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Apr 8, 2018

Gina Rapacz is a 48 year old mother of 2 teenage daughters living in the Chicago suburbs.  She recently had a liver transplant after hers failed and she lingered on the transplant list in Chicago for over a year.  Her transplant was completed at Duke Medical Center in Durham, NC. She is now on her way to a healthier life with a new liver. See Transcript of this show below.

Gina, her mom & Dr Drew Barbas her transplant surgeon


Lita: [00:00:16] Hello and welcome to podcast DX. This show that brings you interviews with people just like you whose lives were forever changed by a diagnosis. [00:00:24][8.7]

Lita: [00:00:26] I'm Lita. [00:00:26][0.2]

Ron: [00:00:27] I'm Ron. [00:00:28][0.2]

Jean: [00:00:28] And I'm Jean Marie. [00:00:28][0.6]

Lita: [00:00:29] Collectively we are the hosts of podcast d x. This podcast is not intended to be a substitute for professional medical advice diagnosis or treatment. Always ask the advice of your physician or other qualified health care provider for any questions you may have regarding a medical condition or treatment and before undertaking any new health care regimen. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. [00:01:03][33.5]

Ron: [00:01:05] On today's show we will be interviewing Gina a liver transplant recipient. [00:01:09][3.8]

Jean: [00:01:10] Gina is a 48 year old from a Chicago suburb, where she lives with her husband two teenage daughters Nikki Sarah and their adorable puppy. Coco. [00:01:18][8.1]

Lita: [00:01:19] Hi Gina thank you for joining us today. [00:01:21][2.0]

Gina: [00:01:22] Hello. Thank you for having me. [00:01:24][1.2]

Ron: [00:01:25] I understand it's been almost six months since you had a liver transplant. Yes I was transplanted September 30th 2017. [00:01:32][6.7]

Gina: [00:01:33] In North Carolina at Duke University Hospital. [00:01:35][1.6]

Lita: [00:01:36] Well you look great. [00:01:37][0.6]

Gina: [00:01:38] Thanks. I actually I feel great. This is the best I've ever felt actually. For. A long long time. [00:01:43][5.4]

Lita: [00:01:43] . Gina, what symptoms first led you to the doctor. [00:01:48][4.8]

Gina: [00:01:49] Well. As far back as I can remember 2016 I had a really bad swollen. Ankles from water retention. Very tired. I was always cold. The doctors were. Thinking I had cancer. Which. Led my disease to. Worsen. As they were testing me for cancer. But it was not. [00:02:11][21.6]

Jean: [00:02:13] How long did it actually take before you got. A correct diagnosis? [00:02:15][2.1]

Gina: [00:02:17] My symptoms were bothering me for at least five months before they diagnosed my liver problem. [00:02:21][4.4]

Ron: [00:02:24] Gina, Can you recall any specific symptoms that really stood out. [00:02:27][3.2]

Gina: [00:02:28] Yes of course. My stomach. I look like I was nine months pregnant. And the build up of ascites is a toxic fluid. That forms in your stomach. Making it. Enlarged. My eyes were no longer clear they were. Foggy. and my skin was chapped & itchy. Always thirsty. Almost like you want to stick your head in the swimming pool. I lost my appetite. I had dry heaves almost throwing up but not quite. Always had leg cramps. My calves were so painful they'd wake me up at night. I would try standing up. They were. Very. Painfully twitching. And the muscles would cramp up. You. It's like a charlie horse times 10. Very painful. Terrible terrible. [00:03:13][45.0]

Lita: [00:03:14] Were there any embarrassing symptoms that you had? [00:03:17][2.5]

Gina: [00:03:18] Yes I actually would. I, I had. A bad case of diarrhea all day I would go maybe eight to 10 times a day never knowing when it was an attack. But usually when I was at Target or Wal-Mart shopping. And I would have to use a public bathroom for no reason at all my nose would start bleeding. And. It was on a daily basis. [00:03:43][24.7]

Jean: [00:03:44] Did anything help relieve any symptoms. [00:03:46][1.3]

Gina: [00:03:47] Well for the chills I would layer up. I would layer clothes use the electric blanket at night. wear socks, which, I am not a socks person. I also spend time in the sun which helped. I never used air conditioning or a fan never wanted to cause a breeze my way because the chills. You can never. you, that feeling was intense. [00:04:07][20.3]

Ron: [00:04:10] You mentioned that you're always thirsty. How do you deal with the thirst. Even though you're thirsty all the time. [00:04:17][6.7]

Gina: [00:04:18] The doctor puts you on a water intake a day. So I was on a two liter a day intake. Of liquid. After. My water intake. I would move over to a frozen. freezy pop. Like a Popsicle. Yeah because a popsicle had flavor to it and it would break up the monotonous taste of the water. Also. They give you a little sponge like. Device at the doctor's office where you dip it in water. And you kind of stuff the water on this little sponge. And that helped. [00:04:48][30.6]

Lita: [00:04:51] Did anything help with the swelling that you had? [00:04:54][3.0]

Lita: [00:04:55] Your stomach was swollen. [00:04:56][0.6]

Gina: [00:04:57] Yes actually. There's a procedure they call Paracentesis. [00:04:59][2.6]

Lita: [00:05:00] Wait a minute, Paracent- whatis? [00:05:01][0.3]

Gina: [00:05:02] Paracentesis. you're in the hospital outpatient. Procedure where they go in. To your stomach with a needle like, device. And they hook up the hose, to a JAR, glass jar liters and the fluid is flushed out of your stomach. Out of your abdomen. Very painful. But. When you leave. After that. Procedure. You're about five to six liters. Of fluid. Down. Where the relief is amazing. [00:05:35][32.5]

Lita: [00:05:36] So besides the Paracentesis. Was there anything else that you. Could do that would help the swelling. [00:05:41][5.4]

Gina: [00:05:43] Yes, you could watch what you eat. Restricted salt diet and limiting my fluid intake helped the swelling. At night we tried to get comfortable by putting a wedge under my legs. To help with the cramping. When the cramping got real bad. I tried to walk it off. As early as I could. Sometimes when you check the sodium levels of the food that you're eating you'd be shocked that a lot of things have sodium. So. You do have to read labels and watch your sodium intake because that will cause fluid to accumulate in your stomach. Also I was a member at a health club that I had access to a Hot water Jacuzzi. Which helped. My legs in the cramping and feel less tense. I suggest that for anybody. And also. I self meditate. Myself out of pain. And that helped me get through a lot of my symptoms. [00:06:37][54.2]

Lita: [00:06:40] Well that's really great. That's probably a good suggestion for anybody. Did you know what to expect when your doctors. Actually inform you that you have cirrhosis and now end stage liver disease? [00:06:53][13.2]

Gina: [00:06:54] I didn't even know really a part of cirrhosis of the liver but I never really knew what. It. Was or what it untailed. I assumed it was kind of like if somebody had a heart attack. You go into the emergency room. You get back to a goal you undergo surgery. And. That's the end of it. I do not know. What end stage liver meant. But. It was. They gave me weeks to live. And that was scary because you're you don't know what to expect. Day to day. Now 48 years old and this, all the time this, and the rest of you. Yes very much very and very sudden. [00:07:37][43.1]

Ron: [00:07:39] I understand that the hospital provided a number of classes to help prepare you for life with a new liver? [00:07:44][4.8]

Gina: [00:07:44] Yes. You explained. Hospitals they go over everything that you need to do to prepare yourself before transplant and what you need to do. It was so it was terrible. At the time you're so sick that you can't even concentrate on what they're telling you. My caregiver was with me thank God because she took notes for me. During these meetings it's like a three day process where you meet different actors and different people on the team. Transplant team. It's very consuming. The information is very hard to understand because you're so sickly at the time. The toxins built up in my. In my brain. That. The liver. Isn't processing. And I became very confused and even I became combative. [00:08:33][48.9]

Jean: [00:08:35] Did you realize that you were confused or combative?. [00:08:36][1.5]

Gina: [00:08:37] No really. Well. When the nurse came in to check on me she asked me a couple of questions like What was my name and who was the president. What state do I live in. I answered. "Gina" To all the answers to all the questions. Yes. And. She knew from being a liver nurse she knew that was a symptom of toxins build up. In the brain. So immediately they put me to the emergency room and took care of me and they had to flush the toxins from my abdomen. [00:09:10][32.7]

Lita: [00:09:12] Dangerous dangerous. You're from Chicago. But your transplant was in North Carolina. Why is that? [00:09:20][7.8]

Gina: [00:09:20] Yes. Well I heard. They had some regions have faster results and you could register in more than one region. My caregiver told me about North Carolina because I was. Actually listed in Illinois where I live. For over a year. I only university. When she told me. About North Carolina and the turnaround in the. Past transplants. Turn around that they have their high. Low down and got on their list. And. High on their list. Actually in August of 2017 and I was transplanted. September 30th twenty seventeen. [00:09:55][34.6]

Ron: [00:09:57] Definitely a lot there. What would you say was the worst part of this process. [00:10:02][5.1]

Gina: [00:10:04] The worst part was waiting. Waiting. To. You know you don't know when you're going to get the phone call for the transplant. Getting sicker by the day. Ascities... The fluid retention in my stomach. Hurting. Constant swelling bloating. My legs were starting to give out because they were so swollen felt like my skin was going to rip open. There was nothing that they were prescribing me at that point that was helping me to get any kind of comfort. My sleep was lost. It was painful. Actually to even take a deep breath. Because the fluid was so. There was so much fluid in my stomach it was pushing the rest of my organs up. Through. My chest. And. Cause it Hard to breathe. [00:10:48][44.4]

Jean: [00:10:49] It's sounds Awful. Did anything at all help with the swelling? [00:10:52][2.6]

Gina: [00:10:52] . Well doctors told me to wear compression socks. Trying to stay positive thinking and moving about. Staying busy with my everyday life. The swelling in my stomach like I said before was released. Through. Paracentesis. That was the draining of the fluid. At the hospital. [00:11:12][20.0]

Lita: [00:11:13] Sure. How did you feel when you first got that call saying. You know. We have a liver waiting for you. Was that was a surprise? Especially, you say it was only a month after you signed up over North Carolina! How did you how did that make you feel? [00:11:29][15.8]

Gina: [00:11:30] Well I was shocked when I got the call I was actually at the store picking up. A prescription. And they told me to go home pack a bag and go to the hospital right away that they had a perfect liver. Well. I was excited. I was sad. I got very emotional I think every emotion went through me. When I got to the hospital. Yes I was excited but I had to wait for about. 10 hours before they actually operated on me. So I had time. For this information to sink in. Yeah. But it was at first it was a shock and I was. Like I went through every emotion. [00:12:05][35.4]

Ron: [00:12:07] I understand you were released from the hospital sooner than some people, what do you think, what do you think about that? What aided you in your recovery? [00:12:16][9.4]

Gina: [00:12:18] Well. I listened to my doctors I did everything they told me. Walking. Well actually let me back up. I'm sorry. I did. Exercise a lot before my transplant even though I was very sick. I had to try to build up muscle. They told me that after her transplant you would lose a lot of muscle. And I'm happy that I listened in that way because they after transplant you have to lock. And build up strength. But I'm glad that I was physically fit free for transplant. That makes sense. Also. I'm sorry but also eating healthy. As much as you can. You have to. Know a lot of protein low sodium a chicken and peanut butter nut protein bars protein shakes anything with high protein. That would build up muscle mass. [00:13:11][52.9]

Jean: [00:13:12] Did you to take a lot of medication. [00:13:13][1.3]

Gina: [00:13:15] After transplant? Yes I was on 40 pills a day, and it was four times a day. So yes when they, when the pharmacy rep brought in the pill box, the day before I got discharged, I said it looked like a fishing tackle box! (laughter from co-hosts) I thought to myself there's no way I would ever understand this! I'm not a pill person. And I just, I didn't think I could do it. But as time went on I, now fill up my pillbox blindfolded. (more laughter from co-hosts) Actually, I'm down to 16 pills a day so there is a big difference. [00:13:53][38.2]

Ron: [00:13:54] Yeah. That's a lot to swallow. (co-hosts and guest laugh) Has anything changed since your procedure? [00:14:04][9.5]

Gina: [00:14:05] Yes I mean I learned that I have to stay very active, walking is important. I wasn't able to lift anything five pounds or heavier. But now that I am six months out I am able to lift 25 pounds and more. I mean. I have to watch what I do because. They don't want me to get a hernia where the incision is. Absolutely there's no smoking no alcohol even sun exposure is considered high risk because of the medicine that I'm on can cause skin cancer. [00:14:37][32.4]

Jean: [00:14:38] And just to keep an eye on your vitals. [00:14:41][2.1]

Gina: [00:14:41] Yes every day I have to check my blood sugar because of the medicine intake could raise my blood sugar. I have to check my temperature. Make sure there's no type of fever. Virus going on I maintain a healthy diet. And again I do high protein and low sodium. [00:14:58][17.1]

Jean: [00:14:59] Were there any rules, things that you cannot eat? Or is there anything that interferes with your medication? [00:15:05][5.5]

Gina: [00:15:06] Yeah. The grapefruit you're not allowed to have any grapefruit or any product that has grapefruit in it. I was shocked to see that I I do. I used to use minced garlic in a jar and I found out that there's grapefruit juice in there some kind of preservative. And. Yeah. I was shocked. So you have to read every label. You have to make sure. The product is dated and if you can't read the day don't buy it don't chance it. If you. Touch something at the grocery store it is supposed to be cold and it's not. Don't buy it. Also. I would always use after transplant right after transplant when I was going to the stores or restaurants or out in the public I would wear face masks and I would bring wipes and wipe down everything handles of the grocery cart. Even menus at the restaurant. [00:15:53][47.0]

Jean: [00:15:55] That's probably a good tip for everybody. Did anything make a recovery. Recovery period easier? [00:16:01][5.5]

Gina: [00:16:01] While I was recovering at my house. I get it. Very great caregivers taking care of me. But also when I was by myself like taking a shower. I did use a grab bar in the shower. I did use the handlebars on the toilet seat. To get up and down because you are still sore. Compression sox would help my legs from getting to swollen. Squatty-Potty would help, so you don't have to, I'm sorry but, push while you go to the bathroom. You don't want anything. You don't want any tension around that. Incision. I also, like I said, the antibacterial wipes are very good. Use them Lysol spray. Wipe down everything. Just be cautious be careful. And you don't want to touch any germs. If you can't if you can rent a lift chair. [00:16:51][49.6]

Lita: [00:16:53] Right. All of those products that you recommended like the squatty- potty and the handlebars for the toilet area. And the grab bars for the shower will be listed. On our Web site. For purchase. For anyone that's interested. And. The lady. Ready. Them back. Yes we'll be getting these products. From the Amazon Web site directly for you to show that you don't have to search too hard for these helpful aspects. You know there was good information. What would you. Like our audience to know about the importance of being an organ donor. [00:17:30][36.5]

Gina: [00:17:31] Well I personally was never an organ donor myself but now I am. On Through. totally unknown it. I think everybody should be a donor if anything of ours can help. Two three. More people. I don't. Being a donor. I say. Definitely do it. [00:17:51][19.7]

Ron: [00:17:52] That is an amazing story. Any other advice for the listeners out there. [00:17:57][5.1]

Gina: [00:17:58] Oh yes I do actually. When you go to the doctor's office. Make sure that you. Tell them. Exactly. Your symptoms like if you. If you're feeling like you have a headache every other day or a sore throat once in a while just tell them everything that you feel or tell them. You are a drinker or tell them that you do diet pills or. Just. Be honest with them you're there for a reason you they're not going to judge you. And. Possibly they'll. Test you. And they'll before a disease. Occurs. They can help you. And treat you. [00:18:31][33.1]

Jean: [00:18:31] That's great Gina, Thank you so much. Oh I want to thank you, on behalf of the podcast staff, and our listeners. And we really appreciate you taking the time today to speak with us. [00:18:41][9.9]

Lita: [00:18:42] If you have any questions or comments related to today's show you can contact us at podcast D X at Yahoo dot com through our Web site where you can link to our Facebook page and also see more information as we build our site. Please go to podcast D X dot com. [00:19:01][19.3]

Ron: [00:19:02] And if You have a moment. Please give us a five star review on the ITunes Podcast App.. [00:19:02][0.0]