Liver Biopsy Results and Feeling Angry

Not good. So not good.

So my hepatologist and I were waiting for specialty staining to be completed on my liver biopsy done on 5/13. Preliminary results showed Autoimmune Hepatitis, which along with my clinical signs and symptoms landed me my diagnosis. I received a copy of my pathology results because my hospital has a nifty patient portal.

I had an original liver biopsy done 4/16, when I had my gallbladder removed laparoscopically. I had received a copy of those pathology results from my surgeon and brought that to my new GI, and then to my hepatologist. The results were limited to two sentences, noticing severe inflammation, but that was about it. The report I received today, is a massive paragraph. Previously, we thought that I had mild fibrosis, and moderate hepatitis (inflammation of the liver).

It's way worse then I imagined, but want to wait until I speak to my hepatologist next Tuesday about it. I also had blood work done yesterday, and I'm anxious to see how my LFTs have been, now that I tapered down to 20mgs of prednisone. Things that worry me: low grade fever is still hanging around, my urine is getting darker, I have lost my appetite again, and so sore.  My body is in the midst of a war at this point... I don't necessarily know if I am imagining my liver get worse, or if  I'm being overly aware of my symptoms. It's also been difficult since my Crohn's is really misbehaving, and some of the symptoms overlap, like loss of appetite, pain and fever. The urine thing has me a bit worried, for it hasn't been this dark since my hospital stay. So gross, I realize, but in terms of liver and gastro diseases, I'm used to being overly aware of what my body excretes.

I'm 25 years old. Seeing phrases like severe hepatitis and cell necrosis are not exactly comforting. Again, besides feeling a bit deflated, I also feel quite angry. I guess I'm fully at Stage 2 of Grief: Anger. This is a pretty decent explanation I found:
-As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family.  Rationally, we know the person is not to be blamed. We feel guilty for being angry, and this makes us more angry.

I haven't reached Stage 3 yet, which is Bargaining. I'm not done being angry yet.

Counting geese instead of sheep

Started off today with four hours of sleep. Next week when I see my hepatologist/GI team, I'm going to ask to be be put back on a real sleeping med. From my TBI, I have disordered sleeping, and do not naturally go into the same sleep cycles as most people. I had tried Ambien, Sonata, Lunesta, trazodone, gabepentin, and Soma all at different times. I found that while Ambien worked best, I would sleepwalk/sleep eat/sleep try to leave my house. The others worked miserably and had even more side effects. For the past few years, I've been taking Remeron at night, and it's been fantastic until the past week or so. Now, I feel lucky to get four hours of sleep. When I was previously on long term Prednisone, and even on Entocort (another steroid), I suffered from terrible insomnia. It's gotten to the point I cannot function at work, and I know that, temporarily I need help sleeping.

I also managed to hit and kill a goose crossing the street on my way into work, just realized how thin my hair has gotten, nausea has come out in full force, new bruises covering my body, and finally if all that wasn't enough, I have a nasty sinus infection on top of everything else. Oh and I won't have hot water for another couple of days (my hot water heater broke on Friday).

Hopefully the week only goes up from here. Going for my biweekly blood work tomorrow, and should have the results by Friday. Hopefully my LFTs have come down far enough that I can go back on Humira, and taper further off the prednisone. I also am semi-excited to get my hair done tomorrow night, and to try to do something with it to hide the hair loss. I really should call my docs about this infection, but want to try to hold off to see if I can fight it on my own.

My victory of the day was getting to the gym before work. Since I was up at the crack of dawn, and bored I went to the gym, and managed to somehow run three miles, and do a modified leg day. I probably pushed my body way too hard but it felt so good, and therapeutic. I may pay for it tomorrow but I needed the hour workout to clear my mind.  Here's to hoping that tomorrow is way better than today.

Woke up yesterday feeling pretty crappy. Severely swollen lymph nodes, mild fever, sore throat, achey and out of sorts. Looks like I need to give my GI a call tomorrow morning, since he was already concerned that after only a week on azathioprine my blood tests came back funky. My hepatologist did not order the TPMT blood test (which shows your body's ability to metabolize azathioprine/6mp. My GI has written me a script to get it done, along with a CBC, and of course my LFTs. I was planning to hold off until next weekend to go, but after this will be moving that up to hopefully Tuesday. 

It's never ending. I just want a break. I want my life back. 

How are you?

I feel like a monster. Mentally the past couple of weeks have taken a toll on me. I am so incredibly tired of people asking how I am, and how I am feeling. I am sick of having to lie, or even worse, my most common reply, “hanging in there”. I want to say I feel like f-ing crap. I want to say, I feel lonely, I feel agitated and frustrated. I want to say I feel pissed as shit today.

I’m tired of going into work with a smile on my face every day, pretending to hold on to some semblance of normality. I am also beyond tired of hearing- “You poor thing”, “You’re so young!”, “It’s so sad”. One of my absolute favorites is “Haven’t you’ve been through enough?”

I get that I should be thankful that people genuinely care and are concerned. I am just so frustrated. I am frustrated because, yes, I am young. Yes, I had a traumatic brain injury ten years ago, was diagnosed with Crohn’s Disease two years ago, and now diagnosed with Autoimmune Hepatitis. Yes, it is sad, because my health has been ripped away from me, my foundation crumbling, while I should be enjoying life. Instead I am worried about next week’s blood work. I am worried that I have run out of treatment options for my Crohn’s, and that my body is no longer responding to medication. I am worried that I may never be able to have children.  I am worried that within ten years, there is a strong likelihood I will need a liver transplant. I am worried because my joints are already damaged from chronic inflammation, and I am only 25. With all these worries, it is hard to just answer “I am okay.”

With the feeling of worry, also comes the feeling of being pissed. Why should I be worrying about things only those in their 70s worry about? Why should I have more worries about my body than my grandparents in their 80s do? I am pissed as shit that my hepatitis and scaring of my liver is worse than those people who have been alcoholics for fifty years, or those that have viral hepatitis from engaging in high risk activities. I ran half marathons, ate paleo, and totally organic. I indulged in the occasional bottle of wine, but never used an illicit drug. Being a public health fanatic, I have always had safe, protected sex. How fair is it that my liver is in worse shape than many people who have Hepatitis C or Hepatitis B or were raging alcoholics for decades? How is it fair that crack addicts and heroin junkies have less health issues than I do? I have worked my ass off to stay healthy, and to live a productive life, yet at this point, I can’t seem to help myself.

I haven’t figured out the right answer to “How are you?” I may never. For now though, I am going to be honest. If others cannot handle my response, or it makes them feel uncomfortable, so be it.

Hepatitis?!

According to my great friends at the Mayo Clinic, Autoimmune Hepatitis is

"inflammation in your liver that occurs when your body's immune system attacks your liver. Although the cause of autoimmune hepatitis isn't entirely clear, some diseases, toxins and drugs may trigger autoimmune hepatitis in susceptible people, especially women.

Untreated autoimmune hepatitis can lead to scarring of the liver (cirrhosis) and eventually to liver failure. When diagnosed and treated early, however, autoimmune hepatitis often can be controlled with drugs that suppress the immune system.

A liver transplant may be an option when autoimmune hepatitis doesn't respond to drug treatments or when liver disease is advanced."

What AIH is NOT...

- It is not viral

- It is not labeled A, B or C

-It is not communicable... I did not get this from someone, nor can I give it to anyone

-curable

AIH is most common in women, those with other autoimmune conditions, and younger people. Lucky for me, I get not just one autoimmune disease, but now two. AIH is more commonly seen in those with Ulcerative Colitis over those with Crohn's, but since I love being an anomaly, it fits. Speaking of fantastic news... I also received the results of the biopsies from my colonoscopy on May 8th. Previously, my Crohn's was strictly located in my terminal ileum. Like in my previous scopes, my doctor took 20 plus biopsies from my ileum through rectum. Unlike in other scopes, every single specimen was abnormal, including specimens from my colon. I now have ileocolonic disease, and it is spreading.

Fortunately similar drugs are used to treat both AIH and Crohn's. Treatment for AIH is limited to prednisone and Azathioprine. Crohn's has many more treatment options for inflammation (even if I have exhausted many of them). I have been off of Humira for almost two months, after stopping it before my gallbladder surgery. Right now, I am taking strictly prednisone and azathioprine waiting for my LFTs to normalize. I will be starting to taper the Prednisone, and may have to adjust the azathioprine to make up for it. I also will hopefully be able to start back on Humira once my LFTs stabilize. For the bare minimum, I will have to take azathioprine for two years, for the AIH. I am thrilled that both of my doctors hate prednisone, and already have a plan for tapering. I do not do well whatsoever on prednisone, mentally or physically and I am happy that we are on the same page for that. I also get to follow up with my doctors every 3-4 weeks, along with concurring blood work.

When it rains, it pours. Lucky for me, I put on my wellies and jump in...

always a puzzle

Tuesday morning (May 13th), I still had yet to hear from the hospital where I was going to get my liver biopsy done. I had called before I left for work, but the same day surgery floor was still adjusting schedules, and that I would receive a call back within an hour or so. I threw an overnight bag in my car, and headed into work. Fifteen minutes after arriving to work, I then received a phone call that I could be fit in for a biopsy, and asked how soon I could make it to the hospital. I also was struggling to coordinate times with my mom, seeing that I would need a ride home from the hospital after the procedure. Also adding to the complexity, is that the facility is mid-way between my house, and my parents house (roughly an hour drive for each of us).

The plan was for her to bring my grandmother with her to the hospital, so my car would not be left there overnight. Once I arrived, things progressed pretty quickly, and my doctor had also ordered even more blood work before the biopsy. I was brought down to interventional radiology, pumped full of proposal, and was sent to recovery. The entire procedure took less then five minutes, and was virtually painless.

I was sent back up to recovery, where I would remain laying down for four hours before being discharged. Unfortunately, it wasn't that simple. My blood work which was performed while I was getting the biopsy, was "alarming". My LFTs were close to 900, my bilirubin was increased, as well as many other markers for severe liver dysfunction. My doctor wanted to admit me overnight for observation, as well as to run more blood work.

Wednesday morning, I had over twenty tubes of blood drawn. My mother had left the night before, with my grandmother, but was back with me by 9am. At this point, we were waiting for my hepatologist to round. I had the pleasure of explaining my story/ prior medical history to an intern and resident, and within the hour my hepatologist came by. He had just come from looking at my biopsies with the pathologist. Preliminary results showed what he expected, Autoimmune Hepatitis, with moderate to severe fibrosis, and stage 3 liver disease.

It was decided to start a concurring treatment of Prednisone along with Azathioprine, which is the most common, and basically only option for treatment of AIH.

AIH

So, if my body didn't hate myself enough as it is, I've been diagnosed with another autoimmune disease. I have developed Autoimmune Hepatits, which is more rare then Crohn's, but is more common in those with pre-existing autoimmune diseases. I'm still trying to wrap my head around the activities of the past few days, including a lovely mini vacation (barf) in the hospital.

I'm exhausted and my body is rebelling, especially since I started two heavy duty medications to get this under control. Don't worry I'll give a full play by play once I'm feeling a bit better.

Thanks for all your love, support and concern during this time. I can never say enough thanks, and how much I appreciate it.

waiting game

so my first set of bloodwork from Friday has come back. I'm waiting for my copy of results to be made available online. I did receive a phone call from my hepatologist, wanting me to come in for a liver biopsy ASAP... As in tomorrow or Wednesday. If I can't get put on the outpatient schedule, I will be admitted for "observation", and sent for s a biopsy that way.

I'm itching to see what my LFTs were to push for this. I had two biopsies removed during my gallbladder surgery, and on Friday when I met with the hepatologist he was going to try acquire the slides/ any additional info. Apparently there isn't time to wait and try to see if the other hospital still has them.

I get all of my bloodwork done through LabCorp, which has a nifty tool called Patient Beacon. If available in your state, you can access all of your lab tests/results done through LabCorp, within 24-48 hours of your doctor reviewing the results. Since my doctor's phone call, I have been checking incessantly. I wish I had asked my doctor what the actual number results were, but at the time, I was thrown off. Working in communicable disease, I deal with laboratory testing/ tests every single day. I know that in this age of Dr.Google, that people can be obsessive with things they find online. Part of me just wants to be an informed patient, aware of what is happening to my body, and to be prepared when decisions have to be made.

A nurse from the hospital just called, and gave me a number to call tomorrow morning to see if I'm on the procedure list. Until then, I'm hoping to keep my anxiety at bay, and relax the best I can.

It's been a crazy week. Got blood work done last Saturday morning, and by Monday afternoon received a frantic call from my GI. He called and was extremely concerned about my LFTs. In just about a month, my AST/ALT levels jumped from the mid 200s to the 600s. We were expecting them to normalize after my gallbladder removal. I had initially scheduled a hepatologist appointment for early July (the first available), but my GI said he would call and get my appointment pushed up to next week.

Thursday, arrived at the same day surgery center. My GI recently switched facilities, and it was his first day doing scopes at his new hospital/surgi center. Things were a bit hectic. After waiting 30 minutes after check in, a nurse gave me a clean catch container for a urine specimen. I managed to collect a specimen, yet could not find a nurse to give my container too. My GI came out to talk and immediately noticed my urine container, and was quite alarmed with my sample. He called the hepatologist on his personal cell, and managed to get me an appointment the next day, Friday. The colonoscopy went well.

My new hepatologist is concerned. I immediately got blood drawn for repeat LFTs, and another test. I was to immediately start a 24 hr urine specimen collection, and to also get about 30 different blood tests today. He was also going to try to obtain my liver biopsies if the hospital still had them, as well as full pathology notes. Best case scenario, is that it is a viral infection such as Epstein-Barr manifesting in my liver. Worst case is autoimmune hepatitis or Wilson's disease. I have been tested a few times for each viral hepatitis, and have been vaccinated for A and B, so those are off the table.

Working in infectious disease epidemiology, I have a decent understanding of viral hepatitis. I am used to seeing multiple lab test values, and LFTs for those with chronic, untreated hepatitis and my LFTs are much worse. I'm just hoping that within a couple of days we get results of my blood work and figure what is causing my liver to fail.

Chopped Liver

I'm miserable tonight. Maybe it's due to the fact that it's the weekend of the Broad Street Run in Philly, which I was supposed to run. It's the second consecutive run that got cancelled when I found out I was getting surgery. Meeting with my surgeon on Wednesday, she was adamant about waiting at least another 2 weeks before attempting any type of "mileage". She reiterated the point by showing me pictures of herniated abdominal wall from people who rushed recovery.

After meeting with the surgeon Wednesday, I followed up with my GI today. We went over the results of my liver biopsies that they took during my gallbladder surgery. I am once again a medical anomaly, and have a form of liver disease typically seen in obese 50-65 year old women. I do not fit into any of the risk factors, and really are unsure of what has caused my liver to progress this far in disease, at my age. He referred me to a great hepatologist, who can hopefully pinpoint why my liver has become diseased, and how we can treat whatever is going on. I was originally diagnosed with Nonalcoholic Fatty Liver Disease. This progressed first to Nonalcoholic Steatohepatitis, and now I have fibrosis. The fourth and final stage is the cirrhosis. It is extremely rare to have someone who is physically fit, under the age of forty with no history of diabetes, hypertension, viral hepatitis or rapid weight loss to develop fibrosis. I unfortunately am a rare case. At this point it does not look evident that it was drug induced, but it may be an extra-intestinal manifestation of the Crohn's.

I also have to go for yet another colonoscopy next week, which is always such a joy. My blood work has been funky lately, even with starting the Humira, and with everything else going on, he wants to do more biopsies.

I'm just cranky. It's not often I ask the question of "Why me?". At this point, the frustration of disease interfering with normal activities has gotten to me. My wine, and more importantly, running have been taking from me.  I was surviving quite well when the pleasure of enjoying food was taken from me, but subtracting running and wine from my life together has made me a bit miserable. I don't even drink much, but it's the proverbial icing on the cake. Since my TBI, normal life functions, have been ripped from me. Memories, cognitive ability, coordination, walking, sleeping, have all been taken away. I have gotten parts of each function back, but having these innate human functions taken away has taken a toll on me. I know that wine, food, and running are all luxuries, but taking away my simplest of pleasures, my releases, my stress relievers, my coping strategies for dealing with the more substantial losses, I am, for lack of a better word, cranky. I'm working on staying optimistic, adding in some walking, and trying to remind myself that it's all for the best for my body.