Difficult decisions

"Sometimes, the hardest thing and the right thing are the same." ~The Fray

I love that quote, even though I wish it didn't refer to me. So much has happened recently - I had to make the difficult decision to go back and see the evil consultant mentioned in my last post. I had to see him privately, because time was running out and he was offering things that would help. The appointment was scheduled for Friday, but many phonecalls to and from my current surgeons' offices showed me that I really didn't trust this man, even if he could help. It played on my mind that he was adamant to be the only one involved, and I was scared that things would go wrong and he would refuse input from anyone else and would disallow me to see my old surgeons for advice. I just wouldn't want to feel obliged to him just because he's treating me.

Come Thursday, and I found a new consultant. I phoned up my orthopaedic surgeon's office, and told her about this new surgeon, and she replied by telling me that my vascular surgeon's secretary had recommended the very same person! I called my vascular surgeon's secretary, who informed me that her relative had seen the same person I'd found, and that he was lovely. She called up the new surgeon's office, and I got an appointment to see him yesterday (Friday) before his clinic started.

Turns out that he was born and had grown up in my area, and his sister had attended the same school as me. Again, he said he would treat me like a colleague, which I was so relieved about. No more of this chauvinistic, self-important approach, like the other surgeon had adopted. The bone erosion has progressed so much in the last few weeks, and the X-rays are redundant now because of how much more damage there is. I'm going to be admitted to hospital next week, and will be having surgery to debride the infectious bone and soft tissue. I think I'll be getting an implant or fixator of some sort to hold the bones together.

I can't believe how fast everything's moved on, and I don't think I'm ready for this. I know, full well, that this could make everything a lot worse. But if I do nothing, it'll get worse by itself - the surgery would, and could just hasten the process. Factor in my clotting disorders (just realised the pun there...) and my Ehlers-Danlos Syndrome and the fact that I'm getting so unhealthy from taking so many antibiotics, and I'm just not sure how I'll get through this.

Nothing more than bad bedside manner

Today was a bit of a strange day for me... I had my first appointment with the "new" consultant at the hospital where my haemophilia doctors are based. Needless to say, it was a very poor experience, especially when you compare it with the excellence of the haemophilia centre. Hands down, the haemophilia clinic is probably the best run clinic I've ever been to, with some of the best doctors I've ever seen. And it's all under the NHS, unlike all my other doctors. I was transferred there from the same consultant privately, as the NHS has more extensive services and better back-up for people with bleeding disorders.

The new plastic surgeon, however, was awful. On the outside, he was smiley, friendly and kind, but it soon transpired that this was more than an inaccurate reflection of his personality. I don't think he fully understood the difficulty I am facing with disengaging with my private consultants and moving to the NHS. He didn't appreciate the slowness of the transition, and the fact that I can't just move on with a clean break straight away. Especially now, when there are added complications that must be addressed in good time. It's hard to make such a big change without time.

Whilst I can understand where he's coming from, he told me right at the start that he wasn't going to treat me if I was seeing the other consultant. He wasn't even going to come up with a plan nor tell me what ideas he had, if any. This, I thought, was appalling. How is it so, that he can write me off straight away, without a second thought? Furthermore, the way he treated me was worse. He wanted to see the wound that was left - which was totally fine by me, until he decided to take the scissors and cut right about the wound. I couldn't help but flinch; his response to which was to chastise me that he was just cutting the dressing. When you've got a bone infection and a degrading joint, the slightest touches and movements hurt. I didn't mind the pain, and I didn't recoil, but it was his reaction that disgusted me.

He proceeded to tell me that he was going to apply silver nitrate to the wound. Not something I particularly like, but I kept quiet nonetheless. He left the room, while I gathered my belongings, only to find that he'd gone off in another direction, out of sight, when I came out. I was left standing in the waiting area for a good few minutes. When he eventually found me and took me to be silver nitrate-d, the process hurt me so much that tears just welled up in my eyes. He saw this, and remarked that even his paediatric patients let him do this without it hurting. Now, I know he's been there and seen it all, but it was genuinely painful and I was, again, appalled at his words. However, the worst was yet to come. A nurse came over, and instead of being discreet, he exclaimed to the nurse, "Look, she's upset now!".

I just couldn't believe the whole experience. After that, he took me back to the waiting area and demanded that I "sit there" while he had a look at my MRI. Five minutes later, he asked me in, made a few comments and decided that I wasn't worth seeing again since I hadn't fully cut off connections with the private side.

All in all, I can definitely say I won't be going back. Not because he's not a good clinical scientist. But because his bedside manner and treatment of patients was so very poor that I can't stand being insulted and humiliated like that. Not only did he upset me, but he commented that my vascular surgeon "wouldn't care about my hand, and just the vessels" in an extremely derogatory way. I'm not going to pretend that everything's been plain sailing, but I know for a fact that my vascular surgeon has always had my best interests at heart, despite being a little bit slap-dash at times. This is no way for the new surgeon to behave, not least to belittle my other doctors. He even mentioned that I've been wasting my time over the past few years. Thanks, but no thanks.

Beginning of the beginning

This week has been filled with visits to the new hospital... I'm already a haemophilia patient at this new place, so it wasn't a totally novel experience for me. I met with the new surgeons, although that didn't turn out to be as successful as I'd thought it would be. My file was specifically put in the consultant's pile, as per request of the other doctors I'd seen, and the haematologists. However, another pushy patient insisted on getting her file switched with mine, so lo and behold, I did *not* get to meet the consultant himself. I saw the registrar instead (Thursday), had my MRI on Friday, and still getting over the to-ing and fro-ing today.

The new hospital is at least 90 minutes from my home, which makes each visit a day trip. I was disappointed, to say the least, that a bossy, self-righteous woman got me pushed out of the queue, despite the doctors' requests that I saw the consultant himself. I suppose the clinic was busy, and nobody there knew me in person, so I had to swallow it and accept the wasted day trip.

Friday's MRI was a challenge in itself... Not least because it meant waking up at 6.30am to arrive at the hospital for 8.50am, but it took three people to put a cannula in the only patent vein I seem to have left! I don't know whether it's just me, but the ONE part of myself I can't stand people poking at is my elbow crease, like *right* in the crease - probably because of previous bad experience and skin graft harvest, but still!

They did manage to cannulate me in the end, and inject the contrast. I hate MRIs, because for starters I'm terrible at keeping still without getting those irritating itches, and second of all, the noise is so intermittent that when you think it's all over, it starts again and you look like you've just had an electric shock. Yesterday's scan took about an hour, and made me dizzy from top to bottom at the end... Getting up from the table, I was stumbling and hoping nobody would see, when the radiographer asked if I was alright. What's worse is that he then commented about how being in the scanner does make you very disorientated in a slightly awkward way, which of course made me feel like such a pathetic fool!!!

In any case, I'm back there at the beginning of May, and at the haemophilia clinic in June. Finals are coming around too fast, and I'm still lazing around; much to my regret, I'll soon realise!

Moving on...

10th April 2013... I would never have anticipated that one appointment would bring so many changes to my care and probably to my life. I was transferred to the NHS by my haemophilia consultant as I have a bleeding disorder that cannot be fully looked after in the private sector.

When I arrived at the clinic on, my usual consultant hadn't yet arrived, and my notes were instead picked up by a different consultant (who turns out to be one of my lecturers), who told me he'd be with me shortly. When I was called in, we talked about my surgery and about medical school, when someone knocked at the door. I was surprised to see my usual consultant in the doorway, who noticed me straight away and sat down to chat. The three of us discussed what had happened during my previous admissions, which led my doctors to decide that I wasn't adequately covered for the bleeding problem. They decided that I should be moved out of the private sector, and into the NHS, to receive all my care at the haemophilia centre, so if I needed any more surgery, they could co-ordinate things from the haemostasis point of view.

They said it'd be around a month until I got to see the plastic surgeon, which felt like such a long time since appointments can be booked for the same week in the private sector. However, I was lucky that on my way home, my consultant phoned to tell me that the plastics team would be able to see me the following day. Unfortunately, I had a mandatory GP placement to attend and a public health presentation to make, but my consultant insisted that I attend the appointment and therefore contacted the placement directly to inform them of the situation. 

I saw the new doctors on the Thursday, who said that I should also be seen by the congenital hand anomalies clinic, and that I'm probably going to need another operation. My appointment with the new clinic is on Thursday. It is with mixed feelings that I move on, but I know that I can always see my old surgeons any time, given the incentive that the private sector is run on. I'm being treated like a colleague, and have been told on more than one occasion that I should have expected much more from the private sector than I got. Haemophilia have really looked after me so well and treated me so much better than I've been treated by so many people in the past. I can't wait to begin my new journey, but after four years, it's going to be hard to move on.

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.

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!

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!

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. 

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...

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!

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.