Lynda is a wife and mother of four beautiful children. She is active in the community and even after her world changed forever at the age of 38, she still continues to do everything she can to contribute to the lives of others and help those around her. Lynda was diagnosed with Sarcoidosis and Pulmonary Hypertension (PH). Sarcoidosis is a condition that generally affects the lungs and can lead to some degree of organ damage of the heart, brain or lungs. PH is a rare lung condition where the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for the blood to flow and puts strain on the heart. In the long term this can lead to heart failure as the heart becomes weaker. The only cure for PH is a lung transplant.
While treatment for Lynda’s Sarcoidosis and PH continues, it is unlikely that she will see any improvement in her health. The devastating reality is that these conditions will result in a shortened life expectancy for Lynda.
You could forgive Lynda for being a bit defeated since being diagnosed 10 years ago. Her life has certainly not taken the path that she hoped when she was expecting her wonderful children or dreaming of a future with her husband. However, that is not Lynda’s way. While she is limited in what she can do, Lynda has a heart for others and helping those who are suffering just as she is, or worse.
Lynda is active in the local community; she tutors children in maths and science, directs and produces a theatre group in Goulburn and teaches Sunday School. She recognised that there was a lack of support for people suffering from her condition and formed the ‘Goulburn Gaspers’; a support group for people suffering with lung disease.
Lynda dreams of returning to teaching, helping out at the school canteen and taking her kids to activities. But when the simple task of going to the shops is impossible without her walker and a portable oxygen machine, these remain only a dream.
Due to her condition, her husband is now her full time carer and their finances are limited. Even though this condition has changed her life forever, and Lynda will endure ongoing suffering for the rest of her life, the harsh reality is that Lynda does not qualify for support from the government. Lynda is too sick for one benefit and not sick enough for another. Lynda and her family have been doing this alone with the support of their local community and family. The community have rallied around Lynda and lent her an older model portable oxygen concentrator to assist with her quality of life, but it’s old and likely to stop working in the near future. The alternative is to use portable oxygen bottles that are heavy and must be refiled twice a week.
An iGo portable concentrator is rechargeable, small and lightweight. It continuously converts the air into pure oxygen without the need for bottles. It will give Lynda greater mobility, saves time and cost and will serve her well into the future. Lynda has been dreaming of the possibility of having mobility again and being able to attend her children’s school sport events with more involvement back into the community.
We all hate having to get up in the middle of the night to go to the toilet, but for Lynda that task is almost life threatening. Each year, Lynda suffers more than most during the winter months as the colder -10 degree Goulburn weather makes breathing more difficult. Her oxygen lead won’t reach to the toilet, so she makes the excursion without it. As she steps out onto the verandah, the cold night air hits like a wave of ice water causing her breathing to become incredibly labored. It can become so difficult to breath that Lynda fears that she will fall or pass out and no one would find her until the morning. So most nights, it’s just easier and safer to use a bedpan.
Lynda has two dreams for the immediate future to assist with her quality of health and life;
1. A portable oxygen concentrator which produces its own oxygen from the air around us and is rechargeable; and
2. A new bathroom with support rails, accessible shower and inside toilet.
In 2007, while pregnant Lynda started to have difficulty breathing and she started using medical inhalers. After the birth of her daughter the symptoms subsided and she returned to normal life.
In 2010, Lynda was expecting another child and the symptoms returned, but much worse. She became sick with pneumonia like symptoms that wouldn’t go away.
In 2012, after much testing she was finally diagnosed with Sarcoidosis which is condition that affects the lungs. Later that same year her husband suffered a serious truck accident and her priority was his recovery and caring for their young family. It was a very stressful time and she had no time to focus on her recent diagnosis.
In mid-2013 it all became too much and Lynda collapsed. Her Sarcoidosis had become worse and she could no longer walk any distance without becoming breathless. She was airlifted to Canberra Hospital due to fluid on her lungs and heart.
Following this serious incident, Lynda has not fully recovered. While in hospital they found that she had scarring on her lungs which meant the blood was not flowing properly to her other organs. She was prescribed heavy medications and saw some slight improvement in her health, but her breathing never saw any improvement. Further tests revealed she now had a secondary diagnosis; Pulmonary Hypertension, a rare lung condition. This was a direct result of the strain put on her heart by the Sarcoidosis and meant that her body was not getting the oxygen it required.
Since 2013, Lynda’s health has continued to decline. While treatment for the Sarcoidosis and PH continues it is unlikely that she will see any improvement in her health.
- Shelley Alexander
- Jasmine Tyral
- Jeanette Daniel
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