Pregnancy & Chronic Disease

 

Well, I have a lot to catch people up on. If we aren't friends on Facebook or other social media, then.... SURPRISE! I'm pregnant. A lot has changed in the past 3 months and I'm not really sure where to start. So, we'll start at the beginning. 

One of the things I was struggling with at my last visit to UT was just how "normal" I was feeling. I made it pretty clear in the last blog that I was feeling better and not really convinced that I was chronically ill as my medical chart states. I got the itch to have another baby and started the process of talking to my MD who recommended I talk to my OB, who referred me to Maternal Fetal Medicine (MFM) at St. Luke's. My last stop was UT to get the green light from my hepatologist. As you read in the last blog, he wanted to get the routine imaging and EGD out of the way and then said it was ok to get pregnant... Well, I had already had it in my head that since MFM said go, we should start trying because one of the concerns was that if I ever needed a liver transplant, you can't get pregnant for 18 months to 2 years after that and I was not waiting to get to that point, plus add 2 years. My youngest was 1 and 1/2 and I wasn't going to have 4+ years between them. My husband and I talked and decided it was now or never. Turns out, I was already pregnant when I was in UT in March. Just very, very early - about 4 weeks. 

So, UT liver appointments that had been scheduled in April got canceled and rescheduled until the second trimester and all the Dr/OB visits began. I had no idea what I was getting into. 

Early Pregnancy

The Miscarriage Scare: I got my first positive pregnancy test on March 9th, 2021, and told my husband. I hadn't even told my family that I was pregnant yet. We had a family photo shoot scheduled on April 14th and I was going to surprise my family by taking off an overshirt and wearing something that said, "This is the last one, I swear", or something to that effect. I had my first OB interview phone call on March 11th. I was spending time with my parents, sister, and her family on March 13th and was getting anxious about not telling them I was pregnant yet, so I was just about to spill the beans when I felt a gush.... down there. I instantly knew what it was. Blood. My mind was racing and I was panicking. I went straight for the bathroom and sure enough, there was a ton of blood. I came out crying and just called for my mother. I was sobbing, fell to the floor, and couldn't even get the words out. She just hugged me and asked, "What is wrong? What is wrong?", until I finally got the words out. "I think I'm having a miscarriage." That night was... terrifying, devastating. I was reliving all my grief from losing my son, Mason, 4 years ago and the miscarriage I had when I was 19 years old. I was broken and angry to say the least. Mad at God for being there... again. Fast forward, I obviously didn't lose the baby. I had two OB visits checking my HCG levels a week apart to see if they were rising and an early ultrasound to confirm that baby was still there, there was a heartbeat and it was still alive. The ultrasound showed that I had a subchorionic hematoma that had hemorrhaged. They don't know what causes them. It just happened. 

Ascites: One thing the nurse on the phone call on March 11th had told me was that the OB said I needed to stop taking one of my water pills, Spironolactone, because it can "feminized the fetus" if it's a boy. Sounded not good, so I stopped. As if the almost miscarriage wasn't scary enough, I thought things were looking brighter and going up from there but I was wrong. I never really knew just how much those stinking tiny pills worked! I took Spironolactone and Lasix to help control the ascites (water/fluid retention caused by my liver failure). I could tell when I ate something super salty or greasy that I was retaining more water some days than others but I was pretty much down to a comfortable weight. I could already tell and had told my OB on March 22nd that I was starting to hold fluid. Those two visits where they were checking my HCG that were a week apart, I was 8 lbs heavier! 8 lbs of water in 7 days. That is not normal and also very not comfortable. I looked 4 months pregnant and I was barely 8 weeks at that point. That started a series of me calling my MD, the OB, and MFM almost every day trying to get someone to understand just how much pain and discomfort I was in due to the fluid. I almost went to the ER twice because I couldn't breathe because I was so swollen and uncomfortable. If you know me, I'm not a very large person. I'm 5' 0". My 8lbs of water weight gain was from 102 to 110 lbs in 7 days. My MD wouldn't adjust my dosage of the Lasix without hearing from my hepatologist, the hepatologist didn't want to increase it without talking to MFM and MFM wouldn't do anything because I wasn't established as a patient with them yet. My first appointment with MFM was on April 9th! It was a rough couple of weeks until I finally got my Lasix adjusted and was established with MFM. I'm pretty sure I just got used to holding the weight and I never lost it. Miserable.

Glass Half Full - Glass Half Empty: I had my visit with MFM on April 9th. When I had my virtual visit, I talked with a different doctor than I saw on April 9th. The latter was more of a glass-half-empty type. I've learned to appreciate his take on things because he is a plan-for-the-worst-but-hope-for-the-best type as well. He went over and over everything in my chart with a fine-toothed comb and basically said that he wanted to talk to my hepatologist and see what his concerns were for me because if I'm not doing well, baby won't do well. That struck me hard and started a whole new way of thinking for me. Of course, I had realized that and but had been feeling so good prior to pregnancy so it seemed like common sense until he started picking things apart and really explaining what could happen to me while pregnant. 

• bleeding varices - increased blood volume and water retention increases the risk to 80% chance of bleeding varices and possible death while pregnant.
• not enough amniotic fluid - taking water pills to get rid of water can decrease fluid for baby too so baby won't develop properly. Amniotic fluid creates room for growth in the womb and develops the lungs. 
• low potassium - Lasix is hard on the kidneys and can cause low potassium which leads to heart failture.
• phlebitis - "inflamed veins" can turn into deep vein thrombophlebitis which can cause blot clots which can lead to a pulmonary embolism. 

I'll stop there. There's more, I'm sure. Basically, that first appointment ended with me being wide-eyed and mortified and doing a lot of research. I waited to hear back from MFM after he talked to my hepatologist and decided, 

• I need to be seen more often than normal OB visits and would only be seen by MFM so nothing gets lost in the gray area in communication. 
• I have to get frequent blood draws to check my potassium levels.
• I have to have more ultrasounds to check for vitality and then growth and development.
• I needed to get the EGD (upper endoscopy to check for varices) done ASAP in the second trimester to see if varices were bleeding or getting worse due to the increasing volume of blood and fluid retention. 
• I needed to establish a current relationship with a local GI doctor in case of emergencies for bleeds or other issues but would ultimately be life-flighted to UT for anything else.
• I had to understand and prepare for the idea that if pregnancy became too complicated, I might have to move to UT to be close to the University of Utah farther along in pregnancy.

That's a lot to take in. Just mentally preparing for all of that is a lot. I was still half-expecting to miscarry any day, was miserable feeling with the extra 8 lbs of water weight and then I started feeling a weird burning sensation in my right calf. I waited a couple days and then I saw a vein popping out where it felt warm and I had the sensation. My sister being a nurse, told me to call because she thought I had a blood clot. MFM took a look and said it was the aforementioned phlebitis (which is why I even put it on that list). Not something I have ever had in pregnancy. It can be common in women who are pregnant - similar to getting varicose veins. They ordered some compression socks for me and I wear them when I have to stand a lot. Basically, I could get more, it isn't deep right now - just superficial. I can ice it if it hurts and wear the socks to keep more from appearing, but ultimately I'll have to get the vein stripped after pregnancy to get it to go away. Joy. 

Plain Old Sick: Then it hit. Morning sickness. I felt so good - besides everything that had already happened in the first 8 weeks of pregnancy. Then, I started feeling like death... every day. All-day. I expected the tiredness and nausea because I get it with all the pregnancies, but this was different. I have never had to take medications while pregnant. The water pill, lactulose, having ascites, and morning sickness all at once proved to be a lot. Plus getting glutened makes me nauseous (from having Celiac). 

• Side effects of my Lasix = dizziness, nausea. 
• Side effects of lactulose = upset stomach, nausea. 
• Size effect of ascites = nausea. 
• Morning sickness = NAUSEA. 

I honestly didn't want to do anything most days for quite a while. I already struggled with fatigue from Celiac and chronic illness, then add pregnancy. First thing in the morning when I take all my medicine it was this game of do I take my pills and then eat? Eat and then take my pills? Which will make me sicker? I never won. I was just always sick. By the end of the day, I was so bloated and so nauseous, I couldn't even get off the couch to help get the kids to bed. I felt horrible inside and out. 

What Have I Done?: I had a follow-up appointment with MFM at 12 weeks and was eligible to do the Harmony test to find out the sex of the baby and check for chromosomal abnormalities. My mom came along to see baby on ultrasound. Besides being really sick and tired, all seemed well. Baby was moving around, we sent blood off to get tested and I had a chat with the doctor. I knew having my mom there would mean she would ask all the hard questions. I didn't expect to end up crying and feeling the way I did. I realized....it was guilt that I was feeling. After 4 weeks of being miserably sick, going through all the complications of being chronically ill and scheduling all the appointments and visits and literally sitting in the same room every two weeks just to see if the baby was even alive... I felt guilty. Guilty for being naive enough to think I was well enough to have another baby. Guilty for putting the baby's life at risk. Guilty for putting my own life at risk for the sake of my husband and two living children and family. Just..... guilty. I just started crying. Seeing how I was feeling the doctor said, "if you weren't healthy enough to get pregnant, you wouldn't have been able to." Granted, this is doctor glass-half-full this visit, but I really appreciated what he had to say. It brought a sliver of light into the situation and it gave me some peace of mind. 

Some Good News (ish): My blood that was drawn that same day of my 12 week ultrasound was the first time my liver enzyme levels were within a normal human range since before I got sick in 2020! Like in the 30s. That's huge news! All other blood tests have been good, potassium levels are staying up, and everything else good. However, why now? Why is pregnancy making my levels go down? That got me thinking. Is the baby's liver filtering out my toxins and overworking it? Will the baby be born with a bad liver too? Is this even on the doctors' radar of thinking? Pretty much every time I see MFM, they say, "We don't really know what's going to happen. There aren't that many pregnant women with end liver failure..." My liver failure is an anomaly and now being a pregnant person with chronic unexplained liver failure is my anomaly. People ask me how I continue living through my days with everything that I have had to go through and honestly, I just say, "It's not in my control so why worry about it? There is nothing I can do to change anything. I take it one day at a time." I think I have learned that in grief and it just rolls over into all other aspects of my personal life now. Why worry? I can't predict the outcome or change it. It's not up to me. 

Second Trimester

I recently got back from my visit to the University of Utah. I was shocked first thing in the morning at my 9:30am ultrasound to find out it wasn't my liver they were looking at. The tech said, "So you know why you are here? To check for a splenic aneurysm?" I was like...."Uh, I thought you were looking at my liver?" Ha! Turns out I was supposed to do both but her job was to get a very thorough look at my splenic artery to see if I had any aneurysms because I guess that is a risk when you have chronic liver failure and my hepatologist didn't want me to go undiagnosed with all the increased blood volume from pregnancy. I do not have one currently. Then, I was off to get the EGD at 10:30am. The upper endoscopy was dual-purpose. They wanted to check for any bleeding varices which would be banded and then also see how my intestines are healing from my Celiac disease. I was welcomed by a very enthusiastic team who, you guessed it, was all blown away by my medical history and just as intrigued to do an EGD on a pregnant lady. Doctors talked about whether or not to do certain sedation, how to make sure they had all their bases covered for liability, etc. - whilst I was laying in the bed! If that doesn't make you nervous, I don't know what would. They had a nurse from the NICU come down and find heart sounds before and after the procedure to check on baby and really the whole thing was done very fast. Results about the varices were instant and they said they were unchanged since my EGD last year. Nothing to be concerned about. 

My follow-up visit with the hepatologist the next morning was pretty uneventful. He was happy that my condition hadn't worsened from his standpoint and that I still seemed to be ok. I asked about the likelihood that the baby was filtering my toxins and in turn, causing damage and he assured me that wasn't happening. Another thought had been brought to my attention that potentially the baby's blood/stem cells could be helping ME to heal. He said there are theories that have shown that women with chronic illnesses benefited and/or didn't have symptoms of their ailments while they were pregnant due to the baby's blood helping out mom, but it doesn't affect the baby at all. So, if there is any good news out of all of this, maybe it's that this baby is helping to heal me. It could be that my levels get worse again as soon as the baby is born, but we'll just have to wait and see. 

The End Game

I still need to get the ultrasound of my liver done. Until I hear them say, your liver is still shot, I always have a hard time believing it. However, considering how bad I have been feeling, I was forced to realize that I really am not... well. My medicine really does keep me alive, mentally here, and functional on a daily basis. I hate to admit it and I've never been one to accept defeat or admit to needing help, but I'm having to learn that the fact of the matter is, I need help. And, adding a new baby into the mix is going to be hard. The debate is still out there of whether I made the right choice or not to have a baby but like I said, there is nothing I can do now. I don't regret this baby. I will love him with my whole heart like I do all my babies, but I know it will have its struggles being post-partum with two wild boys, a newborn, and a chronic illness. I made that cake.... just wish I could eat it too (Bad Celiac joke. I could if it was GF. 😆) Yes, Baby Cunningham #4 is in fact, another boy. 

I will hit third trimester mid-August and have my next visit in UT in September. They want to see me once before baby comes and then once soon after. What this pregnancy has in store for me next, I don't know. I have felt less tired and way less nauseous the last few weeks, so I think I'm done with that. I know there is talk of taking the baby as early as 37 weeks if I get too swollen because they don't want to risk anything, but the goal is to keep him in as long as we can but will for sure be having a c-section since I have had 2 with the last two boys and doing a VBAC with varices and portal hypertension could be... well, fatal, honestly. It could cause bleeding. Anyway, as always, I appreciate prayer. Now that you know more specifically what has been going on, hopefully, this helps. And if you are just here to catch up and look out for me, I appreciate you. I feel the prayer and the love from all of those close to me. Thank you. 🙏