Health Update

I know I've been kind of MIA since the year has started, but for good reason.

So here's what's been going on...

Towards the end of the year, I started noticing signs of a flare.  But I just chalked it up to being that time of the year.

My rheumatologist had me do a couple extra tests but didn't seem too concerned with it.

Got through the holidays and went for another check up in January, thinking everything would have corrected itself.

Labs showed otherwise.  It was worse than I thought.  My kidneys were under attack again, just like in 2010 when I went through Stage IV kidney failure.

Rheumatologist increased my meds to the max dosages to try to stop the damage being done.  After 2 weeks of no improvement, she referred me to a kidney specialist.

The nephrologist ran a few more tests and ordered another kidney biopsy.  He was certain I was right back at Stage IV, but feared I might even be at Stage V (end stage renal failure).

So on Tuesday, 3 Feb, I had a biopsy done.

Took my Traveling Quilt with me to work on while I waited

The biopsy procedure went well.  I was pretty sore afterwards, but they were able to get 3 good samples.  And actually, the worst part of it was how badly my arm bruised from the IV they put in.

Day after biopsy

3 days after biopsy

Because of the high dosages of Prednisone that I have been on, my veins are extremely fragile and I bruise incredibly easy.  This doesn't hurt, it just looks really bad.

Since all this has started, Emma has been very interested in becoming a doctor and she checks my bruise everyday and gives me her diagnosis.

"The doc is in."

She has also been getting up early with me and reading her Bible at the table while I read mine.

Writing down Bible verses in her notebook.

She has grown up so much since this all started... sigh... the Mommy guilt has been in overdrive watching her, watch me, struggle with everything...

Anyway... we were told we would have to wait until next Tuesday to find out the results, but because of the severity of the situation, once the lab techs saw the results, they called my doctor, who in turn called me and said we need to talk.

So on Friday, Brian and I went to see my doctor.

Results showed that not only do I have advanced Stage IV, but also Stage V lupus nephritis.

My lupus is in a full blown attack on my kidneys right now.

Stage IV is both the most severe and the most common.  It means more than 50% of my cells show signs of some degree of damage, lots of inflammation, and there is significant injury to my small capillaries inside the kidneys.

Stage V means that on top of all that is going on in Stage IV, I also show permanent damage to some of those cells and the basement membrane is being compromised.  There is excessive protein spilling and severe swelling and pooling in my lower extremities.  I also have very high cholesterol (which, being that I've been gluten free for over a year now, means its all because of my kidneys failing and not because of a poor diet) and I have dangerously high blood pressure (even though I've been on blood pressure medication since 2010).

That is my thumbprint pressed into my very swollen ankle.  This is on a good day...

The kidney doctor has commented several times how he's never seen a case like mine.  He said typically, with a Stage IV diagnosis, the patient is on dialysis within 2-3 years...

And not only have I not needed dialysis in the past 5 years, but I also had a beautiful, healthy little girl since then!  Though that pregnancy was the hardest and scariest 36 weeks of my life, both Brooklyn and I made it through and she was unharmed by it all.

My only response to him was simply "God is GOOD" and I have amazing prayers warriors.

So what does all this mean?

Well, basically, we are at a critical point in my journey.  Doc believes there is a LOT of hope though.  He says the Stage IV part of it is the worst, because even though Stage V is permanent damage, only 15% of my kidney cells are permanently damaged.  So that's good, it's still bad news, but it's "good" bad news.

He said my current meds have done an okay job... until now.  But we need to counterattack and do it quickly.  We do not have the luxury of waiting.

So, Monday morning I will start a 3 month, twice a month, series of intravenous chemotherapy at the infusion center at the hospital to hopefully stop any further damage to my kidneys.  

It will be interesting to see how my veins hold up under this treatment plan, given the way my arm looks after just an IV for my biopsy this week.  Because, not only do I have to go through chemo, but I have to stay on the high dosages of all my other meds except the current kidney medication I am on.  I will stop that one when I start chemo.

Luckily for me, Doctor Emma, is on-call 24/7 and will make sure her patient is doing okay.

And if she doesn't do a good job, then Cowgirl Brooklyn will ride in and save the day!

Yee-Hawww

I love how different our girls are.  Emma is definitely the compassionate, nurturing, sweet hearted one.  And Brooklyn is my comedian.  She is always trying to cheer me up or make me smile.  I love it when she climbs up on my lap and sings me songs or tries her best to have a staring contest with me and ends up giggling so much her whole body shakes!  She has a great way of making all my worries disappear.


So that is what has been going on... I have always known this could be a possibility, just never thought it would be a reality.  But if lupus hasn't figured this out yet, I'm not easily brought down.

I'm a fighter!

Brian and I want to thank everyone who has gone out of their way to help us in the past month while we have been going to all the doctor appointments, hospital visits, lab visits, weighing out all our options, trying to figure out what is best for our family.

I cannot even begin to express the gratitude for the overwhelming support from all of you who have been emailing me, checking in on me, sending me encouraging scriptures to read, and for even just noticing my lack of posts on Facebook and sending a little note to see if everything was alright.

And for those who have added our family to your prayers and put us on your church's prayer lists, we can't thank you enough.

And for the flowers and cards, and care packages, to not only me, but to our girls and making sure they are doing okay with everything going on.  My cup runneth over.

Our reasons for every decision we make.

We are so thankful we followed our instincts and moved to Seattle.  Not only am I in a better place for medical care, but the overwhelming support from our neighbors, friends, and family in this area has made this whole ordeal a lot easier.  Taking the stress out of who can watch the girls or take them to their different activities or get Emma on/off the bus or come over and play with them so they don't notice how sick I've been feeling or help Emma prepare for her next belt in Taekwondo, or have "tea time" with Brooklyn, or just letting me talk through all my fears and frustrations and helping me work through this, has helped tremendously.  We are forever indebted to you, thank you, from the bottom of our hearts.

It has been a rough 4 weeks, but now that we have a plan in place, we are very optimistic this will work.  It HAS to.  I have these two precious girls to raise.

 

And the most amazing husband to share this life with.  See, lupus doesn't just affect the individual, it also affects the spouse.  Brian may not have to deal with the physical part of lupus, but he has to deal with this chronic illness every single day as well.  He does it with so much patience, understanding, unconditional love and support, and all without complaint.  He is my rock, my shield and protector from the outside world, my shoulder to cry on, and occasionally, the one whom I take my frustrations and anger out on.  But every day, he steps up to the challenge and far exceeds any and all expectations.

Not only is he a blessing to me, but he is showing our girls just how a husband and father should take care of his family.  What more could a girl ask for?  I thank God every day for crossing our paths all those years ago.

Sorry for the mushy-gushy stuff, I just felt it necessary to give the man who is making this as easy as possible for me the credit he deserves, my husband.

That about wraps up this post.  I do not plan on being on Facebook, if you wish to leave a comment for me to read, please leave it on the blog or email me:  bevik81@hotmail.com

I want to spend all my "good feeling" days with my husband and girls, not on social media.

Phone calls take a lot out of me, I get winded pretty easily, and really only have my phone on for communicating with my medical team.

For now, I need to focus on my health.

Thank you again for all the love and support and prayers for our family as we take on this challenging next phase of my lupus journey.

"I may have LUPUS, 

but it does NOT have me."