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.

Start of new things

I know I haven't written for ages, and I can only attribute my online absence to the changes that have taken place in my life and the current circumstances. Now, I am a university student; a medical student, and I can't believe that I'm here!

So, I know that there must be some people around that want to know how I'm doing, medically. Lately, I have met a few new AVM friends, people with young children suffering from AVM and others who I've been lucky enough to meet "just because".

As for my own situation, I am trying to get referred to a different plastic surgeon nearer my university. The man I saw previously doesn't work too far from me, but I figured that I may as well find someone nearer since I didn't feel like I got on well with the previous guy. My orthopaedic surgeon is still doing things for me that I thought nobody ever would; suggesting things and doing things before I even ask. My vascular surgeon has taken a back seat, which doesn't really bother me - and in fact, works nicely since my orthopaedic surgeon has taken a step up. It means I don't have to miss too many lectures and practicals too!

My orthopaedic surgeon has fallen sick, however, and I am so worried about him! His secretary says that he's not sure if he'll be in clinic next week, after having missed this week. He must be quite ill if his illness means he must take more than a week off - I just hope that he gets better as soon as possible. My vascular surgeon has said that in the meantime, if I don't see my orthopaedic next week, that he will see me regularly until my orthopaedic is back. I am so lucky to have so many doctors who are willing to stand up and look after me when others aren't able to.

I have had numerous infections in the past month, but have also managed to maintain myself at a stable weight, although this takes much effort and preoccupies my mind all the time. I have been very busy with all-things-uni, though I know that this is only set to get worse, so I am trying to keep on top of everything while I know I still can.

There are so many more things that have happened since I last wrote, but there is no way I'll be able to fit it into a longer-than-average sized post! I break up for Christmas break on the 21st December, and I have no days off until then - now that I'm almost on top of all my work, I should be around more than I have been. Meanwhile, please take care and stay well!

Plastic surgeon referral

After a few days feeling all hung up about the possibility that I may never get to see this new plastic surgeon, I got a call yesterday whilst on the way to the hospital from someone mysterious. She had the same name as me and I thought she was prank calling me - because I was on the train, the signal was bad and I was pretty convinced that it was a joke. I called her back after I'd gotten off the train and turns out it was the plastic surgeon's secretary. I had an appointment arranged for today, and saw him today.

And it's good news! Well, for now at least. As pessimistic as it seems, I want to remain a realist, and as such not get excited about prospects before they prove true and viable. Now, in the equation we have a dormant vascular surgeon, my orthopaedic surgeon (whom I see every week) and the plastic surgeon I met today. He was a little persistent with going for amputation and termination but I was very adamant that I had thought about it and that I wasn't prepared to go down that road in the foreseeable future. I had explained that this was not the first time amputation was suggested to me, and that I'd considered it carefully every time someone had brought it up in the past. 

He said that performing a cross flap was not really an option since the remaining tissue is very unhealthy and it's highly unlikely anything will take on it - hence the worthlessness of grafting too, since I'll have a donor site for nothing. Instead, he decided that we would use Integra, a synthetic skin base-type produce (I think) and that he would extract abdomen fat and use those cells (he said stem cells?) to embed the Integra into my skin. So, I get a tummy tuck AND there's potential for a cure! Later on, if that works, we'll have to go in for more grafting since there will be a more viable bed for the graft to take on.

There's only one hospital in the private system that he knows of with the special stem cell machine in London so I don't have hospital choice but that's not a problem at all. Better still, he said he wanted to get this done ASAP, so he'll talk to his secretary and I can book another appointment. Then we can go ahead. Lots of steps still, but I'm making small steps in the right direction. 

On the way

I've only just come home and had a shower since I left this morning at around 10.30 to go to the hospital. I saw my vascular surgeon at 11am, then headed out into the city centre to see my orthopaedic surgeon for 2.20pm. As usual, he was late (ended up arriving at 3pm) and left at around six. Most of the time was spent waiting, but I can almost definitely say it was worth the time he spent explaining things to me.

He's still not too happy with my diet and food intake and wants me to see my GP about this and get all the bloods done to get a better picture of my health from that perspective. I asked about my surgery from September 2010 and told him that it was the one I thought worked out best, until someone smacked it with a stick at school (Chemistry demonstration... don't ask). I asked if something like that would potentially work again, to which he answered that it's a possibility but there's a lack of tissue to be used, unless we approached using a pedicle flap from the adjacent finger. He did say, however, that he would need to carry this out with a plastic surgeon and so he'll ask a colleague and get back to me (he wrote this down so I'm hopeful he won't forget). 

He suggested that in the near future I perhaps have some coagulation procedure done to obliterate any troublesome vessels - perhaps an alternative if the plastic surgeon declines to operate. I'm not sure whether it'll be a yes, given the complex past. My hopes rest on the fact that my diet and food intake are slowly improving and therefore there's a chance it'll work. I explained that I feel like I've got nothing to lose since we've maintained status quo since February 2011 and that even if it doesn't work, I want to know that I've tried something that I believed would help.

I had my dressing done by Trish, my favourite nurse, and she was so great! It feels like she's known me for so long already but it's only been a couple of months. I'm going on Wednesday again to see her so hopefully she'll be there. Overall, quite a good appointment despite lots of waiting. I arrived at 2, was eventually seen at 3, had my dressing done at 3.30 after speaking with my surgeon, waited some more for my surgeon to see his other patients, and saw him again at around 4.45, and finally left at 6pm alongside my surgeon even!!! Lots of waiting around but lots of time spent talking, asking and finding out new things. I'm excited at the prospect of new ideas for a cure but am also incredibly nervous that I'm not going to get this chance - which I know is a huge realistic possibility. Sorry it's been a long one but there's been a lot to think about - hope the weekend is a great one for you!

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

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!

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!