This is my Wegener's granulomatosis [WG] story. My symptoms started in
December 2006 [age 25], I was finally diagnosed in October 2007 and I went into
my first quiet phase in April 2008. Now that the WG is quiet we are
working to fix the problems I am left with.
WG is a auto-immune condition and a form of vasculitis, this means that my immune system started attacking healthy body tissue and my blood vessels are inflamed. Treatment is steroids and immuno-suppression - both of which come with a whole host of side-effects. Time of writing 3rd July. I keep forgetting to update this page! I will put a note in my calendar to update at the beginning of every month. My bronchoscopy at the end of April showed that my right intermediate bronchi had narrowed to just over 1mm. A dilation was scheduled for 8th June. The dilation technique was different since it was in my lung rather than my throat. Apparently the stretching is usually done by moving 'washers' [this isn't it, but it is the nearest vocabulary I can think of] up and down to force the scar tissue back. This time they used a balloon so the pressure is going to the sides instead. He managed to open that spot 4mm. I'm going back in again on 5th July. Hopefully we'll get to 8 or even 10mm. My steroid taper is going well and to schedule; I'm now on 1mg on Sunday, Tuesday, Wednesday, Friday. Seem to be coping fine so far. The ear infection from hell has supposedly gone as of end of June. I had weeks of drops/creams/gels and at the last appointment they said it all looked good. I'm not sure, my ears are still really itchy. I'm going to see my ENT on the 22nd to confirm. Also want him to double check sinuses are behaving. At the beginning of May, I got my DLA results - lower care component and no mobility - same award I had before. I'm just relieved it is over now, this is an indefinite award so I won't have to go through this again unless my condition changes. May 18 I got to see the plastic surgeon about my nose. He is optimistic that he can repair my saddle nose. He will take two tiny slices of my rib cartridge, one slice will become the bridge anchored to the bone I still have. The other slice will be anchored above my teeth and the two slices will be connected at my nose tip. They are not going to close the hole in my septum. The only way to do it would be to take some skin from my face and I'd rather not do that. On 7th June, Kara won an eBay auction for a set of Alber e-Motion powered wheelchair wheels. These are incredible wheels - they fit to any standard wheelchair and exaggerate user movements. So I push a little bit and it moves forward a lot. One can go uphill, up curbs and about 6km per hour. We got them 70% off retail price!! We just have to get me a wheelchair now. We weren't planning on having these wheels so soon so we're not prepared yet! I have asked my GP for a referral to wheelchair services and I'm going to hopefully arrange to visit a very nice wheelchair company to test drive some chairs at the end of the month. On 14th June I saw my vasculitis doctor and he decided since my steroid taper was going so well and since I'd been on the azathioprine for over three years it was worth trying to taper it too. So as of the 15th I am on 100mg. I was okay until the 18th when my teeth started hurting. This is my first sign that the WG is doing something. It was strange because it was fine when I woke up and as the day worn on, but between 8 and 9pm it would hurt again. I finally realised that this was just me reacting to the lowered dose. Thankfully, by that Wednesday the pain stopped and I think I'm okay. I've been really tired since, but I'm hoping I'll adjust to that too. My pattern making class finished next week, we've done bodices and now we're on trousers. There's going to be an advanced class starting in September and I'm going to do it. Really enjoying designing the clothes. The Scrabble club and reading group are both still ongoing.
Time of writing 18th March. I finished therapy, including my three month follow-up on 25th February. She wrote a lovely supporting letter for me to include with my DLA form. It is hard to imagine that I'll probably never see her again. What an amazing gift though, to have such peace and contentment come into my life because of this stranger. Cannot express how incredibly grateful I am to have had her help, encouragement, support and unbiased point of view. I finally posted the DLA form this week. It was incredibly difficult to fill out. Having to examine the minutia of my day-to-day life when I spend so much time trying to pretend that nothing is wrong was horrible. The ear infections I got in August 2010 never properly cleared up. I had more drops that I can count. Finally, I had a culture done, turned out to be a fungal infection. New drops! I get to use these ones for a month! I'm almost two weeks into the four now. I had a much better lung function test. My air isn't moving better, but I am fitter. I am due a bronchoscopy this month - don't know when yet. I saw vasculitis people too. I am being referred to the plastic surgeon to get my saddle nose repaired! So excited. I am also going to try to taper the steroids again. I have been on 2mg for over a year now. It will take me 14 months to get off them all being well. I start by taking 1mg on Sundays for a month, then 1mg on Wednesdays and add one day of the week until I am on 1mg across the board. Then I stop taking them one day each week until I am off. Happily, it turns out that I have not been put into early menopause, I have had three periods in the last three months. I am still playing Scrabble every week [love it], hosting book club monthly and the pattern making class is excellent. I've just finished knitting a hat/scarf for my brother-in-law too. Time of writing 17th March. My good [for me] health continued through November. First weekend in December, I caught a cold and I was scared I'd have to postpone my dilation on the 9th. Thankfully, it cleared up just in time. I had the usual work on my throat: cut off scar tissue with laser, dilate and injections of mitomycin [aka anti-scar-tissue-spray]. Recovery went well and I was on track to see many good things. Then on Christmas day I developed a nasty bug that hung around through January. I had a lung function test with fairly poor results during that. In December I got my Disability Living Allowance [DLA] form and started filling it out. I finished my sign language class and I am now qualified to level one! Kara is taking the class now, being able to talk with her without hearing aids is wonderful. Time of writing 25th October. I'm finally recovered fully from the pneumonia and the dilation. I've started cleaning again. I'm exercising more [swimming once so far, hoping to go tomorrow]. I'm cooking many yummy things. I'm fitter than I was 1.5 years ago according to my last lung function walking test. I managed to get to level 12 [previously got to level 8]. My air isn't moving as quickly as before, my lung capacity remains the same. I should be getting a date for my next dilation within the month. I'm pretty sure that I've just had my penultimate therapy session. There may be one more after that. Because of the long break and how actively sick I was my therapist expected me to come back a bit... broken. I wasn't. I wasn't as frustrated or angry. I wasn't so bitter. I have come to accept and work within my limitations. I've even begun lowering my antidepressant. I've been on 40mg for about two years I think. I'm on 30mg for another week then I'll step down to 20mg and see how I manage. I got some roller skates and I'm hoping to go at least a few times before winter settled in properly. I've been cycling a lot. I'm not walking as much, I find it harder. I figure as long as I do some movement every day it will all work out. Pattern making and sign language classes are both going really well. I'm enjoying them, but they are very challenging. They're in the evening and my poor little brain is tired by then. I'm sleeping for 8-10 hours a day. I have trouble falling asleep still, I've been getting up at 9am for the last two months. I was hoping that I'd be closer to 8am at this point, but I'm being patient. Still have to spend over half my time resting, but I am happy with my level of activity around that. I had another dilation on 1st July, it went well. Turns out the right intermediate bronchi wasn’t as closed off as originally thought [CT scan had it at 1mm]. The surgeon said it needed a little work, but the main problem was in my trachea below my voice box. That’s been lasered and treated with anti-scar-tissue-spray [as I like to call it]. I get to go back again in four months [November]. This one has hurt more than previous goes. In terms of my throat and my neck/shoulder muscles. I feel a bit beaten up. The first night home I had a 3:30am coughing/vomiting/peeing adventure that totally rocked. After a couple of weeks I started venturing outside more, I made it to book club of course and learnt there was a Scrabble group too. I've been doing to that ever since on Mondays. I got another ear infection, drops took care of that mostly. I have a lot of debris in my canal and it itches. I'm trying not to scratch and using olive oil to help it along. In September I got to start BSL [sign language] lessons again. I also started a pattern making class, [sewing]. I also got to re-started therapy. That last ear infection took three months to clear up. Dilation effects were good until beginning of April. On April 17, I wrote in my journal: My lungs are definitely angry. I suspect that the effects of the dilation has gone. I tried putting the steroids up to 3mg, but I’m back to 2 now since it didn’t change anything. It is very difficult to breathe like this. It keeps waking me up. I’ll be sleeping and then suddenly coughing. Happens at least twice a night. I have to step and breathe together again. Breathe in over three steps and out over three. Stairs take ages again. I’m getting tension headaches from it all, but have realised that if someone can rub my shoulders/neck that goes. Miserable stuff. At the end of April the cough was so bad I had to stop my sign language lessons. I also thought I cracked a rib. I started coughing up blood and went to my chest doctor. An x-ray showed that it wasn't my rib, I'd pulled a muscle. I then had a CT scan and we discovered all that coughing was because of pneumonia. In May I tried a nebuliser, it did not help. My right intermediate bronchi airway has narrowed to 1mm again. Thus all the coughing after a course of antibiotics. I was using my wheelchair pretty exclusively during all of this. In June I had to stop therapy because I was too sick to attend. I heard from the hearing dog people; I am too sick to care for a dog and I’m not deaf enough [I only have moderate hearing loss, they cater to severe and profound]. A bit of happy news though, I display all of the signs and symptoms of Wegener’s Granulomatosis from an ENT perspective. I have a narrowed trachea, I have a saddle nose and I have ear/hearing damage. Plus, I’ve been under their care since I got sick, so they have records of the whole process. So my ENT is writing me up for a paper! I had a video taken through my nose to my throat, I had photos of taken of my ears and nose. I also got another hearing test. It was very exciting.
Time of writing 8 February. The dilatation went really well. I don't think they did any work in my lungs, focusing on my trachea instead. I had an incredibly sore throat for about a week. I'm two weeks out now and I don't think things are 'better' - just different. I'm not coughing as much, but when I do cough it is more violent. My air isn't getting 'caught' in my throat as much and I'm breathing quieter as a result. They want to go back in around April and do it all again. I saw the ENT the day after, my ear has been making buzzing noises and there has been some brownish discharge; but no pain. It was a mild infection and I got drops for it. I used them for two weeks, everything seemed fine so Sunday I wore my hearing aid again. Now it is buzzing again. Grumble. My wrists/hands started hurting in mid-December and when I saw vasculitis on the 12th, they decided that I had some inflammation and put my steroids back up. I was on 10mg for five days, then down to 5mg reducing 1mg every fortnight and stopping at 2mg. I'm on 4mg at the moment. Frustrating, but not unsurprising. Sign language classes started again. We've learnt furniture/house words and finally date/time words. I'm also able to create sentences a bit and we're starting to touch on the grammar now. The people in my class are very nice and I'm really enjoying it. My singing lessons are also going well. I've got two songs I'm working on and I've learnt many new warm-ups that are challenging. Therapy is awesome. I feel better now than I ever have I think. I feel like I can fight back instead of just accepting whatever horrible thing comes to mind. I successfully reduced my antidepressant, I'm on 40mg now. I hope to reduce another 20mg after the time change in March. Haven't heard anything re: hearing dog. Day-to-day things are improving, but overall there is still a long way to go. Time of writing 19 December. I continue to resist updating this page, things keep changing so quickly. The WG is still quiet, I've been reducing the steroids for several months now. I'm currently on 1mg! If I stay stable, I'll be off the steroids [and the alendronic acid AND the Adcal-D3!] by the end of January. As for my lungs, I have a another dilatation scheduled for 21st January. This is the one that was supposed to be October/November. I've been coughing more lately, I'm hoping it is simply due to the cold. I don't have any other symptoms. I've been discharged from the physiotherapist. I love my wheelchair. It has helped many times. I went on a long walk one Sunday morning and when I got home my mother-in-law called and asked if I wanted to go to an estate garden with them. I wanted to, but I'd just been on a long walk. She said they were happy to push my chair, so I got to go! My wife has pushed my chair to the grocery store several times - even into town once. I really love the extra bit of freedom it affords me once my energy has gone. I decided that the changes the dietitian suggested were all well and good and I've made a few changes. I haven't lost any weight, but I'm happy with how things are at the moment. The biggest change by far is that I started seeing a Cognitive Behaviour Therapist. She is amazing. I've been working with her for about two months. I've been learning a lot about myself. I have been making some peace with my current situation. I've also been working on my relationship with god. I have started reducing my anti-depressant. I had deliberately numbed myself this summer because I couldn't cope. I'm thinking if I'm going to make real progress here, I'll need to actually feel things. My exercise is improving thanks to my therapist too. She wisely pointed out that I shouldn't be doing exercises I don't enjoy. So I'm still walking and cycling, but I've started swimming too! My brother-in-law has access to an employee only exercise facility and can have associate members. I've joined up that way and I love it. I'm hoping to work up to two days a week. I started British sign language lessons in September. I've had my 101 assessment, classes restart in January. I love it! It is so much fun and my class is very small. I am really excited to be able to communicate without my hearing aids. My whole family is learning from me as I learn and I feel very supported. If you recall, I applied for a hearing dog at the beginning of this year. I have finally had my home inspection. I think it went really well. I'll know if I get to move to the next stage in the new year. Their dogs are absolutely incredible and I know that one would be so helpful and life-changing for me.
Time of writing 17 September. I am sorry for not updating; I didn't feel up to talking about everything. I am in a much better place now mentally [thanks to an increase in anti-depressants] and physically I am definitely moving forward.
We got the hearing loop set-up. It is lovely! Band practice is once again and option. I do not sound good, I am very out of practice, but at least I can hear to know how bad I sound... or something. My voice used to be very strong and loud. Now it is quite weak sounding and my range is much different. I'm doing my best to practice, but the depression makes it difficult.
I had the assessment for the pulmonary rehabilitation programme, I am not a good candidate for it. I am much more active than what the programme expects. Instead the physiotherapist is going to work with me 1-on-1 to help me move forward. She was very kind and I am excited to work with her. She also referred me to a dietitian to see if there are any changes I should make. Hopefully with both the physiotherapist and dietitian backing me up chest doctor will leave me alone about my weight. I am still struggling with anger/bitterness/listlessness/depression and still waiting in the queue for some therapy. My GP has been very supportive and helpful while I've been waiting. Often I'll say things like, 'my life is over' and he'll correct me gently and say it is not, it is just different. And I know it logically, but emotionally I am still not convinced. Unfortunately, on 19th April I got an ear infection. Blood tests put my CPR [level of inflammation] at 10 so I had to put the steroids back up to 5mg. I did get the full six weeks on 4mg. It felt so amazing, I had a lot more energy. Ah well. The ear infection cleared up by 20th May, only to have another one develop so I am on a different antibiotic for a week to get it under control. Vasculitis people were happy with my care from the GPs but moved my appointment with them to a Friday so I could see their ENT just to be safe.
March & April 2009
I haven't heard anything re: counselling/therapy yet. I'm still fighting the blues as best I can. Lovely spring weather helps. Also, I have been working with the social inclusion people, I've joined a knitting group and a book club. I'm enjoying both of them so far. My last vasculitis appointment went well, I am officially tapering the steroids! I am on 4mg a day now until 29th April, then 3mg. I get to go down 1mg every six weeks until I come off. We have to go very slowly to discourage a flare. Chest clinic went as expected really. I'm still fat. I've stopped eating 'treats' and I've been exercising more. Haven't seen any changes in my weight, but I feel better. I've been able to do the full 60 minutes of yogalates. I've been walking and cycling more too. I'm hoping that he'll give up on my weight number and just focus on how healthy I am. Meanwhile, I have been referred to a lung rehabilitation programme. As far as I know it'll help me to build on what progress I have made, help me to cope with my condition and hopefully keep me moving in the right direction. My assessment is in May, I'll know more then. My birthday was on 11th April and my family very kindly got together to get me a domestic hearing loop. I'm very excited for it to arrive. I'm hoping it'll allow me to participate with band practice. I've been setting my alarm clock 10 minutes earlier in a bid to get myself working on a normal schedule. So far I'm managing, tired and sore, but no more than usual. My application for the hearing dog is finished and I'm just waiting for them to come for a home assessment now. I might have fudged the truth about my last appointment with my chest doctor. There is nothing else they can do; my current state is what I get unless things go bad again. I was in denial about the whole thing. It had a few weeks to sink in and I have been very angry and bitter. I saw my GP in January and he referred me to be assessed for Cognitive Behaviour Therapy (CBT). He also told me that my diet was completely normal and that I was right in just focusing on trying to exercise. I have been doing yogalates regularly, going for walks and cycling when I can. I haven't been rowing as much because I find that very uncomfortable and occasionally scary. I went to the CBT assessment and turns out it may do more harm than good for me. I'm hopefully going to hear next week whether it is that or some other therapy. I've also been referred to the Social Inclusion Team. I gather they're good at helping people find a purpose to their lives. I'm waiting now to hear when things start now. Physically, nothing much has changed. I'm still tired, still sleeping strangely, still having some joint/back pain, etc. Mentally, everything has fallen apart. This is made even more difficult because my ten year high school reunion is this year so loads of people are finding me on FaceBook and asking how I am. I struggle because I don't want to tell them how horrible everything is at the moment and I do not want to lie either. So far I've just said surface things like I love the UK and I'm happy with my wife and the weather. I don't like feeling like this.
Keep reading... December 2006 to December 2007 |