Boulevarde Dreaming

Tag: oms

  • 5). All aboard the Tysabri train

    SEPTEMBER 2017

    Tuesday 5th September 2017- Day One of Tysabri.

    In such a short period of time I had gone from hearing that we could wait and see if I needed medication to suddenly needing to quickly agree on a disease modifying drug (DMD) to trial.

    I never did get a chance to closely read the glossy, holiday destination style pamphlets for Tysabri. My Neurologist, Dan and I had a chat (mainly about the possible risks) but also including the hopeful benefits and then I was booked in.

    I didn’t really feel that I had much of a choice at the time- the MS seemed like it was spinning out of control and the ongoing damage needed to be stopped. The night before the first infusion I got very panicky and teary when Dan left. A beautiful nurse sat with me, listened to me and reassured me. She was so kind and gentle and her response was exactly what I needed. I was so scared about starting this drug. I had been reading about the risks of PML and the disability that it could cause. It all felt like this situation had escalated so quickly.

    A little bit about Progressive Multifocal Leukoencephalopathy (PML).

    Yes, it is as bad as it sounds…..

    PML is a rare and usually fatal viral disease of the brain, caused by the John Cunningham (JC) virus. Hence the JC virus test that I had at my initial specialist appointment (the blood sample that travelled to Denmark).

    The JC virus is harmless except in patients with weakened immune systems due to illness or immunosuppressive medications. The symptoms are tricky as they tend to imitate common MS symptoms such as clumsiness and changes in vision, muscle strength, speech and personality changes. PML has a mortality rate of 30-50% within 6 months and any survivors are left with serious neurological disability. Scary stuff!

    Back to the first ‘Tysabri Tuesday’:

    The plan for today was for me to be discharged from St Vincent’s private hospital and to go over to the public hospital next door for my first infusion.

    My first admission to hospital was memorable-I had just had a huge five days with five doses of steroids, an MRI and the black hole conversation.

    It wasn’t all terrible though. Dan visited me every day and we always got out for a walk around Darlinghurst. I also had some lovely visits from friends. While I was in hospital, I told two of my friends about what was happening for me. One was a close work friend and the other was my old school friend after we had started chatting about some posts that she had put on Facebook. And God love them- they both made plans straight away to come to see me in hospital. My beautiful sister-in-law also came with her family and she and I were able to do some chatting while our husbands and my nephews went out exploring. Visitors in hospital are little blessings in an otherwise long and boring day!!! Visitors bring presents too and (sometimes almond milk lattes) and I was grateful for every minute they spent with me.

    When we arrived at the IBAC (Immunology and Infectious Diseases Unit) for the infusion on that first day we had no idea of what to expect. What an experience we were in for!!

    Before the infusion started, I signed my life away, and before each subsequent infusion I have to check the list of symptoms of PML and agree that I have discussed any new symptoms with my specialist. The list gives me a laugh each time when I need to ask Dan if he has noticed me acting irrationally or being clumsy. (Yes and Yes!- but probably not PML related).

    The kindness of the staff that we meet really stands out. They have so much patience with all of their patients who come and go during our two-hour visit. When we were there for that first infusion, they had a volatile and emotionally unstable patient who they gently cared for until he had received his medication, been fed and had been able to be calmed down.

    I cried when we arrived. It was so overwhelming- it had already been a massive few days in hospital and now I had arrived for my first Tysabri (Natalizumab) infusion. That drug that was going to be added straight to my precious veins- none of the staff went near it until they were covered with thick purple gloves, a thick purple apron and with a protective eye mask. After two hours (an hour of infusion and an hour of observation) we were free. I felt OK physically and was even starting to get used to the constant cannulas in my veins.

    We had lunch in another café in Darlinghurst before heading home. There is a photo of me on Instagram looking shellshocked and with the caption: “Home now- time for some recovery for the rest of the week before I return to work”. I really thought I was heading back to work on Monday!!!!!

    Boulevarde Dreaming is born

    During my first week in hospital, I spent hours on Facebook and Instagram and I found support groups for people with MS on Facebook. This was also where I found my amazing Instagram community. I decided that I would start a new Instagram account to start linking up with my people. At the time I had no idea how big my group would become. The first contact I found was the amazing Staying Healthy with MS. She was a fantastic first link to all the hundreds of people that I have now found who are from all around the world and are all living with MS. Through my Instagram connections I have found women living near me and I have been able to meet up with a couple. With others who are further away we send kind messages and support to each other from around the world- we keep an eye on each other and give pep talks and even post cool things to each other (through real snail mail!!!). Why boulevarde_dreaming? I just wanted to get home and spent so much time looking through our recent wedding photos and photos of our lake that I made myself feel a little homesick.

    What kind of evil superpower is this?

    I enjoyed the first couple of days at home resting especially when a close friend came to visit me. I looked like I had been through the ringer and we both acknowledged this. I lay on the lounge while talking to her and I loved the normality of our chat.

    I walked with my husband and youngest child to school each day and then by the end of the week we were walking a bit further together each morning. It was all starting to look pretty good.

    Friday 8th September 2017

    The side effects hit me by 7pm. It started with nausea and chills and I physically shook for a couple of hours. Then the nausea continued- it felt like I was riding waves of nausea, with fatigue and a complete lack of appetite. I lay on the lounge until Sunday afternoon when I finally started to feel better. By this stage I had lost 6 kilos within the past two weeks with the significant changes to my diet and then the evil side effects over the weekend.

    And so my nesting phase for recovery began- I spent the next week up and down and in and out of my little nest in the loungeroom. I slept, nibbled on food (mainly fruit) when I could stomach it and I started to watch health documentaries. It was lucky that I started to settle into my space because this would be where I spent the next few months while resting and recovering.

    I kept calling into work to say I needed a few more days and then this became the rest of Term 3. I still felt drunk and the world was still on its off kilter lurch. Then just before the school holidays started I developed double vision and we were back to where we started- off to see the wizard again.

    More about my nest

    When I came home from my first hospital stay I took over the three-seater lounge in our back loungeroom. Our loungeroom has big windows looking straight out to the lake and because it is at the back of the house it feels like a peaceful retreat and separate from the outside noise.

    I could see life still happening around me- people walking past on the bike track, birds in the trees and I was close enough to our kitchen to have lots of visits from the kids.

    I feel like I spent months living my life remotely from the lounge. I could problem solve an issue at work (even though I was officially on sick leave I was still trying to help to keep things flowing when I could) and I had many phone calls and responded to many emails during this time – often while lying down battling dizziness.

    I entertained visitors from my nest and I graciously accepted loving gifts of flowers and organic fruit and vegetables.

    I read all the books about healing and health and wellbeing that I could find and I watched so many documentaries. I read and re-read everything that I could about the Overcoming MS (OMS) program and worked so hard to make sure that I was following the seven guidelines as strictly as I could.

    I got up in the mornings, went for a little walk, had a shower and then settled back in to get comfortable in my nest. During this time our new lounges arrived, and I was able to upgrade my nest. This was all still during the first 8 weeks of being newlyweds and moving into our new house, so our recently purchased furniture was gradually arriving.

    While this time feels like a lifetime ago in many ways, I can still remember how unreal everyday felt and how much uncertainty I felt about where things were heading for me.

  • 3). The day after diagnosis (D-day +1)

    The day after I was diagnosed Dan and I headed up to the ER at St Vincent’s Hospital in Sydney as had been suggested by my GP. I had packed my bags for the 5 night stay my GP had been told was expected for me and had arranged for the kids to be with their Dad. We arrived at the ward and handed over the letter from my GP. We didn’t have to wait for too long until I was in a bed with a drip, on a heart monitor and waiting for the Neurologist to come to meet me. (These were the first of numerous ‘needle sticks’ that I would have over the coming months- so many blood tests and infusions and cannulas! I have learnt which are my best veins and which ones only work sometimes. Hand cannulas hurt the most!!)

    We waited and waited- and the Neurologist never arrived. Eventually they called him and I was able to speak to him on one of the nurse’s mobile phones. He explained that he didn’t do visits to the hospital on the weekend and it was a misunderstanding between my GP and his registrar that had landed me in hospital in Darlinghurst (two hours from home) on this sunny old Saturday.

    He was apologetic and told me that as the numbness had been happening for 3 weeks the steroids wouldn’t help me at this stage. He told me he would be able to see me on Tuesday in his rooms- and then he suggested I go home and enjoy the weekend.

    Over the past few years I have often wondered if I had been given the steroids at this time of first diagnosis if this could have stopped the snowball effect of the next few weeks and months. I know now that the side effects from steroids are vile and they have consistently caused a two week period of hell each time I have them. The process of coming down from the high dose leave me in 5 days of hangover-esque blur.

    So I was unhooked from the drip and the heart monitor and we headed out to Darlinghurst for the first of many lunches together in a funky little local café. It feels so bizarre looking back at the day. We were alternating between our comfortable normality and the precipice of the new world of chronic illness that was beckoning to us. When we got back home we were a little lost. Yesterday I had received this huge diagnosis and been expecting to see a specialist and to receive some treatment and now here we were back at our quiet home on Saturday night.

    We invited Dan’s parents over for coffee the next morning and told them about the diagnosis and that we had been to the hospital but wouldn’t see the Neurologist until Tuesday. Obviously this was a huge shock and one of those conversations that you hope to never have to have.

    Dan had gone out in the morning and bought a hammock and later we sat together looking out at the lake and watching people looking carefree as they walked past along the cycle way. My plan for the coming week was to just continue as normal except for Tuesday when we would go back to Sydney together.

    And continue as normal I did. I worked each day at school and did 10 hours of supervision sessions over the week. It was a huge week and looking back now I wonder how I had fronted up to work on Monday, let alone battling on throughout the whole week.

    Tuesday came around quickly and we drove back up to Darlinghurst and had brunch together in another funky café. Then we went to meet the Neurologist. He looked at my MRI’s- showed us all the lesions and pointed out the areas of accompanying inflammation. It was a little overwhelming and I was a bit wobbly and needed to sit down while he explained all of this.

    He did the usual neurological exams. “Touch my finger, then your nose”, watched me walking in a straight line, watched to see how my eyes were focusing and tested my reflexes and the strength of my hands. I explained that I had noticed some improvements with the tingly, numb fingers on my right hand over the past week. He asked about work and I explained all of the hours and tasks I had been getting through in recent weeks. His advice about work was to continue doing my usual work and activities wherever possible.

    The Neurologist suggested that we could try a wait and see approach and briefly talked about possible medications to trial. This conversation was so brief and the prospect of medication seemed so far away into the future that he didn’t even give me the glossy brochures that I would eventually become very familiar with. I did have some blood tests, including the test to check whether I was JC virus positive. This turned out to be pretty lucky as the results take three weeks to come in. The blood sample for this test is sent to Denmark for testing. My blood now travels overseas more often than I do!

    He stated that he thought we would be able to meet in 6 months to discuss medications which Dan and I thought sounded great. Unfortunately, MS had other plans and we would meet again much sooner than this.

    It was just 16 days before we would see him again.