Wow, blog slacker here to say the least. I realized my last post was a cliffhanger...Meeting with the surgeon. Well that was uneventful to say the least. My 2 hour drive to Walnut Creek was for a 5 minute appointment. Turns out they wanted to do another scan on me in Sacramento. My lesion is "weird" according to the surgeon. I think the various synonyms for weird have been used one too many times in my health records. Apparently Adenomas and Hemangiomas usually have pretty distinct shapes-Usually of a round variety. What fun is it to be usual? Mine is apparently wedge shaped. Like cheese. I do love cheese so maybe my body is having some fun. So, I went back to Sacramento and had another nuclear scan. The not-so-definitive diagnosis is that it is in fact a Hemangioma. So, we'll monitor with MRI's periodically but otherwise leave it alone. I don't love the fact that no one feels 100% confident in this diagnosis, but I'm happy to not have surgery.
But the real reason why I (finally) am posting today is because HAPPY ANNIVERSARY to me! It's been one year today since I was diagnosed with AIH. A crazy year for sure! One year ago today I met Dr. M. for the first time and he told me 3 horrible things.
1. I have a chronic illness that could lead to liver failure, liver transplant, liver cancer, or early death.
2. I would have to wait at least 2 years before I could get pregnant
3. I would never be able to drink alcohol again.
Of those 3 horrible things the one that produced the most tears was #2. Some women (ie, me) get to a point where their biological clock has an alarm feature that just doesn't turn off. Unfortunately for me, mine was blaring one year ago. I was upset that I had this disease of course, but I trust Western Medicine and figured it could be treated, and there would be advancements etc. But dammit I wanted babies. NOW. But, I also wanted to be healthy and have healthy babies so I sucked it up and dealt with the blow.
Lucky for me that belief in Western Medicine was a good one because Dr. M. said with the way I responded to medicine it could be sooner. My ALT's and AST's normalized at the end of January (14 months after my initial bad bloodwork/hospitalization. I was put back on Prednisone (boo) so that I could prepare for pregnancy. My other medicines could cause birth defects, and one was too new to know what kind of side effects. Prednisone as crappy as it is has been around and has been proven to be safe. Luckily I was on a lower dose-only 15 mg this time and my liver #'s are holding steady. I've been "normal" for 4 months now. Well my liver has at least! Dr. M said 4-6 months of normal #'s before I get the ok to try. so I'm incredibly lucky that my 2 year wait turned in to only one. I'm lucky that my liver is good, and I've been otherwise healthy since the start of the year. I'm lucky I'm surrounded by awesome family and friends and I wouldn't have made it through this year without them. And hopefully I'll be making another lucky announcement soon. But until then, I'll enjoy my O'douls Amber....Cheers!
Sunday, June 10, 2012
Saturday, November 5, 2011
Good news, bad news
Since I last posted quite a few things have happened. At the end of September I had my MRI to check on the Hepatic Adenoma. The result of this test confirming an Adenoma would lead us into a surgery discussion. My doctor called me with my results the first week of October and told me the radiologist looked at the MRI and said the tumor or lesion was a Hemangioma which is an abnormal build-up of blood vessels in the skin or internal organs. We would do another MRI in a year to check on it. The good news with this diagnosis is that I wouldn't need surgery-Hemangiomas aren't dangerous unless they are very large and/or in an area where they could potentially rupture due to trauma to the body. My doctor said mine is in an area where the only possible way it could rupture is if I was in a major accident, and mostly likely I had have a whole series of other issues at that point. Thanks, I guess? So, here's the bad news...I didn't believe him. I called him to question this diagnosis. He had a little trouble understanding how I wasn't relieved to not need surgery-if this was truly a Hemangioma I was. My question/concern is that in the hospital last November the reviewing radiologist said it was a benign Adenoma. Then in May after my MRI the reviewing radiologist said it was possibly a malignant Adenoma. Then after the follow up CT-guided biopsy in June the reviewing radiologist said it was a benign Adenoma. So, now radiologist #4 comes up with something completely different. I didn't buy it. I wanted more information/more proof. To ease my fears my Doctor ordered a Red Blood Cell Nuclear Scan. I would be injected with a tracer and then have 2 sets of images taken. Red blood cells would be tagged, and would light up on the test confirming a Hemangioma. This test was scheduled for October 20th.
I started having some pain in my heart and saw my Primary care doctor who did an EKG and said it looked like I possibly had Pericarditis which is inflammation of the pericardium-the sac around the heart. I had to have a heart ultrasound and another EKG...They both came back normal so the doctor and cardiologist had me try Prilosec. I knew I didn't have heartburn, but I guess that thought maybe it was Gerd? Not sure, but I suck at taking that medicine! You have to take it 30 minutes before you eat and apparently I'm not good at remembering that!! At this point the pain has gone away so I'm just happy I can start working out again!
In the meantime I had a GI clinic appointment with Doctor M. My husband came with me because there was going to be a lot of questions I had, and I wanted him there. The best thing to come out of that appointment is that I got taken off Prednisone-HOORAY!!!!!! I almost kissed the doc, but I didn't think my hubby would approve! This medicine has been awful-I've gained a lot of weight, and I'm hungry all the time. My skin is worse than normal, I'm weepy, unhappy and just overall don't feel good on that medicine. I was put back on Entocort which is a different steroid, but with way less side effects. I'm still also on Azathioprine. What we discussed in the appointment is that I will be on Azathioprine for a long time, and probably for life-Over time we will hope to decrease the amount I take as much as possible since this is an immuno-suppressant. I'm back up to once a week blood tests since I had a medicine switch-One of the tests checks the therapeutic levels and the dangerous levels of the Azathioprine. Last week Doctor M. called and said there was room for improvement on the therapeutic levels so we increased the dosage. This is opposite of what we want, but I know it's temporary. The other great news is I can drink Non-Alcoholic beer and wine (blech) but the beer....Oh yummy!! I know it's not as good as the real stuff, but there are more options and some aren't bad. A beer flavored beverage after 11 months of nothing was very delicious to me!
I had the Nuclear scan on the 20th-it took a total of about 4 hours. I had an IV providing the tracer while I laid on table and a rotating camera took pics. When my Doctor called with the results I was not at all surprised to hear him say it wasn't a Hemangioma, and it is in fact an Adenoma. I LOVE being right, but wouldn't have minded being wrong in this case. So, the next step was for him to send a request to the surgeons to review my scans and figure out what we should do-The risks vs. benefits of surgery. In all the research I've done I've seen that because Adenomas are most likely estrogen driven that they should removed prior to pregnancy. I got a call from the surgery clinic in Walnut Creek and I was a little shocked to hear them say I could have an appointment with the surgeon for an evaluation/discussion next week!! I was expecting maybe December so I was a little surprised to hear it was so soon. This makes it all a little real, not that there is any guarantee I'll be having surgery soon due to the health of my liver, or what kind-Most likely it will involve a liver resection, but that will be discussed next week. My hubby will be taking the day off to come with me to Walnut Creek. It sucks that if I have surgery it will be there, but as long as they are the best I'm cool with that!!
So, until next week things are kind of up in the air again, but my liver function tests are going down to where they should be-Almost in normal range, and I'm happily off Prednisone now, and we finally went back to the gym today. Feeling better than I have in a while!!
Monday, August 29, 2011
Yo ho, Yo ho, a Diet Coke for me
This weekend was my best friend's bachelorette party in Tahoe...My first big whole weekend event where pretty much the world around me was drunk and I was drinking Diet Coke. I still had fun-The only bad part is I'm much more apt to dance to music I don't like (a.k.a. anything played at a club in Tahoe) when I'm drinking so I was a little more toned down. Oh well-It was the bride's night anyway. Nobody cared to see me drop it like it's hot! Also, all bars should get Diet Coke in cans instead of the fountain nozzle dealio they have because when there is no rum mixed in it, that Diet Coke tastes funky.
The wedding is next weekend and I can't wait to stand up for my bestie as she says I do!
As far as my liver goes, up next is a blood draw on Thursday-When you're used to going once a week, going this long feels weird. It's like I'm naked. I have no idea what's going on with my liver since I used my LFT's as a crutch. I'm actually looking forward to getting bloodwork done. I never thought I'd say that! After that is a tumor re-check MRI on September 28th. This is a big deal for me. If the tumor is still there then we start talking surgery. The reason why it might not be there is that sometimes a cluster of AIH cells can mimic an adenoma on an MRI and since we're treating the AIH with Prednisone and Azathioprine then maybe that cluster of cells will be gone. If not, then it is an adenoma and it will be removed. Right now my liver isn't healthy enough for surgery so we'll cross the first bridge on September 28th. If surgery is needed then we'll hope my liver is healthy enough by November.
Since I don't know if that's happening I'll leave it at that and hope for the best! I'm also hoping for the best with the boot camp class I'm attempting at the gym tonight. Hopefully I don't die. I probably should start off a little slower, but did I mention I'm in a wedding next weekend? Wish me luck!
The wedding is next weekend and I can't wait to stand up for my bestie as she says I do!
As far as my liver goes, up next is a blood draw on Thursday-When you're used to going once a week, going this long feels weird. It's like I'm naked. I have no idea what's going on with my liver since I used my LFT's as a crutch. I'm actually looking forward to getting bloodwork done. I never thought I'd say that! After that is a tumor re-check MRI on September 28th. This is a big deal for me. If the tumor is still there then we start talking surgery. The reason why it might not be there is that sometimes a cluster of AIH cells can mimic an adenoma on an MRI and since we're treating the AIH with Prednisone and Azathioprine then maybe that cluster of cells will be gone. If not, then it is an adenoma and it will be removed. Right now my liver isn't healthy enough for surgery so we'll cross the first bridge on September 28th. If surgery is needed then we'll hope my liver is healthy enough by November.
Since I don't know if that's happening I'll leave it at that and hope for the best! I'm also hoping for the best with the boot camp class I'm attempting at the gym tonight. Hopefully I don't die. I probably should start off a little slower, but did I mention I'm in a wedding next weekend? Wish me luck!
Sunday, August 21, 2011
A little game of good news/bad news
The weekend I got my diagnosis I had a pity party...But of course it also happened to be a weekend we had out of town guests. I sure was a fun hostess. It didn't help that not only was I emotionally not well, but I had a recurrence of nausea and major dizzy spells. It was as though my body, which had now not had any alcohol since November, wanted me to experience the bed/standing/sitting/holding the wall spins again. It was not good. I even had to skip breakfast with my friends on Sunday morning because I couldn't stand up. So, Monday morning I decided no more pity party. The only thing in this whole crap situation I could control was my attitude, so I was going to be positive.
This positivity was going well until my Doc called with my biopsy results. Good news first: The tumor was benign. Excellent news so far. The Bad news? The damage to my liver between the December biopsy and the June biopsy was worse than expected. There was worsening necrosis of the hepatocytes so Dr. M decided we would need to be more aggressive. How you ask? Prednisone. UGH. A medicine that comes with side effects like, moon face (as in-your face is as big as a moon), increased appetite, bone density loss, sleeplessness, and increased acne. I used to have perfect skin...the kind random strangers would comment on. Since going off hormonal birth control pills my skin FREAKED out and now I have zits galore. Going from one extreme to another is very depressing and caused my self esteem to take a significant hit. Now I get told it could get worse, and I could get fat on top of it? Someone needs to explain to the liver that all of the news I'd gotten in the last week is enough to drive someone to drink...only I can't because I have a bum liver, and stupid immune system soldiers.
I started the prednisone the week of my husband's family reunion-My doctor almost didn't let me go to Tahoe for the week that I had planned, but said as long as I got blood work done while I was there and on the way home I was ok. When I got the results of the blood work we were all shocked at how well the Prednisone seemed to be working. Dr. M called me and told me I was what those in the biz called "steroid responsive." Neat. Neato. Now I've achieved everything I've ever wanted. Ok, in all seriousness this was good news to hear-It meant he was already willing to taper my dose by 10mg (I started on 40mg). He also said this may mean we could talk babies sooner than 2 years...Ah, music to my ears!
After 2 weeks on the 30mg dose and about 4 weeks on Prednisone in total, my numbers continued to go down so Dr. M called with more good news-We could go down to 25mg. This was right before we were leaving for my cousin's wedding on the East Coast-We would be gone for 10 days. He said I didn't need to get lab work while being out of State-just prior to leaving and then when we got back. In the 4 weeks on Prednisone the only side effect I'd noticed was trouble sleeping-I was exhausted, but not sleepy. I also wake up early and can't fall back to sleep. But, my appetite was a little worse than normal but wasn't out of control-I was eating more/worse than normal, but I wasn't working out since that was put on hold for a little bit too so I figured it was par for the course. Our 2nd night of vacation Dr. M called my cell-he had gotten my lab work that I had done just before leaving and my numbers went up slightly. He put me back up to the 30mg dose of Prednisone. I guess we can't win 'em all right? We had a great vacation back east, and I was feeling like the good news was coming soon.
My LFT's didn't comply...the post-vacation results went up too. He didn't want to increase my Prednisone again so instead he put me on the Azathioprine at the same time as the Prednisone, and also prescribed Fosamax for osteoporosis since the steroids will leech calcium from your bones. Nothing makes you feel quite like an old lady like taking a medicine that Sally Field is hawking on TV. You like Me! You REALLY like me! Ok, she's selling a different brand, but still. So now my daily schedule involves taking my thyroid medicine first thing in the a.m. and I can't eat or drink for an hour after that. Then I eat breakfast at work, and then I take my Prednisone. My doctor said I can take a multivitamin again so that's after the Prednisone, and then after dinner I take my Azathioprine because it can cause upset stomach. On Wednesdays I have to throw an extra wrench in my day because I have to take my thyroid medicine first thing, wait my hour, and then take the Fosamax-I can't eat or drink, or lie down for an hour after this medicine either so Wednesdays I'm usually starving midmorning, but since I have to drink tons of water with this medicine I'm also too busy peeing to think about hunger.
I'm finally feeling the appetite side effects from this combo of medicines. I'm hungry ALL.THE.TIME. It sucks. I've gained about 7lbs since June. Pair that with exhaustion from not sleeping, and just an overall feeling of lethargy and I don't want to workout so the weight isn't going anywhere-it's just getting worse. I know I could have more outword appearing side effects like the worsening skin and the moon face, but I still do not feel good about myself. It's downright depressing. I'm sure my husband is feeling the effects of the medicines too, because I'm generally down these days. I try really hard not to be, but at this point I don't think it's a concious choice. I think the medicines are causing it. I think the biggest culprit is the lack of sleep.
This is why I started this blog. I don't want to feel down all the time. I need people to see it isn't so bad-And truly it isn't. I don't look sick, I don't feel sick. I just have to deal with shitty side effects from the medicines that I need to save my life. I need to find my mojo to get back to working out-This will help me get back some of the energy that I'm missing, and may even help me sleep. I need to feel good about myself again...locate the mojo and this may all come together nicely. Now that this blog is almost caught up to real time I hope the posts you see soon include working out and weight loss updates!
This positivity was going well until my Doc called with my biopsy results. Good news first: The tumor was benign. Excellent news so far. The Bad news? The damage to my liver between the December biopsy and the June biopsy was worse than expected. There was worsening necrosis of the hepatocytes so Dr. M decided we would need to be more aggressive. How you ask? Prednisone. UGH. A medicine that comes with side effects like, moon face (as in-your face is as big as a moon), increased appetite, bone density loss, sleeplessness, and increased acne. I used to have perfect skin...the kind random strangers would comment on. Since going off hormonal birth control pills my skin FREAKED out and now I have zits galore. Going from one extreme to another is very depressing and caused my self esteem to take a significant hit. Now I get told it could get worse, and I could get fat on top of it? Someone needs to explain to the liver that all of the news I'd gotten in the last week is enough to drive someone to drink...only I can't because I have a bum liver, and stupid immune system soldiers.
I started the prednisone the week of my husband's family reunion-My doctor almost didn't let me go to Tahoe for the week that I had planned, but said as long as I got blood work done while I was there and on the way home I was ok. When I got the results of the blood work we were all shocked at how well the Prednisone seemed to be working. Dr. M called me and told me I was what those in the biz called "steroid responsive." Neat. Neato. Now I've achieved everything I've ever wanted. Ok, in all seriousness this was good news to hear-It meant he was already willing to taper my dose by 10mg (I started on 40mg). He also said this may mean we could talk babies sooner than 2 years...Ah, music to my ears!
After 2 weeks on the 30mg dose and about 4 weeks on Prednisone in total, my numbers continued to go down so Dr. M called with more good news-We could go down to 25mg. This was right before we were leaving for my cousin's wedding on the East Coast-We would be gone for 10 days. He said I didn't need to get lab work while being out of State-just prior to leaving and then when we got back. In the 4 weeks on Prednisone the only side effect I'd noticed was trouble sleeping-I was exhausted, but not sleepy. I also wake up early and can't fall back to sleep. But, my appetite was a little worse than normal but wasn't out of control-I was eating more/worse than normal, but I wasn't working out since that was put on hold for a little bit too so I figured it was par for the course. Our 2nd night of vacation Dr. M called my cell-he had gotten my lab work that I had done just before leaving and my numbers went up slightly. He put me back up to the 30mg dose of Prednisone. I guess we can't win 'em all right? We had a great vacation back east, and I was feeling like the good news was coming soon.
My LFT's didn't comply...the post-vacation results went up too. He didn't want to increase my Prednisone again so instead he put me on the Azathioprine at the same time as the Prednisone, and also prescribed Fosamax for osteoporosis since the steroids will leech calcium from your bones. Nothing makes you feel quite like an old lady like taking a medicine that Sally Field is hawking on TV. You like Me! You REALLY like me! Ok, she's selling a different brand, but still. So now my daily schedule involves taking my thyroid medicine first thing in the a.m. and I can't eat or drink for an hour after that. Then I eat breakfast at work, and then I take my Prednisone. My doctor said I can take a multivitamin again so that's after the Prednisone, and then after dinner I take my Azathioprine because it can cause upset stomach. On Wednesdays I have to throw an extra wrench in my day because I have to take my thyroid medicine first thing, wait my hour, and then take the Fosamax-I can't eat or drink, or lie down for an hour after this medicine either so Wednesdays I'm usually starving midmorning, but since I have to drink tons of water with this medicine I'm also too busy peeing to think about hunger.
I'm finally feeling the appetite side effects from this combo of medicines. I'm hungry ALL.THE.TIME. It sucks. I've gained about 7lbs since June. Pair that with exhaustion from not sleeping, and just an overall feeling of lethargy and I don't want to workout so the weight isn't going anywhere-it's just getting worse. I know I could have more outword appearing side effects like the worsening skin and the moon face, but I still do not feel good about myself. It's downright depressing. I'm sure my husband is feeling the effects of the medicines too, because I'm generally down these days. I try really hard not to be, but at this point I don't think it's a concious choice. I think the medicines are causing it. I think the biggest culprit is the lack of sleep.
This is why I started this blog. I don't want to feel down all the time. I need people to see it isn't so bad-And truly it isn't. I don't look sick, I don't feel sick. I just have to deal with shitty side effects from the medicines that I need to save my life. I need to find my mojo to get back to working out-This will help me get back some of the energy that I'm missing, and may even help me sleep. I need to feel good about myself again...locate the mojo and this may all come together nicely. Now that this blog is almost caught up to real time I hope the posts you see soon include working out and weight loss updates!
Oops, wrong diagnosis.
I got back from Texas on Tuesday...Went back to work Wednesday and got a call from Kaiser. They had a cancellation for the next day and wanted to schedule my biopsy for Thursday. It was quick, but I wanted answers so I was all for it.
My hubby and I got to Kaiser bright and early to check in-They took me back pretty quickly. They would need to start my IV and get me ready for my Twilight state again. I was still hoping for sparkly vampires, but again I knew it wouldn't be that fun. My nurse hit a "gold mine" as she called it when she tried to start my IV so I ended up with blood all over my hand, all over my blanket, and all over the floor. Didn't bother me any, but I guess it was a little unnerving to my husband who saw me later with blood all over me! This biopsy took a lot longer, and was a lot more painful-the versed didn't do it's magic this time so I was relatively aware of everything. I'm guessing that had to do with the much more detailed instructions I had to follow this time. I was put in the CT machine, and then marked. The radiologist would have me breathe in and he would push the needle through-It was a lot of pressure each time and I was hoping it was over quickly-My body wanted to go to sleep from the drug combo they gave me, but I was too aware of what was going on. It was a weird sensation. I made it through and was ready for a nap but sleep wasn't easy to come by this time. My hubby came back and got me when it was time and we got some lunch on the way home. Since I had to fast prior to my MRI I was pretty hungry. I got home, ate half my sandwich and immediately felt nauseous. My mom was bringing dinner by later and by the time she got there I was in bed-I felt like I was going to vomit and my head was hurting. Not a happy combo.
I had my consultation with Dr. M the next day so I decided to write up the questions I had for him in regards to the Hepatic Adenoma, because I will generally forget about 90% of them when I walk in the door. I felt better by the time I went to bed, and slept decently so I figured that was a good sign that the nausea was short lived. I got to my appointment with Dr. M in the morning, we talked about my biopsy, and then I was ready to go through my list of questions. Dr. M, was apparently a baseball player at some point in his life, because he threw me a CURVE ball...He told me I had Autoimmune Hepatitis. You know-the diagnosis the other GI told me I didn't have 6months ago?
Holy hell...Now I'm thrown for a loop. I was staring at my questions on my paper waiting for him to tell me that surgery on the tumor will still make this all go away. Instead what he's telling me is that I now have this disease for life, I was born with it. And then he went on about the immune system and how it's like an army. When the body gets an infection the immune system fires on the infection and then the brain tells it to retreat once it's done with it's job. Well with an autoimmune disease the brain gets the message a little screwy. It tells it's army guys to fire on the wrong thing, and then apparently never tells it to stop. In my case I could get an infection in my finger, or a bacteria, or a toxin and my brain says "FIRE ON THE LIVER!" So really my liver isn't the problem, it's my brain. But, the doctors will treat the liver-Not the brain. Many people in my life are probably disappointed by this. This explains why I was originally misdiagnosed as having toxic hepatitis-We took away alcohol, meds, vitamins and anything else that could make my immune system attack so my LFT's had no where to go but down. But in May I got a virus-This is what triggered my numbers to increase, because my army guys were engaging in friendly fire on my liver instead of engaging in hand to hand combat on that virus.
I still had these tumor questions, but since some of them worked into this diagnosis I ran them by Dr. M. First was in regards to babies. He said I was looking at 2 years before I could try to conceive. This was due to the course of treatment I would be put on. This was when the tears started flowing pretty steadily. My world was flipped on it's head entirely in 10 minutes. When I was finally able to talk through the tears we discussed the treatment plan. He didn't want to put me on Prednisone so he would start me on another steroid called Entocort-It came with less side effects than the Prednisone and would treat the liver. The steroid would cool off the liver, help reduce the inflammation, and bring my LFT's back down to normal range. Then once that happened we would start Azathioprine-This is an immuno-suppressant that they give patients following transplants. It can cause birth defects which is why I wouldn't be able to try to get pregnant while on this medicine. We would treat the AIH and then check on the adenoma at a later time-This was due to the fact that sometimes AIH cells can mimic an adenoma on an MRI so we would treat the AIH and see if it took care of the adenoma.
On top of all this, I was also told I can't drink alcohol ever again. Doctors are good at taking away all your fun.
My hubby and I got to Kaiser bright and early to check in-They took me back pretty quickly. They would need to start my IV and get me ready for my Twilight state again. I was still hoping for sparkly vampires, but again I knew it wouldn't be that fun. My nurse hit a "gold mine" as she called it when she tried to start my IV so I ended up with blood all over my hand, all over my blanket, and all over the floor. Didn't bother me any, but I guess it was a little unnerving to my husband who saw me later with blood all over me! This biopsy took a lot longer, and was a lot more painful-the versed didn't do it's magic this time so I was relatively aware of everything. I'm guessing that had to do with the much more detailed instructions I had to follow this time. I was put in the CT machine, and then marked. The radiologist would have me breathe in and he would push the needle through-It was a lot of pressure each time and I was hoping it was over quickly-My body wanted to go to sleep from the drug combo they gave me, but I was too aware of what was going on. It was a weird sensation. I made it through and was ready for a nap but sleep wasn't easy to come by this time. My hubby came back and got me when it was time and we got some lunch on the way home. Since I had to fast prior to my MRI I was pretty hungry. I got home, ate half my sandwich and immediately felt nauseous. My mom was bringing dinner by later and by the time she got there I was in bed-I felt like I was going to vomit and my head was hurting. Not a happy combo.
I had my consultation with Dr. M the next day so I decided to write up the questions I had for him in regards to the Hepatic Adenoma, because I will generally forget about 90% of them when I walk in the door. I felt better by the time I went to bed, and slept decently so I figured that was a good sign that the nausea was short lived. I got to my appointment with Dr. M in the morning, we talked about my biopsy, and then I was ready to go through my list of questions. Dr. M, was apparently a baseball player at some point in his life, because he threw me a CURVE ball...He told me I had Autoimmune Hepatitis. You know-the diagnosis the other GI told me I didn't have 6months ago?
Holy hell...Now I'm thrown for a loop. I was staring at my questions on my paper waiting for him to tell me that surgery on the tumor will still make this all go away. Instead what he's telling me is that I now have this disease for life, I was born with it. And then he went on about the immune system and how it's like an army. When the body gets an infection the immune system fires on the infection and then the brain tells it to retreat once it's done with it's job. Well with an autoimmune disease the brain gets the message a little screwy. It tells it's army guys to fire on the wrong thing, and then apparently never tells it to stop. In my case I could get an infection in my finger, or a bacteria, or a toxin and my brain says "FIRE ON THE LIVER!" So really my liver isn't the problem, it's my brain. But, the doctors will treat the liver-Not the brain. Many people in my life are probably disappointed by this. This explains why I was originally misdiagnosed as having toxic hepatitis-We took away alcohol, meds, vitamins and anything else that could make my immune system attack so my LFT's had no where to go but down. But in May I got a virus-This is what triggered my numbers to increase, because my army guys were engaging in friendly fire on my liver instead of engaging in hand to hand combat on that virus.
I still had these tumor questions, but since some of them worked into this diagnosis I ran them by Dr. M. First was in regards to babies. He said I was looking at 2 years before I could try to conceive. This was due to the course of treatment I would be put on. This was when the tears started flowing pretty steadily. My world was flipped on it's head entirely in 10 minutes. When I was finally able to talk through the tears we discussed the treatment plan. He didn't want to put me on Prednisone so he would start me on another steroid called Entocort-It came with less side effects than the Prednisone and would treat the liver. The steroid would cool off the liver, help reduce the inflammation, and bring my LFT's back down to normal range. Then once that happened we would start Azathioprine-This is an immuno-suppressant that they give patients following transplants. It can cause birth defects which is why I wouldn't be able to try to get pregnant while on this medicine. We would treat the AIH and then check on the adenoma at a later time-This was due to the fact that sometimes AIH cells can mimic an adenoma on an MRI so we would treat the AIH and see if it took care of the adenoma.
On top of all this, I was also told I can't drink alcohol ever again. Doctors are good at taking away all your fun.
Tuesday, August 16, 2011
I'm sorry, what?
I'm now an expert at Kaiser labs...I know what they want me to do/say every time and in fact I can usually tell them which labs they should be drawing for, and even which colored vials they should go in. It's kind of sick. Good thing I'm not squeamish around needles! Thanks to my prior donations with Blood Source and all my visits to Kaiser I now have holes in my arm and a lot of scar tissue-This can make a blood draw a littler trickier, but I generally have decent luck. Speaking of Blood Source, I had to call them to be taken of the donation list as well as the bone marrow registry. At least I tried to be a good person-My liver however had other plans.
So during the 6months after my biopsy I spent a lot of time getting blood drawn...and that was it....and I mean it. My primary care doctor was awesome and checked in every week-She was like a cheerleader for me every time my LFT's went down, and a sympathetic ear if they went up-even be it slightly. Unfortunately for me, she wasn't my treating GI doc. You remember her? With the awesome credentials-Well, she didn't excel in bedside manner. I emailed her a few times when my numbers which had pretty much been on a steady decline, would have little fluctuations up-They were minor, I understood that but I couldn't understand how if you take the toxins out-Alcohol, medicines, vitamins etc. then why would my LFT's increase at all? The response I got from the GI doc was "You need to not worry so much." Gee, thanks-that's sound advice from someone who's taken all of the above out of my life as well as told me to put babies, the one thing I want most right now on hold. My primary care doctor was kind enough to tell me that LFT's can fluctuate day to day anyway, and there can be differences in the actual labs as well. It made me feel better to know that, but made me question my care under that GI.
Thursday I got one of the scariest calls of my life. I was driving to a work appointment in San Diego with my boss and my phone rang-It was Kaiser so I answered it, on speaker phone, and it was my primary care doc-I could tell by the tone of her voice I wanted to get off speaker phone. She was calling with my MRI results-She indicated the radiologist who reviewed it no longer felt the tumor was benign, but that I needed to have a CT guided biopsy. This would allow them to biopsy the tumor and the liver at the same time. So, now I possibly have cancer...And I have to go in to a work appointment. Excellent timing. I got back to the hotel later, called my hubby, called my Mom, called my Dad, called my Sis. Just another thing to add to my plate full of crazy. I left San Diego and flew to Texas for my Stepbrother's graduation. My Dad is a physician so I had the opportunity to talk to him about what to expect, as well as what questions to ask since this isn't his expertise. One thing he recommended was to see if Dr. M had reviewed my MRI himself-Some docs will do this if they are specialists. I emailed him to see if he had-He actually picked up the phone and called me while I was in Texas-This already felt like a better Doctor/Patient relationship. He had only seen the radiologists report, but he talked to me a little bit about the biopsy, and what to expect...Cancer or no cancer there was a good possibility of surgery.
Surprisingly at this point, I still wasn't panicking. I just wanted some answers. I was ready for this roller coaster to come to a stop. The toxic hepatitis would be working it's way out of my system, and then I would have surgery and my LFT's would return to normal.
Too much to ask?
So during the 6months after my biopsy I spent a lot of time getting blood drawn...and that was it....and I mean it. My primary care doctor was awesome and checked in every week-She was like a cheerleader for me every time my LFT's went down, and a sympathetic ear if they went up-even be it slightly. Unfortunately for me, she wasn't my treating GI doc. You remember her? With the awesome credentials-Well, she didn't excel in bedside manner. I emailed her a few times when my numbers which had pretty much been on a steady decline, would have little fluctuations up-They were minor, I understood that but I couldn't understand how if you take the toxins out-Alcohol, medicines, vitamins etc. then why would my LFT's increase at all? The response I got from the GI doc was "You need to not worry so much." Gee, thanks-that's sound advice from someone who's taken all of the above out of my life as well as told me to put babies, the one thing I want most right now on hold. My primary care doctor was kind enough to tell me that LFT's can fluctuate day to day anyway, and there can be differences in the actual labs as well. It made me feel better to know that, but made me question my care under that GI.
Here's where things got really crazy...
Thursday I got one of the scariest calls of my life. I was driving to a work appointment in San Diego with my boss and my phone rang-It was Kaiser so I answered it, on speaker phone, and it was my primary care doc-I could tell by the tone of her voice I wanted to get off speaker phone. She was calling with my MRI results-She indicated the radiologist who reviewed it no longer felt the tumor was benign, but that I needed to have a CT guided biopsy. This would allow them to biopsy the tumor and the liver at the same time. So, now I possibly have cancer...And I have to go in to a work appointment. Excellent timing. I got back to the hotel later, called my hubby, called my Mom, called my Dad, called my Sis. Just another thing to add to my plate full of crazy. I left San Diego and flew to Texas for my Stepbrother's graduation. My Dad is a physician so I had the opportunity to talk to him about what to expect, as well as what questions to ask since this isn't his expertise. One thing he recommended was to see if Dr. M had reviewed my MRI himself-Some docs will do this if they are specialists. I emailed him to see if he had-He actually picked up the phone and called me while I was in Texas-This already felt like a better Doctor/Patient relationship. He had only seen the radiologists report, but he talked to me a little bit about the biopsy, and what to expect...Cancer or no cancer there was a good possibility of surgery.
Surprisingly at this point, I still wasn't panicking. I just wanted some answers. I was ready for this roller coaster to come to a stop. The toxic hepatitis would be working it's way out of my system, and then I would have surgery and my LFT's would return to normal.
Too much to ask?
Monday, August 15, 2011
Out of the hospital...Now what?
First thing to do when getting out of the hospital? Go on vacation. Check!
My hubby and I spent Thanksgiving week in Texas with my Dad, Stepmom, Stepbrother, Sister, Brother-in-Law, and niece. It was the perfect way to get away from the stress of being in the hospital. I was still pretty tired which is one of the side effects of Hepatitis.
We went out to dinner to a local Mexican restaurant one night and while we were on the porch waiting for a table my hubby asked if I wanted a margarita...I gave him the death stare since I wasn't allowed to have a margarita and it was then just as the evening sunlight hit my face that everyone realized my eyeballs were as yellow as this blog. FYI, I chose this background for it's jaundice-like color. I like to coordinate my colors with my diseases. Pray I never get gangrene! So, the jaundice had set in-luckily it was mostly in the white of my eyes and not too noticeable in my skin tone, but still it was a little unnerving and not all that flattering. I mean I look okay in yellow, but I wouldn't choose it first. Especially not on my eyeballs.
As soon as I got back from vacation I was back at the lab for more bloodwork-At this point my primary care doc had put in standing orders for me to go 2x a week. Yeah! When the lab tech told me I had 99 orders waiting I almost croaked! I got a call for a GI consultation all within a week and half of me being in the hospital...they were moving fast on my case which made me happy.
Met with the GI doc who had some pretty awesome credentials so I was happy to be in good hands. We went through my entire life history it seemed like. I gave her the bottle for that herbal supplement I took so she could review the ingredients-She was still on board with the Toxic Hepatitis diagnosis but something in one of my labs indicated I had antibodies from an Autoimmune disease so they wanted to rule this out/diagnose this. She told me a biopsy of the liver would be scheduled to check for scarring. This would help to determine if we were looking at AIH.
My biopsy was scheduled for December 7th, but was performed by another GI specialist due to an already scheduled vacation by my GI doc. We wanted to move on it, so I didn't care who did it! This was an adventure-I was put into Twilight state, and not the one involving Edward and Jacob, but one involving Versed. They told me I'd be in/out of it, and wouldn't feel anything but they would tell me to breathe in/out during the needle stick. I remember being in the room, talking to the doc, and then being wheeled out. No clue anything had happened...Works for me! They put me on my right side for the next 2 hours which was MISERABLE! My hip was killing me. None of the nurses told me their names so when I woke up from my catatonic state I yelled out "NURSE! I need a nurse!" and what do you know, someone came by. I suppose they don't care for patients yelling when there are several other patients in the room. I finally got off my side, and had to lay there for another couple hours. The liver is very vascular so they are concerned with bleeding after these procedures, I was concerned with getting a sandwich since I hadn't eaten or drank anything in like 15 hours. Here's what I learned while in recovery though-I was the youngest patient in the room, and everyone else had polyps and diverticulitis. I heard the same speech given over and over again to all the baby boomers and beyond in that room. Made me thankful they were checking my liver and not my pooper.
I finally got my sandwich, and Oreos. Score.
Overall this procedure was not bad...I took it easy for the rest of the day but wasn't overly sore. I was back at work the next day and it just felt like I had a bruise on my side-You really couldn't even see much of a mark.
The doc told me I could have results by that Friday since my GI doc and the GI doc who performed the biopsy would be gone the next week. I'm not what you would call a patient patient so I like results.
So, what do you do when you don't get them as planned? Call someone else...Enter Dr. M. He called me on the following Friday night (a week later than I was supposed to hear) on my cell to tell me he was filling in, had gotten my message(s) :0P and was calling with the results. Inconclusive. Awesome, you stuck a needle in my liver to find out nothing. There was no major scarring which indicated whatever was going on was fairly new. This was a good thing as it meant there wasn't a lot of damage to the liver already.
So, once everyone was back in town the diagnosis was Toxic Hepatitis. No treatment plan except to wait it out while getting blood work 2x a week to check my LFT's.
My hubby and I spent Thanksgiving week in Texas with my Dad, Stepmom, Stepbrother, Sister, Brother-in-Law, and niece. It was the perfect way to get away from the stress of being in the hospital. I was still pretty tired which is one of the side effects of Hepatitis.
We went out to dinner to a local Mexican restaurant one night and while we were on the porch waiting for a table my hubby asked if I wanted a margarita...I gave him the death stare since I wasn't allowed to have a margarita and it was then just as the evening sunlight hit my face that everyone realized my eyeballs were as yellow as this blog. FYI, I chose this background for it's jaundice-like color. I like to coordinate my colors with my diseases. Pray I never get gangrene! So, the jaundice had set in-luckily it was mostly in the white of my eyes and not too noticeable in my skin tone, but still it was a little unnerving and not all that flattering. I mean I look okay in yellow, but I wouldn't choose it first. Especially not on my eyeballs.
As soon as I got back from vacation I was back at the lab for more bloodwork-At this point my primary care doc had put in standing orders for me to go 2x a week. Yeah! When the lab tech told me I had 99 orders waiting I almost croaked! I got a call for a GI consultation all within a week and half of me being in the hospital...they were moving fast on my case which made me happy.
Met with the GI doc who had some pretty awesome credentials so I was happy to be in good hands. We went through my entire life history it seemed like. I gave her the bottle for that herbal supplement I took so she could review the ingredients-She was still on board with the Toxic Hepatitis diagnosis but something in one of my labs indicated I had antibodies from an Autoimmune disease so they wanted to rule this out/diagnose this. She told me a biopsy of the liver would be scheduled to check for scarring. This would help to determine if we were looking at AIH.
My biopsy was scheduled for December 7th, but was performed by another GI specialist due to an already scheduled vacation by my GI doc. We wanted to move on it, so I didn't care who did it! This was an adventure-I was put into Twilight state, and not the one involving Edward and Jacob, but one involving Versed. They told me I'd be in/out of it, and wouldn't feel anything but they would tell me to breathe in/out during the needle stick. I remember being in the room, talking to the doc, and then being wheeled out. No clue anything had happened...Works for me! They put me on my right side for the next 2 hours which was MISERABLE! My hip was killing me. None of the nurses told me their names so when I woke up from my catatonic state I yelled out "NURSE! I need a nurse!" and what do you know, someone came by. I suppose they don't care for patients yelling when there are several other patients in the room. I finally got off my side, and had to lay there for another couple hours. The liver is very vascular so they are concerned with bleeding after these procedures, I was concerned with getting a sandwich since I hadn't eaten or drank anything in like 15 hours. Here's what I learned while in recovery though-I was the youngest patient in the room, and everyone else had polyps and diverticulitis. I heard the same speech given over and over again to all the baby boomers and beyond in that room. Made me thankful they were checking my liver and not my pooper.
I finally got my sandwich, and Oreos. Score.
Overall this procedure was not bad...I took it easy for the rest of the day but wasn't overly sore. I was back at work the next day and it just felt like I had a bruise on my side-You really couldn't even see much of a mark.
The doc told me I could have results by that Friday since my GI doc and the GI doc who performed the biopsy would be gone the next week. I'm not what you would call a patient patient so I like results.
So, what do you do when you don't get them as planned? Call someone else...Enter Dr. M. He called me on the following Friday night (a week later than I was supposed to hear) on my cell to tell me he was filling in, had gotten my message(s) :0P and was calling with the results. Inconclusive. Awesome, you stuck a needle in my liver to find out nothing. There was no major scarring which indicated whatever was going on was fairly new. This was a good thing as it meant there wasn't a lot of damage to the liver already.
So, once everyone was back in town the diagnosis was Toxic Hepatitis. No treatment plan except to wait it out while getting blood work 2x a week to check my LFT's.
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