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.

Sometimes technology sucks

Lately I have this thing where I get a date in my head and it gets stuck. I convince myself that an appointment I have scheduled (for instance) is on "xyz" date...even when it isn't. I can't tell you how annoying this is. I did this with my appt. for Dr. B (the Alpha-1 pulmo). I was certain it was on Feb. 4th, but when his office called two weeks ago to request that I send them some more info, I asked when my appt. was just to be sure. Feb. 1st...8:40 a.m. Whew, good thing I asked! So I put it into my Thunderbird mail calendar thingamabob and added a reminder to it. Days passed, new stuff cropped up, and I slipped back into thinking the appt. was on the 4th. When I didn't get a reminder phone call for Fri. I thought nothing of it. Friday came and went (with a phone call from Dr. S...more on that later), Saturday was half over and I started questioning when I was supposed to see Dr. B. I pulled up the calendar and there was nothing listed for the 4th...or the 1st...or anywhere for that matter. Everything was GONE. I went into the living room and asked Ryan to check the calendar on the laptop and sure enough, there was nothing listed. After some checking it appeared as if a software glitch ate all of our entries, including my appointment w/Dr. B which was (obviously) on the 1st, not the 4th. I cried. I had been waiting for this appt. for over 4 months and because of a glitch, both from the computer and from the clinic not calling to remind me, I missed it. Don't get me wrong, I should have written it down as well. Lesson learned.

Today I called and explained what had happened. The receptionist was extremely kind and did her best. She got ahold of Dr. B and asked if he would come into the clinic for an extra appt., yet he wouldn't. He's also booked out until May. Yep...May. So I'll be waiting forever once again. I'm on the cancellation list just in case, although Dr. B is rarely in clinic so I doubt anyone else will be as stupid as me and not show up. Needless to say I am tattooing the date for this appt. on my forehead instead of trusting my computer. Sigh...

One good thing did take place on Fri., though. Dr. S called me back after I left another message for her and we went over the recent findings. She spoke with a bone specialist/radiologist (something like that) again regarding my SI joints. He told her that what I have is degenerative, not related to the cysts/lesions in my pelvis, maybe caused by childbirth (??), and that he wants to see my MRI from last year. I told her I'd have them send it up so he can look it over and we'll go from there I guess. Dr. S also put in an order for me to schedule an u/s for my liver, spleen, veins, et al--which I did today and will be going under the Doppler this Thurs. In addition to all of that I got a referral back to the gastro docs. I specifically requested NOT to see Dr. N again, however. When I called the gasto folks today to get scheduled they put me in w/Dr. Z who I was originally supposed to see way back when. But...like Dr. B, Dr. Z is a busy man. So busy in fact that his earliest appt. is in JUNE! Once again I was put on the cancellation list and the gal I spoke with said she would also speak to the doctor to see if he can get me in earlier. If not I'm seeing someone else. Both Dr. S and the doc I saw at the Immediate Care clinic were quite adamant I be seen a.s.a.p. The person I talked to said they hadn't received a referral from Dr. S yet, so maybe when she sends it that will speed things along. I'm also going to pick up my records from the Immediate Care place and send them on to Dr. Z so that he knows what's going on. Fingers crossed that I can see him by next week.

The pain on the left side (spleen) isn't as bad as it was the weekend before last, or maybe I'm getting used to it, but it's still pretty painful. My right side (liver) is really uncomfortable. I'm still battling the nausea and fatigue. Fatigue is better, nausea is too, yet they're there. I think I've lost weight, though...bonus!

Lung-wise my Peak Flow Meter readings are holding around 350-400. I'm no longer feeling the effects of the corticosteroids from the Advair, thankfully. I go back to Dr. J (the pulmo) in another week or so. More updates when that happens.

More petechiae have appeared on my arms and now on my legs. Dr. S was at a loss as to why they are showing up when my platelets are okay. Who knows with me! :o/ I'm just glad I didn't need a transfusion...knock on wood.

Still waiting

I left a message for Dr. S's MA on Monday morning and heard nothing. Tuesday passed without a phone call as well. I slept quite a bit both days, yet not as much as I had on Saturday and Sunday. Yesterday I had pulled up the OHSU website and was about to call the rheumatology department at 3:30'ish p.m. when the phone rang. It was Dr. S's MA wanting to know what all was going on. I filled her in, she told me she would pass it on to Dr. S, and we hung up. Later she called back for more info and again assured me that all of this would be on Dr. S's desk. I didn't hear anything last night, not that I thought I would.

I'm assuming that Dr. S is looking into everything and even talking with colleagues to see where I should go next. I do like her...I just wish the MA communicated more. Anyways, I will update when I have more information to update with. For now I am still upright and the pain isn't nearly as bad as this past weekend, although it is still there, and the nausea is hit or miss.

When it rains it pours...

So true that statement is. Where to start? Lungs...we'll hit that first. I stopped the Advair and spoke with Dr. J's nurse and she said to stay off of the Advair, continue with the Peak Flow tracking, and Dr. J would go over things at my next visit. I have been told Spiriva might be a good option for me so I'll ask about it when I see Dr. J.

Around Wed. of last week I noticed several spots on my arms that looked like pin pricks. I have seen a couple of these here and there over the past month or so, yet never this many. I had read something about petechiae on the Alpha-1 liver email list and on Fri. decided to research about it. Unfortunately all I could find picture-wise, for the most part anyway, were purpura which are much larger and more abundant. I snapped a pic of my arm as best I could and emailed it to my dad to see what he thought. Although it was tough to tell he thought it might be petechiae. Finally my rheumy called me after I left about 4 messages in 3 days for her MA. I'm not sure if the MA gave my rheumy my messages until that 4th one as she never called back to just say, "Got your message and will be passing it along to Dr. S." Nothing. No return phone call at all. Blah. When I spoke with Dr. S I brought up the petechiae and she wanted me to be checked right away. Because it was Fri. late, late afternoon the lab at OHSU was closing and wouldn't re-open to outpatient folks until Mon. She set up an order for me to have some blood drawn first thing that Mon. but told me to try and find a lab that could do it this weekend. I did check around yet was unable to find one that could get the results back any sooner than she could on Mon. In addition to all of this Dr. S prescribed Vicoden and another anti-inflammatory to try out. I was instructed to wait on the anti-inflammatory until we got my platelet count back.

Saturday I had a hard time waking up. The nausea I had been battling for about 4 days or so was back and my left side hurt. At first I thought I might have a kidney infection and I did my best to ignore it given I am tired of having something new crop up...and feeling like a hypochondriac. I slept most of the day away as I had zero energy. Around 6:30 p.m. I stopped ignoring the pain and ran down to the Immediate Care for what I thought would be a quick piss in a cup and some antibiotics to go. Got checked in quickly, brought back to the room, given the cup to pee in, and did so dutifully. The doctor came in and went over my symptoms and health history. He told me that while I didn't have any bacteria in my urine, I did have a little bit of protein and bilirubin. Bad news bears on that last part. During the exam the pain on my left side seemed to be under my ribs. The doc asked if I had fallen or strained my side--which I hadn't. More talking. More thinking. I mentioned the petechiae, which he looked at, and immediately said that it was definitely petechiae. hmmmm... I ask if my spleen is on the left side...it is. This time he has me lay on my right side and he gently probes under my ribs on the left. "Your spleen is enlarged." Aha! Wait...that's not good, right? Blood is drawn and I am told to call back the following day for the results and to see my doctor on Mon. FOR SURE! I go home...not knowing what it all means, yet scared nonetheless. I read. I don't like what I read. So I play with the kids and Ryan. Anything to get my mind off of things. I sleep. That night my heart races, probably from the cappuccino I had at 8 p.m. Bad idea. I have a hard time falling back to sleep. My heart skips a beat here and there making me feel like everything is draining out of me all in a brief second...then it's back. Very much like my gallbladder attacks. I'm also fighting bile diarrhea again. Dumping syndrome. I hate that.

I sleep most of the day on Sun. too. I just can't get enough rest. In between I read some more. Still no good answers. I call the Immediate Care center...nothing. Wait. Call later. Nothing. About 24 hrs. later the results are in. My platelets are holding for the moment. Good news. My liver enzymes are back up, yet not sky high. Not good news, but could be worse. I sleep some more. The pain on my left side is still yelling at me, thankfully not shouting, or screaming, so I can handle it. Vicoden helps take the edge off enough so that I can bend, every so slowly, at the waist. I hate the extra grogginess it adds.

Mon. I call and ask to speak to Dr. S. The receptionist informs me that Dr. S isn't in the office on Mon. or Tues. but that Dr. S's MA can get her information at ANY time. I get put through to the MA's voicemail and leave a message detailing what has happened and how Dr. S wanted to know what was going on lab wise for me. Please call me, or have her call me. The day passes and nothing. Surprised? Not me. Annoyed? Hell yes. Nausea subsides a bit and I'm able to eat small meals. I do take advantage of this as it's been awhile since I've wanted to eat. The spleen pain seems a tad less today but maybe it's because I took half a Vicoden in the morning as my bones and joints were hurting pretty bad, and the other half in the early evening. I also feel less tired and am able to stave off my cat naps for the whole day.

Today I am back to being tired but I'm ignoring it well thus far. It's noon and no word from the MA or Dr S. I would call the gastro I saw before however I have no trust in that man. I would prefer to find a new one. How sad is that? With all that is going on and as serious as this is I can't stomach putting my faith and care into that man's hands. Sad. This time I'm quite scared...but not as scared as I am driving up this big ass hill we live at the bottom of. Ice and steep roads do not mix. :oO Priorities, priorities. ;o)

And the verdict is

As of now Dr. J thinks I have asthma. My lungs looked good on CT and there isn't any evidence of emphysema, but I did drop pretty quick during the methacholine challenge test. He has put me on Advair twice a day for the next three weeks at which time I will see him again. I took the first dose last night and a second this morning. Unfortunately Advair is a corticosteroid and we all know how much my body hates them. Today the lightning in my head and the shakiness came back from it's hiatus. But, I can take a deep breath again. And my peak flow meter hit 445--still below normal but up from my usual average of 400. I have yet to take the third dose tonight as the symptoms I am having are the "call your doctor" type. Tomorrow I will call Dr. J's office and find out if he wants me to keep taking it or what. Not sure what my other options will be as non-steroidal treatments aren't effective. :o(

Stupidly I put off asking for a percocet refill and now I am out. Of course today would be the day that my left SI joint has decided to scream at me. My skin in that area feels incredibly bruised too. Wearing jeans to the store tonight was so not fun. Honestly, the roxicet doesn't kick this pain. At least not the half of one I've taken. Maybe if I upped the dose it would which would be fine for the times that the pain gets this bad and then I can take it back down to the low dose I'm usually on. Or I'd be up for trying something completely new too. I've left two messages for my rheumy starting yesterday and no one has called me back. I need a family physician that can handle stuff like this. It's my fault for waiting this long, I know, it's just that I hate asking for pain meds. I really do. But damn I wish I would've called last week. The pain is bad this time. Real bad.

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.

All kinds of fun tomorrow

Starting at 10 a.m. (more like 9:40 a.m. for check-in) I will be spending most of my day at Willamette Falls Hospital. First up will be my Lung Function test--unless I hit the lab before that and have my blood drawn. Then it's off to Radiology for a CT scan of my chest, sans contrast. The entire process should take about 3 hours. The drive there is roughly 20 mins. but it's easy as it's straight down 205 and then a few turns after you reach Oregon City.

I started my 50,000 units of calcium last Thurs. Tomorrow I will take my second dose. So far I haven't noticed any drop in the bone pain, yet I'm remaining optimistic that after my second or third dose I will notice an improvement. I also began the B12 supplementation and am way less anxious than I used to be. This was a surprise side effect that I am thrilled about! I wish I would've known sooner about my B12 level being somewhat low so that I didn't have to suffer like I did. It wasn't anything major, however I was starting to hate going too far from home. I can't tell you how nice it is to feel "normal" and not stress over something as silly as running to the store. At least now I know those anxious feelings were not all in my head.

Fatigue-wise I hit the wall again a few days ago. Before it happened I had horrid nausea one night. So bad that I was convinced I would be sleeping in the bathroom again. The next day I woke up feeling as if I had a bad hangover, without the headache, and could barely function. Today I feel much better, although "much better" for me is still not good. :o/ Tonight Megan and I actually ran to the mall so we could each get a pair of Crocs. I had been coveting the Alice version but then I tried them on, and while I liked them (they are so cute!), I wasn't thrilled with how it fit around the sides of my foot. Nevertheless I asked the gal helping us to order me a pair as I figured I'd grow to love them. Megan, on the other hand, fell in love with the Alice in red. Then she spotted a fox Jibbitz (the little charm things you punch through the holes in the shoe). Naturally we had to get two RED foxes. :o) She was thrilled. While Megan had been trying on her shoes I saw the Celeste Croc and thought they were pretty stinkin' cute too. Tried on a pair and yeah...heaven. Of course they didn't have my size in the color I wanted, so the gal took my number and promised to call when they came in. Before we left I thought I'd check another store that carries Croc's and lo and behold, there at a tiptoe's reach was a size 7, Chocolate brown, Celeste. Sweet roll! I wore them around the house when we got home and though it was nice, my feet were already yelling at me from walking around the mall so it wasn't quite as wonderful as I thought/hope it will be. I am still on the search for the most comfortable shoes around. I've tried so many and none have fit the bill. Maybe, just maybe I've found THE ones.