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.
Showing posts with label CT scan. Show all posts
Showing posts with label CT scan. Show all posts
Monday, August 13, 2007
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!
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.
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