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
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 AVM. Show all posts
Showing posts with label AVM. Show all posts
Friday, 28 June 2013
Saturday, 6 April 2013
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.
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.
Sunday, 17 March 2013
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
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
Friday, 8 March 2013
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!
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!
Thursday, 24 January 2013
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.
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.
Monday, 21 January 2013
Big update!
I can't believe I haven't posted for such a long time! Hope everyone had a great Christmas, I certainly had a good time with my family and boyfriend. We went to a Chinese buffet restaurant and we really enjoyed ourselves for the festive period. My boyfriend stayed over and it was just a lovely, cosy, time together.
As for a health update, I have recently been diagnosed with a platelet disorder of an unknown aetiology. At the moment, we don't know what the exact disorder is, but my platelets don't aggregate in the way they should; in fact, they don't seem to aggregate much at all. My Hb levels are extremely low, hovering around the 7g/dl mark and as such I am due to have some transfusions this week or next.
Surgery is also taking place for me on Wednesday, 6th February, and I'll be inpatient for at least four days. We planned this before learning of the coagulation problems and my extremely low Hb levels, so I'm presuming I'll be in there for at least a week. Not sure though, but I hope to be blogging during my stay, if and when I can. I am not sure about what will happen with regard to the clotting problem and the low Hb during my stay, as these are likely to impede my recovery as they have done in the past. I am, however, just glad that a cause has been identified for my excessive bleeding and that there is prospective for a cure or at least a treatment for whatever problem exists.
For this upcoming operation, my surgeon will be installing a negative-pressure wound therapy pump to the surgical sites to draw out fluid and blood that could accumulate under the dressings. This is one thing I'm pretty nervous about since I'm presuming it hurts quite a lot, but I'm optimistic because we have not yet tried this. I've heard lots of good things about it, and my surgeon finds the idea promising, so I can't help but feel the same way!
Medical school has been going pretty smoothly so far; apart from the fact that I may be missing an assessed module that begins on the Monday after the operation. I also have an exam that takes place on Friday, 8th February, but am pretty sure that I will be able to get a no-detriment mark for this, as I have been advised to do for the previous exam.
I have had the most amazing Christmas period ever, and just wanted to thank everyone who cares for me, thinks about me and looks after me. I have had a really happy year, and hope that this year will be happier for me, and for everyone!
As for a health update, I have recently been diagnosed with a platelet disorder of an unknown aetiology. At the moment, we don't know what the exact disorder is, but my platelets don't aggregate in the way they should; in fact, they don't seem to aggregate much at all. My Hb levels are extremely low, hovering around the 7g/dl mark and as such I am due to have some transfusions this week or next.
Surgery is also taking place for me on Wednesday, 6th February, and I'll be inpatient for at least four days. We planned this before learning of the coagulation problems and my extremely low Hb levels, so I'm presuming I'll be in there for at least a week. Not sure though, but I hope to be blogging during my stay, if and when I can. I am not sure about what will happen with regard to the clotting problem and the low Hb during my stay, as these are likely to impede my recovery as they have done in the past. I am, however, just glad that a cause has been identified for my excessive bleeding and that there is prospective for a cure or at least a treatment for whatever problem exists.
For this upcoming operation, my surgeon will be installing a negative-pressure wound therapy pump to the surgical sites to draw out fluid and blood that could accumulate under the dressings. This is one thing I'm pretty nervous about since I'm presuming it hurts quite a lot, but I'm optimistic because we have not yet tried this. I've heard lots of good things about it, and my surgeon finds the idea promising, so I can't help but feel the same way!
Medical school has been going pretty smoothly so far; apart from the fact that I may be missing an assessed module that begins on the Monday after the operation. I also have an exam that takes place on Friday, 8th February, but am pretty sure that I will be able to get a no-detriment mark for this, as I have been advised to do for the previous exam.
I have had the most amazing Christmas period ever, and just wanted to thank everyone who cares for me, thinks about me and looks after me. I have had a really happy year, and hope that this year will be happier for me, and for everyone!
Saturday, 6 October 2012
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!
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!
Saturday, 1 September 2012
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...
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...
Wednesday, 29 August 2012
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.
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.
Friday, 24 August 2012
In hospital and not feeling good
Will write properly when I'm doing better, lots of love and hugs to all x
Tuesday, 14 August 2012
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!
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!
Friday, 10 August 2012
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!
Thursday, 9 August 2012
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!
Sunday, 5 August 2012
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
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
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!
Friday, 3 August 2012
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!
Sunday, 29 July 2012
Frustrated and annoyed
Surgery was supposed to take place in the middle of August. But it's not, now. I don't know if I'm frustrated and annoyed at the situation or at my surgeons. My orthopaedic surgeon has told me a couple of times about "the next step if [this] doesn't work" but the "next step" is always the same as the last and we never get anywhere. When I think about this, all I want to do is cry - I haven't been in this position for a long time, perhaps not for a year or even more than that. I am upset about their nonchalance, which I can sometimes understand, given that the problem is in my hand and is therefore not life-threatening. But the impact on my quality of life has been colossal since it started in October, 2009. I've sat three rounds of public exams, two entrance exams, three scholarship exams and done my university interviews all weaved between hospital appointments and day operations.
I am indeed very upset at the situation I'm left in. Apparently there's no significant AVM left, and as much as I want this "curative" surgery, I'll be reluctant because I know there's still some sort of abnormality in the tissue due to all the bleeding I'm getting. My next appointment is supposed to be on the 18th August, the time around which my surgeries were supposed to take place. I just hate how my hopes were raised just a few weeks ago and have once again been crushed without people realising. I'd have been better off without people giving me false hope in the first place. Still, I am very pleased with my surgeon and understand that things do change - it's all just a bit much for me and it's nobody's fault, I guess. They're doing their best already and I can't ask for more from them, I just wish my body would co-operate!
So, yesterday, I went shopping with my mother in the day time and in the evening we went to my father's other restaurant. I bought a floral bandeau top and a couple of vests but not much more. We also went for a coffee and I had a vanilla latte and we bought two huge biscuits too! But they're still downstairs, in a box! I am going out again tomorrow and hopefully will be baking red velvet cupcakes! I'm feeling lots better from the stomach bug but have no idea why it lasted nearly a whole week. Hope everyone's weekends have been wonderful, and thanks for being great readers!
Monday, 23 July 2012
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!
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!
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!
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