Sepsis.

I’m sitting at the computer, not exactly excited to tell my story but knowing it has to be done. This post is more for those of you with auto-immune hepatitis that read this blog, or if you are a family member or friend of someone who has it. The lesson of this blog: pay attention to the symptoms and signs.

March 7, Thursday morning before 7am I texted Kevin and told him I had a stomach bug, along with a low-grade fever and major chills. He wanted me to call my nurse transplant coordinator, but I refused. I told him it wasn’t even 8am yet, and that it was just a stomach bug and I would rather just give it 24 hours to exit my system in the comfort of my own home. He got off work, came in the house, and had me back in the car on the way to get labs drawn before my appointment he had set up at 11am for me. I was beyond irritated, when you have a stomach bug and are experiencing things from both ends, you literally want nothing more than to be at home.

Fast forward to the APRN seeing me, and then calling in my head liver doctor because they truly did not know what was going on. I’ll admit it, at this point I was pretty furious. I kept thinking “You don’t know what’s going on because it’s just a stomach bug! Now let me go home and be miserable in peace!” But instead Dr. D says, “I want to air on the side of caution and go ahead and admit you for just a night, so we can monitor and do some more tests.” Yall, I was angry. I didn’t want to stay one night, I wanted to go home and lay in my own bed with my dog and be sick all I wanted to in the peace and privacy of my own home. They initially were thinking that because they lowered my steroid dosage so much, that my body couldn’t keep up with making its own. Then they wondered if the high tacrolimus levels (a medicine I take) in my body had something to do with it. Meanwhile, I was not happy because it was just a stomach bug.

Thursday afternoon and night passed with little to complain about. My fever didn’t come back, I was still experiencing nausea, and I still was having stomach issues. But all of that was minor, from a stomach bug, and I could’ve suffered through that at home easily. Friday morning, I woke up determined to get out of the hospital. The whole time I had been there I had no issues whatsoever, and I was beyond ready. Then, literally my whole world turned on me. My body started shaking. When I say shaking, I do not mean little shivers, my legs, arms, abdomen, everything was shaking uncontrollably. I was so cold, I had goosebumps covering me head to foot, and somehow, I knew that the uncontrollable shaking was not because I was so cold. My chest started to hurt, like there was this pressure pushing inward on my chest magnifying everything else going on. I had a piercing headache, that made the entire front of my forehead feel like it was actually going to explode. Then I started throwing up. I couldn’t breathe. I couldn’t take a deep breath, all I could do was hyperventilate and cry and try not to choke on vomit. Kevin called my nurse in, and as it turns out the team of doctors were all outside my door discussing how they couldn’t find the source of what was going on and that they felt comfortable sending me home. WRONG. It’s just like my AIH to go and pull some stupid crap like this, when I was so close to getting out of that hospital.

I call it my episode. It was by far, the worst pain I have ever had to go through in my entire life. The tech had taken my temperature right before the episode started 98.6, then at the start of this episode it was 97.4, and then not five minutes later my temperature rested at 102. They had to attempt to get blood, they ordered an EKG. I remember the pain, and I remember telling Kevin I couldn’t do this anymore. I remember thinking that whatever this was, I was not strong enough to face it and get through it. Obviously, I wasn’t released from the hospital.

This is where I stop everything to say how thankful I am for nurses. My nurse, the charge nurse and the APRN from the transplant clinic never left my side until they were able to get my body to calm down and get some medicine in me to help and allow me to sleep for a little bit. Doctors don’t know what to do in situations like this, they wanted to go see the other patients they hadn’t rounded on yet and come back to me. (Yes, I have a little bitterness still for this, but always always thankful for those wonderful nurses.)

I had an infection, that went to my blood. As of that Friday, if I got a call for a liver transplant I couldn't accept it. My episode was because I had sepsis. Now, here is the part where I eat my own words and admit it was not just a stomach bug. I am very thankful Kevin took me in when he did, because I do not think I would have been able to get through that episode without all those people surrounding me. I am not going to get specific about what bacteria caused the infection, because I don’t 100% understand it yet. But we think it started as a UTI that didn’t have any symptoms.

I was in the hospital for almost a week. I know the doctors got sick of me. Once that calmed down and I started receiving antibiotics, I started retaining fluid like crazy. I gained 20 pounds of fluid in the six days that I was there. That led to the issues of not being able to sit up, lay down, walk around, or get comfortable at all. My back hurt so bad that when I tried to lay down or move it would take my breath away and make me nauseous.

I spent my birthday at UAMS this year. I had a paracentesis done that morning, which is supposed to help drain fluid off of your abdomen. They didn’t get that much out of the one spot she tried, and honestly wish she would have tried a little longer or in a different place to give me some relief quicker. I had a PICC line started that would be used for my IV antibiotics I would receive when they finally sent me home.

So, the day after my birthday I got sent home, got to see my dog, and got to struggle with the rest of this recuperating in my own home. Kevin gives me the IV antibiotics once a day, and I have a home health nurse who comes out and draws labs and changes the dressing on my PICC line. I have slept most days and nights. I am worn out and have to remind myself to eat because I simply want to sleep. The past week at home has been everything I needed, with my mom and sister coming to see me, and with my fur baby never leaving my side.  Hopefully I will be able to finish these antibiotics and nothing more will need to be done, and I can once again be in a place where I can accept a liver if I get the call. I am hoping that the infection in my blood is gone, and we will be able to continue with the plan of trying to make sure this type of bacteria cannot do this again. So, we will be going in for surgery soon to get rid of the kidney stones floating around in there, and hope that reduces the chance for this bacteria to show up again.

Moral of this story? Pay attention to your body, and don’t dismiss little things. If you have AIH or a compromised immune system, little things to normal people are always big things for us. Talk to your doctor, make sure you are on top of things, and don’t ever dismiss something just because that’s what you convinced yourself it was. It is always better to be safe than sorry. And also, never let anyone try and tell you what you are experiencing or not experiencing. Those symptoms are yours, and yours alone. You can't control them, and only you know how your body feels. So screw someone else's opinion of how you feel. I believe you. 

Sending my love.
Ali