Rheumy Appointment

Yesterday I had my appointment with Rheumy, and it totally messed up my original plans for the evening. The appointment was for 120pm and I didn’t get out of the clinic until 4pm, making my originally intended plans for having dinner ready at an acceptable hour, impossible.

Anyhow.

So Rheumy still feels that Rituxan is the best course for treatment for me at this point in time. But HawtDoc’s reservations are pretty much rendering the treatment’s benefits nul & void as of now. We’d basically be starting my body all over again from scratch. I have an appointment next week for 6WT + ABG so that we can FINALLY get the ball rolling on having oxygen coverage from the province (at least!). After that, we’re going to have our chat regarding doing the steroid Prednisone for a month before reconsidering Rituxan.

From Rheumy’s perspective, she is wholly NOT keen on the idea of doing a round of steroids mainly because of the long term side effects it could cause me as I am already on a baseline steroid and have been since birth. There is a possibility that the pain in my hips is being caused by long term steroid use, but because of my baseline condition, unrelated to SALLY, there’s no chance of ever NOT having steroids in my body.

Having said that, I asked her opinion of CellCept and she was totally a-okay with the idea of switching out my Imuran (current baseline immuno-suppressant) for it. Apparently CellCept has been shown to be more beneficial for the treatment of Scleroderma, Lupus Nephritis & Interstitial Lung Disease than the Imuran. Given that I’ve been on the Imuran since we finished with the chemo drug Cytoxa (way back when), she would rather we swapped out the CellCept instead of giving me more ‘Roids.

We already know that the ‘Roids are going to make me:

A) Run around like a chicken with its head cut off
B) Eat everything in sight
C) Gain at least 10 pounds from the combination of “EAT. ALL. THE. THINGS!!” + Water Retention the steroids are famous for
D) EXTREMELY RAGEY (very NOT good at this time, given current family situation)

In the end, once we taper the dosage back to zero, my breathing will be back to the same feelings of suffocation as they do without them now. So the question becomes: When will we make a final decision on how to treat my conditions from this step forward?

 

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 Appointment Update

Well that was slightly unexpected. Unexpected in a good way, mind you, but still unexpected.

We had a rather in-depth chat about a lot of stuff and I was really quite surprised that Rheumy finally gave me an option for treating the pain in both my hips that has been driving me absolutely bonkers for a few years now. It hadn’t been until I mentioned the increasing pain to HawtDoc at my last couple appointments  that it started becoming a potential red flag issue.(Plus getting X-rays done and him wanting Rheumy to get a requisition for an MRI of my hips also helped bring the issue to light) HawtDoc’s biggest concern is that there might be Avascular Necrosis happening. As far as the Xrays show, superficially, there’s no sign but the MRI would show far more detail, so I have a requisition being sent out for it.

As for what kind of treatment we’re doing for the hip pain in the meantime, Rheumy gave me a couple of Kenalog (corticosteroids) injections this afternoon, one in each side. We don’t know if it will actually be beneficial, but it couldn’t hurt to try it. Having said that though, she did say that if it does happen to make things a little better, she’s not entirely keen on doing regular injections, as she feels it could deteriorate the tendons around the joint.

As for what I should be doing at home, she wants me to do some static exercises while I’m lying in bed, or out and about walking. Or as she put it, “SQUEEZE!! SQUEEZE THOSE MUSCLES WHEREVER YOU ARE!!”  Crossing fingers it will help ease some of the increased pain… and I suppose I will potentially get a better shaped ass by making sure I intentionally do ass squeezes. LOL.

Interestingly, for a solution to my leg cramps, she’s concerned I may be lacking in magnesium, even though I’m already on supplements and given that I have breathing problems. She says my increased difficulties in breathing from the chest pain can make my blood more “alkaline”, and as a result, she feels that I could use an extra-extra boost of magnesium to help the cramping by consuming a bottle of mineral water that’s high in magnesium. Weird. It’s a little Woo-Woo and weird, but okay, do what the nice doctor lady orders!

As for what’s up with the Rituxan treatments, Rheumy would like for me to do at least one more round of infusions so we can determine if it’s actually been beneficial.

So far my lung function tests are showing “positive improvement” from the one round and my creatinine levels are showing improvement. But at the moment, it’s unrealistic to think that there’s been definitive improvement going on unless we do it again. As far as the “unusually shitty side effects” I had to deal with (chest pain, harder to breathe, increased hip pain, muscle spasms and pain in my knuckles) Rheumy thinks they were completely a coincidence; as opposed to the expected exhaustion, nausea, vomiting, anorexia, those are considered “normal”, which totally blows :P

So much work..! And thoughts about SALLY & the past two years.

Amigurumi.

It would seem that these are my “thing” as of late the last few years. I still can’t make them as itty bitty teeny tiny as they’ve been originally designed, but that’s wholly because of SALLY and the damage she’s caused to my hand mobility — I’m ever so thankful (and incredibly grateful) that I still have the ability to type on a keyboard. That summer when TheHubbs  & I still didn’t know what was wrong with me, I couldn’t even type because I had digital ulcers that I didn’t even know were digital ulcers at the time. I distinctly remember that doing anything that required even the lightest of fingertip touch was so incredibly painful.

After finishing up the Ewok Tree Mobile, I’ve been itching to start another mobile. Not an Ewok Tree, mind you, but something equally, if not more, geeky — Star Trek: The Next Generation, Doctor Who, or a collection of VW Bugs & Buses. I haven’t entirely decided as I am currently attempting to fast-track a set of Hello Kitty & Dear Daniel stuffies for Baby Bro’s GF. We’re celebrating everyone’s birthdays super early this year (a whole month!) because there’s going to be a lot of travelling going on to other cities, other countries & even other continents!

Baby Bro’s birthday present is already decided on, but his girlfriend’s birthday we’ve never actually celebrated in years past because they’ve not thought to celebrate it at my parents’ house. Since the both of them will be off exploring Vienna & Italy, thereby missing both birthdays to be celebrated at home, Mom & Dad wanted to do an early birthday party before Baby Bro left for his internship(?)

I love that amigurumis are so simple & cute looking as a finished product, but good god it takes so long to make the finicky little body parts, stitch them together, add facial expressions and accessories! What you would think to be is a short project, ends up becoming a full working day of crocheting per stuffy, if not more!

Right now I am most of the way through HK, but I still need to stitch on all her facial features and make a complete DD in time to give for tonight. Cross your fingers I will at the very least complete HK, DD will totally be a bonus.

New Topic: The elephant in the room or Why I haven’t really been blogging.

The last two years have been difficult to try to do much writing about. Not because I’ve been dealing with all the stuff SALLY decided to throw at me (in the scheme of things, very little, thankfully) but more so because I had been so frustrated at my old Endocrinologist’s actions, or lack thereof to be more correct.

Back in 2013 Rheumy III wanted to get the ball rolling to start new treatment: Rituximab. The issue was that she needed some information and professional recommendations on how to proceed with reducing my steroid use. As a bit of background information: I take a constant baseline dose of steroids for my original underlying condition Panhypopituitarism which keeps my body functional; and in terms of being able to deal with the stress of being sick, I need to triple the steroid dose or I would die because my body hasn’t the ability to cope.

After 9 months of attempting contact with my old Endocrinologist by Rheumy III, HawtDoc, FamDoc, KidneyGuy, and myself, I decided to call it quits. The ability for us to move forward with Rituximab treatment rested solely on the fact that we were getting absolutely no contact from my old Endocrinologist. Thankfully FamDoc is always on my team to help do what he can and we decided at that point that it was time to find me a new doctor who would actually be willing to be an active participant in my care.

Fast forward two years and we’ve got me an Endocrinologist that I wholeheartedly love as much as the rest of the team of doctors who care for me, is an absolute joy to converse with intellectually during small-talk and who has a completely open door policy regarding questions or concerns I may have — all I have to do is give a quick call to the office and leave a message with the girls at reception that I need to talk to him, or just drop him a direct email(!!) and he’ll call me back as soon as he’s got a spare few minutes in between his patients. Not only that but he is truly of the opinion that it doesn’t matter what he thinks or any other doctor things we should do regarding administering my steroids — I get ultimate say in the final decision.

If I felt that lowering my current dose was just not working for me and it was making my life considerably poorer (versus better), he doesn’t care that other doctors want it lowered even further, he is comfortable & wants me to be comfortable with determining what level is right for me and my current situations. He’s giving me the power and the permission to decide what’s best for me, no matter what any other doctor may think is correct based on whatever references they’re using. That statement is positively mind blowing to me. Having always been “The Patient” listening to “The Doctors”, you kind of just assume that they know what they’re talking about and what they’re prescribing for you. Until the episode with my old Endocrinologist, I’ve never been in the position where I’ve felt unsafe in the care of any of my doctors. They’re a fantastic team that keeps everything running smoothly and with my new EndoDoc, and the new-found support he’s been giving, I feel like all the pieces of the puzzles to my care have finally fallen perfectly into place . I am so thrilled with him, he gets the official nickname “Dr.Cuddles“.

As to the Rituxan treatment starting back in April, I’ve been thinking a lot about SALLY the last few days. The side effects I experienced from the infusions has made me seriously question what is going to happen next. It’s still too early to really determine whether or not the treatment has been beneficial and improved my QoL or improved any of my lung function, as HawtDoc is at the very least crossing his fingers for. I asked him what would be the next case scenario if the Rituxan treatment won’t be continued after my 4-6 month hiatus and he honestly didn’t have an answer for me. He flipped through my chart to see what Rheumy’s treatment options were that she was originally deciding on — IVIG, methotrexate, etc… But none of those treatments are really any “better” or “safer”, nor will they necessarily have better or worse side effects for me.

So, as usual, it’s basically a waiting game until I see Rheumy at the end of July.

In the meantime, I’m hoping to get back into blogging again as I think it’s about time I set my thoughts down again on paper regards to how we move forward with SALLY’s treaments.

New treatment coming in the New Year

So a few weeks back, I had seen Rheumy III and we were discussing the ‘magical miracle drug’. By now, all the doctors that needed to be informed about the treatment have likely been contacted and we’re slowly moving forward. The only doctor we’ve not yet heard from, unsurprisingly, is Cow Stamp Doc.

Earlier this week I had a follow up with Hawt Doc and we talked in a little more detail about what treatment(s) Rheumy III is toying with: IVIG or Rituximab. He doesn’t seem to have any preference one way or the other, but he did make very clear that whichever treatment she chooses, he is going to want to go back to seeing me on a very, very, regular basis again to keep a close eye on my lungs. He wanted me to be very clear that we have almost no wiggle room for me getting sick because I have both Interstitial Lung Disease & Pulmonary Arterial Hypertension working in tandem to make life more complicated when it comes to infections.

Seeing as we’re basically on the latter half of October, Hawt Doc doesn’t seem to think that we’d be starting treatments until the New Year, when my next appointment with Rheumy III occurs. It ~could~ start before then, but he doesn’t see any real rush to begin, especially since I’m still dealing with this cold-not-really-a-cold-or-virus thingy that I’ve been trying to fight off since my visit with him last month. It’s been an on-again-off-again fight where I’m trying to get over something, but it never really manifests into anything (thank goodness!). With all the fighting off of infections, it means I am just so dead tired all the time and it’s a frustrating vicious circle of ‘fight off potentially non-existent infection, feel a bit better, be thoroughly exhausted from trying to fight off whatever’s being a pain the ass’ then wash, rinse, repeat. So until that point where I STOP feeling like I’m coming down with something, he doesn’t want to put my body under any more stress than it needs to be.

As an aside, we did discuss how the whole treatment would be happening and it turns out both IVIG & Rituximab involve hospital outpatient IV infusion dosing.

Blurrgh.. Hospitals.. Blurghh… IVs… Blurgghh.. Blurrggh… Blurrghh…

Knowing that, I dunno if I actually signed up for this ride -_-;;;

No, that’s not true.

I did sign up for this and am, to some degree, kind of looking forward to the notion of making my Quality of Life better (I do hate those words), not to mention potentially reducing my pain issues, reducing the need for steroids and getting rid of the Moon Face, etc etc etc…

So yeah. For now, that’s all the information I have until:

A) I see Hawt Doc again

B) I see Rheumy III again

C) I see Cow Stamp Doc for the first time in YEARS.

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.

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 ^_^

Lots of thinky thoughts… thought-jam time.

I got a call from Hawt Doc’s office this morning, I have an appointment booked for January 6, 2012… at 715am.

*sigh*

Really? Why does the PLC insist on booking me so many gawd-awful early morning appointments? I have to check in at 715 and then get another chest X-Ray done and my actual appointment will be at 8am. It looks like the ball has been set in motion for whatever Hawt Doc has decided to move forward with. I assume that he’s finally managed to get a hold of Rheumy II as well as the Liver Guy and they’ve had their telephone pow-wow.

Rewinding a few days to last Thursday, I was in with Fam Doc and we discussed the letter he received from Hawt Doc — he was trying to decide whether to put me on chemo again (or something of that same treatment category) or Cellcept and it all depended on what Rheumy II and Liver Guy had to say about the whole situation.

After stewing on the situation for a few hours, I came across some information on various treatment options for Scleroderma and I discovered that common side effects of the Cellcept just suck. As a starting point, check this out:Tremor, headache, hypertension, chest pain, GI hemorrhage, nausea, vomiting, anemia, fever, infection, sepsis, leg edema. Not exactly fun times, lemme tell you.

Not that the side effects of the Imuran and the Cytoxan didn’t suck, but the whole thing in general just makes me bummed right out. Just for frame of reference, these are some of the side effects of the Imuran, which I am currently taking: nausea, pancreatitis, increased infection, increased cancer risk, anemia. And to finish it off, the Cytoxan (chemo) that I took way in the beginning: bone marrow damage, hair loss, nausea, diarrhea, bladder inflammation, increased cancer risk, increased infection.

I am under the assumption that Hawt Doc wants to start with treatment as soon as possible and seeing as he’s not in the clinic for most of January (according to his secretary) he squeezed me into the clinic as best he possibly could.

So that’s that for SALLY… for now

For those of you who have not yet heard…

I’m getting an Oxygen tank sometime in the very near future.

I had an appointment with Hawt Doc this morning and even though my tests show that there is no significant change anywhere to be seen, I’m really not doing so great.

My breathing over the last two months has been a bit of struggle when I’m out and about doing stuff — or even not out and about, just doing stuff like loading & unloading dishwasher, getting in & out of bed to pee at night or because I’ve forgotten (several) something(s). I can’t yawn. Do you know what it’s like to be incapable of yawning because your lungs don’t expand? It’s not fun.

So I’ve apparently come to the end of what I can handle, physically & mentally, in the lack of breathing department. I asked Hawt Doc how sick do I have to be before we can explore the option of having an oxygen tank. Turns out, after he’d discussed things with the resident that had just seen me, he’s pretty much on the same page. In his mind, with all the crap that’s already wrong with me (ILD & PAH) I’ll have to have oxygen eventually. If not right now, then maybe in another 6 months or a year’s time. Nobody knows. But it will be an eventuality that we will be facing.

So to start things off, we did a blood gas just to see how my levels are. I’m currently sitting at 71. In order for the Alberta Government to automatically cover the cost of me getting home oxygen, my levels would have to be somewhere under 55. If on exertion or during sleep, my levels fall low enough, there’s a good chance they might cover it in that instance as well.

In the meantime, because we’re just “test-driving” the use of an oxygen tank to see if it even helps my abilities to breathe, we’re looking at forking out $300/month out of pocket. And it won’t be an immediate notice of improvement, like everything, it will take a few months of playing around.

On the one hand: I got what I wanted & needed and Hawt Doc is totally a-okay with going with this treatment route, but on the other…. how are we going to come up with the $300/month to pay for this? :(

Next Tuesday is home visit from the Oxygen Peeps to come talk to us.

*sad face*

One side thought about the Lung Clinic: They’re still giving me juice boxes when I visit… and today I got 1/2 a chicken sammich! The mind boggles.

………

So the Derm’s all excited… if you can call it excited, he’s kind of an interesting character, as they say.

Because SALLY was diagnosed at the early stages, there is a treatment that I will be undergoing (soon-ish, whenever the specialist from the hospital calls) that has very good results which was recently documented in May’s American Journal of Clinical Dermatology.

Whee…

From what I gathered, the gyst of it is I would be hooked up to a dialysis-like machine, have my blood extracted, white blood cells separated, UV light beamed at it, I take some drug to help the absorption of said light and then the blood is reintroduced into my system. The whole process kinda reminds me of the white blood cell scan they did last January where they reintroduced the white cells with a radioactive tag….

Anyhow, according to the derm, it’s had great results in the double blind placebo testing specifically for Progressive Systemic Sclerosis in above-mentioned journal. It would help with the stiffness in the joints, pain in the muscles and the grossness of my skin (which is, according to him, the least of my problems). To some degree it makes sense to me because when I spent oodles of time in the sun last year, I did notice a significant improvement in things.

I guess this is very good news… I’m just all weirded out by the fact that I’ll be spending more time in the hospital again with poking and prodding action like MIL and her weekly chemo treatments.