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Posts Tagged ‘Hospital Appointment’

This week is a busy one for me, everything seems to be starting all at once!  I had my first appointment with the Physiotherapy team at the local hospital this afternoon; this is on top of the physio exercises that I am keeping up with at home. Feeling brave / stupid, I thought I’d use my crutches to walk to the department, but it turned out to be miles of long corridors away and I was a bit (okay a lot!) worn out by the time I got there. I didn’t make the same mistake on the way back though I tell you! Not to mention we found there was a direct entrance to the department from a different car park, d’oh.

I’d barely sat down in the waiting room before my name was called and I was taken through to a cubicle for my initial assessment. The Physio was lovely; she had taken the time to look up Still’s Disease so that she could be better informed as to the best way to approach my rehabilitation. After some further questions into my background history and this particular flare up, she checked each joint’s mobility: my neck is almost normal and I think that is thanks to the home exercises as a large chunk of those are neck-based; my arms are a lot better than they were, but to her must have seemed quite bad because she said we needed to work on the range of movement I have, especially lifting/raising; my knees are moving better but there is a lot of muscle weakness and wastage in my upper legs, which is going to take a long time to recover; my hips, again, seem much better to me, but she said they were quite restricted mobility and strength-wise.  Assessing my walking on the crutches, she commented that I looked to be really struggling and quite wobbly; she suggested I might be better in a wheelchair for now, or using the zimmer frame for a while longer, but I told her I was managing.

I felt a little bit disappointed that her impression was that I was still in a bad way; but then she can’t compare to how I was when I came out of hospital and just how far I’ve come since then. At least I have that knowledge and the belief that some of this improvement is down to keeping up with the physio at home, so this next level of physio should help even more. Walking-wise, I have been taking things very slowly and it has taken a long time to get to this point; it’s only the past week or so that I have moved onto using the crutches as much as I have. Maybe I’m being stubborn, but I think it would be a shame to go back to the wheelchair and zimmer. I admit my legs are wobbly right now, but I’m sure it’s just due to doing so much this week; I’ll give myself a break tomorrow and take it easier at every opportunity I have.

Anyway, back to the appointment. The Physio decided that, because I’m struggling so much with my mobility ‘on land’ (ahoy!) right now, the best thing to start with would be Hydrotherapy, which is exactly what I’d been hoping for.  She invited me to a class that runs specifically for women with Rheumatological conditions and introduced me to the physio that runs it. It sounds like quite a large Hydrotherapy pool (as opposed to my old Hydro’s ‘tin bath’), and each person gets their own guidance and exercise regime while you’re in there. She explained that her aim would be to build the strength in my legs and get me to a point where I could walk unassisted in the water, which is easier than on land. Once I reach this point, then I can return to the regular physio to carry on this strength-building and start the process of trying to walk unassisted on land, using parallel bars etc.

Maybe I’ve been a bit naive, but I wasn’t expecting my recovery to be such a long and intense process. I’m trying to think back to the previous times I’ve had to get myself walking again and I don’t remember it being so hard. Maybe it’s because I was younger then, still a child really, and so I naturally bounced back quicker? But my main suspicion is that I was just stronger over all; that over time I have let myself waste away too much and become weaker than I should have been, meaning my body wasn’t prepared for such a shock to the system. All the more reason to make sure I continue to build myself back up now and after my recovery – the stronger our bodies, the easier they can fight all this I reckon.

She seemed quite positive I would at least get back on my feet eventually, which I guess I should be grateful for.  I am a bit worried about how I’ll manage during our trip to Dublin next week, but I will manage somehow – where there’s a will there’s a way and all that.  I start the Hydrotherapy class on Monday afternoon and I’m really looking forward to it, then I’ll be able to take some of the exercises with me to the pool on Tuesday and relax for the rest of the week.

We stopped at one of the local farm cafes on the way home, for a hot drink and a slice of cake, as a bit of a treat. Since the sun was still out and it was quite warm, we sat at a little table outside and spent an hour watching the agricultural world go by – so peaceful. I’ve often thought I’d have been quite happy growing up on a farm and one day I’d love to have a house with enough land to keep a few animals.

It’s good to look to future and dream :),

L

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So, December flew by and it was infusion time again. I woke up earlier than normal to get to the hospital on time and wasn’t feeling great at all. It took a lot of help and determination to get myself into the car as I was stiff, in pain and as weak as a kitten.

We arrived on the ward and the nurses noticed I was struggling straight away; I don’t even remember them fitting the cannula or taking my blood, but while taking my observations the Sister asked me how long I’d been feeling this way. I told her everything, she asked if I was feeling breathless and I explained that it wasn’t breathlessness exactly but a sense that I might forget to breathe if I didn’t make a conscious effort. I’m sure others have felt this too at times. She was obviously concerned and called my Rheumy straight away.

It wasn’t long after, that he came to see me; he asked if I felt awful in the usual way and I explained mainly as a Still’s flare but that I’d also experienced muscle weakness comparable to when my diagnosis was Dermatomysositis at 14. He examined my joints and said that he could feel the heat from them through my clothes, particularly my elbow and knee, which he injected with cortisone. Since there was no reason not to take Ciclosporin with the Tocilizumab and I’d responded well to it in the past, he decided to take me off Methotrexate and put me back on Ciclosporin at 300mg a day.

He also said he had spoken to a Paediatric Still’s specialist called Dr Helen Foster, who has lots of experience with Tocilizumab and had told him that it is not unusual for there to be an interval between test results and symptoms improving.  So I am still hopeful that this could be the winning combination and if I ever feel as good as my inflammation markers currently are (ESR of 8 and CRP less than 1 – both results the best we have ever seen for me) then I could end up feeling pretty fantastic in the near future. We just have to keep an eye on some of my other blood test results, as my WBC is low at 3.5 and neutrophils at 1.5. I don’t want a repeat of last year when Imuran caused Neutropenia and left me in an isolation room in hospital. Hopefully, this time round it has been the Methotrexate and not the Tocilizumab.

The last thing that we discussed was my recent neck pain and current hip trouble, which is agony. He had barely moved my right hip before I started yelping out in pain. It could be inflammation, or joint damage from the Still’s but he also mentioned something called Avascular Necrosis, which is when the bone tissue dies and can be caused by prolonged use of steroids. It has been fifteen years on Prednisolone without a break for me, plus the joint injections and occassional IV, so he sent me off for xrays of the hips and neck.

I was wheeled down to the xray department, where I struggled getting changed into a gown, getting up from lying on my back after the hip xrays and standing up for the neck ones. It made me realise just how much I have been relying on other people and on minimising what I do. Once we were back on the ward, I had a nap while we waited for the Tocilizumab. The infusion arrived just before 5.00pm and takes an hour to go through, it makes me feel warm but apart from that I have no reaction to the infusion itself. We left the hospital just after 6pm with my next appointment booked for the 2nd February, and knowing that my Rheumy would get in touch in between with my xray results.

So now I’m pooped and have that slightly overwhelmed feeling I get when having to take so much information in from hospital visits. I’ve probably said it before, but it makes things feel so much more real on days like today.

I’ll be good after a sleep,

L

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It’s about twelve weeks since I had my Hidradenitis surgery in August and time to see the surgeon again, for a check up on the wound and also the second site, which may need similar surgery.

We arrived at the hospital in plenty of time for my appointment, but it was only after a two hour wait that I finally went in and saw the surgeon.  He was pleased with how my wound had healed (almost completely now) and as I suspected, felt that the second site would benefit from the same procedure as it is already creating tough scar tissue around the tracts, which is uncomfortable, an infection risk and also unsightly.  Okay, surgery does leave a scar but I’m surprised at how neat the first one has turned out and hopefully it will fade in time, meaning that’s much preferable to what was there previously. I just hope he does an equally neat job this time round.

I’m not exactly looking forward to having an open wound again, going through the daily clinic visits and so on, but it’s better to get it out of the way all in one go rather than put it off; plus, if I did put it off, it would probably need more extensive surgery. So, I read through the consent form and will receive a pre-op assessment date in the post shortly. I hope it’s after Christmas at least.

For those that are interested in how these wounds heal, here are a couple of more recent photographs.

At 10 weeks and 12 weeks

You can compare these pictures to those taken at three and six weeks as well as a list of related posts, here.

L

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At my last Orencia infusion on the 15th September, Dr S and I came to the conclusion that it wasn’t helping the majority of my symptoms, plus my bloodwork was either getting worse or staying the same. The decision was made to switch to Tocilizumab (RoActemra) and I had my first infusion today.

It’s been an extremely long and tiring day. I arrived on the ward only to find it extremely busy with the chemo clinic, so there wasn’t a room available for me. Instead I had to sit in the waiting area, having the nurses take my observations (BP, Temp, Pulse rate etc) from there; thankfully, we managed to hijack a room to fit my cannula, take my bloodwork and then, later, to talk with the doctor but it seemed an even longer wait out there.

My consultant was away this week so I saw one of his registrars, since it was the first time I had received the drug. He went through things really well and I had a good chat to him about further treatment options; it’s always interesting to hear a different point of view. Firstly, he explained why Tocilizumab was a good treatment choice for me (Commence Science Lesson 1 as understood by yours truly):

When we have flu one of the things that makes us feel so unwell is an excess of a cytokine called IL-6. This cytokine plays a role in the production of CRP, which is also an inflammation marker in conditions such as Rheumatoid Arthritis and Still’s Disease. Tocilizumab is an Il-6 Inhibitor, which in layman’s terms means it ‘mops up’ any excess Il-6, preventing CRP production. Because my CRP levels are consistently high when the Still’s Disease is active, it suggests that I am producing too much Il-6, and so there should be plenty for the Tocilizumab to ‘mop up’, in theory making me feel better.

This sounds very promising but, of course, there is no guarantee.  He went on to say that if it didn’t work he felt it was good idea to return to the anti-tnf drugs because I had a really good response to Enbrel for a number of years (and so to Science Lesson 2).  The reason that it became less effective is because my body gradually started to produce antibodies against it, which is why a person usually takes Methotrexate alongside Enbrel and other anti-tnf – to stop the antibodies forming rather than to treat the disease.

I was on Cyclosporin alongside Enbrel, which is another immunosuppressant drug, but perhaps it didn’t do an adequate job preventing antibody production; then again, it did a good job keeping things at bay. He suggests trying one of the other anti-tnfs alongside Methotrexate, although he also mentioned another drug similar to Cyclosporin, called Tacrilomus, which I’ve only heard a bit about. This is the only oral DMARD that I haven’t tried and that isn’t a nice thought.

Anyway, after speaking with the registrar and a bit more waiting, it was eventually time to be hooked up to the Tocilizumab. Things went through fine for the first half an hour and I was happily chatting away to one of the nurses when I suddenly came over all lightheaded, hot and turned a fetching shade of red. The nurse went to fetch another nurse that looks after me and they took my obs again – BP was lower, temp higher and pulse rate 148 but within 10 minutes I started to feel better and the results returned to normal.

We went ahead with the whole infusion, which took an hour in total, and then I stayed for an hour afterwards to make sure I was okay. I’m still not sure what caused such a reaction but I did have a bit of a ‘moment’ during my first Orencia infusion, only not quite as dramatic. My heart rate was already up a bit when I arrived today (125) and I haven’t been feeling too good all week, but there have been no signs of infection in my wound or anywhere else.  Still, maybe there was something underlying that contributed to it and it’ll be a one off.

Unlike with Orencia, I am going straight into having Tocilizumab every four weeks and my next appointment is November 10th. The literature says that some people feel a benefit after only two weeks, so here’s hoping!

L

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Of all the mornings to wake up with the joints flaring, it had to be today, when I had an appointment to see the surgeon for my post-op follow up.  It was such a struggle to get out of bed and ready but I told myself that it would be a quick appointment and that I’d be home resting before long.

Sod’s Law says that I had to be wrong.  We sat in the hospital waiting room for almost an hour and a half, with me so uncomfortable that I couldn’t sit still but struggled to move at the same time.  It took all my effort to stay and not go home; the only reason I did was because I knew that my wound needed redressing and I was hoping to get some feedback.

Again, I was wrong. When I was called in to see the doctor, the nurse said – ‘so you’ve had a little bit of skin removed have you?’  I was a bit confused, since it was more than a ‘bit of skin’ that I’d had removed, but I didn’t want to make too much of it in case they thought I was dramatic. Then the surgeon (not the one that did the actual surgery mind..) asked to see the wound; I made my way over to the bed but he stopped me and signalled for me to just er drop them and show him from where I was sitting.

I tried to explain it had a dressing over the top and he seemed surprised; ‘why are you still using dressings? It should be fine without dressings now’ he said, as the nurse removed them for me, revealing my blood-soaked, packed wound. Needless to say, I was a lot confused!

‘Oh’ he says. ‘That wasn’t what I was expecting’.

Turns out that whatever was written up in my notes, doesn’t quite do justice to my lovely wound and that there was nothing he could tell me for the time being, since it would take a few more weeks to heal properly. Talk about lack of communication!  The whole thing would have been a waste of time if I hadn’t had the second Hidradenitis site to show him, which formed the week prior to my surgery. He took a swab because there was some crepitus (crackling), suggesting an anaerobic infection, and told me that I would probably need the same surgery on that side too. Wonderful.

I have another appointment for a ‘proper’ post-op assessment in six weeks time.

One good thing did come of it though – I was given permission to shower again, woo hoo. I can finally throw the flannels away and have a nice long, hot soak, which I missed greatly!

L

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I had a phone call the other day to offer me a cancellation slot for my Hidradenitis surgery on Friday; I need at least a week’s course of antibiotics beforehand though, so couldn’t accept, but she told me to go for a pre-op assessment today anyway.

It took a while to go through my medical history and treatment list, then I had the usual BP and chest checks, followed by an ECG and then… another blood test.  I hadn’t had much notice so was only able to try a few of the tips I posted the other day; however, I asked the phlebotomist if she could take blood from somewhere other than my ‘infusion vein’ and after two attempts she managed to find another that will work for bloodtests but isn’t suitable for cannulation. So we managed to get enough blood and give my overused vein a break, phew!

My procedure is now booked for the 22nd August, which is pretty soon but at least gives me time to heal before our trip to New York. I am also relieved that someone is finally doing something about it as I’ve been putting up with this for over a year now and, as well as being sore, it is annoying to have to think about it all the time.  The problem is, I seem to have developed another swelling around the glands on the opposite side and a smaller one next to the first; I really hope that these are like earlier abscesses I experienced and heal themselves.

Unfortunately, the specialist feels that this is all down to being on immuno-suppressant drugs for so long and there’s not much I can do about that. I’ll just have to hope that with the antibiotics and surgery there’ll be no more infection left to reinfect and that it is curable.  I’ve been taking it all a bit too lightly, so maybe I should look into more thoroughly too; prevention is better than cure after all.

Off to see the GP again tomorrow to reassess pain relief and pick up the antibiotics.

Until then, good night.

L

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Perhaps my bubble is about to burst...?

After everything that happened at the hospital yesterday, I was feeling pretty confused and disheartened, plus I was absolutely exhausted.  Hospital visits do this to me – so much energy is put into preparing myself for them: thinking of the things I need to discuss, prioritising a host of symptoms, making notes and then trying to make sure I express everything that I need to clearly… and then in the appointment itself, taking in what the consultant says, absorbing and digesting it, understanding what it means for me and thinking about the consequences of any decisions on the present and the future. 

When I’m flaring, I go to these appointments with a sense of anticipation, that maybe my doctor will have a new solution, a miracle up his sleeve that will make me feel better – something solid I can take away with me there and then.  Although, realistically, I know that this isn’t how the game of treating Still’s Disease goes – it’s more like snakes and ladders, just as you think you’re getting somewhere, you get sent sliding back down to the bottom – so perhaps I’m setting myself up for disappointment each time. We try to keep our discussions positive, but at the same time you can’t shake the feeling of uncertainty about it all and I always leave feeling like I’ve been through the wringer, with my mind whirling and body exhausted.

However, I woke up this morning feeling more like myself, determined not to let this latest setback get me down; yes, the things we discussed were worrying and confusing but at least I was feeling more able to do certain things and surely I need to make the most of that even if I can’t explain it. Maybe the bloodwork is just taking its time catching up, I don’t know, but I was happy just to carry on and know that my doctors were keeping an eye on things.

Morning and early afternoon passed by fine; I’d managed to get a few things done when I noticed I was getting quite a bit more pain in certain joints.  Half an hour later, I felt it was bad enough to require an additional dose of painkillers (I try and stick to 2 doses a day) and as my heart was racing too (156 is high even for me), I decided to have a bit of a nap.  I must have dozed off because it was teatime when I woke up, but I quickly realised that the pain had gone even worse, so much so I couldn’t lift my head from the pillow or move my arms from under the duvet, every inch of my body seemed to burn or throb with pain.

In the end, I needed help to even sit up in the bed and later to hobble about. My boyfriend’s parents were understanding, but I felt embarrassed and ashamed that they had to see me so helpless, especially when it came out of the blue. How can I explain it to them, if I don’t understand it myself? There are a number of thoughts floating round my head right now – could it just be that I’ve been building up for another Still’s flare these past few weeks, has the Methotrexate effected me in some way or maybe even the Orenia? Or has my mind been playing tricks on me all this time?

Do you think it’s possible to think yourself better, even if you’re not?  I was soo looking forward to starting Orencia that maybe I built my hopes up so much that I believed it was going to help and expected nothing less.  Perhaps I imagined the tipsiness, the tingling and the new strength and energy, getting through the wedding weekend on optimism and willpower alone. What if it has just been a case of mind over matter so far, and now that I’ve been faced with the reality of my bloodwork the illusion is shattered and it’s just not enough to keep the physical things away anymore..?

There are no easy answers. All I know is that I haven’t hurt like this for a while and I’m at a total loss what to do.

L

Ps. Most of this post was written the morning after, I was just too sore to even type last night.

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