LAST UPDATE: For the purposes of closing this gofundme campaign, which we do with the deepest gratitude and glad tidings, this will be the last update here. Louis is improving and doing relatively well, even after the close calls he had, due to initial misdiagnosis, Covid delays and shutouts for in hospital care, and inappropriate medications that pushed him to his limits. Thankfully, he bounced back before hitting the very bottom. Now, he is resting and recovering whilst responding well to alternative treatment, diet and lifestyle changes. His kidney function has miraculously plateaued. And now he must protect what function he has left with the best medical advice so far: STRESS LESS. Thanks to a recent deal with Wise Music Group, he has found a musical home, and some ability to enjoy his Autumn years, which looks to see his music spread far and wide, with a good dose of appreciation, acknowledgement and even some measure of prosperity. May this wind fill his sails and allow him to fulfill his dreams of sailing and dreaming. Perhaps he will dream up some new “sea shanties for the soul”.
Update 29 Mar 2022: On Louis’ birthday this month, he was admitted to hospital. He has had a small surgery which saved his life, and received far more specific and helpful tests to determine the course of his ongoing treatment. But for now, the outlook is far better than it has been for the past year. Some good news, at last. Slowly, slowly, Louis should restore some of his health and fitness.
Update: 13 Feb 2022
Some progress has been made, since the last update…despite the inability for Louis to attend appointments in Hospital - for his severe breathing difficulties and absolute lack of energy. One of his medications was completely working against him…causing side effects that increased fluid retention (including on his lungs), also causing weight gain, and contributing to his weakness, and worst of all, causing him major depression. He has stopped taking that drug, and is working on a new regime with his GP. Now, we wait for an October appointment, Covid permitting. It’s not nearly good enough for him to have to speak to specialists over the phone, instead of in hospital. But that’s the New Normal. In the meantime, we will continue to try and claw back some fitness, and focus on his mood. We appreciate your support. It really is making all the difference.
Updated Jan 8 2022.
Louis’ condition has been up and down, since his symptoms became obvious in February 2021, but he seems progressively worse. Unfortunately the Covid pandemic has wreaked havoc on his treatment, and even his diagnosis, while he has had to work with the limited access to hospital care, and even outpatient services.
As of November/December 2021 Louis is undergoing further extensive tests with the Pulmonary team, at RPAH, since he has had partial lung collapse and major fluid retention, leading to weight gain, further complicating things.
His doctors hope to find alternatives to Dialysis or complete Kidney failure, and, as mentioned, his case is not at allstraightforward, since he has now begun to show so many increasingly complicating, contributing Health issues.
The money raised here would contribute to the growing list of critical and expensive medications and medical
treatments, such as at home dialysis, steroidal and non steroidal meds, and other aids, such as Occupational Therapy equipment, as he becomes weaker.
It would also allow him to focus on recovery, if treatment progresses well, or palliative care, when that inevitably becomes a reality. Your donation would enable him to focus on getting well or staying well at this crucial stage of treatment, instead of having to sell the very few assets which provide his most basic comforts, joys and sense of identity and hope for a future life, albeit, on an altered timeline.
This is a time critical campaign where your assistance in the next few months will make all the difference to him.
Already, the funds raised have allowed him to replace his “wheels”, as his previous transport did not pass rego. And now he is having to be driven to regular appointments with his GP, Pathologists, and several specialists. These same funds have also contributed to paying for a specialised diet programme, mobility chairs, and so much more. We thank you for your generous support and kindness.
Rachael and Louis (and Jack the super pup)
Photos by Tony Mott