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.
Wednesday, August 29, 2007
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, August 13, 2007
When did patients become the bad guy?
I swear, it seems like there is something in the water here--or maybe it's just a change of times--but I am so tired of being talked down to and treated like dirt from people in the medical profession. There are a few good ones in town that do not fall under this category, mind you. However, today I was once again reminded of why I really dislike the one NP at BMC's GI dept.
Before my appt. this morning, I called the GI dept. to make sure they had all of my test results from my biopsy last week. The last thing I wanted to do was have a repeat session of NP B having a semi-fit because she couldn't "access" any of my results. The gal I talked to was able to find out that while the biopsy stuff hadn't been finalized yet, they could at least get a verbal to the doctor. So off I went. When NP B came in she started off by immediately saying, "I don't have your liver biopsy results yet." Sensing what was coming I very politely informed her of what I was told this morning as I figured it was possible she did not know about the verbal info.
"You didn't let me finish!" she retorted in one of the rudest tones I have heard. I apologized to her, though not nicely I might add. "You interrupted me!" she berated again. Once again I apologized as she walked out of the room. By this point I was so ready to leave and seething inside. I should note that I can put up with bitchiness and even rudeness to quite an extreme--but this was just assinine. NO ONE deserves to be talked to this way. Especially by someone who is supposed to have your well-being in their hands. The one thing that kept me glued to my seat was wanting to know the test results. Looking back I should've just walked out.
Finally she returned and had to get another jab in at me, "What I was trying to tell you before you cut me off," and proceeded to inform me that my biopsy results as of right now show no significant signs of liver disease. This is, obviously, good news. With that however, she informed me that she was going to be referring me back to my GP. Why?? My GP doesn't specialize in GI issues. Regardless of whether or not I have cirrhosis at this point in time does not negate the fact that something is going on with my liver. So of course we went back and forth on this issue. Her negating that I even have Alpha-1, me asking her to stake her reputation on it (her of course refusing to do that...surprise, surprise), she saying that I probably have Fatty Liver (hello...I weigh 135 and you said I had anorexia, so where's the poor diet and obesity associated with Fatty Liver??), and so it went. NP B asked how my biopsy went. When I told her all she said was, "oh." No, "How are you doing now?," or "I'm sorry you went through that," or "That seems odd, maybe we should discuss/note this,"--nothing. Just "oh." Lovely lady, really.
I tried to nail her down on a diagnosis or something. She then stated that some of her patients just have an enlarged liver and elevated liver enzymes for no reason. Well, fine, if that's me then what? What do we do? Couldn't get an answer for that one. NP B did her typical, "I don't have your (insert specific test here) result," deal but when I promptly opened my very large binder containing almost all of my lab work and offered her a copy of it she'd either magically find said test result or pretended as if she didn't hear me.
Eventually she left to get me some samples of some pills for my reflux. I could hear her complaining about me to the doctor and lo an behold, she comes back without any pills but with Dr. H on her heels. By this point I've already shut down. I'm so tired of conflicting reports (more below), arguing, and out and out arrogance and rudeness that I just don't care anymore. Dr. H goes on to say how my liver biopsy stuff looks good thus far, no signs of Alpha-1 in the liver but they sent out some samples so maybe there might be, and that the right lobe of my liver is enlarged...not the left. He tells me that I have a congenital defect that I've had since birth. Oh this gets laughable here. For one, according to the CT done back in March of 2006, my liver was normal. Other CT's I've had have never stated that my liver was enlarged at all, nor did it ever state that the right lobe is larger than the left. But in 2007 the CT now shows enlargement. So riddle me this, good doc, why was it fine a year ago and now not so fine? Wouldn't you know I didn't think about this until after the appt., so I didn't get to ask him. I did ask if having this congenital defect would cause pain. "No, typically you never know you have it." he says. So why am I in pain? No answer there. What about all my other symptoms? According to them it's most likely not related to my liver. Okay, I give them that one...maybe. With the arthritis issues there is bound to be some overlapping crap going on, but give me a break. Some of the stuff I'm going through is well-tied to the liver.
Lab tests were brought up and it sounds like they are only aware of two abnormal liver panels. I have more than that. I offer these to NP B--she walks away like she didn't hear me.
In the end I walk out with samples of pills for reflux, a follow-up appt. in 3 wks. (soooo canceling that one), and basically ready to give up. This is the only GI practice in my town and I have no faith in them whatsoever. My plan is to wait until my results are back, get copies of everything, and plan on seeing Dr. Z up at Portland when my time comes.
Re: conflicting radiology reports--confusion abounds here for me. As I stated earlier, the CT in '06 said nothing of a cyst nor enlargement. The CT I had back in June said that the cyst in my liver was unchanged from the scan showing it originally done in 2006. So it was there in '06, the radiologist just either didn't see it or think it was significant enough to put in his report. Then you fast forward to last week and again there is no mention of the cyst. Did it disappear? Did the radiologist not see it? Did he see it but not put it in the report? How can I trust any of these people? You would think that the radiologist from last week would've looked for the cyst and then put in the report, "Cyst gone" or something to that effect. Instead I'm left to wonder 1.) if there really ever was a cyst, 2.) if there was, is it gone?, or 3.) is it still there but not being noted?
Cherry on top? Ryan's car got keyed this weekend. Maybe from one of the neighbors as they seem to hate us for no apparent reason. And the dog pissed in her crate while I was at the doctor's. I'm so close to going insane.
Before my appt. this morning, I called the GI dept. to make sure they had all of my test results from my biopsy last week. The last thing I wanted to do was have a repeat session of NP B having a semi-fit because she couldn't "access" any of my results. The gal I talked to was able to find out that while the biopsy stuff hadn't been finalized yet, they could at least get a verbal to the doctor. So off I went. When NP B came in she started off by immediately saying, "I don't have your liver biopsy results yet." Sensing what was coming I very politely informed her of what I was told this morning as I figured it was possible she did not know about the verbal info.
"You didn't let me finish!" she retorted in one of the rudest tones I have heard. I apologized to her, though not nicely I might add. "You interrupted me!" she berated again. Once again I apologized as she walked out of the room. By this point I was so ready to leave and seething inside. I should note that I can put up with bitchiness and even rudeness to quite an extreme--but this was just assinine. NO ONE deserves to be talked to this way. Especially by someone who is supposed to have your well-being in their hands. The one thing that kept me glued to my seat was wanting to know the test results. Looking back I should've just walked out.
Finally she returned and had to get another jab in at me, "What I was trying to tell you before you cut me off," and proceeded to inform me that my biopsy results as of right now show no significant signs of liver disease. This is, obviously, good news. With that however, she informed me that she was going to be referring me back to my GP. Why?? My GP doesn't specialize in GI issues. Regardless of whether or not I have cirrhosis at this point in time does not negate the fact that something is going on with my liver. So of course we went back and forth on this issue. Her negating that I even have Alpha-1, me asking her to stake her reputation on it (her of course refusing to do that...surprise, surprise), she saying that I probably have Fatty Liver (hello...I weigh 135 and you said I had anorexia, so where's the poor diet and obesity associated with Fatty Liver??), and so it went. NP B asked how my biopsy went. When I told her all she said was, "oh." No, "How are you doing now?," or "I'm sorry you went through that," or "That seems odd, maybe we should discuss/note this,"--nothing. Just "oh." Lovely lady, really.
I tried to nail her down on a diagnosis or something. She then stated that some of her patients just have an enlarged liver and elevated liver enzymes for no reason. Well, fine, if that's me then what? What do we do? Couldn't get an answer for that one. NP B did her typical, "I don't have your (insert specific test here) result," deal but when I promptly opened my very large binder containing almost all of my lab work and offered her a copy of it she'd either magically find said test result or pretended as if she didn't hear me.
Eventually she left to get me some samples of some pills for my reflux. I could hear her complaining about me to the doctor and lo an behold, she comes back without any pills but with Dr. H on her heels. By this point I've already shut down. I'm so tired of conflicting reports (more below), arguing, and out and out arrogance and rudeness that I just don't care anymore. Dr. H goes on to say how my liver biopsy stuff looks good thus far, no signs of Alpha-1 in the liver but they sent out some samples so maybe there might be, and that the right lobe of my liver is enlarged...not the left. He tells me that I have a congenital defect that I've had since birth. Oh this gets laughable here. For one, according to the CT done back in March of 2006, my liver was normal. Other CT's I've had have never stated that my liver was enlarged at all, nor did it ever state that the right lobe is larger than the left. But in 2007 the CT now shows enlargement. So riddle me this, good doc, why was it fine a year ago and now not so fine? Wouldn't you know I didn't think about this until after the appt., so I didn't get to ask him. I did ask if having this congenital defect would cause pain. "No, typically you never know you have it." he says. So why am I in pain? No answer there. What about all my other symptoms? According to them it's most likely not related to my liver. Okay, I give them that one...maybe. With the arthritis issues there is bound to be some overlapping crap going on, but give me a break. Some of the stuff I'm going through is well-tied to the liver.
Lab tests were brought up and it sounds like they are only aware of two abnormal liver panels. I have more than that. I offer these to NP B--she walks away like she didn't hear me.
In the end I walk out with samples of pills for reflux, a follow-up appt. in 3 wks. (soooo canceling that one), and basically ready to give up. This is the only GI practice in my town and I have no faith in them whatsoever. My plan is to wait until my results are back, get copies of everything, and plan on seeing Dr. Z up at Portland when my time comes.
Re: conflicting radiology reports--confusion abounds here for me. As I stated earlier, the CT in '06 said nothing of a cyst nor enlargement. The CT I had back in June said that the cyst in my liver was unchanged from the scan showing it originally done in 2006. So it was there in '06, the radiologist just either didn't see it or think it was significant enough to put in his report. Then you fast forward to last week and again there is no mention of the cyst. Did it disappear? Did the radiologist not see it? Did he see it but not put it in the report? How can I trust any of these people? You would think that the radiologist from last week would've looked for the cyst and then put in the report, "Cyst gone" or something to that effect. Instead I'm left to wonder 1.) if there really ever was a cyst, 2.) if there was, is it gone?, or 3.) is it still there but not being noted?
Cherry on top? Ryan's car got keyed this weekend. Maybe from one of the neighbors as they seem to hate us for no apparent reason. And the dog pissed in her crate while I was at the doctor's. I'm so close to going insane.
Sunday, August 12, 2007
Breathing easier
Sort of anyways. The pain has gotten so much better. Last night I was able to take away the small pillow I had to tuck underneath my liver/side and actually sleep. I can't wait to get rid of the second pillow under "my" pillow. Not a big pillow fan. I also drove some today and only had a slight twinge when I turned around to look behind me as I was backing out of a parking space. I've had to continue taking the Percocet as my legs have been killing me again. Writing a mental not to myself to actually call my rheumy tomorrow and let them know that I stopped the Sulfasalazine and haven't been able to start it back up again. Let's see if I remember.
The reflux has been horrible. Today I got some nasty pain right under my breastbone that scared the shit out of me. Lasted for about 20 mins. or so and finally went away after I laid down for a bit. I had taken my second half of a Percocet for the day prior to it so maybe it was a reflux issue...or maybe it was something else. Either way the pain level went up to at least an 8--it was that bad. I was very close to making Ryan take me to the ER. Stuff like that annoys me as I really have no idea what is "serious" and should be checked out right away and what is typical weird pains that I'm going to get with everything that is going on. I will mention it to the GI people tomorrow yet I expect they will blow it off. Or maybe I'll be proven wrong.
Hey guess what? I'm STILL exhausted! :o) Surprised? Didn't think so. Having that biopsy took a lot out of me. So much so that I had to cancel a BBQ I was really looking forward to and have scheduled and rescheduled more times than I care to admit. I really suck as a friend these days. While I want more than anything to hang out, eat good food, and have fun I just can't. The mere thought of doing anything more than lying around makes me that much more tired...and depressed. Two of my good friends haven't even called to see how my biopsy went, or how I've been, or even just to chat, which makes me sad. The one friend who I keep canceling on called on Fri. and it meant so much to me. She "gets" what I'm going through as she has health issues too. And even though I've been so flaky she still took time out of her busy day and away from her family to let me knows she cares. A true friend means a lot to a person who is sick, let me tell ya. It's hard having an illness that seemingly robs you of yourself. You start to feel as if you're a burden to your family and as if no one "gets it." Friends tend to disappear because they get sick of hearing the same shit from you even though they ask how you're doing. And really, who could blame them? No one wants to hang out with someone who has no energy to do a lot, or who is always in pain. I try to be upbeat and hide a lot of what is inside--which is very hard for me as I'm an open person--yet I don't want to be the Debby Downer of my friends either. It's tough when your life is consumed by pain and illness to have much else to talk about. Especially when you no longer are truly living, you're just being.
The reflux has been horrible. Today I got some nasty pain right under my breastbone that scared the shit out of me. Lasted for about 20 mins. or so and finally went away after I laid down for a bit. I had taken my second half of a Percocet for the day prior to it so maybe it was a reflux issue...or maybe it was something else. Either way the pain level went up to at least an 8--it was that bad. I was very close to making Ryan take me to the ER. Stuff like that annoys me as I really have no idea what is "serious" and should be checked out right away and what is typical weird pains that I'm going to get with everything that is going on. I will mention it to the GI people tomorrow yet I expect they will blow it off. Or maybe I'll be proven wrong.
Hey guess what? I'm STILL exhausted! :o) Surprised? Didn't think so. Having that biopsy took a lot out of me. So much so that I had to cancel a BBQ I was really looking forward to and have scheduled and rescheduled more times than I care to admit. I really suck as a friend these days. While I want more than anything to hang out, eat good food, and have fun I just can't. The mere thought of doing anything more than lying around makes me that much more tired...and depressed. Two of my good friends haven't even called to see how my biopsy went, or how I've been, or even just to chat, which makes me sad. The one friend who I keep canceling on called on Fri. and it meant so much to me. She "gets" what I'm going through as she has health issues too. And even though I've been so flaky she still took time out of her busy day and away from her family to let me knows she cares. A true friend means a lot to a person who is sick, let me tell ya. It's hard having an illness that seemingly robs you of yourself. You start to feel as if you're a burden to your family and as if no one "gets it." Friends tend to disappear because they get sick of hearing the same shit from you even though they ask how you're doing. And really, who could blame them? No one wants to hang out with someone who has no energy to do a lot, or who is always in pain. I try to be upbeat and hide a lot of what is inside--which is very hard for me as I'm an open person--yet I don't want to be the Debby Downer of my friends either. It's tough when your life is consumed by pain and illness to have much else to talk about. Especially when you no longer are truly living, you're just being.
Friday, August 10, 2007
That sucked
I'm alive but I can't say that I EVER want to go through that again. I honestly went in thinking it was going to be nothing compared to my bone biopsy and ended up surprised at how much pain I was in. From the beginning...
Ryan and I arrived at check-in a little before 10 a.m. Went through the paperwork, then the lab folks came down and drew some blood to check my clotting factor. While we were waiting we looked over the reports by NP B (the one I can't stand). It was obvious she knows nothing of Alpha-1 and again referred to me being anorexic. Whatever. I got a little heated over that. After I got the first poke we went down to radiology and waited a bit. They came and got me, took me into the room, went over everything, and started the scan. During this time they were waiting on the results from the bloodwork so we hung out for a bit. Next thing I know I'm having the IV started, getting more u/s scans done, and the doc comes in. He talks me through everything, scans me as well, marks the area, and we get down to business.
The lidocaine stung a bit as usual then the versed and fentanyl kicked in so I was relaxed. The first couple of punches I didn't feel at all. Just a little click and voila. Around the 3rd or 4th punch the pain hit big time. Tears were flowing and it took all I had not to writhe around on the table. They stopped everything immediately and I was sent down for a chest xray. My arm felt like it was being ripped off and my liver was equally pissed. The only thing I could equate the pain and feeling to was labor--10 cms. labor. I would've done anything to make it stop. I didn't cry during my bone biopsy and I didn't cry when I was 10 cms. dilated in natural labor with Megan. But I cried yesterday. The nurse had given me more fentanyl but it didn't do a thing. For the chest xray they had to sit me upright which was oh-so-fun.
Thankfully I didn't have a collapsed lung and there were no signs of bleeding. Unfortunately they couldn't figure out why I was in so much pain. The only thing they could surmise was that given my liver is enlarged and already causing pain that it was heightened by being poked. Later the radiologist said the bag surrounding the liver may have torn as well which would cause intense pain. The nerves that run up to the right shoulder were obviously angry. Honestly I think the shoulder pain was worse than the liver pain.
I was given morphine which finally allowed me to breathe again and sent down to extended recovery. Typically they keep you for 2 hrs.--I was there for 4. While there I was given another shot of morphine and then followed that up with two vicoden. I don't think I've ever had that many pain meds in me. Ever. The pain was going back and forth between 6-9 and for awhile I thought that moving made the pain come back. I had dropped my vicoden and when I sat up a bit to see where it went, I was in agony again. Tears, "ow's," and more swearing that I would never do this again. Before they released me I was sent down for a CT as my pain level was still 7-8. That sucked big time. Raising my arms above my head and having to breathe was almost impossible. I did it, though. I cussed quite a bit too. Again the CT looked normal which was a relief and again the radiologist said that he must have really irritated my liver and the nerves around it. We agreed that I should go home and see if I could get rest there.
Home at last. Had a few "flares" that brought me to tears and quickly discovered that laying down brought on the most amount of pain. Around 8:30'ish I had Ryan put on a movie for me in our bedroom and attempted to lay in bed. That didn't work out so well. Once again I was crying, saying "ow" over and over again, and in horrendous pain. I had him adjust the pillows and grab another one off the couch which he wedged under my right side and the pain lessened tremendously. Megan hung out with me and watched Steel Magnolias for about an hour. I took a percocet, then waiting a half an hour and took another half. After that kicked in I was able to sleep some. I did wake up quite a bit with an itchy belly or a tweak here and there, but overall it was so much better than I had envisioned.
Ryan took today off so he could take care of the kiddos and help me out. I'm feeling so much better today than yesterday. Still sore but nothing like yesterday--not even close! I really hope they find something from this because I have no desire to go through another liver biopsy. Not without pre-emptive morphine dosing!
Ryan and I arrived at check-in a little before 10 a.m. Went through the paperwork, then the lab folks came down and drew some blood to check my clotting factor. While we were waiting we looked over the reports by NP B (the one I can't stand). It was obvious she knows nothing of Alpha-1 and again referred to me being anorexic. Whatever. I got a little heated over that. After I got the first poke we went down to radiology and waited a bit. They came and got me, took me into the room, went over everything, and started the scan. During this time they were waiting on the results from the bloodwork so we hung out for a bit. Next thing I know I'm having the IV started, getting more u/s scans done, and the doc comes in. He talks me through everything, scans me as well, marks the area, and we get down to business.
The lidocaine stung a bit as usual then the versed and fentanyl kicked in so I was relaxed. The first couple of punches I didn't feel at all. Just a little click and voila. Around the 3rd or 4th punch the pain hit big time. Tears were flowing and it took all I had not to writhe around on the table. They stopped everything immediately and I was sent down for a chest xray. My arm felt like it was being ripped off and my liver was equally pissed. The only thing I could equate the pain and feeling to was labor--10 cms. labor. I would've done anything to make it stop. I didn't cry during my bone biopsy and I didn't cry when I was 10 cms. dilated in natural labor with Megan. But I cried yesterday. The nurse had given me more fentanyl but it didn't do a thing. For the chest xray they had to sit me upright which was oh-so-fun.
Thankfully I didn't have a collapsed lung and there were no signs of bleeding. Unfortunately they couldn't figure out why I was in so much pain. The only thing they could surmise was that given my liver is enlarged and already causing pain that it was heightened by being poked. Later the radiologist said the bag surrounding the liver may have torn as well which would cause intense pain. The nerves that run up to the right shoulder were obviously angry. Honestly I think the shoulder pain was worse than the liver pain.
I was given morphine which finally allowed me to breathe again and sent down to extended recovery. Typically they keep you for 2 hrs.--I was there for 4. While there I was given another shot of morphine and then followed that up with two vicoden. I don't think I've ever had that many pain meds in me. Ever. The pain was going back and forth between 6-9 and for awhile I thought that moving made the pain come back. I had dropped my vicoden and when I sat up a bit to see where it went, I was in agony again. Tears, "ow's," and more swearing that I would never do this again. Before they released me I was sent down for a CT as my pain level was still 7-8. That sucked big time. Raising my arms above my head and having to breathe was almost impossible. I did it, though. I cussed quite a bit too. Again the CT looked normal which was a relief and again the radiologist said that he must have really irritated my liver and the nerves around it. We agreed that I should go home and see if I could get rest there.
Home at last. Had a few "flares" that brought me to tears and quickly discovered that laying down brought on the most amount of pain. Around 8:30'ish I had Ryan put on a movie for me in our bedroom and attempted to lay in bed. That didn't work out so well. Once again I was crying, saying "ow" over and over again, and in horrendous pain. I had him adjust the pillows and grab another one off the couch which he wedged under my right side and the pain lessened tremendously. Megan hung out with me and watched Steel Magnolias for about an hour. I took a percocet, then waiting a half an hour and took another half. After that kicked in I was able to sleep some. I did wake up quite a bit with an itchy belly or a tweak here and there, but overall it was so much better than I had envisioned.
Ryan took today off so he could take care of the kiddos and help me out. I'm feeling so much better today than yesterday. Still sore but nothing like yesterday--not even close! I really hope they find something from this because I have no desire to go through another liver biopsy. Not without pre-emptive morphine dosing!
Wednesday, August 8, 2007
Wee bit nervous
Just a bit. Not a lot. Not scared of the pain or anything, more the possible complications part. My dad will be staying with me and the kids in the afternoon just to be safe. Yay for dad's who are nurses too! :o)
As a side I got to shoot the cutest little girl today and her mom and dad. I was worried I would be too exhausted to hang in there but turns out that it really perked me up and made my day bright! Yay for adorable babies who have cool moms!!
As a side I got to shoot the cutest little girl today and her mom and dad. I was worried I would be too exhausted to hang in there but turns out that it really perked me up and made my day bright! Yay for adorable babies who have cool moms!!
Tuesday, August 7, 2007
Countdown
T-minus 1 day, 12 hours and counting until I get holes punched into Hannibal Oliver. I talked to a tech at the hospital yesterday and he informed me I would not be having a trans jugular biopsy (he was shocked I even knew what that was), would be getting good drugs, and would be able to sit up (and even pee if need be) in the recovery room. I may actually get some oh-so-tasty hospital food. Now what more could a girl ask for?! Ryan will be with me the whole time. The kids will be at my dad's, then he'll return them when I get settled back in. That way they can help me out as need be, which shouldn't be much.
I thought for sure I was going to die this past weekend. Between my incredibly physically demanding Fri.-Sun. schedule and the stress that it all brought, I also woke up Sat. morning around 4:00 a.m. having an apparent panic attack. It had been so long since I had one that I thought something else must've been horribly wrong. My heart was racing, I felt tingly and like I was on fire, and was convinced I would end up in the ER. I did my best to stay calm and eventually fell back to sleep. When I mentioned this to my dad that day he said it sounded like a panic attack and wasn't surprised I'd had one given all that we were doing work-wise.
Going out of order here--I also had a hideous migraine of sorts on Fri. while decorating. When I sneezed it felt like my head was going to break open. Not fun at all. My dad actually got worried. Said I should mention it to my doctors. This isn't the first time, however I was able to knock it out with one Advil. Shocked the hell out of me! I should've known it was coming as I had a bad pain behind my right eye and that particular headache seems to get me back there as well. Instead of being in the front, it's all located towards the base of my skull, more so on the right side than the left, and evil. My right eye has been a little "flarey" as of late too.
On Sun. I hit a wall. Big, brick, and not moving. I took a nap Sun. day after we finished working and did lunch. Then that night I was in bed around 10 p.m. and slept until after 8 a.m. I took a little doze on Mon. and was actually up until after 11 p.m. because we watched a movie. I've done nothing but want to sleep since this weekend. I also had a bout of nausea that was worse than any I've had thus far. I was so sure that my dinner wasn't going to stay put that I didn't venture far from the bathroom.
My throat is still hurting at various degrees. I'll be mentioning it to my GI people when I see them next week. My guess is that I have an ulcer or am getting one or just have really bad reflux. This stuff sucks.
I thought for sure I was going to die this past weekend. Between my incredibly physically demanding Fri.-Sun. schedule and the stress that it all brought, I also woke up Sat. morning around 4:00 a.m. having an apparent panic attack. It had been so long since I had one that I thought something else must've been horribly wrong. My heart was racing, I felt tingly and like I was on fire, and was convinced I would end up in the ER. I did my best to stay calm and eventually fell back to sleep. When I mentioned this to my dad that day he said it sounded like a panic attack and wasn't surprised I'd had one given all that we were doing work-wise.
Going out of order here--I also had a hideous migraine of sorts on Fri. while decorating. When I sneezed it felt like my head was going to break open. Not fun at all. My dad actually got worried. Said I should mention it to my doctors. This isn't the first time, however I was able to knock it out with one Advil. Shocked the hell out of me! I should've known it was coming as I had a bad pain behind my right eye and that particular headache seems to get me back there as well. Instead of being in the front, it's all located towards the base of my skull, more so on the right side than the left, and evil. My right eye has been a little "flarey" as of late too.
On Sun. I hit a wall. Big, brick, and not moving. I took a nap Sun. day after we finished working and did lunch. Then that night I was in bed around 10 p.m. and slept until after 8 a.m. I took a little doze on Mon. and was actually up until after 11 p.m. because we watched a movie. I've done nothing but want to sleep since this weekend. I also had a bout of nausea that was worse than any I've had thus far. I was so sure that my dinner wasn't going to stay put that I didn't venture far from the bathroom.
My throat is still hurting at various degrees. I'll be mentioning it to my GI people when I see them next week. My guess is that I have an ulcer or am getting one or just have really bad reflux. This stuff sucks.
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