So my appointments on Tuesday were disappointing at best. My LFTs continue to rise, and my Crohn's is the most active it's ever been. I'm working so hard to do my best to stay afloat. Keeping Paleo, working out four to five days a week, things going smoothly at work... It's just frustrating.
I am going back on azathioprine. I will be on four immunosuppressing medications, azathioprine, Humira, Myfortic, and prednisone. I will also be starting antibiotic prophalaxis, in the form of Bactrim DS, for I am an opportunistic infection waiting to happen. I have also returned to 20mg prednisone until further notice.
On the bright side, I may be one of the few people who have lost weight after six months of prednisone therapy. Trying to find the positives here. I follow up with my GI in one month, and hepatologist in two. Come on complete immune suppression (never thought I would say that in a million years). I'm not going down without a fight.
Thursday, October 16, 2014
Friday, October 3, 2014
Tomorrow morning, I will be getting my monthly blood work. I'm nervous. How is a girl, whose had hundreds of vials of blood drawn within the past year, nervous about blood work? It's all about the numbers. If my LFTs aren't normalized, or at least signifcatly decreased, it will mean that I have "failed" another medication. The only problem is that I'm running out of options.
I know it's not healthy to worry or to fear something so small. I know that my life can't and shouldn't revolve around a single blood test. I just want to be prepared. This time, we spaced my appointments two months apart, with two sets of blood work. Last months blood work has been the worst since initially starting immunosuppressive therapy for AIH. There are only two medications left (and they belong to the same class of drugs), that I can try. There is also no way possible, that at this time I can discontinue the prednsione, not with my LFTs climbing. Initially, I was only supposed to stay on prednisone for six months. At this point, even if my LFTs go down, I will end up staying on prednisone for some time. This means I will be needing a DEXA scan, to get a baseline for how my bones are doing, with long time steroid use.
I need to quiet my brain. Tomorrow will come and go, and I will survive a mere needleprick. just got to try my best to stay optimistic.
I know it's not healthy to worry or to fear something so small. I know that my life can't and shouldn't revolve around a single blood test. I just want to be prepared. This time, we spaced my appointments two months apart, with two sets of blood work. Last months blood work has been the worst since initially starting immunosuppressive therapy for AIH. There are only two medications left (and they belong to the same class of drugs), that I can try. There is also no way possible, that at this time I can discontinue the prednsione, not with my LFTs climbing. Initially, I was only supposed to stay on prednisone for six months. At this point, even if my LFTs go down, I will end up staying on prednisone for some time. This means I will be needing a DEXA scan, to get a baseline for how my bones are doing, with long time steroid use.
I need to quiet my brain. Tomorrow will come and go, and I will survive a mere needleprick. just got to try my best to stay optimistic.
Thursday, September 25, 2014
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.
Tuesday, September 9, 2014
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.
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.
Sunday, August 24, 2014
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.
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.
Saturday, August 16, 2014
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.
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.
Monday, August 11, 2014
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.
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.
Monday, August 4, 2014
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.
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.
Sunday, July 27, 2014
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.
Saturday, July 26, 2014
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.
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.
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