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.
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