Last Wed. I made the trek across the river to OHSU's G.I. clinic. The building itself was quite large and a little strange to maneuver around. I had already gotten lost along the way and was flustered, but the cherry on top was when I went to check in and got the, "Didn't they call you?" greeting. Turns out Dr. Z had a family emergency and they had tried to call me. They didn't have my new home number however they did have my cell phone and I never received a call on that. Luckily they had set me up to see another doctor. I filled out a form, got called back, weighed, vitals taken, and then waited patiently. Dr. N came in and greeted me warmly. He had already looked over my chart--not sure what info they all had on me--but needed the results of my liver biopsy. Gotta love my bigass binder of medical paperwork. I pulled it out, let him read it, he nodded, and handed it back to me. I was asked what my main concern was for the day. This was a first! I told him that I was obviously concerned about my liver issues and wanted to know what he thought was causing it. He, too, does not think I have Alpha-1 Liver disease and said he's never run across an MZ patient that was seriously ill. Now I "know" of some MZ's who have already had a transplant or are waiting for one and informed him of such. He seemed surprised and said he'd love to actually talk to him--I guess from a research stand point it interested him. Still, Dr. N guessed that these MZ's who've had serious liver disease actually had underlying, undiagnosed liver issues (such as NASH) and that when their doctor couldn't figure out the cause of the inflamed liver, saw the low levels of Alpha-1, and hence made the diagnosis of A1AD liver disease. Not so sure that's the case, honestly. Especially not after "talking" to them this weekend. I should say that he did state on more the one occasion that he could be wrong which was good to hear. Better that then, "No way it could ever be this!!" Dr. N says he believes I have NASH - Non-Alcoholic Steatohepatitis. When compared to A1AD liver disease there are some similarities such as not being able to stop the progression of the disease and not knowing how bad your liver will get. In people such as myself (i.e. not overweight, not a drinker, and not diabetic) they are wondering if it isn't a genetic condition like A1AD. There is also a chance I could develop diabetes given I most likely have insulin resistance (or so says Dr. N). In reading more about that condition it does coincide w/my hypoglycemia problems. I don't think my insulin levels have ever been checked so no way to know for sure at this point. I was told that so long as I stay on a fairly healthy diet I will most likely not develop diabetes. Of course there's no way to know for sure. :o/
For now the approach is for me to have blood tests at least twice a year. Dr. N said he could almost guarantee me that my AST's and ALT's would go back up. Apparently that is the M.O. of NASH. The levels wax and wane but aren't always indicative of damage being done. On the contrary, actually--which is really frightening--but they are seeing patients who have never had raised liver enzymes end up needing transplants from this disease. Definitely a "silent liver killer." I'll be seen at least once a year, maybe more often, and be watched. I was given an article about the correlation between MZ Alphas and the effect it has on folks w/NASH and Hep C. It seems that being just an MZ worsens the NASH or Hep C. Double whammy!
We discussed a few other things, things that either are no biggy and/or I can't recall at this present time. If I remember them and they seem pertinent then I'll add them later. For now the new diagnosis brings my total of crazy ass things that are wrong with me (and actually diagnosed) to: SIX. Go me.
Lung wise I've been a lot more wheezy, short of breath, and feeling run down. I thought for sure I was coming down w/a head cold given my symptoms but either it was the shortest head cold ever, or it's something else. I do know that the previous owners of the house we're in had cats, so that could be aggravating things as I'm very allergic to cats. Or it could just be me adjusting to the wet/damp/moldiness that is Portland. I have a tentative appt. w/Dr. B (pulmo at OHSU) scheduled for Feb. '08. Crappy. I may get moved up after I send him my Alpha-1 stuff, chest xray, and breathing test from forever ago. I also plan to write him a letter and let him know how bad things have gotten. Definitely not horrendous or anything, but I'm not liking how I'm feeling. Dr. N seems to think that w/an Alpha-1 level of 71 that I should be just fine. Once again I was told that this is quite low for an MZ. Maybe I'm actually an SZ. Need to do that damn finger prick phenotype test for the love of gawd!! Hopefully I can get in sooner and update once that happens.
Arthritis has taken on a whole new meaning in this type of weather. Luckily it has been wonderful here!! I keep waiting for that to change, the sun to go away, the gray to roll in, the rain to come, and to feel the true meaning of living west of the Cascades. And yet I've been in more pain despite the mild days. Achy bones for sure!
Head splitting open/fullness thing has gotten better from the last time I blogged, but it's still there. Seems that as soon as I start to think it's gone I do something that requires quite a bit of physical effort and bam...it's back. The fact that it does seem to be happening less is hopeful.
On a more happier note, we are loving it thus far in Portland! We do miss our friends and my dad, but overall I think we made the right decision. The kids are adjusting well at school, Ryan likes his job (even though he's only been there for two days), and I'm learning how to get around our little neck of the woods. Lexi and Kya are handling the stairs much better than we thought they would. Kya isn't impressed by having the office as their "bedroom" instead of sleeping in crates. Weirdo. Lexi loves it, but they both wake us up at night when they move around a lot as the office is right above our bedroom. We have discovered the wonders of Ikea and are hooked now. Bought brand new bedroom furniture for our bedroom and both the kiddos' rooms. Soooo cheap and yet it's heavy, feels expensive, and looks great! I think it will take Ryan at least a year to recover from putting it all together, though. ;o) It's been hard not to eat out every night w/all the restaurants to choose from. I can't say that we've had crappy food yet (knock on wood). I can't wait to show those of you planning a visit out/up here all around our favorite haunts! For now...it's late...I'm exhausted and off to bed!
Showing posts with label Alpha-1. Show all posts
Showing posts with label Alpha-1. Show all posts
Sunday, November 4, 2007
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.
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.
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