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.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Breanna as part of my 1:1 consulting and advocacy service! Breanna’s brother has end stage COPD and now on ICU for cardiac arrest, and she is asking what makes the doctor decide to put him on sub-acute care and not on lung transplant centre. Breanna’s brother has end stage COPD in the ICU after cardiac arrest and she is asking if her brother is at high risk for a lung transplant?
My Brother has COPD and Went into Cardiac Arrest. Is He At High Risk needing a Lung Transplant?
Patrik: Okay. I’ll give you a quick background. That’s why I’m asking such specific questions. Often what happens is a tracheostomy is often being used as a vehicle to get to another hospital because ICU beds are in demand and the other facilities like where he’s probably now, they’re probably more cost effective from a health insurance point of view. Doesn’t give patients the care they need but it’s often a money saving exercise for the healthy insurances and it’s also an illegal for the ICUs to empty the beds that are in demand. A-
Breanna: But they are saying to us…they told us that they needed to do the tracheostomy because if they left it the way it was, it was going through his mouth, that that could cause permanent damage to his vocal cords and his oesophagus.
Patrik: I agree with that. I agree with all of that but the reality is if you didn’t know about the discharge to Arizona when they were doing the tracheostomy. Yes, they were giving you the medical reasons and they are accurate but what they haven’t told you is I can’t tell you how many situations I’ve seen like this before.
Patrik: They’re doing a tracheostomy they’re giving all the medical reasons and within three days, patients are getting discharged to a sub-acute or to a long term acute care facility without looking at, okay, does this patient still need ICU or is it too early? Now, in his situation where he’s got-
Breanna: Honestly, I don’t remember. Amy do you remember them ever saying before the trach that they were gonna move him?
Breanna: I don’t either. I just don’t remember ever having that conversation. They painted this rosy picture, they sold us on the trach by telling us he would be able to sit up, he would be able to take him off sedation so he could talk to us, he could sit and he could talk and he would start physical therapy. We were waiting for all this to happen as a result of the trach.
Patrik: And did it happen?
Breanna: None of that has happened.
Patrik: Okay. That to me is a clear sign that yes, they were saying all the right things and the thing that you mentioned yesterday can happen in the right environment. Everything that you’ve said, yes absolutely. Those things can happen but obviously you need to be in the right environment for all of that but I tell you … looking at that with what you’ve said like mobilisation, physical therapy, all of that, that’s all great and it should happen no matter what however in Michael’s situation what needed to happen and still needs to happen I believe is the option of a lung transplant needs to be explored.
With 17% lung function, it’s going to be very unlikely he can be weaned off the ventilator. By sending him away from what’s even further away from a lung transplant centre, is not moving towards a lung … I’m just looking at the geographics here between Tempe and Arizona. Tempe is closer to Washington isn’t it?
Breanna: Well, okay. Geographically yes. Where Michael and Amy live is in Preston, Washington which is very, very rural. I mean, they’re lucky they even have a hospital there. You know what I’m saying? They are very, very remote. Anywhere out of there is gonna be closer to the city but the city doesn’t seem to be … really give a rat’s ass doing a lot … Pardon my French but they don’t seem to give a rat’s ass about doing a lung transplant to my sibling.
Patrik: They probably can’t-
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Breanna: And we can’t our options without the cooperation of Carefield, it’s become very frustrating.
Patrik: No I understand. What I’ve done just before this call, I’ve had a look at lung transplant in Washington and there is … have of Peak-Care, have you heard of them?
Patrik: Right. They seem to be the go to people for lung transplants in Washington. Is that correct?
Breanna: We were told it’s THE CITY but okay.
Patrik: Okay. No. It’s good to have options and it’s good to explore both. What needs to happen as far as I can see going back to the doctors where he’s at the moment, I really do believe Amy you need to find out when he is being seen by doctors, if that’s happening on a regular basis and you need to get the times around that. You really will need to be there as the next step. You really do. You need to talk to them.
Breanna: What do you mean by… she left text messages, they left messages, all he did was text someone to call and he says, “Okay, I’m gonna call you or you can call me or whatever.” And then before he even had a chance to call him he says, “I’m now in emergency now I can’t talk.”
Patrik: No, I understand.
Breanna: And that was the end of it, right Amy?
Amy: Actually not until this morning he did call me later. Dr. Winston is out of town. He has his underling doctors seeing her. And usually they have meetings every day and I don’t know what they’re discussing.
Patrik: Yeah, and you need to be there. That’s going to … you need to be there. You need to number one, find out from the nurses when they see him every day, what time because there would be a timeframe at 8:00 AM or at 9:00 or between 8:00 AM and 10:00 whatever the timeframes are. Number one, you need to find out and number two you need to be there and I don’t know whether that’s possible for you. Are you there every day to see Michael?
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Amy: No. But today I stayed with him.
Breanna: It’s an hour and a half drive each day for her. She’s been going about every other. And yes.
Patrik: I see. Okay. But you can still as your next step, you can still find out what time of the day they roughly see Michael and you will need to be there at some point. You really need to make that happen. That’s number-
Breanna: Great idea Amy.
Breanna: That’s a great idea Amy and Patrik thank you because Amy if you hold their feet to the fire and ask them, I wanna know what time these doctors are seeing my brother so I can be here to move with them or don’t even say that just say when are you moving and then just show up and then show up.
Patrik: That’s inevitable. You really need to pin them down and find out the plan because you see it’s great that somebody is telling you, “Oh yeah. If you have a question tell me and I will tell the doctor.” As I said, they’re putting a wall between you and the doctor. That’s number one. Often the only way to take the wall down is to be proactive, right? And because they’re not clinical people, you might be asking a question but it might get lost in transition. Their best bet is really you need to talk to them directly and what I would be very happy to do is I would be very happy if when you are in front of them, to get on the phone with you. I would be very happy to do that. But the first step is you need to pin them down literally.
There is no way around that because the other thing that will need to happen, one way or another, once you are in front of the doctors, yes, we will need to make contact with the lung transplant centres but at the end of the day what also needs to happen is the doctors at Carefield need to make a referral. Okay, that will need to happen but at the same time you need to find out from the doctors at Carefield what is their plan and that’s something you still don’t know. Besides going to sub-acute care which I believe could be even worse and it would probably be even one more step away from potentially going on to a lung transplant.
Breanna: Let me explain this to you Patrik. Where he was at Peak-Care when he was in ICU, they do have a facility at a separate building and their campus, their medical campus. There is no campus but they do have a medical building that is called … What’s it called Amy? ACC which is … I don’t know.
Amy: Ambulatory care centre.
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Breanna: Ambulatory care centre. It is a sub-acute facility and we thought it would be better to get Michael there back into their system but what you’re saying is that…that is not the case. Is that correct? Because if he goes back to Peak-Care, I think that was our goal that he could get into this sub-acute care facility and you’re saying that’s not the way to go.
Patrik: No. It’s not the way to go. The reason I’m saying it’s not the way to go is the closer he is to a lung transplant centre, the higher the chances are he will end up in one.
Breanna: You mean geographically.
Patrik: Yes, geographically but at the same time, he could be better off at Clover Leaf Hospital, he could be better off, he could go back there if they have an ICU and even though it’s not geographically closer to a lung transplant, it could bring him closer to a lung transplant because he’s in a higher acuity hospital.
Breanna: Amy, you could request that, you could say, “Look I want him back in ICU in Peak-Care.
Patrik: I go one step back-
Breanna: Amy they’re gonna wanna get him out of there so fast because of the costs involved in keeping him there that if they put him back, you’re gonna get some action.
Patrik: Yeah. That’s exactly right. The other way you’re pointing this out absolutely correctly Breanna. Think about that. They wanted to get him out very quickly. Instead of sending him to Tempe, they could’ve put him on a lung transplant list and they could’ve sent him to a lung contender as well.
Breanna: Months ago.
Patrik: Say again?
Breanna: A month or so ago-
Patrik: Yeah, a month ago?
Amy: I had a really bad gut feeling when they transferred him and now I know why? This is exactly what I was fearing.
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Patrik: Yeah. You should always trust your gut. Always trust your gut. I’ll tell you what I have seen in the past so you really understand how I believe this should’ve unfolded from the start. You mentioned that Michael, before he had the cardiac arrest was trying to get on the lung transplant because he wasn’t doing well, he had 17% lung function and that makes perfect sense to me. With end-stage COPD, yes you do wanna go on a lung transplant list because it’s end stage and all of that.
The cardiac arrest came on the 25th of January. Then he was in the hospital system and that would’ve been the time to take the next steps towards a lung transplant. Now, having said all of that, when somebody has a cardiac arrest, some doctors might think, “Oh, he’s had a cardiac arrest. He’s high risk for a lung transplant.” That may well be the case however, that is when things need to be evaluated in detail. For example, with a cardiac arrest there is no brain damage. Can you confirm that?
Patrik: There’s no brain damage.
Breanna: Amy, he seems to have all his wits about him. I mean, he talks to us, he remembers things from our childhood. I made a joke one time about a childhood reference that we’d had since we were little and he responded to that. It was Yukon Cornelius. Remember Amy?
Amy: Yeah. I did.
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Breanna: Yeah, that’s going back to when we were like I was five and he was eight. I would like to imagine he hasn’t lost his brain function.
Patrik: Okay but a diminished brain function in a situation like this could also be a result of the induced coma so when I say brain damage, do you know … have they done a CAT scan of the brain after the cardiac arrest?
Amy: Not that I ever know of.
Breanna: I don’t know.
Patrik: Okay. Gotta find out. You need to find out. Why is this important? Somebody with a cardiac arrest has a higher risk of brain damage than other people nine times out of 10 a follow up CAT scan of the brain is happening after a cardiac arrest to rule out brain damage. Now, if Michael is talking, that’s a good sign. That’s definitely a good sign. By brain damage I mean people are not talking, they can be in a vegetative state because of the cardiac arrest because of-
Breanna: Oh, no he is not that state.
Patrik: That’s a good sign but you would still wanna find out whether he’s had the cardiac arrest … whether he’s had a CT scan of the brain following on the cardiac arrest. You definitely do wanna find that out.
Breanna: I mean, he’s very agitated, he pulled out his IV a few times, he pulled his trachea once but that is my brother’s personality. He has a short temper and no sixth sense.
Patrik: I can assure you that patients after a prolonged intensive care, a prolonged induced coma, they are confused and there is a big different between ICU confusion or ICU delirium which is temporary and brain damage. There’s a big difference there. The ICU delirium, the ICU confusion is temporary. Brain damage is life or can be life-long or is prolonged. That’s why it’s so important to find out if they’ve done a CAT scan of the brain after the cardiac arrest.
Breanna: Alright but I’m sure that Amy would agree, I mean, I’ve known him my whole life. She’s been married to Michael for what? Over 20 years Amy? And I need to… consent what has been done to him. Would you agree Amy?
Amy: You went out there a minute. What was your question?
Breanna: No, I was saying you’ve been married to him for over 20 years. I’ve known him for my whole life. I would be very, very surprised if anyone told me that he’s had any brain damage. He seems to be the same old Michael he’s always been in terms of getting out in this horrible situations.
Amy: Yeah, he’s had worsts than now.
Patrik: Okay. That’s good to know. You should still ask if he had a CAT scan of the brain. You should still ask. Moving forward and taking practical steps. I go back to what my ideal scenario looks like from similar situations that I’ve seen. Again, somebody with end-stage COPD needs to go on a lung transplant list as soon as possible. He’s tried that before the cardiac arrest. Well, the cardiac arrest got in his way but then he was in ICU and they didn’t work him up for a lung transplant potentially thinking we’re inside a cardiac arrest, he’s high risk but it doesn’t look to me like he’s been properly assessed by a lung transplant team. That hasn’t happened yet, has it?
Breanna: THE CITY told us that he had to physically be at THE CITY to be worked up. We were like, okay, I guess our next step is trying to figure out how to get him to THE CITY but Amy to look into that this week with William and she was told that, “Well, he can’t come up here in a ventilator“. Who is that we’re doing lung transplants on if they’re doing them on patients that are not on a ventilator? That just doesn’t make any sense.
Patrik: Oh, absolutely. There are many patients who are on ventilators before a lung transplant and potentially after lung transplant as well. I really don’t understand why they would even say that but here is-
Breanna: Well, they told her that he had to be walking on his own. Well, how do you walk on your own when you’re on a ventilator?
Patrik: That’s right. You could but after cardiac arrest it takes time to build up strength. It’s not impossible to walk on a ventilator but patients normally are severely weakened. It’s the exception of the rule. It’s the exception to walk on a ventilator not the rule but going back one step, when patients are on ventilators for end-stage COPD, that’s something I mentioned with you Breanna on our first call, they can be put on a therapy option called ECMO. Basically, what that-
Breanna: Yeah. They do have that.
Patrik: Right. What that does is it’s completely taking over the function of the lung until if Michael was on a lung transplant list until a donor lung becomes available. That can’t be … you can’t be on ECMO much longer than three weeks but at least it would be buying him more time and with end-stage COPD, once a patient is on a lung transplant list, they’re often given priority. Donor lungs or donor organs I should say are usually allocated on a priority basis.
Breanna: Right. And we were given the impression by his initial pulmonologist and doctor that he would be a priority on the list because of his age and then we found out his condition is genetic so that should help him too, right?
Patrik: Totally. Absolutely. Age, if you’re saying it’s genetic, that means he’s a non-smoker. I would imagine that’s all-
Breanna: Oh, no. He worked in a smoke environment but he wasn’t smoking.
Patrik: Okay but even so, that shouldn’t stop him from having a lung transplant. When he was at Joshua Tree, the option of going onto a lung transplant was never given, was that right?
Breanna: Well, it was given to him before this all happened and Michael was aware of it and we found notes … Amy found notes on his desk when he was in hospital that showed that he had been in contact people at THE CITY that we were talking told … actually no, we were told to contact. We contacted them on our own and found out that the doctor had submitted him for that and that Michael was looking into it but he was told by his pulmonologist that he had to lose weight.
He was given the impression that if he lost weight, he would qualify. Well, how does someone with 17% lung function lose weight? I mean, he had to starve himself. That would’ve led to much worsts than that. That just didn’t make sense to me. It doesn’t makes sense to me.
Patrik: Yeah. No, you’re absolutely right. Then can you go back to the doctors who were initially giving him the option to go in a lung transplant list? Do you have contacts there?
Breanna: Yes. Well, I don’t know because he considers himself no longer Michael’s doctor since they transferred him.
Patrik: Yeah, sure. But it’s still worth contacting them. It will be still worth contacting them absolutely.
Amy: For what reason?
Patrik: For what reason? He was given the option to go on a lung transplant least before this all happened-
Amy: Carefield was gonna reopen.
Patrik: Say it again.
Amy: Carefield was gonna reopen to get him on the lung transplant.
The 1:1 consulting session will continue in next week’s episode.
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- How to ask the doctors and the nurses the right questions
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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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