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Carlos Granados Podcast
Welcome to the Carlos Granados Podcast. In this podcast, I will discuss my health journey, news, updates, and educational content surrounding my life, and anything and everything that I enjoy. This is my introduction to my new podcast through "Youtube Podcast". I decided to expand my horizons and let you into my life outside my health journey. You can watch clips and full videos in 4k on my YouTube channel "Carlos Granados".
Carlos Granados Podcast
Miranda's Courageous Battle: A Lung Transplant Journey of Hope and Survival
Imagine facing a future where every breath is a battle, and the only hope lies in the gift of a new lung. Miranda returns to our show, bringing her incredible spirit and raw honesty about her pulmonary fibrosis and lung transplant journey. Together, we explore the trials she's endured, from rigorous testing for transplant eligibility to the emotional acceptance of life-altering changes. Her story, steeped in perseverance and hope, serves as a powerful testament to the human spirit.
Our conversation then traverses the complex terrain of organ transplants, where I share my insights on the regional limitations and detailed matching process that can be the difference between life and death. We honor the selflessness of donors and the touching stories of those who've walked this path, including a rare instance of a direct lung donation. The episode also sheds light on the vital need for physical and mental preparedness when facing the rigors of high-risk surgery, illustrating the gravity and courage wrapped up in such life-altering decisions.
Wrapping up this emotional rollercoaster, we delve into the profound impact that sharing one's journey can have. We celebrate the connections made through personal narratives, like the surprise interview Miranda gave on Telemundo, which rippled through her community and reignited long-lost friendships. This episode doesn't just spotlight Miranda's resilience; it underscores the collective strength and comfort we discover in the shared stories of our lives, a beacon of hope that illuminates our darkest times.
ladies and gentlemen, welcome back to another episode of the carlos granados podcast. Uh, and today I have another special guest bringing us an update with her life. But before we get to her, uh, I want to thank you guys for everything that you've shown me recently I think it was today I uploaded a picture of you guys and the love that you guys have shown me in my channel that we have 500 downloads already on all the audio platforms for my podcast. That's excluding YouTube, of course. You're away from the view, so I appreciate you guys so much. I'd love to forget that. You can subscribe to the channel and also, uh, you can listen to this podcast on amazon music, spotify and apple podcast. But without further ado, let me introduce you again to miranda. Welcome back to my channel and welcome.
Speaker 2:Welcome to the to the podcast hi, thank you for having me again yeah, so last time we recorded it was not a podcast episode.
Speaker 1:Last time it was like a regular YouTube thing. But now I'm bringing you on the podcast so we can make this a podcast episode and, of course, you know we're going to have some shorts eventually for the people to see and other people who are suffering or dealing with similar issues like you are. But the last time we left off, you basically told us your life story, which is like wild, right. But today I feel like I wanted you to share with us, first of all, some of the updates that you have for us and what's the process has been like since we left off. So if you want to start off with that letting us know how you're doing, what's been going on in your life recently and then give us an update on what's been going on with your pulmonary fibrosis, Okay.
Speaker 2:So I think, since last time we spoke, I was just barely getting in the process of like getting listed. I wasn't listed. Yet I think they had deferred me, like they had put me on pause. They weren't going to give me a yes or no answer if I was going to get listed or not, because I had like come across a bump which was the esophageal manometry test. Yeah, that oh my god, can you share that experience.
Speaker 1:By the way, what? That was like for you, because I know I've gotten one before and I want to hear your experience well, the test itself sucked.
Speaker 2:It was horrible. Um, I think I did the ph and ps1 too, like the 24 hour one that one I couldn't eat at all. It was very, very painful. Um, and then also the menopause test was I just I couldn't breathe, I didn't have my oxygen on because they were going through my nose, I believe through your nostril correct yeah honestly, it's like kind of like a blur.
Speaker 2:It hasn't even been like six months, I don't remember. I have to go back to my videos because I recorded it. Um, they went through my nose. They couldn't, they couldn't put the probe down my nose right and they were hurting me. They were hurting my nasal passage on both sides. I had nosebleeds. They were trying to bring it down and they couldn't, and then it wasn't monitoring. Well, I basically filled that test, you know.
Speaker 2:They said that um, and my esophagus wasn't really working well, I wasn't digesting food as I was I was supposed to, and that that was like the only issue with the lung transplant evaluation.
Speaker 2:Um, and then they had given me like an option to sign off before considering me putting on the list.
Speaker 2:If, um, if I was going to be getting the lungs, I would have to, you know, in exchange, uh, accept that I was going to be getting the lungs. I would have to, you know, in exchange, accept that I was going to accept a feeding tube for life. So it would be from my nose, first, for the first, like four to six months, which is protocol for everyone that gets a lung transplant. It's not always four to six months for everyone, but for me it will be because technically I will be having it for life, like quote, unquote. And then they would like transfer it to the belly button, one like next to the belly button, like in the tummy, um, straight in the stomach, and, um, I haven't really looked into that a lot because I'm letting things flow. You know they did say that there was like a 10 chance that I might not need that, you know. Know for life, uh, feeding tube, and I'm holding onto that, like I'm holding onto it.
Speaker 2:Um yeah, there's like hope there, so I'm just not trying to focus my mind so much into that. Um, very drastic change in my lifestyle post transplant. Um, but that was the only issue.
Speaker 1:I don't want to interrupt you, but I do have a question, uh, because, um, I think this is important to kind of remind us. Can you remind us? The reason that you can't uh, you probably will have a feeding tube is because you have problems with your swallowing and your food, correct? That's the reason you were doing the testing, like the monometry testing, and then the uh, the 24 hours of a juice study so those tests are actually part of the transplant process.
Speaker 2:So whenever, uh, I went through the process, I went through like numerous amounts of testings from head to toe. I'm talking about like full body scans, bone density scans, um swallow tests, a bunch of ct scans, a bunch of blood work drawn, um what else? Uh, gotta check my teeth, you know, make sure that everything's like from head to toe, everything dermatologist, psychologist, like everything, everything checked off. I was like almost a perfect candidate, but then that's where, um they that was the last test I did and that's where I hit the bump.
Speaker 2:So, basically, I don't have issues swallowing. I have issues with the food staying stuck around my sternum and not going down properly. It just kind of drops like with gravity. That's what they said um. So, with that being said, um, they were concerned that because I have issues with my esophagus and I don't have um the proper muscle anymore, it's kind of like gone. Um, they said that it would be like high risk with new lungs because I would aspirate food into the new lungs and then, since I would be immunocompromised from the lifetime um medications for anti, their anti-rejection medications my body will not be able to fight off those infections or whatever food you know aspirates into the new lungs wow, and we don't even think that.
Speaker 1:I think about that as, like human beings, like when you are healthy, you don't think about that food can do so much damage to you. And the craziest part is you need food and you know being able to drink water to live. You know what I mean. So simple things as food and I know that I have a little bit of appreciation for eating and stuff like that. Um, since I started suffering from GERD and you know other acid reflux and regurgitation, so were you telling me that I understand just a little bit of what you're going through? Obviously not to the extent that you're going through, but, um, how crazy that is.
Speaker 2:But, uh, keep going oh well, I mean pretty much that's. That's the only bump that I've had so far with my transplant. And then I signed off on being able to accept that uh feeding tube if, if it were to come to that, they approved my uh transplant listing almost two months ago. I don't have the exact date because, honestly, I've been, I've been living. I wish I had that, that date on my mind. Right now it's somewhere on March, but I think it was like March 12. I'm not sure, don't quote me on that, but you know it's just like I've been. At first, when I got listed, it was like unreal. You know, I cried a little bit. My husband was like crying too. You know, once I got that email and I was reading the official letter, I was like wow, this is so real, like this is getting real.
Speaker 2:Um, I shared it with my, with my peers, and I shared it on instagram, you know, just to update everyone who's been following me since my, since me going public with my story your journey I've had nothing but positive thoughts and vibes from everyone.
Speaker 2:You know it's it's been slow and I I thought it was going to be something quick but it's been pretty slow because, um, I'm considered a tough case with having someone match me because of my antibodies. So that's actually another, another factor that plays really big into matching with someone like a donor, because um of the antibodies I have high antibodies, so that makes it harder for me to find a perfect match. And it's very important to find someone so close to your antibody. They're kind of close to your profile, so your body doesn't reject the lungs.
Speaker 1:Gotcha, which is important. Two questions, by the way. So one of them can you explain to the people exactly what being listed means? Because I remember you telling me something along the lines I thought originally that being listed, you got listed, listed all around America. But it's not the case, right, uh right. Can you explain so what? What exactly is that so? So you can educate us?
Speaker 2:so I actually thought that too. I thought that once you're listed, yeah, and even though even when I was listed, like I was active already on the list, I was like, oh man, they're gonna come out from anywhere in the nation, like 50 states, from anywhere. So I'm based in texas and I went to the you knows website because I was, like you know, kind of doing some digging to learn more about it. And there's regions. There's, um, I don't know how many regions there are, but there's multiple regions, let's say I want to say six, ish or seven regions, and they divide them by states. So my region is only two states, it's texas and oklahoma. So that and I'm active in texas because that's where my home hospital is.
Speaker 2:So since my hospital approved me, like the transplant facility that I'm at is in tex, which is my home hospital, I can only receive the donor lungs from Texas or Oklahoma. So I'm not active. If I have the perfect match in California, they won't go to me, they will go to someone else because I'm not active in California. And if I want to be active in California, I have to go to California to another hospital. I have to do the evaluation again with them or they have to be able to accept my eval from here, from Texas, just for me to go straight to listing over there. But then insurance comes into place. So if my insurance is willing to have me listed on two different states at the same time, and then also if I'm in Texas and they call me in California, I have to fly out and make sure that I'm there on time for the lungs. So it's just better to stay at home.
Speaker 1:Right, got you. So what if, like the person in California, for example, what if nobody's a match? Is it a possibility that they reach to another state, or do you know?
Speaker 2:or it's that like uh you know it's kind of tough saying that no one's a match because you're trying to um there's other factors that play with it, so let's say there's a donor available.
Speaker 2:Um the match, it's like a percentage. There's matches that are like perfect matches. There's matches that are not so perfect. There's high risk lungs there's there's lungs that are not viable, meaning that they're not even, like um, able to be transplanted. There's lungs that are that have like um. They could be a perfect match and then they have a very minor like defect. Let's say that they have maybe some kind of um issue. Once they see them, they're they don't. They're not in perfect state so they're not even worth getting them transplanted. So it's not about having like a perfect match, like like um, matching in in more of a like, I guess, uh, dna or whatever you want to say like that but it's I.
Speaker 2:I would say that no, no, um, organ goes to waste. They will just give it to the next person that is as close as possible matching gotcha and uh, can you remind me again?
Speaker 1:uh, do you, I think you told me does. Does the size of the person matter as well? I think you told me that.
Speaker 2:If I'm not mistaken, yes, so everyone's chest size or torso it's different, obviously. So I would not be able to get lungs from a man at six feet tall, be able to get lungs from a man that's six feet tall. I'm five, three and I'm a small person, so I would probably have to get lungs from someone that matches my description, I would say around the same size, because I mean, they're not gonna cut the lungs any smaller and risk them from getting, like I would say, um some kind of infection or because they're like cutting them smaller, it's just not worth it to be honest.
Speaker 2:So that's more. That's part of the matching process too, and then also blood type and stuff like that.
Speaker 1:You know I don't know if you saw this so a couple weeks ago I had a friend that passed away and she was a female and she was young, she was a smaller size I think she was five foot something and, you know, after I got the news I felt obviously devastated but I thought about you.
Speaker 1:I was like, because she died in a car accident, I was like in this situation I would have loved to like go to the family and be like yo, you know, is there any way that you can?
Speaker 1:But I didn't know about, like, really, her passing until a couple days later and of course, the family and I and their family, we haven't been as close for a long time, so obviously I'm not gonna go up to them and say anything, but I thought about you. I was like I wonder if, like, her lungs could like fit miranda, since like, but obviously a lot more goes into it than just, like you explained, than just, you know, just the lungs itself of a person, right, yeah, but I thought about it and I was like man, what a beautiful story that would have been if, like you know, that could have been an option. But I don't know what, what actually they, they did with her body. I don't know if they cremated her or they just, you know, bury her or whatnot, but I thought about you and I was like, yeah, carlos, it's not that simple yeah, no it's not um it's not your friend.
Speaker 2:I'm so sorry to hear that, but, um, yeah, I've heard. I've heard there's there's cases about that. I think I came across something on my Facebook from the trans man group that I'm in, that there was someone that lost their friend from pulmonary hypertension it's a different lung disease from what I have and they wanted their loved one to specifically donate to another person with PH and they were able to do a direct donation to the person that needed lungs, which is crazy.
Speaker 1:So that is a possibility.
Speaker 2:You can do direct donations.
Speaker 2:It is, but I think the recipient was a child. That's the different part. The recipient was a child or the donor was a child. It was a young girl that passed away with her mother in a car accident, I remember now, and she had pulmonary hypertension. Or the family I'm sorry, the family had pulmonary hypertension, I don't know who, it was, someone and then they were like so close to it, that ph thing, and then they gave it to someone that needed lungs and they were just they weren't matched. I have no idea how that worked, but you know, um, that person was very lucky to receive the guns wow, what a story.
Speaker 1:What, what a story. So then, since the last time we spoke, do you? How are your testings now like? Are they? How? Have they gotten better? What's your percentage of your lung capacity has? Have you been tested for that? I know you get tested often like what? Can you give us an update on what's that that's been like?
Speaker 2:so when we, since we last spoke, I kind of I was, I was kind of sick, I was still trying to like recover from the energy, I wasn't really active, I wasn't really doing much. I was trying to walk, work out, keep myself active. It was very tough, I had so much fatigue. So my testings they stayed the same from last time. As far as like breathing, um with the pfts and all that stuff, my percentage is still in the low 20s, it's.
Speaker 2:It hasn't gotten worse, which is good okay, but it hasn't gotten better better either but the good thing is that I did notice that my ck levels from my myositis are in the normal range, like finally they're in the green, which is is good.
Speaker 1:Let's go.
Speaker 2:It is. That's actually very important in my transplant process because they want to make sure that my myositis is controlled before I get the lungs, because my myositis if it's crazy and it's not controlled, they won't transplant me.
Speaker 1:Oh, yeah, so even that has to be good.
Speaker 2:Yeah, yeah, they're like. Your myositis needs to be controlled, because if there is not controlled, if it's not like um, what's that word called like whenever it's like in remission I guess either in remission or under control we won't transplant you, we might just pause you again because your myositis is. It's such a very bad disease that it will attack the lungs and I'm just like okay, but so far I've been pretty good awesome.
Speaker 1:Yeah, that's good to hear. That's. That's amazing. Now let me ask you a a deep question. I guess this is more of a personal question, but let's say, hopefully that everything goes right and you end up getting a transplant.
Speaker 1:Now, as a someone who's gone through surgeries before obviously not nowhere near what you've had, but I've had a catheter ablation, which is a heart surgery, at stomach surgeries. In the past I've been put under plenty of times. I'm not proud to say that, but I ain't going to lie. Some of the some of that sleep is one of the best sleep you get in your lifetime. They put you lights out. But I guess, as a personal question, what are your looks on the surgery? And you know there's a possibility that you know it could not work out just like any surgeries. How do you look up, how do you go about that, what is your look on that and what do you think about that? I know it's a it's a deep question, but I'm really curious of what's your look on that. Or maybe are things so bad to the point where, like you're willing to risk it and you're willing to pay the price of you know, whatever happens happens right?
Speaker 2:so, um, I'm glad you asked that, because I haven't really told people this, um, but recently my pulmonologist told me, about two weeks ago, that I need to gain weight because I was losing weight and this will this you'll understand why I'm saying this I was losing weight, I needed to gain weight. They're like you need to gain weight because I was losing weight and this will this you'll understand why I'm saying this. I was losing weight, I needed to gain weight. They're like you need to gain weight. This is very, very important because of the surgery. It's high risk, like you're becoming more high risk if you don't gain weight and you need to start being more active. If you don't, if you don't become more active and start working your, your, um, um, your feet, your legs, they need, you need to strengthen your legs more, because they're gonna put me to walk as soon as I wake up from surgery. They're gonna put me to walk, um, and then I need to have strength in my legs and I need my chest to be strong for surgery. Um, my arms and my, my, my chest. So I was like it was kind of like a wake up call. He said that if I don't, if I don't focus on that, I will become more high risk, meaning that I might not survive surgery. So it was.
Speaker 2:It was a wake up call, because ever since he told me that and I had already knew that, but I didn't know it was that serious when he told me the second time, I was like you know what? What am I doing? One day I just had a burst of energy. I'm not kidding you. Ever since that next day, I have not stopped perking out.
Speaker 2:I did two miles and a half yesterday, nonstop on the treadmill. I am doing upper body workouts. I went back to physical therapy. Twice a week I've been walking on that treadmill. I've been closing my circles on my Apple watch every day. Wow, I'm so surprised with myself. I'm like I've never been an active person. I've never liked working out. I've hated walking my whole life because I've always been short of breath and I just bump up that oxygen to like seven liters and I'm like walking and walking. I'm like I'm gonna survive this surgery. So it's kind of scary knowing that it's it's high risk and I also gained weight. I went 120 now. So I'm just like so happy weight that you have to weigh.
Speaker 1:Like what did he say? Like you just need to gain weight in general, or is it like a certain, like uh limit that you have to get to?
Speaker 2:well, at the beginning I was 103 whenever they took me in they wanted me to be 115 by the time I got listed, which I was, but then when I saw him again, I was 109, which was no, I'm sorry, not 109. I'm sorry. I was 115 when'm sorry, not 109. I'm sorry. I was 115 when I when I got listed and then I was 112 when he saw me about two and a half weeks ago and I just started eating, snacking, eating and snacking, like a bunch of things that I'm supposed to be eating to gain weight, and now, like I weigh 120.
Speaker 2:So I'm just like I'm getting crazy and I'm taking like these protein shakes that they're helping you gain weight. They have like a lot of calories and stuff. So, yeah, they just want me to gain weight because after surgery I will, I'm gonna lose it. They don't want me to be too skinny so skinny.
Speaker 1:Yeah, yeah, I told you last time I was like, um, when you were sending pictures for like the thumbnail, I was like you look more vibrant, like you look. Sending pictures for like the thumbnail, I was like you look more vibrant, like you look good. You look like the only thing, that like, if I see you, the only thing, the reason I know you're something's wrong or you're sick is because of the tube that you have right, or else I wouldn't even be able to tell that you are like dealing with any, because you look really, really good. So I'm like man, like this is you're getting better. And I didn't know that you were feeling really bad, even when we recorded last time. Maybe you might have told me, but I might have forgot. But man, that's a, that's something that, like, I feel like it's, it's, it's a good sign. Right, we're going, we're moving in the right direction. But talking about the you know moving forward, then what is like the plan from now on? So now is just a waiting game for your lungs yes, it's just a waiting game.
Speaker 2:My phone is on. Do disturb me please, like I cannot put it on. Do not disturb you have it on the opposite, I don't have a person with like dnd after 9 pm and 9 am, do not call me, I will not answer. But now it's on, it's on loud speaker. My phone is not on silent anymore, it has to be on loud. I have to pick up any and every phone call I get in there. So if I get like those uh, what's that collect calls? I gotta answer them the spams?
Speaker 1:yes, and that is because anytime a phone call can come in and it could be for a transplant yes, and it could be from.
Speaker 2:if they said that it might not be a hospital number, it could just be um, a random number. It doesn't even have to be a local area code. It could be a random number and I have to answer it. But my husband I think he's second in place to receive the call if I don't pick up first and then my mom and then my brother, but my brother's not going to pick up, like I have to answer it.
Speaker 1:Dang. So you have to really be on the lookout, for just in case.
Speaker 2:I want to be the one receiving that call. I don't want my mom or my brother to pick it up Like I want to be the one getting that excitement. I don't want them to be like hey, they called you for the new lungs.
Speaker 1:Go get ready, go straight to the hospital. Yeah, I wonder how that, how you feel that day, um, cause, yeah, cause, uh, I don't know if you ended, I don't know if you finished answering the question on like, what are your thoughts on? Like answering the question on like, what are?
Speaker 1:your thoughts on, like you know, um on, you know the risk, you know and the surgery and stuff like that. Are you just, do you feel just excited because you, you believe that the outcome is just going to be, I guess the upside is just so much better than you know, even risking, you know, I basically died you know, um, I think it's worth it.
Speaker 2:I I've always been a person that has risked myself, especially when it comes to something that I want, um, and I think me wanting to continue to live. I think it's worth the shot to at least try, you know I, and if I do pass away throughout during the surgery, if I don't make it, I can at least say that I tried to the very end.
Speaker 2:That's why I think it, to me, is worth it. I'm young, you know. I have not lived all the way yet. You know, live my to my fullest. I have a six-year-old daughter. I have a husband of almost 10 years. Like I want to continue to live and I will make it to the end. If you know, if it doesn't happen, I don't want to focus on that, obviously. I don't want to focus on the bad. I want to focus on the good, because I think it's also a mental tool. I got to prepare my body, I got to prepare my mind for that very, very high risk surgery. But to me it's worth it. It really is, and I I just hope nothing but the best yeah, that's a that's a great mindset.
Speaker 1:I I respect that. First of all, I respect the fact that you know you kind of, if you do go out, you you want to go down swinging, you know you want to. You want to go down knowing that you're shy, exactly.
Speaker 1:You know what's crazy. I don't know. This is very common in people who are dealing with health issues. But I feel the same way. I have the same sentiments. I'm in the point where, like you know, whatever happens to me, especially if it's through health issues, I want to go down fighting. Man, I want my family to know, I want to let them know like I fought, you know, I didn't just give up. You know what I mean. And it takes some time to get to that mental space because a lot of time is just going down, you know. But eventually you kind of start climbing up and you're like, hey, you got one life and this one life you want to fight. You know, you want to leave something behind, uh, even if it's a small part of your legacy, so people can remember that, especially your daughter, you know of course, yeah, no, definitely.
Speaker 2:And you know I'm not gonna lie to you and I'm gonna say you know, oh my god, you know, I was around always. People always tell me like you're so resilient, you're so, you know, that's just what I show to people, because I mean, what's the point of being negative? I don't want to spread negativity, like that's not what I want to do. And I keep my negative thoughts to myself, because I do have some Sometimes, some days, that I just feel like, oh my God, I'm defeated, like you know, just I'm over it, like I just want to throw in the towel. And you know, there was a I think it was about a month ago that I did feel that type of way. You know, I had like a little episode where I'm just like I'm so done, like I'm done, I don't know what I'm doing Like is like I'm so done, like I'm done I don't know what I'm doing, like is this even worth it? I've had those thoughts I did and they're they're how can I say it? They're just very toxic and I was.
Speaker 2:I had to snap out of it and I'm just like I just go to my phone and I look through my pictures and I see my daughter and I'm just like there it goes. There's my motivation. I just forget about the negative stuff. I just clear my mind and start focusing on the future and try to see the light at the end of the tunnel.
Speaker 1:Yeah, I understand that. I understand that so much. A lot of people don't see the fight that you go through. They hear sometimes about your constant struggles because of the constant updates you can give people. I know, in my case I do, and they don't, you know, and sometimes they're like dude, you're so strong, how do you go about this? Um, and you know you're making this thing happen and you know you so resilient, like you said, but like you don't know that last night I've spent all night crying. You don't know that last week, you know, I felt like I don't want to live anymore. You know, you don't know, that I was literally down for the last three days. But I have to keep moving. You know what I mean. Like you have to keep, you have to keep pushing and sometimes you don't understand where that strength come from, but sometimes you do.
Speaker 1:Sometimes in your case, in my case, family, you know, friends, uh, for me it's always been the um, uh, kind of leaving. You know part of your testimony. You know what I mean. It's better. You know hard times are always going to be there. So why spend all the time, you know, either down or just being ready to be happy if hard times are gonna come and go, you know. Might as well start trying to be happy while you can, even during the, the struggles, um, and the situation that you're going to. You know what I mean yeah, just focus on the.
Speaker 2:Try to focus on the good and not the bad. There's no I honestly think that there's no. There's no reason for us to keep focusing on negative thoughts and and blur our minds, because it's really not worth it like the time. Just just focus on the good and try to try to make it through. Like life is not easy it's not easy, but you make the best out of it correct, man.
Speaker 1:You know, sometimes I wish that, um, a lot of people that, or people that listen to my podcast or even watch the youtube channel sometimes I just wish like they see your story and they take that seriously, like the fact that you can, just if you, especially if people you know, if you don't have any health problems, you know for the most part you're doing well how precious just a deep breath can be. Well, I mean, when is the last time that you were able to say that you were, you were able to take a deep breath, miranda?
Speaker 2:Yeah.
Speaker 1:I don't remember you can't remember.
Speaker 1:Yeah, it's been so long and I wish people understood that sometimes the simple things as just breathing, being able to sleep normally, being able to go out without thinking about you carry your oxygen tank yeah, what I mean. I know sickness is sucks, is it sucks? But people like me and you and a lot of people in this world, it gives perspective to life. How simple things are so important and they can be so big and once that's taken out or, you know, taken away from you, how like much you forgot to appreciate it.
Speaker 2:You know you forget that, you forget how privileged.
Speaker 1:You are exactly, man, exactly, and this is the reason why I love bringing people like you in my channel, because I don't want people to forget that. I want people to embrace and appreciate life before things get taken away from it, because gratitude is important to have, you know, just being thankful for the little things. I know it sounds corny sometimes for people to say when people say it, but when people like us are saying it, I think they should. You know it has a little bit more value into. Like yo, make sure you appreciate that part of life no, yeah, I, I definitely agree.
Speaker 2:You know, and and it's just simple things in life that people take for granted, like being able to cook, being able to drive yourself, shower yourself, like do you? I don't think people understand how hard it is to feel that you need other people to take care of you to the team where they have to shower you or they have to cook for you daily. Like to me, at first I felt a little useless. I felt like I was just there, I was just living, like I was just there. You know, I was just like a rag doll. I would say maybe I was just, you know, I just existed.
Speaker 2:That's what I meant to say. And once I started feeling a little better, a little burst of energy that I've been having lately, that I've been taking advantage of, I can finally feel like I'm a little better, a little burst of energy that I've been having lately, that I've been taking advantage of, I can finally feel like I'm a little bit more independent. And it's the little things like that that make me happy and make me continue to keep going. And for a person that's normal and has never really been sick, yeah, I don't think they'll ever understand where we're coming from in that perspective.
Speaker 1:They'll never be able to appreciate taking you know a shower on their own, or being able to appreciate or feel how, how it is to be independent with being able to shower or drive or cook or clean their house by themselves, unless they go through the struggle that we go through as people that are chronically ill, unless they go through the struggle that we go through as people that are chronically ill, right, yeah, one of the best examples I always give people is like I remember when I was healthy and I was younger, I was able to sleep like eight to 12 hours, no problem. You know, like it would sleeping was. I would go to sleep whenever I wanted and I will wake up and you know, no problem, never even a thought of what's going on. And now that I can't really go to sleep whenever I want to, I can't stay asleep for more than like four hours a night Sometimes, uh, constantly waking up. It's like man, I can't believe, like I never appreciated such simple thing.
Speaker 1:Obviously, there's no way for you to grasp and appreciate that, because you feel like it's part of life, you feel like it's normal for you to sleep, right, but now it's like how much did I take that for granted? How simple it was just to take my ass to sleep. You know what I mean. It was like something so simple. So I appreciate you sharing that. I appreciate sharing that story. So, going back to your, to your lungs so right now, uh, and your lung update, so you don't need to do any more testings, no more updates, or is there still like a still process that you have to keep up until that phone call come. Uh, comes to you one day.
Speaker 2:That's a good question. So basically, since I've been listed, the only thing that I have to do other than weight is like they have to keep monitoring my levels. Um, I'm taking a new medication called tacro, which is an anti-rejection med. They want to wean me off another medication that I'm on right now and just keep me on the tacro so I can, like, start my body, starts uh being introduced to it, so for post-transplant. So right now they're just doing like, um, blood work, uh, every two weeks, make sure my chakra levels are in the good range. And then I'm also doing every month they're doing a full uh blood panel and make sure that you know everything is good with my white blood cells, my red blood cells, my CK levels, pretty much everything, and then also my antibodies, that they're still in the same range or lower, hopefully, but other than that, and then I also do, I think, monthly appointments with transplant.
Speaker 2:I do my six minute walk, basic PFTs, and then just a follow up, and if I get sicker I have to go tell them. And then they have to keep doing more testing to make sure that my lungs are either stable or if they got worse and if they did get worse, they bumped me up the list on my number so I can get like lungs faster, but right now I haven't really gotten sick. Um, so I'm still in the same number. I think I'm in. My number is 26. That's what they said, which is not not that um not that number yeah, it's not, not priority.
Speaker 2:I think it's like from zero to 100, zero being like you're not that sick, and then 100 is like you need lungs, like now right, that makes sense.
Speaker 1:So, wow, okay. So quick questions. How many medications are you on, by the way, like total, um?
Speaker 2:so, right now, I've never liked being on medications, but I know after 10 so I'm gonna be like on dozens of medications. So they say but but right now I'm on two prescription medications.
Speaker 1:I'm doing?
Speaker 2:Yeah, it's not bad. I'm doing Tacro, I'm doing Zell Jans, which helps with my myositis, and then I'm just taking a vitamin D once a week because I'm like super vitamin D deficient. And then I'm taking vitamin C supplements, iron and then I'm taking another I think it's another medication to help with my, to boost my um, so I can get hungry. That's pretty much it.
Speaker 1:Uh metabolism.
Speaker 2:Boost my metabolism.
Speaker 1:No, I think it's Just get hungry.
Speaker 2:No, I don't get hungry if I don't take it Like I just I forget. I used to forget to eat.
Speaker 1:No wonder you were weighing 100 pounds, girl.
Speaker 2:Good Lord, the food was just like, like I don't want it, like I just wasn't. I would be hungry and I would see the food and I would get fooled by just watching, looking at it or, like, smelling it.
Speaker 1:It was weird man do you feel like any of those medications like like, have any side effects on you, like uh. Do you like, for example, like gastro issues? Do you ever feel like it's uh, does it bother your stomach because there's too strong, or like any side effects from those um but you?
Speaker 2:feel like your body handles them well so so far my body handles it well, except the iron pill. I took the iron pill the other day and I was like super nauseous, so I'm gonna have to take that with food. And then I also started another medication, like two days ago. I'd like to be about that. It's called sulfamethoxaxle, it's to let's go you know that one yes oh my gosh, I think that one gave me heartburn wait so.
Speaker 1:So is that the okay wait. So if I'm as that, I took that for bacterial infection.
Speaker 2:Yes. Oh it's the same one. Yeah, they said that they're giving me that so I can avoid infection, because they thought I had a small infection not that long ago, so they cleared that.
Speaker 1:That's crazy. So I took that for my bacterial prostatitis issues and yo I mean that. How do I feel about my the sofa, I mean everything.
Speaker 1:I didn't feel like it. It was uh, um I. I I'm sensitive with like, uh medications, so I didn't feel like it was. I'm sensitive with like medications, so I didn't feel like it was anything bad. I took that with food and everything was good. I just it didn't help me with my bacterial infection and my inflammation because my prostate was inflamed, like it was. You know, it was enlarged and it helped me kill, like the bacteria for for the most part, which saved my life, bro, because I was going through it. That's another, that's another story for another day. I have so much information on that on my channel that it's it's crazy. But when you mentioned that I was like my brain triggered. I was like I've heard of that because, yeah, people on my channel asked about that medication. Like what medication was it? But another name for that, I think, is back trim, if I'm not mistaken yes, yes, yeah, but I, I, I know the.
Speaker 2:I don't know the real name, I just know the hard name yeah, me too yeah, and it's so crazy how we like know how to pronounce the medications and then the nurses are like how do you say that? Like, how do you pronounce it? I'm just like oh it's called this and they yeah, they kind of get like yeah, how do? You say they're like oh wow, you know how to say that. This is a very tough word. Oh my, you're the nurse. You should know how to say sulfamethoxazole sulfamethoxazole it's so hard sulfamethox, sulfa methyl Zaxyl.
Speaker 1:I think Zaxyl. I think you're right. I think you're right. Nah, that's that's. That's. That's crazy how you're taking that. So, so it's, it's being used to to to kill a bacteria that you apparently have.
Speaker 2:To avoid, to avoid getting an infection Like I think, a viral infection or something like that Like cause I have low immune system right now because of the tackro. I'm immunocompromised I cannot say that word, immunocompromised I can get like a cold like so quick or like I can get like I think it's called pneumonia or something like that Like very easily. So I think the sofa helps not get sick so quickly.
Speaker 1:I recently had a upper respiratory infection. The doctor didn't really say what kind of upper respiratory infection it was.
Speaker 1:But I haven't gotten my sense of smell and taste back. Now I didn't get tested for COVID, right, but I still haven't gotten my like fully sense of taste. Like I'm still struggling with it a lot actually. So I might go get to the doctor and ask like why that could be, but I'm wondering. The reason I'm saying that is because I'm wondering when you get like like upper respiratory infections since you already have, like you know, problems with your lungs how bad is it for you, like how does it really mess you up Like does it feel like it?
Speaker 2:brings me down. I've noticed back then I would just I don't even know how I would deal with the cold back then. But now that I'm like more sicker than how I used to be years ago, um, it just like. I just feel like like a blob, Like I cannot leave my bed. Um, I don't even want to do anything. I don't want to get up and shower or eat. It's just like it brings me down, so bad that I just want to do a sleep. It's so bad that I just want to do is sleep. It's, it's. It takes a toll on me. It really does. But once you know they, my pcp brings me back up. I feel like a new person. He's like an angel, like my pcp.
Speaker 1:He's great that's, that's good. I I was asking because this time around that I had that it really messed me up and it took weeks for it to go away.
Speaker 2:Yeah.
Speaker 1:And I still have, like I told you, problems with, like, my, my taste and my smell and I'm like this is not normal and I feel like this was a little bit different than when COVID was around. So I'm going to have to make an appointment myself to see. Just let him know, like hey, you know this is what's going on, right. Yeah, them know like, hey, you know this is what's going on, right, yeah, so yeah, um, I was gonna ask you a question, oh oh, so really cool, and I want people to hear this.
Speaker 1:So recently I I want you to tell us what the experience was like, because you were, you were interviewed by univision, if I'm not mistaken. All right, so you were interviewed by telemundo recently and I'm probably going to leave the link to your story on my YouTube channel If you can send it to me on the description so people can see it. But I thought it was really good. How was that experience? What happened? How did they reach out to you? Kind of, give us some insights on how that was, because I'm assuming it was.
Speaker 2:Telemundo on your local area, right like texas, right, I think it was telemundo 29 or 39. I don't watch tv but I I know it's one of those. Um, it's local here in dfw in dallas, um. So my sister-in-law actually uh, knows the lady that did the interview. She knows her and they were talking about me and they have.
Speaker 2:She had thought that I wasn't a local, like I, she thought that I lived somewhere else. But then she found out that I actually live in Texas and she was saying that she wanted to reach out and see if I was interested in sharing my story as part of Mother's Day. And she reached out and we agreed on doing an interview like two days later, because she was about to go on vacation and I was like I'm not ready and she said I want to get this story like before Mother's Day and I don't come back until May 6th and I need this like either tomorrow or Friday and I'm just like all right, come Friday. And then it was just like super last minute, but she made me feel so comfortable. She came to my house.
Speaker 1:You said comfortable or uncomfortable.
Speaker 2:Comfortable.
Speaker 1:Okay, okay, okay.
Speaker 2:Yeah, she made me feel really comfortable with her and the camera guy. They came to my house early, I think at I want to say nine in the morning okay, and we were in my living room and we're just talking. They started recording and it was like like a regular, genuine conversation with a friend. You know it was. It was very, very cool.
Speaker 2:Um, I thought I was gonna be nervous and it was in spanish so yeah, actually went on google the night before and I started googling like words spanish, but I know I don't know some. A few words like in Spanish.
Speaker 1:Are you sure you're not a nozavo?
Speaker 2:No, I'm not a nozavo, no, but there are specific words in English that I have no idea how to say them in Spanish, so I Googled them and I'm like this is how you say it. And then I made sure that I taught myself how to say like two or three words that I wanted to say, and I think I did use them on the interview. I'm not sure it was fun.
Speaker 1:That sounds so exciting and it's funny because you're right, the medical terminology like knowing and translating in Spanish is like it's a struggle when I have to go translate for my mom. I'm over here trying to figure out how to say certain words. I forget how to say kidney sometimes, cause I think it's like the word liver, and I'm just like I get it mixed up. I'm like man, that's really, that's really tough. How long was? How long was it in total, by the way? Like how long was it when it aired what was?
Speaker 2:yeah, and I think they aired it at five in the morning and then 6 30 in the morning, and then again at 11 and then again at four, and then I think they played it like. I don't know if they played at night, but they did play at least four times oh, because what happened?
Speaker 1:because wait, when did? When did it air on a mother's day? Like it was on friday yeah, hispanics, mother's day yeah, make 10. Yeah, wow, man, that's so cool. Like being part of that.
Speaker 2:Hey listen, you're making a big impact on people, I know, I know I would never have known that I would be even given the opportunity to like share my story, like on TV, because I'm very like, just not shy, but I'm very private and I think for me it was a huge step to like go on social media and like tell the whole world and I'm like, oh, it's not that bad, and then like TV, that's like a whole, nother level, that's a level.
Speaker 1:We're going like this we're going up, up, up right you make it different moves, but, uh, I'm sure that the way, if you continue, this is what I'm telling you open your youtube channel, girl, because I'm telling you I know, I know, but I'm telling you you're gonna make a continue to make a difference and I'm glad that you got that spotlight because I feel like your story is very beautiful and it will touch a lot of people. Especially come on on Mother's Day. They know what they're doing, that's.
Speaker 2:Yeah, that's a banger. I actually had the other day an old friend from high school call me and I was like what? How did you get my number? She said, oh my God, I saw your story on TV the other day and I had to get your number from I don't know who from, and I was just trying to make sure you're good, like you're getting a transplant. Did you already get it? I'm like no.
Speaker 1:I had to explain to her.
Speaker 2:Like no, it's not. I was like if I had gotten it I would not have answered the phone call. So I was just telling her, like you know it's. I'm like yeah, I'm on the list, I'm just waiting and she had called me and it was just so weird because she saw me on TV and she reached out. She saw me and I'm just like dang, I wonder who else watched it.
Speaker 1:I wonder who else saw it. That's crazy, right, I was still amount of people man that that is, uh, that's so cool. I wonder what that's like. But I'm glad you got to experience it because that I feel like that's a really good feeling. So keep, keep spreading your story. It has, um, what about the instagram? Um, people, have they ever reached out back to you? I know they do a lot. I saw a lot of different stories on well, on there as well. I was thinking about reaching out to other people like the same thing I did with you, and I see, and if, like, people want to share their story because a lot of people suffer from so many different things, man, like so many chronic issues.
Speaker 2:The.
Speaker 1:IG site that you share your story with. That's the reason I reached out to you. It was the clinically ill. Yeah, I think it was something club, I don't remember.
Speaker 2:Yeah, the chronic love club. There it goes. Yeah, there you go. I mean they follow me and they like like my stuff sometimes here and there, but no, they haven't really reached out to like share anything. I would say, maybe they give out shout outs and stuff, but I haven't really like messaged them or anything like that. I don't like to, I don't like to bother. I would say like if they come to me I'll be like yeah for sure, but I don't like to like go and ask. That's just how I feel. And it goes back to like me being like kind of like publicly shy, like I'd rather just not ask for publicity unless they hit me up. I'm like okay, yeah, sure.
Speaker 1:Yeah, no, I feel you, I respect that and you do want to keep her privacy. But I feel, like um, I mean, hey, those posts really be hitting people, man, because I've been reading and, like um, I might leave the link to that so people can see it on the youtube channel and stuff um reading the stories.
Speaker 1:They're, they're pretty those stories are powerful and powerful, yeah, yeah they're definitely powerful, um, all right. So, uh, is there anything else that you'd like to share to the people, uh, that are listening to you, that are watching you? Um, you know anything? Any words? Positive vibes, uh, maybe. What to what should we expect from you soon? Because I definitely, if you were to get the transplant eventually, I would like to have you back on, or like there's like another, like more big news. I would definitely love to have you back on, um to keep people updated. I love doing updates, uh, because I feel like people who ever find my channel and they find your story, they can see that there's more than one video of, like you and your process of, uh, you know, going through all of this.
Speaker 2:You know what I mean yeah, um well, I'm pretty much just going with the flow. Uh, and obviously I will. I will be continuing to uh share, you know, my experience and if I do get the call, the first people are gonna know is my instagram.
Speaker 2:Like you, know, because I I it's like a mass um notification instead of texting people like, hey, I just got my transplant, like I'm about to go get it, like I really just post it so people know, because if I just become inactive it's because I'm like recovering. So I'm obviously gonna try to post it and and record and show like the process. That's my plan to show them, just spread more awareness with that. But I mean, I'm just honestly, I'm just focusing more on myself right now, um, being able to work out and continue to gain weight, and just that's my main focus right now. Other than that, um, I would love to come, you know, come back on your platform and and and update everyone with whatever happens. I don't know if it's going to be next week, next month, and if you, if you want, I don't know it, just it's whenever life decides to give me that.
Speaker 1:Yeah, we'll be praying. I'll be praying for you. I'll definitely keep you in my prayers and, you know, hopefully you get that call soon, even though you know's happening on the other end too of that, so it's like. But you know God's timing, you know Godspeed. I just do want to say I appreciate you again coming back on and sharing struggles in life. I think you kind of appreciate hearing people like yourself and reminding you know, each and every day, that life is a blessing. You know life is a gift and even the little things you have to be happy for, you have to be grateful for what you got Right, even though you may not understand what it feels like something's getting taken away from you in life. But I I feel like listening. Um, what you're doing is helping other people not feel alone. Right In my channel there's a lot of people that always tell me uh, let me tell you something, right, that I don't, I don't open up too much, but so many people on my channel come and um, but so many people on my channel come and they always come to and have these messages of man, I don't want to live anymore Like I'm giving up.
Speaker 1:I mean thoughts of, you know, suicide and thoughts of giving up, and you know the negative thoughts that we've all gone through. You know what I'm saying Like. But something so powerful is I'm so glad I found your channel because I can relate to you, or I'm so glad I found your channel because, um, I understand and I don't feel alone and I feel like you share your exactly and I feel like you share your story, even if it's on my platform. There's people that will appreciate, you know, some of the little things that, even though they might not be perfect or in perfect condition or perfect health, they will be able to understand and appreciate and be grateful for what they have, because you know it is a constant battle, it is a struggle, but taking it at a time and keeping, you know, a positive mindset, it's how you're going to have to go about your issues. You know what I mean.
Speaker 2:Yeah, you know, with you saying that I've received messages like that too.
Speaker 2:I think I received one or two from coming from your YouTube that sent me a DM on Instagram whenever you'd posted that and they were like oh, I found you on YouTube, you know, I saw your story.
Speaker 2:You know, um, I haven't had the same thing, but I have this and it's another like lung disease, but uh, you know, um, I just connected with your story and I want to, I want to see you do good and like they follow me, they just they're just there like watching my stuff and appreciating or like I'm sorry, not appreciating, but like showing love and like being more active with my story. Then I'm just like, wow, like there's a few people out here that are very active with you know, continue to see, you know my stories and and being actively like supporting it, which is not weird, but it's like it's amazing to me because there's it's always usually strangers and it's like I don't know what kind of impact I'm giving them by just sharing my story. As long as it's positive, I'm all for it, and I think that's the good thing about me sharing my story and you sharing yours as well Just giving support and motivation and hope to people out there.
Speaker 1:That's such a great word hope, hope. I feel like that's the last thing that a human being loses. Everything can go to crap, but your hope. If you still have that hope, you still keep fighting. You still have that, and I think that's the reason. Relating to other people gives you more hope, because you're like, oh, they're struggling, but look at them, they're doing so many different things and like, exactly, that's a definitely positive mindset. So thank you again for sharing that. Thank you for coming on here. I really appreciate you and taking your time with me and, of course, we're going to stay in touch and keep each other updated and, again, we'll be praying for you and thank you for coming on the podcast this time around.
Speaker 2:Thank you.
Speaker 1:All right, ladies and gentlemen, this was another podcast of your favorite podcast. This was another podcast of your favorite podcast. Don't forget that you can watch the video if you are listening to all the platforms on YouTube. And well, I usually say this is a 4K, but because we're recording virtually, this will be in 1080p, but, regardless, a lot of my podcasts, you can watch it in 4K. Don't forget that you can listen to all my podcasts in all the audio platforms Spotify, apple Podcasts and Amazon Music. Don't forget to go over there and show some love, subscribe to the channel, subscribe to the platforms and I'll keep you coming with a lot more good content. So I appreciate you guys watching in. I appreciate you guys listening. I will leave every description, even Miranda's Instagram, so, you guys, if you want to reach out to her, you can, and all the descriptions down below in the description of the video. So, thank you guys. See you guys next week or whenever I post a podcast. Take care of each other. Peace and love, baby. See you guys on the next one.