Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
You can check out last week’s question by clicking on the link here.
Breanna’s brother has end stage COPD and now on ICU for cardiac arrest and she’s asking if he needs an immediate lung transplant because of minimal lung function.
My Brother has COPD and Went into Cardiac Arrest. Does he Need to have an Immediate Lung Transplant because of Minimal Lung Function?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Breanna here.”
Breanna: They are not going to do that. I’m tell you right now. I talked to Samantha and she told me that we were in charge of doing all of that and that’s why I called you here and have our mind made up.
Amy: We talked to Clay over at NHSU, his BMI had to be at 215, he had to be able to walk on his own and he couldn’t be on the ventilator.
Patrik: No. That’s not accurate. What often happens in a situation like that, you will need to be proactive. You really do. There is no point in waiting for other people to make decisions that they may or may not make especially if he was in front of people who were trying to get him onto a lung transplant, you need to get in contact with them. Tell them about his current situation and they would understand that end-stage COPD is end-stage.
They understand that time is critical. He probably sleeps through the system for now because he’s gone somewhere else but the reality is with 17% of lung function, there is not a lot of time. What I would do if I was you on Monday, I would do two things. Number one, get on to the doctors at Peaston, you really need to get in front of them and number two, talk to the people considered him for a lung transplant before the cardiac arrest.
If you can combine the two that will probably get you somewhere. Does that make sense?
Breanna: Yeah, and Patrik can you tell me what his BMI would be, he is… 260…
Patrik: Hang on. I’ll tell you. Just give me one sec please.
Amy: It should be 183.
Breanna: He’s never gonna weigh that.
Amy: No, he’s not. Are you kidding me? He would be nice, I’m saying he should be 215.
Breanna: 215 is the…the BMI, is the Body Mass Index, it’s not his weight.
Patrik: He’s 5’4 did you say?
Breanna: No, 5’10.
Patrik: 5’10 and he’s 253 pounds and his BMI is 37.7.
Breanna: What is it?
Breanna: 37.74. What was 216 all about Amy?
Amy: 215 pounds.
Patrik: Oh, 215? I calculated for 263.
Breanna: No. She’s saying that they told her he’s gotta be 215 pounds.
Patrik: Look, numbers are great and I’m a bit of a numbers person myself but in this instance, stop worrying about numbers and get in front of people. People at the end of the day will make things happen. Numbers don’t make things happen.
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Breanna: And you’re saying that we should reach out to Valley Rose Hospital and call them now?
Patrik: Absolutely. Whoever-
Breanna: How about UWMC, should we contact UWMC as well?
Patrik: Contact anybody who can list him for a lung transplant but your shortcut is probably somebody who had already considered him because they know him. Always talk to people who know him first or who know about his situation first but the missing link-
Breanna: That’s what I think too Amy, you need to talk to Arvin. He knows his history better than this guy who’s never called you back, right?
Patrik: You need to talk to people.
Patrik: You need to talk to people. In situations like that, again from what I’ve seen over the years, you have somebody with end-stage COPD they get onto a lung transplant list and open in end-stage COPD they get priority because yes, there are other people out there on with severe lung disease who need a lung transplant, but their lung function might still be at 50% for example, they have more time. It doesn’t sound to me like Michael has a lot of time.
Patrik: Those would be your first steps. You need to get in front of the doctors at Peaston. There is no doubt in my mind, okay? And you will need to contact the people who considered him for a lung transplant in the first place.
Breanna: Okay. Because Arvin… Amy, he’s Dr. Arvin, if you get in his face, he might be able to contact these doctors at Peaston Hospital and say, “Look let’s get him to Valley Rose Hospital or UWMC”
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Breanna: Okay. We have to be aggressive Amy. Don’t … you have to stop thinking that what they’re telling … I’m not saying they’re lying to us but I’m saying that they’re saying anything they gotta say over there at Carefield Hospital to get you out of their face.
Patrik: Correct. You’re nailing it on the head there Breanna. Let me ask you another question, with the cardiac arrest, has a DNR ever been brought up as a point of discussion? Do you know what I mean by a DNR?
Breanna: Yes, to me. How about you Amy?
Patrik: Okay. That’s great. That’s good to know.
Breanna: And I’m telling you we really … when we had to make the decision to approve Amy had to make the ultimate decision when we were agonising over whether to do a trach on him or not because we really didn’t know if that’s what he wanted. He had never discussed that with his wife before, he had never discussed with his family and so we were so agonised over that and so we approved the trach and all, another day to tell us if he wanted this or not and we were so relieved when he woke up and told us that he wants to come home, he wants to lie in his bed. That’s why I’m not gonna give up on my brother.
Patrik: Yeah, and that’s good and what you just said there, you need to use in your communication with the people that we just talked about. That is really important because you are your brother’s or your husband’s best advocate while he can’t do it himself. You are just acting in his best interests because he has made his wishes crystal clear to you. I would not worry about weight. I would worry about people because the people are making things happen.
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Breanna: Basically, Amy what Patrik is saying is that we are not to take no for an answer.
Patrik: Thank you. That would’ve probably been the last thing that I said when we get off this call. That’s usually often the last thing that I say to people but I’m glad you take it out of … glad you said yourself. Absolutely. You can never take no for an answer. This is obviously a life or death situation. I also think that with what I’ve seen over the years, 17%, I know I keep saying this over and over again. 17% of lung function is not a lot. Time is critical.
Breanna: Patrik would you say that money is an issue?
Patrik: He’s got insurance and you mentioned to me that you’ve just changed from plan A to plan B or whatever you mentioned, I do remember you saying that…
Amy: We just got him on D and part C for prescription.
Patrik: Again, I would not worry about money. I would just focus on clinical issues. I would just focus on that because you were telling me that he is covered right?
Patrik: Then money is not an issue so just focus on the clinical things. Keep it simple. Don’t over complicate-
Amy: But his insurance is saying… that insurance does get complicated because he’s not on a budget insurance plan. He’s on Medicare. I’m just wondering if that was a hindrance and if he was on private insurance if he would be getting better care.
Patrik: Potentially but again you shouldn’t make it about that, you shouldn’t even think about that. You need to make this about clinical issues and not about his level of insurance. He’s got the basics covered, you should not … Again, what I’m saying here, keep it simple. Don’t over think it. In a situation like that, people have the tendency to overthink it and rightly so because it’s a very complex situation. Of course you would over think but in order to get an outcome, keep it simple and talk to people.
Patrik: Don’t overthink insurance, yes you have that in the back of your mind but that’s not how you should think about your brother’s life or about your husband’s life and I know you don’t but the door openers will be people.
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Breanna: Amy when you talk to these people at the hospital and they blow smoke up your butt. I’m sorry to make … Oh, well, he’s good. He’s in good spirits isn’t he? Blah, blah, blah, say okay, what are you doing to get my brother on the lung transplant?
Amy: Okay. Alright.
Breanna: They’re telling you what you wanna hear but it’s not helping him.
Amy: It’s not SNHU, we’ll go to Valley Rose.
Breanna: Valley Rose Hospital or UWMC.
Patrik: But even so you need to do all of that but you need to really get in front of the doctors. They are the ones who will open doors for you and as I said to you when you are with the doctors, it could be very good if you pulled out your phone and you’ll get me on the phone when you’re there. I would be very happy to do that.
Breanna: If we can’t get a hold of these doctors because we’ve been fighting for weeks to get their attention and we can’t. If Amy is not successful in doing that, can you call the hospital and advocate for that?
Patrik: Yeah I can add on the pressure. No doubt about that. Having said that, the shortcut to all of this is to find out when are they seeing Michael and to be there because there will be a daily thing, daily 10 AM or whatever the timeframes are, they have a routine and they will be seeing him at a certain time and you will need to be there sooner or later and you have to make this happen.
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Breanna: Okay. Amy, I can put you up in a hotel out that way if that helps for a couple of days.
Amy: Okay, I’ll let you know.
Patrik: They’re the first practical steps. If you can merge the two. Number one, the people who considered him for a lung transplant in the first place and number two is current treating doctors. If you can get the two on one table and when I say on one table, it could be just a phone call and that’s how you can make things happen. The other things you need to ask is what I just mentioned. You need to ask them how they think they can get your brother or husband off the ventilator with 17% of lung function.
I’m saying it’s impossible but it will be very, very, very difficult. You really need to start asking the difficult questions here. The truth will set you free. It’s probably not what you wanna hear but the reality is if you ask them, how do you think you can get my brother off or my husband off the ventilator with 17% lung function, you will be expecting an answer and you need to start asking all those difficult and uncomfortable questions to shake things up a bit.
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Amy: Okay. I can do that.
Breanna: Can you do that Amy because I will be more than happy to get on song with you while you’re talking with these doctors. If you can ever get a hold of them.
Patrik: You need to. You will need to.
Amy: I am not afraid to ask these questions at all.
Patrik: Yeah. Asking the right questions will make all the difference because at the moment, it looks like it’s just in a stalemate where they’re sticking around and making sub-acute care. Sub-acute care is moving him further away from high acuity which is where he needs to be at this stage.
Breanna: Can you do this Amy? Can you do this? Yeah? Awesome.
Patrik: Also, don’t be discouraged if you’re not getting anywhere in the next 24 hours, don’t be discouraged. It may take a couple of attempts but as what I refer to as a client of a hospital, you have every right to be demanding and you have every right to get the best care and treatment for your husband. They have a duty of care and that duty of care includes talking to you, includes-
Patrik: Right. I know they’re trying to hide. I know. I know the system very well but it will take a little bit of effort but you will get there. It’s just a matter of making some time and saying, “Okay, they’re going to be there every day between 9:00 and 10:00.” Or whatever the case may be and you’ll be there and you’ll pin them down.
Breanna: Because I’m tell you right now Amy, Lolita and Janet cannot get him on lung transplant list. His nightly nurse cannot get him on a lung transplant list. The only people that can do that are Arvin and the doctors at that hospital.
Patrik: Move from both ends, talk to the lung transplant centres but also talk to the lung transplant people who considered him in the first place.
Breanna: Okay. And Patrik, how do they typically move a ventilated patient?
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Patrik: That is not an issue. I can tell you quite frankly they’re flying people around the world on ventilators or on other life support devices. From our end, we’ve been involved in organising care flights even internationally. That would be my least concern. That’s happening on a day by day basis. If he’s going two hours, three hours away from where he is now, I’m not worried about that in terms of making it happen from a logistical point of view. I’m not worried about that.
Breanna: If we can’t make it happen in Tempe, Arizona, would he be considered somewhere else, if we could get him there?
Patrik: You mean like outside of the state?
Patrik: That question I can’t answer to be honest with you. I would look in your state first, I would imagine that a resident of a state would be given priority within the state. I would imagine that’s the case. I do know from the work that we’re doing that sometimes patients go interstate. I haven’t seen it for a lung transplant but I have seen it for other medical situations. I wouldn’t rule it out but I would imagine that the states have a duty to look after their residents first.
I would try within Arizona first and if you feel like this is not going anywhere then you could look at other options. I would definitely try your state first.
Breanna: Okay. Thank you so much.
Amy: Thank you Patrik.
Patrik: You’re very welcome. I will talk to you soon. Please let me know if you have any questions or if you’re not getting anywhere with this, please let me know but I think that you will be getting somewhere with this by being persistent and by starting to talk to the right people.
Breanna: Okay. And if we have to consult you again Patrik then it’s one of those options of two days four days? Is that similar to three day or can that be broken up over today and next day?
Patrik: Broken up. You are in control when you wanna use this. You are absolutely in control. I will send you the options in an email.
Breanna: Okay, awesome. Thank you. God bless you.
Patrik: You’re very welcome. All the best for now. Take care.
Breanna: You too. Amy give me a call.
The 1:1 consulting session will continue in next week’s episode.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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