or so, which was part of the reason why I was kept longer in hospital than I should have been. I ended up leaving the hospital at 9pm but I'm pleased to have seen my surgeon today. Hopefully it's good news from here.

In an emotionally good place

As much as I've been upset, frustrated and just down over the last few days or even weeks, I've had a good day today. Taken the whole day just to be lazy and do my own things, trying not to think about the "important" stuff and it's been good for me. Although I'm still anxious about things, I've had a relatively calm day. I had an awful night's sleep due to AVM pain, sleeping from 5am till 9am this morning so I'm quite tired today.

I don't feel well in myself though; I keep getting nauseous and am really losing my appetite. Additionally and unusually, I've been running a low grade fever all day today and woke up with a swollen face again. This has happened before and I don't know why, but I might go and see my vascular surgeon tomorrow just in case. I'm definitely seeing my orthopaedic surgeon on Friday but I'll think about that another time. I watched a few documentaries whilst in bed today and just had a nice day thinking about nice things; about all my friends and all the kind thoughts and actions which I have been at the receiving end of.

Despite feeling unwell, I've had a clear head today. The only thing that remains in my thoughts is desperation because I don't believe I will be ridden of the desperation until I wake up from the skin graft surgery and hear that it's been a success so far. I can't take this waiting when I know that university starts so soon and I can't do anything right now to stop the time slipping from my reach.

Hopefully next week is a good week. I'm excited but nervous for Friday most of all, but hopefully I can get in to see my surgeon tomorrow as I don't believe my swollen face is normal at all! Oh, and I also got the letter my dietitian sent to my surgeon... Not the most accurate representation of the appointment but then again I wasn't really expecting it to be. Hope the weekend's been great, thanks for reading x

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!

Finger AVM bleed

I just had a huge bleed from my AVM! This is just a picture of the biggest clot that wouldn't even go down the plug hole in the bath. It was bleeding into some normal saline for about an hour and I could see the pulse - I videoed it only for a bit but don't know how to upload videos here. The space between the plug and the hole is about an inch, so that's how tall the clot it, it's much wider (maybe about three inches wide?). Comparatively, it's quite a big one but only because my blood doesn't usually clot this fast and it's just a big mess! My record still stands at around two litres of blood lost in two weeks back in March 2010.

But overall today I have had a good day and managed to recollect my feelings on this morning's post. I need to be more proactive in my treatment and be a part of the team rather than the subject of science. On my next appointment with my orthopaedic surgeon, I will ask to be referred to a rheumatologist and ask him what he thinks of the synthetic skin and thrombin (though I have tried this once before already). 

Tomorrow I am going to be receiving my parcel in the post at last. I've bought dressings, scissors and plastic syringes (sans needles) so I can use the topical anaesthetic more efficiently without wasting most of it. A 4ml vial costs me around £8 depending on which pharmacy I go to, and even more if I buy from the hospital chemist. I once paid over £40 for 20 Bayer Ciproxin tablets because my surgeon wrote down "Ciproxin" (the branded name) rather than "Ciprofloxacin" (the generic name). But I suppose if you go private, these are the things you put yourself up against! 

Anyway, I am feeling a bit tired from the AVM bleed and very slightly faint/dizzy. I lost around 250ml of blood today and although it's not a lot, I haven't drunk much either and so am just a tad off course! Hope you are all having a wonderful day and have had an enjoyable weekend! 

Hand & Finger Arteriovenous Malformations

Hand and finger AVMs fall into the category of "peripheral AVMs". I wanted to write this to give a more personal view and explanation about hand & finger AVMs because I know there's a plethora of scientific and medical resources available online. I wouldn't want to reiterate what's been written by experts and so I have chosen to give a personal outlook instead.

More often than not, hand AVMs begin as a swollen, pulsating mass that may sometimes resemble the actual vessels. I never developed this "mass" until I actually had an ulceration and a bleed, but once I did develop it,  it was often warm to touch and felt like there was very high pressure inside. It would be painful on occasion only but usually just be an annoying, deep, pulsing sensation - I did, however, get used to it after a while.

Surgery on these things is so difficult and the more that's done, the less likely it is that something else will work. I've been told on four occasions that amputation is pretty much my only way out - but to date, I am fighting it and still have a finger, albeit a non-functional one! I've had three skin grafts, a skin flap, and been into day surgery about a dozen times. My experience may differ slightly from the norm as I also have Ehlers-Danlos Syndrome, a connective tissue disease, which makes surgery more difficult in terms of preservation of grafts and the like.

Due to the number of nerve endings in the hand and fingers, surgery can very often be really painful and I've definitely found that out for myself. Especially when fingernails are involved, the pain is frequently a sickening, terrible one and any movement whatsoever under the dressings causes absolute agony. I know it all sounds like a "hell-on-Earth", but with the right pain management, everything will be toned down quite a bit. In terms of my own pain management, I don't often ask for much and usually wait it out, but have realised this to be the wrong approach altogether (still working on changing it though!).

As for bleeding, I've had more than my fair share of it - my most is losing three pints in two weeks. It's important to seek medical help whenever a bleed is bad because massive blood loss is harsh on the body, as I've found out for myself. Whatever the severity of a bleed, if you're not sure that you can manage it, it is imperative that help is sought. Oftentimes, pressure does the trick, but if you're a "difficult patient" like me, then electrocautery or chemocautery should provide some relief, for a little while at least.

I have had many people make fun of my AVM and the situation I'm in, and lost friends through my experience. Many people can't deal with others being different and going through difficulty, and I wish I could explain how I'm really the same person, but I would just benefit from their support! I guess that now, I see things differently and have different outlooks and objectives for myself; and all because of my AVM journey.