Living In Grace

A "Yippee Kai Yi Yay" Moment ....

We are past the 48 hour mark from the time of contamination, and not one single solitary symptom of peritonitis.

Thank you all for your prayers and support the last 48.

Now?

The kids are gone for the weekend, camping with friends.

So, I'm going to spend every waking minute with my best friend.

Talk to you all Monday!

Have a super weekend!!!

Crawling Back From the Brink...

We have been moving over the last two weeks. It's been alot of work on the part of John and the kids, and quite an adventure for me, healthwise.

First off, let me just say we love, love. love our new house. And, I promise, that pictures of the outside will follow in the next day or so- now that I find out we've had new batteries in the camera for a week. Uh!

John and I have spent several night in the front yard, in the swing, talking about how much we feel blessed with this house. Especially right now. It's a haven. As John puts it, "It's Mississippi in the middle of the desert." We both get what we love.

And Kati has taken a keen interest in the untended garden areas, so I anticipate those will be coming to life soon.

Our first night, there was a major power outage that lasts most of the early evening and night. This put me off schedule for dialysis, since the machine was useless and manual supplies were somewhere in the mess- in the dark. Did I mention we live out of town? No streetlights, large areas between houses... pitch, pitch black.

Long story short, supplies were delivered to the wrong house, supplies we had didn't make it here as we moved like we thought,blah, blah, blah. I got so off track that by Saturday night (almost two weeks after the blackout), and after me trying to manage thing and get back on track- I was completely and totally uremic.

From what I can remember of the end of the week, and that is not much, by Saturday night I had given John the heads up that I thought the ER, hospitalization and hemodialysis were in order.

I'm sorry- did the world stop turning on it's axis? It must have, for me to tell him that. Little Miss "I don't need help."..

I placed a call to the on-call nephologist, whom I adore, and his concern was not that option, but getting me some proper and solid dialysis to clear out my system. So the plan became bedrest for 2 and a half days where I stayed hooked up to the cycler full-time. And sleep.

Part of the uremia is a rash that I am fighting basically everywhere, It itches like crazy, and from the itching had come really severe bruising everythwere. I look like I went 14 rounds with Mike Tyson. Standing still with my arms down. Evidently the the uremia gets bad enough, the Epogen I take for blood count can't work- so on top of everything I'm really, really anemic. Probably 6-7 rather than 13.That is dangerous.

I am starting to come back from the brink of death. I truly believe that if I had not done what I did, when Id id it and let things continue,.I would be fighting more for my life than I am right now.

Tonight, I'm fighting low blood pressure, but we are in communication with my doctor and have a plan. I just feel like garbage. That feeling right before you faint, but don't. Sigh.

Kati is doind an amzing job of trying to keep eveyrthing going. My sweet 16 year old. God love her, she is overworked with unpacking, cooking, cleaning, etc. and needs me to help. I wish like crazy I could.

I have kinetics Friday, to see how things are going.

And we have some serious decisions to make on long term attacking of this. Hemodialysis seems the best option.

But there are huge concerns on my part, since I have been down that road before:

• Hair Loss due to medical stress caused by
• • Surgery to insert hemo graft
  • Surgery to remove the PD Catheter
  • Hemo itself
• Dealing being out of th house three days a week, for five+ hours while we home school
• The aftereffects of hemo daily

If you all could be praying that:

• My blood pressure stabilizes
• My hair grows and stays
• My blood counts come up, quickly
• Labs look good Friday
• We get everytihng in place here, so it starts to feel more like a home

I would appreciate it, friends.

GET THE BUTTON - SHARE THE LOVE

Update- Sat night

Looks like I'm on bedrest until I can get labs on Monday. FT hookup to the dialysis machine til then. At least I'm at home.

Please.

For a myriad of reasons I won't go into right now, I'm in really, really,really rough shape.

Prayer would be appreciated.

And, prayer for this family as well ...

Thank you friends.

Where's Waldo?

Two words.

Still moving.

God help us all, it's shaping up to be a long night.

More to follow ... tales galore.

Trust.

After the call Sunday, things have been a bit out of sync around here.

We continue to work on finalizing the move to the new house, in fact as we speak, I am alone here while the family is off working at the old house.

We are each dealing with this new development in our own way, and mine is to just try to trust in God.

Trust in God is something I have struggled with, and continue to struggle with throughout this whole experience.

Trust that this will all have a happy ending.

Today, is one of those really bad days.

The Call.

Let me back up and tell you a couple of highlights from the move, just to put yesterday into a bit more perspective.

We moved to the new house Friday, all day. By dinner, we were all pooped. However, God has other plans for us. The most incredible and brilliant thunderstorm hit, with the entire valley surrounded by huge sheets of lightning that hit the ground. We spent the evening on the back deck relaxing and watching God is all His glory.

Until 9pm, when the lights went out. For most of the night. Because dialysis doesn't have a battery backup, I had to sit up all night and wait til the power came on, to finish hooking up to dialysis.

By the time all was said and done, I got to sleep about 4am.

Sometime around 8, John woke me up saying that there was a Julie from Porter on the phone, and  needed me to get up. Now.

Me? Not a morning person. Now, well, not likely,

However after some prodding I was on my way to the phone.

The first words I hear are, "Hi, this is Julie from Porter Adventist. You are the backup AHP and I need to know if we have a current serum on you."

When you are actively listed, you are supposed to send in a blood test once a month, so that have a current workup on you for initially matching.

After much discussion with my coordinator, we had stopped doing this after three years, about three months ago.

Yeah.

Because I am working with Portland, and have been assured that a cadaver donor was one in a million, we had stopped.

And now, a donor might be available.

Add to that the financial costs of getting there, and living there at least a month, and we are just not able to swing that right now.

I had to say no.

I did find out today, when I called back to get more inf on what exactly happened, that the first in line recipient had cross matched and received the kidney anyway. So, we are ecstatic for he and his family. Please be praying for long life and good health for him.

But, still. I was his backup. There are 6 indicators that they match to: They call them 2 in a, 2 in B and 2 in DR. Up to 6 point possible, and I was a :2 in DR: match.

I had that one in a million chance.

I basically went back to bed after that and tried to forget abut it.

The rest of the day was awful, with the what if's.

But, I know that our reality is that Portland has to be the place, for several reasons. Money is the biggest.

And that, is killing us mentally and emotionally.

The what ifs of "if I had been the one, if I was #1 in line, if, if , if,

So, now we know if can happen and we need to somehow figure out a plan. And be ready.

Because if I can be called once, we now know it is possible.

And as my doctor said today when Called him, "How exciting, Kelli! Now you have hope!".

I'm working on it.

Update, sortof.

It's about 3 in the morning and I'm not ready for sleep. We had the best evening. considering. We had some old and dear friends who had planned to be in town to see us anyway, so we had a good visit. A much needed break from replaying this morning's events over and over in my head. The call came when we were all half asleep and not thinking straight (although this had no bearing on the decision to say no), so there are so many questions to have answered in the morning. My plan as of now is to call my social worker at dialysis, and Porter Adventist and talk to my coordinator there. Once I have some of these questions answered and can figure some things out, I will bring everyone up to speed on this morning's events. Thank you all for your encouragement. It's been a long. hard day.

The Call.

Something I NEVER thought I would have to say: Today, I got "the call". The one we have waited for, for three years. A kidney. And I had to say No. I cannot express the way I am feeling right now. More later. When I can articulate things. No. I now hate that word.