Hi Everyone! My name is Matt and I’m a musician, and I work as a guitar and bass teacher, multi-instrumental performer, and guitar repairer. I was diagnosed with CVID in July of 2021 at the age of 32, after years of getting sick, staying sick, and wondering what was wrong with me.
I’ve played guitar since the age of 7, and I’ve been a full-time musician since graduating from Auckland university with a Bachelor of Music in 2010. Seeking more work opportunities, and a change of scene, my wife Connie and I moved to Canada in 2014, starting me on a path to a rigorous schedule of teaching, performing locally, and touring both nationally and internationally for up to 160 shows in a year. Music has always been my life. I was born prematurely, had a full volume exchange at birth, and had frequent issues with croup and ear infections as a young child, but then from the age of about 4. I was pretty much always healthy; that is apart from constant cuts, scrapes, and the occasional broken bone caused by an overabundance of confidence, an adrenaline fixation, and a distinct lack of coordination! I definitely considered myself the kind of person that never needed to go to the doctor. Things started to go downhill health wise in around 2015 where I gradually got more frequent upper respiratory infections, recurrent strep throat, gastro issues, and general fatigue. I would fight through the pain for performances, often wondering if I was permanently damaging my voice, but I just took near-constant antibiotics, and soldiered on because there were bills to be paid. We were unable to enroll with a GP due to overwhelming demand (a problem over here too, but a particularly bad one in Vancouver), so I was bounced around various allergists, gastroenterologists and ENT specialists after referrals from walk-in clinics, with the unbelievably long wait times that seem to come with those appointments, somehow never being referred to an immunologist. I was diagnosed with coeliac disease which came as no surprise because my mum is coeliac too, but unfortunately a shift to a gluten free diet only improved the more acute gastro symptoms. In 2019, after a nearly 18 month bout of strep throat, sinus infections, and ever worsening fatigue, I was referred to an ENT who took a CAT scan of my sinuses and found that they were almost entirely filled with polyps. A plan was made for endoscopic sinus surgery, turbinectomy, and septoplasty. Throughout 2018 and 2019 my wife had a series of health issues requiring multiple surgeries, and we made the call to return home to Aotearoa once I had the surgery in order to be closer to family. It was scheduled for March of 2020 but we all know what happened there! We ended up getting stuck in lockdown in Canada, but very thankfully I had already switched to providing online guitar lessons in January (due to our apartment, my teaching studio included, getting flooded… with sewage), and I feel very fortunate to have done so, what with the fact that live music and in-person lessons were now off the table. I finally had the surgery in June of 2020, and after a few months of follow up procedures and after care, we made the very stressful journey back home into MIQ, finally getting to hug our families and truly be home in mid October of 2020. After returning home to a blissfully COVID free NZ (what a time that was), I got a cold that wouldn’t go away, and I found that no matter what I did, I was beyond fatigued, and something felt truly wrong. I had also developed a strange sore at the site of the septoplasty which never healed post surgery, and constantly cracked and bled. I went to see my GP, who has been my doctor since I was a teenager and is an absolute legend (shoutout to Dr Ray Khoo), who put me on the first of what would be 5 courses of antibiotics back to back, and took some blood tests. Those first blood tests showed the hallmarks of CVID and I was referred to the Immunology Department at Auckland Hospital In April of 2021. After a few initial visits and testing, my vaccine response test showed, in their words, a “completely absent response” to the pneumococcus vaccine and I was booked in to start IVIG treatment. The sore in my nose was found to be a staph infection of the surgery site and I had to go through staph decolonisation, and take some heavier antibiotics, but it took until May of 2022 to finally get rid of the infection, nearly 2 years after the surgery. My first infusion of Intragam in September 2021 was a very long one, and I was unfortunately really wiped out for 10 days after with headaches, nausea, severe joint pain, brain fog, and extreme fatigue. This was the only infusion I had without premed antihistamines, and a huge amount of hydration, but I’ll count that as a lesson learned! Although it really knocked me, and the concept of possibly feeling that way after every infusion was really scary, the boost I felt knowing that I was finally getting the help I needed was huge. I still feel pretty awful for about 2 days after each infusion, and the tail end of each 4 week cycle brings me back to feeling like a zombie again, but this has been my longest stretch without antibiotics in years, and for that glorious period of time from a few days after the infusion, until ten days or so before the next one, I feel better than I have in a decade.
This diagnosis, and the challenges that have come with it have had a profound impact on my mental health and I’m sure many of you can unfortunately relate. In the lead up to finally being diagnosed, the crippling fatigue really impacted my ability to perform; I’m a one man band, and I drum with my feet whilst playing guitar and singing, so it takes all the energy I have. Combine that with the uncertainty of feeling ‘wrong’ and not knowing why, and the apparent indifference of the medical system overseas, and the weight started to become too much. Then COVID hit and changed everything for us all. After lockdown in Canada and the ordeal of getting back home to Aotearoa, the temporary shift back to ‘normal’ life gave time for therapy and getting on the road to getting to the bottom of my health issues, but from the moment I got the abnormal blood tests back, I felt myself spiralling. I foolishly made the decision not to tell anyone except my immediate family until I was completely sure about what was happening, but this ended up being 9 months of secrecy, and growing guilt at not being able to explain what was really going on to the people I care about, all the while struggling to come to terms with what it meant for my future. To be honest, from the first snap lockdown in May 2021 it actually became easier, because we were all isolated and being careful; I couldn’t gig or see my friends anyway so no difficult explanations were necessary. Reality truly hit when life started to go back to ‘normal’ for others, but it felt like mine was put on hold, and I had no gauge on when that would be able to change. Honestly one of the hardest things to deal with has been the huge feeling of guilt that I have ‘trapped’ my wife in this difficult and truly isolating situation with me, and I have become an inconvenience to my family and friends. My family have been incredibly supportive, and I truly could not ask for a more wonderful, supportive, and loving partner, but it’s hard not to feel like a burden. I have never known this disease in a ‘normal’ world, and so knowing how to re-integrate as things settle back down has been incredibly difficult, especially seeing as there are so few of us that there’s not even a roadmap for this. Before we had antivirals and the vaccine available, the fear of getting COVID was huge and the idea of going back into busy, badly ventilated music venues still truly terrifies me, even though performing music is one of the greatest joys in my life, and previously a large chunk of my income. For the time being it was off the table. It felt like this diagnosis had stolen who I am, and although some days I can’t help but feel that way, I refuse to let it be true. Apart from my wonderful wife and family (2 nieces have arrived since my diagnosis as well!), a true beacon of light in this has been my ability to continue teaching guitar, and sharing my passion for music with others online. I truly believe it is my purpose in this life to help others feel joy through music, and there is no greater joy than seeing that spark in a student’s eyes as they discover the new sounds that they are now able to make. This has meant that I’m able to break out of the isolation of the day to day, whilst staying safe and also honing my craft to provide the best possible service for my students. I am truly grateful for the ability to access the incredible technology that makes it all possible. Not only am I able to continue teaching, but also writing music collaboratively with friends back in Canada, and even a musician who has reached out from Mozambique after finding my music online. Music is the great unifier, and although performing live has become far more challenging, I know that it’s not forever, and in the meantime there’s a world of other opportunities out there. I can’t pretend that it won’t look different, but for the first time since my diagnosis I’m feeling hopeful for the future. Now that the weather is not quite so mad, I’ve also been able to play some outdoor shows, which is still stressful, but truly wonderful to be able to feel that magic again, and get some well needed musical therapy happening. Since starting treatment, regardless of all of the challenges, I am truly humbled and grateful for the support and care that I have received. Knowing that my continued health depends on the selfless act of strangers donating blood, is a truly mind blowing reality, and means more than it is possible to convey in words. It is a gift for which I will never truly be able to adequately express my gratitude.
Because of this incredible gift I have been able to fly to Scotland for my older brother’s wedding, even having enough energy to climb a few mountains together, something that I couldn’t have dreamed of a few years back. The immunology team at Auckland Hospital, (especially the nurses!) Have been wonderful, and have always made sure that I was receiving the best possible care. This has been at times an incredibly lonely and isolating experience, and I would wholeheartedly like to thank Janet and the team at the IDF for finally making me feel like I’m not alone in all this. The work that you do to support us all is invaluable, and has really changed my perspective over the last little while. At the time of writing this I’m 2 days away from changing to SCIG treatment, and although I’m a little nervous, I’m also really excited because this feels like taking back control of a life that my body sent off track without my consent, and the possibility of more consistent energy levels, and fewer side effects has definitely got me ready to go!