I'm 36 with Duchenne Syndrome,Ventilated & Trach -2 Yrs ICU -Can INTENSIVE CARE at HOME Get Me Home?

https://intensivecareathome.com/im-36-with-duchenne-syndrome-ventilated-trach-2-yrs-icu-can-intensive-care-at-home-get-me-home/

I'm 36 with Duchenne Syndrome,Ventilated & Trach -2 Yrs ICU -Can INTENSIVE CARE at HOME Get Me Home?

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Hi, it’s Patrik Hutzel from intensivecareathome.com where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies and where we also provide tailor-made solutions for hospitals and intensive care units whilst providing quality services for long-term ventilated adults and children and medically complex patients at home including Home TPN (total parenteral nutrition), Home IV potassium infusions, Home IV magnesium infusions, Home BIPAP (bilevel positive airway pressure), Home CPAP (continuous positive airway pressure) ventilation, tracheostomy care for adults and children that are not ventilated. We also provide port management, central line management, Hickman’s line management, and PICC (peripherally inserted central catheter) line management as well, and palliative care at home as well.

Now in today’s blog, I want to read out an email from one of our readers who says,

“Hi, Patrik,

I have a ventilator and a tracheostomy that I use around the clock. I have been in hospital for two years now trying to get back home to be with my family. I’m 36 have a sound mind and even a degree. So, I’m aware of everything.

I have Duchenne muscular dystrophy. I have always lived at home until I was 34 and I’m two hours away from any family. I really want to change that and get my life back on track. I used to work from home and contribute to society and I know going home would save a lot of money.

I have tried many avenues and talked to many people and programs and keep hitting roadblock after roadblock. Every time I get my hopes up, I get denied or told another lie. I’ve been on waiting lists for months and after that, I get told the program I applied to cannot help me even though I tell them all my conditions and medical necessities upfront. They contact me later saying I need more help than the program can provide a ventilator and tracheostomy should not be a life sentence to be served in a hospital.

We have landed on the moon for goodness’s sake. Surely, there is a solution in 2024. I just know there is. Please let me know if you receive this message. I truly hope to get any good news.

From Nick.”

Well, Nick, thank you so much for your email and I’m very sorry to hear about your situation.

Well, the good news is we have taken many patients home in similar situations from hospitals, from ICUs, after two years in ICU. That’s actually been the longest that we had someone there before we could actually take them home until funding was approved until there was a house renovated and so forth. So, you are in a position where this can be provided for you as well. There is no issue with getting you home besides, simply doing it.

Now, you have not shared with me your location, but I presume you are in Australia. And you know, at your young age of 36, you will be eligible for the NDIS (National Disability Insurance Scheme) and the NDIS in Australia is funding most of our clients for 24-hour nursing care. So, really you are in a good position.

But even if you’re not in Australia, you should be reaching out to us because even if you are in the U.S. or in the U.K., we can help you privately. So, one way or another, we can help you. So, this is just the start of a hopefully fruitful conversation to get you home.

Continuation...
https://intensivecareathome.com/im-36-with-duchenne-syndrome-ventilated-trach-2-yrs-icu-can-intensive-care-at-home-get-me-home/