Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.
So, we have been working with a client for I think two years now. Initially, the client was in ICU for COVID pneumonia. COVID on the background of a lupus diagnosis. And then this lady ended up in ICU for a few months.
Initially, the ICU wanted to withdraw treatment, basically saying she wouldn’t survive. This is a lady at that point, she’s 46 years of age, young family and the ICU was basically ready to pull out. We successfully intervened, making sure she gets all the best care and treatment. Making sure she gets a tracheostomy because it took her a long time to get off the ventilator.
And now, two years later, we are still working with her. Eventually she went home on BiPAP and high flow nasal prongs without a tracheostomy. But she’s still struggling and has hospital readmissions at times because of low saturations. And now she’s back in hospital with low saturations. They can’t bring her saturations up saying she’s got a lung infection. She’s also got a history of cystic lung disease and cystic emphysema.
Now, finally, after all this time, the hospital or the respiratory team is asking her whether she would consider that lung transplant. Should she go on the lung transplant list?
Now, this is obviously a complex situation. And what I do suggest here is for this particular client to talk to the respiratory team and see what they say. Now, over the years after having worked in intensive care for over 20 years in three different countries where I also worked as a nurse unit manager for over five years, my experience is lung transplants can go well. They cannot go so well. So, it really depends, there’s definitely a little bit of luck involved.
And I have also seen that if lung transplants go well, patients still come back after a few years with rejection issues, with compatibility issues, and so forth. So, you should definitely talk to the team there and see what they have to say.
On the one hand, I am extremely pleased that they are wanting to talk to you about a lung transplant because given that they basically wrote you off a couple of years ago when we first started working with you and your family, this is a good result because they didn’t want to continue treating you then and now they’re talking about a lung transplant since your condition I know hasn’t been all that great.
Now, I know you’re at home on BiPAP (bilevel positive airway pressure) and high flow nasal prongs. Now, one of the reasons for your current admission, as far as I can see for your current hospital admission is simply that you don’t have intensive care nurses at home 24 hours a day who can handle patients with a BiPAP and with high flow nasal prongs. When you look at our sister side at intensivecareathome.com, there’s a section on our website – Mechanical Home Ventilation Guidelines, and you should be having 24-hour intensive care nurses at home to be able to manage the BiPAP, to be able to manage hospital readmissions or avoid them full stop. Same with the high flow nasal prongs.
I know you are overseas. If you were in Australia, we could look after you at home with Intensive Care at Home. We look after many similar clients at home compared to your situation, just putting them out there that anyone who’s watching this, who’s in a similar situation, at least not wanting to go back to hospital, you should be looking at intensivecareathome.com at our sister side.
But coming back to your unique situation, you should absolutely be talking to the respiratory team there and see whether that lung transplant is an option, and they will talk you through it. But in the meantime, while you are potentially waiting for a lung transplant, we should be working on the advocacy to get your 24-hour nursing at home. But we can talk about that offline, how to go about it.
So that is my quick tip for today.
If you have a loved one in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.
Also have a look at our membership for families in intensive care at intensivecaresupport.org. There, you have access to me and my team 24 hours a day in the membership area and via email and we answer all questions, intensive care and Intensive Care at Home related.
And also, I offer 1:1 consulting and advocacy for families and for patients in intensive care. I talk to doctors and nurses directly. I represent you in meetings with the doctors and the nurses so that you have someone on your team who speaks the medical language and who can advocate for you and your family.
Now, we also offer medical record reviews in real time so that you can have a second opinion in real time. Please reach out to us if you want that. We also review medical records after intensive care if you have unanswered questions, if you need closure or if you are simply suspecting medical negligence.
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Thank you so much for watching.
This is Patrik Hutzel from intensivecarehotline.com, and I will talk to you in a few days.
Take care for now.