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
Sharing the ups and downs of life as a twenty-something year old medic. I have Ehlers-Danlos Syndrome, postural tachycardia, persistent hypotension, a platelet function defect, gastroparesis and intestinal dysmotility, and am overcoming AVM and osteomyelitis. I am also TPN-dependent. Follow the rest of my journey at www.nogutfeelings.blogspot.co.uk
Showing posts with label Arteriovenous Malformation. Show all posts
Showing posts with label Arteriovenous Malformation. Show all posts
Sunday, 5 August 2012
Saturday, 4 August 2012
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!
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!
Wednesday, 25 July 2012
Vascular clinic appointment
I totally forgot to write yesterday! I was trying to make this month a "blog-a-day" month, just for fun, but I've obviously failed this time. I was, and am ill with the sick bug - or at least something like the sick bug. I had to go to the optician this morning and almost couldn't leave the house, but we made it there and back! I received my parcel too, of medicines and the protein shakes that I've been told to drink. My mother bought me some tops today, four vests and two Disney t-shirts, which I absolutely love!
I have, however, lost two pounds again. I'm just totally overwhelmed at what has come of the dietitian appointment and don't know whether I can take it all on so quickly. I am seeing my orthopaedic surgeon on Friday again to let him know how the dietetics appointment went and to ask him a few further questions.
Yesterday, I had my appointment with my vascular surgeon. He said that it was normal for people to live with AVM cells present and despite it causing me problems, he declined to send me for any sort of scans. I guess it would just be nicer to know what's there, rather than dealing with something I know nothing about. However, we digressed from "medical talk" and proceeded to have a rather in-depth conversation about classical music... He wants to see me in a month's time, but there's only little chance that this will happen. He was telling me how wonderful the wounds looked, despite my orthopaedic surgeon telling me otherwise - furthermore, I can see for myself that the wounds are bigger and are bleeding more (but this is evidently no cause for concern...). While I very much appreciate his optimism, in a situation like this, I'd be grateful for some realism too. It's not the best confidence boost when you feel rubbish and someone tells you that this is the best it's going to get for some time still!
I was very slightly upset after yesterday's appointment but I'm sure that with some encouragement from my orthopaedic surgeon, I'll be easily appeased and feel like I'm on track again. Hopefully the sick bug will be over with, but it'll definitely take its toll on my body. The weather, again, has been lovely, but I'm still yet to go out in my shorts and vest this summer! Don't think this "heatwave" is supposed to last very long, unfortunately!
I have, however, lost two pounds again. I'm just totally overwhelmed at what has come of the dietitian appointment and don't know whether I can take it all on so quickly. I am seeing my orthopaedic surgeon on Friday again to let him know how the dietetics appointment went and to ask him a few further questions.
Yesterday, I had my appointment with my vascular surgeon. He said that it was normal for people to live with AVM cells present and despite it causing me problems, he declined to send me for any sort of scans. I guess it would just be nicer to know what's there, rather than dealing with something I know nothing about. However, we digressed from "medical talk" and proceeded to have a rather in-depth conversation about classical music... He wants to see me in a month's time, but there's only little chance that this will happen. He was telling me how wonderful the wounds looked, despite my orthopaedic surgeon telling me otherwise - furthermore, I can see for myself that the wounds are bigger and are bleeding more (but this is evidently no cause for concern...). While I very much appreciate his optimism, in a situation like this, I'd be grateful for some realism too. It's not the best confidence boost when you feel rubbish and someone tells you that this is the best it's going to get for some time still!
I was very slightly upset after yesterday's appointment but I'm sure that with some encouragement from my orthopaedic surgeon, I'll be easily appeased and feel like I'm on track again. Hopefully the sick bug will be over with, but it'll definitely take its toll on my body. The weather, again, has been lovely, but I'm still yet to go out in my shorts and vest this summer! Don't think this "heatwave" is supposed to last very long, unfortunately!
Sunday, 15 July 2012
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!
Sunday, 23 October 2011
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.
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.
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