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 intensivecarehotline.com Podcast and in the last Podcast episode we published another client interview and client testimonial.
PODCAST: MY MOM WENT ON CARDIAC ARREST DUE TO NEGLIGENCE AND THE DOCTORS SAID THAT SHE WON’T MAKE IT! HELP!
You can check out the last Podcast episode by clicking on the link here.
In this week’s episode of the intensivecarehotline.com "PODCAST" I want to share another testimonial and interview from one of our clients Shirley as part of my 1:1 consulting and advocacy service!
Shirley’s sister had a cardiac arrest in a parking lot, went to ICU for hypoxic brain injury. Shirley is sharing her sister's recovery over many months after the Intensive Care team wanted to prematurely withdraw treatment. Shirley is sharing how my 1:1 consulting and advocacy service was able to save her sister's life and give her a second chance at life!
INTENSIVE CARE HOTLINE PODCAST: My Sister had a Heart Attack and Sustained a Brain Injury. Is this the End of Life for Her?
Listen to the podcast here or read the transcript below.
Patrik: Hello, and welcome to the Intensivecarehotline.com podcast. Intensive Care Hotline helps families of critically ill patients in intensive care to instantly improve their lives, whilst making informed decisions, get peace of mind, control, power and influence. As part of our podcast and interview series today, I brought on a very special guest, Shirley.
Hello, Shirley. How are you?
Shirley: I’m wonderful. Thank you, Patrik.
Patrik: Shirley, thank you so much for coming on to this call. I really appreciate it because I know you will have so much to share with our listeners who might be in a similar situation than you were last year in September when your sister went into ICU in September. Can you share with our listeners what happened last year in September?
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Shirley: Yes, yes. My sister was sitting in her car and she was about to take off. And some people right near her, where she was located, saw her slumped over the wheel and they came and gave her CPR right away. One was a nurse and one was not a nurse. Then, the paramedics came, and they took over. And they actually got her back. She was gone, but they brought her back. So, we don’t know how long it was, maybe three minutes, maybe four
minutes. But it doesn’t take long to sustain a brain injury. And that she did, from her heart attack. So, she went into ICU. She was in ICU from 23
days.
We had lots of issues while we were there, because the doctors were trying to encourage us to just let her go. Not to resuscitate and what have
you, because of the hypoxia, because of the anoxic brain injury, where she was deprived. Her brain was deprived of oxygen for more than three minutes. They said the prognosis is not pretty, not good. But they said, “We don’t know. Because some people have come out of it, and some
people have not.” They say on the Glasgow Coma Scale, she was a three. But of course, that being the case, it meant that she was not brain dead, because brain dead is zero. You don’t get anything. So there was never a question about whether she was brain-dead or not. But they did do an EEG and saw that she did have brain activity, you see. So, she was intubated. Question?
Patrik: Yeah. And I do remember when you first contacted me at that time in September. You didn’t really know what to do next. You felt like they wouldn’t really give your sister a chance. Can you, sort of, talk more about how you felt when you and your family felt like they didn’t want to give your sister a chance? What was your reaction to that?
Shirley: Yeah. So, they were trying to push her out of ICU. I was like, “Wait a minute… wait a minute. What do you mean?” We were devastated. I felt like we didn’t know which way to turn; we didn’t know what to do. And my sister’s daughter happened to be doing some research online and she kept running right in to you. She said, “This man sounds like he really knows what’s going on.” And I said, “Well, let’s do it. Let’s hire him, let’s see
what’s going on. Let’s get him to help us. Whatever it takes. And it wasn’t until we talked to you that we had power. That we were no longer intimidated by them making us feel helpless. By making us go to… trying to push us to the point of letting her go. Bringing in the social workers, saying, “Would your sister like to stay like this? Would she want to live like this?”
And so that’s what we did and it wasn’t until we talked to you and you asked us about the different medicines because of the knowledge that you had in ICU. What kind of medicines was she on? What were they giving her? She had some myoclonus, which is jerkiness, the brain is trying to find its new pathways and so forth. It’s starting to try to control features and things like that, so they were giving her some pretty strong medicine. In fact, they gave her Propofol. So at that point they just put her in… kept her in a coma. So they were keeping the Propofol on her. Propofol, then they’d give her for pain of Barbital. They gave her what’s it, Depo, or
something for seizures. I don’t know.
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Patrik: They gave her Keppra for seizures. I just had another look through our email.
Shirley: Keppra.
Patrik: Keppra for seizures, which also has sedative effects. The other thing that I remember we talked about at the time, and it’s always something that I bring up in my consultations, as well as simply- ICU’s are short of beds, generally speaking, and often when ICU is on negative, they’re saying, “Look, we’ve got to either stop life support or we’ve got to send people out somewhere else.” They’re short of space. Without actually looking at, what does this patient need from a clinical perspective? And I do remember that this is something we also talked about at the time, in terms of, how does bed management potentially impact on prognosis?
Shirley: Oh, yeah. Oh, yeah. We had that conversation, because they says, “Oh, no.” I said, “Do you just need a bed?” They says, “No, it’s not that.” But then he gave me a scenario. He says, “We want to say that your sister graduated to the next level so we can send her to a less-acute floor or what-have-you. Or over to LTAC, long-term care and I was like- because they gave me the scenario. He said, “What if you’re loved one was in a terrible accident and they needed to get inside to you and there was no bed.” I’m like, “Well yeah, it is about the bed then.” So it
is about the bed.
And I said, “Let me tell you. I’m in corporate America and I know that this is a business. It is a hospital, but it’s also a business.” And I said, “You have numbers. You have a scorecard that you keep. You want your numbers to look good. You want to be able to say, ‘We have this person in ICU, we were able to get them out and free up a bed.’ You have a bell curve that you work with and you want to look like you’re in the upper percentile of your company,
hospital, where you really are able to turn people out and over in ICU.” I said, “We don’t want to hear anything about that.” I said, “You have 29, 30 beds here. This is a huge ICU.” I said, “You cannot possibly be having problems with that.” I said, “Unfortunately you’ve got people who are dying and basically, that’s how you’ve got beds. My one sister is not going to throw your numbers off. Your scorecard will look just fine and I need you to work with us, not against us. I thought we were a
team.”
Oh my goodness, we dealt with so many different doctors and they’re like, “Who are you? Are you medical?” No. I’m my sister’s sister. And I love my sister and I want her to have the best of care. And when we entered his view, they were like, “Who is this person?” How does he know about the medicine? How does he know about what this medicine does to this person and what to do here, when to do this, when not to do that? All he did was ask him a question and they
were like, “Wow.” I guess they were like, “We better step back.” And then we put you in on the meeting with us in our conference and they were- you told them. You said, “Well, you don’t know what you don’t know.”
Patrik: That’s exactly right.
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Shirley: I mean how could you possibly say that? Yeah. And they said, “Oh, she’s like a five or- we don’t know which way she’ll go.” And I said, “Well we don’t want a DNR. We want to give her a chance. Please don’t discuss that with us anymore. We don’t need a social worker coming in here telling us what kind of life my sister wants to have because we’ve done research also, on several cases, where people have come back to be themselves. And we’re going to give my sister that chance. And plus, it’s only been how many days?
Patrik: Exactly. Exactly. That would have been a good point.
Shirley: And now? That was September. And you want to know how she’s doing now?
Patrik: That would be great if you can tell me how she’s doing now.
Shirley: Yeah. Well, she was in the ICU for 23 days then they took her over downstairs in the same hospital and find out it’s a very good hospital brain
injury here in Maryland and they took her down to the vent unit. They did well enough in the vent unit, they cared for her. That’s all they did was that. They really, they made sure that the people were qualified to work on the vent, it wasn’t just anybody. It was a quick event for her, for the time, she was there for probably two weeks when she probably should have been there for one. But because they knew that we’re the family that we are, that we’re not going to just take
anything, they wanted to quickly move her out. We only wanted her in their facility, which was next door to the long-term care facility but it’s across the street from the hospital and it’s called Levindale. Very good. Very good. Very good. Four, five stars. It also had an intensive care unit within the LTAC.
It’s called HICU. And I think it’s called, I don’t know what it means, it’s hospital intensive care unit within the nursing home, if you will. It was in the long-term care. And she was able to take part of a programme. Go ahead.
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Patrik: And can I just say, for our listeners also, before patients go to a ventilator unit and then on to LTAC, they need to have a tracheotomy, which is
what happened in your sister’s case. She went from a breathing tube after 23 days to a tracheostomy. Because otherwise, patients can’t leave intensive care without a tracheostomy; so that was another point of discussion at the time. I remember she had to go from the breathing tube to the trach, which inevitably happened, which enabled
her to go, really, to the next step of her recovery. Would you consider that that’s what enabled her to go to the next phase of her recovery?
Shirley: Yes, yes, because they wanted us to send her before- no, no, no. They wanted us to give her a tracheostomy but we would not do the tracheostomy because we knew immediately, once they did, they were going to ship her out. That’s why she was
so long on a ventilator to begin with. We didn’t want her to be on a ventilator for 23 days, but they kept threatening to send her to a nursing home. Which is, no. No. She can’t make it there like that. So then, finally they got the intubated tube out, they went down to a smaller tube, then they went to the trach. So once she got over to- right, once she got over to- I think she was on a CPAP even before she went over to there. We were really making them do what they needed to do. And she got over to the CPAP.
Patrik: And the other thing that was also delaying probably the whole process to getting her to somewhere else was she was having seizuresstill. This is the other thing, before a patient can leave ICU they need to be able to control the seizures. Which took a while in your sister’s case, I do
remember that.
Shirley: Yes it did, yes it did. They had her on Propofol.
Patrik: Propofol, Phenytoin, Keppra, she was on some vasopressors as well because her heart, initially, was weak.
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Shirley: That’s right. They had her on that, they had her on Barbital.
Patrik: Yeah, yeah. So she was going through a lot. She was very, very sick. Very sick. And you heard all the negativity from the intensive care team but you weren’t taking it, which was really good because it paid off in the end.
Shirley: Yeah, she was unstable to be moved at that point. I mean, we had military doctors that were coming in that were travelling doctors and the nurses- the travelling nurses that go from place to place, I forget what you call them, but anyway. Yeah, they travelled from travelling nurses at some point. No, they said, “No, she’s not ready to be sent to an LTAC. She’s not ready to go there.”
Anyway, once they got her more stable, we got her over to the HICU. We got her into a programme called a coma emergence programme that they had. They worked with her for 45 days but they had to get so many points. Three: one, two, three points. Well my sister passed. It took a while, but she finally passed. And so, she was still on the trach. But she could talk. They had her pumps plugged up so she was breathing on her own. Even then, she was breathing over the vent, even in ICU. None of her brain was swelling, none of those things were happening. Her brain was not swelling, her organs were doing fine. There was no
bleeding in the brain. He said, “We’re going to give her a chance.” We’re going to give her a chance. No critical factors like that was in her brain, so we’re going to be okay. We’re going to give her a chance.
Got over to the LTAC with the HICU, not just any unit, HICU. And then they put her in the program and they woke her up and she was- she knew what day it was, she looked at me and I said,
“Okay, if yesterday was Sunday then what is today?” She was like, “Monday.” And then if today is Monday, what is tomorrow? “Tuesday.” My sister was counting from one to 10, set her up, she’s singing, she’s awake, she’s praying, she stands. They’ve got her weight baring on her feet, she’s sitting up. And her fight is coming clearer day-by-day because of the brainstorm.
But this is something that’s not uncommon when you have a brainstorm like that. But she’s doing well. She knows who everybody is and she’s coherent. She does some repetition, but at this point, she’s doing much better. I mean, she went to OT, made a flower and put the flower in and made a little bouquet of flowers and was proud of herself. And different things like that, so- she laughs, she talks, she sings, and prays and we’re like, “Oh my goodness. Just think if
we didn’t give my sister a chance.” And she has a ways to go, but we have her sitting up in the chair three to four hours a day. We also still have someone coming in to sit with her and make sure that she’s treated properly, they said, “Do not give this family any trouble.”
Patrik: That’s wonderful. Can you put some timelines on it? So September the- when it happened, when was the first time you thought, “Yeah, she’s definitely turning the corner? To give our listeners a realistic expectation in terms of- when was the time you thought, yep, now she’s turning the corner?
Shirley: Well, that’s a good question because my sister had a heart attack on September the 10th. She was in a coma either natural or induced for at least 50 days. For about 50 days, about 55 whole days. That’s almost two months. That was September, this is February. This is February. October, November, December, January, February. If you want to say, that’s 5 months. But I’m going to say to you, take away two of those months when she was asleep. So over the three months, to me, she’s doing tremendously well because even when a person has a stroke or any other brain injury or kind of nerve injury it takes six months, at least, to a year. Now, we’re betting on two years for my sister to come back to herself, and we’re going
to do everything in our power to bring her back. We are not giving up and neither is she.
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Patrik: That’s amazing. And what would you say about- I do remember not only from your situation, but I know it from other clients and I know it from my time in ICU obviously, what’s about all this talk in regards to quality of
life going forward? Well I always say that’s a prediction and that may or may not be accurate. Can you talk about your sister’s quality of life and how it compares to the predictions?
Shirley: Oh my goodness. Her predictions was awful. They were like, “Her prognostication is not good and she may not know who you are. Is that the kind of life she wants to have? And she may never be able to talk, she may never be able to walk.” And they had her up on this machine where they have you stand up and put weight baring on your limbs because, when you think about it, you’ve been laying in the bed for how many months? Naturally,
you’re going to be sore, those things are going to take place but it’s a process. You know what I mean?
Patrik: Yes.
Shirley: And she can sit up on the side of the bed; she sits up on the side of the bed. Okay? So timeline, I think this timeline is great for where she has come from. I mean here it is- here you’re talking about, it’s February. This is February. You can talk, you can have a conversation with her. So you tell me, you tell me.
Patrik: That’s unbelievable. And issues like- when patients are in a coma for a long time there is a lot of muscle wastage going on and it can take months to recover some of those muscles. Which is why it takes so long for patients to recover, to walk, to talk. But given that, they were predicting this irreversible brain damage and now she’s talking, she can recognise you. I mean, that’s defying all the odds; it’s defying all the predictions.
Shirley: It’s true.
Patrik: Unbelievable, and that’s why I keep saying over and over again, yes, when patients are in ICU, yes they are critical. Yes they are fighting for their lives, but why would we give up? Why would you give up? I mean, why? Because it can only get better.
Shirley: I agree. Do not give up.
Patrik: It can only get better. It cannot get worse, or not much worse.
Shirley: Exactly. Exactly, because when you think about when you get a cut- if you get cut you bleed, your body starts healing immediately after the cut. The blood starts clotting. I’m not a doctor but it’s just common sense. The body- if we look at our bodies, and we see people in so many situations, the body was made to heal itself and it does, but you just have to give it time. It needs time. You cannot give up. That’s what we’ve said. And
even to this point, we’re not giving up. We see she’s come this far and now we want her to come further. And she says, “Yes, I’m coming back.” No, don’t give up. Do not give up on your loved ones. You sit there and you look and you’re looking sad and, “Oh, I can’t stand to see my loved one like this. Oh, they won’t want to live like this.” They’re not going to be like that forever. Highly likely that they will not as long as you keep that positive energy going and as long as you do everything in
your power to help them to get where they need to be.
Patrik: Yes, absolutely.
Shirley: But they can’t do that on their own. You have to speak for them; you have to work for them. You cannot sit back and feel sorry for yourself, you’ve got to do something about it.
Patrik: Yes, absolutely, absolutely.
Shirley: So that’s how I feel.
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Patrik: Yes and you and your family certainly have done that. You’ve moved it all in the right direction. But without your input, your sister may well not be- or she may be in a well- in a less-fortunate position. Maybe she would have been moved quicker to a nursing home and they would have given up much, much quicker. It really goes to show, yes you’ve got to fight for it unfortunately. It’s not coming your way often without a fight. And
people need to get informed. They need to be aware of their rights, and they need to be aware of, that with time, things can improve. Time is the biggest healer. And you mentioned something earlier, as well, she was in a specialist rehab facility for neurology patients, is that right? Am I remembering that correctly?
Shirley: Well, let me see. Repeat that again? She was in a facility with what?
Patrik: Yeah, where they specialised on brain damage. Is that correct?
Shirley: Yeah, that hospital has a special unit for brain damage, yes. That’s where- yes, yes, yes. For brain damage and for- they’re known for that. She was in ICU and they had the top urologists, excuse me, neurologists there. Yeah, so it’s not so much that she was in an area where they were specialising in brain damage, but with patients on vents. But the thing is that they have a team where they all come in. This team comes in, that team comes in, and they’re
all working for the same thing. You’ve got the brain function specialist coming in, you’ve got all the different doctors coming in to do their part. But it’s not a special area, but they all come and do it. They have a lot of patients there where they are. So they do, they’re good at that. Yeah, they’re very good at that. But they were not good at trying to get us out of ICU, I guess most patients would like that but, I feel like we prevailed.
Patrik: Absolutely. How long did it take for your sister to come off the ventilator, do you remember?
Shirley: Oh, let me see, let me see, let me see.
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Patrik: Roughly.
Shirley: So, she got September, she got out of ICU- October, let me see. I’m thinking it was- let me see. I think they brought her down to CPAP in November. She was recannulated. You said to come off the trach or come off the vent?
Patrik: Both, both would be enough.
Shirley: Okay, she- what was it, she decannulated, I think, in December or January. So, that means November. Now November she was asleep for almost two months. So- October, November, December, I would say either December or January. January, definitely not September. January. I would say January she was decannulated. The beginning of January, the new year, the New Year. Yeah I think she was decannulated and she’s got the scars to prove it and
the trach is taken out, she’s breathing well. Oh, she’s eating her- she can eat pureed applesauce, she still has a feed tube but she can eat pureed
applesauce and other something-sauce. She’s swallowing. She’s saying what she wants to eat; she wants to eat some crab. Stuff like that, and yeah and the next step, we’re working with her to try to get her with some more food to work on with her feed therapist to have her eat more pureed foods so she can have pleasant eating, you know what I mean?
Patrik: That’s amazing, that’s amazing.
Shirley: So everything is a process.
Patrik: Absolutely. Absolutely. That’s the main thing; it’s a process, not an event. It takes time, unfortunately, but that’s exactly what you did. You literally advocated for more time for your sister and she will be forever thankful for you, for you doing that.
Shirley: Yeah, and even now, when you’re in an LTAC it takes time to get them and they don’t see the urgency as if you were in ICU, as well, but we have someone
that’s there with her. We have someone sitting with her three times a week and the rest of the family coming there and advocating for her. And so, there’s not too much that’s going to get past her. She has not broken down, she has no bed sores. I’m not allowing it. Okay?
Patrik: Right.
Shirley: We are not allowing it, no. So we’re on top of that.
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Patrik: That’s great, and it sounds like it is a good LTAC there because most of my other clients that I’m working with, I hear very negative things from LTAC. But it sounds like this LTAC there, in particular, gets good outcomes so that’s great.
You may remember from last year-
Shirley: It’s rare, it’s rare. Yeah, it’s rare, it’s rare. It’s rare, it’s rare, because my mom was in one and she got a stage four decubitus ulcer so- and she had a stroke and she couldn’t talk. So it is rare; we know both sides. And we were not going to let that happen to my sister.
Patrik: Yeah, no, that’s wonderful. That’s really wonderful. Shirley, I really want to thank you for sharing this with our listeners because I think it’s so valuable. If somebody listens to this and is in a similar situation; the take-home message, really, is to not give up. Question everything, do your research, and be aware of your rights and know that you have rights. It’s simple, but it’s also- people get overwhelmed, I’m sure you felt
very overwhelmed in September, it’s very scary. It’s a matter of making sense out of the situation that you’re presented with because it literally is a life or death situation and you’ve got to know what you need to do.
Shirley: Yeah and we didn’t know until we talked to you Patrik, we did not know which way to turn. We felt like our hands were tied, and they were, they put us in a knot. They had us wondering, going home and feeling like we had to cry and let my sister die and it was like, come on. The first thing they- before long, they don’t take long before they encourage you to let them go. They take no time at all for this to take place. And I’m like,
“Oh my God, are you serious? Yeah, we’re not ready to let her go, she’s too young.”
Patrik: Absolutely, because unfortunately, that’s often the easy way out. Painting the negative picture and trying not to give people options, that’s often the easy way out. We talked about managing beds, we talked about managing finances, and unfortunately, people’s lives are not the priority and see what happens- and now we can confirm that these people’s lives are priorities, you might as well get a good outcome.
Shirley: Everybody I told cannot believe that this is what’s happened with my sister. Nobody. People at my job, nobody can believe. They say, “This can’t be. This is not possible. She’s awake and she’s alive and she understands? She knows what you’re talking about?” Yeah, yeah, yeah, yeah. She’s not perfect at this point but we’re taking what we got right now. We can laugh and talk with her.
Patrik: She’s come a long way.
Shirley: Yes she has, and to me, it’s a short period of time, Patrik, really it’s a short period of time. People don’t realise it, but this is a short period of time. September, asleep for two months, take out November. Take September, October, November, and she wakes up in November. Okay?
Patrik: Yes.
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Shirley: We put her in this special programme to wake people up out of a coma. They do a lot of rigorous stuff, they wouldn’t even let us in there. They put in something because they are going to be rough with them or whatever they’re going to do.
They were clapping around and, “Wake up. Wake up.” And then their eyes start blinking and they start waking up and it’s like, “Oh, okay, yeah.” It’s a process but still, this is young. We felt this was still young.
Patrik: I agree. I agree.
Shirley: Yeah, this is young. So people, don’t give up too soon.
Patrik: It’s still kind of early days but you can see the progress, and I also want to- I like that, what you mentioned that in this LTAC they’re talking to her and
saying, “Hey, wake up.” And, “What day is today?” And today is Sunday, tomorrow is Monday; that’s very different approach compared to when you’re standing around the bed in ICU and you’re telling the family and the patient, “You’re dying.” That’s a very different approach.
Shirley: Yes it is, yes it is.
Patrik: So I do feel like the conversations in the early stages need to change from, “Your loved one is dying” or sometimes even
addressing a patient directly, “You’re dying,” to- well, maybe we need to take a different approach. You believe, if we do and if we try. A very different conversation, like day and night.
Shirley: They don’t want to do that because that means more money, more time, all back to them that the hospital has to put out.
Patrik: Correct, with uncertainty. Clearly, with uncertainty, I admit that. There’s a lot of uncertainty, right? But look at what that-
Shirley: Exactly, that’s the key right there. That’s their worst nightmare. That’s their worst nightmare, Patrik. And I told them when I learned this from you. I learned this from you. I said, “Look,” I said, “I know your worst nightmare is that my sister would stay in ICU forever and you, your facilities, have to have,” you taught me this, “your facilities have to have the ability to be able to sustain a person’s life indefinitely in ICU.
Which would be your worst nightmare, would mess up your number. So the best thing you want to do is get them out of there.” And we’re not allowing- we cannot have you kick my sister out of the ICU too soon. We felt this was too soon; it had been no time.
Patrik: Yeah, and here is another thing that I believe in your situation was very important. You listened to your intuition, and I believe it’s rare in this day-in-age that people listen to their intuition. You listened to your intuition and your intuition was clearly telling you something’s not right here; it’s too early. And I think it’s critically important for any other family listening to this- you’ve got to listen to your intuition and
to your gut feeling because that will speak your truth.
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Shirley: Yeah, and just because you’re a doctor doesn’t mean that what you’re saying is law.
Patrik: No, definitely not.
Shirley: Doesn’t mean that this is the way it’s going to turn out because you believe that this- well, just like you believe this could happen, it could also go the other way. Why aren’t you exploring that possibility? Why aren’t you pursuing that possibility rather than the possibility of just letting them go? You tell me what you would do with your mother; I don’t believe it. If this was my loved one, blah-blah-blah, blah-blah-blah,
blah-blah-blah… I don’t believe it.
Patrik: No, no.
Shirley: Not knowing what you know. You know more than I know, you’re a doctor. You know more than what I know. You know that if this was your mother you would have them give you special treatment. Look at TV. Look at TV, and some of it’s true. Where they
take care of their loved ones coming over “She’s one of us. They work at the hospital, let’s take care of them. Let’s get them everything we possibly can.” But somebody that’s not that close to you, it’s just a job. And I told them, I said, “This is just a job to you. You don’t know my loved one, you don’t know anything about them. What do you care? It’s your job. You’re just following the steps of protocols.” Doctors and nurses have a checklist and they come here, check, check, check. Did we do
this? Did we check this? Did we do this, do this, do that? Come on.
Patrik: Absolutely. They’re desensitised. Unfortunately, they are desensitised often and for them, a patient is just a number in a bed and for you, it’s your sister or it’s a loved one and you have taken a very different approach and it’s paid off in the end. I can’t tell you how many families come to us when it’s too late and then they read some of our case studies and then they think, “Oh, what if we had done this.” And then they’ll often
contact us and they’ll say, “Oh, if we had known a service like that exists,” and it’s very sad. It’s very sad. So being aware of your right’s is so important. So important. It literally can save a life.
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Shirley: Yeah. I’m glad that we contacted you early because I think that we contacted you early because we had a sickening feeling. There was a sickening feeling; it’s a sickening feeling not to know, what can we do, which way can we turn, what can we do? I can’t believe this, there was such a sickening feeling, feeling like, “Oh look, we’ve got to let my sister go because they said, “Oh, well something’s got to be done.” So her daughter, my
niece, started doing research, like I said, and she found you. And you have been a godsend, I kid you not. I mean, many days you’ve stayed up many days and many nights; you met with my family. You know what I mean? You met with my family as a family and met with the doctors at the meetings because you could ask them questions that I couldn’t think to ask. Hell, I wouldn’t- how would I know? I don’t have that kind of a background. But I knew that my gut said, “Something is not right
here.”
Patrik: Yeah. It’s so important to listen to your gut. So important. So important. Yeah, no, that’s- it’s been a great journey for your sister and I can’t thank you enough for sharing this with our listeners because I hope that somebody will listen to this story and think, “Yep, I’m in a similar situation. Let’s try whatever needs to be tried to have my family member survive.”
Shirley: We’re in it for the long-haul. If it’s two years, we’re there. But we believe she will recover. We are hoping and praying for a full recovery. And we’re accepting nothing less. And with that kind of vibe going, and my sister having the same feeling. Technically, we feel like it’s only been three months because she hasn’t been awake for more than three months. So we’re going to push for her, we’re even going to try to hire physical
therapy to come in and work for her and help her even more with everything LTAC cuts-off at. Because there comes a point with LTAC where they- if you don’t respond as quickly as they want, then they say, “Okay, well
they’re not responding as much, we’re going to kick her off the programme.” But you have to think outside the box, Patrik, you can’t just settle for whatever. You have to say, “Okay, can we do something different here?” Okay yeah, you don’t do it, but can we get somebody else to come in and do it.
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Patrik: Very much so-
Shirley: And we come in here, we massaged her hands. Yes, we make sure that blood is flowing.
Patrik: Yes, absolutely. And I’m sure the way I’ve gotten to know you and your family, you would move heaven and earth, you would leave no stone unturned.
Shirley: That is so true, so true. Yes, yes, yes, yes. My mother was a nurse and I come from a family of caregivers and you just can’t be- you can’t just settle. You can’t just settle.
Patrik: No.
Shirley: You’re talking about somebody’s life that you cannot get back if you give up. But that’s everyone’s own personal choice, let me just say that. It’s your own personal choice. It’s your own personal choice, but we chose not to. Anita Baker’s song comes on in the room and my sister starts singing along with it. We’re like, “What?”
Patrik: Yeah, no. It’s so wonderful to hear that. It sounds like she’s more than halfway there and hopefully she can recover. I can’t thank you enough for sharing this with our listeners, and I know that some people will benefit from this interview because they-
Shirley: That is my hope. That is my hope that somebody can benefit from this. Don’t just throw in the towel. You wouldn’t want nobody throwing the towel on you. That’s my take on it; do what you want to do but if it’s me, I’m like, “Don’t throw the towel on me,” even though I have an advance directive. Everybody’s different unlike- I used to say give me 30 days and after seeing my sister, I say, “Give me at least 60 days. Give me at least 60 days on the vent or whatever you’ve got to do or the life support, give me at least 60 days.” Everybody’s different, do what you want to do but
I’m like, “Give me a ten because the day I saw my sister come out of this I was like, you know what? We need time. T-I-M-E. Time.
Patrik: So important. So important. Okay, Shirley thank you so much again for coming on to this call and thank you listener, for listening to this interview. So we’re wrapping this up now, thanks again Shirley for sharing this-
Shirley: Absolutely.
Patrik: Thank you, thank you. So have a look at our intensive care website, have a look at our case studies, you could also get one-on-one consulting and advocacy and, yeah. Have a great day listener, have a great day Shirley, and thank you so much again. Have a good day and thank you.
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Shirley: You too now, Goodbye.
Patrik: Goodbye.
Shirley: Absolutely
Patrik: Goodbye, bye.
