I put off upping the Sulfasalazine for a couple of days and ended up with a sore throat. This was listed as one of the "stop taking immediately" side effects, so I did. Then we went out of town and I didn't have a chance to ask my doctor about it. Why haven't I called him yet despite coming back on Sunday? Because that would make sense and we all know how I can't have anything make sense. I guess part of it is because I was busy catching up on work and the other part was that I figure that since I haven't keeled over that it's probably nothing. Still, I will be calling there tomorrow as I would like to go back on it if possible. I wouldn't be surprised if the sore throat is from reflux. I did the 14-day regimen of Prilosec and it worked well. Coincidentally (or not) after finishing the recommended amount, a few days later (about the same time I was due to up my dosage of the Sulfasalazine) I got the sore throat. So maybe it is reflux and not med side effects. Of course the crap part of all of this is that if it is reflux then that means I am screwed in that dept. thanks to the NSAID's and Pred. Just one more pill to take for a long time I guess.
I also rescheduled my liver biopsy to Aug. 9th at 11 a.m. Given that we have 3 events this weekend I figured it would be better to not be recovering from a hole being punched in my liver. Wise decision on my part as I have been swamped and stressed.
Leg-wise I have still been very achy and grudgingly taking the Percocet. I would really, really, really like to wean off of these as I do worry about becoming addicted. Regardless of whether or not I need them now doesn't matter. I don't like it and they freak me the hell out.
Hannibal Oliver (Hannibal from Dr. Lecter since he liked liver so much, Oliver from a gal who named "it" on the internets for me) is growing nicely. Not too fast, yet enough to make me shake my head and groan when I look down. When DH and I were up in Portland this past weekend we passed by a maternity store and I was THIS close to going in. The only thing that stopped me was knowing full well that anything with the word "maternity" on it automatically price jumps by about 100%. Boooooooo. For now I'll stick with my new flowy-bottom tops that I adore and curse at my snug (re: normal) t-shirts. I tell ya, I used to think I had a belly that needed toning and would lament that I looked pregnant when I wore sweatpants. Excuse me while I go smack myself upside the head. Plus, nothing is worse than seeing your belly enlarge and your boobs stay the same size. At least if they got bigger I'd be proportionate but NO...can't have that now can we? Eh, fiddlesticks.
And yes, even though I know you don't have to ask, I'm still exhausted. That part hasn't changed.
Tuesday, July 31, 2007
Monday, July 23, 2007
Still kickin'
Today will be the first day I up the Sulfasalazine from one a day to two a day. I'm hoping I see better results soon as I'm about half to 3/4 of the way through my Percocet and I don't know if my ortho will give me anymore or not. And really, I'd LOVE to be off of them even if it is just one a day. Course as I say this I know that the Sulfasalazine isn't great for my liver either. Maybe worse? Not sure. In a perfect world I wouldn't need any drugs...but this isn't a perfect world.
Physically I feel the same. Exhausted, nauseous at times, bloated, and my legs still ache insanely bad. Here's my enlarged belly:
Maternity clothes time anyone?? You can see how that far side (what looks like my left but is actually my right as this was taken in a mirror) sticks out more than the other. Hello liver!!
I can't say I'm looking forward to next Monday. I already read Harry Potter and the Deathly Hallows. Finished it in two days. Didn't want to but couldn't put it down. I'll have to find something else to read/watch for that day. Ah well...
My left eye flared up yesterday. Looked very ugly and angry. It's been awhile since the last flare so I was kind of surprised to see it red again.
I also haven't set up an appt. with a pulmonologist yet but I'm working on it. Sometimes I think my breathing issues when I'm just laying around (shortness of breath for instance) comes from my liver being enlarged. Other times I wonder if it might be due to Alpha-1 Lung disease. We'll see.
Tuesday, July 17, 2007
I'm not dead yet
Tentatively I started the Sulfasalazine yesterday and tried not to worry myself into a rash--because then how the hell would I know if it was the worry or the drugs?!!! ;o) I had taken half a Percocet in the morning and although I needed it about the same time I took the Sulfasalazine I held off to ensure that if there were any side effects I would know where it was coming from. I actually felt a tad better that night. Not nearly as achy. It is waaaaaay too early for the Sulfasalazine (man I hate typing that out) to have done anything, yet there it was. So who knows. Today I took it in the morning. I did get some mid-morning nausea that was no fun but tolerable. Thankfully the nausea wore off fairly quickly--about 2 hrs. and (knock on wood) I haven't had any rashes, itches, vomiting blood, or death. Sweet! If for some reason I suddenly drop off then chalk it up to the drugs finally killing me.
The phone rang this morning around 8:45 and was one of the gals from Dr. H's office. My liver biopsy is scheduled for July 30th at 9:00 a.m. I have to be there at 8 for some pre-biopsy bloodwork, then they'll do the "nasty," make me lay on my side for awhile (or so I've read), and I've been instructed to stay in bed the rest of the day to minimize the risk of bleeding. Thankfully I should time it about right for me to begin reading the final Harry Potter book. Yes, I realize the book comes out well before I get jabbed in the liver, yet I want to hold off as I re-read book 6 first. Or I may say "screw it" and just dive right in to Deathly Hallows. I figure I'll get incredibly bored staying in bed but I also figure I'll be sleeping a lot that day too. So maybe I shouldn't wait on starting book 7 on that day. hmmmm....
They also moved my appt. to Aug. 13th. I have to see that idiot NP again and I swear, if she so much as says anything remotely assinine again I will walk out. Apparently Dr. H will be in the clinic that day as well although it's unclear as to whether or not I'll actually see him. I guess he and the NP are collaborating and will be going over my test results together. Man do I hope I see him personally. Of course I plan to pick up my biopsy results before the appt. so I can go over them, research, and know what questions to ask. Plus I'm an impatient little shit. Course I say that now and watch...the stupid medical records red tape at BMC will put a halt to that. Fingers crossed that since it's being done at the hospital that I can access it via my medical records there. They are a billion times easier to work with down there!
I took some pics of my "baby" tonight. "Baby" meaning my huge belly. I could easily pass for being about 4 mos. pregnant. Maybe even 5. I have seriously thought about getting some maternity clothes just so I can be comfortable. It's not easy, nor fun, squeezing your big belly into jeans that fit everywhere else BUT that area. And don't even get me started on my shirts. The ones that used to be roomy and let me breathe now look like they were shrunk into oblivion. I thought getting one of those empire-waisted type tops would be great for me. They would have been except that I have to get a medium so my boobs fill the top out and normally that would leave the bottom half somewhat loose for me. Like how it's supposed to be. Nowadays, however, the boobs fit and the belly stretches the fabric taught. Not a good look. Unless you're pregnant. And I'm definitely not pregnant.
Yeah for ascites...not.
Where's the shirt that says, "I'm not pregnant. I just have a pissed off liver." I need one of those.
The phone rang this morning around 8:45 and was one of the gals from Dr. H's office. My liver biopsy is scheduled for July 30th at 9:00 a.m. I have to be there at 8 for some pre-biopsy bloodwork, then they'll do the "nasty," make me lay on my side for awhile (or so I've read), and I've been instructed to stay in bed the rest of the day to minimize the risk of bleeding. Thankfully I should time it about right for me to begin reading the final Harry Potter book. Yes, I realize the book comes out well before I get jabbed in the liver, yet I want to hold off as I re-read book 6 first. Or I may say "screw it" and just dive right in to Deathly Hallows. I figure I'll get incredibly bored staying in bed but I also figure I'll be sleeping a lot that day too. So maybe I shouldn't wait on starting book 7 on that day. hmmmm....
They also moved my appt. to Aug. 13th. I have to see that idiot NP again and I swear, if she so much as says anything remotely assinine again I will walk out. Apparently Dr. H will be in the clinic that day as well although it's unclear as to whether or not I'll actually see him. I guess he and the NP are collaborating and will be going over my test results together. Man do I hope I see him personally. Of course I plan to pick up my biopsy results before the appt. so I can go over them, research, and know what questions to ask. Plus I'm an impatient little shit. Course I say that now and watch...the stupid medical records red tape at BMC will put a halt to that. Fingers crossed that since it's being done at the hospital that I can access it via my medical records there. They are a billion times easier to work with down there!
I took some pics of my "baby" tonight. "Baby" meaning my huge belly. I could easily pass for being about 4 mos. pregnant. Maybe even 5. I have seriously thought about getting some maternity clothes just so I can be comfortable. It's not easy, nor fun, squeezing your big belly into jeans that fit everywhere else BUT that area. And don't even get me started on my shirts. The ones that used to be roomy and let me breathe now look like they were shrunk into oblivion. I thought getting one of those empire-waisted type tops would be great for me. They would have been except that I have to get a medium so my boobs fill the top out and normally that would leave the bottom half somewhat loose for me. Like how it's supposed to be. Nowadays, however, the boobs fit and the belly stretches the fabric taught. Not a good look. Unless you're pregnant. And I'm definitely not pregnant.
Yeah for ascites...not.
Where's the shirt that says, "I'm not pregnant. I just have a pissed off liver." I need one of those.
Sunday, July 15, 2007
We are family?
Given the genetic nature of Alpha-1 Antitrypsin Deficiency, I figured it would be wise to let my mom's side of the family know about it so that they could get tested if they so desired. The thing is, I haven't spoken to my mother in almost 3 yrs. Because of this, her sisters--my aunts--are not my biggest fans. A couple of them still talk to me (as in if I called one of them they wouldn't hang up on me, but we're not chatting or anything), send me Christmas cards, and stay pretty neutral. Two others (and three of my cousins) think I am one of the worst human beings on the planet. Now, I get that they have only heard my mom's side of the story and I'm sure it's dramatic and fraught with lies and how I'm just "killing" her. Thing is, all through my childhood she made it well known to me that I was in her way of being happy. If it wasn't for me she could find a good man--all the ones she dated (and two of the ones she married) didn't like kids. She was verbally and physically abusive although it wasn't horrendous. I wasn't locked in a closet and forced to drink my own urine. It wasn't nice though. Still, I did everything I could to win her approval and make her happy. One day I finally realized that it didn't matter what I did...she would never be happy. Not for herself and definitely not for me. The woman reveled in making me feel like shit. I got tired of it. Knowing her demeanor and penchant for drama I knew that trying to explain this to her like a normal human being would only result in her flying off the deep end and lots of angry words being said. I had tried once before when she came out for a visit. She ended up staying at a motel the night before she left, instead of at my dad's where she had been staying, throwing a big fit, and telling my aunts how awful I was.
That's my mom. I don't expect her to change and that's okay. I would be lying if I said that I wasn't hurt by the fact that part of my family has chosen to disown me. Growing up I was always a good kid, took care of people, and loved my aunts. For some reason they were awesome moms. Not perfect I'm sure, but man they loved their kids and loved being a mom. I wanted that. So yeah, it sucks that I don't feel like I can call one of them up and ask for advice or even just to hear how they're doing. Again...it is what it is.
I put my feelings aside and emailed my aunts and cousins to let them know what I had. I told them that it was serious, that I would most likely be put on the liver transplant waiting list, and gave them links to places where they could read more and even request a free anonymous test.
My mom called my dad the following day. No one called me. Nor emailed me. So much for family. You'd think they could put aside their differences long enough to let me know they're thinking of me. That no matter what they love me, even if they disagree with my choices as an adult. I can't say that I'll update them. If they cared enough they would've let me know. Since they don't, cest la vie.
That's my mom. I don't expect her to change and that's okay. I would be lying if I said that I wasn't hurt by the fact that part of my family has chosen to disown me. Growing up I was always a good kid, took care of people, and loved my aunts. For some reason they were awesome moms. Not perfect I'm sure, but man they loved their kids and loved being a mom. I wanted that. So yeah, it sucks that I don't feel like I can call one of them up and ask for advice or even just to hear how they're doing. Again...it is what it is.
I put my feelings aside and emailed my aunts and cousins to let them know what I had. I told them that it was serious, that I would most likely be put on the liver transplant waiting list, and gave them links to places where they could read more and even request a free anonymous test.
My mom called my dad the following day. No one called me. Nor emailed me. So much for family. You'd think they could put aside their differences long enough to let me know they're thinking of me. That no matter what they love me, even if they disagree with my choices as an adult. I can't say that I'll update them. If they cared enough they would've let me know. Since they don't, cest la vie.
Seriously
I tried "warning" the GI dept. about my A1AD so that the Nurse Practioner I was seeing could read up on it, yet it fell on deaf ears. They just assured me that if she didn't know about A1AD she would ask the doctors. And I'm seeing her why? Blah. So my appt. rolls around and I go in to see NP B. She's got a bad attitude from the start, yet I don't care...I'm just hoping she's gonna surprise me and tell me what the next step is in finding out how bad my liver is. Instead when I tell her I have A1AD she tells me, "That's a lung disease. We don't treat the lungs. You'll have to see a Pulmonologist instead." Oh yeah...here we go. I correct her and explain that A1AD can indeed affect the liver. She agrees but has to put a little "but that's EXTREMELY rare" on the end of it. Not really and does it matter? I mean if you have a patient that is A1AD, has had elevated liver enzymes for over a year, has an enlarged liver, and has tested negative for all the obvious diseases that cause liver damage does it matter if the only thing that makes sense is rare? I may be the only case she sees yet that won't change that if the Alpha-1 is causing this that it is what it is. I digress.
The moronic statements continues as she asks me about heartburn/GERD and what I'm taking for it. When she asks if I take the Prilosec w/food I tell her "No. I don't have an appetite in the morning anymore. Been that way for at least a couple of months and that's not like me." She launches into a dramatic, somewhat freaked out lecture about how I HAVE to eat. Uh...yeah, I would, if I wear hungry and not nauseous. The next words out of her mouth still have me angry and shocked. "How long have you been anorexic for?" Seriously. I was dumbfounded. First, I wear a size 8--sometimes a 6 if I go to Old Navy (love that)--and weigh roughly 135. Second, when I was in high school I had a nasty rumor spread about me that I was anorexic because I weighed 98 lbs. and the girl didn't like me. I wasn't anorexic then (I had a kickass metabolism and was very, very active) and I sure as hell am not anorexic now. The only words I could form were, "Excuse me?" and she sighed heavily and said, "Okay fine then...how long have you been without an appetite." NP B. is a real gem, I tell ya what. I later asked my dad (a nurse) if anorexic has a different clinical term that I didn't know about. He said it means not taking in proper nutrition to sustain life. Still not connecting me not having an appetite in the morning to not sustaining my life. I've tried, there are no dots.
Then NP B. had to say over and over again about how she didn't have ANY of my records and therefore couldn't do ANYTHING for me. No matter how many times I explained that my blood tests and CT scans were all done at either the hospital or the actual clinic I was sitting in at that very moment, she refused to hear me. Other doctors from the same clinic had accessed my records as had docs from outside the clinic. They had no problems. Yet I guess this was too much for NP B. to handle. She did give me a "physical" though. Lasted all of 2 mins. I think. The woman barely pushed on my side and proclaimed that she "couldn't even feel" my liver. Again, funny given that two other doctors felt my liver quite easily although they did push harder. Maybe that was the issue. (insert sarcastic smiley here)
I told NP B. that I was extremely exhausted, had quite a bit of pain and uncomfortableness in my right side, was very bloated, and had "brain fog." Her diagnosis? Unrelated to my liver. Remember, according to her there was nothing wrong with my liver as the ONE test result she could access wasn't high enough for her (but it was indeed elevated) and she couldn't feel my liver. The bloating? Oh that's from dairy. Ya know, that 1 cup of cappuccino a day I drink...yeah, that's it. Or my medicine that I've been on for over a year and never had bloating like this. Totally! No way is it because my liver is failing. The rest of the symptoms she had no answer for yet assured me she didn't think they were caused by my liver.
Taken from the American Liver Foundation website: "Alpha-1 may also appear in late childhood or adulthood and be detected because of fatigue, poor appetite, swelling of the abdomen and legs or abnormal liver tests." Now call me an idiot but why is it that I know more about liver failure than a GI Nurse Practioner? One of the other major symptoms is diarrhea. TMI folks, yet this was one of my very first symptoms that started two years ago. The GI folks think/thought it was IBS despite not having any issues before and it starting suddenly. I've also been having the big "d" again although I've been on medicine for it for a year and a half. I gotta think it's not a good sign.
NP B. did tell me to up my medicine (Questran) after she looked at my eyes. I had my dad look at them and he said there was a bit of jaundice there. Questran is commonly prescribed for jaundice (I was put on it to control "d" after my gall bladder surgery), so we can only assume that if I wasn't on it then I would be as yellow as the sun. I don't have any plans to see if this is true, though. Other than that, she said she'd look over my test results and then call me to go get more labwork done. Total.Waste.Of.Time.
Friday I called to see what I could do to get an appt. with an actual doctor. One who is, coincidentally enough, both a GI and a Hepatologist (liver specialist). Turns out NP B. already spoke with him after my appt. last week. No word on what was said or what, if anything, the plan is for me. Instead I got to find out that Dr. H. is booked until Sept. I practically begged the girl stating that I am getting worse and don't think it would be smart for me to wait that long. She was very sweet and put in an email to Dr. H. in hopes that he'll squeeze me in soon. I guess we'll see how it goes.
I don't think I posted about my follow-up visit w/Dr. B. I actually saw his PA whom I like. I am considered G6PD (Glucose-6 Phosphate Dehydrogenase) Deficient. They want me to start taking Sulfasalazine and try taking the Gabapentin again--though not at the same time. We need to watch for side effects. With the G6PDD there is a chance I could be thrown into Hemolytic Anemia. That would be bad. So I have standing orders for routine blood tests to monitor me. Hopefully this will help my achy joints/muscles with no allergic reactions and/or side effects. The PA tried to pin Dr. B. down for a diagnosis for me yet he said he wasn't ready to "pigeonhole" me just yet. :oD Irregardless he does think I have either Undifferentiated Spondylarthropy and/or Undifferentiated Connective Tissue Disorder. Arthritis...that's all I know. I haven't started the Sulfasalazine yet as I want Ryan to be home w/me in case I have a bad reaction to it. Plus this weekend was so crazy that I didn't want to take it and end up w/horrible stomach cramps, bad "d," or whatever. Hopefully I can try it out on Tues. I would love to be off the Percocet w/all the liver stuff. I'm still at 1 to 1 1/2 pills a day, which is really good considering, yet I've noticed that I'm almost having to take the 1 1/2 pills a day instead of half to one. I don't like it. I know the docs would be "oh seriously, that's nothing!" but I don't like it. Ya gotta do what ya gotta do, I know. And I wouldn't take them if it didn't feel like my freaking legs were being beaten.
I am so ready for some good health.
The moronic statements continues as she asks me about heartburn/GERD and what I'm taking for it. When she asks if I take the Prilosec w/food I tell her "No. I don't have an appetite in the morning anymore. Been that way for at least a couple of months and that's not like me." She launches into a dramatic, somewhat freaked out lecture about how I HAVE to eat. Uh...yeah, I would, if I wear hungry and not nauseous. The next words out of her mouth still have me angry and shocked. "How long have you been anorexic for?" Seriously. I was dumbfounded. First, I wear a size 8--sometimes a 6 if I go to Old Navy (love that)--and weigh roughly 135. Second, when I was in high school I had a nasty rumor spread about me that I was anorexic because I weighed 98 lbs. and the girl didn't like me. I wasn't anorexic then (I had a kickass metabolism and was very, very active) and I sure as hell am not anorexic now. The only words I could form were, "Excuse me?" and she sighed heavily and said, "Okay fine then...how long have you been without an appetite." NP B. is a real gem, I tell ya what. I later asked my dad (a nurse) if anorexic has a different clinical term that I didn't know about. He said it means not taking in proper nutrition to sustain life. Still not connecting me not having an appetite in the morning to not sustaining my life. I've tried, there are no dots.
Then NP B. had to say over and over again about how she didn't have ANY of my records and therefore couldn't do ANYTHING for me. No matter how many times I explained that my blood tests and CT scans were all done at either the hospital or the actual clinic I was sitting in at that very moment, she refused to hear me. Other doctors from the same clinic had accessed my records as had docs from outside the clinic. They had no problems. Yet I guess this was too much for NP B. to handle. She did give me a "physical" though. Lasted all of 2 mins. I think. The woman barely pushed on my side and proclaimed that she "couldn't even feel" my liver. Again, funny given that two other doctors felt my liver quite easily although they did push harder. Maybe that was the issue. (insert sarcastic smiley here)
I told NP B. that I was extremely exhausted, had quite a bit of pain and uncomfortableness in my right side, was very bloated, and had "brain fog." Her diagnosis? Unrelated to my liver. Remember, according to her there was nothing wrong with my liver as the ONE test result she could access wasn't high enough for her (but it was indeed elevated) and she couldn't feel my liver. The bloating? Oh that's from dairy. Ya know, that 1 cup of cappuccino a day I drink...yeah, that's it. Or my medicine that I've been on for over a year and never had bloating like this. Totally! No way is it because my liver is failing. The rest of the symptoms she had no answer for yet assured me she didn't think they were caused by my liver.
Taken from the American Liver Foundation website: "Alpha-1 may also appear in late childhood or adulthood and be detected because of fatigue, poor appetite, swelling of the abdomen and legs or abnormal liver tests." Now call me an idiot but why is it that I know more about liver failure than a GI Nurse Practioner? One of the other major symptoms is diarrhea. TMI folks, yet this was one of my very first symptoms that started two years ago. The GI folks think/thought it was IBS despite not having any issues before and it starting suddenly. I've also been having the big "d" again although I've been on medicine for it for a year and a half. I gotta think it's not a good sign.
NP B. did tell me to up my medicine (Questran) after she looked at my eyes. I had my dad look at them and he said there was a bit of jaundice there. Questran is commonly prescribed for jaundice (I was put on it to control "d" after my gall bladder surgery), so we can only assume that if I wasn't on it then I would be as yellow as the sun. I don't have any plans to see if this is true, though. Other than that, she said she'd look over my test results and then call me to go get more labwork done. Total.Waste.Of.Time.
Friday I called to see what I could do to get an appt. with an actual doctor. One who is, coincidentally enough, both a GI and a Hepatologist (liver specialist). Turns out NP B. already spoke with him after my appt. last week. No word on what was said or what, if anything, the plan is for me. Instead I got to find out that Dr. H. is booked until Sept. I practically begged the girl stating that I am getting worse and don't think it would be smart for me to wait that long. She was very sweet and put in an email to Dr. H. in hopes that he'll squeeze me in soon. I guess we'll see how it goes.
I don't think I posted about my follow-up visit w/Dr. B. I actually saw his PA whom I like. I am considered G6PD (Glucose-6 Phosphate Dehydrogenase) Deficient. They want me to start taking Sulfasalazine and try taking the Gabapentin again--though not at the same time. We need to watch for side effects. With the G6PDD there is a chance I could be thrown into Hemolytic Anemia. That would be bad. So I have standing orders for routine blood tests to monitor me. Hopefully this will help my achy joints/muscles with no allergic reactions and/or side effects. The PA tried to pin Dr. B. down for a diagnosis for me yet he said he wasn't ready to "pigeonhole" me just yet. :oD Irregardless he does think I have either Undifferentiated Spondylarthropy and/or Undifferentiated Connective Tissue Disorder. Arthritis...that's all I know. I haven't started the Sulfasalazine yet as I want Ryan to be home w/me in case I have a bad reaction to it. Plus this weekend was so crazy that I didn't want to take it and end up w/horrible stomach cramps, bad "d," or whatever. Hopefully I can try it out on Tues. I would love to be off the Percocet w/all the liver stuff. I'm still at 1 to 1 1/2 pills a day, which is really good considering, yet I've noticed that I'm almost having to take the 1 1/2 pills a day instead of half to one. I don't like it. I know the docs would be "oh seriously, that's nothing!" but I don't like it. Ya gotta do what ya gotta do, I know. And I wouldn't take them if it didn't feel like my freaking legs were being beaten.
I am so ready for some good health.
Tuesday, July 3, 2007
Answers
I gave in and called Dr. R's nurse on Fri. and explained that DH had gotten job offers in two completely different cities (more on that in a bit), so finding out my test results would be muy helpful if possible. She promised to call and check on them, yet I heard nothing. Thing is, she did call me that Fri.--she just called my business line and when I saw the answering machine light blinking I thought it was another client that had called. I listened to the message on Sun. and the nurse had said she tried to get the results but that they weren't ready yet. I was given the dates of Mon. or Tues.
Patiently I waited all day Mon. and resisted the urge to call and bug them again. By late morning today I couldn't handle it and I called. Dr. R called me back--I knew the answer then. She said my Alpha-1 level was very low (mine was at 71, normal is 100-200) and advised me not to smoke and definitely stay away from second-hand smoke. At this point I got a little panicked as she hadn't told me what my genotype was and didn't sound like she had the results, so I asked if there were any results that read "ZZ" or "MM" or something like that. "Oh..." she said, pausing, "Yes...M1Z. I think...wait, maybe it's 'MM.' No, that's normal. Yes, you're an 'M1Z'." I was a little shocked I guess. Part of me figured this would be another dead-end despite all my "surety's" and symptoms and blood test results. Still, I gathered my wits enough to ask that Dr. R make a copy of the paperwork for me and leave it at the front desk. She happily agreed and stated that I probably knew more about this then she did. She's probably right--no offense to her but A1AD is rare and most docs don't know much about it.
Immediately I delved into the internet reading as much as I could. I also called Ryan and left a message for him to call me as I had my test results back. Turns out the MZ gene makes me a "carrier"--obvious, right? There are more cases of liver issues w/the MZ than lung, however both can be affected, though rarely both of them together. M = normal gene, Z = severely low gene. Half 'n Half baby! Either way, not good but it could be worse. Null/Null is really shitty, while ZZ is just a step above it. Interesting stuff I'm telling ya!
Anyways...I have no doubt that the GI doc I'll see next week will be clueless about A1AD. I am seriously thinking about calling there and finding out if this doc knows anything about it because if she doesn't, it won't be worth the money. Of course the other part of me knows that this is some serious shit right now and the fact that I'm getting worse instead of better means I need to get the liver stuff figured out like yesterday. I am so bloated I look pregnant. This is a sign of cirrhosis. I have others too. I also found out that a medicine I am on is commonly prescribed for jaundice, so it's very possible that if I weren't taking this med I would be yellow. Not sure if the med is masking it, or if I don't have it. Another question for the GI doc. I am becoming more and more fatigued. Everytime I think I can't get any more worn out than I already am...BAM...it happens. I'm sure more restful sleep would help yet I have a helluva time falling asleep these days. Not that it matters. I could go to bed at 10 p.m. and wake up at 9 a.m. and still feel like I hadn't slept at all.
The job thing...DH was offered another position at the same company, only in Portland. There is also a job opening (same company) for the position he's in now in New Hampshire. We discussed the second location and while the city looks beautiful and we'd be close to Boston and places like New York, we're just not sure we'd want to "do" the winters. Plus I'd still be about an hour away from a big hospital. So, we're shooting for Portland. He submitted his resume although he's already been told he'll get the job. Now I just have to sell the biz, we have to sell the house, buy one up there, and do it all before school starts!! NO PRESSURE! Honestly, we're stoked though. Not looking forward to the process of it all, yet now my dad can have a true pick of jobs, DH can get into one that he's been interested in for awhile, I can be near a big hospital, and the kids will be closer to the coast (that they adore), OMSI, the zoo, etc. and so forth! Plus, w/the salary boost I won't have to work. The plan is for me to breed our dog if her health is fit for it (hips, eyes, and heart), keep one of her pups, and if that pup passes the health stuff when she is 2, then breed her as well. Otherwise, it's taking care of myself!! I am most likely facing a transplant, possibly soon, maybe later so I need to get in shape for whatever life throws at me.
The answer to my question as to what's wrong with me sucks...but it's an answer...and now I can move forward with doing what needs to be done to stay around for awhile.
Patiently I waited all day Mon. and resisted the urge to call and bug them again. By late morning today I couldn't handle it and I called. Dr. R called me back--I knew the answer then. She said my Alpha-1 level was very low (mine was at 71, normal is 100-200) and advised me not to smoke and definitely stay away from second-hand smoke. At this point I got a little panicked as she hadn't told me what my genotype was and didn't sound like she had the results, so I asked if there were any results that read "ZZ" or "MM" or something like that. "Oh..." she said, pausing, "Yes...M1Z. I think...wait, maybe it's 'MM.' No, that's normal. Yes, you're an 'M1Z'." I was a little shocked I guess. Part of me figured this would be another dead-end despite all my "surety's" and symptoms and blood test results. Still, I gathered my wits enough to ask that Dr. R make a copy of the paperwork for me and leave it at the front desk. She happily agreed and stated that I probably knew more about this then she did. She's probably right--no offense to her but A1AD is rare and most docs don't know much about it.
Immediately I delved into the internet reading as much as I could. I also called Ryan and left a message for him to call me as I had my test results back. Turns out the MZ gene makes me a "carrier"--obvious, right? There are more cases of liver issues w/the MZ than lung, however both can be affected, though rarely both of them together. M = normal gene, Z = severely low gene. Half 'n Half baby! Either way, not good but it could be worse. Null/Null is really shitty, while ZZ is just a step above it. Interesting stuff I'm telling ya!
Anyways...I have no doubt that the GI doc I'll see next week will be clueless about A1AD. I am seriously thinking about calling there and finding out if this doc knows anything about it because if she doesn't, it won't be worth the money. Of course the other part of me knows that this is some serious shit right now and the fact that I'm getting worse instead of better means I need to get the liver stuff figured out like yesterday. I am so bloated I look pregnant. This is a sign of cirrhosis. I have others too. I also found out that a medicine I am on is commonly prescribed for jaundice, so it's very possible that if I weren't taking this med I would be yellow. Not sure if the med is masking it, or if I don't have it. Another question for the GI doc. I am becoming more and more fatigued. Everytime I think I can't get any more worn out than I already am...BAM...it happens. I'm sure more restful sleep would help yet I have a helluva time falling asleep these days. Not that it matters. I could go to bed at 10 p.m. and wake up at 9 a.m. and still feel like I hadn't slept at all.
The job thing...DH was offered another position at the same company, only in Portland. There is also a job opening (same company) for the position he's in now in New Hampshire. We discussed the second location and while the city looks beautiful and we'd be close to Boston and places like New York, we're just not sure we'd want to "do" the winters. Plus I'd still be about an hour away from a big hospital. So, we're shooting for Portland. He submitted his resume although he's already been told he'll get the job. Now I just have to sell the biz, we have to sell the house, buy one up there, and do it all before school starts!! NO PRESSURE! Honestly, we're stoked though. Not looking forward to the process of it all, yet now my dad can have a true pick of jobs, DH can get into one that he's been interested in for awhile, I can be near a big hospital, and the kids will be closer to the coast (that they adore), OMSI, the zoo, etc. and so forth! Plus, w/the salary boost I won't have to work. The plan is for me to breed our dog if her health is fit for it (hips, eyes, and heart), keep one of her pups, and if that pup passes the health stuff when she is 2, then breed her as well. Otherwise, it's taking care of myself!! I am most likely facing a transplant, possibly soon, maybe later so I need to get in shape for whatever life throws at me.
The answer to my question as to what's wrong with me sucks...but it's an answer...and now I can move forward with doing what needs to be done to stay around for awhile.
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