Lindsey was always an active person, whether it was hockey, athletics, netball or any sport she would always give it a go. She is a fun loving, outgoing spirit and her thoughtful and caring nature is also evident in our two beautiful girls, Aoife (5) and Kiera (2).
Before our 2 girls, Lindsey was also an accomplished Special Needs teacher, who taught her students with an infectious enthusiasm and always ensured they had fun and lots of laughter every day. I couldn’t have been more proud of her when she completed her Masters in Special Education whilst on maternity leave looking after Aoife as a newborn.
However, during Lindsey’s second pregnancy at 30 weeks, she collapsed and was told that she would have to finish work early. Her cardiologist and obstetrician believed that the cause of the collapse was due to the pressure of pregnancy and would alleviate once the baby arrived.
Unfortunately the symptoms did not alleviate and have continued to worsen over the last 24 months with Lindsey unable to return to work. Since then she has been diagnosed with a debilitating condition called Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension.
These conditions have taken my wife away from me and our children. For the past 24 months I have seen Lindsey deteriorate so much and when I look in her eyes I can see that the light has gone out. This horrible invisible condition has consumed and severely impacted our lives.
POTS and Neurally Mediated Hypotension
P-Postural (changes in posture) O-Orthostatic (blood pressure) T- Tachycardia (heart rate above 100) S-Syndrome. This is a form of Autonomic dysfunction. The autonomic nervous system controls pretty much everything in your body. It is the stuff you don’t have to think about to do (pupil dilation, sweating, blood pressure, heart rate, digestive system, temperature regulation, breathing, and more.)
POTS is a debilitating and frustrating illness that varies from day-to-day, causing Lindsey to have regular losses of consciousness known as neurally mediated hypotension (low blood pressure fainting). Each day is a fight with some days more challanging than others. Lindsey can feel okay one minute then find herself on the floor unconscious the next. Recently Lindsey does not wake from the loss of consciousness herself and needs to be brought around. This is a major safety concern not only for her but also for our children if they are with her.
In November 2017 Lindsey collapsed at home while I was at work. Aoife and Kiera were at home with her and Aoife called an ambulance. She performed CPR as Lindsey’s heart had stopped. Heartbreakingly this is what our children have had to witness so many times in the last 18 months and it has become their new normal to see Mummy unconscious on the floor and try to help her as best they can.
Aoife's 000 call
Following this incident the cardiologist team decided that Lindsey needed a permanent pacemaker. This was implanted in December 2017 and although there was initial improvement in her energy levels, her conditon has since dramatically deteriorated with her cardiologist and GP at an impasse into knowing what to do next.
Increase in collapses - Post pacemeaker
The most serious and dangerous part of Lindsey’s POTS is the unpredictable fainting episodes. Since January 1st 2018, Lindsey has had 113 collapses with multiple loss of consciousness and been rushed to hospital 16 times. She does not get a warning of when she will collapse which has significantly increased the danger of serious injury.
Before starting school in January 2018, Aoife was Lindsey’s lifeline and was able to call me or an ambulance in times of need. Now we have being relying on an emergency SOS medical alarm button and 2 year old Kiera to raise the alarm by pressing this button (which she has done 3 times) when Lindsey collapses. Lindsey has endured all the tests the hospital can think of and so far the CT scans confirm the regular head injuries haven’t caused any internal damage.
Unfortunately there is no cure for POTS and Neurally Mediated Hypotension. Lindsey is exploring all other specialists including neurology, endocrinology, rheumatology etc. but as many of the doctors have told her, anything they find will only be a potential trigger and not the primary driver of the condition.
At the end of July 2018, Lindsey spent 23 days in hospital having collapsed while collecting Aoife from school and following some unusual ECG and blood results she has had multiple tests and investigations , including MRI's, CT scans, blood tests, ECG's and blood pressure monitoring with Dr's continually searching for answers to help reduce her symptoms.
What next ?
We believe we are at the end of the line of conventional medical treatment and feel our only options are: a Cardiac Alert Dog and visit to the POTS Treatment Centre in the USA.
Cardiac Alert Dog
Dogs for Life in Melbourne have assessed Lindsey and they believe that a Cardiac Alert/Assistance Dog would dramatically enhance her quality of life. The dog would be trained to alert Lindsey to her episodes of collapse before they happen by detecting minute changes in the odour, related to factors governed by the POTS condition. If the collapse isn’t alerted to the dog, it will be able to raise the alarm for emergency services by pressing her SOS alert button and also lick Lindsey’s face until she regains consciousness.
These amazing dogs have been proven to dramatically change the lives of people who suffer with POTS and severe fainting episodes. In the USA, the first person in the world to have an assistance dog for this condition went from collapsing 20 times a day to only having 2 losses of consciousness in 9 years!!
The cost of training one of these cardiac alert dogs is AUD $35,000.
POTS and Dysautonomia Treatment Centre
The POTS and Dysautonomia Treatment Centre in Dallas, Texas offers a unique treatment option to help reduce the symptoms of POTS. The centre's whole commitment and treatment regime is dedicated to people like Lindsey who suffer from a malfunction of the autonomic nervous system. The centre offers a combination of treatments that include biofeedback, exercise and nutrition, treatment of the autonomic nervous system, physiological stress management, and regulation of the heart rate. The treatment costs in excess of $15,000.
Thank you for taking the time to read our story and for your generosity and support in considering a donation to help Lindsey with a chance to get her life back. We would be grateful for any support you may be able to offer us, but if you can't donate, please help by sharing this page.
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