There are so many things that I wish I had done in my life pre-Ehlers-Danlos Syndrome. Of course, I never knew I would get it at the time that I did, but as we all know; hindsight is a wonderful thing.
I came back from university today, and felt like going for a run. It's just a dear shame that I have not been very well for the last year or so, ridden with infections and GI problems, and couldn't go because I'm so weak.
My best friend has been most wonderful to me though, and I know she really deserves a mention here. Without her, I would have more bad days than good days, and somehow she manages to understand why I may be sad or upset, yet tell me that it's okay and I should move on. I'm just a very, very lucky girl, and I know it. She's also having a hard time right now with chronic illness, and her school isn't helping any. In fact, I feel like they're picking on her for it, and I feel terrible that I can't be there with her to stand up for what's true.
Another very dear friend to me has gone with her family to Disney on a Wish Trip, and I've been thinking of them all every day since they left. It's such a joy to read the updates and see photos of what must be such a happy time. It's only sad that illness is forever close by, but my thoughts and prayers remain with them in Florida, for a safe, exciting trip and return!
So, I've been put on Clindamycin as of last week (I do, in fact have osteomyelitis), and I am really bearing the brunt of the symptoms. Apparently it's a high dose, and I'll be on it for two months - I've already had GI upset, and yesterday didn't make it to uni, as I was unwell on my way in (let's not go there...). I saw my GP yesterday and he's also sure that it's the antibiotic making me this sick. I feel weak and wish that I could just spend my days in bed to recover from what has been such a harsh week on my body. It's a shame that there are still many more weeks to come.
We are no clearer as to what comes next for treatment. I keep seeing people over and over again, but I don't want to and don't like it. My surgeon wants to get all the opinions possible but I am growing tired of being sent around, having to explain myself all the time and hear the same kind of stuff repeatedly. I also have issues with my orthopaedic surgeon and some of the letters he writes, as they portray me in a different light to what's reality and makes me feel awful about myself. I will definitely ask to be copied into the letters in future. Anyway, sorry for the long absence, I'm looking forward to the Christmas break now, and hope you are too. Lots of love 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
Wednesday 5 December 2012
Friday 19 October 2012
Friday, 19th October 2012
How promising is it when your orthopaedic surgeon tells you he feels very sorry for you? I don't know about you, but I've found that most surgeons have nerves of steel and can deal with breaking bad news pretty well (sometimes to the patient's detriment!). This includes my orthopaedic surgeon. Now, we're very close - he knows next to everything about me, and most things that crop up - I tell him. I see him at least once a week usually (and have been for quite a while), which is probably the reason why we are so close. Don't get me wrong - he's as empathetic as I could want (not over-the-top, nor cold-hearted), but today I just realised how much he actually cares.
The number of problems that showed up in my 3T MRI couldn't have been higher. At the moment, I'm waiting for a third opinion - my surgeon has seen it, and so has the radiologist at the 3T MRI centre. However, the radiologist that always reports my scans hasn't seen it; this is the radiologist that my surgeon always works with. So we are waiting for his opinion. But so far, from what I've been told, I don't know what was actually right with it, in fact. I don't even know where to start!
From the AVM point of view, there's a chance of recurrence (this is yet to be confirmed), which actually isn't the worst part of it all. I also have some soft tissue swelling at the proximal joint, and something wrong with the bone (although I am not sure what). It's painful, for sure, and as far as I know, it's an osteophyte, and there's also some displacement of the joint. From what I gather, it's permanently and semi-dislocated-ish, but I could be wrong. All I know is that there's a sideways displacement of that joint. I have some erosion as well as loss of density around the eroded part. The worst part is that there's a fair chance that I have osteomyelitis going on - both the consultants so far have said that there is a bone infection. If this is true, I'm going to need to be on a super high dose of antibiotics for several months, which I'm sure will be great fun. Given my existing GI issues, I'm sure I won't be pleased at all if and when I'm taking them... Even on a basic dose, I get sick and it's just like having a stomach bug!
My swab also grew some colonies of bacteria; strange that, as when the nurse took the swab, I thought it was odd how she didn't get exudate on it. The tip wasn't even wet or even moist so I'm surprised there was overgrowth of anything...
I don't know what's next now. Surgery or no surgery - but I'm totally prepared for it to be a no... Going on all the new issues that have arisen, anyone would say that surgery is more unlikely than likely now. I don't think I'm as upset as I am scared. But we'll just have to see what else is found and what the radiologist says. I guess I'm prepared to take anything on to get over all this!
The number of problems that showed up in my 3T MRI couldn't have been higher. At the moment, I'm waiting for a third opinion - my surgeon has seen it, and so has the radiologist at the 3T MRI centre. However, the radiologist that always reports my scans hasn't seen it; this is the radiologist that my surgeon always works with. So we are waiting for his opinion. But so far, from what I've been told, I don't know what was actually right with it, in fact. I don't even know where to start!
From the AVM point of view, there's a chance of recurrence (this is yet to be confirmed), which actually isn't the worst part of it all. I also have some soft tissue swelling at the proximal joint, and something wrong with the bone (although I am not sure what). It's painful, for sure, and as far as I know, it's an osteophyte, and there's also some displacement of the joint. From what I gather, it's permanently and semi-dislocated-ish, but I could be wrong. All I know is that there's a sideways displacement of that joint. I have some erosion as well as loss of density around the eroded part. The worst part is that there's a fair chance that I have osteomyelitis going on - both the consultants so far have said that there is a bone infection. If this is true, I'm going to need to be on a super high dose of antibiotics for several months, which I'm sure will be great fun. Given my existing GI issues, I'm sure I won't be pleased at all if and when I'm taking them... Even on a basic dose, I get sick and it's just like having a stomach bug!
My swab also grew some colonies of bacteria; strange that, as when the nurse took the swab, I thought it was odd how she didn't get exudate on it. The tip wasn't even wet or even moist so I'm surprised there was overgrowth of anything...
I don't know what's next now. Surgery or no surgery - but I'm totally prepared for it to be a no... Going on all the new issues that have arisen, anyone would say that surgery is more unlikely than likely now. I don't think I'm as upset as I am scared. But we'll just have to see what else is found and what the radiologist says. I guess I'm prepared to take anything on to get over all this!
Saturday 13 October 2012
Surgery preparations
I can't believe how quickly things have started moving now. Of course, I know that there's every chance of things falling through and not happening. In a way, I'm more prepared for the "no" than the "yes" now, even though the sequence of events has seemed to occur in favour of the surgery happening.
I went to see my orthopaedic surgeon yesterday (I've been a couple of times since I last posted, but have just been super busy with uni). I had to miss a lecture for the appointment, but was glad to have attended as we spoke for around an hour about what would happen.
From what I gather, the surgery will involve extraction of stem cells via a needle, and the processing of these cells with a special machine and then the impregnation of the stem cells into my hand. I'll get a synthetic skin (mesh-type thing), and will also have stem cells injected all around the atrophic joint and pretty much everywhere, to try and restore all the function and aesthetics. So far, I have some sort of disability in the proximal joint, and basically nothing at the distal joint. There's no nerves, no muscle, a malfunctioning tendon and the bone mass is disappearing.
Yesterday, I was far from expecting preparations to begin. I have a form for a high-res MRI next week in the newest 3T MRI scanner, and had a plethora of bloods taken. I now have some really lovely bruises from the horrible nurse who "treated" me, and had a load of bleeding last night because of a dressings disagreement. I had lots of culture swabs taken to ensure the bacterial load is as low as possible as well. It's a good job that things are happening now, since my orthopaedic surgeon said yesterday that I've taken two steps back from where we were the last time he saw me.
The catch, however, is the cost. And the fact that only one private hospital is capable of hosting my surgeon and I for this procedure to take place. The worst bit? My orthopaedic surgeon won't be carrying this out. It'll be the plastic surgeon I saw about six weeks ago. I can't say I liked him too much, but as long as he can get the job done, my orthopaedic surgeon can still take charge over everything, and I can still see him as though he's done the surgery. There's also only a 20% chance that this will work (something I have not yet told my friends or family), and if not, then amputation is the only way forward. Even my orthopaedic surgeon says so, and he's been the main anti-amputation guy all along. I really, really hope this will work in my favour!
I know it's been a really long post, but I haven't written for ages. I've been so busy with uni stuff, and have a couple of lectures to review this weekend. But thankfully, that's going to be it for today and tomorrow! I'm apprehensive about this surgery, for sure, because it's quite a big one - and I still don't know if it's the right thing. I'll only know, once it's over.
I went to see my orthopaedic surgeon yesterday (I've been a couple of times since I last posted, but have just been super busy with uni). I had to miss a lecture for the appointment, but was glad to have attended as we spoke for around an hour about what would happen.
From what I gather, the surgery will involve extraction of stem cells via a needle, and the processing of these cells with a special machine and then the impregnation of the stem cells into my hand. I'll get a synthetic skin (mesh-type thing), and will also have stem cells injected all around the atrophic joint and pretty much everywhere, to try and restore all the function and aesthetics. So far, I have some sort of disability in the proximal joint, and basically nothing at the distal joint. There's no nerves, no muscle, a malfunctioning tendon and the bone mass is disappearing.
Yesterday, I was far from expecting preparations to begin. I have a form for a high-res MRI next week in the newest 3T MRI scanner, and had a plethora of bloods taken. I now have some really lovely bruises from the horrible nurse who "treated" me, and had a load of bleeding last night because of a dressings disagreement. I had lots of culture swabs taken to ensure the bacterial load is as low as possible as well. It's a good job that things are happening now, since my orthopaedic surgeon said yesterday that I've taken two steps back from where we were the last time he saw me.
The catch, however, is the cost. And the fact that only one private hospital is capable of hosting my surgeon and I for this procedure to take place. The worst bit? My orthopaedic surgeon won't be carrying this out. It'll be the plastic surgeon I saw about six weeks ago. I can't say I liked him too much, but as long as he can get the job done, my orthopaedic surgeon can still take charge over everything, and I can still see him as though he's done the surgery. There's also only a 20% chance that this will work (something I have not yet told my friends or family), and if not, then amputation is the only way forward. Even my orthopaedic surgeon says so, and he's been the main anti-amputation guy all along. I really, really hope this will work in my favour!
I know it's been a really long post, but I haven't written for ages. I've been so busy with uni stuff, and have a couple of lectures to review this weekend. But thankfully, that's going to be it for today and tomorrow! I'm apprehensive about this surgery, for sure, because it's quite a big one - and I still don't know if it's the right thing. I'll only know, once it's over.
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!
Thursday 6 September 2012
Orthopaedic appointment, 6th September
Today, I went back to the hospital to see my orthopaedic surgeon for the first time since I saw the plastic surgeon. He said he wasn't expecting the referral to have gone through so soon but that he was glad it did, and was pleased to see me. I told him that I was unsure if I'd understood the plastic surgeon's plan correctly (I really felt like I was just nodding in the right places). Since my orthopaedic surgeon is going away on Saturday, he said that he would receive the letter from his secretary via email and send me a message to explain everything to me. I really thought that was lovely, since he's supposed to be away and enjoying work-free time but he insisted on writing to me.
We talked through various things and he definitely put me at ease about going forward with the surgery since it's the last chance I have. We're both not entirely sure what's going to happen (due to my poor explaining!) but I'll find out and be sure soon. He advised that even a 10% success rate is worthwhile, and to maybe only reconsider if the success rates go below 5%. However, he did say that it would be hard to estimate as this approach is rather new and given the state of things at the moment, nobody can give an accurate guess at the chances of success.
I am worried about going ahead, but I trust my orthopaedic surgeon more than anybody else involved in the matter. The cost will be astronomical but I can only hope that this is the last time I will have to undergo surgery. My last overnight stay cost around £2,400 and this can only be more, since it involves two separate operations and the use of new stem-cell technology. However, I am excited also - and relieved that so many people are at last on my side. I cannot explain how glad I am to have changed my main care over to my orthopaedic surgeon - I've known him for three years, and more has been sorted in the last six months with him than in the time before this.
He gave me plenty of drugs and dressings for the time that he's away and I'll be seeing him when he gets back. I just wish that he could carry out these two operations - but I guess we can't have it all!
We talked through various things and he definitely put me at ease about going forward with the surgery since it's the last chance I have. We're both not entirely sure what's going to happen (due to my poor explaining!) but I'll find out and be sure soon. He advised that even a 10% success rate is worthwhile, and to maybe only reconsider if the success rates go below 5%. However, he did say that it would be hard to estimate as this approach is rather new and given the state of things at the moment, nobody can give an accurate guess at the chances of success.
I am worried about going ahead, but I trust my orthopaedic surgeon more than anybody else involved in the matter. The cost will be astronomical but I can only hope that this is the last time I will have to undergo surgery. My last overnight stay cost around £2,400 and this can only be more, since it involves two separate operations and the use of new stem-cell technology. However, I am excited also - and relieved that so many people are at last on my side. I cannot explain how glad I am to have changed my main care over to my orthopaedic surgeon - I've known him for three years, and more has been sorted in the last six months with him than in the time before this.
He gave me plenty of drugs and dressings for the time that he's away and I'll be seeing him when he gets back. I just wish that he could carry out these two operations - but I guess we can't have it all!
Wednesday 5 September 2012
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.
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...
Friday 31 August 2012
Strange day today
People can be so deceiving and foolish. Because I am relatively young, people think that it's acceptable to play up on me and scare me, taking advantage of the fact that I feel bad easily. Today, I experienced a really terribly set-up case of emotional blackmail and am unfortunately just sat here grinning at my laptop rather than feeling the emotions that I was set up to feel. Immediately, I saw obvious flaws in what was being said and once I figured things out, I just gave up altogether and my doubts all became my beliefs (or disbeliefs!). I'm just at a loss, but it's not a bad one - just feeling slightly smug right here, right now. Obviously the smugness is tinged with anger, but nonetheless I'm not complaining.
Today, I seem to have taken a couple of steps backwards, health-wise. I have an infection, and if it doesn't keep itself contained, the infection will spread to the bone and I don't know what nastiness will ensue if that happens. I am back at the hospital tomorrow to see my surgeon and have my dressings redone by the nice nurses at my usual hospital. I have had more nausea and sickness than yesterday, but not nearly as much as I had a few days ago. I have stopped taking the codeine and am now on just ibuprofen and using Bupivacaine HCl for the pain on the wound at dressing changes.
No news as of yet about the plastic surgeon but hopefully I will be able to book my appointment tomorrow after my visit to the hospital, if not on Monday. There is a possibility of more surgery in the near future if my wounds don't start behaving and if the proteins and overgranulation don't recede. At current, they seem to be getting ever bigger and the cavity is filling up quickly. In my last surgery, my wound was debrided right down to tendon and bone which is the primary reason why infection at this stage would be bad news. Despite being far from ideal though, the granulation tissue is at least creating space between the bone and the infection, or at least that's what I think.
Anyway, despite the slight deterioration in the state of me, I've had a wonderful day! Hope you have too!
Today, I seem to have taken a couple of steps backwards, health-wise. I have an infection, and if it doesn't keep itself contained, the infection will spread to the bone and I don't know what nastiness will ensue if that happens. I am back at the hospital tomorrow to see my surgeon and have my dressings redone by the nice nurses at my usual hospital. I have had more nausea and sickness than yesterday, but not nearly as much as I had a few days ago. I have stopped taking the codeine and am now on just ibuprofen and using Bupivacaine HCl for the pain on the wound at dressing changes.
No news as of yet about the plastic surgeon but hopefully I will be able to book my appointment tomorrow after my visit to the hospital, if not on Monday. There is a possibility of more surgery in the near future if my wounds don't start behaving and if the proteins and overgranulation don't recede. At current, they seem to be getting ever bigger and the cavity is filling up quickly. In my last surgery, my wound was debrided right down to tendon and bone which is the primary reason why infection at this stage would be bad news. Despite being far from ideal though, the granulation tissue is at least creating space between the bone and the infection, or at least that's what I think.
Anyway, despite the slight deterioration in the state of me, I've had a wonderful day! Hope you have too!
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.
Tuesday 28 August 2012
Surgery, 24th August 2012
I went into hospital on Friday, 24th August at around 1pm for the afternoon theatre list. My theatre slot was actually booked for 6pm but I had to arrive early for the usual proceedings to take place. I was allocated my room on the orthopaedic ward and was seen by my surgeon at around 5pm, as he had just come from the usual clinic that I attend as an outpatient. He explained all that he would do, and it turned out that the surgery was due to be a bigger one than I had expected. He would perform a total debridement and remove what tissue was left, and proceed to electrocoagulate the vessels that were still causing problems.
I spent a total of two hours in theatre, excluding the prep time, and all I can say is that the experience was one on the traumatic side. At times, I felt like they were treating me as an asleep patient and at other times they spoke to me like I were an infant. People were telling me that "this is normal" and stroking my hair and all sorts, when they knew full well that this was my thirteenth surgery and I wasn't really scared. Prior to my surgeon beginning the actual operation, it took five nurses to remove my dressings, one of whom decided to cut it off on the side of the wound, thereby pressing the scissors right into it. The surgeon had already infiltrated the area with lignocaine and was later going to use a long acting agent, prilocaine, I believe.
Anyway, so after the havoc that was removing the dressings, he began the surgery by applying a tourniquet and stopping the initial bleeding that was caused by the dressing's removal. In total, I believe he used around 100ml of anaesthetic, but it certainly looked like more when I looked over at the swollen mass that was my hand! So he began, using all sorts of knives, needles and scraping utensils, to remove "stuff". I don't really know how much he removed as I haven't seen the wound since pre-op. Two hours of cutting and scraping ensued, ending with a few minutes of electrocoagulation, by which point the anaesthetic was wearing off, resulting in a few mishaps as I flinched and couldn't keep still due to the onset of pain.
So I went back up to the ward, at around 8pm and was told that as long as I ate, drank and passed urine, I could go home. I was exhausted, however, and just wanted to rest. I was dehydrated already, as I hadn't eaten since lunch time on Thursday (the day before) but I was so run down that all I wanted to do was hide away. I can't say that the hospital did the best job at looking after me, for many reasons, but I'll go into that another time. Before I'd eaten, drunk or passed urine though, they were already telling me to leave the next day at around 2pm. Of course I wanted to go home, but home was an hour away on public transport but nonetheless I left anyway. I am doubtful that it was the right decision, as I have not been well at all since.
It has also come to my attention that people who I thought were my friends, are not my true friends and instead are egoistic, self-centred individuals instead. People who talk to me with the sole intention of telling me things and who aren't ready to listen and people who think that they are dealt the worst cards in life, all the time. I am so lucky, however, to have a few very, very close friends who are wonderful to me and I just hope I succeed in being as good to them as they are to me. Sorry it's been an extremely long post, but the last few days have been equally as long, if not longer. Love and hugs to all xxx
I spent a total of two hours in theatre, excluding the prep time, and all I can say is that the experience was one on the traumatic side. At times, I felt like they were treating me as an asleep patient and at other times they spoke to me like I were an infant. People were telling me that "this is normal" and stroking my hair and all sorts, when they knew full well that this was my thirteenth surgery and I wasn't really scared. Prior to my surgeon beginning the actual operation, it took five nurses to remove my dressings, one of whom decided to cut it off on the side of the wound, thereby pressing the scissors right into it. The surgeon had already infiltrated the area with lignocaine and was later going to use a long acting agent, prilocaine, I believe.
Anyway, so after the havoc that was removing the dressings, he began the surgery by applying a tourniquet and stopping the initial bleeding that was caused by the dressing's removal. In total, I believe he used around 100ml of anaesthetic, but it certainly looked like more when I looked over at the swollen mass that was my hand! So he began, using all sorts of knives, needles and scraping utensils, to remove "stuff". I don't really know how much he removed as I haven't seen the wound since pre-op. Two hours of cutting and scraping ensued, ending with a few minutes of electrocoagulation, by which point the anaesthetic was wearing off, resulting in a few mishaps as I flinched and couldn't keep still due to the onset of pain.
So I went back up to the ward, at around 8pm and was told that as long as I ate, drank and passed urine, I could go home. I was exhausted, however, and just wanted to rest. I was dehydrated already, as I hadn't eaten since lunch time on Thursday (the day before) but I was so run down that all I wanted to do was hide away. I can't say that the hospital did the best job at looking after me, for many reasons, but I'll go into that another time. Before I'd eaten, drunk or passed urine though, they were already telling me to leave the next day at around 2pm. Of course I wanted to go home, but home was an hour away on public transport but nonetheless I left anyway. I am doubtful that it was the right decision, as I have not been well at all since.
It has also come to my attention that people who I thought were my friends, are not my true friends and instead are egoistic, self-centred individuals instead. People who talk to me with the sole intention of telling me things and who aren't ready to listen and people who think that they are dealt the worst cards in life, all the time. I am so lucky, however, to have a few very, very close friends who are wonderful to me and I just hope I succeed in being as good to them as they are to me. Sorry it's been an extremely long post, but the last few days have been equally as long, if not longer. Love and hugs to all xxx
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
Sunday 19 August 2012
Big(ish) update!
I got into medical school, as of Thursday! I am SO excited to begin the journey that should take me to a doctor! Though I've decided that maybe I'd prefer to do medical law, but we'll have to see when the time comes since it'll be in five years time at least.
For my "good results", my father has just bought me a MacBook Air! I'm so so happy with it but I still feel like it's much more than I deserve. I will also be getting a new pair of Uggs and Converses in the near future so I am really excited for that too.
On another note, I was at the hospital on Friday and had a chance encounter with a violent and aggressive patient who was aggravated over the lack of receptionist at the desk when he arrived in the department. Even my surgeon was vexed by the man's behaviour which is unusual since my surgeon seems to have the patience of a saint! I am being admitted next week for some surgical procedure or other and will have to call his secretary tomorrow to find out details and ask where I need to go since my surgeon runs theatre lists both in Harley Street as well as Greater London.
I have had some terrible bleeding lately which is the main reason why I haven't been updating as regularly as I want to be. I am getting some bloods done too next week, as I can't get in to my GP for the next three weeks so we will pay privately to have them done when I am admitted next week. I also realised a few days ago that someone has been giving my insurance policy number to their hospital for treatment as I am receiving phantom bills from hospitals and consultants unknown to me... Once again, I have a case on my hands that has come about through no fault of my own and needs sorting. Similarly, but thankfully, my issue with the other private clinic I attended has been sorted. They decided to freeze my account to investigate matters and then adjusted my payments and informed me that things had been wrongly billed. This is still no excuse for their pathetic letter, waffling through reasons why they billed me for wrong things, despite having been told by the nurse himself that I was wrongly billed for monetary reasons!
I have already met a couple of people going to the same medical school as me and I am so excited to attend some of the Freshers' events with them. I'm glad that I have met people beforehand as I would otherwise be more apprehensive than I already am to go to uni!
Anyway sorry for the super long post but I haven't updated in a long time and thought I should! I hope you've all had a gorgeous weekend, just like I have. Lots and lots of love to you all :)
For my "good results", my father has just bought me a MacBook Air! I'm so so happy with it but I still feel like it's much more than I deserve. I will also be getting a new pair of Uggs and Converses in the near future so I am really excited for that too.
On another note, I was at the hospital on Friday and had a chance encounter with a violent and aggressive patient who was aggravated over the lack of receptionist at the desk when he arrived in the department. Even my surgeon was vexed by the man's behaviour which is unusual since my surgeon seems to have the patience of a saint! I am being admitted next week for some surgical procedure or other and will have to call his secretary tomorrow to find out details and ask where I need to go since my surgeon runs theatre lists both in Harley Street as well as Greater London.
I have had some terrible bleeding lately which is the main reason why I haven't been updating as regularly as I want to be. I am getting some bloods done too next week, as I can't get in to my GP for the next three weeks so we will pay privately to have them done when I am admitted next week. I also realised a few days ago that someone has been giving my insurance policy number to their hospital for treatment as I am receiving phantom bills from hospitals and consultants unknown to me... Once again, I have a case on my hands that has come about through no fault of my own and needs sorting. Similarly, but thankfully, my issue with the other private clinic I attended has been sorted. They decided to freeze my account to investigate matters and then adjusted my payments and informed me that things had been wrongly billed. This is still no excuse for their pathetic letter, waffling through reasons why they billed me for wrong things, despite having been told by the nurse himself that I was wrongly billed for monetary reasons!
I have already met a couple of people going to the same medical school as me and I am so excited to attend some of the Freshers' events with them. I'm glad that I have met people beforehand as I would otherwise be more apprehensive than I already am to go to uni!
Anyway sorry for the super long post but I haven't updated in a long time and thought I should! I hope you've all had a gorgeous weekend, just like I have. Lots and lots of love to you all :)
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!
Friday 27 July 2012
Appointment thoughts
Back from the hospital and it didn't go as I'd hoped. My surgeon said that there may still be bits of AVM in my finger but that they're not significant enough to warrant any (more) treatment of any kind. The overgranulation has gotten worse (after an improvement last week) and so we're back to square zero again, so it seems - not even square one, because it's worse than that. Today he said to me that we'd taken "one step forward and two steps back" which is a real shame. He wants the next appointment to be in mid-August (three weeks today) but remember when he said that was when I'd have surgery?
So, I'm a worried JJ about university and about things. I've worked so hard to get the wound in a healthy state and suddenly we're here, and it's worse than before. This obviously means that surgery will be delayed but I want to write to my surgeon tomorrow and ask him a few questions. I don't understand why the granulation tissue can't be removed surgically and then for the new graft to be placed on top. At the moment, it's just hard for things to sink in - on top of that, I've had the sick bug pretty much all week! I'm feeling a bit better today though which is great, but I wish I had two pieces of good news to share!
I was at the hospital from 2pm till 5.30pm again today - most of the time was spent waiting for my surgeon to make his way through the Olympic-caused traffic in the city centre! He arrived at about 3.30pm and I saw him, had my dressings done, and then saw him again. I've been prescribed a new anaesthetic drug which I hope will be helpful at relieving the physical pain of my ulcerated goodness-knows-what (since it's not really AVM)!
I was watching the Olympic opening ceremony earlier, and although Daniel Craig's appearance is rather cheesy (among many other acts of cheesiness), I can't tell if I'm annoyed or shocked at Great Ormond Street's appearance. I would have thought that the hospital has enough recognition, both on a national and international scale, that this wondrous opportunity would be given to a lower-profiled charity. Don't get me wrong, because I know GOSH does some great stuff, but it just goes to show how many people are just swept under the rug that is the NHS. Sometimes, I overanalyse things, but if I were ten years older or younger than I am now, maybe I would get the treatment and help I need for a better quality of life. If I were little, people would see the injustice of a "suffering child" and as an adult, people would be more fearing and more willing to act - if I had a (respectable) job and family of my own, who knows where I'd be now.
Maybe this is self-pity, and if so, I apologise because it wasn't the intention. Once again, the cliché proves true: money cannot buy happiness, health and love.
So, I'm a worried JJ about university and about things. I've worked so hard to get the wound in a healthy state and suddenly we're here, and it's worse than before. This obviously means that surgery will be delayed but I want to write to my surgeon tomorrow and ask him a few questions. I don't understand why the granulation tissue can't be removed surgically and then for the new graft to be placed on top. At the moment, it's just hard for things to sink in - on top of that, I've had the sick bug pretty much all week! I'm feeling a bit better today though which is great, but I wish I had two pieces of good news to share!
I was at the hospital from 2pm till 5.30pm again today - most of the time was spent waiting for my surgeon to make his way through the Olympic-caused traffic in the city centre! He arrived at about 3.30pm and I saw him, had my dressings done, and then saw him again. I've been prescribed a new anaesthetic drug which I hope will be helpful at relieving the physical pain of my ulcerated goodness-knows-what (since it's not really AVM)!
I was watching the Olympic opening ceremony earlier, and although Daniel Craig's appearance is rather cheesy (among many other acts of cheesiness), I can't tell if I'm annoyed or shocked at Great Ormond Street's appearance. I would have thought that the hospital has enough recognition, both on a national and international scale, that this wondrous opportunity would be given to a lower-profiled charity. Don't get me wrong, because I know GOSH does some great stuff, but it just goes to show how many people are just swept under the rug that is the NHS. Sometimes, I overanalyse things, but if I were ten years older or younger than I am now, maybe I would get the treatment and help I need for a better quality of life. If I were little, people would see the injustice of a "suffering child" and as an adult, people would be more fearing and more willing to act - if I had a (respectable) job and family of my own, who knows where I'd be now.
Maybe this is self-pity, and if so, I apologise because it wasn't the intention. Once again, the cliché proves true: money cannot buy happiness, health and love.
Wednesday 25 July 2012
Vascular clinic appointment
I totally forgot to write yesterday! I was trying to make this month a "blog-a-day" month, just for fun, but I've obviously failed this time. I was, and am ill with the sick bug - or at least something like the sick bug. I had to go to the optician this morning and almost couldn't leave the house, but we made it there and back! I received my parcel too, of medicines and the protein shakes that I've been told to drink. My mother bought me some tops today, four vests and two Disney t-shirts, which I absolutely love!
I have, however, lost two pounds again. I'm just totally overwhelmed at what has come of the dietitian appointment and don't know whether I can take it all on so quickly. I am seeing my orthopaedic surgeon on Friday again to let him know how the dietetics appointment went and to ask him a few further questions.
Yesterday, I had my appointment with my vascular surgeon. He said that it was normal for people to live with AVM cells present and despite it causing me problems, he declined to send me for any sort of scans. I guess it would just be nicer to know what's there, rather than dealing with something I know nothing about. However, we digressed from "medical talk" and proceeded to have a rather in-depth conversation about classical music... He wants to see me in a month's time, but there's only little chance that this will happen. He was telling me how wonderful the wounds looked, despite my orthopaedic surgeon telling me otherwise - furthermore, I can see for myself that the wounds are bigger and are bleeding more (but this is evidently no cause for concern...). While I very much appreciate his optimism, in a situation like this, I'd be grateful for some realism too. It's not the best confidence boost when you feel rubbish and someone tells you that this is the best it's going to get for some time still!
I was very slightly upset after yesterday's appointment but I'm sure that with some encouragement from my orthopaedic surgeon, I'll be easily appeased and feel like I'm on track again. Hopefully the sick bug will be over with, but it'll definitely take its toll on my body. The weather, again, has been lovely, but I'm still yet to go out in my shorts and vest this summer! Don't think this "heatwave" is supposed to last very long, unfortunately!
I have, however, lost two pounds again. I'm just totally overwhelmed at what has come of the dietitian appointment and don't know whether I can take it all on so quickly. I am seeing my orthopaedic surgeon on Friday again to let him know how the dietetics appointment went and to ask him a few further questions.
Yesterday, I had my appointment with my vascular surgeon. He said that it was normal for people to live with AVM cells present and despite it causing me problems, he declined to send me for any sort of scans. I guess it would just be nicer to know what's there, rather than dealing with something I know nothing about. However, we digressed from "medical talk" and proceeded to have a rather in-depth conversation about classical music... He wants to see me in a month's time, but there's only little chance that this will happen. He was telling me how wonderful the wounds looked, despite my orthopaedic surgeon telling me otherwise - furthermore, I can see for myself that the wounds are bigger and are bleeding more (but this is evidently no cause for concern...). While I very much appreciate his optimism, in a situation like this, I'd be grateful for some realism too. It's not the best confidence boost when you feel rubbish and someone tells you that this is the best it's going to get for some time still!
I was very slightly upset after yesterday's appointment but I'm sure that with some encouragement from my orthopaedic surgeon, I'll be easily appeased and feel like I'm on track again. Hopefully the sick bug will be over with, but it'll definitely take its toll on my body. The weather, again, has been lovely, but I'm still yet to go out in my shorts and vest this summer! Don't think this "heatwave" is supposed to last very long, unfortunately!
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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