Alyse Ornelas and Becky Anderson Stolp

00:03 Hi, my name is Alyse ornelas. It is February 22nd 2020. I am here with my mother in Fresno, California. My mother Becky.

00:15 My name is Becky. I'm 66 years old my mother to Elise. She is my daughter is February 22nd 2020.

00:35 We were

00:43 We were going to talk about.

00:48 All right. I'll just start out.

00:52 So I think the time of reflection is going back to roughly 2 years ago and it was the end of September September 26th. 2017 2017. Okay. So a little over two years guys fell asleep at the time. I was 29 years old. I had a

01:16 Two-year-old. My daughter was two at the time. I was married and then I had we were expecting our son we have about six months pregnant.

01:31 So

01:32 One day I'm a teacher normal active busy lifestyle and I didn't feel well and so I called in sick to work. My daughter Emily to school called in sick and I went back home and then by midday, I was realizing I was having trouble breathing and I couldn't get ahold of my husband at the time. I'm so can I back up Aaliyah? I do remember right before that. You'd called me. And you said Mom. I'm not sleeping. I it was like a Friday. So you called me up on Monday morning. You said I haven't slept all weekend. And your shoulder was killing you your left shoulder. You said it was his killing me. It was so bad that you had to sleep on the floor. And and you said you took a bath just to try to relax but you couldn't your shoulders hurt. Your left shoulder is hurting. Yeah, you're actually igniting a memory. I have to wear that morning. I did make it into the chiropractor's office.

02:33 I'm because I thought just wasn't being pregnant. My body was out of sync and I need to be realigned. So I did go to the chiropractor and I came back home and then by midday, that's when my breathing has really short and by this time and I couldn't get ahold of Michael. And so I called Nicole my best friend and she advised me just because I could barely get out any sentences over the phone to head to the nearest hospital, which luckily for me. It was is only a mile down the road.

03:07 So I'm I remember just driving up by myself and on the other side of the freeway. That's where Emily was at daycare and I still hadn't gotten a hold of Michael and I checked into the ER I don't even recall if I was even able to other my name at this point and basically from there. It's just a blur of

03:32 Some test

03:34 And

03:36 I don't know who got a hold of who and how that all transpired was. Really that thought. That was all doesn't matter who all came but mainly you were admitted to the hospital and because you were almost 6 months pregnant, they weren't going to give you drugs stay where you are in pain is they were going to run some tests, but you are fairly coherent but I realized at the time no one they have ideas what was wrong, but they weren't doing anything about it because it wasn't one life at that time. It was too lives and they're not making the decision at that time.

04:17 One of the other they're just keeping you both. In the meantime. You couldn't breathe. You just keep couldn't breathe and they were just

04:27 Just putting you on breathing treatments and I was always running down the hall to the nurse. You can't breathe and they said well, you just had a breathing to any with a breath thing was so short but I was wondering why you can get knocked out you are in so much pain that I realized. It was because of your son your baby boy, and then I don't remember that actually are but I was at Clovis Community for two days. And then I remember at one point being like, oh, haha. I have a breathing mask on and you know Snapchatting my friends like how I missing work, but don't worry. Darth Vader will be back soon. But soon the breathing treatments got heavier, and then I don't recall the pain but I recall two Moments Of Consciousness one was seeing my OB outside the window, so and I can recall in that moment. Just the fact that he was there outside my Hospital window. I knew that is LA

05:27 My son and then the second image I have that I can recall from that September 28th is now two days later is helicopter tours. And then from there, I mean we have talked about the pieces and try to fill them in as best as you guys can fill it in for me, but my world went dark for a good 5 days. Well, it was when I came in it was at Tuesday night. Let's say it's 2 a.m. So it's Tuesday early morning. Michael is with you. I was watching them away and but when I got there on Wednesday morning, I took what Emily to daycare still not knowing I thought actually if you had the baby, you know early I thought you would be okay something it was something to do with the pregnancy cuz we were not ever told it was going on and I don't know if they knew but so Wednesday morning I came in.

06:25 And you were so drugged up and I got oh, I didn't even have to wait for the OB. I knew that minute you had lost your baby because it is like this transition you were you're not in any pain anymore and you are just kind of like zombie like you are out of it and I go do this not good and then we heard the OB was coming to talk to Michael.

06:47 Right, so then I'm just fast-forwarding. So what had transpired when I was obviously out of it for several days has I had actually been airlifted to Stanford Hospital.

07:02 And I'm I remember coming to and I was in a room.

07:08 All on my own just plugged up to everything and I just remember seeing a nurse. Obviously. I didn't know I was at Stanford and just why I was still there and I can only recall just being so confused. So you never knew you were in the helicopter. I know at one point wasn't a helicopter because I remember seeing the helicopter door, but I couldn't click together all those moments but I lost in the 5 days and I had just remember the scene before that seeing the OB knowing my son had passed and so I didn't understand why it was still in the hospital setting cuz I thought okay. I'm just one of the unfortunate satistics that has now had a miscarriage and so why can I not go home be with my husband be with my daughter. I didn't understand well, and then it right after the OB had talked to Michael and I'll send the heart doctor at Clovis Community appeared.

08:08 Out of nowhere and

08:11 Call Michael over and I was going to go away and goes you can come to to talk to them. And he says we're going to to take you to Stanford and she needs a heart transplant and Michael. I looked at each other. We would know what I mean the first Nala and then Michaels first words were do I drive behind the ambulance and the heart the heart cardiologist goes? No. No, we need to fly her there. So this whole time. We never knew the urgency. It was just like fly to the Michael asked if he could go then the helicopter and they said no so the whole helicopter thing. I thought that was going to be like in the movies or TV medical shows a Russian name rush. You put you on the helicopter. It must have been an hour. They had we were waiting for you to stabilize her.

09:11 That's how critical you were again. You were so drunk. I didn't realize and even the pilot was just standing in the room for the longest time and I was going what is going on in and you were never rushed out. It was at least an hour an hour or more before they could get everything all and then you were yeah, then you were put on the helicopter. So and then your dad had known the pilot of the helicopter. So actually the pilot not until you landed safely at Stanford. He called this because it was the first time the pilot alluded to us. They were afraid you were going to we were going to lose you on the way to Sanford and it was just like everything was as what is happening. So

09:55 Night, so then

09:58 Coming to at Stanford and realizing I have been on ECMO machine.

10:05 And I can't recall how long it was on that. It was almost two weeks. I was on I think of we can write and then learning that statistic later was scary that I'm 60% mortality. So the fact that I was the 40% it's just that's Lucky in itself.

10:27 But still has first three weeks there were still a haze of it, but it was nice was after those 3 weeks was seeing Emily again because this poor girl being two years old not understanding why Mom just up and laughed.

10:43 And that still jig sign those pieces together those weeks and still not having that Clarity, but just knowing once I did become more coherent having those conversations with

10:56 With cardiologists and heart transplant team of of us a super rare condition which just didn't make sense because no one in our family has a heart condition. Will you have a giant cell myocarditis and to this day it's very rare so they still don't know what brought that on or anything so know anybody has that there's hardly any literature on it. They just know I know at one point. I heard one and three thousand in the world, but I'm not sure we haven't followed up on that but I know yeah just again going back to that life 2017. I was 29 I was active teacher.

11:43 Insane how quickly my world changed but moving forward. Obviously, we spent a lot of time in the hospital. We learned a plan of action. So it was

11:59 September 30th, so I ride to Stanford on September 28th, September 30th. My son was born stillborn. Obviously he had passed in the room and then for all that they were waiting at Stanford date. We had to extract that's what they were calling your son because I'm yeah before infection set in but that you had to be stabilized your heart the ECMO. So there is at critical time. Of when to extract the fetus says that what that's what they were calling and I went into labor cuz I remember one pain and that labor pain they were worried about because you know, it was so if he then so that was there was so many moments. That was so scary that you wouldn't

12:53 Maybe not have gone over the hurt also, they saw even when they extracted the baby your son that he would have made it then it would have been too much on your heart to handle and so everything was touch and go.

13:12 Until okay, so then gain to the the more stable days, I'm still at Stanford Hospital in my entire life has been put on hold and then

13:26 But first it was heart failure you went from heart failure to lvad to transplant. Well, that's what I'm saying. So

13:34 Lvad on

13:37 November 18th, 2017 and is supposed to be the 17th, but you know hospitals and waiting around for everything.

13:49 So that lvad the left ventricle assistant device and how that was. Basically the transplant plants surgery itself, which was you know, cracking my rib cage open my sternum and breaking my sternum and I'm getting Hardware on to my heart that connect to an external battery through my abdomen.

14:09 That battery wire and I just remember like how gross that was and just how much pain I was inside lost a lot of muscle mass and having to carry around that weight consistently not being able to take it off not being able to shower while then when you were handed the lvad they said it's for five years. We didn't know anything about the heart transplant process and we stopped five years. If I even asked will she get another one after 5 years like because we knew Hearts just aren't available. So it was the question of okay, you know, no one ever told us lvad was a bridge to transplant meaning, you know, once you got that energy higher higher list and heavy-duty medication and Stanford was hoping you would

15:00 You know kind of be stable I ask us a question I have why didn't we go straight to a transplant? It's cuz I would have been so low at the list even coming off of ECMO. Like I had to get gas because that you got off at ECMO and they were just using medicines to keep everything. Right and so you were discharged with just medicines until I had all and then I had a flash pulmonary. Yes. No, you weren't discharged home, but you were discharged in the hospital. You got out of ICU, right? And then they were just using all these medicines and they were at the idea was to send you home a stable life knowing your heart's not good. But let's see how many months right and on the day of discharge. I had that flash pulmonary edema that you had not made it decision that you might need a level of medicine. Yeah, you need that. You needed a Next Step.

15:55 And

15:57 I would have been high enough on the list automatically. So we had to go the lvad round. They were just looking to us a measure keep your heart going in and then after it all had we find out you make the list. We were still even thinking transplant, but we knew what you had the lvad it. You just can't have that they allow your on the official list and all that so.

16:25 Now we have learned so much through this process. So then okay. I had the lvad and I remember.

16:33 They said it would take three to six months to heal because you just basically had your open heart surgery or your what would be a transplant surgery and sure enough around the three-month Mark. I start feeling a little bit better and then it was February 22nd 2018 which happens to be Emily's birthday. So she was turning 3 and they allowed or approved for a trip to Monterey Bay Aquarium. I don't know how far that is from Stanford. But I just remember it was my first trip and outing with this lvad and trying to navigate that and then it was stressful because of course there are complications with like

17:16 Losing and just from the site and getting infection yet. If you have an infection in the drive line that connects your heart cuz it was the battery in the lvad that was kick pumping your heart the left ventricle, right and then use my caretaker had to change that wound daily. Yes. Oh definitely. Yeah. So in the meantime, you're on the transplant list and know they had to give me an active while I was healing from lvad surgery will correct and then it was around the time of Emily's birthday.

17:56 That they petition to Uno's.

18:00 United

18:03 Who knows it's the organ donation and they petition to move me up because even with the lvad my numbers weren't improving.

18:16 And then I never knew if I was approved for that petition or until after the fact because one week later on February 28th 2018. I was home after Emily's birthday with the lvad and that's when I received in the transplant world was called the call and I just remember my surgeon Scott number he was so young. He was 31 now. I think you're like 34 and I was 29. So it's not that big of an age difference in the nightman. What am I doing with my life? Like this is a world-renowned surgeon, but he was the one who just nonchalantly like hey think we have a heart don't rush up here. It was a three-hour Drive Right running red lights or anything like that. Probably not going to go well and I can again in the transplant world you get like prepped for a dry runs. They say that some people can get all the way to an operator.

19:16 Cable, and it doesn't come through for whatever reason cuz there are a lot of things I have to match up to make an organ donation be successful.

19:26 So then obviously getting to the hospital and by this time we arrive around March 1st.

19:34 Shortly after midnight and it's just Michael and I and I actually remember that I was the one that drove the whole 3 hours cuz I just remember I was so used to hospital life in this is my life. Now forget my old 29 year old active teacher mom wife life. So I was the one just calm and driving while I remember Michael was kind of freaking out and then yeah just going through an onslaught of Tess and people are starting to arrive even though I'm telling you guys to hang back and what we always were told that when the call came for a hundred million different reasons. It may not be a match somebody that you all came.

20:21 Well, we're not going to just wait for okay, so of course we are.

20:29 And then ultimately Yeah, March 2nd 2018 has 29 years old and I successfully received a heart had a heart transplant. We've always talked about this and 9 months and then people wait for years. But again, I bet if I followed you this before people are born with like CHF chronic heart failure. We had no heart failure heart disease or any heart issues within our family. This is just an anomaly that happened I know about how some people wait for a long long long time and I understand that but which is why it's like now that I return to reality in normal life and I don't really fit into any of these worlds like the heart transplant world. There's a whole Facebook group out there. And of course, I'm part of it and I keep up with stories and you know support

21:28 Encourage other people who are either on a width on a list waiting or they've already had their transplant, but I'm not a person to get on there and really share my story simply because it's people like what you're saying who been waiting forever and there's a guilt that you feel that you're like like kind of just came in and it was either death or transplant right away. So I bumped you all off and I got I got chosen. I know it's not like that but just don't really fit into about your donor guilt. Well, yeah, that's a real thing amongst everyone who's transplant because obviously in order to receive a heart someone has to die.

22:12 Now my donor what we know is just a lot of coincidences.

22:19 I know it's a he

22:23 I know how much to share. I know that he was exactly five years younger than I was so my birthday is April 6th, and he has birthday was April 7th through the day after mine, and I was I turn 30 in the hospital because remember I was trying to plan March 2nd then a month later. I turned 30 so he would have been turning 25. I know that.

22:48 He wasn't local to the area, but he was going to school in the area. So.

22:54 His sweet with we found out things cuz you had Sanford doctors who have a whole team of doctors that loved you, at least they so they like blurted out things. You do like the heart was real local and me and then you ask if somebody I want to say blurt it out. It's not like they disobeyed HIPAA laws. Are you at right? That's correct. But they they kind of said, I think it was Nicole that ass didn't come by are too or did it come by an ambulance and Rye or told by an ambulance. So we knew the hearts and I guess all these were good factors. In fact that they didn't have to

23:36 In a flying a hard and it's pretty close and

23:41 Yeah, but I'm definitely a guilt you carry around daily. I think of my donor daily and just obviously his family is grieving while I get to continue my story and it's just like you don't ever come to terms with understanding why that happens and I don't know if I ever will however long I live off of his heart and

24:07 Yeah, I don't even know the correct words to describe.

24:14 A guilt but it's definitely a heavy a lot of time. So when we were in the hospital and even in our apartment at Stanford, you'd always say I'm doing this I'm not going to put the donor's name is what I'm doing it for him. I'm right, you know, so I think your donor has given you a lot of strength because I'm your bad days you said right and even we've even talked about is there is not a fun fun part, but there is a school of thought out there that you you pick up traits of figured donors, right. Cells at the number one question. I got ya. What do you have and in I think mostly what I've read is it's not true, but there's some people in a few doctors maybe that thing you do because remember what you told me not most recently about you never used to like spicy food, but you're like spicy food, and I know I hope

25:14 Find that out one day cuz obviously we still haven't heard from the family. But I mean, it's just coming up on two year what we call Heart of her story. So we'll see if we someday hear from them. Yeah, I think that's the number one question I get and then I also get just the comments of like oh, wow, you look great and it's like I'm I supposed to look like that then I just it's never comment about like who I used to be. It's always just to come of how do you think this is changed you?

25:49 All my life completely different now will you know that so since starting I gave my titles in the beginning, you know, I was a wife and a mom and a teacher and I'm still like a lot of those things. I'm back to teaching. I'm actually working two jobs now by work two jobs because I'm a single mom now, I'm so through this experience. See now. I have my husband and I got divorced which added just a huge amount of stress and then

26:22 Just I lost my son. So learning how to grieve.

26:28 I'm a child while also raising a child.

26:35 So I was just very different.

26:40 So how's it changed you though? So besides, you know, all the all the stuff your inner stuff your personality. I don't feel like my personality has changed. I think we spoke about this earlier that maybe I've just become.

26:58 A little more

27:01 Guarded and Harden, but on the opposing side of that I try to just live because I'm living for my donor. I'm living for my daughter. I try not to get caught up in the little aches and pains because there's a bigger.

27:21 Bigger things that you should focus on the live for

27:25 Well in 9 months a lot happen, even if I'm being.

27:31 Pregnancy to email from heart failure to lvad to heart transplant right then soon after Michael left till I mean, it was. But I always said that I think and this is just my opinion if he was going to leave for you. It was better in the beginning with all your changes. Like I always told everybody rip that Band-Aid off versus

28:02 Being the good guy hanging around.

28:05 You know for whatever lets you were going to have to face all this new life anyway.

28:12 So yeah, and just a focus on the present. I mean today is Emily's birthday. She's 5 today. I made a couple years ago. I didn't know if I'd even see your Turn 3. So the fact that we're here. We just got back from a Disneyland trip. I mean these things that I get to do like this the future scare you with your new heart. I think I'm unfazed by it. Now. I have encountered death so many times I think on paper 5 times at least, you know, paddles and will you coded coded?

28:50 Now

28:52 Teacher doesn't scare me. I think became the apparent that single thing that scares me but that's a lot of people out in the world. We don't know what all this the single parent keeps your mind off of your new heart. You are on a lot of medication to anti-rejection pills. How many how many how many meds are you taking I remember when I was with you, it's quite a bit. Right? Dark days, at least when we would sit in the apartment and an hour and a half before we're going out and you had to take your meds. They give you like glasses of milk to take him down and you just couldn't take them all now, I pop them in a handful of me. I think of those things and I know it's just it's in San Anto that isn't something else that people say it's like, oh you went through that I could never tell and it's like I guess that's a compliment to bits like I have to remind myself to it's like

29:52 To go back to where I wasn't like that was only a year ago or a year and a half ago. But yeah, I remember just to get you out of bed just to get you out of bed some mornings. I mean it it will either we were living in the apartment. We were going to Stanford. What were we how many miles 5 miles away we had to stay there. We could have come back to home which is very hard. You didn't you only got to see Emily on the weekend. And so

30:24 Are whole days or going to Stamford at least four times a week? You always had to go give blood always we had to go in there. And if that's what I'm saying like yes hostel life is hard. I can empathize with patients who live in there and it's a different world but so is real life. I mean real life just as hard because as soon as I got home, we are faced with new challenges. And so

30:52 I don't know what I'm trying to say here. It's just like I've lived Both Worlds and they're both have their challenges and you just am I scared of the future will know because we can't predict the future and we just have to live in it and Conquer through it. And since your birth you came out happy, you're always always always happy and then in the hospital the doctors all gravitated to you because of your outlook. I was young that it was young and yes, you would say, I'm the only young patient and all the rest of my old out there. I mean, that's the kind of thing that you had the spirit on you the entire time and that's how come you made so many nurse friends, you know, and and things like that because it seemed like they all loved you. Never Annie.

31:52 Oh, you're crazy. Now. I need a nurse Annie from Stanford. She says oh they all love you. They always you know, they always check in with you. They always want you know, and even even the top guy at Stanford how he always searched you out and made a point to talk to you and things like that, you know what I mean? And and so it was your attitude. It was your your outlook on life. You don't think that's where I'm going from here, you know apply that same attitude and Outlook. It's like you just got to embrace a day and bracelet comes that you came out happy. It just came in that way. That's what I'm not obviously help me carry through obviously it was it was all

32:36 You know, it's true that.

32:38 On the on the dark days in there. So

32:43 So so

32:46 So that's your future is your most trying to get through the immediate future of being a single mom, which I think they're getting a lot of people can relate to write.

33:02 I don't know what else I really do.

33:06 One thing I will not just say that I try to remember on my my days is like when we were in the hospital for so long. I mean we met a lot of people I mean and then we were all and we kind of knew everybody's stories of any time we could get out of the room or come back to Sanford. It was a whole life I go. I mean 9 months we were there. Basically I came home a total of maybe what we figured out five weeks not at once but back and forth intermittently came back and it was like the cafeteria the you know, our little walks up. I'm going to always let the people in the hospital. There's a whole life outside the hospital but in every single Hospital, there's people like I remember meeting that lady in the elevator and she had all these Christmas decorations and that person had been there for months and she was coming up to decorate the

34:06 The story after story after angry and we're getting out and how some people you know, I think that's the lesson I take away from this experience and apply it to life now is just every person has a story and we went to hear that. You can't judge a book by its cover. But I mean even look at me now, you can't judge and think what I've been through and I can't be doing the same towards others that I see so it's just really keeping that open mindset that positive mindset and just moving forward with that in my line of work when I set them off I go I just remember our Stanford days. I feel like thanking you don't know, you know this little this is a small stuff and you're sweating. Of course, I can't tell it to them. But you know if I just don't let their their them get to me like we seen

35:04 Yeah, what a lot of life is like and it it I always try to remember.

35:12 You know, that's what I want to take with me from that whole time at the hospitals and it's how many people are there for so long and some don't get out until we did see we didn't you know, they don't announce what we had a death on this but we know from the nurses that you know, there was a code number that one night, you know, she came in and she had to run out and you know, we just knew that when people weren't making it and that was day and that was scary, right? So yeah, just all the stories out there that you always I mean

35:48 We just I like how you always have to talk me up to like, you know, you just had a heart transplant. I mean other people have that too.

36:00 That or how how good they're all doing and and and do things like this. I think I mean we try to like just lump ourselves and was like, oh, yeah other people go through the same things that we do. What am I? What am I missing? I always try to compare especially after Michael left you I always think will you know when people go in the military and when they don't they come back and they've been gone for many many many months and they could have lost their legs or their armor and it's mostly men but women go through this too and then they come back and they try to go back to their home and their two kids and things are not the same, you know, I am a trauma changes people and we've discovered that through the Journey so it's not only the individual who experiences the circle. I mean our whole family Dynamic. I was a 30 year old living with my mother again, like how different that was for us and our relationship never I said, we're going to cry.

37:00 We're going to laugh. We did I don't know too many days, but we did and I go we're going to fight o and we did all that check check check. Here. We are. We so kind of like each other. We do kind of like each other. They always say that that's why I put on that thing. I'm not your caretaker was your former caretaker and we have just come I mean from

37:31 Folsom my independent ways, of course, I know that but you know, that's why I bet it was just like I went we were interested in each other for so long. It was like we were the states again and things like that, but

37:48 To summarize the future Sprite, so

37:51 Part of my story and moving onward.