Marissa: Welcome to the 12 Months, 12 Journeys, 12 Lessons podcast. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guests. My name is Marissa Christina from www.Abledis.com. Today’s guest is a lovely, spirited individual. Kim was born and raised on a tiny island in the Pacific Ocean. She married her high school sweetheart in 2004 and entered the world of motherhood the next year.
Kim’s greatest blessing is her family. She parents two boys and enjoys the challenges that come with motherhood. She’s trying to find balance living with a rare liver disease and juggling life endeavors. She started the blog, Hope Whispers, where she documents living with a rare liver disease. It’s with great pleasure that I welcome to the show, Mrs. February, aka Kim. Welcome, Kim.
Kim: Thank you.
Marissa: This month, February, 12-12-12 Project is featuring a rare liver disease known as Budd-Chiari Syndrome. Kim is living with Budd-Chiari. Kim, can you break down for the listener what Budd-Chiari Syndrome is?
Kim: Sure. Pretty much I have a blood clot in the vein that leads out of my liver into my heart and it’s causing the blood to back up into my liver and actually into my spleen.
Marissa: Let’s venture back into that initial diagnosis. Were there tests or symptoms that led up to even the diagnosis of Budd-Chiari?
Kim: Actually, I was in for my ultrasound when I was pregnant with my son. I was 18 weeks at the time and I had gone in to find out if I was having a boy or a girl, and they noted that my liver was enlarged. The technician kind of left the room real quick and came back with the doctor who explained what was going on and that they had saw that my liver was enlarged. So, I found out I was having a boy and I found out I had a big liver too.
Marissa: Wow. What an impact right at this same time. You’re going in for something happy and then you’re caught off guard with the condition.
Marissa: Let me ask you this: Budd-Chiari, being rare in itself, I had a little bit of difficulty finding much on the condition, so I’m hoping you can educate us. Is the condition a painful condition?
Kim: It’s not necessarily painful. It’s very uncomfortable. My liver swelled up. My spleen is swollen. Every now and then you get those pains. It’s upper-right abdomen pains, but it’s not… I don’t know how you would explain it.
Marissa: It’s like a fatigue, like a tiring…
Kim: Yeah. Fatigue is a hard thing to deal with, with liver disease. That seems to be my biggest, biggest problem.
Marissa: One of the things that I noticed is that, obviously because of advanced liver disease, there are complications that come about. Reading through your blog I did see this word called hepatic encephalopathy, also known as HE. Can you explain what that is that you were mentioning throughout the blog and why that’s happening?
Kim: Yeah. Pretty much my liver isn’t working properly, so the toxins that usually are filtered out through the liver aren’t being filtered and are being distributed into my brain.
Kim: So, that causes a lot of problems for me with memory. I have what the doctors call episodes. There was a time walking through the grocery store where, all of a sudden, I didn’t remember where I was or who I was or who I was with.
Marissa: So, something like this with the HE, are you not allowed to really be by yourself or drive?
Kim: Yeah. Driving is completely off the list. They don’t really tell me that I have to not be left alone, but my family won’t leave me alone once they figured out what was going on.
Marissa: Makes sense. So, a normal work flow or work days are really kind of out of the question right now because of the HE?
Kim: Yeah. That’s pretty much what got me disability. I couldn’t work because there’s so much confusion and time lost that there was no way to work, and the medication that I have to take for it also makes working impossible.
Marissa: I can imagine. Kim, it’s kind of interesting because a lot of times with chronic illnesses, when we learn about these conditions we flood ourselves and run to the Internet. Did you find yourself being drawn to the Internet trying to look for answers when this happened to you?
Kim: I did, and it was hard because I went on looking, and you looked too, so you know there’s nothing there.
Marissa: To the listener, trust us when we do say that it is very limited. It was a pretty interesting experience, so I can only imagine what Kim went through when she first started to look.
Kim: I looked and I found one other person who had written, and all of a sudden the blogs posts stopped, and I thought, “Please tell me they’re okay.” I could not imagine.
Marissa: Yikes. So that sort of led you almost into your own blog. You have a really beautiful blog. It’s called Hope Whispers. Talk a little bit about what the blog, Hope Whispers, means for you and a little bit about why you started it.
Kim: My family at the time was all spread out and everybody wanted to know what was going on, who said what and what I had to do next. I started sending out e-mails. I wanted to find a place that someone had written about how their life was with this, and I didn’t find anything. So I decided I would start my own and maybe I would find people that way.
Marissa: That’s great. So, the word Hope rang to you and you thought, “Hey, let me go with Hope Whispers”?
Kim: It was a quote that said, “When the world says give up hope, hope whispers, try it one more time” and that’s kind of how I was feeling. I felt like, I can’t believe that out of all the people – 100,000 – this is what I got.
Marissa: Yeah, Kim. What’s the statistic? Is it one in 100,000 people?
Kim: One in 100,000.
Marissa: Goodness. So, they are not lying when they say the word, “rare”.
Kim: Yeah. It’s not as rare as others, but I had never, ever heard of it.
Marissa: I had an opportunity to go through the blog and really read through it and spend time with it. In the blog you highlight your beautiful family. You have two wonderful boys and a great husband, and your boys are really active. Can you talk a little bit to the listener about what it’s like parenting with a chronic illness?
Kim: Any Mom will tell you that it’s absolutely exhausting and it makes it harder. Right after I had Alex, I was beat and my other son was three. Anthony, he was three, and he was on the go. We were always on the go doing something fun – crafts, coloring, playing outside. It really affected him a lot when I couldn’t get out of bed and I couldn’t do this or do that.
He let me know that he saw this, and I decided I can’t not be a mom. I had to tell myself “You have to keep going. Your kids still need a mom. Your kids need to play and do all those things.” That’s what has pushed me not to just let myself go.
Marissa: It’s kind of interesting because you said even though he’s three, he’s sort of aware. The boys, technically, they are old enough to be aware of what’s going on. Have you really had talks with them and tried to explain to them what’s happening to mom, or is it sort of something that you’re not really talking about right now or waiting to address at a later time?
Kim: I have been pretty open with Anthony about it from the day I found out that I was sick. I had to take these injections that I had to do twice a day, and I would go upstairs when everyone was busy, I would do my injection, and I was in the middle of an injection and the door swung open and there’s my three-year old staring at me.
Marissa: Oh, yikes.
Kim: And he asked, “Are you okay?” I said, “Yeah, I’m okay.” And he said, “What are you doing?” I’m like, “You need to get out of here. You can’t be in here.” He switched. He wanted to make sure I was okay. He asked me if I needed a band aid. That’s his personality.
He’s been really good. I never hide anything from him. He knows that I’m on the liver transplant list. He knows what a liver looks like. He’s the one that’s been really good. He’s always on me about drinking water. But, Alex, he just turned three and he doesn’t really know. Sometimes he’ll jump on me and I’ll tell him, “Mommy can’t play, I can’t do this,” and he doesn’t understand.
Marissa: You mentioned something real quickly and it wasn’t very light. You said transplant list, so let’s talk about that, Kim. So, currently for the listener you are on a transplant list, correct?
Kim: I am. I was listed May 25, 2010.
Marissa: Kim, May 25, 2010, was placed on the transplant list. Let’s talk a little bit about the transplant list. Is that the only treatment option for you at this time is being on the transplant list?
Kim: That’s the only option they’re giving to me right now. I’m sure you read about a living donor.
Marissa: Yes, but if you could explain for the listener the difference between the living donor and a cadaver donor, or what it is you would need and why.
Kim: I’m going to need a cadaver donor, which would be someone who has already passed away because the live donor would only give me part of their liver, but I need as well, not just the liver itself, but the vein that connects the liver to the heart. So, I would need that and obviously if someone’s living, they’re still going to need that too. So, I can’t have that. I have to wait until the time comes.
Marissa: So, the cadaver list, that means that you get placed on this transplant list. Is there a national list out there for those that don’t know anything about transplant lists?
Kim: There’s UNOS. I can’t even think of what it stands for right now.
Marissa: I want to say I know, but at the top of my head I can’t say.
Kim: Okay. United Network for Organ Sharing.
Marissa: There we go.
Kim: I’ve got to have my book with me for everything.
Marissa: I was like, “Wait! Let me flip to this page.”
Kim: There’s UNOS list and you have to do a bunch of tests and if you pass everything, then they’re going to okay you for transplant and you get placed on the list.
Marissa: You have a transplant team and then the team runs you through a battery of tests?
Kim: Yes. There was a whole bunch of tests. I had my heart checked out. I had stress tests, EKG’s, X-rays, MRI’s, ultrasounds, liver dopplers, every type of blood work you can imagine.
Marissa: There’s this team and the team put you through a battery of tests, and then at that time they make a decision to put you on the list?
Kim: Yes. I had to do a psych evaluation to make sure I had enough home support. Obviously they ask if you’re doing drugs or drinking, stuff like that. They ask who is your main support, who is going to be with you through everything. They’re pretty thorough.
Marissa: This UNOS, one of the things I saw in there is that it was divided, within the U.S., into regions. Is that sort of how it works? You’re in a certain region or area?
Kim: Yes. I am in Region Four, which is Texas and I believe Oklahoma.
Marissa: And then for the listener, I think it’s important to know because this pretty much shocked me is that there is something called a MELD scoring system, and maybe Kim can explain a little bit what MELD is and how that relates to being on UNOS.
Kim: Sure. The MELD score is how they list everybody on there to decide who is at the top of the list and who at the bottom of the list. It goes by your INR, your creatinine, and your bilirubin. So, depending on high you are… I think it goes from 14 to 40.
Marissa: Yeah, I think that’s right.
Kim: Right now I’m sitting… Well no actually, I’m a little lower now because –
Marissa: I’ll take it back. It goes from 6 to 40.
Kim: Thank you, 6-40. For me it’s a little different because I’m on blood thinners, so that affects the INR part. Right now my kidneys are functioning well and my gallbladder. I don’t have any problems with any of that. My INR – I’m on blood thinners so if my blood is running too thin, it jumps me up to about an 18, 19. But without the blood thinners, my INR is really low, and so last time I got checked I was testing – my blood was thick so I jumped under 10.
Marissa: Oh, goodness. Does that mean that your placement on the list goes down?
Kim: I actually know a few people who are way up there and still haven’t had their transplant.
Marissa: A lot of what I’m hearing now is that it’s sort of like you are in a holding pattern. You’re sick but the numbers aren’t really reflecting that you really need the transplant right now, but yet, you really need the transplant. What does it feel like, Kim, to be on that transplant list?
Kim: It’s frustrating, because I want to be better already. I want to be able to enjoy now to the fullest. I’ve got my kids and they keep me busy, but I want to be able to keep up with them and not have to worry about, “Okay I’ve got to stop and do this,” or “I can’t run with you,” or “I have to take my medicine,” or “I don’t feel good enough to go out.: It’s really frustrating, but at the same time, I don’t want to be sick either. It’s…I don’t know the word.
Marissa: Do you spend a lot of your days with the “what ifs” or do you just try to keep your mind focused on the boys or do you go into that “what if” type of moments often?
Kim: I do. My doctors say I have a funny way of being afraid, because I’m scared out of my mind, but I laugh about it because if I don’t laugh, I’ll cry and I don’t like to cry. We joke, but “what if” is always in the back of my head. There’s no escaping that.
Marissa: I want the listener to really think about what Kim is saying because I think this is a perfect time to express to you guys how important organ donation is. I had an opportunity to read a really fantastic book about liver transplantation, and in the book they mention that when the demand for liver is high and the availability of liver donation is low, a person must have that higher MELD score to be at the top of the list and the MELD score needed to undergo a transplant in these types of regions can range from 30 to 35, and in areas that have a large number of liver donors, liver transplantations can be done to those with MELD scores in the range of 18 to 20.
I hope you guys can see why donation really becomes critical, because when you make the decision to donate, you’re really saving lives. Kim, how important is it to you to spread knowledge about organ donation?
Kim: It’s important. I never thought about it growing up. I lived sort of a sheltered life out in the middle of nowhere, but I never saw much about it on TV, on the news. You don’t hear about it a lot. So, when they told me, “You are going to need a liver transplant,” I was like “What? How could I need this?”
It’s insane because there are so many people – I think over 112,000 right now – that are waiting, and in my region alone I think there’s 2,000 waiting on the liver list. The numbers are crazy. I don’t know how someone could not want to give one last gift before they go.
Marissa: I think it’s really important that you’re mentioning that, because for me just from my own research, I was sort of clueless. Like Kim said, I just was unaware. I just didn’t know until I started reading all of this information. Then it was sort of like a no-brainer for me. I just want to www.OrganDonor.gov. You guys can check out www.OrganDonor.gov.
I just went there and I read some simple information. It took me to my region in California and basically I was able to go on and simply – I think it took me under five minutes to go in it and sign up.
It just makes you feel like you’re doing a part, especially in conditions that you feel like there’s not much control. This is something you can take control of and you can help. Help Kim and help others. It would just really mean a lot for us, to both of us, to make sure that you’re aware that there is something that you can do.
Kim: I think it’s 18 people that die every day waiting for an organ. 18 people die. When you donate, you save eight lives and enhance the lives of hundreds. Not hundreds, but many others, because you can donate tissue, blood, your corneas…
Marissa: Yeah. In Kim’s situation, depending on her MELD score or how low it goes, it won’t be a matter of having to be concerned about the MELD score. She’ll just know that there are enough organs out there that will fit her criteria and she can get a transplant. That would be great.
Kim, now that you’ve had a chance, obviously through the blog and other things, you’ve opened up about your story and you’re sharing your life living with liver disease, what do you feel for the listener is the lesson? Is there something out there that you want to share with someone who might be going through this, or just something you want to give to the listener?
Kim: Not to take anything for granted. If you asked me ten years ago, I wouldn’t have thought… Not that it wasn’t as important to do things that you wanted to do, to tell people that you love them. It’s so simple, but it gets skipped over a lot. I don’t know how to explain it. My husband, he’s going to kill me.
Marissa: It’s okay. He won’t know.
Kim: We’ll be in the grocery store and he’ll go his way and I go my way and I’ll call him and I’ll be like, “Where are you?” He says, “I’m over here.” I’ll say, “Okay. Love you.” He’s like, “Really? You have to say I love you and I’m going to see you in a minute?” And I will tell him “Yes.” I say “I love you” constantly on the phone. It’s just something that maybe I didn’t do before. Now, I realize what if tomorrow is the day and I didn’t say I love you?
Marissa: Kim, you’re the best. You’re the best woman. I thank you so much for opening up and sharing your story of what it’s like living with Budd-Chiari Syndrome. To me, you’re always going to have a special place in my heart and I’m sure the listeners are going to fall in love with you like I have.
If you want to learn more about Kim, please check out her blog, Hope Whispers, at www.Kmunozbcs.blogspot.com. To learn more about liver disease, please visit the American Liver Foundation. Thank you so much, Kim.
Kim: Thank you.
Marissa: Much love to the listener. Bye-bye.