Latest news with #DonnaThomas
NZ Herald
6 days ago
- Health
- NZ Herald
What's it like living with sarcoidosis
Sarcoidosis usually affects the lungs, although it can affect every system in the body. Photo / Getty Images Online only What's It Like To Be is a regular 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. Donna Thomas (left) before she was diagnosed with sarcoidosis. She now has regular medical appointments, and struggles with a range of health issues. Photo / Supplied 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
Yahoo
24-02-2025
- Health
- Yahoo
Ambulance call centre 'saved from closure' union says
A 999 emergency call centre run by an ambulance service will remain open following a campaign, a union said. The Bedford Emergency Operations Centre, run by East of England Ambulance Service NHS Trust (EEAST), was at risk of closure in September after the building was found not to be up to"modern control room standards". The EEAST's board has now rejected the closure of the Hammond Road centre, citing the potential harm to patients and to the trust's reputation, according to the GMB Union. Labour MP for Bedford and Kempston, Mohammad Yasin, as well as GMB Union's regional organiser, Donna Thomas, welcomed the news. The trust has been contacted for comment. The site deals with calls from Bedfordshire, Hertfordshire and parts of Essex and Suffolk and is home to about 200 staff. It also housed call handlers for the 111 service and the local patient transport service. The trust was considering closing the site, repurposing it or refurbishing it. An email sent to staff also acknowledged the trust had been recruiting and training more staff at its Norwich site, and Bedford workers were potentially going to relocate to Chelmsford, 48 miles (77km) or Norwich, 91 miles (146km) away. Marika Stephenson, the trust's interim deputy chief executive officer, said in a statement at the time that the trust understood it was "a worrying time". "We are refurbishing our call handling centres in Norwich and Chelmsford to provide the best service to our patients and a modern working environment for staff," she said. "However, the constraints of the Hammond Road building in Bedford mean it is very difficult to bring it to modern control room standards." Yasin said he welcomed the board's decision and hoped it meant "a renewed commitment to Bedford's emergency control centre and much-needed investment". "Bedford is the busiest hub in the EEAST and its closure would have had a significant impact on the region," he added. "Given how overstretched the ambulance service is, losing a control room would have risked compromising the safety of patients." Ms Thomas added: "We welcome the announcement that EEAST's Board has reconsidered the reckless proposal to close Bedford EOC. "The proposed closure would have had a serious knock-on effect on ambulance cover across the region and threatened public safety." Follow Beds, Herts and Bucks news on BBC Sounds, Facebook, Instagram and X. Ambulance 999 call centre at risk of closure Ambulance trust moved out of 'special measures' East of England Ambulance Service
