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 tired….

I keep wanting to write a surgery post, but I’m just so damn tired!

I can’t shake it and it frustrates me beyond belief.

Healing is a very, very slow process for me and paired with the exhaustion, the pain of both surgery & my normal stuff, it just makes everything more annoying. Even simple things like eating & drinking are really hard to do keep up with.

I’ll update… eventually.

In the meantime, I think it’s back to bed for me.


I’m home!

Well, I am back home again and happily snuggled on the sofa amongst a wonderful pillow & blanket cocoon that The Hubbs made for me yesterday before my return home.

Surgery went very well, no complications occurred and I am finally back at home on the mend.

I’ll post a more detailed update tomorrow when I’ve hopefully had a better night’s sleep in my own bed.

Thank you, everyone, that wished me good luck and sent all around well wishes for the week I was in the hospital.


Surgery & Drama Llamas Part III

So I got a call a couple days ago from Gynae Doc’s office.

Turns out they want me admitted a day early, on Thursday Oct.25th, because Anaesthesia wants to have a PICC Line put in :/

Yes, I know this is good thing — it means they are taking advantge of every precaution they have at their disposal to keep from having to worry about other potential complications stemming from this surgery…. But damnit, I don’t wanna stay in the hospital overnight the evening before my surgery.


By myself.

Without The Hubbs.

It’s bad enough that this is a stressful experience on its own, but this just makes my night before surgery anxieties that much worse not being able to be at home with The Hubbs & The kitties :(

Sally & Surgery Drama Llamas Part II

I am so overwhelmed at the severity of the riskiness of this whole procedure.

The Anaesthesia Doctor that consulted with us, turns out, had Hawt Doc as the person she was trained with(?) or worked under(?) whiile she was doing her residency. She was super awesome by the way. During the consult, along with all the other stuff we had to discuss, she wanted us to mentally prepare ourselves for the likelihood of complications arising at any time — all of my health conditions mixed with any surgery involving anaesthesia will always be complicated and VERY high risk. Not to make the whole procedure sound gloom & doom, something she wanted us to know & be aware of is that I’m one of those patients where all sorts of things could happen or nothing at all could happen. We always hope nothing will happen, but we can’t be naïeve and stick our heads in the sand thinking that everything will be peachy keen from the get go. For a “normal” person, there will always be risk, but for me, the complications are all over the place and as ridiculous as this sounds: even the complications are complicated.

Just to prepare for the surgery, some of the stuff we had to discuss was the whole gamut of where to have IV lines put in (I have one cooperative IV vein and it’s NOT in my hands) and whether or not to have a central line installed (she is thinking no, thank goodness, but I suppose even that could change). They will probably have a tube inserted into the artery in my wrist so they can regularly take samples to measure blood gases. Unfortunately, because I have Reynaud’s, that procedure tends to be an automatic “no, we can’t do that because it can cause [permanent] damage”, but they will most likely be doing it anyways because she thinks the benefits of safety totally outweighs the risk — I should probably make sure they do it in my non-mouse side so there is still the potential for gaming :P Interestingly, that “procedure” alone requires local anesthetic and she wanted me to know that they have lots of really good drugs on hand to make things easier. Because of the PAH, another tube will be inserted in the crook of my elbow to remotely measure the condition of my heart and the stress that the procedure is causing, so it too needs to be closely monitored at all times.

As to the actual surgery, things are still being decided as to what the best course of action would be. Interestingly, doing the surgery laprascopically isn’t actually the safest or best option for me. The gas that they use to inflate the abdomen is really bad for people with PAH — it constricts all the blood vessels in the body. With PAH, your vessels are already constricted, so essentially, it sounds like the CO2 would completely shut them down. That is definitely not good times.

The thought that Anaesthesia is currently juggling in her head is if it would actually be better and safer all around to do a laparotomy. The options for anaesthesia become a little more varied and potentially favourable — one option she’s considering is a spinal block, which is basically freezing me from the waist down. The logic of this is it would leave my heart and lungs potentially less stressed and “untouched” because I wouldn’t have come out of general anaesthesia which shuts down your whole body, and no gas would be involved because they would just be making a simple incision to remove the ovary. To be honest, of all the needles and procedures I’ve ever had, the thought of someone sticking a needle into my spine freaks me out and terrifies me. She wanted me to know that in her opinion, it’s actually not as bad as I think it is… Plus there are drugs and local anaesthetic ;)

One of the issues that I didn’t realize would be an issue is the need for a breathing tube. If they do a spinal, we might be able to avoid one (at least that is my understanding) but if they have to use general anaesthetic, they will probably want to put it in while I’m still awake(!!!) — there will be some really nice drugs involved with that too, as she was quick to point out and again happy to inform me. It turns out that beause of the damage Sally caused, I can’t open my mouth as wide as they’d like to put in the tube and the biggest problem will actually be taking it out. If they end up putting in a breathing tube, then ICU is definitely going to be involved and she would like for them to take their time removing it — preferably over the period of a few DAYS.

There’s a good chance I will be in the hospitsl for way longer than just “a couple of days”, which would be the case should everything go with no complications whatsoever. I hate the hospital. I already hate the constipation that I know is going to happen from all the drugs they pump through my system…

I think I need to go and do some serious stress baking for the next two weeks :/

T-Minus 2 weeks and counting…

Sally & Surgery llamas….

I’m potentially going to have an emotional meltdown thinking about all the stuff we spoke to anesthesia & internal medicine about this afternoon in regards to my surgery at the end of the month.

Short story: Because of Sally and Company, I will be admitted to the hospital for a minimum 2 days, post-surgery. With all my health problems, the issue is now ICU has to be brought into the picture because there is a higher likelihood that I will be there for a week or more due to complications. In the opinion of all the doctors involved, this surgery will go ahead, they just have to decide HOW to do it. NOT doing it is no longer a viable option because my health will deteriorate the longer we wait, making this procedure even more dangerous & higher risk should I not be as stabe as I already am.

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??

Much belated updates

I just realized that I haven’t made any proper health updates in months and for those of my friends & family that actually read my blog looking to check in on the state of my health, the posts I’ve made recently about CSA veggies, recipe experiments and art projects, probably haven’t been all that useful to you.

So, here we go.

1) The biggest issue I have that’s been of concern is my inability to feel like I can breathe properly. I think that’s been the hardest thing I’ve been dealing with.

I did have a few phone calls back and forth with Dr.Cute, prior to our trip to Alaska in May, whilst Hawt Doc was on mat. paternity leave. At that time, there was nothing that she could do for me as her expertise is not in PAH, which is totally Hawt Doc‘s realm. Having said that, if I ever had to change lung doctors, I would certainly be very comfortable to see Dr.Cute in the future and she also made mention that if I should ever need to see someone sooner than when I could get in to see Hawt Doc, she would be glad to take me on as a patient.

So where does that currently leave me?

Well, I have an appointment with Hawt Doc on the 27th and I guess we shall be doing more of the usual tests to see what’s been going on over the last few months. I am really not happy about the difficulties breathing. On the one hand, I am hoping that they can tell me, “Look! There’s been a change in your test results & we’ve been able to identify it!” but on the other, as always, I really don’t want to have more things be wrong with me.

It’s really hard to always have the thoughts in my head of: “I hope they find something.” paired with, “Please, don’t find anything.” but also having, “Shit, what if they find something is wrong… then what do we do?” It’s so twisted when you think about it because really, who would ever want something to be wrong with them…?

I desperately want them (anyone!) to say to me, “Okay look, this ~thing~ is going to probably suck terribly, but it’s also going to make you feel SO much better when we’re done, so try and be brave for the next little while…” I don’t even care what that ~thing~ is, I just want to feel like a normal human being again.

2) Rheumy II, I keep re-discovering, is really not particularly concerned about ANYTHING that is not related to either the lupus or SALLY. Like not at all.

For example: with my hands, my knuckles seem to be becoming more rheumatic(?) looking. I have places that are rubbing badly when I use a chef’s knife and her comment was, “Oh you’re just starting to show your age.”

So admittedly, while this is not exactly a life & death issue, and in her opinion just cosmetic (like most of my concerns seem to be, in her view), it doesn’t warrant any second thoughts. I find that my knuckles are feeling more uncomfortable, achy and I am becoming more clumsy as I try to do everyday tasks like hold chopsticks without dropping the item I am trying to pick up, holding chopsticks at all is becoming tiring and using that chef’s knife could actually be a dangerous activity if it slips from my grasp… but these are things which do not concern her.

So on a different note — she is being moved to the south hospital next year(?) and there’s another rheumy doctor, slightly younger, who will be residing at the old children’s hospital, taking some of Rheumy II‘s patients if they dont want to make the drive to the deep SE. She has a SALLY & pah specialty, and since Rheumy II‘s gonna be retiring in 3 years anyhow, she gave me the choice of whether or not I would like to switch to the new lady. She’s apparently very nice & I would like her lots, according to Rheumy II. Come October, when the new rheumy arrives, I will have a meet & greet with the both of them, then decide who’s hands I will place my care in. If I say yes, which is my current tentative leanings, I will be transferred and perhaps things might be better…? Perhaps the possibility of having a rheumatologist who will actually listen to my concerns & not just brush them aside might be better? I am currently striking out two for two at the moment in the rheumatologist department, trying to find someone who takes my concerns with at least a bit more consideration than what I have had in the last few years.

3) On August 28th, I am finally scheduled in to have a muscle biopsy done. I say finally because back in January, I had the EMG testing done to test to see if there was any signs of weirdness in my muscles. Well, lo & behold, there was and with that information at hand, Neuro Doc sent the information back to Rheumy II with the recommendation that she book me in for a muscle biopsy… you can see where this is going, right? Well, time passes, more time passes and even more time passes. No signs of an appointment.

When I was originally booked in for the EMG, the person on the phone said that there had been a queue for months and they were, slowly but surely, getting everyone through. Sometimes patients opt for having the procedures done sooner by paying a private clinic instead of waiting, so she needed to contact everyone as their name came up in the system for their turn and give their appointment to the next patient if they’ve already had the procedure done elsewhere. I figured that this was the same circumstance for muscle biopsies and just had to wait for my turn.

Well, it turns out that Rheumy II saw no reason for me to have the muscle biopsy which is why there had been no word on an appointment being scheduled, even though Neuro Doc saw a good reason for it to be done. Her opinion was that having the biopsy would most likely not change the way in which she dealt with my care of SALLY or the lupus, nor would it be any miraculous answer as to why I have pain issues or change the way in which my pain was being treated by Fam Doc. Again, I understand that she has absolutely no interest in having information that does not directly have to do with SALLY or Lupus, but honestly, if it gave us some answers about anything that’s going on with my fucked up body, that’s a good thing. Plus, in my opinion, that would be good information to have under our belts and would help Fam Doc, even in a minor way, help to discover ways in which we could manage my pain better. *sigh*

4) And now the big news: A couple months ago, I met with the gynaecologist I was referred to by Liver Guy. During a scan, post-op from my liver biopsy, it was discovered that there was a 10.5-11.5cm mass hanging out on my left ovary. I’m (potentially) having surgery at the end of October to have my left ovary removed. I say potentially, because it all depends on how Hawt Doc & the anaesthesiologist who will be doing the surgery feel about me and Sally. As far as Gynae‘s concerned, the mass is not cancerous, and it’s not scary, but given my current health conditions, he’d rather have it removed now under controlled conditions rather than potentially having to face the mass doing its own uncontrollable thing and then it does become a scary situation.

There’s not really all that much more that can be said about the whole surgery thing. Ordinarily, the surgery is relatively easy and done laprascopically in day surgery, but because of the position in which I would be lying on the table, on an angle with my head lower than my feet, that may put too much stress on my heart & lungs. Gynae figured that because of the PAH, the likelihood is that he will have to do the surgery under general anaesthesia instead, which would make the procedure a couple of days stay in the hospital instead. If by chance Hawt Doc or the anaesthesiologist is not comfortable with the idea of me doing surgery at all, then we’ll basically just have to sit, wait & watch the mass. Seeing as I have my appointment with Hawt Doc on the 27th, that’s actually going to be the day I find out if surgery is a go or not, then I will have a pre-op pow-wow, so to speak, with Gynae in September to discuss any other stuff which may have cropped up with the doctors since my first visit.

As an aside, for curiousity’s sake, if we were ever considering the idea of having a family, how would that affect our chances if we’re removing an entire ovary? He said that I still had eggs in the right ovary, until I mentioned that I had done chemo a few years back, to which he thought a moment, then offered: if it’s not unsafe at the time, when he removes the left ovary, he can test the right ovary to see if there are any eggs. IF there are eggs, then it means that we could potentially try to have a biological child if we wanted. At that point, it’s just a matter of finding a surrogate mother willing to go ahead with the procedure and $20,000 to cover the medical costs.

His comment surprised me — like *mind is blown!* surprised. It was a lot of information to process even though it was really just a small tidbit of information. Up until this point, every doctor has said to me since the PAH diagnosis, “I’m sorry, but no, you can not get pregnant.” but never told me outright why.

Well Gynae told me why: The likelihood of death during pregnancy is 95%. That’s a guaranteed death sentence with the unlikeliest 5% chance of not dying, but with a whole host of accompanying complications that wouldn’t make it safe for myself or a potential child. It’s kind of strange… everyone wants to hear “95% chance!”, but you never hear it used in a definitively negative way.

So, the possibility of us having a biological child once again raises to the surface all sorts of thoughts and issues again as to whether or not we could/should consider having children. As it stands now, as much as I am sad to say it, we are still not going to be have children, even if we discover I have viable eggs, making the potential of it being a reality.

So yea, that pretty much takes you up to speed on what’s been going on with me, SALLY & “friends”.

Hope everyone in intarwebz-land is doing well and enjoying the summer of 2012.