It seems like every day I hear of someone being newly diagnosed with an autoimmune disease. Sometimes it is an acquaintance on facebook, other times it is a friend, but it happens so often any more!
Today seems like an appropriate day to write about this. I am having one of my rough stretches with my disease and have had a lot less energy than I would like to admit. Anyone who knows me knows that I don't slow down willingly, and would rather spend the day doing rather than recuperating.
This has been, and still is a major adjustment in my life. Learning what I can and cant do. How to listen to my body and how I feel rather than pushing through like I have always done. Realizing I have very real limits to my strength and that it is ok that I am not able to do it all.
If I keep saying it I will believe it eventually, right? Right?!
I was diagnosed with Autoimmune Hepatitis in February 2018 after a trip to Puerto Rico. It is not something contagious, I can't pass it on to you, and I didn't "catch" it. It is just simply that something triggered my immune system to start attacking my liver.
I very rapidly became sick and ended up in the hospital. Because of the timing my doctors believed that it was something that I had picked up while on vacation. As they tested and began treating for nearly everything under the sun, I just kept getting worse. After a week in the hospital they discharged me with what they figured was Autoimmune Hepatitis and told me that I needed to get blood draws daily to make sure that I was not getting any worse.
My awesome mother-in-law came up to watch the kids while I was in the hospital. Unfortunately Austin had just gone out on his own and started his business and he had to keep working his job in California to make sure that we were able to keep up our insurance and be able to pay our bills. I can't even imagine how rough that was on him to be away!!!
I came home and was pretty much unable to leave my bed except to wander out to get a small bite to eat or use the bathroom. It was scary and I couldn't believe how weak I was. The next morning I decided I really wanted to take a shower because I just felt gross and wanted to shave my legs.
I didn't even make it that far. I washed my hair and got so tired I decided I needed to get out and lay down for a while. I barely made it out of the shower and wrapped myself in a towel when I felt like I was going to pass out if I didn't lay down NOW. So I laid on my bathroom floor (which was TINY) and "cried" without actually crying, because I was even too tired for actual tears. Eventually I was able to crawl slowly to my bed where my phone was and call our daughter Eliza on our "Echo" to grab me a protein drink and bring it in.
I eventually got dressed and took another nap before Jill drove me into town to get my blood draw. I got a call that afternoon saying they needed to repeat my draw at the hospital because my liver enzymes were so high that the machine at the Instacare couldn’t read them . . . Crap.
I went in, again, and when they got the results I was headed straight up to a hospital a little further away that specialized in livers and transplants.
They let me be direct admitted instead of the usual mandatory trip through the ER which I was so grateful for. I was pretty much all yellow by then and was in fulminate liver failure. They had me on a high dose of steroids to try and get my liver to calm down. They wanted to confirm that it was in fact AIH that I had and ordered a liver biopsy where they take a little sample of your liver to look at the structure to determine a little better what is going on.
I was already pretty freaked out about the process when they informed me that they would actually have to go through the large vein in my neck and thread it down to grab a sample because my liver wasn't making all the good stuff that you need for your blood to clot correctly. Meaning I ran the risk of a more serious bleed if they did it the traditional way.
I freaked out way more than I would like to admit. I would love to say I took It like a champ, but I was on the verge of tears and hyperventilating the whole time they were getting me ready. I straight up told them I was terrified and give me whatever they could to make me less aware of what was going on! Luckily whatever they gave me did the trick and I was happily unaware of what was going on. Not my finest moment.
It was the weekend and they were going to have to wait until Monday possibly to have the results in. They were trying to rush things a little and the Dr came in to talk to me on Saturday or Sunday instead. I am not quite sure what day it was. My stomach is literally sick even thinking about this moment again. He came in and told me that it was indeed AIH and that I wasn’t getting any better. He advised me that we would be starting paperwork on Monday to get on the list for a liver transplant. I laughed because I couldn’t believe that things had become so serious so quickly. It was all very unbelievable.
He said that they Could get me fast tracked on all of the procedures needed to be able to get me on the list because I was an inpatient, and I wasn’t getting any better despite treatment. The man did not have very good bedside manner and was not my preferred Dr. on the team I had. I was alone, trying to understand what this all meant in the short an long term, and he just kinda said, “any questions” and left.
I didn’t know what to do or who to tell, because it was going to be a blow to everyone I loved too. My mom was on her way up to the hospital to see me anyway, so I figured I would talk to her first. When she got there I very nervously started, but was graciously saved by one of the “nice“ Dr.s on my team before I could get to far. It broke my heart to watch her get the bad news I already knew.
I decided to keep the news pretty close to my chest and only tell those that I thought needed to know until we knew all the details about what was going on. I asked for prayers and fasting, and let me tell you thy work. I have never felt the power that prayer can have until that moment. It was amazing and hands forever changed my outlook on the sentiment, “I will pray for you”.
Come Monday I started to get a little better. They stalled on getting me started on the transplant tests, and I was just all together confused about what the plan of attack was. I think that is what frustrated me the most in the whole ordeal of getting my diagnosis and getting out of the hospital. The not knowing what was going on. Give me a plan to stick to and I can handle a LOT!
Very long story shortened, I started to improve and they decided to hold off on the transplant as long as my liver enzyme numbers were trending down. I was able to be discharged and return home to pathetically low energy levels. I was helped out by my loving neighbors with food, and support for as long as I needed it. It took me months to feel human again, but I am getting better.
I still hurt everywhere much of the time and have to stay in bed most of the day sometimes. It is a drastic change from what I used to do. I don’t ever want people to think that I have it all together, I am very far from that. Behind the social media posts you don’t see the 3 hour long nap I had to take after the kids leave for school. Nearly throwing up my meal because my body decided that it will feel sick if I eat anything today. The messy kitchen with a sink full of dishes and laundry piles for days. I have to celebrate the little things in my day. :)
It is not easy coming to terms with my disease. That is going to be a lifelong battle. But when I have my good days I am going to celebrate, and when I have my bad days, weeks, and months, I will hunker down and get through waiting for the next bright spot. So If you have made it this far thank you for listening. :) We are all fighting battles, stay strong!