Monday, September 1, 2014

God said "YES."

A quick update for those of you who aren't facebook friends but follow here.  God made the way, and I will begin my plasmapheresis treatment tomorrow.  I saw the nephrologist Friday afternoon, and he humbly held all the research and my case in his lap and said, "I don't understand it, but I will help you."

His office then spent the last few hours of their Friday before a long weekend doing everything they could to set up my treatment for Tuesday.  Here's the schedule for tomorrow:

My dad will pick me up at 5:20 am

I will have lab work done at 6:00 am at Aultman hospital.  (Please pray they can get a vein.  This is often a traumatic part of any medical treatment for me.)

We have to be over to Mercy hospital at 7:00 am in same day surgery for the placement of the jugular catheter under sedation.  We are doing this at Mercy because they are considered in network for my insurance, so it's one way to save a little money.  It's a little comical this is a consideration at this point, but I will not have to pay anything up front for this part which helps!

Once I am done recovering we will have a few hours to rest and eat something before  heading back to Aultman hospital at 1:00 pm for the beginning of my pheresis.  This should take 4-5 hours. Needless to say, it will be a grueling day.

I will find out on Tuesday what time the rest of my treatments will be scheduled for on Wednesday, Thursday, Friday and Saturday.  We have decided to take no breaks in between days of treatment.  I will not be admitted so each day I get to return home and sleep in my own  bed and see  my family.  I am nervous about the catheter in a home setting only because I had issues tolerating the dressing as well as a lot of pain the first day or so after my last one.  They take a little knife and literally cut into your neck.  What's another scar, right?

I am feeling so badly today I will stay in bed or on the couch.  I had a fall in our kitchen on Saturday night and yesterday was painful but today I can barely move.  In addition to other symptoms returning that prompted me needing treatment again I have a stabbing knife where my bowel was resectioned in March, 2011.  When my autoimmune flare gets this bad I can feel endometriosis growing and a knife in several places where it was the worst.  I had no abdominal or pelvic pain during my three good months.  It is back.  I think I get most frantic about this pain because I am actually much calmer about brain surgery and fusions and spinal cord stuff than I am about getting cut again in my core.  I know what this pain is.  There is not much else this disease could eat away, but I'm told it will find anything, especially with loose connective tissue like mine.

Prayer requests?

1.  For this treatment to be fully successful and give me more months of life.  I know some people wondered in the past why I continued to fight so hard while causing stress and more financial strain on my family. Each surgery I've had has given me a better life, a more whole life, but this last treatment gave me REAL life.  I would do anything to have a few more months like that.

2.  For this treatment to work without needing the IVIG treatments following which are wicked expensive and perhaps what caused my meningitis last time.

3.  For every detail of the treatment and my body during it.  There are risks, especially during catheter placement tomorrow and during the pheresis.  I have a history of bleeding and clotting,   They run ALL my blood from my body each session and separate out the "infected" plasma giving me new plasma each time.  There is no way to explain what this feels like.  I also am not sure how the pace of every day will affect me except I know I will be exhausted.

4.  Please pray for Dan and my girls as they try to continue daily life like work, school, homework, volleyball for Laney, etc. while I am in this rigorous week.  We've always had the buffer of me being admitted and even far away. This is good for them, I think, and bad for me.  I am so grateful to be able to come home and sleep, something I just can't do in a hospital setting.  Please ask they will have grace for me and the support they need to keep up their responsibilities.

5.  Please pray for my dad and mom.  My dad, who quite honestly gets queasy about blood stuff, is taking me tomorrow during so many appointments.  My mom, who is oh so busy with  the beginning of another school year, is taking the responsibility of the girls after school until Dan can get home.  I don't know how the rest of the week will go with times and support, but I know for sure they will do anything they can.

6.  Lastly, please continue to pray for God's provision in all this.  He has never brought us to an answer of "yes" without making the way.  It's often last minute like a ram in the thicket.  Choosing to go to Aultman outpatient is more costly to us out of pocket than being admitted at Mercy.  Even though my out  of pocket deductible is met I have to pay the difference between the contracted rate and the rate out of contract.  Me, not having to be admitted, has so many benefits in the way of real rest, more emotional support and less exposure to infections.

I want to shine a light.  God planned this in a way for the people I am to meet and interact with.  He's still in the soul business.

I'm grateful. We are grateful for your love every step of this journey. We would have lost hope many times had it not been for the encouragement of you and the anchor that holds secure, our Jesus.

God said "YES."

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