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.



Okay. So, The Hubbs’ sister asked me recently whether or not we’d exhausted all our options in terms of having children and I don’t remember whether or not I’d written anything here in detail about our thoughts on having a family and our reasons for it.

In case anyone was wondering, but never asked for fear of offending, or hurting my feelings, or was just too uncomfortable asking yet still curious about the answer, here it is in probably more detail than you’d ever want to know.

I was just feeling sorry for myself the other day is all — I had gotten in the mail a big envelope from the Pulmonary Hypertension Society of Canada (asking to see if I wanted to join their little “club” :P~ ) and at the back of their first newsletter was a question regarding pregnancy and PAH.

I didn’t realize that there was a 30-50%  maternal mortality rate during pregnancy itself, which was the reason why all my doctors pretty much said at that point that we’re not allowed to have babies for absolute certain. Patients with PAH have a limited ability to cope with the sudden increase in blood volume, as well as a lot of the medications that I am taking (not just for the PAH) are extremely harmful to the fetus.

Before, it was kind of still a little “let’s keep that little smidgen bit of hope alive cuz there is a tiny, wee, little, itty bitty, minuscule chance that we could still maybe have a baby” according to my one doctor. Which btw, I always thought he was just saying this to make me feel better, but no, in fact he truly believed that because I never had any eggs to begin with, due to a completely unrelated to Lupus/Scleroderma/PAH/etc health condition, we could have probably jump-started my body to try producing eggs even though I’d had chemo.

Yes, there are people out there who have my diseases and have children — ordinarily in the case of scleroderma, they’re older and have already had their kids. In the case of lupus, there’s a chance that some women take to get pregnant after diagnosis. But with PAH — it’s basically a 50% chance of death *95% likelihood of dying [*see recent entry re: PAH & Babies] during pregnancy regardless of how many precautions you take.

We sort of discussed the idea of having a baby through other means and adopting, but really, what it boils down to is that I have progressive diseases that are really unpredictable. After discussing it at length, we’ve pretty much come to the conclusion that it’s neither fair for The Hubbs nor is it fair for the child. The same more or less goes for an adopted child — except knowing what one has to go through and the hoops that you have to jump into to make things happen, I’m pretty sure knowing my health situation automatically makes it so we are “inappropriate candidates” as parents.

The Hubbs is very strong, but should I become so seriously ill again, to the point that I can’t take care of myself and if there’s a child’s needs to take care of while I’m incapacitated, it would be an absolutely tragic situation to have him deal with on his own.

Yes, we have family and we have friends who have already been so generous with helping us thusfar, but you don’t always want to have to lean on the people you love. Sometimes you just want to live your life together through the good and the bad. But having a child in the mix, it would be completely unfair to having that little person’s needs be (unintentionally) side-lined because of what we’re dealing with, with me.

There have been days where I cannot take care of myself and The Hubbs has worked from home to deal with my problems. There have also been a few times where I’ve had to move back into my parents house for a week or two, either because The Hubbs has gotten sick and we can’t risk me getting sick, or I am sick myself and The Hubbs can’t take that much time off to keep an eye on me. I don’t think having a child will make that any easier or better for our situation.

I realize that when you have a child, that child’s needs will always come first, and you will do anything in your power to make it so, but the reality is, for us, there is also a very distinct possibility that I will die prematurely due to complications from all my combined diseases. I don’t want to have to leave The Hubbs and a child, to face the world alone.

I suppose that’s a selfish way to look at things, but it was just something I couldn’t live with, knowing that The Hubbs would end up being a single-parent, at any time, all because I wanted to bring a child into the world.

So… that was probably a lot more than you were expecting in terms of a response, and probably very depressing to read, but I hope it made sense and gives you a little insight as to why, as much as we would love to have children and there are other ways of having them, we really can’t justify doing it in our hearts.

[categories: sally]