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.
How to be patient and positive when your loved one is in ICU with cancer, sepsis, stroke and is not “waking up” after an induced coma!
Today’s questions and excerpt from the 1:1 consulting and advocacy session is
Patrik: Have you had any sort of formal family meetings with the ICU team there?
Andrea: We’ve had a family meeting with the ICU 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.
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Patrik: Yeah, yeah, yeah, yeah. One question I have is, do you know whether she’s on any Inotropes/vasopressors? Do you know what I’m talking about with Inotropes/vasopressors?
Patrik: Do you know whether she has a low blood pressure?
Andrea: Yes. She’s had low blood pressure, she’s had a high pulse. She’s had bleeding, she’s had all these symptoms, reactions that they’ve treated and consequently has killed her liver, essentially and impacted her blood count.
Like your filling a person that’s sick with all this medicine. Like there’s only so much that a body can take.
Patrik: When you say that she has bleeding, where is she bleeding from?
Andrea: She was bleeding from the back side.
Patrik: Okay. From an open wound or-
Andrea: No, no, just through the skin.
Andrea: So they wanted to get the renal doctors here, but then they were scared to do a colonoscopy. Um…then she would die on the table.
Patrik: Yeah. Not with low platelets, you can’t do a colonoscopy with low platelets. It would be too risky.
Andrea: Right okay.
Patrik: The risk of a severe bleed with low platelets is too high. And, so when I-
She had stayed in ICU before, after a stem cell transplant because she developed sepsis; and the cause was the Vascular Catheter because they don’t need it, and they just left it in there.
Because the haematologist said, “later on in the track, your cancer might be so big that we’ll be struggling to put it back here, so I suggest you leave it in”.
Patrik: Why is she having the Vascular Catheter just for the Chemo Therapy?
Andrea: Well yes but she stopped care, she didn’t want to have chemotherapy.
Patrik: Yeah. Yeah, yeah. Are they using the Vascular Catheter or had they used the Vascular Catheter for dialysis as well?
Andrea: Uh, No.
Patrik: No, okay, okay.
Andrea: They removed it. They removed the Vascular Catheter because I think it was the source of the sepsis.
Patrik: It could have been one source of the sepsis I can tell you that many patients who have chemotherapy end up with sepsis because of the immune system being non-existent basically. And that’s how they end up being septic and then that’s the reason for them often to go into ICU.
With the sepsis and with the low blood pressure, do you know whether they are treating the low blood pressure with medications?
Andrea: Yes. They treated everything with medication. She’s got a high temperature at the moment, so there’s some form of infection, virus or whatever, occurring. There is very reluctant to give her medicine because her liver function is quite low. So they’re treating her with home remedies, like wash cloth and that sort of stuff doesn’t work.
Patrik: Well, well, you see having a temperature in a situation that your sister is in is actually not a bad sign, especially if her immune system is lowered. Many patients, you know I mentioned neutropenia earlier, if patients are neutropenic, they don’t have a temperature. Because they probably can’t fight an infection.
Now if your sister has a temperature that means she has some reserves to fight that infection.
Patrik: Right? So I come back to the low blood pressure. When she has low blood pressure, usually if the blood pressure goes below, 90, 95, on a sort of sustained level, they will start her on some medications like Adrenaline or Noradrenaline.
Now those medications as well as the ventilator are considered major forms of life support.
Andrea: Right okay.
Patrik: So basically what it means- again I will send you that in an E-mail you may want to find out if she’s getting any Noradrenaline or Adrenaline.
And that would be for low blood pressure. The low blood pressure is probably a result of having a low haemoglobin it wouldn’t surprise me if the haemoglobin was low and it’s also a result of the sepsis, alright?
But what I’m saying, what’s important for you to know is, the ventilator and the Noradrenaline and Adrenaline are considered major forms of life support, alright?
So if that was taken away at this point in time. It might be difficult for your sister to sustain life at this point in time.
Patrik: Just to put that sort of in perspective. I think that from everything that you’re describing to me, time. Time is important, three days, not waking up, certainly concerning, but nothing that ICU’s haven’t seen before. So, if they’re telling you, if they’re telling you, you know three days if she’s not waking up, you know it’s sort of all negatives, nothing’s going to happen. Tell them, we want to wait.
Andrea: Which we have.
Patrik: Good. Good. And again, usually the best outcomes people get in terms of waking up is just by giving people time.
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Patrik: Alright? And we know that ICU’s are under pressure they need their beds, we know all of that but that’s not your problem.
Patrik: Your problem is your sister.
Andrea: Okay. That’s right yup.
Patrik: Right? And that is your main concern. Have you spoken to neurology?
Andrea: No. No I haven’t.
Patrik: That’s one of your next steps you’ve got to speak to neurology.
Patrik: Do you feel like the haematologist and the ICU, do you feel like they’re on the same page?
Andrea: I feel that they are but I did feel about a week ago that neurology and haematology weren’t on the same page. Because the haematologist was saying, I think it’s Lymphoma in the brain, that’s what’s causing the stroke. But the neurologist said it’s definitely a stroke. That they’re a bit conflicting there. I don’t know because I’ve explained to the neurologist-
Patrik: -say that again please, can you repeat that again please, so the-
Andrea: I feel that a week ago the haematologist was saying the Lymphoma spread- because when she first had the stroke and I was very upset by this, they just scanned her spine then they scanned her brain…
So she came into hospital on the Friday, she had a stroke, well of some sort they thought that it was something in the spine, the Lymphoma had spread in the spine and that was causing the stroke. And they scanned her brain four days later. I mean I’m not a doctor but if a stroke happens inside of the brain-
Patrik: -oh right straight away!
Andrea: -yeah, it’s a brain not the heart, that’s causing it right? And they haven’t scanned her brain for four days, so they thought well, there’s nothing in the spine, the Lymphoma hadn’t spread in the spine there’s no evidence of that that we can pick up on the machines and then four days later; cause’ it was on the Friday, so the weekend, they do nothing in hospitals I find, um… and then Monday or Tuesday she had her brain scanned. Which I felt was too long.
Patrik: That is- and was that in ICU or in the ward?
Andrea: In the ward?
Patrik: I’m sure they would have done it in ICU.
Andrea: ICU is different because they’re awake they’re like New York, open 24/7. The wards like, if you get sick on a Friday, you don’t want to get sick on a Friday cause’ nothing happens on the weekend.
Patrik: That’s right. That’s- different things happen in ICU on a weekend especially in situations like that. Do you feel like at that point in time do you feel like at that point in time do you feel like she should have gone into ICU?
Andrea: No because she was talking, she was okay, you know talking. I mean, she was in the ward for about a week and then apparently she had a stroke at 2:30, 3:30 in the morning but- and that’s where she moved into ICU so she was in the ward for about six days.
Andrea: And I feel that they didn’t treat her with enough urgency because I mean if someone’s had a stroke, for recovery you want to treat it as soon as possible.
Patrik: Absolutely! I mean if somebody has a stroke I mean, a CT of the brain is one of the first things they need to do.
Andrea: Yeah. I’m sure and I was surprised they didn’t scan her brain. Like they scanned her spine but they did not scan her brain!
Patrik: So I think you really need to talk to neurology and I think you should ask that question why they didn’t do a CT of her brain straight away when she had the first stroke? I think that’s a question you really should be asking. But also get a feel from the neurologist in terms of where they think it’s going. So for now I think time, and that could be a lot of time I guess the instructions from your sister are pretty clear.
Do you feel under pressure from the ICU at this point in time?
Andrea: No, no, no, no pressure.
Patrik: Good. Good. Good.
Andrea: They’re very- but her haematologist he’s got his grim news, he’s very negative. She felt that he was actually-
Because she was refractory so she never went into remission she actually felt like he had given up on her a long time ago.
Patrik: Right, right.
Andrea: So she never went into remission for the 18 months that she’s been fighting it. He’s never had a case like hers because you know, being so young, nothing’s worked… so, and she thought that he gave up.
I mean I try- I got a second opinion at our PA, anyways, so I saw a professor there that um.. you know, they would have done the same treatment. Then I started looking at john mack in Northern.
Patrik: Yeah, yeah, Peter Mac, Peter Mac.
Andrea: Sorry, Peter Mac. Yeah, so I was looking at they’re centre, like to get some treatment there and they said the last option which I think would have been very unrealistic, I was hopeful, is the US. Houston Texas there’s a good hospital there. But anyway.
So yeah, Peter Mac. She had been put her on the phone at Peter Mac because she had radiation that day, and that day she had a stroke. So she couldn’t go.
Patrik: Bummer, bummer.
Andrea: Which was really unfortunate, because Peter Mac’s meant to be really good.
Patrik: It’s got a good reputation, they’re constantly expanding so they must be doing something right but, cancer therapy on a bigger picture level is not my expertise.
Andrea: Yeah, I understand you’re just ICU.
Patrik: Yeah. Yeah. I guess for now, I’m glad to hear that you don’t fell under pressure from the ICU, that to me sounds like you know, you’ve got some time to give her the time to see what happens. You know.
Patrik: One thing that- I tell you what I’ve seen in ICU over the years especially with cancer patients right? I can’t recall ever a cancer patient having a stroke, I can’t recall that, but I can tell you what I can recall and sort of it’s almost like a golden rule in ICU that anybody with a weak immune system after chemotherapy, radiotherapy, should not go on a ventilator.
And by that I mean they should be going on the ventilator if they have to, but with a low or almost non-existent immune system it can be very difficult to get those patients off the ventilator. That’s what I’m saying.
More specifically, I mean Patients with cancer end up having radiotherapy or Chemotherapy and then their immune system is so weakened that they often end up with sepsis as part of a Pneumonia for example.
On top of that like you have already described, your sister has low Platelets, low Haemoglobin, low white cell count (WCC) and she is potentially neutropenic.
Keep in mind getting on a ventilator is risky at the best of times, let alone when you have all those other risk factors such as no immune system. Imagine you have a sepsis, Pneumonia, you have no immune system to fight the Pneumonia and the sepsis and you are on a ventilator.
Chances for survival are rapidly diminishing in situations like that which is why avoiding going on a ventilator is a good strategy to have in order to increase the chances of survival!
I have rarely seen Patients on a ventilator with no immune system survive, it’s very rare.
Patrik: That is a concern and I can tell you I have seen people coming off the ventilator successfully but if it’s more difficult in any patient group it’s probably with cancer patients with no immune system going into ICU on a ventilator. It can be very difficult getting them off that ventilator
Andrea: I’m sorry is that the machine that goes down into their lungs?
Patrik: Yes. Yes. Mm-hmm (affirmative).
Andrea: And why would they put a ventilator in because they had a stroke she was having seizures why would they?
Patrik: Okay, okay. So she had seizures did she?
Check out next week’s episode of “YOUR QUESTIONS ANSWERED” where we find out if Andrea’s sister had seizures and how it’s being managed!
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)
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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