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Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

Today, I’ve got an email from Amanda who says, 

“My husband has pulmonary fibrosis. He got COVID almost 4 weeks ago. We were told yesterday that he only had a few days left to live. Today, his pulmonologist came in and told us about the option of ECMO (extracorporeal membrane oxygenation). A few hours later, he went to surgery to get put on the ECMO his lungs were fading. We feel like he got a second chance.” 

Well, Amanda, thank you so much for sharing that with me and with our audience here.

When someone is in ICU with pulmonary fibrosis that often means the lungs have scar tissues, which means the lungs can no longer appropriately and sufficiently do the gas exchange, i.e., exchange oxygen and carbon dioxide. Therefore, in pulmonary fibrosis, generally speaking again, with the scar tissue on the lungs, that is irreversible. It’s a life limiting disease.

Now, what I’ve seen over the years after I have worked in critical care for nearly 25 years in three different countries where I also worked as a nurse manager for over 5 years. I’ve been consulting and advocating for families in intensive care since 2013. We have saved many lives as part of our consulting advocacy here at intensivecarehotline.com. You can verify that on our testimonial section at intensivecarehotline.com or you can verify it on our intensivecarehotline.com podcast section where we have done client interviews.

So, coming back to Amanda’s email about her husband with pulmonary fibrosis on ECMO, because it’s a life limiting and irreversible condition, many patients that end up on ECMO with pulmonary fibrosis also end up on a lung transplant list. So, they can wait for a lung transplant on ECMO. There’s of course, no guarantee that a lung transplant will become available, but at least it’s buying them time, or it can buy a patient time to be a successful recipient of a donor lung.

So, I have seen this when I worked in ICU, when I looked after thousands of critically ill patients and their families, including looking after patients on ECMO, of course, including patients with pulmonary fibrosis, waiting for a lung transplant. I hope, Amanda, that your husband will be getting a lung transplant while he is on ECMO. I know that it can be a waiting game, it can be a very difficult time because there’s a lot of uncertainty. By the same token, if your husband didn’t go on ECMO, he might have passed away by now or might have gone into palliative care with little hope or chances for a full recovery with pulmonary fibrosis. So hopefully, your husband can improve from there.

That is my quick tip for today.

The biggest challenge for families in intensive care is always that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights. They don’t know how to manage doctors and nurses in intensive care, and that, Amanda, is probably also what you’ve dealt with here because you didn’t know about the options of ECMO.

The reality is that families in intensive care can’t do their research early enough. It sounds to me like the pulmonologist told you about the option for ECMO, but you didn’t know. That also sounds to me like you hadn’t done your research to begin with. 

When you have a loved one critically ill in intensive care, you are in a once in a lifetime situation that you can’t afford to get wrong. You could have suggested that to the pulmonologist yourself, that you could have said, “Hey, I’ve done some research, and I know that ECMO is an option for my husband.” Thankfully, it turned out well regardless, but you can’t start doing your research early enough when you have a loved one in intensive care. That’s the take home message here.

Because we get so many questions and comments from families in intensive care, that’s why we created a membership for families of critically ill patients in intensive care. You can become a member if you go to intensivecarehotline.com if you click on the membership link or you go to intensivecaresupport.org directly. In the membership, 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 related.

In the membership, you also have exclusive access to 21 e-books and 21 videos that I have personally written and recorded sharing all my two and a half decades worth of critical care nursing experience with our members, making sure your loved one gets best care and treatment, and you make informed decisions, have peace of mind, control, power, and influence.

I also do one-on-one consulting over the phone, Zoom, WhatsApp, Skype, whichever medium works best for you. I talk to you and your families directly. I talk to doctors and nurses directly on your behalf. I ask all the questions to the doctors and nurses that you haven’t even considered asking but must be asked when you have a loved one, critically ill in intensive care. Once again, the goal is for you to make informed decisions, have peace of mind, control, power and influence, making sure your loved one gets best care and treatment. I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you get a second opinion in real time. We also do medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

All of that, you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send an email to [email protected] with your questions.

If you like my videos, subscribe to my YouTube channel for regular updates for families in intensive care, click the like button, click the notification bell, comment below what you want to see next, what questions and insights you have, share the video with your friends and families.

I also do a weekly YouTube live where I answer your questions live on the show. You will get notification for the YouTube live if you are a subscriber to my YouTube channel or if you are a subscriber to our email newsletter at intensivecarehotline.com.

If you want your email read out quickly because I have so many emails sitting in my inbox, then leave a small donation here on the super chat button and I will get to your email in the next couple of days or leave a small donation anyway, or a big donation. It will help us to make as many videos for families in intensive care as possible.

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.

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