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 check out last weeks question 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’s sister is currently ventilated and in an induced coma after a stroke which might have been a result of complications from cancer treatment for non-Hodgkins Lymphoma such as radiotherapy and chemotherapy.
There has been a delay of three days after the stroke since she had a CT scan of the brain which is a big concern, because it delayed the diagnosis.
So in today’s episode of “YOUR QUESTIONS ANSWERED” Andrea wants to know if her sister can survive.
Today’s questions and excerpt from the 1:1 consulting and advocacy session is
Is three days a long time not “waking up “ after an induced coma with a stroke in Intensive Care?
Patrik: And to put this in perspective for you. Every ICU team is negative and it doesn’t matter whether somebody has Non-Hodgkins or a Pneumonia, it doesn’t matter they’re all negative.
That’s something that a lot of families can’t come to terms with and I agree with that. The biggest challenge in ICU is, no ICU team is ever going to tell someone, ah look we’re definitely going to cure your mom, your dad or your sister, it’s not going to happen.
They will never say that, never ever. And that’s why it’s so important that you do your own research and you know… and be hopeful. Nobody can guarantee you the outcome but the way I look at those situations is that I believe that no matter the outcome it helps if you have hope, and it helps if you are positive.
And that’s very challenging. I mean the situation your describing is very challenging. But at the same time being positive and being hopeful I believe helps. Right? Now again to put this in perspective for you.
Somebody who’s been in and induced coma for four days and doesn’t have a stroke might not necessarily wake up straight away. So if your sister didn’t have a stroke but was in an induced coma for something else, you know for pneumonia or for whatever else, she may not wake up after three days, alright? So, that’s number one.
So the stroke is probably putting a delay on that. We can appreciate that. But at the same time there’s hundreds of patients every day that come out of an induced coma with no stroke, that don’t wake up after three days.
Andrea: Right yeah.
Patrik: So, that’s what I’m saying. Three days is nothing and it’s not a long time by any means.
Andrea: Yup. I agree completely. Considering her liver is not functioning well either. You know, my experience at ICU is you actually don’t ever want to end up there. Because you feel like, you actually walk out of there dead. Like what are the statistics of people going in there and walking out alive?
In her situation I mean, they’ve treated all these symptoms and put lots of drugs and drugs and drugs into her, that it’s impacted her liver now.
Patrik: Do you know what she had in terms of sedation do you know?
Andrea: No… I think…I’m not sure-
Andrea: I think so.
Andrea: One of those two, I’m not sure.
Patrik: Yeah, no, no. And I think it’s important that we clarify because depending on what she had it may put another delay in on how long it will take for her to wake up.
So Propofol is a short acting sedative. What it means is, it’s quick on the onset but it’s also quick to ween off once it’s taken away. So patients on Propofol, especially when they have general anaesthesia, they wake up within half an hour after it’s been stopped. Okay? But on the other hand, if she had Midazolam, it’s a long acting sedative. Meaning if they stop it and especially if she’s got liver issues, that Midazolam might still be in her system for the next three days.
Andrea: Right yeah.
Patrik: Those are questions I think that you should put forward to the team. What sedatives she’s had. And the other thing you could put forward is… Do you know whether she was on Morphine or on Fentanyl?
Andrea: She wasn’t on morphine. What’s Fentanyl?
Patrik: Fentanyl is kind of similar to Morphine it’s a very strong pain medication. It’s probably a little less taxing on liver and kidneys. But it’s still a very strong pain killer like Morphine, similar to Morphine.
Andrea: Right, okay. I presume- I don’t think it was Morphine, I think it was the second.
Patrik: Fentanyl probably.
Patrik: I’ll send you an E-mail after we come off the phone with those drug names so you can ask that.
Andrea: Oh yeah, that’d be great, thank you.
Patrik: So, and again, whether she had Morphine or Fentanyl, especially if her liver is impaired, those drugs delay waking up as well. So in order to determine the impact of the stroke, all sedatives and all pain medications need to have gone out of the system first. Right? And then you can make an assessment, you know, how bad is the stroke?
The other question, and I don’t know whether you’ve discussed that with your sister at some point, you know what would she want in a situation like that? Is that something you’ve discussed with her?
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Andrea: We have never discussed this. No.
Patrik: That’s okay.
Andrea: I mean she said to her haematologist, “I will fight to the end, no matter what it takes.” So we, we-
Patrik: And that’s probably enough, that’s all you need to know.
Patrik: You know that’s probably enough for you to make decisions in her best interest. Right? Are you her medical power of attorney?
Andrea: I’m her next of kin.
Patrik: Your her next of kin.
Andrea: Um…Yea, I mean we didn’t have anything organised.
Patrik: Yeah. No no. If you are her next of kin you are probably the medical power of attorney as well. Are you the one signing off consent?
Andrea: Well yeah, someone in the family. Whether it’s myself or-
Patrik: Okay yeah, well, okay.
Have they brought up things like NFR? Do you know what I mean with NFR?
Patrik: Right. NFR stands for not for resuscitation.
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Andrea: -yes they have. They did, they did at the first part of the hospital. The doctor said because she’s so ill with the cancer and stuff, they think it’s spread I actually don’t think it’s spread. I think they’re just trying to blame the Lymphoma because they have a lot of unknowns.
They said not for resuscitation, I thought about it. And then I came back the next day and said no, can you please reverse that because now my decision is you resuscitate her.
Patrik: Good! Good. And again that is in line with what your sister said.
Andrea: With what she said.
Patrik: That’s right. And I’m not saying that either or is right or wrong. It’s personal preference. I don’t agree with hospitals making that decision in the first place.
Andrea: Their head intensivist has said, “you know I think that she may”; and but I’m thinking well, he instructions to the haematologists was whatever it takes. And that’s the way I- you know, you fight to the end.
And if she doesn’t come back, at least give her a chance to try.
Patrik: Right that’s right and if for whatever reason you think that down the line she is suffering. You feel like she is suffering a lot by going through whatever she’s going through, and now might be the point to bring up this NFR again because we don’t want her to suffer anymore.
Again that’s your decision, right? And you can always go back to that and you can say, “hey, hang on a sec, we’re not winning here, you know she’s suffering, maybe we should talk about NFR again”.
But again that should be a discussion process rather than just ticking some boxes, you know?
Andrea: I understand. We’ve stood strong.
Patrik: Yeah, good, good.
Andrea: By her.
Patrik: No, no, good. What are the next steps from their perspective?
Andrea: Well, I think the next steps are just wait and see what will happen. If something catastrophic happens and then she passes away or does she wake up?
Andrea: Well he said because she’s had bleeding from the back side, that they’re really reluctant to put her on her blood thinner, because they’re scared that she’s going to dilate. Which is concerning because that could create a blood clot.
Andrea: Because her blood is all over the shot, like, she’s got hardly any.
Patrik: That’s right.
Andrea: So I’m a bit concerned for her whether they’re not treating her properly. But if they do they’re scared that she’ll bleed again.
Patrik: Yeah, and that is a risk. I guess at least from your E-mail you’ve asked for the calf compressors which I think is good, but you are saying she wasn’t on them in the first place which is concerning. Because any neurological patient that can’t have anti-coagulation or blood thinners should be on the calf compressors.
Andrea: What’s the calf compressors?
Patrik: They’re-just reading through your E-mail again didn’t you mention somewhere in your E-mail-
Patrik: Oh that must have been another client, sorry.
Andrea: That’s okay.
Patrik: So what happens is most neurological patients who are at risk of bleeding; and I when I say neurological patients I mean anybody with a head injury including stroke, they can’t go on blood thinners because of the risk of bleeding. But they need to have some calf compressors. Basically what those compressors are; they are putting pressure on the calf’s to keep the blood flowing, especially if you are lying in bed 24 hours a day.
That’s one way to prevent the blood clot.
Andrea: Are they like those stockings? Or is there a machine?
Patrik: It’s usually stockings and the machine.
Andrea: No I don’t think she’s on any-
Patrik: Right. You may want to check that. Again I’ll send that in an E-mail. Those are the things you want to check. Do you know what her haemoglobin is like?
Andrea: No. But I could find out.
Patrik: Right, right. And you said she had blood transfusions.
Andrea: Yes. I think her platelets are quite low. At one point they were .1 or whatever, I don’t know platelets or haemoglobin because it’s two different types of blood-
Patrik: It would be most likely- the haemoglobin can’t be .1 that would be too low. It would be non-life sustainable.
Andrea: Right, so it must be the platelets.
Patrik: So it might be the platelets. Which also then means she doesn’t need a blood thinner. Right? Because if her platelets are low, then she doesn’t need a blood thinner because if anything she is at risk of bleeding.
Andrea: Right okay.
Patrik: So but she might still have the calf compressors. You may want to ask that question. But if her platelets are low she is at risk of bleeding if anything.
Now with the stroke, do you know whether they were haemorrhagic strokes or whether they were thrombotic strokes? Do you know what I mean?
Andrea: I think the I-one… um…
Patrik: The thrombosis…or blood clot?
Andrea: I think it was a blood clot one, I think. They don’t know actually. Yeah, I think that they are Iso- Iso- the blood clot one- No- no- I think that they- I don’t know actually… I don’t remember.
Patrik: That’s okay, and they must know. And the reason I’m saying that… If she had a bleed in the brain, they can see that in the CT. Right?
Andrea: I think they said that she had a stroke and that there was a little bit of bleeding, in the brain.
Patrik: Right, right. And it wouldn’t surprise me again, with platelets being low, she is at risk of bleeding with the platelets being low. So it would make sense that she would have a bleed in the brain rather than a blood clot.
Patrik: What are they doing at the moment in terms of chemo therapy or radio therapy?
Andrea: They are not treating the cancer no. No chemo and no radio therapy. But my concern is after doing some research last night which is how I found you; radio therapy if you do it to the throat or the chest or the head you’ve got in the first five years a high chance or having a stroke. Is that right?
Patrik: Look I’m not- I can tell you I’m not the expert on cancer treatment, I’m not. I can pretty much tell you anything that’s happening in ICU. I’m not the expert in long term cancer treatment or outcomes or side effects. That’s not my area of expertise.
Andrea: Yeah. I understand. Yes. So anyways, because I was just wondering. They’re causing the Lymphoma-for that you know, causing everything, but I actually think, well sure the Lymphoma’s triggered everything, but I think it’s the treatment as well-
Patrik: For sure, for sure.
Andrea: -you know, because it was really high dose, high dose steroids. And the doctor was really closely monitoring her and he said you know normally you put someone four days on four days off. And she was on consistently for three four weeks and she started getting headaches so one day she actually stopped taking it. But then she felt really awful so she started taking it again.
Patrik: What steroid is she getting do you know?
Andrea: I don’t know what steroids? She’s getting steroids but it’s not to treat her Lymphoma it’s just to keep her organs-
Patrik: Yeah, keep her- yeah, yeah, yeah.
Do you know what she took at home in terms of steroids was it Prednisolone, Hydrocortisone or Dexamethasone?
Andrea: I think it was, I think it was pre- that first one.
Patrik: Prednisolone. And do you know how much?
Andrea: I think that it was five, five, the highest dose-
Patrik: The highest dose that I’ve seen can be up to 15 but five is still a high dose. What’s your sisters weight roughly?
Andrea: She’s probably about 90 kilos.
Patrik: 90 kilo’s so 5 milligrams is then an ordinary dose but it’s not a low dose either. It really depends, steroids are horrible drugs to take. Your absolutely right, one of the reasons why patients end up in ICU when they get cancer treatment is because of all the side effects, it’s not the cancer in and of itself.
It’s the chemo therapy, it’s the radio therapy, it’s the steroids. It’s what those therapies are doing to the body, that’s what gets people into ICU.
It’s not the cancer itself. Right?
Patrik: Have you had any sort of formal family meetings with a team there?
Andrea: We’ve had a family meeting with a team yeah.
Patrik: And how many did you have was it just one or two or-
Andrea: We’ve just had one.
Patrik: You’ve just had one.
Andrea: We’ve spoken to the ICU doctor on a daily basis, like we actually corner him, and just getting upset.
Patrik: Okay. Um… what else did you want to know, what other questions did you have?
Andrea: Just in terms of, I don’t know.
Look out in next week’s episode of “YOUR QUESTIONS ANSWERED” what other questions Andrea has regarding her sister being critically ill in Intensive Care with Non-Hodgkins Lymphoma and stroke.
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
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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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