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!

Monday, 23rd July 2012

I've been worked up about my dietetics appointment for a while now and am glad that it's over. I'm glad that it was really nothing to worry about and now feel really silly for offloading my pre-appointment panic on other people! Somehow, the appointment extended to an hour-long one and ended up in me feeling super overwhelmed and a bit crappy about how I'd let things get so out of control. It was all so intense and there were various points when I thought I was even going to burst into tears. It made me feel small, and I felt worse that my mother was there and sighing at responses that I was giving.

She suggested I visit a counselor due to my apparent slow decline into eating disorder but I declined as I think I'm going to be alright without this. I've just had enough of visiting people who tell me bad things about myself and feel that all I need is some time to sort everything out. I was also told that it's a wonder I'm surviving how I am, and that if I don't change, I'm at serious risk for what seemed like every medical condition on earth, including heart disease, osteoporosis, cancer, and the list goes on. Despite being a "healthy weight" BMI-wise, I'm deficient and depleted in almost everything. It's just best not to think about it, I suppose.

 I'm pleased too that the weather was nice today. I woke up at midday and didn't really do much until it was time to leave for my appointment. The lady was nice, but I knew I wasn't going to "like" what she said, as such. Anyway, I have now been put on protein shakes to keep my nutrition high in this run-up to my next surgery, which I hope will take place soon! I am seeing my vascular surgeon tomorrow to ask his opinion on whether I should get another angiogram - as I'm not sure if the AVM is completely obliterated. If I'm right and there is indeed some AVM left, I wouldn't feel comfortable with going through another surgery knowing that it's not going to work. I'm apprehensive but excited for tomorrow because it might give me the chance to make up my mind about how I really feel right now. I did, however, say that I wasn't going to visit this surgeon for a few months (it's only been a month so far) because I only ever get upset after the visits to the vascular clinic. I hope that tomorrow, this won't be the case and that I'll be able to get my angiogram done! Hope you have had a wonderful start to the week and for all those in the UK, enjoy the weather while it lasts!

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!