Half the Energy, Twice the Spunk

Well today was crazy - surgery was bumped, then rescheduled then bumped until I had a semi-coherent temper tantrum and suddenly I was being wheeled down to interventional radiology. So the line is IN!! Went in without a hitch, I was pleasantly sedated, so it was all very easy.

Tomorrow is in theory plasmapheresis....

Fingers crossed.

I lay in this hospital bed, watching the sun cast long shadows over the buildings outside and I am again struck with a rush of perspective. It happens now and again, and usually I'm good at pushing it aside, ignoring it, but tonight my defenses are down. Generally it's a "what the hell happened to our life" kind of moment. And not in the "hey we won the lottery!" Way.

My body has spent the past 2 months slowly shutting down. Antibodies building up in my bloodstream have been attacking the nerves that make a human body function at the most basic level. Nerves that make my heart beat, digestive system digest, my eyes respond to light, and a whole whack of other basic things that one does not "think" about. The stuff the rest of the world takes for granted.

Tonight I lay here, while my family lives out their daily life 100km away from me. My only link is the phone, which is hard when your child cannot talk. I lay here listening to the IV pumps (yes pumpS) pushing IV nutrition into a line that sits in my heart, keeping my body nourished until my digestive system is able to pick up the slack again. I lay here and think about tomorrow morning, when they plan to put a second line in my heart, a bigger line that will come out the side of my neck. I wonder how many 'lines' they can thread into a person's heart before it starts to get cranky from all the action. I contemplate the 'treatment' they are trying tomorrow once the new line is in place and working. Like something out of a movie, they plan ro remove my blood through one section, run it through a machine that removes the plasma (liquid part of your blood) and replace it all with someone elses plasma. I will, once done, have blood made up of many other people. For hours I will sit in the ICU as they do this and watch me to see how I respond.

The theory is that since the antibodies that are wreaking havoc on my body reside in the plasma, by replacinf mine, they will stop the process.

I contemplate the drugs that they have to put me on afterwards, to keep the antibodies from coming back. Harsh drugs. Cancer drugs. The kind of drugs that make people really sick and sometimes bald. The kind of drugs with warnings on the lables about bone marrow damage and cancer as a side effect (I am struck by the fact that most cancer drugs do indeed have Cancer listed as a side effect). And yet all I can focus on is the fleeting chance that these monster drugs might actually give me some time to feel normal, and healthy. Time to go home and squeeze in as much 'life" as I can with my family before the drugs stop working again and I find myself right back here, broken and exhausted all over again.

I think about all this and know it's the right path. I know this is the best chance I have, we have, of a little bit of 'normal' (or as close to normal as we get in these parts).

I am scared. Not of the lines, or the treatment, or the drugs though. The only thing that scares me is that it might not work. Nobody knows.

Or worse - that it will work for a very fleeting period of time. I don't know what's worse, the get better and get very sick all over again, or just stay sick and find ways to manage it.

Tonight I am trying not to think about it all, but with so much riding on tomorrow... It's hard to quiet the mind.


I'll try to update tomorrow when I have a chance. Wish us luck.

I read a quote a while ago in a book. It was along the lines of "is this how it happens? That we all go bumbling along stubbornly pretending that everything is normal until all of a sudden it isn't anymore". It's a quote that so resonates with me.
I find it fascinating how much we are able to 'normalize' in our mind, and how there inevitably comes a time where 'normal' is simply so far removed from your life that it is no longer relevant.

Today was decent. I am profoundly exhausted on account of the heart and blood pressure crapping out on me, so it was spent mostly in bed. Even sitting up at this point sends my heart rate over 160.
So today I wrote, and read and had some lovely visits with family that came by.

my heart hurts for my family as they bumble along without me and I'm helpless to do anything to help, but I know they will manage.

I miss my husband. Kids. Parents. I can't wait to get back to my life again.

Weekends in the hospital are very quiet and peaceful. Good to recoup. Monday will undoubtedly be a hard day with a line placement in the morning and plasmapheresis in the ICU in the afternoon (if the stars line up). So a few days of enforced rest are probably good.

Hoping for another restful day tomorrow.

K

Well the central line didn't happen today - no time in the radiology suite I guess. Personally I'm relieved - I am still quite sore from yesterdays attempts, I'm glad for the rest.

The plan at this point is to place the line Monday morning, and do the plasma exchange that afternoon in the ICU. I will then have a second exchange on tuesday and then every other day until the following Monday.

So today was rest as will the weekend be. The TPN is working its magic and my blood sugar has been beautiful all day, which is great.

Unfortunately the antibodies have done their work on my heart - while it has managed to stay regular and healthy so far, today things went downhill and my blood pressure tanked and my heart rate shot up when I stand. It's not unexpected and honestly we were surprised it took this long to be affected - it means I am officially in a full relapse. So I'm looking forward to starting the plasmapheresis.

So it goes.

The weekend will hopefully be quiet and restful.

K

For the time being, this blog will be less about the boys, and more about keeping family and friends updated on my (moms) condition while I am in the hospital.

I have been here for 9 days now, and look ro have another 2 weeks to go at this point.

It's been a rough few days, but we are making (slow) progress.

The high dose prednisone they tried for the first week did nothing at all so on Wed it was decided that we needed to do 2 things - keep me from starving (my gut is not working at all) and try a different treatment approach.

So on Wed afternoon I had a PICC line placed in my arm (large IV that goes directly to the heart) and today they started running something called TPN (total parenteral nutrition) - essentially they are feeding me through my IV rather than my gut - I should start feeling stronger pretty fast.

That went very well - the picc line went in very easily which I was relieved with as the last time they tried to put a picc line in was a nightmare. My blood vessels do NOT like being poked and in the past any time they try to place lines the vessels clamp shut and they cannot. So the PICC placement was a huge relief.

Today the second half of the plan was attempted - they are going to do a treatment called plasmapheresis, where they run my blood through a machine to clean out all the antibodies that are attacking my nerves.
To do this they need to place another line. They tried to place the line in my neck today (picture a big IV in the neck - ick) and my blood vessels lived up to their reputation this time. The docs spent an hour trying to get the line in. Much cursing was involved. After all the work and frustration they had to give up, and I have no line.

They were dumfounded. But I believe they believe me now when I tell them my veins are stubborn.

So tomorrow I will go down to Interventional Radiology so they can try to place a different kind of line under an xray machine. I have asked if they can give me consious sedation/drug me up and they sound as though they will...

Tonite I'm sore, tired, and looking forward to feeling better from the tpn at least. Also looking forward to getting this treatment over with so I can get to feeling better.

I have the sweetest quiet little old french lady for a roomate now so hopefully she sleeps well.

Well that's tonite... I'll try to update regularly while I'm here as it's easier for family to check in.

Trying to stay positive.

K

I'll start with the good: the boys are fantastic, thriving at school and growing like weeds. For that we're thankful.

I unfortunately am not.

This spring I was diagnosed with Autoimmune Autonomic Ganglionopathy, an extremely rare autoimmune disease that attacks the autonomic nerves (the nerves that control the heart, breathing, gut, eyes, etc). Treatment worked initially but I relapsed in August and have been inpatient for a week now trying to get things under control.
High dose steroids do not seem to be working and the options get progressively crummier, so we're sorting out just what kind of 'crummy' we're willing to run with at this point.

I wish I had something profound and meaningful to say but right now I'm pissed off, starving, frustrated with my body, and missing my family.

I know I'll make peace with this and find a new happy medium but right now the 'magic train ride' that one gets whisked off on when they are inpatient (that one your expected to bump along quietly on, agreeing with and complying with every doc/nurse that talks to you, lest you be labled 'difficult') has taken it's toll and if I didn't know I would simply be back here in 2 days worse than when I came in, I'd likely march out the door myself.

Hopefully tomorrow will find me in a more positive headspace. For now I'm gonna put my headphones on, watch more food network and mope for a while.

K

Well time has managed to once again slip away on me.

The boys are happily at school.

Tyler went off to his first day of kindergarden professing excitement at finally being able to learn about nuclear physics.

Brandon asked me to program 'Carla (his school worker) is a big bug' into his communication device.

The boys are doing fantastic.

I am falling apart again, and at this point skirting another hospital admission on account of a relapse of the autoimmune stuff, but hoping to continue skirting it and levelling off soon. Time will tell.

It's always time that is the deciding factor.

Keeping on keeping on.