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What’s It Like To Be is a regular listener.co.nz column where New Zealanders from all walks of life share first-hand experiences of living with and overcoming health challenges. Here, Donna Thomas, 58, tells Paulette Crowley about living with sarcoidosis, a rare inflammatory and autoimmune condition.
I was planting some trees in my garden one day and put some compost down. I didn’t put a mask on while I was doing this, which was really silly. I remember leaning over the compost bag and noticing the tiniest puff of dust going up my nostril. That was in December 2021.
After that, I had some trouble breathing – shortness of breath – and didn’t feel well. I went to the doctor’s a few times, maybe. Then in April, I had some chest pain. My daughter drove me down to the hospital, where I ended up having a CT scan. That’s when they saw a granuloma – kind of a lump of infection – on my lung.
They had to remove the upper right lobe of my lung to biopsy it. That procedure didn’t go smoothly, as my ribs dislocated during the surgery. It’s called a subluxation and the surgeon was kind of blown away because it’s unusual. But when I look back from where I’ve landed now, I must have been in a highly inflamed state.
I was finally diagnosed with sarcoidosis, an autoinflammatory disease, in March 2022 by a respiratory physician. I learnt that well over 90% of sarcoidosis cases start in the lungs, but can go on to affect different parts of the body. About 5% of people will end up with it affecting their neurology – it’s called neurosarcoidosis. That’s what I have ended up with.
Sarcoidosis is definitely one of the rarest rare disorders. The specialist who diagnosed me said most GPs would never see a case in their medical lifetimes. They call it a snowflake disease because everyone who has sarcoidosis presents so differently, meaning that much like snowflakes, no two cases are alike.
This is a really big challenge for medical people, and for me as well. I had a consult with a new neurologist recently. When I asked him if he knew about sarcoidosis, he just didn’t say anything. We look to medical professionals to treat us and if they don’t know what’s going on, it’s really scary.
Some of the ways that sarcoidosis affects me is that my legs, hands and feet ache. This can wake me at night. I also get cramping and burning in my muscles and I’ve got numbness and tingling in my fingers and toes. My cognition is also affected – I find it hard to remember things – and I get very fatigued. Sarcoidosis accelerates many conditions. I’ve had significant surgery around my mouth to get basal cells removed and I have cataracts that are coming on hard and fast. I’ve also just found out I need a hip replacement.
I now live a different life to what I used to. I was a trauma specialist and managed a team of 70 people before I was medically retired. I was working 60 hours a week, like lots of people do. Back then, I could spin a lot of plates, you know, just throw anything at me and I’d just shuffle it around. And it always makes me want to cry because I miss my career, but I can’t do that anymore.
Now, it’s not about trying to be who I was but trying to function in a way that I’m not lying in bed all day. Obviously, I can’t work, but I might get in two productive hours a day, doing housework and tidying up. I have to take things slowly. If I’ve got medical appointments, the next day has to be a rest day because my brain and body are just tired.
There’s a massive spectrum with sarcoidosis – depending on the type of disease, some people can be fine, and lots will go into remission. I don’t know if I’d say my disease is at the top of the chain, because I have refractory sarcoidosis, which is chronic and progressive. Frontline treatments haven’t worked to put me into remission. Now, we’re at the next level of treatment and the last thing we’ve got to try, at the moment, is a medication called infliximab. The hope is that it will bottom out my immunity and my inflammation levels will drop.
I am so, so far away from the person I used to be and have a lot of grief still around that. But you know, you’ve just got to kind of get on with things. I can either lay down and die or stand up and live the best life I can with this. Grief just takes away time from family and it’s made me realise that work’s not the most important thing in the world. I’ve got five kids and my ninth grandchild on the way, so now, it’s more family time for me. And more and more I just want to do the things I enjoy, not the things I have to do.
Sarcoidosis usually affects people’s lungs, although it can affect every system in the body. It mainly occurs in people, especially women, between 25 and 45 years of age. Some studies have suggested there might be a link between sarcoidosis and environmental factors, including potting mix. Some people will have no symptoms from sarcoidosis or have mild, treatable symptoms that clear within a few years. For others, symptoms can become widespread, chronic and hard to treat. To donate to Donna’s givealittle, go to givealittle.co.nz/cause/fighting-sarcoidosis
