Twenty Weeks

It's been twenty weeks, since I was diagnosed with Autoimmune Hepatitis. I have graduated to monthly blood work, and going two months between doctors' appointments. Initially, I responded fantastically to Prednsione and azathiorpine. I began to taper off prednisone, and have yet to normalize my LFTs. I was switched to Myfortic (similar to CellCept), a month and a half ago, while maintaining 10mg of Prednsione. Bloodwork from the beginning of September was unfortunately more abnormal than it has been, with my LFTs continuing to rise. I get repeat blood work the first week of October, and follow up with my specialists the second week. 

More than anything, I'm frustrated. I work my ass off, am compliant with my meds, eating healthy, taking care of my body, and it doesn't seem to be helping. I am maintaining my career, working out, trying to lead a normal life. I could be sitting at home, living off the "system". Instead, I wake up each morning, no matter how tired I am, and go to work. I know life isn't a game, that there are things out of my control. I also don't want people to feel bad or pity me. I try so hard to believe that God only gives us what we can handle. It's just that we all have a breaking point, and I've been skirting around mine a bit too frequently for my liking. 

There is one more medication option that I have left, before the dreaded transplant comes into play. It's disappointing that I am not responding well to another medication, and that I'm close to exhausting my options, but I will try my best to stay positive. 

Life.

Work has been extremely busy the last few weeks, so much so, I've noticed it's taken a big toll on my health. Currently on day 3 of a lovely sinus infection/bronchitis. I figured it was only time before I got sick, being on three immunosuppressants. This is my first infection since starting the lovely combo in May, so I guess I've done pretty well for myself up until now.

Sometimes it is hard for me to remember to take it easy. I try so hard for my illnesses to not interfere with my daily life, that I sometimes forget how fragile my body is. I am guilty of taking my health for granted at some points. Even with having severe Crohn's, and severe hepatitis, overall, I have been fortunate. I have yet to require major surgery, and my hospital stays have been brief. I've made it four months without any major infection, and I feel so thankful I've made it this far.

The whole idea of taking it easy has always been difficult for me, but I will continue to work on it. To remember to take a break every now and again, and to give my body the rest and care it deserves.

Myfortic

Or as I am now calling it, my kind of hell.  Day 9, and I still feel like complete garbage. Nausea, vomiting and exhaustion, oh my. I wasn't expecting the switch to take so much out of me, or to react so miserably to the new med. I've been doing my best to "tough it out". If I fail Myfortic, there is only one medication option left to try to control my AIH.

Humira and prednisone have been my lifesavers, even if now, my Crohn's is rebelling. I have started with pain in my ileum again, and now pain in my descending colon, which was inflamed during previous colonoscopies. Another big concern, is that I'm now going into 4 months on prednisone. My bones are not thrilled, nor are my docs. I will be on prednisone until at least October, making close to six months on a substantial dose. In. October, when we reevaluate my treatment plan, I will also be having a DEXA scan. It's also scary to think about what will happen to my Crohn's, when the prednisone is discontinued. It definitely has been helping to keep thing under control, even if I am currently having breakthrough.

For now, I hope and pray that the Myfortic works, and works well. Fingers crossed.

balancing

This past Wednesday, I met with my liver and GI docs. My LFTs refuse to normalize, and are still elevated. I was already on the highest dose of azathioprine that I could be on, so it was decided to switch me to another immunosuppressant, Myfortic. It is similar to CellCept, a more commonly used immunosuppressant, but is coated, and is easier (hopefully) on the stomach. Myfortic isn't as safe as a drug as Azathioprine, and comes with more side effects. Our goal is to get my LFTs normal, and maintain normal while getting me off the prednisone.

Luckily, the Crohn's is behaving, for the most part. It will be interesting to see what happens with the switch, as azathioprine is commonly used to treat Crohn's, while Myfortic/CellCept haven't. It will be interesting to see what role, if any that azathioprine has had with controlling my Crohn's. Hopefully for my sake, it has played a minimal role, so that nothing changes with stopping it. We are also nervous for when I decrease the prednisone, as that most certainly has had a therapeutic effect, on both Crohns and AIH.

My life at this point is a balancing act. Trying to stay upright, on both feet has been a struggle, and not without consequences. I have traded away my life in order to stay healthy.

Normalcy

Just hit 3 full months on prednisone. Have a minimum of 3 more months on it, and that's only if my LFTs stabilize. It will much likely be longer than that. I'm slowly starting to see the full effects of my total immunosuppression. Cuts, scrapes, blisters, all take so much longer to heal. I used to heal wonderfully, with few scars. Now, my body is riddled with small scars, from what previously would of healed perfectly in a couple of days.

I've gained ten pounds. I'm in amazement that even with maintaining 10mg of prednisone, I have only gained ten pounds. While I'm trying my best to keep the weight gain at a minimum, I'm happy that so far, so good. It is a constant uphill battle with prednisone, to keep the weight off. Previously, and again in this round, much of it is water weight. I feel so puffy and bloated.

The scary part of this new normal, is that I've yet to hit true remission. I had bloodwork done last week, and will be getting the results Wednesday. As of two weeks ago, my LFTs were still climbing, even with being on the maximum dose of azathioprine, and 10mgs of prednisone. I think a part of me is afraid of the long term implications. I hate that there is no end in sight of being on the prednisone. I'm worried about my bone health, and well overall health stemming from long term use. I'm anxious to see why my blood counts are at, with my previous blood work showing substantially lower than average white blood cell counts.

I want remission. I know I will never be med free in my life, (unless they find a cure), but I want to reach a point where I don't have to worry about bone loss. Where I don't have to worry about getting sick constantly, where I can start to think about getting pregnant, where I am not on three different types of drugs that all independently shut down my body's immune response, not to mention being on three at the same time.

This new normal, while slowly getting to be familiar, is not okay. I'm not content. I hate feeling so run down physically that I barely have time or energy to eat dinner when I get home from work. I hate how I feel, and am scared to death of the long term effects of these medications on my body. The fear alone is more than enough to hate this new normal.

Four

Last week marked my fourth hospital visit this year. I noticed changes in my urine, and felt out of it, and had an abnormal temp. Called my doctor early Monday morning in hopes of getting an office visit with him, but instead was politely told by the nurse to go to the ED, which is in the same healthcare system as my doc. My doc and the colleagues from his practice do daily rounds at that hospital, so with any visit, if need be, they can consult almost immediately.

Lucky for me, it's new resident season, and I had the joys of having a brand new shiny doctor, who confused autoimmune hepatitis with hepatitis C more than once. Don't get me wrong, I have many friends and colleagues that are physician, and typically have the utmost respect, but if you want to work in an ED, be sure to know the difference between viral and autoimmune diseases.

She ordered an ultrasound, for gallstones, even though I told her numerous times I had my gallbladder removed, and imaging done to ensure I had no stones in bile ducts previously. The ultrasound, showed an enlarged heterozygous liver, indicative of liver disease. No surprise there. She ordered only a basic hepatic panel and CBC and let me go after filling me 2000ml of fluid.

Unfortunately, I had missed the rounds of the liver team at this point, and was told that I was merely dehydrated and to follow up with my liver doc as scheduled, and get blood work again this week. My LFTs are still climbing back up, even with the increase of azathioprine. I'm anxious to see the results this week. I also was frustrated at her telling me that I need to drink more water. I have Crohn's disease. I can drink a gallon of water a day and still be dehydrated and it's so incredibly difficult to stay hydrated. I left upset, and frustrated and just done.

This incident is why I hate going to the ED/ the hospital. I spent over 8 hours in a gown in an uncomfortable bed, only to be told, follow up with your main doc. Back in March, while in severe pain, when my gallbladder wasn't functioning- I was told to follow up with my primary doc. I feel that having such a rare combo of diseases, or hell having either one, is typically way more complicated than what a typical ED doc can handle. It's why we see specialists in the first place. The ED is one of the worst places to get care for chronic diseases, yet any times we are forced to go there when our docs are not available. My friends and family sometimes insist for me to go when I don't feel well, or symptoms are amiss. I wish it was as simple as walking into the ED and having a medical problem solved, but unfortunately, it's rarely the case. It's frustrating, painful and wasteful in my opinion, and it really reiterates my dislike of rushing to the ED to get checked out.

Waiting

Lately I've been thinking more and more about dating. Sadly, almost every person I talk to, whether male or female has told me to not think about it right now- wait until you're healthy. 

I get that it's not something I should be focusing on. At the same time, I do not know when I will be healthy. To be realistic, I will never fit into the "perfectly healthy" category. I'm just so frustrated in general with the whole "wait until you're healthy" mentality. Wait until you're healthy to go back to school for your PhD. Wait until you're healthy to buy a house. Wait until you're healthy to go on vacation. Would the same people tell a cancer patient... Wait until you're healthy to live/enjoy your life? 

Having a chronic illness, or in my case, a couple, means that there may never be a "healthy enough" time. There is no cure, there is no "I Beat Crohn's" Medal of Honor, there is no " You're Crohn's free"(in most cases). 

I feel like the past two years of my life have been spent in a holding pattern, waiting until I'm healthy enough. I know it will be difficult, but with compromise, I think things will work. In terms of housing, I'm settling for a townhouse/condo, that can be easily rented out, if anything should happen. I have shelved my dreams of owning a cute little single family house for the time being, knowing that it will be difficult to keep up on, alone. I have also have compromised on my vacation plans, staying more locally, and buying travel insurance as needed. The only real area of my life that I haven't found the right balance of compromise on is dating. I'm not sure on what the right compromise is for it, but I do know that I'm not waiting until I'm "healthy" for anything else in life. 

The past week has been brutal. The increase of azathioprine has not helped whatsoever. My liver is ridiculously swollen, I've gained about 10 pounds in water weight, my fever is higher, I have lost my appetite and my urine is as dark as it was when I was admitted for liver failure two months ago. Figures it's a weekend, and cannot get in touch with my docs.

I just feel run down, but still function-able. I don't feel all that sick. I just know that inside my body is waging a war against itself. On Monday, I will get in touch with my liver doc. I had a few family members tell me to go to the ED, but frankly, I know I can wait the two days till Monday. I don't want to sit and be there for hours. They ultimately would have to consult with my liver doc/his partner who  also don't do rounds in the hospital on weekends. So I would most likely be admitted until they could track them down to do a consult. It's a hard place to be in. I know I'm in liver failure again. I'm not quite sure what the next step would be, since initially I responded so well to the treatment. I also live 45 minutes from the hospital(s) that both my GI/liver man are a part of. I have five hospitals that are much closer, not to mention cleaner, nicer and in better locations. It's a tough call. I don't feel like this is an emergency. I'm obviously surviving day to day. I will not let it go past Monday, or if something drastic changes, but I will try to enjoy my weekend as best as possible.

The past couple of days have been rough. I feel as if I am going through the motions. Get up, try to eat something so I don't throw my guts up by 8am. Get to work, struggle to find a comfortable position sitting, because my liver is so incredibly swollen, it hurts to sit for an extended period of time. Fight off nausea. Take a few phone calls, write a few emails, and try to stretch out the morning, before having to take another dose of medicine. Take second dose of meds, try to once again shove food down my throat before the nausea sets in. Avoid the lunch room, because smells make the nausea so much worse. Go back to my desk, struggle to find another comfortable position. Try to keep my eyes open. Do some more work, and rejoice when the clock hits 4pm. Get home, immediately change and lay down. Typically nap two hours. Try to find something to eat that doesn't upset my stomach. Read for an hour or so before bed, and then am asleep between 9-10pm each night.

It is SO incredibly difficult not to let illness overtake your life, but when you can barely make it through a day, the battle is almost over before it starts. 

Depending upon the next few weeks, I may try to see if I can work something out with my job, about working from home a day or two a week. I am hoping with the changes in medication that this will be completely unnecessary, but if my disease progresses, it may be one of the only choices I have left. I am hoping and praying and doing everything in my power, in order to aid in my recovery. What makes this difficult, is that in someways I am my own worst enemy. In order to ask for help, in order to ask for accomendations, in order to admit some form of defeat, in order to admit that I am not the person I once was, I have to overcome myself. I think the stark realization of the seriousness of my illnesses has been a slap in the face. I had such overwhelming success coming back from a severe traumatic brain injury, that I went in full force with my Crohn's diagnosis, being so incredibly confident, okay so albeit a bit cocky in that I had this battle in the bag. For the first couple of years, I did, and was even able to be medication free for a time. This most recent flare up and the additional diagnosis of AIH, has brought me back to reality, and shoved my cocky attitude in my face. I am not perfect. I am not a failure, and I cannot do everything alone. Which has been so incredibly difficult to admit. I hate asking for help. I hate feeling like a failure. 

The past three months have scared me. I now see that I cannot ignore my issues, and that even if I attempt to do the best job ever, that sometimes, life is out of my hands, out of my control. It has been one of the most incredibly difficult things I have had to do this far in life. I don't consider it admitting to defeat, but that I need help in going at this. It is going to be a long, life long battle, with sometimes no end in sight. I just know I cannot do this alone any longer. 

Got to visit my lovely liver team and GI doc today. The verdict is in- my liver function is failing again, and  things are getting serious. Bumping up my azathioprine to the highest dose, increasing my Humira to weekly and trying to stay on 10mg of Prednisone so I can at least hold on to some form on sanity through this.

My white (blood cell) counts were also abnormal, which is another thing to really keep an eye on as well. Could be from my autoimmune diseases, could be from the medications, either way, I'm much more prone to infection and getting sick.

I'm still processing this all. I'm frustrated, angry, and a bit emotional. Honestly, I'm worried. I hope that within the next three weeks my liver works overtime to heal, to get on the right track. I hope that my Crohn's will behave nicely, once I up my Humira dose. I just need time to process everything.