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 one of my clients and the question in the last episode was
You can also check-out last week’s episode with Andrea by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer the next questions from one my clients Andrea who has her 34 year old sister in Intensive Care with non-Hodgkins Lymphoma and a stroke.
Andrea and her family have been in an extremely challenging situation with her 34 year old sister clinging on to her life in Intensive Care. To make matters worse, they have a negative Intensive Care team to deal with!
Today’s questions and excerpt from the 1:1 consulting and advocacy session is
How quickly does a CT or MRI of the brain need to be done after a stroke?
You can also check out previous 1:1 consulting and advocacy sessions with me and Andrea here.
Andrea: Cause I’m trying to understand. Cause we experienced this before. I’m just trying to educate myself.
Patrik: There is a huge difference between brain death and brain damage, I can’t stress this enough! In fact there is no correlation between brain death and brain damage. You can often live with brain damage but you are going to die when you are brain dead. Therefore there is a huge difference in the two.
Knowing and understanding the difference is key!
Andrea: I know, “doctor Google” isn’t the best source of information. But there are certain websites out there that have got good information on that. That are, I think, respectable. Like … anyway, doesn’t matter what my thoughts are. But anyway, yeah, she’s got brain damage and I think she’s got quite a bit of brain damage. They think, having the lymphoma, which they think is the underlying cause of everything, and they think she’s got lymphoma in the neck. And, again, how can you tell she’s that’s lymphoma in the neck? Those don’t spread. They could just find out by feeling it, but they haven’t done a CT scan.
Andrea: They haven’t done a CT scan since last, God knows, July. She has active cancer cells. Anyway.
Patrik: Alright. Well … well that … With the CT scan, she had a CT scan after the stroke?
Andrea: She’s had a … she’s had a … After the stroke, four days later they did an MRI in her brain. They did an MRI and CT scan on her spine, initially. And she …
Patrik: Yes, you said that, yes, I remember.
Andrea: I think it was an MRI on her spine, and then when I said to her doctor, “Why didn’t they do an MRI on her brain?” A stroke is brain related. I get we should have done it, but we didn’t. Cause of the weekend, right? Anyway, I am very, very, frustrated with the process, the system. And the doctor said, her actual treating doctor there, her haematologist, said, “That, well, we thought it had a tumour in the spine, and that caused the stroke.” And I’m thinking, “Well, there was no evidence of that. In the scan on her brain.” And one of these registers said, “We should’ve scanned the brain, I’m sorry.”
Patrik: Absolutely. And, just let me clarify again, she is at St. George Public?
Andrea: She’s in St. George Public.
Patrik: Yeah, Yeah. And, do you know, who is the ICU Consultant that you’re dealing with at the moment? Have you got a name?
Andrea: I don’t remember his name. He’s new, he started on Friday.
Patrik: Right. That’s okay. If you can give me some names it might help, because, there’s a good chance I might know some of them
Andrea: Yeah, I think his name … he’s an Asian guy, I think he’s … Dr.xxxxxxxx …
Patrik: Doesn’t ring a bell. What are they telling you is next? What’s their sort of …
Andrea: Well, they think that she’s deteriorating, cause she’s got a very high temperature, like a 39C. (102.2 F)
- PEACE OF MIND, CONTROL, POWER AND INFLUENCE EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD POSSIBLY FACE IN INTENSIVE CARE!
Andrea: And they think it’s the lymphoma causing it, or the brain’s not regulating her temperature. She’s going up from 38 to 39. She’s coming down to 37 and then just up again. They’re giving her, I think Panadol, I think they gave … They’ve got her on a problem, because if they give her Panadol she goes to a low blood pressure.
Patrik: Right. And didn’t you say her liver is going off as well?
Andrea: Yeah. I think it’s …
Patrik: Yeah, yeah. And the Panadol is certainly not conducive for an already impaired liver.
Andrea: Right. They’re giving her Panadol. I think they’d given it to her in tablet form yesterday, cause they didn’t want to give it intravenously. I think today they’re doing it intravenously.
Andrea: I don’t know.
Patrik: Okay. Is she being fed? Do you know whether she’s getting any nutrition?
Andrea: She’s getting nutrition. Yeah.
Patrik: Okay. So she’s getting nutrition with nasogastric tube in her stomach?
Andrea: Yes. They did one going through her nose, correct.
Patrik: Has she got it in her mouth?
Andrea: No, the tube’s up her nose.
Patrik: Okay, okay. Yeah. I’m surprised that they are not giving them Panadol through the nasogastric tube, rather than … they are giving it IV. Doesn’t quite make sense. Because if she’s tolerating her feed, there’s no reason why they need to give Panadol intravenously. They can, and it probably works a bit quicker. But, it’s … it’s up to them of course. But normally, if somebody is tolerating nasogastric feeds, you should be giving medications in tablet form, if you can. Just less risky.
Patrik: Is she getting IV antibiotics, for the infection?
Andrea: I think she’s getting antibiotics, I don’t know which ones. They think it’s not an infection cause they’ve taken … I asked, “Are you taking blood cultures?” They go, “Yes.” They go, “We think it’s the lymphoma playing with her temperature, and also possibly the brain being damaged not regulating her temperature.”
Patrik: Yep. Now, with the assumption that her brain is not regulating her temperature, have you … I think we’ve talked about that on Friday, have you spoken to a neurologist yet?
Andrea: No. No.
Andrea: They came around on Friday, but we missed them.
Patrik: Because, normally when the brain can’t regulate the temperature, there’s often something wrong with the brain stem. Okay? I’m not a neurologist, by any means, but that’s why I think it would be really worthwhile for you, number one, to speak to a neurologist, directly, and number two, ask for a CT or an MRI report. And that often, just reading through it, then you could, maybe, do some further research. Are you aware that you’re allowed to ask for medical records? You are entitled to …
Andrea: Yes, yes. Well …
Patrik: As the next of kin, medical power of attorney, you can ask for them.
Andrea: I … I asked, I don’t know about the records, but I actually … I’ve heard that you … I can ask for her file. I asked, and I sent it to her haematologist, this Thursday, or the Friday … or the Friday I sent the request. And I go, “Listen, I know what you think.” And I go, “But I wanna get a second opinion. I wanna engage a neurologist. Just to look at her scans.” And he’s like well … and I go, “Listen, I need to live the rest of my life knowing that I’ve done everything for my sister and that’s the way I sold it to him.” And he understood completely. And, I go and they got all her brain scans and her CT scans and her MRIs. I’ve got to just get home. I just need to engage a neurologist, and they go, “We can appoint one.” I go, “No. I want to find one myself.” I go, “I want an independent person.”
Patrik: Yeah, yeah. Because, that’s where it could be both, it could be the lymphoma. Now, what you should be asking as well, and I think that should almost be a daily question, of you, to them. So, one thing, when I looked after haematology patients in ICU, over the years, one thing that has always been … that has always been the biggest concern for those patients is the number of white cells and where the patients are neutropenic, we’ve talked about this briefly on Friday.
Patrik: What happens is, especially after chemotherapy or radiotherapy, and also because of the nature of that disease, the number of white cells may drop significantly. Do you what the white cells … have you heard of the white cells in the blood?
Andrea: They’re not the platelets, they’re the …
Patrik: They’re not the platelets. They’re not the platelets. They’re not the haemoglobin. The white cells in the blood are basically responsible for the immune system.
Patrik: Okay. For example, in a healthy person, you catching an infection, you got the flu, whatever. Your white cells go up to … to fight the flu. Right? In a patient with sort of Non-Hodgkin’s lymphoma, there is a very good chance that the white cells are being lowered. Meaning, that the body … the body has no reserves to fight an infection. And that’s why I said to you on Friday, if she has a temperature that may not necessarily be a bad sign, because it’s a sign that the immune system is working.
Patrik: Right. The worst thing that can happen with, sort of, Non-Hodgskin’s lymphoma patients is, you’ve got a patient, that’s got an infection, that doesn’t have a temperature.
Patrik: Right. Because, that’s a sign that there’s no immune system left.
Andrea: Right, yep.
Patrik: So, from that perspective. I almost see, your sister having a temperature as not necessarily as a bad sign. Well, you don’t want to have an infection but, on the other hand, the body’s actually attacking it.
Patrik: Right? You may want to ask what her white cell count is like, and what her neutral cells are like. And again, I’ll put that in an email a bit later, so you’ve got that in front of you. Patients who are neutropenic, in particular, they have no neutropenic cells, and that’s, sort of, a sub-group of the white cells. But, patients who are neutropenic they need to be isolated away from all other bugs in ICU, because that could be deadly, if those patients catch another infection, from another patient next door, or that sort of thing.
Patrik: So that’s, sort of, a question you should be asking, in terms of, “Oh, how is her immune system?” Then go into the white cells and the neutral cells and see what they say.
Patrik: Right? Haemoglobin. Do you know what her haemoglobin is like?
Andrea: I think the lady said it was 60, 63.
Patrik: That’s low.
Andrea: Is it?
Patrik: Are they trying …
Andrea: It’s 60 or 80, I can’t remember the numbers.
Patrik: Alright, even 80 is low, even 80 is low. The cut off for transfusion, depending on the hospital, is usually around 70. That’s the cut off for a transfusion. For 80, they may not transfuse her. But, as soon as it goes down to 70, they may transfuse her. Do you know whether she is still on inotropes or vasopressors, like noradrenaline? Or, I can’t remember whether we’ve discussed that.
Andrea: Wait, what’s that, sorry?
Patrik: Okay. Do you know whether she’s still got a low blood pressure?
Andrea: Now I think it’s okay.
Andrea: It goes up and down. Her blood pressure goes up and down.
Patrik: Do you know whether they’re supporting the blood pressure with medication?
Andrea: Yes, they were, yesterday.
Patrik: Right. Okay. If the haemoglobin is low, there is a much higher chance her blood pressure is being low. Right? Often what happens is, if blood pressure is low and haemoglobin is low, they start patients on inotropes/vasopressors, which is something called noradrenaline (Norepinephrine) to get the blood pressure up. When they start transfusing a patient, giving a unit or two units of blood, haemoglobin goes up, maybe 80 or 90, and maybe the inotropes/vasopressors come off, because with the higher haemoglobin the blood pressure can actually produce a higher blood pressure.
Andrea: Right. Okay.
Patrik: Might sound complicated, again, I’ll put that in an email so you’ve got that in front of you. But, another thing you’ve got to keep in mind, if they are using inotropes/vasopressors and ventilation are life support. Without that, life is not sustainable, often.
Patrik: Right. So, just keep that in mind. The other thing that I’d like to point out is, for somebody to wake up, it not only takes … takes, taking away sedation, not giving morphine, but it also takes things like stimulation. Are they doing anything to, sort of, stimulate her, are they giving her, for example, physiotherapy, are they sitting her up in bed, do you think they’re doing all of that?
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Andrea: They sent her the Physio to do Physio on her lungs.
Patrik: Yeah, yeah.
Andrea: Because she had some … I think she had a pneumonia at all, I don’t know, she had some …
Patrik: I’m … I’m sure she would have.
Andrea: They’re doing that. But, I don’t understand why they’re not doing physio on the rest of her body …
Patrik: Yep, exactly. Exactly.
Andrea: I get … I heard they started doing physio on her left side, which is paralysed. And, again, not yet.
Patrik: So, and when …
Andrea: They try to sit her up, so they can get the fluid out the lungs.
Andrea: That’s the reason why, but not for stimulation purposes.
Patrik: Okay. When did you ask about the physiotherapy? When was that?
Andrea: I think that was on Thursday.
Patrik: On the Thursday. Okay. I … from experience, over the weekend, they only treat, mainly, just physios, people who need just physios. But, again, tomorrow is Monday, maybe you should ask again, to see what they’re saying. Taking sedation away, not giving Morphine, that’s one thing, but then trying to stimulate people, it’s … it’s the next step. And sitting up … sitting up, that sounds good to me.
Patrik: Would you say, that in the last three or four days, her neurology has changed?
Andrea: Her neurology …
Patrik: Her neurology meaning … do you think she’s, at least, a little bit more awake?
Andrea: No. They actually think she was declining. But I … when I talked to her cause they actually put her on the full machine for respiratory as well.
Patrik: hey had put her on what?
Andrea: The full … the machine …
Patrik: Oh, yeah, okay.
Andrea: Her lungs. They put her at full …
Patrik: Okay, okay.
Andrea: It’s, like, “Why are you?” Cause, wouldn’t that make your lungs lazy?
Patrik: Yeah, yeah, yeah.
Andrea: Over time?
Patrik: It would.
Andrea: Yes, that’s what I thought. I mean, I’m not trained. I mean, it’s just logic. If a machine is doing something for you, you become lazy.
Patrik: That’s right. But, but, there are … and what was the answer to that question? Did they tell you why?
Andrea: To give her lungs a break, cause she’s working hard.
Patrik: Yeah, yeah.
Andrea: And I … I said to them … and I … cause I’ve asked, which part of the machine is her breathing, so I can see what the vitals are, and then, I’ve noticed, when I sit down, I talk to her, she starts breathing on her own. She’s …
Look out for next week’s episode where I help Andrea in her next steps when it comes to asking the right questions in Intensive Care!
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
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- 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)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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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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