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Heart to Heart with Anna
Thriving with CHD
January 29, 2019 Allison Holmes
Heart to Heart with Anna

Thriving with CHD

January 29, 2019

Allison Holmes

Allison Holmes is a 46-year-old survivor of CHD. She has seven defects and is also a cancer survivor. She feels that she is thriving with CHD.  She has been evaluated twice for the heart and lung transplant list but is not on the list at this time. Allison has Situs Inversus and her doctors are not sure how to hook up a healthy heart and lungs to the rest of her organs. She works as an ESL tutor from home and volunteers with Meals on Wheels and Carolina Waterfowl Rescue. She is also a North Carolina Adult Congenital Heart Association Ambassador.

Allison Holmes is a 46-year-old survivor of CHD. She has seven defects and is also a cancer survivor. She feels that she is thriving with CHD.  She has been evaluated twice for the heart and lung transplant list but is not on the list at this time. Allison has Situs Inversus and her doctors are not sure how to hook up a healthy heart and lungs to the rest of her organs. She works as an ESL tutor from home and volunteers with Meals on Wheels and Carolina Waterfowl Rescue. She is also a North Carolina Adult Congenital Heart Association Ambassador.

Episode Transcript

Speaker 1:0:00Instead of thinking about all the things that you can't do, you may be amazed at what you can do.

Speaker 2:0:17Welcome to heart to heart with Anna. I am an Torsky and if your program. This is the fifth episode of season 13. I'm very excited for today. Show to future a very special mother. Today. Show is entitled thriving with Chd and for those of you who are new to the program, you may not know. Chd stands for congenital heart defect, but we'll be using chd throughout this episode. Alison homes is a 46 year old subtractor of Chd. She has 70 effects and is also a cancer survivor. She feels that she is thriving with Chd. She has been evaluated twice for the heart and lung transplant list, but she is not on the list at this time. Allison has scientists and versus and her doctors are not sure how to hook up a healthy heart and loves to the rest of her organs. She works as an Esl tutor from home and volunteers with meals on wheels and Carolina waterfowl rescue. She is also an adult congenital heart association ambassador for North Carolina. The first segment will meet allison and discover a little bit more about her heart condition. The second segment will involve us learning more about her medical history, especially how cancer and her heart defects may or may not have been related. And in the final segment, we'll learn about how allison is thriving. So welcome to heart to heart with Anna Allison.

Speaker 1:1:40Thank you for having me. I'm very happy to be here,

Speaker 2:1:43but I'm happy to meet with you and get to learn a little bit more about your heart condition. So let's start with that. You're chd sounds really complicated. Can you tell us more about your defects?

Speaker 1:1:56I have 70 effects with my heart. They include transposition of the great vessels, single ventricle, double outlet, right ventricle, severe Pulmonary Stenosis, Mitral Valve Patricia. I have an ASD and vsd. I also have scientists and verses Totalis, which is a rare congenital malformation in which the major visceral organs or reversed or mirrored from their normal positions. My doctors classify my condition is Eisenmenger's syndrome and as a result of my chds, I have pulmonary hypertension.

Speaker 2:2:34Right. I've actually done a couple shows on Eisenmenger's syndrome and from what I understand, most people develop Eisenmenger's syndrome because they have heart defects that have not been palliated or not been fixed when they were younger and so they developed a pulmonary hypertension secondary to their heart defect. Is that what happened with you as well?

Speaker 1:2:56Well, I did have three open heart surgeries in my. The first one was at the age of one year old. I was given the Waterston shunt and before they even got me closed up, the waterstone shunt started to fail and then Dr Robert Check came in and he performed the blaylock tasking procedure and that surgery saved my life at the age of 19, 1992. I had another surgery. My body had outgrown that blaylock tossing shine and they placed a central shunt. So that was the procedures that I've had on my heart in 2007. I did have a stint placed in my shot due to the cramping and they did that via catheterization.

Speaker 2:3:48Okay. So even though it sounds like your anatomy is that of a single ventricle heart, you haven't had a fontan procedure.

Speaker 1:3:56I know I've often wondered why, and I don't know why that is. When I asked my doctors about it, they say, well, the Fontanne has its own problems. Honestly, I'm just not sure why I didn't get that procedure. I'm not sure when they started doing it and I'm not sure why it wasn't performed on me, but here I am without the content.

Speaker 2:4:19There you go and you're not the only one. I do know of some other single ventricle survivors who have had a bit shot and maybe a Hemi Fontana, but not the completion fraud Tan. So you're rare. I wouldn't say there were a whole lot of people like you out there, but it's nice to see that you are thriving despite the fact that you haven't had the traditional set of procedures that we see with children who are born, but the same kind of condition today. Boy, that is really quite a laundry list of heart defects. So I bet that's a challenge to keep up with all of the different defects

Speaker 1:4:55it is. It took me a long time to learn all that. There were, as a matter of fact, I didn't know until I was older and I started becoming more curious about exactly what was wrong with my heart, so I would ask doctors and they were always vague. So then I asked for medical records and I just researched it on my own through my medical records and then once I learned all of these things and I started asking specifics to my doctors about the situation.

Speaker 2:5:25Well good for you allison. So you had to become your own advocate?

Speaker 1:5:30Absolutely. And even as a young adult learning about my condition, like I said earlier, the doctors were very vague. It's like they didn't think I could comprehend what it was and I had to push and on my own I had to learn about it and I'm not sure why that is. And I hope that it's changing because it's really a disadvantage I think for the patient for it to be like that.

Speaker 2:5:53Oh absolutely. It's a disadvantage for the parents too. I think things are changing. I think that the whole perception, like you're saying, I don't think the medical community believed that the parents and the patients could really understand and I think that is justified in a way because I don't think all of them really understood congenital heart defects in a pediatric population was so new back then. There weren't a whole lot of specialist who knew what was going on and to be able to explain it to somebody else was really tough and now here's the interesting thing. You've lived long enough that you were a little girl when it was hard for them to explain to the parents and to children and you've grown up as the field has grown up now, it's hard for some of them to even talk to adults because you're such a small subset of the population. I think that you've done so many of the other heart warriors out there are teaching the medical community what needs to be known and how to communicate with people at different stages.

Speaker 1:7:04Absolutely. I wholeheartedly agree with that,

Speaker 2:7:07so I have a feeling. You've also been teaching them about heart transplants and lung transplants dealing with a patient with scientists at versus, oh my goodness, girl, could you make it a little harder for them? So tell us about the whole process of being evaluated for a transplant when you have such a complex heart defect.

Speaker 1:7:31Well, that's an interesting story. I was evaluated twice the first time. I actually never got through the entire process because the first time when I was being evaluated this, when they discovered that I had a cancerous tumor in my left kidney and a course that halted the evaluation and changed the course of my treatment from my heart to getting the cancer out of me.

Speaker 2:7:59Wow. So that must have been kind of scary here. You think you're going in for a heart transplant evaluation which can be scary enough on its own? Yes. And then I find out that you've got a tumor growing. So did they stop everything and then you had surgery to remove the cancer?

Speaker 1:8:18That's exactly what happened. They stopped the evaluation for the heart and lung and then I went into oncology and they proceeded with setting up the operation and removing the left kidney and they did not do any of the traditional cancer treatments. I'm assuming it's because of my heart condition. No chemotherapy, no radiation, just removal of the kidney and recovery from the surgery and I went back to my normal level of functioning before the cancer.

Speaker 2:8:52Okay. So you had this evaluation. They stopped it because they found a cancer. It took care of the cancer. But you said you were evaluated a second time. Why were you evaluated a second time?

Speaker 1:9:06I guess because I'm in heart failure. I'm gonna probably have been for many, many years and the evaluation was halted by rebounded from the cancer, so then they wanted to look into it again. Okay. And that didn't get very far either because of the scientists and versus. They looked at me and looked at my chart and my organs and everything and they said, we don't know how we're going to do this. You're not a candidate for the heart and lung. So that was somewhat disheartening because you know, I had hope that would be something for me when when it got really bad, I wouldn't want to do it right now because I feel I have good quality of life. If things turn worse, I would like to have that as an option. I did talk to my current congenital heart doctor and he says that it's not out of the question if things do go bad, they just don't know how they would connect a normal heart and lungs to the rest of my Oregon. So that would be the trick. That would be something that they would have to work out. And I've asked them, has anyone with situs inversus ever had a heart and lung transplant? And they don't know if there has. It's very rare, but the answer is we don't know. I've heard that a lot in my life.

Speaker 1:10:35I bet you have. Yeah.

Speaker 3:10:41Were offering us a mechanical heart and he said, no, I've had enough. Give it to someone who is worthy. My father promised me a golden dressed twirling and held my hand and asked me where I wanted to go. Whatever drive for conflict that we experienced in our long career together was always yield by humor,

Speaker 4:11:01heart to heart with Michael. Please join us every Thursday at noon eastern as we talked with people from around the world who have experienced those most difficult moments. Heart to heart with Anna is a presentation of hearts unite the globe and as part of the hug podcast, network hearts unite. The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the chc community, please visit our website@wwwcongenitalheartdefects.com for information about Chd, the hospitals that treat children with Chd, summer camps for Chd survivors, and much, much more.

Speaker 2:11:48Allison, and before the break you were telling us about your really complicated medical and how it was discovered you had cancer when they were doing that first evaluation. You said it was in your kidney. Was there any concern that maybe it had spread?

Speaker 1:12:07I don't remember. I was stunned. Kind of shocked when you hear the word cancer, you automatically think death, so all of that was kind of a blur. Once they did go in and they pulled the kidney out and they said that the mass was contained inside of the kidney. They said the mass was the size of a small apple. Oh Wow. But it was contained within the kidney and it had not spread.

Speaker 2:12:33Oh good. So it had not spread. Do the doctors feel that that cancer had any kind of connection to your congenital heart defects?

Speaker 1:12:42You know, they never said and I often wondered throughout my life I would go to my doctor's appointments. I would go twice a year and they often did chest x rays. So I have a very curious mind and I wanted to know. So I did some research in some studies show a correlation between a lot of radiation during childhood and cancer in the Chd population. I don't know if it's well known. This study that I read was from Taiwan and there were some other studies as well, but the one that I recall the most was from Taiwan. I know after the kidney was removed and I went back, they never did another chest x ray on me at an annual exam. Yes.

Speaker 2:13:27Well, but you know, I have a son who is 24 and when he was an infant, every time he had a cardiology appointment he would get a chest x ray and an ekg and when he was little they would even stick the pulse oximeter on him and they would check his ear and his finger and his toe to see if there was a difference in his oxygen saturation level. But then as he grew up, they quit doing the x rays and that was really surprising to me, but they started doing echoes more so I wonder if it's similar to you. I wonder if it was that same era that they were kind of phasing out the chest x ray because I think they're really kind of limited on what information they can get from that x ray. The only other time I remember my son getting quite a few extra days was when he was in the hospital and they were looking for pleural effusions and they were take a chest x ray to see if there was fluid around the lungs.

Speaker 1:14:24I never knew why they were doing. Like I said, I was a little bit

Speaker 2:14:27girl. You were a little girl when you were evaluated for a heartland truck?

Speaker 1:14:31No, I was a little girl when I was going and having these chest x Ray. I was being evaluated in my late twenties and early thirties. I just did what the doctors say it shouldn't, but I do have some issue with one of my lungs. It's not fully functional, so I always thought, well they're just looking at my lungs. I didn't know.

Speaker 2:14:51Okay, well that makes a lot of sense, doesn't it? Since you know that one of your lungs has some trouble. So what year was it that you remember? They stopped doing the x rays. You said you were in your late twenties or early thirties?

Speaker 1:15:06When I went back after the cancer diagnosis and then they removed the kidney and I went back, I never had another chest x ray after that.

Speaker 2:15:18So what year was that, do you remember?

Speaker 1:15:20That was in 2001. Yeah,

Speaker 2:15:24in the late nineties, early two thousands when I remembered them phasing out the x rays for my son. So I wonder if that's something that across the board pediatric cardiologist said, you know what, maybe we're doing too much radiation. Kids were not getting the kind of information we need now that the echo's provided so much more information. I wonder if it was just kind of phased out and it was just coincidental that you had had your surgery at around the same time. It's fascinating. I would be interested in seeing that study from Taiwan because I've worried about that. I know that my son was exposed to a lot of x rays himself, but when I brought that up with the doctors, they said, oh, he gets a certain amount of x rays just walking outside. Don't worry about it. Did you ever hear anything like that?

Speaker 1:16:15No, I don't recall. When I was a kid and younger, I didn't ask questions probably until I was in my mid twenties that I really start wanting to know more about my situation and know all the finer details. I just trusted the doctors and did what they say.

Speaker 2:16:33So was there a turning point when all of a sudden you figured I need to take control of this? I need to start asking more questions?

Speaker 1:16:41Probably after that, probably after finding out I had cancer and when I was 18 years old, I started going to the doctor by myself without my mom, without anybody, and I just Kinda took control of my health plan. Even though I was doing well, US kept going to my appointments twice a year because I knew I had a serious issue and I didn't want to not see the doctor because in case something were to happen, I wanted to stay in care. And that's very important. A lot of people when they're doing well, they think, oh, I don't need to go to the doctor. It's a waste of time. They don't go and they fall out of care and then something terrible happens and the doctor's like, where have you been? You know, you should have been coming to see me. I've always stayed in care and I'm very thankful. I think if I hadn't, they may have missed that cancer and it spread to spread outside of my kidney and you know, I may not be here today, so.

Speaker 2:17:41Right, right. Well, I'm so impressed that even though as a young person, as an 18 year old, you took charge of your health yourself,

Speaker 1:17:50you took charge of everything, taking yourself to your appointments and it must have been scary to be a young person in your twenties dealing with all of these complex issues and need to be told, hey, let's evaluate you to put you on a heart lung transplant list. It was scary. It was. It was overwhelming, but a pride, a lot, a lot of faith in God and I just gave it to God. That's what I do. When I am overwhelmed with my health and other things in life. I just let go and let God. I give it to him and I try not to take it back too much. Sometimes I do, but he's never failed me. He's kept me here for all of these years. It was scary, but that's what got me through. So were your parents also right there by your side? Are you talking about when I had cancer or or during the heart and lung transplant evaluation.

Speaker 1:18:43Right. Okay. Well my husband, which he wasn't my husband then, but he's my husband now. He was with me. My mother was actually going through breast cancer at that very same time. Oh my goodness. So she had her own battles to fight. I've always been independent. I've taken on my health myself and they had eight kids to take care of growing up. So you know, I didn't want to be a burden, so I thought I need to take care of this myself. They've got enough to deal with. And then when I was being evaluated and had the cancer, my mom had breast cancer and she had a really hard time. My husband was there with me and he supported me and took care of me. Now they did come up there to a chapel. We'll. They brought me home. They prayed for me. They were there for me in the capacity that they were able to be there for me, but like I said, my mom was fighting her own battle with cancer at that time, so.

Speaker 1:19:42Wow. You were dealing with cancer on two fronts. That must have been so scary. Are you the oldest? No, I'm not. I'm not the oldest. There's eight of us and I'm the oldest daughter and I think I'm the third from the youngest. I think that's right. It's hard to keep track where you act like an oldest, so oldest daughter. Okay. That makes sense. Just the way you take charge and all that. You Act like you could be the oldest child. Now you said that your cancer treatment was not traditional, so all they did was remove the kidney, but they did not do the radiation or the chemotherapy. Did your mom have traditional cancer treatment? Yes, she did. She had chemotherapy and radiation and as a result of the radiation that she had, she now has a degree of heart failure because the radiation was so intense. The doctor says it kind of cooked her heart, so she's doing all right, but she's never been the same since that does. She had a terrible time with it.

Speaker 2:20:54It sounds like you have a new bond with your mom just dealing with these heart issues together and the cancer.

Speaker 1:21:02We definitely have a lot in common and we've been through a lot together and she's always been there for me, always lifted me up in prayer and being supportive, but they're very busy. They still work at 72 years old. They're still running their own business and I think they're kind of workaholics.

Speaker 2:21:22I think it's admirable that you didn't want to worry your parents too much and you took on your care of your heart yourself. I think it's amazing that you were going through cancer treatment at the same time that your mom was two different kinds of cancer. One in a kidney. I went in the breast and that you guys were on the same path. It's like you were going on a parallel path and now she's dealing with heart problems as well.

Speaker 1:21:49Yes, and it's mild, but like I said, the doctor said it kind of cooked her heart. Her feet swell. She gets tired easy. She doesn't have the stamina that she used to have and sometimes her lips look a little bit blue light mine, but she's a trooper. She's tough. I guess that's where I got it from.

Speaker 2:22:10I think so. Why the baby blues sound collected? I think what I love so much about this cd is that some of the songs were inspired by the patient.

Speaker 4:22:29Many listeners will understand many of the different songs and what they'd been inspired about. Our new album will be available on itunes, Amazon.com, spotify.

Speaker 2:22:39I love the fact that the proceeds from this cd are actually going to help those with congenital heart defects.

Speaker 4:22:46Join the music

Speaker 2:22:47forever.

Speaker 5:22:56You were listening to heart to heart with Emma. If you have a question or comment that you would like to address on our show, please send an email to energy water ski@AtlantaathearttoheartwithAetna.com. That's kind of@hearttoheartwithAna.com. Now back to heart to heart with them.

Speaker 2:23:15Allison, before the break, you were telling me about your complicated medical history with the involvement of cancer and how cancer not only affected you but also affected your mother, and yet I know from my correspondence with you have from talking with you are very optimistic and positive person. In fact, you even described yourself as thriving with Chd, so what does that mean to you?

Speaker 1:23:38It means living the best life I can within my limits, contributing something positive to the world, being able to work a job that I enjoy, have fulfilling relationships and contributing to my community in small but meaningful ways.

Speaker 2:23:53I love how you told me in your bio that you're a teacher, so right away there you say that you're giving back. You're helping people to learn English, but that you do the meals on wheels. Add, now that you say you're an ambassador for the Ach Jay, I think that's amazing. So that's a really busy life to be doing the esl tutoring and volunteering with all these different organizations. Can you tell me what you're most passionate about?

Speaker 1:24:21I'm passionate about helping others. I really enjoy my job or I help people from South Korea learning English as a second language that's very fulfilling. I love working with the elderly. I volunteer with meals on wheels in my area for the last seven years. Oh Wow. And I love working with animals. Last year I began volunteering with Carolina waterfowl rescue feeding baby birds during the spring and summer and caring for the injured song birds. During the fall, you actually have to feed the birds. Why would you ever eat the birds? Some of them get injured, some orphaned. The mother gets killed or the babies fall out of the tree, you know, under the ground and people find them and they bring them in or some of the volunteers go out to get them and then there's a little nursery and they're all in their perspective cages and you get tweezers and you feed them mealworms and oh my goodness, fruit.

Speaker 1:25:20Then it's so cute to see them open up their little mouths and high and mama bird. Yeah, just a lot of fun and some of them don't make it, but most of them do and then they have the bird release and you get to see all of your efforts, the hard work that it is to send them off into the world to catch their own worms and have their own little lives and just. It's fulfilling. It makes you feel good, like you've done something meaningful. Yeah, absolutely. Wow. There's a lot of other things. Birds get injured, owls get hit by car or all kinds of different ways that we can help these animals and it's just a lot of fun. Mainly I've worked with the baby birds and the injured song bird. It's a lot of fun. Wow.

Speaker 2:26:14That sounds fascinating. How did you stumble upon this organization? Because I wouldn't think this is something that everybody knows about.

Speaker 1:26:23Well, it's interesting that you asked that. I live in the country. I live on a little farm myself. We have goats and chickens and guineas and cows, so we did have horses. I was going to meals on wheels one day and I saw this rooster on the side of the road and he looked very bad. All of his feathers were sticking out and he just looked like something was wrong and he was just standing there. I didn't think much about it. When I was coming back from finishing my meals on wheels route, he was still there and I thought something's wrong with this burden. I had seen on facebook the Carolina waterfowl page and some people were liking the page and following it and so I called them and they came out and they rescued the rooster and they named him Elton and he had been.

Speaker 1:27:12I'm not sure what happened, but he was very badly injured. They took him in and they took good care of him and he got better, so then I thought, wow, I would really love to be involved with that organization. And then I saw on facebook where they had the baby birds. I just said, I want to do that, and so I applied and they accepted me and I started doing it. Wow. You saved a rooster. Rooster. Probably would have gotten it. Otherwise it would have a coyote would have gotten him or he just laid there and died. Yeah. Oh my gosh. I know that with this organization, the director, she has gone all over the country rescuing animals that need help. She is very passionate about it and she will go wherever there's an injured animal if it's within her means to do so. Wow.

Speaker 1:28:02And help these animals. She's very passionate about that isn't passionate, but I know you have another passion lately and I know that passion deals with the ACA. Ha. Do you want to tell us a little bit about how you got involved with that organization? I went to the adult congenital heart association conference in Orlando. I think it was 2016. I had never known anyone like myself my whole life, even evident to the age of 45 years old, 44 years old. I never known anyone like me and when I found out about this organization and the conference they were having, I wanted to go. I wanted to meet other people like me. I was able to go and when I got there and I saw all of these people like me and the comradery and just knowing the community, the feeling of, wow, I'm not alone.

Speaker 1:28:57Look at these people. They're like me. They look great, they're thriving, they're doing wonderful and I learned so much and it was then I just knew I wanted to be a part of that. I felt so inspired and uplifted and encouraged and I wanted to share that. I wanted to be a part of that. I learned about the ambassador program. I applied to be an ambassador. I went through the interview process and I was accepted. I'm very happy to be a part of that organization. I also met and developed a close relationship with my first heart sister at that conference and that relationship has been so rewarding and helpful to me. It's really hard to put into words except for to say I don't feel so alone with chd anymore. Right. Do you have a heart sister? Yes. Do you belong to the facebook group? Zipper sisters? Yes, I do. I think that's an awesome group. It is amazing.

Speaker 2:30:01Oh my gosh. I have met so many zipper sisters conference, Lsa right next to each other and not even known. It is like I was mostly sitting next to Rita scoggins. Rita and I are longtime friends that. Yes, I was at that conference. It was inspiring. They had a lot of great speakers. I can't recommend highly enough going to the ach conferences because I really do think there's so much value in us getting to be with other parents, other heart warriors, other spouses. I mean the conference is for everyone and they had a lot of doctors at the last conference, didn't you think?

Speaker 1:30:40Yes. It was very educational, very informative, and I got to meet other people with Eisenmenger's. Our group was small, but that's where I met my heart sister. Awesome. Also, when I was there, I shared a dinner table with a lady who also went on to become an ambassador and we were in the ambassador program together at the same time and so we were able to reconnect during that and we recently worked on a project with the education affinity group building a support team, and that's going to be published, upcoming and placed on the website, Echa heart.org.

Speaker 2:31:18That is awesome. Yeah. Well, what advice do you have for others so that they can feel they're thriving with their chd? Just like you are Allison,

Speaker 1:31:29I encourage folks to develop good communication with your heart. Doctor. Make sure you keep your appointments, be your own best advocate, educate yourself about your condition. Don't be afraid to ask your doctors questions if you don't understand something about your situation. Knowledge is so very important in situations like ours. If I hadn't gone to my appointments, the cancer would have gone undetected and I may not be here. I also don't leave your care up to your doctors alone. You need to take an active role in your care. You need to be proactive in your care. Don't be afraid to take risks. Do things that you think it maybe you can't do. Push yourself within reason to obtain goals or have experiences that maybe you think you can't. Don't put limits on yourself. Instead of thinking about all the things that you can't do, you may be amazed at what you can do. Yeah, that's true. Definitely listen to your body, but gently push on toward those things that may seem unattainable and you will be amazed how fulfilling your life can be.

Speaker 2:32:36I love it. I love it. So much positive advice, such a great outlook on life. Thank you so much for coming on today's program, allison, and for sharing so much wisdom with this. Thank you for having me. It's been a wonderful opportunity. Oh, I'm so glad we got a chance to meet and who knows if we really did meet in Orlando, I think we would have remembered each other, but next time when we go to the conference, we'll have to look for each other so I can give you a hug. Absolutely. I would love that. Well, friends that does conclude this episode of heart to heart with Anna for dig, find us on Iheartradio and subscribe and remember my friends. You are not alone.

Speaker 5:33:18Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defects. Heart to heart with Anna, with your host. Data can be heard every Tuesday at 12 noon eastern time. The.

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