In hospital and not feeling good

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

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

Day out

I've been bleeding every day this week, and have lost quite a fair bit of blood. More than ever before, I now feel like there's AVM left in my finger because the bleeding is always pulsatile. I would be worried about this if the only option was to maintain status quo, but this week, my surgeon should be consulting others from the plastics team to see if they can operate using a cross finger flap which was suggested in the past. If this is done, any AVM left will be removed. I'd forgotten to also ask him about performing a Z-plasty which has also been an option previously, but was never done. I will be sure to ask him about this on Friday when I next see him at the hospital. I am so nervous but excited also to find out whether I can have surgery, but the thought of declination of this chance kills all the hope I have. I'd rather be realistic than optimistic and I know that the chances of a "yes" are very, very slim indeed and I just want to be prepared for the disappointment rather than expect the excitement.

I went out with my best friend today - we went into Central London and did some shopping. I bought a couple of face cleansers and makeup removers, and a few bits and pieces for my makeup collection. It was a really, really nice day and I'm so pleased I could spend it with one of my favourite people. To top it off, I came home and another great, great friend of mine was online and so we chatted the evening away! I have so many best friends and am so lucky for this - people who I am close to not just through illness, but because  we have similar personalities, regardless of state of health.

My new contact lenses are really wonderful too. This is my second trial and my second pair on this trial and finally, I think I've found lenses which really work for me. I am very short sighted and have bad astigmatism too - I think my prescription is around -8.00 on each eye but I'm so glad they finally found lenses that are made in my prescription! Despite all the bleeds lately, I have totally been on cloud nine! I think about my friends and family every day and remember how lucky I am to have them around me to share everything with me! I hope this week is a good one for everyone - sending lots and lots of love to you!

General update

So my next appointment is finally here and I'm really, really hoping that it's the one where I'll receive some sort of good news about what we can do about my AVM. The pain is becoming pretty unbearable as the days go by and the bleeding has failed to ease. In fact, it's become worse even though the open area itself hasn't changed - if anything, it's a little better but this advance is clouded out by the havoc the bleeding has caused (and is causing!).

I bought myself a white dress today - it's lacy and has a navy bow at the waist! I can't wait to wear it but have to wait till the weather is nice again because it's a summer dress! Also bought an orange hoodie (in a moment of madness!), a navy lace summer top and a navy/white striped t-shirt that I hope will go well with a skirt I recently bought. I'm going out again tomorrow to get some leggings and a lipgloss (I can't decide between Chanel and Lancome so we're going to Debenhams to have a proper look). 

Baked cupcakes again today, vanilla sponge but chocolate buttercream icing this time. I iced them using the standard 8-star swirl and didn't put any further decorations on because I thought they looked nice enough plain. My mother had bought me an electric mixer that has the bowl attached to it - I think these are the free-standing ones? I made a rosemary focaccia yesterday and it was really yummy! Didn't take a photo of it though because it was attacked before I had the chance!

I am anxious but look forward to my appointment tomorrow. I am so hopeful that I will get some news because I've been in this limbo for what seems like ages. Results come out a week from today and only then will I find out whether I've gotten into medical school or not. Fingers crossed it'll be a yes - good luck to everyone else receiving results next week and the week after too! 

Living with Ehlers-Danlos Syndrome and Arteriovenous Malformation

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

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

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

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

Yesterday's bleed

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

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

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

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

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.