When I get busy and forget to blog I might as well just start over with the next doctor's appointments as it is a given I will not remember most...or half...of what has happened. Nature of the beast I guess. But let's see...here is what I DO remember:
I had my abdominal u/s and my spleen was back to normal. I guess when they wait almost 3 weeks that's what happens. Of course I'm relieved as this means that the spleen is one less thing I have to worry about...for now. My liver is still inflamed and fatty, although I do not know if it was worse or the same. The MA, who was the one that told me my results, didn't seem to know either. I was put on to 2000 mgs. a day of Salsalate. Salsalate is an NSAID. NSAID's and I do not get along. My rheumy took me off the Percocet and prescribed Vicoden in hopes of controlling the pain (if the Salsalate didn't work) with less Tylenol to bug my liver. However, I gotta wonder how 2000 mgs. of Ibuprofen, which is way worse for your liver, is better than 325 mgs. of Tylenol?! I have to take partial "blame" in that I told Dr. S I wanted to get off of the painkillers if at all possible. So I think she's trying to accomplish that for me. But at this point I'm now re-thinking this given the toxicity is higher with the NSAID's and they kill my stomach. The crap part of it all is that I NEED something that is anti-inflammatory to see if that will reduce the pain. Yet if I can't take it what's a girl to do? My stomach has been quite sore/tender for over a week now and I did take the Salsalate for one day (big whoop, right?) but stopped when I found out it was an NSAID. For now I'm trying to "heal" my stomach and then give it a shot.
But weirdness...when I talked to the MA about my abdominal u/s results I asked if Dr. S wanted me to schedule a follow-up appt. for my bone/joint issues. The MA checked Dr. S's notes and said, "Nope. Unless you have the red, swollen joints again." Uhhh...okay. So like no follow-up appt. ever? My dad was extremely bothered by this given the fact that Dr. S has prescribed me medicine, and as such is treating me, yet isn't going to see how things are going. Hell, even Dr. B (the rheumy from Bend) scheduled me in every 4-6 wks. I'm not sure what to think of it. I like Dr. S, thought she was thorough, was impressed she found the low levels of Vitamin D, and now this. I think I suck at picking doctors. :o/ We'll see what, if anything, happens after I have my Vitamin D levels rechecked sometime next week as this Thurs. is my last dose of the mega D.
Moving along to the next "issue." I had my follow-up appt. w/Dr. J the pulmo. I've been put onto Singulair and Intal (when it comes in...the pharmacy had to order it). Gotta keep up with the PFM readings to see if these meds work. I've taken two doses of the Singulair and haven't noticed any effect, but it's not a steroid so I'm guessing it's going to take awhile. The upside is that I'm not feeling like crap because of it. I am, however, battling a head cold that's been going around everywhere so who knows. :oD
And finishing up with...the appointment w/the Hepatologist, Dr Z. What I hadn't had a chance to blog about was that the clinic where Dr. Z is at said I needed to see Dr. N, as he is who I originally saw. Of course I was completely against that and told them that I would just go to another clinic. I called a place that had several doctors who had been recommended in a recent magazine and started the process to get in to see one of the Hepatologists. But then a scheduler at Dr. Z's office came through. She had fought hard to get me in and the clinic coordinator finally agreed to let me see Dr. Z. Personally, I think it's shitty and incredibly stupid that this was even an issue to begin with. I could see if I wanted to switch docs just for the hell of it...I guess...yet I had a valid reason for not wanting to see Dr. N again. I told them he had brushed me off and made me feel stupid. Why on Earth would I want to be seen by him again? And why couldn't I see another doctor, let alone the doctor I was originally scheduled to be seen by anyways? /End rant. So thank you, Janelle (I think her name is), for fighting the good fight for me, a person you've never met but felt compelled to help. My appt. with Dr. Z isn't until April although I'm on the cancellation list for him as well. Good news is that because my spleen is okay right now I can wait to be seen. I will say that my liver has been torturous to me lately. Lots of pain, bile diarrhea, and nausea. My right side still hurts every now and then and radiates to my back and down towards my hip. Curious to see what Dr. Z has to say about it.
Wow...maybe I didn't forget anything! But then how would I know, right? ;o) This weekend some friends of ours and their kiddos came up to visit us. Their kids just so happen to be the best friends of our kids. Clear as mud? Anyways, Ryan and I offered to keep Colton, Makaila, Rachelle, and Hayley overnight so that Tiffani and David could have a night off and our kids could catch up on some much needed friend time. Although the constant running up and down the stairs and extra work took a heavy toll on me (I'm still incredibly sore and worn out), it was soooo worth it! The kids loved every minute of it and it was nice to have the house filled with craziness for a bit. They are all really good kids, and despite a bit of mischief from the girls, everyone got a long well and hated to say goodbye. I had every intention of sleeping most of the day today but alas, our TV needs to be looked at again (they've already cleaned it, replaced the light engine twice, and it's messed up once more) so I was awoken at 8:30 by the repairman calling to let me know he'd be here between 1 p.m. - 4 p.m. The kids are off school yet have been total dolls today! Thank God! lol Maybe I'll sleep all day tomorrow.
Or not.
Showing posts with label Liver issues. Show all posts
Showing posts with label Liver issues. Show all posts
Monday, February 18, 2008
Monday, February 4, 2008
Sometimes technology sucks
Lately I have this thing where I get a date in my head and it gets stuck. I convince myself that an appointment I have scheduled (for instance) is on "xyz" date...even when it isn't. I can't tell you how annoying this is. I did this with my appt. for Dr. B (the Alpha-1 pulmo). I was certain it was on Feb. 4th, but when his office called two weeks ago to request that I send them some more info, I asked when my appt. was just to be sure. Feb. 1st...8:40 a.m. Whew, good thing I asked! So I put it into my Thunderbird mail calendar thingamabob and added a reminder to it. Days passed, new stuff cropped up, and I slipped back into thinking the appt. was on the 4th. When I didn't get a reminder phone call for Fri. I thought nothing of it. Friday came and went (with a phone call from Dr. S...more on that later), Saturday was half over and I started questioning when I was supposed to see Dr. B. I pulled up the calendar and there was nothing listed for the 4th...or the 1st...or anywhere for that matter. Everything was GONE. I went into the living room and asked Ryan to check the calendar on the laptop and sure enough, there was nothing listed. After some checking it appeared as if a software glitch ate all of our entries, including my appointment w/Dr. B which was (obviously) on the 1st, not the 4th. I cried. I had been waiting for this appt. for over 4 months and because of a glitch, both from the computer and from the clinic not calling to remind me, I missed it. Don't get me wrong, I should have written it down as well. Lesson learned.
Today I called and explained what had happened. The receptionist was extremely kind and did her best. She got ahold of Dr. B and asked if he would come into the clinic for an extra appt., yet he wouldn't. He's also booked out until May. Yep...May. So I'll be waiting forever once again. I'm on the cancellation list just in case, although Dr. B is rarely in clinic so I doubt anyone else will be as stupid as me and not show up. Needless to say I am tattooing the date for this appt. on my forehead instead of trusting my computer. Sigh...
One good thing did take place on Fri., though. Dr. S called me back after I left another message for her and we went over the recent findings. She spoke with a bone specialist/radiologist (something like that) again regarding my SI joints. He told her that what I have is degenerative, not related to the cysts/lesions in my pelvis, maybe caused by childbirth (??), and that he wants to see my MRI from last year. I told her I'd have them send it up so he can look it over and we'll go from there I guess. Dr. S also put in an order for me to schedule an u/s for my liver, spleen, veins, et al--which I did today and will be going under the Doppler this Thurs. In addition to all of that I got a referral back to the gastro docs. I specifically requested NOT to see Dr. N again, however. When I called the gasto folks today to get scheduled they put me in w/Dr. Z who I was originally supposed to see way back when. But...like Dr. B, Dr. Z is a busy man. So busy in fact that his earliest appt. is in JUNE! Once again I was put on the cancellation list and the gal I spoke with said she would also speak to the doctor to see if he can get me in earlier. If not I'm seeing someone else. Both Dr. S and the doc I saw at the Immediate Care clinic were quite adamant I be seen a.s.a.p. The person I talked to said they hadn't received a referral from Dr. S yet, so maybe when she sends it that will speed things along. I'm also going to pick up my records from the Immediate Care place and send them on to Dr. Z so that he knows what's going on. Fingers crossed that I can see him by next week.
The pain on the left side (spleen) isn't as bad as it was the weekend before last, or maybe I'm getting used to it, but it's still pretty painful. My right side (liver) is really uncomfortable. I'm still battling the nausea and fatigue. Fatigue is better, nausea is too, yet they're there. I think I've lost weight, though...bonus!
Lung-wise my Peak Flow Meter readings are holding around 350-400. I'm no longer feeling the effects of the corticosteroids from the Advair, thankfully. I go back to Dr. J (the pulmo) in another week or so. More updates when that happens.
More petechiae have appeared on my arms and now on my legs. Dr. S was at a loss as to why they are showing up when my platelets are okay. Who knows with me! :o/ I'm just glad I didn't need a transfusion...knock on wood.
Today I called and explained what had happened. The receptionist was extremely kind and did her best. She got ahold of Dr. B and asked if he would come into the clinic for an extra appt., yet he wouldn't. He's also booked out until May. Yep...May. So I'll be waiting forever once again. I'm on the cancellation list just in case, although Dr. B is rarely in clinic so I doubt anyone else will be as stupid as me and not show up. Needless to say I am tattooing the date for this appt. on my forehead instead of trusting my computer. Sigh...
One good thing did take place on Fri., though. Dr. S called me back after I left another message for her and we went over the recent findings. She spoke with a bone specialist/radiologist (something like that) again regarding my SI joints. He told her that what I have is degenerative, not related to the cysts/lesions in my pelvis, maybe caused by childbirth (??), and that he wants to see my MRI from last year. I told her I'd have them send it up so he can look it over and we'll go from there I guess. Dr. S also put in an order for me to schedule an u/s for my liver, spleen, veins, et al--which I did today and will be going under the Doppler this Thurs. In addition to all of that I got a referral back to the gastro docs. I specifically requested NOT to see Dr. N again, however. When I called the gasto folks today to get scheduled they put me in w/Dr. Z who I was originally supposed to see way back when. But...like Dr. B, Dr. Z is a busy man. So busy in fact that his earliest appt. is in JUNE! Once again I was put on the cancellation list and the gal I spoke with said she would also speak to the doctor to see if he can get me in earlier. If not I'm seeing someone else. Both Dr. S and the doc I saw at the Immediate Care clinic were quite adamant I be seen a.s.a.p. The person I talked to said they hadn't received a referral from Dr. S yet, so maybe when she sends it that will speed things along. I'm also going to pick up my records from the Immediate Care place and send them on to Dr. Z so that he knows what's going on. Fingers crossed that I can see him by next week.
The pain on the left side (spleen) isn't as bad as it was the weekend before last, or maybe I'm getting used to it, but it's still pretty painful. My right side (liver) is really uncomfortable. I'm still battling the nausea and fatigue. Fatigue is better, nausea is too, yet they're there. I think I've lost weight, though...bonus!
Lung-wise my Peak Flow Meter readings are holding around 350-400. I'm no longer feeling the effects of the corticosteroids from the Advair, thankfully. I go back to Dr. J (the pulmo) in another week or so. More updates when that happens.
More petechiae have appeared on my arms and now on my legs. Dr. S was at a loss as to why they are showing up when my platelets are okay. Who knows with me! :o/ I'm just glad I didn't need a transfusion...knock on wood.
Tuesday, January 29, 2008
When it rains it pours...
So true that statement is. Where to start? Lungs...we'll hit that first. I stopped the Advair and spoke with Dr. J's nurse and she said to stay off of the Advair, continue with the Peak Flow tracking, and Dr. J would go over things at my next visit. I have been told Spiriva might be a good option for me so I'll ask about it when I see Dr. J.
Around Wed. of last week I noticed several spots on my arms that looked like pin pricks. I have seen a couple of these here and there over the past month or so, yet never this many. I had read something about petechiae on the Alpha-1 liver email list and on Fri. decided to research about it. Unfortunately all I could find picture-wise, for the most part anyway, were purpura which are much larger and more abundant. I snapped a pic of my arm as best I could and emailed it to my dad to see what he thought. Although it was tough to tell he thought it might be petechiae. Finally my rheumy called me after I left about 4 messages in 3 days for her MA. I'm not sure if the MA gave my rheumy my messages until that 4th one as she never called back to just say, "Got your message and will be passing it along to Dr. S." Nothing. No return phone call at all. Blah. When I spoke with Dr. S I brought up the petechiae and she wanted me to be checked right away. Because it was Fri. late, late afternoon the lab at OHSU was closing and wouldn't re-open to outpatient folks until Mon. She set up an order for me to have some blood drawn first thing that Mon. but told me to try and find a lab that could do it this weekend. I did check around yet was unable to find one that could get the results back any sooner than she could on Mon. In addition to all of this Dr. S prescribed Vicoden and another anti-inflammatory to try out. I was instructed to wait on the anti-inflammatory until we got my platelet count back.
Saturday I had a hard time waking up. The nausea I had been battling for about 4 days or so was back and my left side hurt. At first I thought I might have a kidney infection and I did my best to ignore it given I am tired of having something new crop up...and feeling like a hypochondriac. I slept most of the day away as I had zero energy. Around 6:30 p.m. I stopped ignoring the pain and ran down to the Immediate Care for what I thought would be a quick piss in a cup and some antibiotics to go. Got checked in quickly, brought back to the room, given the cup to pee in, and did so dutifully. The doctor came in and went over my symptoms and health history. He told me that while I didn't have any bacteria in my urine, I did have a little bit of protein and bilirubin. Bad news bears on that last part. During the exam the pain on my left side seemed to be under my ribs. The doc asked if I had fallen or strained my side--which I hadn't. More talking. More thinking. I mentioned the petechiae, which he looked at, and immediately said that it was definitely petechiae. hmmmm... I ask if my spleen is on the left side...it is. This time he has me lay on my right side and he gently probes under my ribs on the left. "Your spleen is enlarged." Aha! Wait...that's not good, right? Blood is drawn and I am told to call back the following day for the results and to see my doctor on Mon. FOR SURE! I go home...not knowing what it all means, yet scared nonetheless. I read. I don't like what I read. So I play with the kids and Ryan. Anything to get my mind off of things. I sleep. That night my heart races, probably from the cappuccino I had at 8 p.m. Bad idea. I have a hard time falling back to sleep. My heart skips a beat here and there making me feel like everything is draining out of me all in a brief second...then it's back. Very much like my gallbladder attacks. I'm also fighting bile diarrhea again. Dumping syndrome. I hate that.
I sleep most of the day on Sun. too. I just can't get enough rest. In between I read some more. Still no good answers. I call the Immediate Care center...nothing. Wait. Call later. Nothing. About 24 hrs. later the results are in. My platelets are holding for the moment. Good news. My liver enzymes are back up, yet not sky high. Not good news, but could be worse. I sleep some more. The pain on my left side is still yelling at me, thankfully not shouting, or screaming, so I can handle it. Vicoden helps take the edge off enough so that I can bend, every so slowly, at the waist. I hate the extra grogginess it adds.
Mon. I call and ask to speak to Dr. S. The receptionist informs me that Dr. S isn't in the office on Mon. or Tues. but that Dr. S's MA can get her information at ANY time. I get put through to the MA's voicemail and leave a message detailing what has happened and how Dr. S wanted to know what was going on lab wise for me. Please call me, or have her call me. The day passes and nothing. Surprised? Not me. Annoyed? Hell yes. Nausea subsides a bit and I'm able to eat small meals. I do take advantage of this as it's been awhile since I've wanted to eat. The spleen pain seems a tad less today but maybe it's because I took half a Vicoden in the morning as my bones and joints were hurting pretty bad, and the other half in the early evening. I also feel less tired and am able to stave off my cat naps for the whole day.
Today I am back to being tired but I'm ignoring it well thus far. It's noon and no word from the MA or Dr S. I would call the gastro I saw before however I have no trust in that man. I would prefer to find a new one. How sad is that? With all that is going on and as serious as this is I can't stomach putting my faith and care into that man's hands. Sad. This time I'm quite scared...but not as scared as I am driving up this big ass hill we live at the bottom of. Ice and steep roads do not mix. :oO Priorities, priorities. ;o)
Around Wed. of last week I noticed several spots on my arms that looked like pin pricks. I have seen a couple of these here and there over the past month or so, yet never this many. I had read something about petechiae on the Alpha-1 liver email list and on Fri. decided to research about it. Unfortunately all I could find picture-wise, for the most part anyway, were purpura which are much larger and more abundant. I snapped a pic of my arm as best I could and emailed it to my dad to see what he thought. Although it was tough to tell he thought it might be petechiae. Finally my rheumy called me after I left about 4 messages in 3 days for her MA. I'm not sure if the MA gave my rheumy my messages until that 4th one as she never called back to just say, "Got your message and will be passing it along to Dr. S." Nothing. No return phone call at all. Blah. When I spoke with Dr. S I brought up the petechiae and she wanted me to be checked right away. Because it was Fri. late, late afternoon the lab at OHSU was closing and wouldn't re-open to outpatient folks until Mon. She set up an order for me to have some blood drawn first thing that Mon. but told me to try and find a lab that could do it this weekend. I did check around yet was unable to find one that could get the results back any sooner than she could on Mon. In addition to all of this Dr. S prescribed Vicoden and another anti-inflammatory to try out. I was instructed to wait on the anti-inflammatory until we got my platelet count back.
Saturday I had a hard time waking up. The nausea I had been battling for about 4 days or so was back and my left side hurt. At first I thought I might have a kidney infection and I did my best to ignore it given I am tired of having something new crop up...and feeling like a hypochondriac. I slept most of the day away as I had zero energy. Around 6:30 p.m. I stopped ignoring the pain and ran down to the Immediate Care for what I thought would be a quick piss in a cup and some antibiotics to go. Got checked in quickly, brought back to the room, given the cup to pee in, and did so dutifully. The doctor came in and went over my symptoms and health history. He told me that while I didn't have any bacteria in my urine, I did have a little bit of protein and bilirubin. Bad news bears on that last part. During the exam the pain on my left side seemed to be under my ribs. The doc asked if I had fallen or strained my side--which I hadn't. More talking. More thinking. I mentioned the petechiae, which he looked at, and immediately said that it was definitely petechiae. hmmmm... I ask if my spleen is on the left side...it is. This time he has me lay on my right side and he gently probes under my ribs on the left. "Your spleen is enlarged." Aha! Wait...that's not good, right? Blood is drawn and I am told to call back the following day for the results and to see my doctor on Mon. FOR SURE! I go home...not knowing what it all means, yet scared nonetheless. I read. I don't like what I read. So I play with the kids and Ryan. Anything to get my mind off of things. I sleep. That night my heart races, probably from the cappuccino I had at 8 p.m. Bad idea. I have a hard time falling back to sleep. My heart skips a beat here and there making me feel like everything is draining out of me all in a brief second...then it's back. Very much like my gallbladder attacks. I'm also fighting bile diarrhea again. Dumping syndrome. I hate that.
I sleep most of the day on Sun. too. I just can't get enough rest. In between I read some more. Still no good answers. I call the Immediate Care center...nothing. Wait. Call later. Nothing. About 24 hrs. later the results are in. My platelets are holding for the moment. Good news. My liver enzymes are back up, yet not sky high. Not good news, but could be worse. I sleep some more. The pain on my left side is still yelling at me, thankfully not shouting, or screaming, so I can handle it. Vicoden helps take the edge off enough so that I can bend, every so slowly, at the waist. I hate the extra grogginess it adds.
Mon. I call and ask to speak to Dr. S. The receptionist informs me that Dr. S isn't in the office on Mon. or Tues. but that Dr. S's MA can get her information at ANY time. I get put through to the MA's voicemail and leave a message detailing what has happened and how Dr. S wanted to know what was going on lab wise for me. Please call me, or have her call me. The day passes and nothing. Surprised? Not me. Annoyed? Hell yes. Nausea subsides a bit and I'm able to eat small meals. I do take advantage of this as it's been awhile since I've wanted to eat. The spleen pain seems a tad less today but maybe it's because I took half a Vicoden in the morning as my bones and joints were hurting pretty bad, and the other half in the early evening. I also feel less tired and am able to stave off my cat naps for the whole day.
Today I am back to being tired but I'm ignoring it well thus far. It's noon and no word from the MA or Dr S. I would call the gastro I saw before however I have no trust in that man. I would prefer to find a new one. How sad is that? With all that is going on and as serious as this is I can't stomach putting my faith and care into that man's hands. Sad. This time I'm quite scared...but not as scared as I am driving up this big ass hill we live at the bottom of. Ice and steep roads do not mix. :oO Priorities, priorities. ;o)
Thursday, September 20, 2007
Day 2/3 after the shots
I am still having quite a bit of alternating pain in the SI joints. Sometimes it's the left one, pinching/burning, and other times it's the right. Either way I'm still quite uncomfortable. Nothing that throws up a red flag and says "get thee to thy doctor right away" mind you. There is no redness or swelling so I'm assuming it's just the after-effects of having needles inserted into inflamed joints. I did read tonight that it can take 5-7 days before the shot kicks in and I've read even longer. I will say that tentatively I've noticed my legs have not been nearly as achy. Course that may change as the stabbing pain in my pelvis that I'm focusing on goes away. ;o)
My feet/ankles have been swelling a bit. The other night my right foot was pretty big. Like a troll foot. Or what I imagine a troll foot would look like. I got it...Hobbit! Hobbit foot! Something new...and hopefully something that doesn't last.
I started back on the Sulfasalazine last night. I am slated to see Dr. B on Mon. of next week so I figured it was best to start it back up again. Still having pain in my liver, enough that it's gotten my attention again. If I have enough energy I plan to head down to St. Charles and do the blood draw tomorrow. I wanted to do it today but that was not happening. Between being super sore and tired I opted to stay home and catch up on a few things that needed to be done around here. I did take it easy, yet accomplished quite a bit for the pain/fatigue level I'm in!
Speaking of which, the fatigue does seem a tad bit better. Would be nice if the fog and tiredness went away to the point that I could clean, run errands, and have fun again!
My TMJ has been acting up. I think it's from the weather...or maybe I'm clenching my teeth at night. I ate a chewy bar today and it felt like I had been gnawing on leather for four hours straight. Achy and stiff. Should've had him inject some steroids into my jaw. Talk about ouch! Could be worth it, though.
My feet/ankles have been swelling a bit. The other night my right foot was pretty big. Like a troll foot. Or what I imagine a troll foot would look like. I got it...Hobbit! Hobbit foot! Something new...and hopefully something that doesn't last.
I started back on the Sulfasalazine last night. I am slated to see Dr. B on Mon. of next week so I figured it was best to start it back up again. Still having pain in my liver, enough that it's gotten my attention again. If I have enough energy I plan to head down to St. Charles and do the blood draw tomorrow. I wanted to do it today but that was not happening. Between being super sore and tired I opted to stay home and catch up on a few things that needed to be done around here. I did take it easy, yet accomplished quite a bit for the pain/fatigue level I'm in!
Speaking of which, the fatigue does seem a tad bit better. Would be nice if the fog and tiredness went away to the point that I could clean, run errands, and have fun again!
My TMJ has been acting up. I think it's from the weather...or maybe I'm clenching my teeth at night. I ate a chewy bar today and it felt like I had been gnawing on leather for four hours straight. Achy and stiff. Should've had him inject some steroids into my jaw. Talk about ouch! Could be worth it, though.
Wednesday, August 29, 2007
Results are in
I was finally able to get my hands on the results of my liver biopsy and looks like as of right now there are no Alpha-1 granules in my liver. This is good, of course I have no idea if there could still be granules elsewhere and just not in the biopsy site, or if they could still appear later. Hopefully these questions will be answered when I see Dr. Z in Oct. I did cancel the appt. with that bitch of an NP and am sure they won't call to see why or tell me my results. There were also no signs of fibrosis or cirrhosis--more good news. Not so great news is that I have a mild fatty liver, the left lobe of the liver is enlarged, and the right lobe is "particularly prominent." The problem is that usually fatty liver is associated with obesity/being overweight, diabetes, and/or alcoholism--a.k.a. things you can change and get better. I am nowhere near being overweight, I don't have diabetes, and I don't drink with the exception of a beer or glass of wine ever so often (even more seldom these days). My diet is good, I eat lots of veggies and fruits because I love them, chicken, meat, fish are typical, I avoid bad stuff as much as possible though I do indulge here and there with a piece or two of chocolate (sometimes every night...ack! Ryan bought me 2 lbs. of Leonidas damnit!), and I'd love to lose 10 lbs. but overall my nutrition intake is fine. And believe me, if I thought it needed tweaking I would both admit it and change it. So what's causing the fatty liver? That's the million dollar question right now. The second million dollar question is, "Does it matter?" I don't know if that's a problem. I'm guessing that I'll have to be monitored to ensure that this doesn't advance to fibrosis and then cirrhosis as it very easily can. One of the gals on my Alpha-1 list started off with a fatty liver (with no apparent reason for it, like me), then it slowly progressed until she ended up having a transplant. Unfortunately she hadn't had a liver biopsy until the very end so no way to know if she had the Alpha-1 granules when she was at the fatty liver stage or not. In the end, the important part is that at last check the blood levels were normalizing and we just have to hope they stay that way. I am still bloated and having pain from the enlarged liver but such is life. I can live with it so long as things aren't bad.
I saw Dr. A (ortho) on Mon. for another follow-up appt. Wouldn't you know it, my SI joints have been behaving themselves, only causing the dull ache like usual, until this past weekend when the left side started giving me shooting pains in the area when I bent over. Then I guess I started favoring that side so the right one got out of whack and it too decided to bitch. So by Mon. I was ready to try the cortisone injections despite being scared of something going wrong like the liver biopsy and being in a ton of pain. Plus, after that bone biopsy I'm a little gun shy with sticking needles into that area. Nevertheless, I'm game for doing the injections and possibly having pain relief somewhere. What I didn't know was that the procedure is done with xray guidance and would have to be scheduled. My kids had come with me on Mon. as I had no one to watch them, so they were relieved to learn they wouldn't have to be anywhere near me when they shoved needles into my butt. :o) I would've made them leave the room, of course, however the mere thought gave them the heebie jeebies. Dr. A also refilled the Percocet so if the cortisone doesn't work I'll at least have something. I'm still keeping the dosage at a half to a whole a day unless the pain is really unbearable and then sometimes I hit two a day, but that's also still rare. Thankfully.
Today I noticed I was having some breathing difficulties which may have been due to the hot weather. It had been cool for awhile (I loved it...was almost like Fall!) and then the sun came back and brought the heat with it. Just another reminder that I need to call Dr. A.B. up at OHSU for a pulmonology work-up. I'm way too good at procrastination. Well that and we're so slammed with weddings from here on out that I keep telling myself it would be too difficult to make the trek up to Portland. Excuses, excuses.
Aciphex is continuing to do it's job at keeping the reflux at bay. I've been having horrible nausea and even a slight amount of breakthrough heartburn which I am attributing to my PMS. I had the worst bout of nausea the other day before we had to go decorate that I thought for sure I'd be spending most of the time hogging a stall at the venue. At that point I was sure I was getting the flu or something. I couldn't even drink water without wanting to hurl. Time passed and slowly it went away. Then my boobs started hurting and my face broke out. Plus I hit a wall fatigue-wise again and started sleeping roughly 10 hrs. and feeling as if it had only been 4. And maybe I got a little moody too. Maybe. At least it wasn't the flu.
I'm writing this next portion down to remind myself to call and bitch at Dr. B's office and find out what I'm supposed to do medicine-wise as no one has returned my calls. I'd really like to get the cortisone and then assuming it works, start weaning off of the Percocet. However, I have to get the joint/muscle pain under control first and I can't until they can get me something that works.
That's it for now, I suppose. Taking it day by day and enjoying the good ones.
I saw Dr. A (ortho) on Mon. for another follow-up appt. Wouldn't you know it, my SI joints have been behaving themselves, only causing the dull ache like usual, until this past weekend when the left side started giving me shooting pains in the area when I bent over. Then I guess I started favoring that side so the right one got out of whack and it too decided to bitch. So by Mon. I was ready to try the cortisone injections despite being scared of something going wrong like the liver biopsy and being in a ton of pain. Plus, after that bone biopsy I'm a little gun shy with sticking needles into that area. Nevertheless, I'm game for doing the injections and possibly having pain relief somewhere. What I didn't know was that the procedure is done with xray guidance and would have to be scheduled. My kids had come with me on Mon. as I had no one to watch them, so they were relieved to learn they wouldn't have to be anywhere near me when they shoved needles into my butt. :o) I would've made them leave the room, of course, however the mere thought gave them the heebie jeebies. Dr. A also refilled the Percocet so if the cortisone doesn't work I'll at least have something. I'm still keeping the dosage at a half to a whole a day unless the pain is really unbearable and then sometimes I hit two a day, but that's also still rare. Thankfully.
Today I noticed I was having some breathing difficulties which may have been due to the hot weather. It had been cool for awhile (I loved it...was almost like Fall!) and then the sun came back and brought the heat with it. Just another reminder that I need to call Dr. A.B. up at OHSU for a pulmonology work-up. I'm way too good at procrastination. Well that and we're so slammed with weddings from here on out that I keep telling myself it would be too difficult to make the trek up to Portland. Excuses, excuses.
Aciphex is continuing to do it's job at keeping the reflux at bay. I've been having horrible nausea and even a slight amount of breakthrough heartburn which I am attributing to my PMS. I had the worst bout of nausea the other day before we had to go decorate that I thought for sure I'd be spending most of the time hogging a stall at the venue. At that point I was sure I was getting the flu or something. I couldn't even drink water without wanting to hurl. Time passed and slowly it went away. Then my boobs started hurting and my face broke out. Plus I hit a wall fatigue-wise again and started sleeping roughly 10 hrs. and feeling as if it had only been 4. And maybe I got a little moody too. Maybe. At least it wasn't the flu.
I'm writing this next portion down to remind myself to call and bitch at Dr. B's office and find out what I'm supposed to do medicine-wise as no one has returned my calls. I'd really like to get the cortisone and then assuming it works, start weaning off of the Percocet. However, I have to get the joint/muscle pain under control first and I can't until they can get me something that works.
That's it for now, I suppose. Taking it day by day and enjoying the good ones.
Wednesday, August 22, 2007
A step in the right direction
Got the results of my liver panel bloodwork and it looks like my ALT was only two points above normal, so that's really good. The AST and everything else was normal, which is how it's been for a bit anyways. I'm still waiting on my records for my biopsy. The hospital changed a bunch of things so that now instead of going in, requesting what you need, signing a release, and walking out with your paperwork, you have to go in, sign a release, and wait. They also implemented a fee for each time you get your records. When the person in charge of handling all of this called to verify what I needed and my address I asked him about the fee and what they did for people who couldn't afford it. I was told that they "make deals" with people. Okay. So it's more of a guideline than a rule, eh? He said that he wouldn't charge me, which was nice considering how much the cost of everything has added up, and would put them in the mail that day (Monday). I still haven't received them. If they haven't arrived by tomorrow I'm going to call and see if I can't go down there and pick them up myself.
The GI's office agreed to call in one month of Questran for me. Why they couldn't just do another standing order is beyond me. I will most likely need to be on this for the rest of my life so it annoys me that they are making it difficult.
The Aciphex seems to be doing well for me. My throat is ever so slightly sore at times, yet much better. I also haven't been having the reflux like before. It's been nice not having that big issue to deal with on top of everything else.
Surprisingly I've started having a bit more energy. Nothing to get excited over, just enough that when I drink my coffee I actually get a few things accomplished. Been awhile since that has happened.
Arthritis-wise the achy legs continue. Some days are better than others. No one from Dr. B's office has called about me stopping the Sulfasalazine and what they want me to do. My SI joints have been acting up here and there but the cortisone shots still scare me. I have no doubt those will suck.
The GI's office agreed to call in one month of Questran for me. Why they couldn't just do another standing order is beyond me. I will most likely need to be on this for the rest of my life so it annoys me that they are making it difficult.
The Aciphex seems to be doing well for me. My throat is ever so slightly sore at times, yet much better. I also haven't been having the reflux like before. It's been nice not having that big issue to deal with on top of everything else.
Surprisingly I've started having a bit more energy. Nothing to get excited over, just enough that when I drink my coffee I actually get a few things accomplished. Been awhile since that has happened.
Arthritis-wise the achy legs continue. Some days are better than others. No one from Dr. B's office has called about me stopping the Sulfasalazine and what they want me to do. My SI joints have been acting up here and there but the cortisone shots still scare me. I have no doubt those will suck.
Tuesday, August 14, 2007
Interesting development
Got a call from the rheumy's office today but it wasn't about me stopping the Sulfasalazine (yes, I finally called to let them know that--yesterday). Instead the girl I talked to said that NP B had called them requesting my test results. I found this highly interesting given I had already signed the paperwork and was told they would be getting said results well over a month ago. Obviously they never did that. Plus, it makes me wonder if the labwork drawn yesterday showed continued elevated liver enzymes. In looking back there have been 4-5 AST and ALT tests that were above normal all since 2006. And I noticed that the ALT has continually risen instead of going back down like my AST had since last year. I hope to get all copies of my tests this week, yet it may have to wait until next week as I don't want to make two trips--and I really want my liver biopsy stuff finalized.
I also started a new med, Aciphex, for my GERD issues. Fingers crossed this one works and doesn't cause any side effects!
This afternoon I put in a call to NP B's office to inquire about getting the prescription for the Questran since she forgot to give it to me, and I wanted to cancel my appt. with her. Unfortunately I had to leave a message and no one called me back. My hope is that NP B called in the prescription for me and that tomorrow I'll get a phone call stating as such...then I can tell them I have no desire to see that woman ever again. I do realize that I have to tread lightly as I can't just go pissing off the only GI practice in town. That sucks.
I also started a new med, Aciphex, for my GERD issues. Fingers crossed this one works and doesn't cause any side effects!
This afternoon I put in a call to NP B's office to inquire about getting the prescription for the Questran since she forgot to give it to me, and I wanted to cancel my appt. with her. Unfortunately I had to leave a message and no one called me back. My hope is that NP B called in the prescription for me and that tomorrow I'll get a phone call stating as such...then I can tell them I have no desire to see that woman ever again. I do realize that I have to tread lightly as I can't just go pissing off the only GI practice in town. That sucks.
Monday, July 23, 2007
Still kickin'
Today will be the first day I up the Sulfasalazine from one a day to two a day. I'm hoping I see better results soon as I'm about half to 3/4 of the way through my Percocet and I don't know if my ortho will give me anymore or not. And really, I'd LOVE to be off of them even if it is just one a day. Course as I say this I know that the Sulfasalazine isn't great for my liver either. Maybe worse? Not sure. In a perfect world I wouldn't need any drugs...but this isn't a perfect world.
Physically I feel the same. Exhausted, nauseous at times, bloated, and my legs still ache insanely bad. Here's my enlarged belly:
Maternity clothes time anyone?? You can see how that far side (what looks like my left but is actually my right as this was taken in a mirror) sticks out more than the other. Hello liver!!
I can't say I'm looking forward to next Monday. I already read Harry Potter and the Deathly Hallows. Finished it in two days. Didn't want to but couldn't put it down. I'll have to find something else to read/watch for that day. Ah well...
My left eye flared up yesterday. Looked very ugly and angry. It's been awhile since the last flare so I was kind of surprised to see it red again.
I also haven't set up an appt. with a pulmonologist yet but I'm working on it. Sometimes I think my breathing issues when I'm just laying around (shortness of breath for instance) comes from my liver being enlarged. Other times I wonder if it might be due to Alpha-1 Lung disease. We'll see.
Tuesday, July 3, 2007
Answers
I gave in and called Dr. R's nurse on Fri. and explained that DH had gotten job offers in two completely different cities (more on that in a bit), so finding out my test results would be muy helpful if possible. She promised to call and check on them, yet I heard nothing. Thing is, she did call me that Fri.--she just called my business line and when I saw the answering machine light blinking I thought it was another client that had called. I listened to the message on Sun. and the nurse had said she tried to get the results but that they weren't ready yet. I was given the dates of Mon. or Tues.
Patiently I waited all day Mon. and resisted the urge to call and bug them again. By late morning today I couldn't handle it and I called. Dr. R called me back--I knew the answer then. She said my Alpha-1 level was very low (mine was at 71, normal is 100-200) and advised me not to smoke and definitely stay away from second-hand smoke. At this point I got a little panicked as she hadn't told me what my genotype was and didn't sound like she had the results, so I asked if there were any results that read "ZZ" or "MM" or something like that. "Oh..." she said, pausing, "Yes...M1Z. I think...wait, maybe it's 'MM.' No, that's normal. Yes, you're an 'M1Z'." I was a little shocked I guess. Part of me figured this would be another dead-end despite all my "surety's" and symptoms and blood test results. Still, I gathered my wits enough to ask that Dr. R make a copy of the paperwork for me and leave it at the front desk. She happily agreed and stated that I probably knew more about this then she did. She's probably right--no offense to her but A1AD is rare and most docs don't know much about it.
Immediately I delved into the internet reading as much as I could. I also called Ryan and left a message for him to call me as I had my test results back. Turns out the MZ gene makes me a "carrier"--obvious, right? There are more cases of liver issues w/the MZ than lung, however both can be affected, though rarely both of them together. M = normal gene, Z = severely low gene. Half 'n Half baby! Either way, not good but it could be worse. Null/Null is really shitty, while ZZ is just a step above it. Interesting stuff I'm telling ya!
Anyways...I have no doubt that the GI doc I'll see next week will be clueless about A1AD. I am seriously thinking about calling there and finding out if this doc knows anything about it because if she doesn't, it won't be worth the money. Of course the other part of me knows that this is some serious shit right now and the fact that I'm getting worse instead of better means I need to get the liver stuff figured out like yesterday. I am so bloated I look pregnant. This is a sign of cirrhosis. I have others too. I also found out that a medicine I am on is commonly prescribed for jaundice, so it's very possible that if I weren't taking this med I would be yellow. Not sure if the med is masking it, or if I don't have it. Another question for the GI doc. I am becoming more and more fatigued. Everytime I think I can't get any more worn out than I already am...BAM...it happens. I'm sure more restful sleep would help yet I have a helluva time falling asleep these days. Not that it matters. I could go to bed at 10 p.m. and wake up at 9 a.m. and still feel like I hadn't slept at all.
The job thing...DH was offered another position at the same company, only in Portland. There is also a job opening (same company) for the position he's in now in New Hampshire. We discussed the second location and while the city looks beautiful and we'd be close to Boston and places like New York, we're just not sure we'd want to "do" the winters. Plus I'd still be about an hour away from a big hospital. So, we're shooting for Portland. He submitted his resume although he's already been told he'll get the job. Now I just have to sell the biz, we have to sell the house, buy one up there, and do it all before school starts!! NO PRESSURE! Honestly, we're stoked though. Not looking forward to the process of it all, yet now my dad can have a true pick of jobs, DH can get into one that he's been interested in for awhile, I can be near a big hospital, and the kids will be closer to the coast (that they adore), OMSI, the zoo, etc. and so forth! Plus, w/the salary boost I won't have to work. The plan is for me to breed our dog if her health is fit for it (hips, eyes, and heart), keep one of her pups, and if that pup passes the health stuff when she is 2, then breed her as well. Otherwise, it's taking care of myself!! I am most likely facing a transplant, possibly soon, maybe later so I need to get in shape for whatever life throws at me.
The answer to my question as to what's wrong with me sucks...but it's an answer...and now I can move forward with doing what needs to be done to stay around for awhile.
Patiently I waited all day Mon. and resisted the urge to call and bug them again. By late morning today I couldn't handle it and I called. Dr. R called me back--I knew the answer then. She said my Alpha-1 level was very low (mine was at 71, normal is 100-200) and advised me not to smoke and definitely stay away from second-hand smoke. At this point I got a little panicked as she hadn't told me what my genotype was and didn't sound like she had the results, so I asked if there were any results that read "ZZ" or "MM" or something like that. "Oh..." she said, pausing, "Yes...M1Z. I think...wait, maybe it's 'MM.' No, that's normal. Yes, you're an 'M1Z'." I was a little shocked I guess. Part of me figured this would be another dead-end despite all my "surety's" and symptoms and blood test results. Still, I gathered my wits enough to ask that Dr. R make a copy of the paperwork for me and leave it at the front desk. She happily agreed and stated that I probably knew more about this then she did. She's probably right--no offense to her but A1AD is rare and most docs don't know much about it.
Immediately I delved into the internet reading as much as I could. I also called Ryan and left a message for him to call me as I had my test results back. Turns out the MZ gene makes me a "carrier"--obvious, right? There are more cases of liver issues w/the MZ than lung, however both can be affected, though rarely both of them together. M = normal gene, Z = severely low gene. Half 'n Half baby! Either way, not good but it could be worse. Null/Null is really shitty, while ZZ is just a step above it. Interesting stuff I'm telling ya!
Anyways...I have no doubt that the GI doc I'll see next week will be clueless about A1AD. I am seriously thinking about calling there and finding out if this doc knows anything about it because if she doesn't, it won't be worth the money. Of course the other part of me knows that this is some serious shit right now and the fact that I'm getting worse instead of better means I need to get the liver stuff figured out like yesterday. I am so bloated I look pregnant. This is a sign of cirrhosis. I have others too. I also found out that a medicine I am on is commonly prescribed for jaundice, so it's very possible that if I weren't taking this med I would be yellow. Not sure if the med is masking it, or if I don't have it. Another question for the GI doc. I am becoming more and more fatigued. Everytime I think I can't get any more worn out than I already am...BAM...it happens. I'm sure more restful sleep would help yet I have a helluva time falling asleep these days. Not that it matters. I could go to bed at 10 p.m. and wake up at 9 a.m. and still feel like I hadn't slept at all.
The job thing...DH was offered another position at the same company, only in Portland. There is also a job opening (same company) for the position he's in now in New Hampshire. We discussed the second location and while the city looks beautiful and we'd be close to Boston and places like New York, we're just not sure we'd want to "do" the winters. Plus I'd still be about an hour away from a big hospital. So, we're shooting for Portland. He submitted his resume although he's already been told he'll get the job. Now I just have to sell the biz, we have to sell the house, buy one up there, and do it all before school starts!! NO PRESSURE! Honestly, we're stoked though. Not looking forward to the process of it all, yet now my dad can have a true pick of jobs, DH can get into one that he's been interested in for awhile, I can be near a big hospital, and the kids will be closer to the coast (that they adore), OMSI, the zoo, etc. and so forth! Plus, w/the salary boost I won't have to work. The plan is for me to breed our dog if her health is fit for it (hips, eyes, and heart), keep one of her pups, and if that pup passes the health stuff when she is 2, then breed her as well. Otherwise, it's taking care of myself!! I am most likely facing a transplant, possibly soon, maybe later so I need to get in shape for whatever life throws at me.
The answer to my question as to what's wrong with me sucks...but it's an answer...and now I can move forward with doing what needs to be done to stay around for awhile.
Thursday, June 28, 2007
And we wait
I saw Dr. A for my bone stuff on Monday and we agreed that getting my liver issues under control first and THEN dealing w/the pain from my SI Joints was the best course of action. Although it's not fun having pain in that area in addition to everything else, I'd rather focus on one thing at a time.
After that visit I headed over to Dr. B's office to pick up my liver CT report. Imagine my surprise when he came out and called me back into a little room. He said that he wanted me to see my GP a.s.a.p. and that my liver had been enlarged at my last CT (in '06). This was news to me! So I headed over to St. Charles to pick up my lab reports from that visit to the ER last year and low and behold my liver enzymes were elevated then too. I remembered the doc at the ER mentioning this and acting like it was odd to him. I chalked the levels being up to my gall bladder behaving badly. I guess that wasn't the case. Another new development is that I have a small cyst in my liver that was there last year too. Go figure.
The next day I saw my GP, Dr. R. There is conflicting reports as to whether or not my liver has actually been enlarged for over a year, or if Dr. B misread the report. Part of me wouldn't be surprised if the radiologist that read the CT back in March of 2006 thought, "Eh, it's borderline enlarged but not enough to mention it," (something Dr. R said was possible) as there was no mention of the cyst in my report either. And according to the radiologist that read this latest CT, it's been there since last year. Dr. R also theorized that Dr. B whipped out his trusty measuring tape and actually measured my liver to compare it himself. I'll let you pick because at this point I haven't a clue. Dr. R sent a note over to the GI dept. at BMC and hoped I would be seen within a week. We discussed the Alpha-1 issue and she gladly ordered the Phenotype test for me. I waited a bit, got poked, and left.
On Wed., Dr. R's nurse called to let me know that the soonest the GI folks could get me in wouldn't be until July 12th. I'm apparently also on the "cancellation list" which I know doesn't mean shit because no one's gonna cancel their appointment unless they're dying. And even then I bet they show up. Today I got the paperwork for my GI appt. and wouldn't you know it...I got the doctor that I was told, "Stay away from! She's an idiot!" Fabulous! I'm torn...keep the appt. and just give her a shot, or try to switch it now.
The waiting sucks though. The lab tech seemed to think I'd get the results back by the end of this week. I'm not betting on that.
As a side note, Dr. B wanted me to stay on the Gabapentin but I haven't gotten back on it yet. I have had so much stuff to do that I didn't want to chance dealing w/diarrhea again. Could've been the CT contrast...or the Gabapentin...or both. I'll wait to find out.
After that visit I headed over to Dr. B's office to pick up my liver CT report. Imagine my surprise when he came out and called me back into a little room. He said that he wanted me to see my GP a.s.a.p. and that my liver had been enlarged at my last CT (in '06). This was news to me! So I headed over to St. Charles to pick up my lab reports from that visit to the ER last year and low and behold my liver enzymes were elevated then too. I remembered the doc at the ER mentioning this and acting like it was odd to him. I chalked the levels being up to my gall bladder behaving badly. I guess that wasn't the case. Another new development is that I have a small cyst in my liver that was there last year too. Go figure.
The next day I saw my GP, Dr. R. There is conflicting reports as to whether or not my liver has actually been enlarged for over a year, or if Dr. B misread the report. Part of me wouldn't be surprised if the radiologist that read the CT back in March of 2006 thought, "Eh, it's borderline enlarged but not enough to mention it," (something Dr. R said was possible) as there was no mention of the cyst in my report either. And according to the radiologist that read this latest CT, it's been there since last year. Dr. R also theorized that Dr. B whipped out his trusty measuring tape and actually measured my liver to compare it himself. I'll let you pick because at this point I haven't a clue. Dr. R sent a note over to the GI dept. at BMC and hoped I would be seen within a week. We discussed the Alpha-1 issue and she gladly ordered the Phenotype test for me. I waited a bit, got poked, and left.
On Wed., Dr. R's nurse called to let me know that the soonest the GI folks could get me in wouldn't be until July 12th. I'm apparently also on the "cancellation list" which I know doesn't mean shit because no one's gonna cancel their appointment unless they're dying. And even then I bet they show up. Today I got the paperwork for my GI appt. and wouldn't you know it...I got the doctor that I was told, "Stay away from! She's an idiot!" Fabulous! I'm torn...keep the appt. and just give her a shot, or try to switch it now.
The waiting sucks though. The lab tech seemed to think I'd get the results back by the end of this week. I'm not betting on that.
As a side note, Dr. B wanted me to stay on the Gabapentin but I haven't gotten back on it yet. I have had so much stuff to do that I didn't want to chance dealing w/diarrhea again. Could've been the CT contrast...or the Gabapentin...or both. I'll wait to find out.
Saturday, June 23, 2007
Ode to my liver
Thursday (the 21st), I woke up and took the first of three syringes filled with contrast for my CT scan. I can't say it was pleasant but it wasn't the most awful thing I've drank, either. The little side effect of diarrhea was unfortunately one of the ones I had. Sweet.
I finished my last one around 12:20 p.m. and headed out for the test. I met my husband at BMC and he went in w/me for a bit. They started the IV, put me into the scanner, took a pic, pulled me out and injected the contrast. The gal warned me I would get very hot very fast. What they didn't tell me was that it usually starts in your crotch. When it felt like my hooha was on fire I thought, "That's interesting," and just relaxed and waited for the heat to rush over me. Suddenly my heart started racing and it felt like there was a huge weight on my chest. I didn't panic--thought maybe it was normal side effects--but when the recorded message told me to "take a breath" I had a very tough time doing so. Nevertheless, I was determined to finish the scan. One of the techs came back in to check on me and I told her about my heart racing. She said it was normal. I then told her about the weight on my chest. At first she tried to say it was normal as well...like a panic attack, yet I knew better. After living w/panic attacks and anxiety for a year and overcoming them, I could definitely tell the difference. For one, I wasn't scared--hadn't been scared at all--and even though panic attacks do make you feel like you are dying, my chest NEVER felt as if someone was sitting on it. Needless to say, the tech got the doctor and a flurry of activity began. I had the pulse ox on me, the doc was taking my heart rate, and there were several people watching and waiting. Throughout it all I remained calm despite being a tad nervous. Eventually the weight lifted and I told them I definitely wanted to finish, so they slid me back in and took the last image.
Afterwards I had to stay for about 20 mins. to be sure I was okay. The more time passed, the better I felt. The doctor did say I had a moderate reaction to the contrast yet felt it would be okay for me to have it again in the future. Can't say that I agree w/him on that one. While I did my best to stay calm it was not fun and not something I want to experience again. Especially knowing that allergic reactions usually get worse the more you are exposed to the thing that caused the reaction in the first place.
Dr. B's PA called that morning as well and prescribed me Gabapentin (Neurontin) to try. No pain meds, though. I was put on 100 mgs. a day for one week w/instructions to increase the dosage by 100 mgs. every week until I hit 900 mgs. At first that seemed fine until I started thinking that it would be probably 6-9 wks. before I noticed any improvement in pain. That sucked. DH picked it up for me that night and I took my first one before bed, as per the instructions, and woke up the next morning feeling very tired. I also had residual "d" from the contrast and possibly from the Gabapentin. Yeah.
As Fri. wore on I became more and more uncomfortable both under my ribs on the right side as well as in my joints and muscles. I tried picking up my results for the liver CT but they hadn't been transcribed yet. Like a good little patient, I waited to hear from Dr. B as long as I could. When the pain got very bad I gave in and called. No one there on Fridays. So I called my GP--she wasn't in that day. Neither was my ortho, but I asked if they could at least give me some pain meds to tide me over. The lady who took my call said she'd look into it and then never called back.
By the time DH got home (3'ish) I was hurting big time. I finally gave in and went to the Urgent Care center. The doc checked out my CT and found out that my liver was very enlarged...much bigger than the CT done for my gallbladder back in Feb. of last year showed. There were no signs of cancer, a tumor, or blockages--yeah! Again he palpitated my abdomen and I was incredibly tender, so the doc ordered more bloodwork as well as a urine test. Then I waited. DH and the kids came down. An hour passed and everything was back. We were taken into a room and told that everything but one liver enzyme came back normal. Which was good...and yet doesn't explain why my liver is so big. He highly recommended that I not wait to see Dr. B until the middle of July and that if Dr. B wouldn't see me to get into my GP right away. The pain is most likely from the "bag" surrounding the liver. When the liver is inflammed it can cause tenderness and fullness, both of which I'm definitely dealing with. Despite his initial misgivings of prescribing me pain pills due to the nature of my illness, the doc agreed once he knew I had been on 1 a day for awhile. I was so relieved because I honestly didn't know what I was going to do if he hadn't given me any. My legs and thighs felt like someone had run over them w/a truck.
In light of all of this I am now almost convinced I have the Alpha-1 deficiency (and quite possibly the G6PD deficiency as well) and will be highly pissed if that is indeed the case, and the reason why my liver is enlarging, since Dr. B completely dismissed it. I have spoken w/another local person dealing w/liver issues and she recommended a doctor here and one in Portland. I will be calling the local one on Mon.
Mentally I'm hanging in there but it's tough. Knowing for sure that there is something indeed very wrong w/my liver and yet no reason as to why (and thus no way to know how to fix it--at least for now) freaks me the hell out. Mostly I am calm, reading as much as I can so I know what to ask now and making me feel somewhat in control, yet at times I cry because I have a gut feeling that this is the beginning of a new path for me. I have been misdiagnosed so many times, dealt w/each diagnosis the same way (reading and waiting), accepting it to a degree, and trying to learn accept life w/the new possibilities of what lie ahead. But, there was never any true concrete proof. The AS thing was the closest to being a real diagnosis, yet I was HLA-B27 negative. There is still the slim chance I have it...or at least have some sort of joint/tendon/muscle issue in the SI joints (well, that is a given w/all of the issues I have there). Yet now when you put together the Alpha-1 bloodtests being routinely low, my liver enzymes being elevated, and now the liver enlarging you have to wonder if there's something to this. I also have many other symptoms that I've had since childhood which can be linked to the symptoms of A1 deficiency.
Things that make you go "hmmmm..." I guess we'll see what tomorrow holds.
I finished my last one around 12:20 p.m. and headed out for the test. I met my husband at BMC and he went in w/me for a bit. They started the IV, put me into the scanner, took a pic, pulled me out and injected the contrast. The gal warned me I would get very hot very fast. What they didn't tell me was that it usually starts in your crotch. When it felt like my hooha was on fire I thought, "That's interesting," and just relaxed and waited for the heat to rush over me. Suddenly my heart started racing and it felt like there was a huge weight on my chest. I didn't panic--thought maybe it was normal side effects--but when the recorded message told me to "take a breath" I had a very tough time doing so. Nevertheless, I was determined to finish the scan. One of the techs came back in to check on me and I told her about my heart racing. She said it was normal. I then told her about the weight on my chest. At first she tried to say it was normal as well...like a panic attack, yet I knew better. After living w/panic attacks and anxiety for a year and overcoming them, I could definitely tell the difference. For one, I wasn't scared--hadn't been scared at all--and even though panic attacks do make you feel like you are dying, my chest NEVER felt as if someone was sitting on it. Needless to say, the tech got the doctor and a flurry of activity began. I had the pulse ox on me, the doc was taking my heart rate, and there were several people watching and waiting. Throughout it all I remained calm despite being a tad nervous. Eventually the weight lifted and I told them I definitely wanted to finish, so they slid me back in and took the last image.
Afterwards I had to stay for about 20 mins. to be sure I was okay. The more time passed, the better I felt. The doctor did say I had a moderate reaction to the contrast yet felt it would be okay for me to have it again in the future. Can't say that I agree w/him on that one. While I did my best to stay calm it was not fun and not something I want to experience again. Especially knowing that allergic reactions usually get worse the more you are exposed to the thing that caused the reaction in the first place.
Dr. B's PA called that morning as well and prescribed me Gabapentin (Neurontin) to try. No pain meds, though. I was put on 100 mgs. a day for one week w/instructions to increase the dosage by 100 mgs. every week until I hit 900 mgs. At first that seemed fine until I started thinking that it would be probably 6-9 wks. before I noticed any improvement in pain. That sucked. DH picked it up for me that night and I took my first one before bed, as per the instructions, and woke up the next morning feeling very tired. I also had residual "d" from the contrast and possibly from the Gabapentin. Yeah.
As Fri. wore on I became more and more uncomfortable both under my ribs on the right side as well as in my joints and muscles. I tried picking up my results for the liver CT but they hadn't been transcribed yet. Like a good little patient, I waited to hear from Dr. B as long as I could. When the pain got very bad I gave in and called. No one there on Fridays. So I called my GP--she wasn't in that day. Neither was my ortho, but I asked if they could at least give me some pain meds to tide me over. The lady who took my call said she'd look into it and then never called back.
By the time DH got home (3'ish) I was hurting big time. I finally gave in and went to the Urgent Care center. The doc checked out my CT and found out that my liver was very enlarged...much bigger than the CT done for my gallbladder back in Feb. of last year showed. There were no signs of cancer, a tumor, or blockages--yeah! Again he palpitated my abdomen and I was incredibly tender, so the doc ordered more bloodwork as well as a urine test. Then I waited. DH and the kids came down. An hour passed and everything was back. We were taken into a room and told that everything but one liver enzyme came back normal. Which was good...and yet doesn't explain why my liver is so big. He highly recommended that I not wait to see Dr. B until the middle of July and that if Dr. B wouldn't see me to get into my GP right away. The pain is most likely from the "bag" surrounding the liver. When the liver is inflammed it can cause tenderness and fullness, both of which I'm definitely dealing with. Despite his initial misgivings of prescribing me pain pills due to the nature of my illness, the doc agreed once he knew I had been on 1 a day for awhile. I was so relieved because I honestly didn't know what I was going to do if he hadn't given me any. My legs and thighs felt like someone had run over them w/a truck.
In light of all of this I am now almost convinced I have the Alpha-1 deficiency (and quite possibly the G6PD deficiency as well) and will be highly pissed if that is indeed the case, and the reason why my liver is enlarging, since Dr. B completely dismissed it. I have spoken w/another local person dealing w/liver issues and she recommended a doctor here and one in Portland. I will be calling the local one on Mon.
Mentally I'm hanging in there but it's tough. Knowing for sure that there is something indeed very wrong w/my liver and yet no reason as to why (and thus no way to know how to fix it--at least for now) freaks me the hell out. Mostly I am calm, reading as much as I can so I know what to ask now and making me feel somewhat in control, yet at times I cry because I have a gut feeling that this is the beginning of a new path for me. I have been misdiagnosed so many times, dealt w/each diagnosis the same way (reading and waiting), accepting it to a degree, and trying to learn accept life w/the new possibilities of what lie ahead. But, there was never any true concrete proof. The AS thing was the closest to being a real diagnosis, yet I was HLA-B27 negative. There is still the slim chance I have it...or at least have some sort of joint/tendon/muscle issue in the SI joints (well, that is a given w/all of the issues I have there). Yet now when you put together the Alpha-1 bloodtests being routinely low, my liver enzymes being elevated, and now the liver enlarging you have to wonder if there's something to this. I also have many other symptoms that I've had since childhood which can be linked to the symptoms of A1 deficiency.
Things that make you go "hmmmm..." I guess we'll see what tomorrow holds.
Tuesday, June 19, 2007
Recently
I've been exhausted and swamped with work lately so I haven't had time to blog. I saw Dr. B last week and he seems to be quite worried about my liver. With the enzymes being elevated and me having lots of pain in my right upper quadrant, he figured it was time to do a CT and see if anything is going on. That will take place on Thursday. Should be loads of fun.
Still no name on what I have. Dr. B says that he has a few patients that make him scratch his head. Apparently I am one of them. I asked about the Alpha-1 test but he said he didn't think it was clinically significant. This was before he went into worry mode over my liver or else I would've brought it up. I guess I should have brought it up anyways but I just don't like arguing. Especially with a doctor that seems to think I don't know much. I did, however, give him my list of symptoms, test results, and what have you. He seemed both impressed and thankful for it. Who knows if he'll actually read it, if it will go in my chart, or if it will end up in the trash.
Dr. B mentioned a new med for me yet didn't prescribe it. My dad seems to think it's because Dr. B was probably waiting on the results of my bloodwork (yep, had to have more blood drawn) before he decided what dosage to give me. I called today and left a message as I have half a Percocet left. I had hoped they would prescribe me something--either the new med, the Percocet, or both. This week was/is a hectic one for me work-wise and my legs scream not too long after I wake up. I hate to take anything, yet I hate to feel like I do too. So I'm sucking it up and asking for more.
As mentioned earlier I had another trip to the lab. This time Dr. B wants to rule out Wilson's Disease and an iron overload--neither of which he (or I) think I have. Nevertheless, he's being thorough for sure. I saw he was also checking some other routine stuff. We'll see if anything comes back elevated. I purposefully did not take any pain meds in the morning so that I could both tell Dr. B exactly where the pain was and at what level, plus I wanted a "clean" system for blood draws. No idea if it helped. I figure I'll pick up my results tomorrow. I have to head down to BMC to get some stuff to drink for the CT so a quick jaunt to the hospital is in the cards.
Dr. B also gave me a fast once over. Said many tender spots are also fibro spots but didn't say I have it. Who knows. It seems the Prednisone did help. After being off of it for awhile now I can honestly say that while it definitely did not take away all of my pain and I did have to take the Percocet too, there was a slight improvement. Not enough to endure the massive GERD issues, though. My pinky benefited from the Pred and now it's back to yelling at me. Grumpy little thing.
Still no name on what I have. Dr. B says that he has a few patients that make him scratch his head. Apparently I am one of them. I asked about the Alpha-1 test but he said he didn't think it was clinically significant. This was before he went into worry mode over my liver or else I would've brought it up. I guess I should have brought it up anyways but I just don't like arguing. Especially with a doctor that seems to think I don't know much. I did, however, give him my list of symptoms, test results, and what have you. He seemed both impressed and thankful for it. Who knows if he'll actually read it, if it will go in my chart, or if it will end up in the trash.
Dr. B mentioned a new med for me yet didn't prescribe it. My dad seems to think it's because Dr. B was probably waiting on the results of my bloodwork (yep, had to have more blood drawn) before he decided what dosage to give me. I called today and left a message as I have half a Percocet left. I had hoped they would prescribe me something--either the new med, the Percocet, or both. This week was/is a hectic one for me work-wise and my legs scream not too long after I wake up. I hate to take anything, yet I hate to feel like I do too. So I'm sucking it up and asking for more.
As mentioned earlier I had another trip to the lab. This time Dr. B wants to rule out Wilson's Disease and an iron overload--neither of which he (or I) think I have. Nevertheless, he's being thorough for sure. I saw he was also checking some other routine stuff. We'll see if anything comes back elevated. I purposefully did not take any pain meds in the morning so that I could both tell Dr. B exactly where the pain was and at what level, plus I wanted a "clean" system for blood draws. No idea if it helped. I figure I'll pick up my results tomorrow. I have to head down to BMC to get some stuff to drink for the CT so a quick jaunt to the hospital is in the cards.
Dr. B also gave me a fast once over. Said many tender spots are also fibro spots but didn't say I have it. Who knows. It seems the Prednisone did help. After being off of it for awhile now I can honestly say that while it definitely did not take away all of my pain and I did have to take the Percocet too, there was a slight improvement. Not enough to endure the massive GERD issues, though. My pinky benefited from the Pred and now it's back to yelling at me. Grumpy little thing.
Subscribe to:
Posts (Atom)