Edward Berry and Raina Perry

00:06 Raina Perry 30 years old May 1st. 2009 Salt Lake City, Utah wife

00:16 Edward Perry age 37 May 1st. 2009 Salt Lake City, Utah husband

00:27 Edward who has been the biggest influence on your life

00:33 Okay.

00:37 And probably just have to see my family.

00:40 What lessons did they teach you?

00:45 A lot about togetherness

00:48 A lot of lessons were things about

00:55 Where I part ways with the as well, though.

00:58 Okay, what would you say are the most important lessons you've learned in life?

01:06 Taking the other with your loved ones.

01:10 Okay, what is your earliest memory?

01:14 Being bitten by an ant

01:19 How old would you say you were I don't know.

01:23 Tienda know my age probably

01:27 I probably used to repeat it all the time. But yeah, I don't know.

01:32 What's your favorite memory of me?

01:38 Probably

01:41 My most recent favorite memory would be coming to an ospital and understanding that you were really there.

01:50 Might not a solicitation or okay.

01:55 If you could hold onto one memory from your life for eternity, what would that be?

02:04 Premier wedding day

02:08 If this was our very last conversation what words of wisdom would you want to pass on to me?

02:20 I don't know I guess.

02:34 Sensitive cologne

02:46 Do everything you can to stay happy?

02:51 Do you have any regrets?

02:56 Such as

03:01 37 years old and they don't have kids yet.

03:05 I thought that was interesting.

03:08 The whole time that you were unconscious in the hospital they're sedated.

03:14 I kept thinking. I wish I was pregnant and I wish we had some kids and I was regretting that and then as soon as you woke up you were talking about how we needed to have some kids right away, and I thought that was so interesting that

03:28 I mean we've talked about it, but for the first time we both had this same.

03:33 Idea that we needed this other.

03:37 This other part of us that we could cultivator have.

03:42 That was part of you and part of me.

03:46 Home. Is there anything that you've never told me but want to tell me now?

03:57 Not that I can think of we're pretty open. Is there something about me that you've always wanted to know but never asked.

04:12 I guess a little details maybe things like where did you go to school when you were a kid things like that? Nothing really big though. I've got all those questions out of the way.

04:25 I went all over the place through elementary school. Anyway, I started school in California when I was 4 years old.

04:34 I started kindergarten and then we moved back to Utah and I went to first grade.

04:41 And second grade at the same Elementary, but then I moved to a new Elementary for 3rd and 4th grade.

04:49 And then I went to a different Elementary for 5th grade and an even different ones still for 6th grade.

04:56 That's quite a bit more than mine elementary schools in junior high and high school just one when you're high when high school, which was nice.

05:07 How did we meet at you through mutual friends?

05:13 What was your first impression of me?

05:21 How's the how well you didn't really make good eye contact and you kinda didn't care and you're being introduced to me. It didn't seem like you care to meet me. I love you. Okay, though. I was dizzy going around meeting lots of people anyway, so I'm still self-conscious, but I used to be really self-conscious.

05:41 So that's probably where the lack of eye contact and things come into play.

05:46 What do you think makes for a successful relationship?

05:51 I'd say growing together.

05:54 You know if you're not willing to go.

05:58 Go the Distance with somebody

06:02 And I like I don't know your life change is a little bit and if they're not willing to change with you, that's when you things usually

06:11 Go south with the relationship I'd say I don't know there's still a lot of give until you got to hang with people if it's worth it to you. I'd say it's a lot of work, but it's worth it. What are your dreams for us?

06:26 I don't get a house to Turon not renting.

06:32 Place where I can paint the walls anything I want to on them.

06:36 And have lots of kids how many 787-8 or we'll throw in some twins or triplets.

06:49 What do you love most about me?

06:55 I got to see your strength.

06:59 I'd say the same thing about you.

07:02 What was the happiest moment for you in our relationship?

07:09 It's not the happiest. One of the best was when I realized that you weren't going off to New York and you wanted to stay.

07:19 Here in Salt Lake and be in a relationship with me.

07:24 Is that was pretty happy.

07:28 What's been the most difficult time for us?

07:31 My health issues

07:34 I had my valve transplant my recent mystery illness.

07:40 Has it been pretty taxing? I'd say can you tell me what you remember about the hours leading up to the ER?

07:49 I remember I really remember only after we talked about it afterward because because I started having weird nightmare fantasies as soon as I went unconscious, I'd forgotten that. I've been sick the day that weed went into the ER so

08:11 And yeah.

08:13 Dawn April 9th 2009

08:17 We thought you had a flu or a stomach flu some kind of bug everyone at work was getting sick. And and you had you had maintained kind of the same held for about a month when everyone around us was getting else that we thought you'd finally caught the bug and then that overnight in tonight to the 10th is when your your health really plummeted. Do you remember much about that? I remember when I started

08:45 I remember when I started having problems breathing.

08:49 And I guess that's when my my heart and lungs were shutting down.

08:54 And we needed to get to the ER.

08:56 I remember.

08:58 Only afterwards

09:03 Have forced breathing machine.

09:06 That was the LDS Hospital in there emergency room and there's a little things that I've remembered since then like to Split Second moments of being in the Life Flight helicopter. Okay, you were quite sedated when you were life-flighted. So I'm surprised. I mean you defy most sedation and you remember a lot more than they tell me you're going to so, I guess I'm not that surprised but the mixed in with the guy was having while I was going under

09:45 Did I do indeed since afterward? So do you remember in the emergency room the doctor when the breathing the forced breathing machine wasn't helping. Do you remember when he said we will likely have to intubate you and is that something that you would want us to do that and we both were very gave a resounding yes, cuz that's the kind of question that has to do with it and like a DNR. I do not resuscitate because it's a life support measure, but you were you were adamant that the S you would like those kind of measures taken, but you don't remember that is a I was trying to breathe with machine and they told me to let it breathe for me.

10:40 And then that's where I disorder let go.

10:44 And I could tell your face changed you had the mask over your face and I could tell that your eyes would get really wide when it would force the air into your lungs and your body would kind of

10:56 You were kind of tense up and raise up your chest a little and that's when the doctor saw that and said you just need to let it do that for you. And then you did kind of just slipped back into the bed and relax.

11:12 What does it feel like to let go of your breathing?

11:16 Take a leap of faith. Just basically like saying okay. I'm going to give up doing this on my own and

11:27 Just hope for the best hope that you know that I'll when I Let Go.

11:36 And knowing that you know feeling like I was going to pass out just hoping that I would revive but at the time I wasn't really concerned about the Alternatives I wasn't really afraid.

11:49 I just went with it.

11:52 One at that point I wasn't I didn't fear for your life yet. I mean, they told me that you were really really sick and that they couldn't help you. All of the tools were at the new IMC facility.

12:04 So they were going to get the chopper there and get you life flighted to IMC just as soon as they could but I thought well, they'll get him there and then

12:16 Have the tools and the team and fix them.

12:26 When you were still on the 4th breathing machine where you what did it feel like to have to force the air in?

12:34 Is it to try and assist the machine when I was trying to breathe with the machine wasn't working out so well it was.

12:47 It took a lot out of me. And when I started just letting it read for me. It felt a lot better. Okay, it made me feel more lightheaded of course and everything that there was not as much there's not as much Panic OK as much work I guess.

13:09 Do you remember being intubated?

13:16 When you arrived at IMC

13:23 There was a meeting on the first days were really

13:27 Confusing and they warned me up front that it was going to be a roller coaster things were going to be two steps forward one step back everything. They told me they would contradict it in the next breath and there was a team of six or seven doctors with different Specialties all conferring with one another to determine what the next course of action should be because they didn't know what was wrong with you initially. They talked about opening your chest up and and replacing the valves that you had.

13:57 The pig tissue valve you had put in in September 29th 2008, but then they said you wouldn't survive surgery.

14:06 But after they put you on the the cardiopulmonary bypass machine.

14:13 You would come around sometimes and you were biting on the tube that was breathing for you.

14:19 And I recall when you were more Lucid, this is after 13 or 12 days. You told me you were trying to force the tube out of your throat.

14:29 Do you remember how that tube fell or what what you were thinking the number of the tube so that it's time I was on my mind was in the hospital was having my own separate reality going on had to really nothing to do with the hospital at the time a gun through a series of

14:51 Sort of strange

14:55 Dreams about being abducted and my people not aliens and then my organs were going to be harvested various kept running into various bad scenarios good fighting my way out and losing over and over.

15:12 When I finally

15:15 When Maya

15:18 When my delusions did meet up with the hospital and I did realize I was in the hospital at that is in a bad Hospital anything like a breathing tube in me or anything like that is trying to escape. Okay? Yeah, I still even at the point where I was conscious, I believe that there was a I've been brought in through the basement of the hospital in a dad's were The Chop Shop going on down there so mixify being unconscious in those the drugs that put you on and also probably

15:57 A lot of panic but a different things went into that.

16:04 They're coming to even having the tube down. My throat was bothersome. I've had it before.

16:11 The more conscious I became of my surroundings the more I put up with it until finally they were I was able to have it removed.

16:21 At one point I expressed to the nurse that I was worried. You were going to bite through the tube because you were biting really hard and they said that's never happened. But then you did bite your tongue. And that's a that's a problem when you're on as many anticoagulants as you were on because the CPS machine.

16:42 It takes a bit. It's like a

16:46 It's like a dialysis and takes there's two tubes up into your femoral artery one tube takes the blood out of your body and then oxygenates it and then the other tube puts it back.

16:58 So with all of that movement with all of that messing with your blood and doing the work for your heart and your lungs they had to give you these anticoagulants. So when you bit your tongue, it bled a lot and then it would start to clot but they had to keep your mouth clean and suctioned what you really didn't I'm sure you don't remember but you didn't know when you would get agitated.

17:26 So on April 10th

17:29 About 4:30. We went to LDS Hospital in the Avenues downtown Salt Lake.

17:39 345 and said I can't breathe. I feel like there's fluid in my lungs. I can hear fluid in my lungs and that was alarming to me because that sounds like pneumonia or an infection.

17:54 So that's when I we I got up and got got you dressed and grabbed a few of our things and went up to the emergency room and after about 2 and 1/2 hours in their emergency room, they could tell that

18:09 Their staff and their their tools, they're means we're not going to be sufficient for how sick you were but they couldn't tell me why you had no blood pressure.

18:19 And your lungs were failing you couldn't breathe.

18:23 So they life-flighted you to IMC in Murray, Utah. I was told several days later that it was a record flight. They got you there in 17 minutes.

18:38 So that day they talked about a couple of different options. They said we're going to see about putting him on an lvad which is a machine that they put people on before they can have a heart transplant. They talked about doing the iabp, which is an intra Arrow bypass. It's it's a balloon pump in your heart.

19:00 And then they talked about the CPS which is what they ended up putting you on. But when we first got there, I still I was under the impression that once we got to IMC, they would have the tools and they would know what to do and they would start fixing you.

19:15 So I got there and the Life Flight nurse one in particular name Shelly. She saw me in the doorway of your room. She called me and said I want to make sure you know where to find your husband. Where in the

19:27 Cardio cardiac ICU 5th floor room 16 and I said, okay I'm in the parking lot and she was really surprised because they hadn't been that long that you guys have gotten there. So she told me in the doorway and said Can Raina come in and sit by me while I do my paperwork and there was so many doctors and nurses all around you so I came in and I got to see you and see that you were there but

19:52 I still didn't realize that they were taking all of these measures and you weren't responding to anything. So I sat in there for a moment and then they rushed me out and I said it's really important that I stay with him as much as possible because he does a lot better when I'm here and I knew that from when you had your heart valve replaced about 8 months ago, but they are sure hear that all the time. I just said I know that it sounds nutty but he'll be better if I'm in here and so they ushered me out and then they came out and several doctors came out and spoke to me about what they were going to do these differently. No the lvad or the iabp. There was two others. I just I couldn't even at this point. I was in shock because I just didn't everything was going so fast.

20:34 So then they came out and said we're going to have a little meeting where we discuss. What would be the next plan of action that will help your husband the most and I said, okay. Well, can I go be with him while you discuss this and they said sure they came out and got me a nurse Bethany came out and got me. She's about my age and she was carrying me back down the corridor in the ICU and she stopped me and her I started welling up with tears and she said in my opinion. I think it's important that I tell you that in my opinion. He's not going to make it today.

21:10 We're taking every every course that we know how to take we're giving him every medication that we know how to give him and he's completely non-responsive.

21:20 And I said what I just I thought everything went kind of fuzzy and I support you talking about and so then we started running down the hallway to your room and there was so many people in there and I came around to the only in I could get which was at your head and I took your and your your your head was.

21:39 At my with at my Center so your feet were out in front. Your whole body was laid out but starting headfirst at my at my hands. And so I took your face in my hands and I said,

21:51 Lots of things I started begging you not to leave me. I said, please I'm not ready. You have to stay here. I don't even remember just all kinds of things thing. You have to stay with me. I'm not ready for you to go and then I started looking around and everyone's just kind of staring at me cuz I'm yelling and pleading with you. So I started yelling at them and pleading with them and saying this isn't happening. What what's going on? What are you doing? Like, they're all just standing there. I didn't know that the doctor the intensivist doctor Thompson was on the phone with the specialist of the mechanical specialist, dr. Revenaugh, so

22:29 I heard then I noticed he's on his cell phone and I hear him say I'm not very optimistic and I said don't tell him that and he said, oh he can't hear me and I said and my mom was in there by then and she said you'd be surprised cuz right before then they said who else should be in here to say goodbye, and I said his parents and I couldn't even think of it. I said my mom I mean for me mostly and so they went and got them.

22:57 And then I just plead with everyone in the room and I was begging you and your mom came in and she said

23:05 Two words over and over again my baby my baby my baby my baby. That's all she could say was my baby my baby and I let her into to hold your face.

23:16 And then I came back and I was holding your face and I was begging with you. Please don't leave me and then one of your eyeballs moved like a fraction it move just the tiniest little bit and I told Bethany the nurse that had just told me that you weren't going to make it. I said his I just moved his I moved it just move just now and she just kind of gave me like a motherly pat on the shoulder not patronising but kind of sure sure deer that happens or whatever.

23:43 And your face didn't look anything like you that's what really frightens me is it looked nothing like you and your eyes were bulging out of your skull and they were really red.

23:55 And then they started to prep you to take you and put in this machine that they were calling the other doctor who I found out later was in Sugar House Park with his family not even on call. He just is a such such a specialist they called him. So then I chased the crew down the hallway and I said you have to bring my husband back. You have to bring him back. You have to bring my husband back. You have to bring him back and I just kept yelling at them and then I thought they were getting into the elevator and the the respiratory therapist the one with the balloon in her hand giving you oxygen looked at me and I recognized her from your surgery last time 8 months ago and I pointed at her and I said you have to bring him back you and she said we will and then the elevator doors closed and then I had to go back out to the waiting room by now. There's about fifty people because I had sent a small text message when I got there.

24:47 Saying you were having cardiac arrest and at the time they were saying things like pulmonary edema and things I didn't understand at the time which I've now learned what they mean, but none of them were actually accurate.

25:01 So what they're saying?

25:03 At that time was it your valve probably needed to be replaced.

25:10 So they put you on the CPS machine, which does the work for your heart and your lungs and then they brought you.

25:16 Back to the ICU. But instead it wasn't the cardiac diet or the

25:21 It was the ticu the thoracic ICU that they took you but to which is where you went 8 months ago for your first surgery and then I brought every single person through to see you because I thought they were telling me that time that your life was minute-to-minute and I thought that if it were I thought it was only fair that every single member of your family that was there and all of our friends that were so worried and so I brought that groups of 10 and 12 people and it was fairly fast. I didn't it wasn't like a some kind of morbid show. It was just to bring people through so they could say goodbye and send you their positive energy. I still couldn't believe it. I was in complete denial eyes. I thought there's no way this can be happening.

26:06 But then they kept saying things to me they kept saying terms like he could not be sticker. He is the sickest man in this hospital and then they upgraded it to he's the sickest man in the Intermountain West he could not be any sicker and then the nurses were saying terms like he's on Rocket Fuel and I said, what does that mean? And they said he's on 100% of every medicine we can give him we cannot give him any more medicine is it it's impossible to do anything else for him?

26:41 So then it was up to you and that's when I would start talking to you and and telling you that you were strong and I knew you couldn't leave and I knew you would stay with me and and I loved you and

26:53 And just everything I don't even remember just everything I could think to tell you that would remind you that you that we were Tethered to me and that we had to stay together.

27:03 And then after

27:05 7 Days on the CPS machine they started I mean they told me in the beginning. This is a very short term.

27:12 This is a very short-term solution. We have to go to plan B after that and so I was confused and I said well if you take him off this machine that's doing everything for him then what and they said? Well, we'll put them on this balloon does iabp which is like a balloon in your aorta and all that does is help a little tiny bit helps get the blood up to your brain and down to your toes just to look cuz it just contractz and expands.

27:40 It's very minimal. You were on this full life support and they were going to take that and put you on this little tiny battery powered motor.

27:52 And so I was really scared about that. That was 7 days after they put you on the CPS. It was a week to the day that we got there that they did the other surgery.

28:02 And the anesthesiologist told me on Thursday the day before surgery that he was would be very surprised. If you didn't make it through the actual surgery cuz they had tested your heart the CPS that you were on they could turn it down and make your heart do some of the work so they would turn it down for like an a minute every hour 2 minutes every hour 3 minutes every hour and then they would do an echo so that Thursday what made them decide to do the surgery on Friday as they did an echo and EKG while the machine was off for about 3 minutes. So they saw that your heart could work on its own for three minutes. So the cardiologist anesthesiologist said he's going to make it through the surgery, but it's like you can Sprint, you know downtown, but can you run to Provo?

28:50 And I drove always far from here 30 miles. So that's what your heart had to do.

28:58 And so that's why it was so scary Friday again. You were minute to minute and then it went upgraded to our to our

29:07 So that first 12 to 24 hours was really touching go again on Friday a week to the day that we got there.

29:14 And then

29:16 Saturday

29:19 He started coming around cuz I kept You released to dated after the surgery Saturday. You started coming around a little and I I realized that you were hallucinating because you were looking at me and you had this look in your eyes that there was something very wrong. You were terrified worried and you were looking above me in the corner of the room over my head. And I said, is there something up there and I pointed with my finger. Is there something up there and you nodded? Yes, and I turned and looked and I honestly looked and I didn't see anything and I turned back and I said I don't see anything and I said to your nurse Katherine who was over you too. I said last time he was on these kind of Narcotics. He hallucinated and you shook your head. No, like I'm not hallucinating and then I knew you were so I looked again and I said, I believe that you're seeing something and I need you to trust me that it's not real and that it's going to go away and then you were just

30:17 Very annoyed you didn't want to hear that at all. And and that's about the time when you started trying to get up and out of the bed constantly and then your doctor came in doctor held at Christmas and she said

30:31 I'm worried about his kidneys and I said can we not talk about this in front of him? And she said oh, he's completely out and I said he just told me he's hallucinating and she didn't believe me cuz you were on so much Versed and Fentanyl these two narcotics you were on so much that she's never seen anyone with it. And then she saw you try to sit up and get out of the bed later that night. So she finally believed me but it was very frustrating.

30:58 To have someone I mean, I know that they probably have family members all the time that tried to tell them things but having been through the same kind of experience with you on narcotics and a recovery in an ICU with a breathing tube. I knew the kind of things that that to look for when she finally started listening to me.

31:19 So after that, everything went uphill you were gradually going uphill you were on the balloon pump and your heart was doing its homework and they were really pleased with the progress you progress you made and then you started coming around more and more and they were able to really wean you off of all the narcotics.

31:38 And then you were there and you wanted the tube out desperately and I said he really hated that tube last time and

31:50 We had nurse Katherine and she said I'm going to get that she we were going to have her the next day and she said I'm going to get that tube out tomorrow morning. I promise and I said, okay and I kept telling you Katherine says we'll get it out tomorrow. You remember that point and I know what you're talkin about. Okay, I was conscious and

32:07 Yeah, and I'm trying to get the thing out on my own. Yeah, I know and that was she kept saying you can't do that Edward. So then the next morning the Doctor Who Doctor Thompson who had to give them the okay for them to remove to excavate he was in a meeting and you were so frustrated. You were so ready to have that tube out and it was joking you and gagging you and making you cough and she finally said I'm not going to watch this for another minute. I'm going to go page. Dr. Thompson and tell him we need to get that out and she did and he said okay, he didn't even come look at you. He took her word for it and said, okay get it out. So the respiratory therapist came in and I stood at the foot of the bed and there's some new procedures. They don't let people stay in the room for but I must have a great poker face cuz they let me stay in the room for everything this time and 8 months ago.

32:56 And they pulled that tube out and you coughed and then you said I want to brush my teeth.

33:02 And then you wanted a Sprite and you couldn't have one for two more days. So that was very

33:09 Staying out of your lungs. It's really strange all kinds of fluid and stuff comes out with it.

33:17 Well, so after this whole experience they say that you had viral cardiomyopathy.

33:25 You caught a virus basically and they don't know what kind they can't say.

33:31 I can't say why the way that dr. Thompson always put it is it sometimes lightning strikes on a clear blue day. You basically got struck by lightning had nothing to do with your heart valve.

33:43 And that's got to be one of the most frustrating answers for you because what does one do with that?

33:52 I guess.

33:55 I guess I just try to imagine.

33:58 There was some little special virus made just for me. They said it might be something they've never seen before and I said well if it is invented by Edward then we get to name it and it's going to be one of those naughty names that nobody can ever pronounce in public.

34:16 So what I want to know Edward is how has your perspective on life changed since going through an unexpected 18 day Hospital stay?

34:24 Elderly died in stone honeymoon phase of being out of the hospital, but I can say for sure that really makes me want to keep my things in order.

34:35 Because just thinking that I could have died and left the basement a mess little things like that like having unpaid bills and it's sticking them with you. It's not something I really want. Well.

34:50 And other things too, it's like

34:54 I know just a little things.

34:57 Places that you are maybe you should have gone to vacation to and gone away.

35:06 And I'm also cautious to also say I have a fear of have said mystery virus coming back even though they explained it wouldn't well now you would have built-in immunity to it.

35:19 I mean, I I can understand completely that I would be very

35:24 I would be very worried as well. And I'm glad I'm not contagious at 8 to live in a bubble. I would still hug you through the bubble.

35:39 What about this experience makes you want to have children?

35:43 I've always wanted to have kids I just

35:47 And got around to it. It doesn't seem like something I've ever been in a hurry to do we talked about adopting it.

35:55 Boy from Transylvania, you know just different things like that, but

36:02 When you wake up and you know that you almost died. It's kind of hard to think that that that could happen again and it can happen to anybody.

36:12 When we we were we dated since 1997.

36:18 We got engaged on 7707.

36:22 And then we didn't get married until September 6th of 08.

36:28 So we like to go kind of the backwards route it seemed

36:33 As far as how I feel about having children since this experience is it I just can't imagine not having a little extension of you at you're so creative and and artistic and I just I think that you are one of the most enigmatic people I've ever met and I just can't imagine not having that.

36:55 And another person.

36:59 That we can raise together. I decide it's really made it put things into perspective for me.

37:06 That we did get a second chance in the whole second chance business.

37:14 Knowing I have to face surgeries further on in my life for my heart isn't isn't the greatest thing. Also, you don't want to think while I'm going to have kids and then eventually down the road, but just something I'll have to deal with they like the look of your heart right now that it's the ejection fraction, which is a big thing in cardiologist terms Cardiology terms is 55 a normal EF for ejection fraction is 5270. So your normal

37:46 Your last Echo before we left the hospital was quote completely normal.

37:52 So the main thing we're looking at is in probably a dozen 10 or 12 years having your heart valve replaced because those are not

38:00 Forever

38:03 But we did that mean that's peanuts compared to

38:07 I know you can do it.

38:09 And now you know what to expect.

38:18 Well, I am so proud of you and I know that your perspective on all of this is so much different than everyone else's but you did come through.

38:32 Something that they said you wouldn't and all of the odds were stacked against you.

38:38 And I just think that you're so strong, and I'm so happy that you picked me and I'm so glad you married me and I love you and thank you for doing this interview with me.

38:49 I will thanks for doing the interview. I love you, too. It's thanks for having the strength to stick with me through all this. I know you haven't got a lot of sleep a lot to eat anything like that, but

39:03 Heinz definitely meant a lot to me and it helped me get through everything. So, thanks again.