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Caregivers also leave ICU with high rates of PTSD and long-term life impacts. Mike Maranhas shares his side of his wife’s ICU stay and recovery.

Episode Transcription

Kali Dayton

Now we’ve had penetrating insight into the sufferings of ICU survivors themselves. Yet, we would be missing a big part of the picture. If we dismissed the other survivors of these stories, the loved ones, these are the spouses, children, friends that received the life altering phone call that their loved one was in the ICU.

These are they that had student weeks at the bedside struggling through uncertain futures, and often burdened with a life or death decisions. For those that are in medically induced coma. They too, are ICU survivors.

So what about them? What wounds are inflicted in scars left on their lives? What is it like to go from spouse or child to full time caregiver after the ICU?

Studies show impressive rates of PTSD and caregivers, up to 61%. In some ICU survival cases, Mike morass, author of two weeks in winter, is with us now to share the journey he and his wife took before, during and after the ICU. Can you tell us about what Bella’s life was like before her ICU stay?

 

Mike Maranhas

Bella was very robust person. She’s deaf type A personality. highly ambitious. She she graduated number three from her private high school. She went on to Tufts on an academic scholarship. She majored in economics. And then she embarked on a career in banking in the Boston mutual funds industry. When I met her she was 32 and had been a vice president for a while. She She just was dynamic and every which way physically mentally center. We we met in 88 and got married in 93.

And Bella, developed ARDS after breaking her ankle in February of 2008. And it was as a result of convalescing in the hospital, right after the operation, that she developed a cough. pain in her chest, which the doc has it first thought was an embolism. But subsequently, upon hearing crackling in her back determined that she had pneumonia and within 48 hours of having that initia cough, we found her on life’s- I call it “Life Support” more oxygen, then the convalescent Ward could deliver and she had to be moved to the ICU.

And was several days after that, that she was put she was intubated and put on a ventilator.

 

Kali Dayton

How long was she in a coma for she was in a coma for?

 

Mike Maranhas

About 25 days. Completely under and but she was highly sedated. To the point of both. This is prior to the calm and calm for about 50 days. So there was about it was 25 days in which she was so called “medically induced”, but beyond that she was on heavy fentanyl, propofol and other drugs. It was roughly about 50 days. I guess

 

Kali Dayton

We can start with what was it like to not be able to communicate with her during that time?

 

Mike Maranhas

To answer your question before she was even placed in the coma. It was tremendous fear because she knew something was desperately wrong. And she was losing the ability to communicate. I still have pieces of paper on which she was trying to write to me for thoughts or fears stuff that she wanted done. I mean, standing side by side and she could not she couldn’t get the words down.

So that that barrier in communication, even before she entered the coma was prohibited. It stopped us from being able to share ideas, and even things would finance to do the house. Things I had to take over nevermind her fears in the ICU, even minor things, but the major things was what what she was facing, she had no idea what was wrong with her. She.

And when she tried to ask questions, she felt she was being ignored. I think I think, in reality, she had lost the the mental acuity to comprehend the nurses responses, because I was understanding them. And I will try to explain to Bella, so there was that I can’t, I can’t overstate how afraid she was the anxiety. And then when she was placed in a coma. And there’s a lot more to this, but I’m gonna answer your question directly.

We lost all communication. And there were a lot of things, numerous things I would have wanted to ask her on a daily basis. Number one about further questions about how she wanted to be treated, because we had we had discussed that ahead of time. Even before she entered the hospital, how would you want to be treated in a life or death situation. But the but what happened was her her condition, and her scenario became so fluid that the the, as much as we had discussed her the hypothetical possibility that she would be put on life support and could die.

We hadn’t addressed every detailed possibility, there’s no way I could have thought of everything. So communication with her while she was under would it would have been wonderful. And also just just to, to to assuage her fear, I had been told, and I had also done some research and realize that patients that are in a medically induced coma, do not lose their senses. She she, I assume she was highly perceptive to the audio, and anything tactile that was occurring around her. So I was very careful about what I said, because I didn’t want to raise her anxiety. And I was also very careful about what other people said in the room. We had limited visitors, but I made sure they say anything that would that would that would prompt her to react, obviously in a way that I couldn’t see because she she was on a parallel occasion. It would just be cerebral. I think this as much as I can say right now.

 

Kali Dayton

And Isabella found like she’s very independent, and definitely had her opinions and her wishes. So what did that burden do to you to have to make all those decisions for her?

 

Mike Maranhas

Like I mentioned, Bella, broke her ankle on a casual walk near our house, a piece of granite broke underneath her size four feet, and that’s what caused her to suffer a compound fracture in your in her ankle, required surgery. So I had her placement Boston hospital. She had her surgery this, this is what mentor ARDS, this happened in February of 2008.

However, in July 2001, she suffered a subarachnoid hemorrhage, a ruptured brain aneurysm. And so that this was really that was the first major medical crisis in her life. Orange was the second and when we went through her her brain aneurysm she had she had two brain surgeries. So as a result of that, that brain aneurysm in 2001 Bella already and I mentioned before how she was a very cerebral person, a very, she’s an intellectual, very robust cognition. Her intellectual capacity, really was her primary thing in life working using her brain reading, writing. And as a result, her greatest fear was losing cognitive ability.

So, skip forward, we went We went through this this issue with the brain and resume, but she survived, whether she suffered any cognitive deficit with that. I don’t know if it was it was immaterial. But when we came to the situation with ARDS, prior to her being placed in a coma, she was pertrified, because of having gone through what we did in 2001. She was petrified of the oxygen deprivation, she might incur with the hypoxia.

Before she was placed in a coma, she had a bout of tachycardia where her SATs dropped below, you know, the the 92% required level, and then plus just the the escalating need for more and more oxygen. So she, she was adamant that she did not want to go on life support. And despite all the discussions we had had, I had, I had to talk her into going on life support. I tried to explain to her that this was not life extension.

This was not something where she was going to be on. She was an elderly person who we were just trying to extend her life where where there really was no, no reason other than the extension per se, that this was simply a temporary measure so that her body could heal, and that she could then return to her normal state. And that distinction between life extension.

And life support was something that I had thought of, while she was while we were going through this, this discussion and trying to emphasize that delineation and that I would make sure that I would never not let her cross over into the second stage, which is what she feared life extension. And so as a result, in talking with the pulmonologist, we we reached a conclusion that someone with ARDS if if they don’t, if they don’t recuperate if they don’t turn the corner with their ABGs SATs, their ability to breathe on their own, by the two week period, that the chances are they’re not going to make it. And so we were able to use that as as a deadline.

At first Bella only wanted one week, and then button just in collaboration with her pulmonologist. I was able to get her to agree to two weeks and I promised her that at two weeks from the day they put her under no matter what I would take her off life support off the ventilator off of oxygen and and let things go.

And that she agreed to that with reluctance with great reluctance. But she agreed to it and she put all the trust in me. So that put me in a situation where I made a commitment to my wife. Very serious commitment that I would I would I would let her die if if she didn’t recover within two weeks. And that that decision and her being placed in the coma led to two weeks in hell.

 

Kali Dayton

Wow. I’m just trying to imagine what kind of stress and burden that would be.

 

Mike Maranhas

And after two weeks, she still wasn’t better.

 

Kali Dayton

So how did how did you make that decision?

 

Mike Maranhas

Well, what happened that for anyone that has been through origin understands ARDS knows that it’s a roller coaster ride. You go you get a little bit better, you get worse. You’ve been a little bit better than you get worse. Whatever it is that caused this ARDS, the septic or the the sudden inflammatory response syndrome lead to sepsis lead, lead to ARDS just took a toll on her. Within that two week period. Her entire body failed. Every major organ failed.

I had to call her brother who live on the West Coast, I had to call him home twice, within a one week period. Here to fly home if you wanted to see her before she passed, and that was based on doctor’s recommendations, she was on full 100% Oxygen.

In addition, she required peep to get to the point where I knew what metrics to look at constantly but, but there was nothing I could do. All I could do throughout this period was pray. My spiritual life helped me tremendously because there was nothing else on which I couldn’t rely. You couldn’t rely on medicine because medicine couldn’t even tell me what had caused this. No one could none of the doctors could really explain even what what caused sepsis what caused the systemic reaction.

Why? Why her body was reacting when other people’s don’t. I, I was the only thing I could do is research I was clueless. So I, I went into a I became a like an automaton. I just was focused. It was just focused on her. We live an hour away from the hospital, I drove in, spent the day whether it came home late at night, and got some sleep and just went in the next day, and stayed attentive to what was occurring. On a day to day basis. We had a meeting at four o’clock, it was in a large room was filled with all the surgeons and nurses from the the ICU, pulmonary ward that had worked on Bella as well as doctors from from palliative care and the social worker that had attended to me during this, this ICU stay.

And they were the doctors were very candid. They they said this morning, shoot your wife has a 15% one 5% chance of surviving in today’s the day in which she stated that she no longer wished to remain on on life support or life support or the ventilator? What do you want to call it? Um, however, we need to ask you what you want to do.

So I knew what they were telling me was it very high, very likely she’s gonna die. And he will probably tell him, you know, it’s 1% they will try and give him some modicum of compassion. But I realized what they were saying. So I I just, I prayed, I just prayed. And I entered like a dual sphere where I was praying and trying to listen for an answer, while at the same time staying focused on everything that was current around, what what would be the next steps. And they said, Well, at this point we’ve we’ve addressed the possibility that she incurred her ARDS due to aspiration during the operation, and we don’t believe it’s bacteria. And we haven’t found any any identifiable virus in her in her lungs. And for this entire period. They’ve been given her the full spectrum of antibiotics for own perfectly known virus, bacterial and fungal causing fungal causes for arts. So all that was left was addressing what they had identified was a fungal deposit in her sinus cavity and put in in replacing her intubation with a tracheotomy.

And I said, “What do you think? I mean, is there is there a chance?”. I knew very well what I was doing, because if I took her over this period, and if by any chance she survived, and she had a cognitive deficit- I don’t know how I would have dealt with it. I don’t think she would have forgiven me. But there was something while I was praying. That told me to ask these questions and to pursue it, and I can’t explain that – I’ve never been able to explain When I expected to go into that room and say, take her off. And that didn’t happen, I went in there and I asked questions.

And when they, when they told me what they wanted to do with addressing the fungal deposit with an oxygen delivery, they include cluded more humidity, to break down this phone with deposit, something told me to go with it. And I then went around the room and I asked the doctors what they would do in my situation. They said that they would give their wife every chance they had, but they would, they would definitely give it a timeline. And I asked him, “Well, what, at what point?”. This was a Thursday, March 20 2008. And they said that if she didn’t turn the corner over the weekend, if she if she didn’t become remarkably better, by Monday, she never would.

And I decided to go with that I something in my heart. I said to go with that. And I went with it. And I knew the consequences and these consequences would come. This decision will come back to bite me later, when we talk about the the post ARDS, post ICU issues that that Bella faced. But in that situation, I made that decision. I broke the promise to my wife, and I wanted to try that. One more. Give it one more try addressing the third reason that we know empirically causes ARDS, and we work with it. And so I can tell you at this point.

Transcribed by https://otter.ai

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