Health Update

This is how my past few doctor appointments have gone... 

"a combination of two blows delivered in rapid succession"

Where to begin... how about with the kidneys.

I talked with my nephrologist recently.  

My kidneys are at Class III and Class V lupus nephritis.  

And the short version of the rest of the conversation goes something like this:

• 70% of patients do not need anything more than routine checkups after receiving the amount of chemo I received in 2015

... I fall into the 30% category

• there is not a lot of data about how to treat patients who fall into this category 
• since most patients don't live this long with a case this aggressive

... he is amazed that I'm still alive after all lupus has put my body through

• he has reached out to other colleagues and researchers at the University of Washington to join our medical team to come up with a treatment plan

... they are not sure their plan will work, since we are in uncharted territory here

• we will do 4 weekly, back to back rounds of chemo, in which that drug will be in my system for the next 6 months

... I will have no immune system to speak of

• doc said he really wished I was 55 instead of 35, would make this not so sad

... since I have a good 20 years before I go through "the change" and lupus is heavily influence by female hormones

He just kept telling Brian and I that he was really sorry.  He honestly thought the last round of chemo would have given me more than a year of relief from lupus.  But he's doing all he can to get this under control.  So here in a week or so I will start chemo.  

Now, for the second punch... 

So, over Christmas when I went to the ER for chest pains, they did a whole bunch of tests.  And an x-ray tech noticed I had several cysts show up on my lungs and as a side note, said I might need to follow up with my regular doctor about it.

Since the cough and the pain has not gone away, my doctor ordered a CT scan of my lungs recently to see what was going on.

Turns out... 

I have something so rare, that only a 100 other patients in all of America have.

It's called,  

Lymphocytic Interstitial Pneumonitis 

or 

LIP

Which is beyond crazy!  Especially since, 

• I've never even noticed an issue with my lungs before.  
• I've never smoked.  
• I don't even have asthma.  

I asked the doctor how on earth could this have come about???

You guys are going to LOVE this!

Since I've been in a prolonged fight with an aggressive form of lupus for over 10 years now without very long periods of remission in that time frame,

  the effects of my LYMPHOCYTES being out of whack

 are creating pulmonary cysts in the lining of my lungs.  

I asked him about how many cysts are there... 

 over 100  

And some of them are quite large in size.  And they are spread out all over both lungs.

Awesome.

He said there was NO CURE.

Of course not.

He said it is so rare they really don't even know how to treat it.

That is NOT helping, doc.

He said, 

"I have to say, I looked at your medical file before our appointment, and I'm kind of amazed at all you have been through with your lupus.  I'm honestly surprised your alive.  You are definitely a survivor!"

You're not even the first doctor to tell me that THIS week!

So I asked him what is the biggest concern here.  

Basically he narrowed it down to two things:

1.  Could be pretty low key and nothing to concern myself with, the worst that could happen would be a COLLAPSED LUNG.

... ok... 

that doesn't sound too terribly bad... doesn't sound great... 

but I can survive a collapsed lung.

OR

2.  Over time, since cancer seems to run in our family, I am considered a HIGH RISK for one or more of these cysts becoming cancerous.

... hmmm.... well that does put a damper on things... 

Ok, doc.  

What do I need to do, I have a 7 year old and a 4 year old 

and 

I'd REALLY like to stick around for a long time.

  He said honestly, the best thing I could do for myself is to get lupus under control.  If I can tame that beast, it will stop wreaking havoc on my lungs.

...riiiiigggghhhhtttttt.... that is proving to be "easier said than done" 

So that is where we are.  

Once I finish chemo in 5 weeks, I will go back and see the lung doctor... he has a few more tests that need to be done in order to get a better picture of how serious these cysts are and collect more data. 

 Since there are so few people who have this disease I feel my purpose may be bigger than just fighting it for my two beautiful daughters.

My cousin, Lori, sent me quite possibly the one thing I needed to hear more than anything.  And though she doesn't like the spotlight... suck it up, Lori, you deserve a huge High Five for this.  

She said,

"Do you realize you are accomplishing exactly what you set out to do? YOU are helping to find a CURE. Literally....you are. You have already made a difference. Pretty sure that there are several doctors, nurses, lab techs and others that have learned a thing or two about that mysterious attacker called lupus. YOU are making a difference. Every. Single. Day. That is truly amazing."

She helped me put things in perspective.  She pointed out that I might just be around so that more data points can be collected to help in the efforts of finding a cure... not only for lupus... but quite possible for LIP.  

Because I'm guessing... 

I might be one of only a handful, 

if not 

THE ONLY ONE 

who has 

lupus nephritis 

and 

LIP.

God seems to use us in mysterious ways.  

We don't always understand the "why" but putting our faith in His purpose for our lives sure makes these obstacles in our journey a little easier to endure.

2 Tim 4:17

"But the Lord stood with me and gave me strength."

(for those not on Instagram, I've been illustrating in my Bible for over a year now. Highlighting verses that mean something to me.  This one I did to help me go through my next round of chemo.)

I don't know how things will work out as I head in to this next season of fighting lupus, but I know that I won't be alone.  

I have my faith. 

I have my family.

I have my friends. 

And I have an amazing medical team 

that is working so very hard to help me.

Thank you to everyone who has been texting, emailing, messaging, calling, sending cards, flowers, helping me stay the course and just listening to me talk through my fears.  I truly believe I have the most amazing support system.  Love you all!

"I may have lupus, but it does not have me."