Monday, January 29, 2007

Here's to Tom, Oprah and ..... ME!

When I turned 18 (very important detail, folks) , I was told we were going out to dinner and a movie. We stopped at the local McD's- my parents and I and my best friend for "something to drink on the way". Yeah- right.

Turns out the whole lot of my friends were there and we were having a McParty. Not only did we all have to sit in the floor to play games, but we ate Happy Meals and had the perfunctory McCake- all shaped up and decorated like a Big Mac.

Then, there was my 20th birthday. I was at Bible College. I came home from a friendly dinner out with my parents and a frined named Bill- see Bill is exactly 50 years older than I. We celebrated out birthdays together for years. And yes, Bill is still around - and will be getting a phone call here in a bit! But, I digress.

I arrived back at the dorm room to found out that turning 20 at the dorm was a right-of-passage. And as much as I would like to share the details- my blood oath forbids it. I will say it did not involve any alcohol- and nothing too illegal .....

Then came 25- all a blur because I was getting married 12 days later .... 28 I had a brand new baby .... 29, another one on the way ....35, I frankly don't remember .... and now 42.

Times flies when you are having fun.

Here is to all the January 29 babies ..... Bill, Tom Selleck, Oprah Winfrey and WC Fields and the rest.

Saturday, January 27, 2007

In reflection of the last week, as I look to the future ...

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Holy, holy, holy
Is the Lord God Almighty

Holy, holy, holy
Is the Lord God Almighty

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

- MercyMe
Bring the Rain

Ok, I admit it.

THIS is the level of music video that we have reached in a house with a 12 almost 13 year and 14 year old.

Somehow- it tickles me to death.

And yes, this is loaded on my every mp3 player in the house.

And that, my friends, is ....

Friday, January 26, 2007

But of course it is .....

My Peculiar Aristocratic Title is:
Her Exalted Highness Duchess Kelli the Contrite of Dramble Buzzcock
Get your Peculiar Aristocratic Title



*snort*

(now, I was raised with better manners, but Barb started it- oh yes she did)

Now, go grab your piece o'the aristrocratic pie.

Wednesday, January 24, 2007

Hey batter, batter ... hey batter, batter ... SWING!

So, I'm home.

There will be no surgery today.

Since we started talking about this late Monday, I have tried to accept the deal. I have had long conversations with John and God, and myself at various times. And still. in the pit of my stomach I could not accept that this was the way to go.

On the way to the hospital today, I had a full-blown panic attack and just knew, knew, that this was not what was supposed to happen.

In.My.Gut.

I told John I couldn't do it. Well, actually my exact statement was "I'm not going to do it. I'm not."

Thus, as he was driving me to the pre-op appointment with the surgeon, I started making several calls to both my doctor (who was on rounds and had to be paged) as well as my PD nurse.

Options, There HAD to be options.

And there is one.

I will require me to be more fully and obsessively compulsive about three things:

1) My fluid intake. No more than 48 ounces a day. For someone who is considered a human faucet- this will be the hardest.

2) My weight loss. I need to lose 50 pounds for transplant. Alot of this has been added through fluid retention. If, when you were pregnant you had pre-emclampsia this is what I'm talking about. Stay Puff Marshmallow Man time, folks.

3) Exercise. We have committed as a family to walk at the park every day there is no foul weather- and at home with a DVD if there is. And, I need to make full use of the home gym we already have.

If I can do these three things, I stand a chance of staying on home dialysis and not going on hemo.

My body no longer can handle fluid intake, so unless I can control this, I cannot stay off hemo.

I feel like, in my head, I have turned a corner this morning. I have been scared half to death of something I didn't ever want- and it may be the catalyst I need to get moving again.

When I do things right, my numbers look great. When I don't, they don't.

When I feel good, I can get lazy. I need to remember that when I am feeling great, it is for a reason and not get lazy.

I told you, God has to use the 2 by 4 on this stubborn brain sometimes.

Batting practice is now over.

We return you to the regular game in session.

Tuesday, January 23, 2007

Ok, not the fashion statement I was hoping for....

I have been on home peritoneal dialysis since May 8, 2006.

This involved having a 2 foot rubber tube setup surgically implanted next to my belly button. About a foot of it hangs out. It's lovely, really- like the umbilical cord was never removed. It SCREAMS "hey look at me" when on occasion it falls out of it's secret hiding place and swings around my knees at the WalMart. Really, it does.
Well, NOW ... since I've conquered my fear of looking like an elephant gone wrong in public, and because frankly there was this little thing about my dialysis not working anymore -- causing me to lose another 50% function of the remaining kidney -

I get to get one of these :

The bumpy part on the right in the middle is the "cuff" - all the tubing on the left of the picture will be inside the jugular near my heart (yeah- thrilled on that note) while the lovely blue and red ensemble will dangle softly from under my collarbone and lay on my chest:



Can you say TLC'S WHAT NOT TO WEAR people????

We're thrilled to pieces, we are- the kids can't wait to see how I manage to go into public without drawing stares galore (they are young pre- and teens, ya know) and frankly, I'm lucky to walk and chew gun at the same time without falling over. Now? It's a sitcom waiting to happen.

And J? He's threatening to put in RV hook-ups to attach me to in the bedroom. Now THAT folks is dedication and love personified. Jealous, arent you? I know you are.

I'll be having emergency surgery to input this tomorrow morning at 12 noon MT here at Deaconess Billings, and will be there 'til Thursday or Friday. They will be doing hemodialysis to make sure everything is in sync. Then, we start the regular routine of Tuesday, Thursday and Saturday with a 3-5 hour dialysis session at the hospital every week. And did I mention the ONLY opening they have is 7:15am. I mean, holy strawberries batman! We're in a jam. ACK!

So it will quiet around here for a few days in this corner of the blog-o-sphere. Frankly, I hadn't planned on celebrating the ole celebration de' birthday at DBC. I thought a nice dinner and seeing Happy Feet or Marshall would be abit more fun. But, I'm learning to celebrate those birthdays any way I can :) 42 of 'em baby! 4-2.

J has sworn to give Boomama a call with updates, if anything happens. But, heck! God's over this whole thing. So, hopefully, it's all quiet there, too.

Y'all have a great week :) See you in the funny papers.

Sunday, January 21, 2007

WOW ... doesn't start to cover it.

Back when BooMama contacted us to do the "For Kelli" fundraiser, her goal was to cover at least the first months COBRA payment.

As the date approached and hit, several of you emailed her that you were hoping to raise at least the first year's COBRA payments.

Well, the numbers are in and ..... we didn't hit the one year mark .....

However!

What y'all DID do, was raise THE FULL 18 MONTHS worth o'payments.



We cannot even BEGIN to express our sincere thank you for the chance at life that you have given me.

There are no words.

Things that make you go ... aaaaaah

Here's the scene J and I encountered at Michael's Crafts today---

Scene: Young mom holding sleeping newborn boy, standing next to young husband:

Wife: I can't believe he's finally asleep

Husband: Here, I'll take him and drive around in the car. You stay here, shop AS LONG as you want. Call me on the cell when you're ready to leave.

Us: They'll make it.

Friday, January 19, 2007

I'm Dying..... LITERALLY

Now that I have your attention ...

click here before the panic in the streets starts.

It will all make sense soon, young padawan.

Wednesday, January 17, 2007

How Do I Even Start?

*Updated :
9am MT
Friday 1/19/06

$9160. has been raised


It started with an email from Boomama.

Now, we have emailed some in the past (especially about some granola) and the fact that we have both been in Louisiana and love the same things: The Walmart and The Stein Marts being two.

This email was different.

To catch some of you up to current events, recently I had posted this, then this and then in full meltdown - this. And finally, once my brain came back into focus, I posted this.

During these posts, Boo and I exchanged emails and comments.

And then.

She had a nudge from God. She wanted to do something -and so she stepped up to God's nudge and ran with it. She had faith.

At first, we were the hesitant ones. we are the helpers- not the helped. We have not laid this on anyone because it is "our way". And God? He gently said this to us when we prayed- "Get out of MY Way, please." Let me bless you. And we did.

We have been overwhelmed and blessed beyond anything we imagined. Financially- , I think everyone has seen the fruits of that. Emotionally, we have been overwhelmed with support, peace, prayerful covering. Physically- its been a good few days for me. We'll take those when they come. As well, there have been several offers from people willing to be a living kidney donor, a quilt is being made, and most importantly the prayers of people I will never meet this side of heaven. As I told Boo several times yesterday and we talked on the phone- what a love a thon we will have in heaven.

Hundreds of you posted Shannon's "For Kelli" button on your blogs. I will never be able to find all of you and say THANK YOU. So- THANK YOU.

Susie from Bluebird Blogs is donating 20% of her business for January 11th - 21st. She does bee-u-tee-ful stuff folks. Go here for details .... THANK YOU.

All day yesterday, Boo and I kept saying over and over - What do you say? HOW do say anything more than THANK YOU. It seems so poor and inadequate. I can NEVER express what all of you have done for our family in ways I don't think we can even begin to realize

Bottom line is folks- I am speechless.

Bloggityville is a family, a community of (to quote Boomama) the most.awesomest.internets.anywhere. I'm honored to know each one of you.

And that is a place you rarely, if ever, find me.

I think this says it in ways I cannot:

Lord I wish I could praise
You with adequate words
But You leave me speechless
And I so long to sing
You the song You deserve
But it would be endless
I long to move Your heart,
to bring You something new
To tell how great You are
'till my praise to You...


Is like the ocean breeze
blowing on Your face
Like a summer sun
with its warm embrace
Like a gentle rain
plays a symphony
That's what I want my praise to be
Like a fragrant rose
in the early spring
Like an eagle soars
when it spreads its wings
Whatever Lord
You may need from me
That's what I want my praise to be to You


Psalms 115:1 everyone .... and Thank You.

Also, please - be praying for Emma Grace and Ashley They need us to stand shoulder to little shoulder with them.

Tuesday, January 16, 2007

**URGENT** Prayer Needed - Thursday morning

**Updated Thursday morning- Emma Grace has been admitted to ICU. Go here for details. her heart may be failing. We need to pray now.


Please go read this right now and then go here and pray as well - pray hard. Ashley and Emma Grace need us to storm the gates of heaven right now.

Lord,
Be with both of these familes and touch Ashley and Emma Grace. Heal their hearts. Hold their families in the palm of your hand.

Thank you, Abba Father.

Wednesday, January 10, 2007

Monthly Update

Looks like we are increasing dialysis now.

My numbers have gone awry again, in a much bigger way. Specifically:

  • BUN is up to 101 (should be 75 maximum) - this is the poisons not processed by the body
  • PTH is up to 6.6 - this means calcium is being leeched from my bones into the blood, due to a lack of Vitamin D production (i.e. bone disease)
  • Red cell counts are at 9.9 (minimum 11)
Basically, I've lost a percent or two more of my own kidney function (we've been holding at 13.4%) so we will need to manually dialyize to keep things moving.

It's all good.

Monday, January 08, 2007

A Friend Needs Prayer Today

Please join me in praying for Barb and Rob. Rob is having shoulder surgery today. You can find the details here.

Sunday, January 07, 2007

This is My Story, Part 2

*Part 1 can be found here ....

I was pregnant again. We were in shock and the Dr.'s were not thrilled. Having just had major surgery, there was little to no chance of the baby surviving. And 7 weeks later, we were in the throws of another emotional miscarriage.

At this point, we thought we were done. I knew I would never carry a child to term.

The Dr.'s put me back on birth control pills to regulate things out, and we moved on. Slowly and painfully. To be honest, our marriage barely survived at this point. We were both so broken emotionally that we could barely function ourselves, let alone support each other. It was alot in the first 2 years of marriage. It was like living in a tsunami wave that just hit you wave over wave over wave for months and months.

The spring found me pregnant again- much to my shock. We counted, 4 weeks, 5 weeks, 7 weeks, 10 weeks, 13 weeks. At 13 weeks we allowed ourselves some hope- and at 16 weeks we told our families. The pregnancy went fine until what we estimated was week 40 and I developed pre-enclampsia. I gained 20 pounds in fluid from Thursday to Tuesday and continued to gain. All told, I gained 60 pounds in two weeks and needed an emergency c-section. Kati was born at 9:10am the next morning. 5 weeks early. They had my due date completely messed up- but she was fine.

Jonathan came along 14 months later- a text book pregnancy. Our family was complete.

Unlike most pregnant women, I had no bladder or kidney infections during this time. In fact, I was fine until a single blood test during a routine yearly physical in January of 2006 should "something amiss" and I was referred to a specialist.

My remaining kidney had failed to 13%. I had just turned 41 the day before.




Saturday, January 06, 2007

With Calmer Heads Prevailing

First of all, I have been overwhelmed with peace in the last 24 hours. I stood back and took a breath, and felt the support of the prayer support going up around the country. Your emails and comments have been a touch of grace for us.

Here, for those of you that have asked, is the layout of our battle over the next 6 weeks or so, tied into how the whole "eligible for transplant" process flows- as I understand it. There is an entire team in Denver, at Porter Adventist, that handles this- but these are the pieces I am aware of at the moment.

First, I have to be accepted as a viable candidate. This involved a recommendation from my nephrologist, visits with each person on the transplant team - Nurse Coordinator, Surgeons, Financial Coordinator and Social Worker. This was done in September. PASSED.

Next came the tests- 29 vials of blood, EKG, Stress Test, Mammogram (joy), Pap Smear, Hepatitus Vaccine Series, and a bunch of other vaccines. PASSED.

Fast forward, slowly, to now.

I have passed all the tests and will be presented by Karen, my Nurse Coordinator at this month's review. All of the transplant teams have to review each file and all sign off as OK. This way, no one can recant later and say "I would nto have operated on her". The biggest obstacle is that I need to lose some weight for the procedure, but can be approved for the list while that is continuing to move along.

Once that is done, and I'm "on the list" then we look for a living donor. I need a donor with a or 0 as a blood type, no high blood pressure or diabetes. The good news, well the GREAT news, is that Medicare covers the donor medical at 100%. we simply need to pay for airfare and hotel stay. The procedure for the donor is pretty in/out. The technology is basically like sucking it out with a straw. Well, not literally- but that is how it was explained. Basically a very short recovery and the donor is home in days.

Once on the list, I will be eligible for a cadaever donor as well, but prefer a living donor only because a living donor kidney lasts an average of 15 years- longer that a cadaver. At my age, if all goes as planned, I will only have to do this twice in my life. The match for living can be more precise as well, for medical reason that are way too hard for my brain to comprehend, due to things that can be done ahead of time to prepare the two people for success.

Either way- it's life. And a gift that no one can fully fathom. I can't even fathom it- even from where I sit.

The other more exciting and terrifying aspect we have to deal with is the financial end of it. I currently have Medicare which will cover 80%, and private insurance which covers 20%. We still have some costs involved-including 1200./month of anti-rejection meds post-surgery. We are dealing with how that will be covered, but have time to save.

The issue now lies within the private insurance. I am due to lose my insurance, unless we can cover COBRA in February. My work has told me they will keep me on as long as they are allows- they have been amazing through the entire process. I have been there three years, and its a fast growing company. But, we are family and they are trying to help where legally possible. John contracts with them as well, so they seem to have a vested interested in us. Praise God.

If I lose my insurance (COBRA rates being too high) then we will have to show the ability to pay the 20%, even if over time. No one can give us an actual amount, which I can understand, but the rough figures are $50-100,000. Choke. Without the ability to show that, we are a no go.

So, the big and the small of it. The very big.

Oh- and did I mention Kati needs a root canal not covered by her insurance? and a crown.

We are laughing all the way to the bank.

And continue to pray. Hard. That God will reveal His Plans abit faster, if possible. But in the meantime, know that we are awash in your prayer and support. It's an oasis in the world of melting down.

We thank each of you- our church family, friends, sisters and brothers.


Friday, January 05, 2007

Just Me God

God,

It's me. Kelli. Down here in Montana. Bad news today, huh. Can't really swallow and process it all so I'm down here on my knees. I need to ask for some things- really specific things today. You know it's hard for me to ask for things for myself, but I'm here. Asking. Begging, please.

I need to live. I want to live. I want transplant. I want to see the kids grow, graduate and marry. Have their own families, be happy. I want to grow old with John. I made a vow to live out my life with him- he got the raw end for "in sickness and in health"- but I'm not really for the "til death due us part"- neither is he. But to do this- we need your miracle. Fast.

We need your resources, the fatted calf- your amazing touch. We need you to step in.

So, here is the list. I don't' think I've ever come to you with a list- but its the list we made and now I need you to know our hearts, our situation, our need.

- We need my company to keep me active and on our insurance until March 31

- We need for COBRA to come in at a monthly price we can afford so I have insurance for another 18 months

- We need John's boss to add more work to the queues so he is able to financially support us

- We need for the LTD Office to have a change of heart and not hold back our payments for 4 weeks, right when the COBRA payment will be due

- If we lose my insurance, we need to find a Medigap in Montana that will take me since I am under 65. I cannot find one yet.

God, without insurance, I will die. I will not get transplant. And we have about 6 weeks to figure this out.

I'm struggling with my ability to trust you in this and I'm crying out that you will give us peace.

I know you are able. but I'm so tired of being tired and afraid and streesed and crying that I just struggle to pray anymore.

Abba Father- I'm crying out for mercy and the ability to live.