So HawtDoc and I had a chat…

CT Scan from last week showed that there’s been no real change in the amount of permanent lung damage, but there are signs of inflammation going on.

Next week he’s going to be filling in all the paperwork to get oxygen coverage from (at the very least) Alberta Government, plus: he’s wants to book me in for a whole shwack of new baseline tests to be done before Christmas; mainly for the oxygen coverage to be accepted, but also because he was toying with the idea of putting me on 2 weeks of Prednisone to see if my breathing improves. If not, then we move forward to the Rituxan, but he’s still feeling hesitant & unsure as to whether Rituxan Treatment is a good idea for me.
As a side note: if we don’t opt for the Prednisone route, we could try changing my Imuran to Cellcept but he has noticed that 30% of his patients have unpleasant GI side effects (yippee diarrhea :P ) and tummy upset.
*sigh* Nothing is easy with SALLY, is it?

Slightly confusing change of plans…

Sooo… I’ve had a few days to think about the most recent thoughts from HawtDoc.

At the beginning of last week I called HawtDoc’s office and left a message regarding getting an update as to what the plan was for beginning the second round of Rituximab. I got a call at the end of last week from HawtDoc’s receptionist telling me that she is in the process of trying to get me in for another Chest CT Scan and then he’d like to see me afterwards to talk. At the moment, he is not planning to do another round.

This kind of leaves me in a bit of confusion, limbo and some fair bit of concern as to what’s going on — I know that he’s personally overseeing the infusion treatments, but I didn’t know that he was going to officially be calling the shots as to whether or not we proceed with treatments. It took us three whole years to get us to this point in time where we could actually move forward with doing infusion treatments and now we’re stalled.

I’m not angry by any means. I’m not even really frustrated by the whole thing — what I am is a tad bit concerned that perhaps all the tests we did recently (Echocardiogram, Abdominal Ultrasound, Chest Xrays, etc) may have popped up something that he’s not telling me about; but it’s not so serious that it’s requiring me to come in ASAP to discuss options, so he’s waiting on a CT Scan to confirm his suspicions. Since my biggest concerning side effect from the first round of Rituximab was chest pain and difficulties breathing, it’s not like the PFTs I did are definitive in showing improvement when the numbers are going from 52% to 54% functionality. The change in numbers was pretty negligable, if anything, so I am guessing they mean practically very little to HawtDoc in the scheme of things.

So… I’m stuck.

I’m waiting.

I’m worried, but I’m not.

The thing I hate most is uncertainty and no clear directional path of what comes next.

Rheumy III appointment update

Rheumy III just prescribed for me to go shoe shopping for new shoes, 2 pairs in fact(indoor & outdoor), AND wants me to wear my sexay boots more often! Admittedly the prescription was for Birkenstocks or something similar, which is questionably attractive & fashionable depending on your tastes, but still…! Shoe shopping prescription! With the potential for Insurance to cover them! I am no longer allowed to wear flat, fugly, orthopaedic shoes with orthotics anymore! Apparently I have arthritis in my feet (news to me!) so Rheumy wants me to be wearing something with a slight heel on it because it will stop my ankles from rolling inwards so much.

She is not pleased that I am so moon-faced and is rather displeased that Cow-stamp Doc hasn’t looked into fixing the issue, as she thinks I am on way too high a dose of steroids for what my combined conditions requires.

Not only that, but apparently there is a new(?) “magic-miracle drug” which may be highly beneficial for pretty much ALL my current inflammatory conditions that she would like for us to give a whirl, as long as it has the approval of Hawt Doc, Kidney Guy and one other set of docs, which I need to have a consult with. I think she might even be considering the idea of bumping up my Imuran doseage, but I’m a little fuzzy as to why at the moment.

She also wants me to have a consult with a new doctor, but I’m blanking on which department they are and what they do. I think it’s for muscles because she’s concerned about my muscle enzymes being so high and they would need to assess whether or not the “magic meds” would help in my case.

There’s also bone density testing in my future which again, I’m fuzzy on the reasoning, but since she wants as much information on me as she can get her hands on, I’m a-okay with it, as much of a nuissance as testing can be :P

This has only been my second appointment with her and already she is of the opinion that if there’s nothing acute happening, it’s not kosher to just sit back & keep with the status quo in regards to SALLY. She has a genuine interest in trying to improve my quality of life as best she can with all the resources available to her and that blows me away.

Muscle Biopsy Update

I saw FamDoc on Monday for my monthly visit and we had a long chat about stuff.

Turns out I had a busy month of August with appointments left, right and centre all around me.

We went over the pathology report, but since FamDoc’s area of expertise is NOT neurology, we could both only really take a stab at what the report meant. He’s going to send a copy of the report off to the Neuro Doc I saw back at the beginning of the year for the muscle testing to see if he could shed some light on what the report really means.

The two biggest things are:
1) No signs of inflammation in the muscle tissue (woo!)
2) There are noticeable signs of atrophy as well as necrosis going on at the cellular level of the muscle tissue. (not so woo)

The biggest issue of concern is obviously point #2 and what that really means for us — Fam Doc is hazarding a guess that if there’s necrosis going on, then that could possibly be an answer as to why I have the muscle pain that I do. He said not to take his guess as gospel by any means, because again, his area of expertise is not neurology and it could very well be something that NeuroDoc sees all the time in cases like mine and in the end means absolutely nothing.

But like I mentioned a few weeks ago: having some information of any kind is nice. So on the one hand, we have at least the positive sign of there being no inflammation, but on the other we have this rather questionable issue of necrosis.

That’s kind of freaky if you think about it… does this mean I can legitimately say that I’ve got a lil’ bit-o-Zombie action going on inside me??

Draaaaaaaaama llama

Okay, not really.

I’ve been sofa-bound for the past week. Without getting into too many foul details, let’s just say I may have possibly had some kind of food poisoning which rendered my body into a state of shock & awe. Not in a good way and to the point that I ended up in the Emergency at the hospital because I was peeing blood the colour of red Gatorade.

Thursday prior to that, I was in for my now annual visit to see Kidney Guy and at that time there was a hint of blood in my urine at the time but neither of us were particularly concerned — it was only when I was making it look like I had poured a whole bottle of red Gatorade down the toilet that we became pretty concerned. The Doctor in the ER was concerned that I had two separate issues going on: food poisoning (obviously) and a possible Lupus-Kidney flareup. But since the ER is not well equipped, not prepared to deal with that kind of issue, they wanted me to follow up on Monday with both Rheumy & Kidney Guy. Well, Kidney Guy didn’t know what to make of it, Rheumy II didn’t really much care (for a lack of a better term). We did followup testing and the peeing blood thing stopped as of Monday/Tuesday. I haven’t seen either of my doctors because it would appear that none of the tests they did showed any issues — Kidney Guy was thinking that perhaps it wasn’t my kidneys that were acting up, but my bladder.

Either way, I’m better. Not great, but better.

The sustenance I’ve had for the last week has been rather sad & depressing, but most definitely needed: Honey water, Gatorade, strawberry probiotic yoghurt, Coconut Water, Salted Crackers, Chinese rice porridge, Homemade Quickie Pops (made in my new toy, the Zoku) and whatever seems to agree with my tummy. In some cases, that’s been: homemade fried pork cutlet sammiches with my homemade picante sauce & Charlesford, meatloaf dinner from MIL and Peach & Pear-Orange Jello from Mom (with whipped cream!)

It’s been a rough, rough, incredibly rough week. My insides are still not 100% A-Okay but I am crossing my fingers that I will be able to make it to Father’s Day Brunch tomorrow. We’re doing the usual homemade eggs benny at Mom & Dad’s tomorrow and I am cooking. I have a few recipes, believe it or not, that I need to post that I’ve made over the last few days, but I shall make them each a separate post as to not clutter up the health update that I wanted to put down somewhere for my own records. I do need to write it down in my daytimer, too, but I thought that I should let everyone know who left me get well wishes last weekend that I am still alive and my insides are slowly on the mend.

XOXO

So simple, yet so incredibly tasty..

I have this ~thing~ for tzatziki. I don’t know why, but from the very first time I tasted it and I can’t even put a finger on when that could have been, I have been absolutely blown away by it.

It’s such a simple sauce and yet, up until now, I’ve never thought to try making it. I suppose the main reason being is that I rarely have plain yoghurt or cucumbers on hand in the fridge at the exact same time.

Now because I have to do a sleep study test tonight, which was ordered by Dr.Cute, I need myself a snack before I go to bed. The test requires a minimum of 5 hours of data and of course, the more the better. My sleep’s been totally messed up and of course I haven’t been able to get to bed before 2am most nights or fall asleep before 5am once my head’s hit the pillow. The only difference between this test and the last one is Dr.Cute wants me to be wearing my oxygen during this one. This is a slight problem. I have really small nostrils and I don’t know that I can jam 2 canulas up my nose o_O;;

So for tonight’s snack, I am having: falafel balls wrapped in super thinly sliced deli meat (chicken) and dolloped with my very first tzatziki attempt. The balls came from Costco — Mom & Dad went shopping on the weekend and picked up some junkie food (read: Dad was hungry and basically picked up anything & everything that looked tasty to him at the time) and what came out of that trip was 2 boxes of falafel balls.

Interestingly enough, I’ve never had falafel before. I’ve liked the IDEA of falafel when I’ve read about them, but I’ve never gone out of my way to try them. I think the main reason is because there are very few Middle Eastern places close to our house for me to order them. When I tried my first bite this afternoon, I wasn’t terribly excited by them — very dry (cold, straight from the fridge), and the spices & seasonings I found to be kind of overwhelming for my palate. Dad said they taste pretty good crumbled up into an omelette(!?) and I think he also mentioned a bowl of soup, but I don’t recall exactly.

Fast forward a few hours, it’s snacktime before I strap my whole self up to a portable hard drive for the rest of the night and I have discovered that they taste pretty damn good. The spices are still a little pretty assertive and seeing as I’ve never had one before, I don’t have any way of knowing if this is typical or not. It’s pretty intense and I would honestly say a bit overwhelming for me. Eating them hot is definitely the way to go and if you eat it with the tzatziki: WOW. I just wish I had some ripe tomatoes on hand to go with it, a few thin slices of onion perhaps & a pita or homemade flour tortilla/naan, then we’d be rockin’ ^_^

Because I am impatient (and tired and on a pseudo deadline), I didn’t bother draining my yoghurt or salting + draining my cucumber. I totally did it on the fly, using this recipe as my guideline.

It’s pretty fast and pretty darn tasty for just throwing a few spoonfuls of this and that willy nilly into a bowl and stirring with a spoon. If anything, The Hubbs is probably unknowingly glad that I am sleeping in the spare room tonight since fresh garlic is pretty potent on the breath, as I forgot & suddenly realized.

No real measurements for tonight’s dip since I just made enough for me, check out the recipe link above for more exact quantities.

Midnight Tzatziki

plain Greek yoghurt
1/3 cucumber, peeled & seeds removed
1 clove garlic, mashed to a pulp
dill powder
lemon juice
salt
pepper

Mash garlic with a pinch of salt in a mortar & pestle until you get a smooth paste.
Put a heaped tablespoon of plain Greek yoghurt into a small bowl and add garlic.
Grate cucumber into the bowl & stir well (if you want, I suppose you could do it in a separate bowl and squeeze out the juices)
Add a splash of lemon juice, season with a generous amount of dill powder, salt & pepper to taste.
Stir well and eat straight from the bowl with your spoon, if desired.

CowStamp Doc Visit

Today was the first time I’ve seen CowStamp Doc in years.

Just as a quick refresher: Before we left on our trip to Alaska (more on that in a separate post), I started spotting/having a light period. Nothing crazy heavy, but it was still annoying and rather disconcerting. It’s been probably something like 7+ years since I’ve had to deal with that sort of thing and I had noticed that the spotting started a few months ago.

As far as CowStamp Doc is concerned, having a period is perfectly normal. ¬_¬ Except, in my opinion, having a period is totally not normal for me!

As he describes it, by taking the estrogen and progesterone separately, they basically balance things out so that I don’t have a period, but every now and then it’s possible that one will overthrow the other in their daily battles for dominance which will cause me to spot or have a period, which is why this is totally a-okay normal. As far as dosing goes: normally the Provera & Prometrium (I will be going back to the Premarin as soon as I finish off the pills I have left, thank goodness) would balance each other out perfectly fine, but he figures that because of the awesome new friend that my left ovary has, the tumour, it’s probably adding a little bit of extra hormones to the party which is why things are slightly unbalanced and causing the spotting.

As far as the tumour is concerned, just like Fam Doc, he’s totally not concerned by it. I find it kind of strange how Liver Guy is the only person who’s freaked out by it and is the one who made the moves to put in the requisition for the Gynae appointment.

So that’s that. Cowstamp Doc has no need/desire to see me unless something is wrong and is quite content to just refill my prescriptions annually by phone/fax with the pharmacy. Works for me, too, to be honest.

Liver is A-OKay! Sorta…

Saw Liver Guy this morning to go over the results of the liver biopsy.

Turns out my liver has a little bit of inflammation, but an incredibly high fatty disposition: like 2/3 of the cells are filled with fat. Awesome.

YAY FATTY CELLS :P~

Nothing can be done about it other than diet & exercise, and even then, because of SALLY, the lupus and all the other things I’ve got going on for me, that is a rather difficult proposition, according to him. Which is kind of nice — he actually recognizes that exercise isn’t an easy request given my health conditions.

So he doesn’t see any need to see me again. As an aside, he has a colleague who’s doing a study on patients with livers which have a high fatty disposition & relatively little inflammation. She’s wanting to see if probiotics will help with lowering the fattiness in the liver…? I dunno. Whatever, he’s going to forward my file onto her to see if it would be of any benefit to her study. If it is, great, if not, whatever. Studies are rather interesting.

Interestingly enough, my liver isn’t actually even the thing that’s concerning Liver Guy.

It’s my left ovary.

They discovered that there’s a 10cm mass hanging out on my left ovary.

“HUH???”, you say.

Ya. 10cm mass on any organ is not normal and so he’s sending off a referral for me to see a gynaecologist as soon as possible. He figures that it will more than likely need to be removed.

Since he already has the results of the biopsy which shows the mass, he’s hoping that I can get referred to seeing someone sooner rather than later, but we’ll see. I dunno what to think or say. I’m kind of indifferent about it at the moment to be honest.

Vague update…

So I saw Fam Doc on Monday as planned and I also got a return phonecall from Cow-Stamp Doc to book an appointment.

Appointment is booked for after we get back from our trip… which is great, that means it’s only 3 weeks away! But… that means it’s three weeks away, which therefor means that I will be suffering with this whole messy episode for another three weeks -_-;;; GUH.

ANyhow. My appointment with Fam Doc went swimmingly, for a lack of a better term. We had a little bit of a chat and decided on top of doing some bloodwork, he wanted to have me do a Pelvic Ultrasound.

The bloodwork is because I made mention that a few months ago, I had noticed that my boobs just felt weird and I seem to have the most bizarre looking crustiness going on around my nipples. Seeing as the normal reason Domperidone is prescribed is for women dealing with lactation issues, GI Guy did warn me a few years back not to worry if I randomly started some milk production.. o_O;

So we managed to get all of those appointments booked in a decent amount of time to see that nothing freakish was going on with my insides like the presence of polyps or whatever and he kind of left it at that. Except he asked me for permission to order a vaginal ultrasound.

WTF -_-;;;

The ultrasound was booked as ‘urgent’ and I managed to get an appointment for Tuesday afternoon. I have to say, and this is going to be entirely a moment of TMI: in terms of ultrasounds, this one was rather… well, I’m actually kind of embarassed to say that during the exam, I couldn’t decide if I was grossed out or turned on while I was having it done. It was rather fascinating and disturbing all at once.

Fam Doc should have the ultrasound results by end of the week at the latest (meaning, he should already have them) and since I did the bloodwork today, he should have those results by Monday. When I see him on Tuesday for follow-up and to do any last-chance stuff before our trip, this will be the day to figure out what’s going on.

I’m really not sure as to how I should be feeling about this whole week’s testings. I’m not even sure if when the techs were doing my ultrasound if they found anything weird or not since they asked me if they could press on a few parts of my tummy to get better pictures.

Guess there’s not much point worrying about it — I’ll just have to make sure to pack my lunapads and liners for this trip. I lamented a few months ago that I missed buying & wearing pads, but I honestly didn’t want for my body to grant me the opportunity ~NOW~ of all times.

*sigh*

 

HAPPY DAY!!!

NO CELLCEPT!!! :D

So. The followup in regards to my appointment that I had this afternoon with Rheumy & Dr.F — who is now going to be nicknamed Dr.Cute, cuz she is rather sweet & cute looking, has resulted in no cellcept.

I am actually really, really, really thrilled by this news.

Back when we were discussing the possibility of the Cellcept during the fall(?) of last year, I was wanting to get on with it as soon as possible so as to get on with moving forward. But as time ticked on by and it took forever for things to be approved, I actually sat down and thought long & hard about the side effects of the Cellcept and started feeling less and less enthusiastic about taking it.

Now that I’ve had my appointment today, I am feeling immensely relieved and rather ecstatic. Dr.Cute wanted to get up to speed with the abridged version of SALLY and after talking to her about what’s going on, how I’m feeling, doing multiple tests this afternoon at her request, it would appear that we still can’t figure out what’s going on, as usual. At least from her pespective it’s definitely not the interstitial lung disease or an increase of scarring that’s causing me all the tiredness and shortness of breath. With those particular thoughts in mind, she doesn’t think that we should put me onto the Cellcept when it’s not going to be of any benefit to me and the side effects will just make me miserable.

With all that out of the way, she wants to know for sure what’s causing my exhaustion and shortness of breath. She definitely wants to do more testing: I have an Echo booked in 2 weeks time. Depending on the Echo results and how Dr.Cute feels about it, she may or may not pass me back to Hawt Doc’s Pulmonary Hypertension cohorts, which is his specialty. Depending on the PH team’s decision, they may opt to do another Right Heart Catheterization to see if the PH is worsening and that may be the answer to my problems.

On the other hand, there is also another possibility: she doesn’t think I am using my oxygen enough. What? Really?? Ya. Rly. I generally use my oxygen only when I’m out and about. I rarely use it at home except for at night, but after walking around the clinic this afternoon with an O2 sat monitor taped to my forehead, we’ve discovered that my levels dip down to 82% without wearing my oxygen. With that discovery in hand, Dr.Cute wants me to change the way in which I use the oxygen: She wants me to wear it 24 hours a day. Obviously if I’m just hanging out sitting in front of Ponyo, I don’t need to wear it. But if I get up to pee, or grab a drink from the fridge, or make myself a snack, or feed the cats, she wants me to wear it. It doesn’t matter that it’s only two steps away from where I am sitting, my oxygen levels drop considerably with those small bursts of activity and that little bit can contribute to my tiredness and exhaustion.

Seeing as I’ve gained about 20lbs since starting the Imuran, there’s a possibility that I’ve developed sleep apnea. Since I am wearing my oxygen primarily at night, and I usually feel better with it on after I get up to go to the bathroom all the time, that is easily remedied and drug-free. The only thing we’d have to do, is yes, more testing — basically another sleep study.

Since Mom & Dad were with me this afternoon, Dad asked if there was any chance that with the new test results, if the government might now cover my oxygen. Dr.Cute was surprised that no one had considered booking me in for the testing that would be required to determine my eligeabilty for government-paid oxygen. I’ve said this time and again, unfortunately I’m not suffocating enough to covered and she said that as of this past week, the government body that oversees the oxygen thing finally announced changes which would make getting oxygen easier for patients that need it. SO, that means that I might finally be getting my oxygen covered! Hurray!

So that’s what’s going on… no cellcept, lots of oxygen, even more testing and maybe get to have my oxygen more affordably ^_^