Jennifer shares her experiences as the donor and receiver of organ transplantation
Jennifer’s experience with organ transplantation comes full circle from agreeing to donate a loved ones organs to being the recipient of part of her husband’s liver through a living donor transplant. She shares her struggles with end-stage autoimmune liver disease and caring for her young son, and how her husband, family and community supported her through the worst of autoimmune liver disease.
Transcript
Jennifer 00:00 My husband was going to pass away whether I donated his organs or not. So that really is the silver lining, the good. Just about the only good that can come from it. So, you know, it was just it was the only thing to do. And it really I think it helped the grieving process for me.
PSC Mami- Monika 00:21 Welcome to PSC Mami where we share stories at the intersection of PSC and parenthood, PSC or primary sclerosing cholangitis, is an autoimmune disease where the immune system gets the wrong message to attack its own bile ducts. Over time, the inflammation can leave the bile ducts scarred and blocked, which could eventually shut down the liver, which surprise is in charge of over 300 functions in the human body. To be diagnosed with this rare, incurable, unpredictable disease can rewrite anyone's life journey including their vision and experience of parenthood.
PSC Mami- Monika 00:59 A reminder that all stories and information shared our personal experiences and options and should not be used as the basis to treat yourself or others. Please consult your personal medical team.
PSC Mami- Monika 01:13 An invitation to you. Yes, you! Whether you're a PSCer or the parent of a PSCer. What's your story at the intersection of PSC and parenthood. Has PSC made becoming a parent impossible? more challenging? Or was it in an eventful journey? I believe that our stories are connections that we can make across geography and time as we all figure out what PSC means to us. Every story has the power to make someone or many people feel less alone. Your story has that power. Yes, your story. Contact me to talk about the process to be interviewed. And yes, you hold control over your story and how you would like it to be shared. You can reach me by email pscmami@gmail.com or go to our podcast website pscmami.com. I look forward to hearing from you. Now. Let's get to today's interview.
PSC Mami- Monika 02:20 Today we are talking to Jen. She is coming to us from southeast Kansas where she lives with her husband and son. Welcome.
Jennifer 02:31 Hello. Thank you.
PSC Mami- Monika 02:33 Jen, tell us a little bit about your PSC story.
Jennifer 02:36 My PSC was discovered by accident. I had started seeing a new physician, and he did bloodwork on all of his new patients. And in that blood work it came back with my liver enzymes were sky high. High enough though, without question. he said we need to look into this further. I kind of feel like he suspected PSC or PBC from the beginning because he acted, like I said, he took quick action about it. So after doing an ultrasound, and then ended up having my gallbladder out. They didn't just automatically take it out because of suspected liver disease, but I did have a polyp in my gallbladder that was almost big enough for them to be concerned about. They said we want to go and biopsy your liver too. So I had a liver biopsy, and then ended up following up with a with an ERCP to confirm diagnosis of having PSC. That was my original diagnosis. And the one that we worked with for most of the time. This was back in 2012.
So by 2014, I had just married my husband now. And we wanted to have kids, even though when we met I was 30, he was 37, neither of us had had kids yet. It was second marriage for both. And we got married in August of 2014. And like I said, talked about kids right away. And we discussed my disease trying to figure out you know, are we worried about passing this on to a child? Can we pass this on to a child can we do it on our own? Because at that time in the first two years, I really wasn't that sick? I was tired. I started taking naps every day at 25. And like I said this was five years later when I was about 30. But that was that was it. I didn't have any itching. I didn't I looked tan but my eyes weren't yellow, overall I didn't look jaundice. But we had attended our first PSC Partners conference and had talked to a range of people at different stages of the disease. And so we had seen you know, some of the worst cases where people were all in it but we had also seen cases that were like me were really it was just elevated labs and they still felt pretty good. So, and we had heard so many different stories that we, we already felt pretty comfortable in the fact that who knows what's going to happen? After discussing it. You know, I told him I said, Do I think it's gonna be easy? No, do I think we're gonna need our village? With us? I said, Yes. So if we think we've got the support of my parents, your parents, I think we're gonna need all of them. You know, we decided that the risks, we thought the risks were low that we would pass it on. And ultimately, I thought about what I had been through so far. And I thought, everything I've been through has made me tougher. And if by some freak chance, we do pass this on to a child, you know, we'll, we'll deal with it.
But I've always tended to live my life by odds, and I thought the odds were in our favor. So we went for it. It did cause at early birth, which I carried him for seven months, felt great the first five months, last two months, I thought I was dying. And I had really bad itching it it definitely-It had already started the pruritis had already started. It definitely got a lot worse while I was pregnant. And I think my body could support both of us for the first five months. And then I think after that it was done, and it was only going to support one of us, which thankfully was him. Then at seven months, I think that was all I could do. And I went into labor early. I went to the hospital had him naturally, he was still almost five pounds, but came out we spent 24 days in the NICU. Ultimately he did great. We didn't have any big setbacks. Going through that. And we have a healthy, strong, in will and body, six year old.
04:05 And where are you at now with your journey, and then I'll go back and ask some questions about your story.
Jennifer 06:51 I guess there's still a lot that happened that I kind of skipped over. But um, so after I had, Eli, things did just progressively get worse. For me, it was very hard. Thankfully, we did have a village behind us. And my in laws are only a couple blocks away. My mother and my father both they are divorced, but neither of them are any more than 20 or 30 minutes away at any given time. And I always had somebody that at the drop of a hat if we had an emergency or if I just didn't feel good that could take him. My mom ran her own office. My in laws are retired. So, you know, I unfortunately didn't feel like I there's a lot of the first six years I feel like I haven't been a full time parent, but with the help of parents in laws, and my husband, he has covered a lot through the time that we've had Eli, he has done a majority of the parenting. But he really, I mean, I would like to say that he really stepped up but I mean, he just took over in has been very strong for both of us through the whole thing. Of course, I said I got progressively worse. So after having him. I never the way I felt never corresponded with my enzymes, with my lab results. My labs could be high and I feel great. My labs could be low, closer to normal, and I'd feel horrible. But ultimately, I did get to end-stage liver disease.
I started having hospitalizations for bleed outs. I was in one time for sepsis, and then a couple of times for pancreatitis. The first ERCP I had, when we were going through diagnosis, came up fine. I had another one a couple of years later when I just overall felt worse and they thought maybe I had some sludge or a blockage in my bile ducts. We did an ERCP and I ended up that was the first time I had pancreatitis. I didn't have another ERCP for a while, but I just kind of became susceptible to that. And seems like I had to fight that a lot at home. So here we are now and six months ago, after being listed for a deceased donor for three years with the University of Kansas, KU in Kansas City. We went up to Mayo and I was able to do a living donor liver transplant and my husband was my donor. So after waiting, and not my MELD, not getting up to the point it needed to be to qualify for transplant to qualify for a phone call.
We went up to Mayo. And Mayo said you know you need to go home and tell people you're going to die without a living donor. Because I really didn't want to ask that of somebody but that's when it became apparent that if I was going to stay here and and help raise my son, whether it be part time or full time that I guess we better go home and figure out how to ask people for help. You know, beyond that village, about six months we had people trying, they weren't really getting anywhere. And then when we didn't really know what to do and didn't think it was going to work. My husband asked if he was a candidate. And he started going through the process, answered the questionnaire, got to the next step. Sent in bloodwork went to the next step. Next thing we know we're up there, he's getting evaluated, and they're saying, you know, he's a match, now lose a little bit of weight, you know, go through this, and we should be able to do this. So very grateful, very thankful. I like to say my husband is my hero. And on the note of Eli, that my son, yeah, he handled it great. We tried to keep him in the loop. You know, he knew we were going up to Mayo, he knew that Daddy was going to be able to give me a part of him to make me feel better. And then afterwards with our, with our incisions, with our scars, we talked about how that was our superhero scars. So he, he really did handle it like a champ.
PSC Mami- Monika 10:58 Thank you. And I know there's so much more. Right? Well, we tell our summarized stories, there's so much more in there. So I'm going to ask you about- let's go all the way back. When you met your now husband, did you already know that you had PSC?
Jennifer 11:17 I did. Yes.
PSC Mami- Monika 11:20 How was that conversation? We get a lot of questions in our group, right about dating and what that's like, what was that like to share that information?
Jennifer 11:30 You know, maybe it should be noted that I tend to overshare anyhow. But um, whenever I, when I met my now husband, I had recently lost my previous husband. So early 2012 was when I found out I had high liver enzymes. And come May of that year was when I was finding out that this is serious. And you know, I had had a doctor tell me that I had 10 years to death or transplant, just like the internet says, if you look it up. So by July, you know, I was having panic attacks. And, you know, just trying to figure how to cope with this. And my late husband and I decided to go on a motorcycle trip. That's what we enjoyed. We liked going on rides just about once a year, we would hop on the bikes and go somewhere on the bikes and come home on them. So this time we took off went on a trip. And unfortunately, while we were still gone, we had a wreck hit a mule deer going through Wyoming. And he unfortunately didn't make it, brain injuries. So part of my journey has been going through losing him going through the donation process with him. You know, that was a silver lining for us that his liver, his two kidneys and his heart all went to recipients that also needed organs. And yes, at that time, we were aware that I was probably going to need a transplant sometime in the future but didn't know him for sure.
Jennifer 12:56 So fast forward about nine months or so. And I've gone for a motorcycle ride for the first time since since the accident, and found out that it still felt good. I still liked riding I wasn't afraid of it. So the first weekend that I had gone for a ride. I went to-the following Monday I went to work. And all of my customers knew that I like to ride. I worked at the Hometown Bank. So I knew everybody and everybody knew me. And you know, they all asked did you go for a ride this weekend? It was nice. I said, You know what I did? I did go for a ride. Well, turns out we had an electrician in the bank that day, because we had had an electrical problem and he liked to ride. And he's from from my hometown. And he asked me to go for a ride sometime. And we've spent just about everyday together since. The topic of drinking did come up quick. You know, adults, what do you do? You go out, you have a drink. You know, I don't know if he thought it would calm the nerves or whatever. But I had to tell him right away, you know, I do have this health problem that I really shouldn't drink. And he didn't ask a lot of questions. He was supportive of it. And then it was- It wasn't two weeks into it that things just felt serious. And I told him, I was like so by the way, when I say I can't drink, I mean like not at all and like not ever. I said I have a serious liver disease. I feel good. I don't know where it's going. I might need a liver transplant in 10 years. And you're gonna have to wear a helmet every time you're on a motorcycle. I'm sorry, those are my two things. (laughs) And he, you know, he didn't act scared of it at all. Like I mentioned before, we're I don't know if age plays into it because we're not, you know, we're not kids coming into it. Like I said he's 37 and I was already 30, so I just I don't know if that helped him not making a big deal out of it, but we now skip on to... When the next conference came up, so later that year, he actually went to my first conference with me. We were not married yet. And my mom and I were supposed to go, it fell through with my mom going, so Roger stepped in. And he wasn't scared off by what we saw at the conference. So it really helped, you know, I really think it helped to strengthen us. And I'm glad that you know, he's been with me since the beginning.
PSC Mami- Monika 15:27 After that first conference, I believe we may be met at your second conference. Was it second?
Jennifer 15:34 No, I think we met the first wasn't Denver, your first as well?
PSC Mami- Monika 15:37 That's right, we did me at the first conference. And then the next conference, we both showed up pregnant.
Jennifer 15:44 Yes.
PSC Mami- Monika 15:45 Which was a wild experience. And I think having that experience together. So you said that you also had decided right to start your family? How did that go with your team with your,
Jennifer 15:58 Oh, I did not run it by any of them. I didn't really have a team at that point. I had gone for a second opinion, to make connections at Barnes Jewish, but really wasn't that far into it, that we had thought to discuss it. And, you know, like a bad person, I had decided that how bad gonna be? So we just progressed with things as as we want, and I got pregnant. And thankfully, everybody was supportive. And even after I had that, baby, whenever I talked to my hepatologist, at Barnes, you know, he would have supported us having another. I mean, he stressed that it wasn't the best idea, but that he would support me and, and whatever I had whatever we wanted, in any way he could, which we decided against it at that point. But yeah, I did have to see, they did recommend me see a high risk OB, just because of the diagnosis. Not necessarily because they thought something was going to go wrong. It was like it was more of a fear of the unknown and be prepared kind of approach. And but really all of-here I am in Southeast Kansas, like I said, I was I had my specialist at Barnes. But everything was handled locally through mine, high risk OB, and I just kind of kept a Barnes in the loop. Because luckily, things went, things went pretty smooth. Even though the last two months, I struggled and felt terrible. Really everything else was stable. My you know, I didn't have any numbers that were severely out of whack. Didn't have I hadn't experienced any bleed outs or anything at that point. So honestly, my team was not that involved.
PSC Mami- Monika 17:39 Talk to me a little bit about the NICU stay what that was like for you all that also at that point that you were starting to progress? What was that experience? Like? How are you how was the emotional piece of that process?
Jennifer 17:58 I have talked to other parents who have had children in the NICU, and I don't think I'm in the majority. And this was I do not have y'all maybe I should say I had no child experience before having my own. I'm an only child I don't have so I don't have any nieces or nephews that I've helped with. I don't even have any close cousins that have kids. Some of my friends had kids, but I still I just wasn't you know, life was busy and I didn't spend as much time with them as I should. So just literally no, no child experience. I think I changed one diaper before I had my child. And him being the only one having a baby and going through the NICU is the only thing I know. And especially with already having started go through this process of PSC and and chronic illness basically, you know, I go to specialists because I trust them and I trust their judgment. So we had a baby, he needed to go to the NICU. You know, I was prepared for that. As soon as I went into labor, I knew a baby that early would have to go through the NICU, but I trusted in the process. And like I said he didn't have any major setbacks while we were in there. So I didn't really have any big scares, things just you know, we just kind of did what we were told. I got to be there pretty often. You don't get to hold them like you do after you have one I think is about a week before I actually had that skin to skin contact with them. But I had a really good NICU experience and it was still local. It wasn't through Barnes wasn't through teaching hospital still just our local regional hospital where I'd had him but man, they were great. I said I really feel like I was fortunate through the whole thing to be able to stay local. There's just about, now just about anything the firsts first advice I give people if they get any diagnosis, just get a second opinion and go to a teaching hospital. But through the pregnancy, my local hospital did great. Even through the NICU.
PSC Mami- Monika 19:59 What is about teaching hospitals that you recommend.
Jennifer 20:03 I don't really, I don't really know how to say it any different, but they just know. They just know. For me, my experience has been just about any local doctor that I've talked to, you know, they've heard of PSC. They had, you know, they saw a paragraph and one of their textbooks at some time going through med school, but that is their, that's all the experience they have with it. And I think if you have a good primary doctor, and they suspect this, that they will tell you to go to a teaching hospital for those reasons, that teaching hospitals are just more efficient. They're just more knowledgeable, more educated. The whole nine yards.
PSC Mami- Monika 20:48 We've all had those experiences, right? Lately, I had a PCP stand in my doctor was busy. And when he learned at PSC, like what you have PSC, like, he was so excited, I was like, whoa, I'm not even coming to you for that.
Jennifer 21:05 Yeah, you become a rock star to all the local doctors, because I want to learn about you, but they, they're scared to help ya.
PSC Mami- Monika 21:11 So you mentioned after having Eli, your disease progressed, what was that like? What was that experience? And just tell us a little bit about that?
Jennifer 21:23 Um, it was, it was pretty hard. Well, I mean, who am I kidding? It was, it was very hard, emotionally. And physically, obviously, the physical effects are probably pretty easy to understand. But you know, mental, like I said, my husband was the 100% stepped up, in was prepared. But there were times he needed to do things, or he really needed a mental break to go outside and just work on something in the garage. And he's very active, he loves to be outdoors. And so we had Eli, I wasn't bouncing back all that quick. Like I said, at this point, it was still mostly just, I didn't feel good, I hurt, I get so tired. But I say all that because I do remember, you know, there were times that I'm just standing in the hallway, screaming that I'm sorry, I can't do it, I just have to lay down. And Eli is in his bedroom needing attention. And, you know, Rogers trying to take that break. So it was it was really tough to be able to know he stepped up, but there were times that I still needed to fight through it and step up. And it was, I mean, it was it was hard. It was just hard.
Jennifer 22:42 And as Eli got older, you know, I personally know if you ask my husband, he may feel different. I don't know. This is just me talking, you know, I can definitely tell that I feel like the dynamics that we each get off Eli are just completely different. And I don't know, maybe, you know, I've always heard little boys are mama's boys, and that moms are- whether you have a boy or girl seems like the stereotypical mom is harsh. And dad is the fun one. And roles are definitely reversed. I spoiled Eli, more than I should probably whenever I felt good, because you I mean, I did always had in the back of my head after my health started getting worse after I had him, you know, I had fears of I may not be around to help raise him, he may. And those were things I thought about before we had him too. But I really believe in the power of people. And I thought there are other kids out there that have lost their moms. And that doesn't mean I should deny us having a child, Roger having a child. And you know, I'm a mom, I want him to grow up and change the world. So thought I shouldn't deny the world of whatever wonderful thing he's gonna be able to do when he grows up. But, you know, that was, that was hard. I spoiled him to the point where I had disciplinary problems. Roger had to be the disciplinarian most of the time. And, you know, now post-transplant I feel great, and definitely feel like I'm fighting those old habits that have that are already very solid in him from having a weak mom. I mean, just overall, I was a weak mom. I said, I felt like I was only parenting part time. That's all I had the energy to do.
PSC Mami- Monika 24:24 As your journey progressed, you know, we know each other pretty well. So I know that for you also the diagnosis process sort of once you were getting sicker, that there were actually some questions about diagnosis. Can you talk a little bit about that? Because I feel like a lot of people also go through that. Wait, do you have this? Do you have that? Can you speak a little bit to that experience?
Jennifer 24:45 Sure. Yeah, it when I was originally diagnosed, the local doctor diagnosed me with primary biliary cholangitis I believe it's still called cirrhosis at the time but he originally said PBC. So when I went on to Barnes for my second opinion during this diagnosis, they said no it's PSC. How did he come up with PBC? I don't know. That's why I come to you guys. So we have operated under the assumption that it was PSC. I did not have the markers, the blood markers that would dictate PBC. I have had a better time of cholangitis. I don't have seems like I don't have the cholangitis attacks or didn't have the cholangitis attacks, that other PSCers typically have but and I have Sjogren’s syndrome. I have dry eyes, dry mouth, I have Raynaud's, which is like an overreaction to cold and my and my digits and my fingers and my toes. And those things correspond closer with PBC. But I did not have a high titer marker, I did not have the positive ANA or AMA and I had you know where I had dilations and defects that's so they still stuck with the PSC and then eventually I got to the point where I just had cirrhosis. I was in the end stage liver disease still don't have the positive blood markers. And but I quit worrying about it because it just didn't really matter anymore. I needed y'all got to the point I need to be listed for transplant and I was always on Urso and you know during this time, five years ago or so I don't know where it's still at. PBC, you know, I know one of the differences was PBC. PBCers did typically start on Urso and take Urso and they believe there were positive effects from it. And PSCers- I know my first our first couple of conferences seemed like as a 50-50 split, some of them were on Urso some of them weren't. So I was always on it. So I was getting the treatment for it, whether that's what it was or not. As time went on at over the last couple of years, I did my blood work changed those markers, that titer marker started, started to get larger over time. And I did get those positive results in my blood work. So come transplant time, it was basically determined, I definitely have PBC and they said, if I have PSC that it's early, and basically they weren't going to investigate it, because it would be so unlikely that I had both that they weren't going to put the time and money into it, basically. So in the end, I was diagnosed with PBC and possible PSC but of course, I was already too dug into the PSC community to leave it.
PSC Mami- Monika 27:42 And we wouldn't let you.
Jennifer 27:45 Yes, thankfully. You know, and then in the end I don't have the-also don't have the other gastrointestinal issues. I don't have UC you know, I don't have a correlating bowel disease. So I can't speak to those experiences just like most of you girls can't speak to the dry eyes and dry mouth but you know, the, the cirrhosis part, the liver part, the chronic liver diseases is all still the same. It's all it's all still very relatable.
PSC Mami- Monika 28:14 And I know one of the things for you that was a challenge was itching, can you talk a little bit about that and what it is and your experience with it?
Jennifer 28:24 Sure. Of course, they technically call it pruritis. But is it's just an insatiable itch, almost a burning itch that you just you can't control it. And I know initially I just tried to not scratch you know, you get a for me, it would always start with like a fire in my feet. And I would start just digging at it. And you might feel in my feet. I never felt any satisfying relief from it. Now whenever it would spread up to my legs, or if it was starting the palms of my hands and spread to my arms. You know, I would scratch and while the scratches taking place, I might feel you know, a tinge of relief that immediately go away so I would just scratch until I'd make a sore and it would hurt bad enough. I wouldn't touch it. I tried creams. I tried cooling creams. I know I've heard a lot of a lot of people say that they have baby soft skin but it still just itches like crazy. And I itched in the you know the strangest spots- inside my ears was one of the bad ones so hard to- I was gonna say it's so hard to scratch. But then again, you know, I'd stick a mechanical pencil in there to try to scratch in my ear. It didn't satisfy it.
Jennifer 30:00 You know when my itching flared up during pregnancy, the I just ended up a sores all over my body and my body was so stressed they wouldn't heal. And that was one of my big things through the last few months of pregnancy, with those symptoms flaring up so bad. Now, I was still working full time, up until I had Eli and, and continue to work full time after. But I would come home from work, I go in, you know, work eight to five, I'd come home, I'd get in the shower, to try to stop the itching for a minute. And then, you know, my arms and my legs out and go lay down in bed naked and just lay there. That was it was about all I was capable of at that point. And the only time I got any relief. And for me with the itching, whether we're talking about pregnancy, or just in general, really, I just had to try mind over matter. And I know that people listening to your podcast more than likely know Tawny and Tawny has that brush that she has always promoted as a good itching tool. And it is I mean, you can you can try to scratch with it and it doesn't tear ya up. But for me, it just didn't didn't give me any kind of satisfaction satisfaction. But really just became mind over matter. Because I'd start you know, the bottom of my foot would start to itch. And I would just have to focus on it, like meditate on that itch and not touch it. So if I think about anything else, I instinctively I'd reach down and start scratching it. And that was the only way. Give me about 10 minutes. It would take a while- Don't touch me. Don't mess with me. Let me focus through this itch. And it would go away for a little bit before it move on to somewhere else. You know you touch it. It's just like you just threw gas on a wildfire. And it would just spread up your leg and up your whole body.
Jennifer 30:55 That is quite the image.
Jennifer 31:56 Yeah, you're welcome.
PSC Mami- Monika 31:58 Itching is wild. It is wild for sure.
Jennifer 32:02 It is. Wildfire. Itching and fatigue were always my main symptoms until the end stage complication started with ascites, esophageal varices and hepatic encephalopathy.
PSC Mami- Monika 32:15 I know you've talked about the hepatic and I always say it wrong encephalopathy. What was that like for you? Especially at that point you were parenting? You were home. Can you talk about that experience? Because I don't think a lot of people until you have it really understand what that aspect is like.
Jennifer 32:35 Yeah, I'm tell you what, I had to keep my phone on. I keep my ringer on and my volume turned all the way up. Because I had a good support network that would that would call me frequently to make sure that I was doing okay. And encephalopathy- two months, I'll go back a little bit- two months before my transplant, I had been in the hospital four times for variceal bleeds. I had ended up needing- I had several blood transfusions. The last, the last... Well really, I guess the first two or three years of Eli's life, I was in the hospital enough over the bleed outs and pancreatitis that as Eli was learning who lived where. You know, we'd go by, we would go by Roger's parents house, you know, so that's Mimi and Papa's house. You know, we would go over to my mom's house or that's Gaga's house. Well, it got to the point where we would drive by the Regional Hospital. And he'd say, oh, there's Mama. And that, that was heartbreaking. Roger was good about still bringing about bringing him in at least once while I'd be in the hospital to see me so he would know I was okay. And like I said, he handled transplant. Well, he handled those times well, too.
Jennifer 33:56 Of course, I was glad I got to see him that would give me a boost. But yeah, that that was heartbreaking because of those bleeds, and I ended up needing to have a TIPS done. And a TIPS is a trans jugular intrahepatic portosystemic shunt. So I had portal hypertension from the cirrhosis of the liver, it got so hard that the blood couldn't pass through it freely. It started backing up and enlarged my spleen. And this TIPS procedure was- they would actually go down to the liver through your jugular and your neck that actually feed it all the way through down your neck through your heart, down to your spleen through your spleen and up to your liver. And I mean though, the way I describe it is they would bore a path through the center of your liver and insert a stent. So they basically shunted the blood I say around because it didn't go through the liver. Although the stent did go through the center of the liver. There's basically to just take the back pressure off, and let the blood just keep flowing without being held up by the liver. But that also means it's not being filtered, and it's not being cleaned. So you have toxins building up. And that causes brain fog causes the hepatic encephalopathy.
Jennifer 35:16 And my experiences with it is that- my grandmother-I helped take care of my grandmother in her later years, and she had dementia. And after I had dealt with it for a while, I felt like it was very dementia-like. With it, you, I found out, I mean, all of this is basically coming from secondhand accounts, because the way you experience it and the way everyone else is viewing it is not the same. But it kind of started with, I'd ask the same question over and over. You know, I would ask Roger a question and he'd answer and you just sound hateful about it, or at least sound annoyed about it. I'd say I'm sorry. And he said, Well, he said the third time you've asked, I said, Well, did you answer me? And he said, yes. And then you know, it got to where I was like, did I acknowledge that you answered it? And did I maybe not hear you and he's like, though you responded too. So early on, I figured out that I was forgetting things. And then it got to where I kept forgetting to let my dog back in after I would send her out to potty. So was out there one time. I, you know, I keep my eyes on her, I have to focus on her. Because literally anything shiny over here would catch my attention. I totally forget what I was out there doing. So I'm out there with her one of the last times and I open the door and I watch her go in in front of me. And then I come in and this was at the end of the day. So I lay down for bed. And like 10 minutes later, we hear rustling noise. Roger asks me did you let Sophie back in? I said yes. I specifically remember watching her walk in, I had her come in before me so I could not forget her outside. She's a Chihuahua. So could she survive outside overnight? Maybe not, you know, pretty sure not a good idea either way. But yes, I let her in. Ten minutes later, we're here the wrestling again. And I look over at a dog bed and I don't see her. So I open the back door. And there she is at the back door. So that's what I feel like it's very dementia like, because here- then I found out not only am I not remembering, but things that I think I remember I'm remembering wrong. And that was you know, doctors had told, had been warning Roger to watch. Watch for signs of confusion, watch for signs of forgetfulness.
Jennifer 37:32 And that's whenever it came to a time of I had to look at quitting work, I had to look at not driving just because of the slow reaction time. And the the forgetfulness I had gotten to where I would, I would leave work. And I was gonna go to the gas station. And I would miss the turn and the gas station is four blocks away, somehow in those four blocks, I think about something else and forget where I was going or what I was doing. So Eli had been in a daycare up until that point. And we were having some behavioral problems. He was hitting and so it was a good time for me to quit work and stay home with him was you know, it was kind of a difficult situation of am I okay enough to stay home with him. And that's, that's where that's where the village really stepped in. And I always had somebody basically with me and checking on me. We FaceTime a lot. My mother-in-law came over a lot. So it was tough. It was tough, because there were basically times where he he could have been just left unattended, and I could have I had gone into- I missed about a week of work because I just didn't feel good. And I told Roger that- well, truth be told a curse word came out of Eli's mouth. And I said he didn't learn that from me. He learned that from somebody else. And here after I stayed home a week for not feeling good and feeling foggy. Roger told-I said I thought I had just sat in my recliner all week basically got ready for bed, go to bed, get up again the next morning, send Eli to daycare, sit in my recliner. And he was like Oh no. He said I was banging dishes. You're trying to do housework and just cussing my head off. He was like, I hate to tell you that he learned that from you. And I thought oh my gosh. And so it was, it was a pretty big deal. And we had to be really cautious, really cautious about having Eli around with my encephalopathy. But like I said thankfully we had, we've always had the caregivers available that we have that we've needed.
PSC Mami- Monika 39:53 Yeah. And about how long did that last?
Jennifer 39:57 Until transplant. Definitely until transplant. And, and I had, you know, I'm still, I was already a little ditzy, I like to say, and I think I think I'm being reminded of that because I feel so much sharper and so much more alert. And all my all my family was saying that my hearing was better after transplant. I said no, I said, it's that I can think it's that I can process, it's that I can actually do something and listen at the same time or I can try to be engaging this person and I still recognize what's going on behind me, you know, and those are things that were impossible.
PSC Mami- Monika 40:36 Yeah, that's a hard one that we don't always talk about, or you know, that not everyone goes through, but is a really important side effect to be aware of. And we can definitely post some resources as well on the website, because I know there's some really great resources out there.
Jennifer 40:51 Yes. And a big issue when we're talking about parenting.
PSC Mami- Monika 40:54 Absolutely. I want to go back to Roger bringing Eli to the hospital. And how did you all talk to him? I mean, he was probably younger at that time. How are the conversations around that? What was that experience like? What were Roger and your conversations about visits and communication? Do you remember how you talked to Eli about what was going on?
Jennifer 41:19 Roger did most of the talking. He did most of the handling of it. He worked really hard to keep the to keep the vocabulary and to keep the content on age appropriate level. I started being hospitalized when Eli was around two, I believe, so young enough that I don't think he had a negative disposition to hospitals, if that makes sense. So he didn't act scared. He didn't. When I was first being hospitalized, you know, I would have an IV and I would be in the bed. I, you know, and he'd come over and like be trying to tug on it and things. So overall, he acted pretty comfortable in there. I guess, which is a good thing since he is comfortable wherever he was, as long as Mom and Dad were there. But it did progress to the point where I was getting, we had more hospitalizations. And you know, I would be in the hospital at Barnes Jewish. Yeah. So four and a half hours away from home after I switched my care to University of Kansas, switched it to KU after being at Barnes for about three years, which is closer. But you know, at that point I was- my hospitalizations were getting a little more severe. And I felt worse. So then it would, you know, be more like, let's time a FaceTime call. Whenever I feel up to because I really did not want him to see me down. I would rather he not see me at all, then see me down too hard.
PSC Mami- Monika 42:56 And going forward to the transplant process as parents, right. That's a I'm sure there were discussions or thinking about both of you being in surgery. What was that experience like?
Jennifer 43:08 One of the reasons we didn't start out with having Roger tested was because, you know, that we didn't want both of us parents going through major surgery. And on top of that the caregiver factor. We knew-you know, the plan was Roger would be my caregiver, after I had transplant. Of course, if it was going to be he and I doing it together, I was going to need a caregiver, Roger was going to need his own caregiver. And we were going to have to have a third caregiver to take care of Eli, it is, you know, I have seen parents going through or being evaluated to be the donor for their children. And, you know, I've seen sometimes they think they're going to be able, that they're not going to need someone to take care of them, and they'll still be able to help with their, you know, with their child and it's like, no, no, you just you can't, there's you have to have so many caregivers, if the scenario is, you know, your immediate family like that. But yeah, huge deal. And I was, like I said, that's why we didn't start there. After it became apparent after we tried looking for the donor outside of our household. You know, of course, his mom and dad stepped up and said, we'll do, like I said they're retired and said we'll do whatever is necessary. My mom, you know, she said the same thing even though she was still working. She had always prepared her employer what was going on and that if I needed her that she was going to be there whether they liked it or not kind of scenario, which I don't think they ever fussed at her for it. And, you know, thinking about Eli he ended up having to be with his grandma, with Roger's mom, for almost a month because of course after transplant you have to stay local with the transplant hospital. So long been for your checkups and follow ups and such. But, you know, part of me being, you know, I just generically say part of me being sick the whole time was he was already very used to being with his grandparents. Like I said, we'd always been good about him still seeing me in the hospital or FaceTiming. So that he knew that mom was okay. But, you know, that was a long spell for them to be together. But he still did really well.
PSC Mami- Monika 45:22 Does he speak about or ask about, you know, your illness, the process, the transplant? Does he have questions about it?
Jennifer 45:30 No, no, he doesn't like it's, like I say, I didn't know any different. With him being my only child experience and you know how to good NICU experience. He doesn't know. He doesn't know anything different. And I think he's just trusted the system. instinctually like, I tried to raise him to be, I guess.
PSC Mami- Monika 45:52 And how do you talk about appointments, things with him when you talk to him?
Jennifer 45:58 He just knows that Mama had a lot of doctor's appointments. And now he knows that Mama gets her blood drawn a lot. He's even gone with me a few times. For my lab draws because I've had to had weekly lab draws since transplant six months, almost six months ago. I don't know. It's just it's all very normal for him is that I think we we have some behavioral issues. From me not being able to be a primary parent, a strong parent, like I like I wanted to be but as far as the medical stuff for doctor's appointments and procedures and things, as far as he knows, it's just normal.
PSC Mami- Monika 46:38 Same over here. A lot of it just feels like oh, yeah, that's gonna happen. When my alarm goes off. He yells out "Mom, meds!"
Jennifer 46:48 "Mom, your pill alarm! Your pill alarm is going off. Do you want me to get it?" No, cuz I'll forget. "Hey, Mom is that the doctor?" You know, my phone will ring. I'll say yeah, doctor's office or No, it's somebody else.
PSC Mami- Monika 47:05 And can we touch a little bit on you mentioned early on about having gone through the donation process from the viewpoint of a family choosing to donate?
Jennifer 47:16 Yeah, absolutely.
PSC Mami- Monika 47:17 How was that for you to be on the other end of that?
Jennifer 47:21 And, you know, I'm glad you brought it up, because I've become kind of passionate about encouraging recipients to reach out to donor families. For me, when the accident happened, I was just being diagnosed with something really wrong. I was pretty sure that it was, you know, one of these chronic biliary diseases, but hopefully, like most families are, we were already prepared that I that I knew that he supported organ donation. And that if something happened to either one of us, that's what we would want. I've also said, I can understand why some families don't donate. Because the process is hard. It's really hard. My late husband was in a coma for eight days before he passed, before he succumbed to his brain injuries. And, you know, the last, the last two full days, he was starting to decline. And the transplant team is close. You know, we were in an ICU room, and there was always somebody kinda, I'll say, loitering. I hate to put a bad spin on it. But, you know, there was always a person out there ready to go into action. Should he be pronounced brain dead? You know, because time is of the essence. So it's hard because I knew that person was out there, you know, not hoping for the worst, but ready for the worst. And that, you know, that's you have to deal with that while it's going on. And then as soon as he was pronounced you immediately start going through the process. And, like, I got a phone call. And I had to go through a whole bunch of questions about him, about his health history. And it's some, it's, it's some ugly stuff that they have to cover, you know, talking about drug use, you know, and different sexual interactions that he may or may not have had. And, you know, they have to cover a lot of bases. A lot of bases medically before they can go through with it. So, I mean, it's hard, it, it makes the process of being with your loved one hard at the end, it makes the process you really don't want to answer questions like that right after your loved one has passed. But, you know, it's important to keep the bigger picture in mind because, you know, I tell recipients that even before I had my transplant, I said, you know, I get that it's that you think how can I ever...how can I ever thank them enough? For, you know, be appreciative enough, or whatnot, but my, my late husband, he was going to die whether I donated his organs or not, you know, it's total misconceptions, I think it's safe to say on podcast that, you know, things like, they're not going to take care of my loved one as well as they're not going to try to save them like they would if he wasn't an organ donor, blah, blah, blah, no, my husband was going to pass away whether I donated his organs or not. So that really is the silver lining, the good, the just about the only good that can come from it. So, you know, it was just it was the only thing to do. And it really I think it helps has a grieving process for donated as he has a really famous silver lining that I have just about the only good that can come from it.
Jennifer 50:50 So, you know, it was just it was the only thing to do. And it really, I think it helped the grieving process for me to know the donors or their families, I got generic kind of summaries of what organs went to who. And you know, that was amazing, whenever I got a letter that said that one of his kidneys went to a single mom of four somewhere on the East Coast. And you know, I thought here, this woman, it, it probably saved her life and at least changed her life. So that now she was able to take care of her four kids and not be sitting in a dialysis clinic for most of her days, you know, and then hear about the other kidney recipient, the liver patient, hear about the heart recipient. You know, that was, you know, that was amazing news. That's what I got to look forward to. After that. I very much was of the mindset, especially after becoming a part of PSC Partners. You know, would it be nice to get a get a liver free card, because I donated one, sure, it doesn't really work that way. And I'm, and I knew it didn't work that way. But you know, I also I still didn't know if I was going to need a liver at that time, it was early on. For all I knew, you know, after joining PSC partners, you know, we started hearing the motto that you're much more likely to die with PSC than from PSC. So I feel unique, that I can say that I've experienced both sides of the coin, I like to say, but still, for me, the scenarios are still pretty separate.
PSC Mami- Monika 52:28 Yeah, I remember when you shared that you'd received the liver recipients letter. And I had been going back and forth about writing my letter, and I couldn't figure out what to say. And you were so helpful to just be like, just write a letter, like, just experiencing your joy in receiving the letter, and how much it meant to you made such a difference to be able to say, okay, even if it's one line, I need to get it together and write this letter, because it's so emotional,
Jennifer 52:56 Yes
PSC Mami- Monika 52:56 It's such an emotional process, and I don't want to have to, I mean, it took me a very long time after my transplant to write it. But seeing the process through your eyes was so helpful. So thank you so much for sharing, because I, I didn't even know before this conversation, that process of the, how challenging it is, right? To say yes, and what that entails,
Jennifer 53:16 Yes, I would also like to share, which I believe I showed you, but I would also since we're taking a little bit of time to address this, I would like to share with everybody else, you know, five years after the accident, five years after I donated my late husband's organs. Something about that five year mark just struck me immediately following all of it, you know, I liked hearing those generic updates. And I thought, you know, I'll see how I feel if they want to contact me, that's great. You know, I don't know if I need to contact him. But something about that five year anniversary, I could just feel something in me saying reach out, reach out and trying to figure out what to say from my end was, you know, wasn't that easy, but having now worked with so many people on the transplant list. And then, you know, throughout the course of the, through the course of time that you and I both have been with PSC Partners, you know, so many people in our close circle went through transplant, you know, me being able to see the flip side of it, then, you know, helped me figure out what I should put in my letter to our recipients. And, you know, I thought it was important to say, you know. My main thing was saying, I just hope you're all living a life better than the life you knew. And you know, hoping that you're able to live the life that you want to live in not being limited by being sick. I said, you know, I don't I didn't expect you to get my husband's organs and you have to become a Nobel Prize winner. You know, I just hope you're getting to live life that you want to live. So I thought maybe address like taking any pressure off. You had to go do something extraordinary. Like no, I just want you to be happy I just want, I just hope you're happy and healthy.
PSC Mami- Monika 55:02 Yeah. And for folks who maybe haven't gone through the transplant process, I can speak for my case, you don't know anything about your donor, I literally know nothing, but you are given the chance to reach out. And from my understanding, the family has the choice to either receive your communication or not. So you can send a letter and not know whether it was received or not. And my understanding, and you can correct this, Jennifer is that the donor family can also send, but we don't have you know, as a recipient, you can choose whether to receive that communication are not. So there is a lot in that process that is about protecting privacy, protecting whether you want to have that contact or not. So I always tell people, the stories you see on the news that are very, like donors meeting the recipient families, and they're all very dramatic and emotional. That's not necessarily the norm. Often, it is a very anonymous process.
Jennifer 56:01 It takes a long time. I sent that letter in July, I guess 2017. And it was a full year before I received a response from his recipient. And I don't know his last name. I know, his name's Todd. And I love thinking about I know, you know, he shared with me that him and his wife travel and promote organ donation where they go, I love having that thought of picturing him and his wife out seeing the world and I mean, it's it's kind of fairy tale-ish in my mind. So maybe also a note to recipients that even if you haven't gone and solved world hunger, or have created world peace, I still may fantasize on my head that you have.
PSC Mami- Monika 56:46 Right? Can you you've had quite the journey. Can you tell me something that you're really proud of that you've experienced through this time? Anything that really just brings you joy? And you're like, Yes, I did accomplished, got through that.
Jennifer 57:00 Life's not easy. I don't care if you have chronic illness, if you've experienced loss, you know, whatever you've gone through, everybody has gone through something. And most people are not vocal about it. Most people don't, you know, wear it on their sleeve. But everybody has gone through something of some level that drags them down or that just eats at them in the back of their head. I have I've been I was hit by a drunk driver, drove into the Joplin tornado, of course, survived a fatal motorcycle wreck, and now have gone through major organ transplant. I want to say I feel invincible, but I don't I mean, I just feel very blessed and very fortunate and think, man, I'm here for a reason, I better figure out what that reason is. And for everybody has been through something. And that's my example of why we all just need to be kind to one another. It's just living in general is not easy. No matter what you've been through. I remember when I was younger, I heard my mom you know, say something about none of us come out of it alive or something like that, you have to make a choice to continue, whether you have PSC or any other whether you got a cold or you have PSC, you have to make a choice to be to find joy each day. And then to keep your purpose.
PSC Mami- Monika 58:32 Beautifully stated Zehra anything I haven't asked you about that you want to share?
Jennifer 58:38 Now I'm excited that you asked me about donating.
PSC Mami- Monika 58:41 Thank you so much for sharing that that was really special.
Jennifer 58:44 I can talk about it without crying now. That's good.
PSC Mami- Monika 58:47 Thank you so, so much, my friend for speaking your truth and your story and sharing and hopefully we get to see you soon.
Jennifer 58:58 Yes, absolutely. I'm so happy to be a part of this.
PSC Mami- Monika 59:00 Thank you.
PSC Mami- Monika 59:04 Gracias for joining me and bearing witness to this story today. Every PSC journey is unique, and I'm so glad that we were able to share this on today. Please reach out to me if you'd like to share your story at the intersection of PSC and parenthood. There's a link at the website pscmami.com as well as other stories that have been shared over the years. Also, if you could share these episodes with your networks, you never know who they may reach in their time of need. Gracias.
