I know I'm gonna leave stuff out

When I get busy and forget to blog I might as well just start over with the next doctor's appointments as it is a given I will not remember most...or half...of what has happened. Nature of the beast I guess. But let's see...here is what I DO remember:

I had my abdominal u/s and my spleen was back to normal. I guess when they wait almost 3 weeks that's what happens. Of course I'm relieved as this means that the spleen is one less thing I have to worry about...for now. My liver is still inflamed and fatty, although I do not know if it was worse or the same. The MA, who was the one that told me my results, didn't seem to know either. I was put on to 2000 mgs. a day of Salsalate. Salsalate is an NSAID. NSAID's and I do not get along. My rheumy took me off the Percocet and prescribed Vicoden in hopes of controlling the pain (if the Salsalate didn't work) with less Tylenol to bug my liver. However, I gotta wonder how 2000 mgs. of Ibuprofen, which is way worse for your liver, is better than 325 mgs. of Tylenol?! I have to take partial "blame" in that I told Dr. S I wanted to get off of the painkillers if at all possible. So I think she's trying to accomplish that for me. But at this point I'm now re-thinking this given the toxicity is higher with the NSAID's and they kill my stomach. The crap part of it all is that I NEED something that is anti-inflammatory to see if that will reduce the pain. Yet if I can't take it what's a girl to do? My stomach has been quite sore/tender for over a week now and I did take the Salsalate for one day (big whoop, right?) but stopped when I found out it was an NSAID. For now I'm trying to "heal" my stomach and then give it a shot.

But weirdness...when I talked to the MA about my abdominal u/s results I asked if Dr. S wanted me to schedule a follow-up appt. for my bone/joint issues. The MA checked Dr. S's notes and said, "Nope. Unless you have the red, swollen joints again." Uhhh...okay. So like no follow-up appt. ever? My dad was extremely bothered by this given the fact that Dr. S has prescribed me medicine, and as such is treating me, yet isn't going to see how things are going. Hell, even Dr. B (the rheumy from Bend) scheduled me in every 4-6 wks. I'm not sure what to think of it. I like Dr. S, thought she was thorough, was impressed she found the low levels of Vitamin D, and now this. I think I suck at picking doctors. :o/ We'll see what, if anything, happens after I have my Vitamin D levels rechecked sometime next week as this Thurs. is my last dose of the mega D.

Moving along to the next "issue." I had my follow-up appt. w/Dr. J the pulmo. I've been put onto Singulair and Intal (when it comes in...the pharmacy had to order it). Gotta keep up with the PFM readings to see if these meds work. I've taken two doses of the Singulair and haven't noticed any effect, but it's not a steroid so I'm guessing it's going to take awhile. The upside is that I'm not feeling like crap because of it. I am, however, battling a head cold that's been going around everywhere so who knows. :oD

And finishing up with...the appointment w/the Hepatologist, Dr Z. What I hadn't had a chance to blog about was that the clinic where Dr. Z is at said I needed to see Dr. N, as he is who I originally saw. Of course I was completely against that and told them that I would just go to another clinic. I called a place that had several doctors who had been recommended in a recent magazine and started the process to get in to see one of the Hepatologists. But then a scheduler at Dr. Z's office came through. She had fought hard to get me in and the clinic coordinator finally agreed to let me see Dr. Z. Personally, I think it's shitty and incredibly stupid that this was even an issue to begin with. I could see if I wanted to switch docs just for the hell of it...I guess...yet I had a valid reason for not wanting to see Dr. N again. I told them he had brushed me off and made me feel stupid. Why on Earth would I want to be seen by him again? And why couldn't I see another doctor, let alone the doctor I was originally scheduled to be seen by anyways? /End rant. So thank you, Janelle (I think her name is), for fighting the good fight for me, a person you've never met but felt compelled to help. My appt. with Dr. Z isn't until April although I'm on the cancellation list for him as well. Good news is that because my spleen is okay right now I can wait to be seen. I will say that my liver has been torturous to me lately. Lots of pain, bile diarrhea, and nausea. My right side still hurts every now and then and radiates to my back and down towards my hip. Curious to see what Dr. Z has to say about it.

Wow...maybe I didn't forget anything! But then how would I know, right? ;o) This weekend some friends of ours and their kiddos came up to visit us. Their kids just so happen to be the best friends of our kids. Clear as mud? Anyways, Ryan and I offered to keep Colton, Makaila, Rachelle, and Hayley overnight so that Tiffani and David could have a night off and our kids could catch up on some much needed friend time. Although the constant running up and down the stairs and extra work took a heavy toll on me (I'm still incredibly sore and worn out), it was soooo worth it! The kids loved every minute of it and it was nice to have the house filled with craziness for a bit. They are all really good kids, and despite a bit of mischief from the girls, everyone got a long well and hated to say goodbye. I had every intention of sleeping most of the day today but alas, our TV needs to be looked at again (they've already cleaned it, replaced the light engine twice, and it's messed up once more) so I was awoken at 8:30 by the repairman calling to let me know he'd be here between 1 p.m. - 4 p.m. The kids are off school yet have been total dolls today! Thank God! lol Maybe I'll sleep all day tomorrow.

Or not.

Passed? Failed?

The first Lung Function test I had was easy peasy. Basically I had to breathe into a plastic cylinder hooked up to a big machine several times, sometimes normal breathing, sometimes blowing out hard and fast, sometimes sealed in a chamber, sometimes sitting outside of it. There was no albuterol, nor other drugs to affect my breathing so I didn't have to worry about being turned into a shaking pile of Jell-O after the fact. The tech was very sweet. We chatted about kids, marriage, mothers, and everything in between. When the test was over it seemed like I didn't have COPD or emphysema--which is awesome--but I guess we'll see. I grabbed a salad from the hospital's cafe. And man, I hate eating alone. Like really abhor it. It's not so bad when I have something to read, but when I don't and I have to just sit there staring at my food, or the table, or the wall...well, I get lonely. So I inhaled the surprisingly tasty chicken and greens then found a comfy couch to hang out on and played my DS while I waited for my next appt. Yeah, I have a DS. A pink one. I played Sudoku...love that game.

Next up was the chest CT. Also took no time at all especially since I wasn't given any contrast.

The following week I went back for the Methacholine Challenge test. I still find it fascinating that they can introduce a chemical into your lungs that restricts the airways. Just crazy to me. We started off doing a baseline. I was below what I had been the week before and had noticed that I had felt tight in my chest that day--made sense. Then she gave me a dose of the methacholine. Re-checked my breathing, another dose, etc. and so forth. After the fourth dose and breathing check I was given albuterol to open me back up. Although it lifted the extra tightness and heaviness and allowed me to breathe easier, it still didn't make me feel like, "FINALLY...I can truly BREATHE again!!" Just brought me back to what I had been before we started the test. Bummer. I think I have reactive airway disease--asthma--but we'll see what the doc says tomorrow.

Thus far I have taken three doses of the mega Vitamin D and continue to feel some improvement, yet still having bone pain. I seem to be able to stave off taking the Roxicet until later in the afternoon, though. Although some days I wake up in pain and that's never fun. Grin and bear it, baby!

I'll report back after the visit w/Dr. J tomorrow. He did have my Alpha-1 levels and liver enzymes rechecked as well so we'll see what those show. As a side note I received the results from the MUSC study regarding my phenotype re-test. I am still an MZ with a level of 18 uM. My dad is an MM so looks like the Z gene came from my mom's side of the family. We are now going to have my husband tested to see what his A1 status is and then probably wait until the children are older before we have them tested. I'm sure Ryan is an MM which means the kids will either be MM or MZ. It would be really, really awesome if they were both MM. Truly.

NASH

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!

Dust sucks

Truly, Central Oregon is horrible for dust. Given it's so dry (of course I say this as it is pouring down rain right now) dusting becomes more of a guideline than a rule. I dust and the next day it looks like I haven't run a rag over the area in about a month. With the upcoming move we've been pulling stuff out, going through it, and suffocating from the layers of crap we've stirred up. I swear, I haven't been this short of breath for a long time. Ryan's been hacking, the kids have been fighting runny noses, even the dogs have been sneezing. It is definitely not good to be breathing this junk in, not that we have a choice per se (it's been too cold to open the windows and doors, although I have here and there), but it's really bad for me. The weird weather hasn't helped either. Dampness and cold mixed with dry heat gets me hacking. I really am interested in hearing what the pulmonologist up in Portland has to say. While I don't relish the idea of being on an inhaler, I am ready to be able to breathe better one way or another.

I saw Dr. A's assistant last week and she was wonderful as well. I honestly can't say enough good things about Desert Orthopedics. Seriously, if you need an ortho call them. I have had nothing but wonderful experiences with them. They treat me like a human, they listen to me, they're honest with me, and they make you feel like you on part of the team--which you are (duh)--and that they're there to help you. Unfortunately I had some bad news. The first was that I could still keep having side effects from the SI joint injections for a few more weeks. While they symptoms have decreased, I am still having issues (more later). The second part was that as of now we've basically reached the end of the line treatment-wise for my problems. She did recommend trying an SI joint belt and put a call into Rebound for me. Now I just have to follow-through and get fitted for one. I meant to do it earlier this week, yet it flew by at amazing speed. Put it on my to-do-before-I-move list! I knew there weren't many treatment options for my SI joints. Dr. B at OHSU warned me of this from the get-go. Dr. A warned me as well. Being an optimist I had hoped to get relief somewhere along the line, but it isn't to be. :o( They did say they would continue my Percocet at least for a little while in case the new doctor doesn't want to prescribe it at first. That was like music to my ears. As much as I hate taking it, the cold damp weather has made it an absolute necessity. I have tried skipping a day here and there and it usually ends up making the pain worse the following day. I was told this is a "rebounding" issue--something like that--and not uncommon for folks w/chronic pain. Given my dosage is still low that's very good. Most folks build up a tolerance to painkillers and have to take more. I have no idea how long I'll be able to get away with taking 1/2 to 1 a day, but hopefully it will be for a long time. Or at least until something else I get on takes the pain away, or to a manageable level, and I can wean off the Percocet. I will keep wishing for that as long as there's that chance!

High blood pressure...it seems that although I am feeling better, I continue to have issues w/the elevated blood pressure. Anytime I do any type of exertion the left side of my head feels like it is going to split open. We are guessing it's from my blood pressure being wonky and hoping it goes away very soon. There is nothing worse than trying to do things quickly and feeling as if you are having a stroke. I guess if it keeps up I'll see a neuro up in Portland just to be safe. But really, I just don't want to know anymore. There's enough wrong with me to last a lifetime...and for about 12 people.

Medicine...off the Sulfasalazine again. Had breakthrough reflux, still am actually, so I stopped it. Hopefully the next rheumy I see can figure something else out that will work quickly and not cause problems. Or my GI doc can get my reflux issues sorted out. M.D. at the ortho's office gave me some samples of Zanaflex and a 'scrip for Trazadone to see if either one of those would help me sleep better. The Zanaflex made me sleepy but my brain kept running. I haven't filled the Trazadone yet, however I'm thinking of giving it a try. Would be nice to lay down and drift off to sleep instead of laying there for an hour or so running through the days events, or what needs to be done tomorrow, or what I forgot to do.

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.