Saturday, March 31, 2007

ER on a Saturday Night - what could be more fun

For the last three days, I've been feeling sortof out of it. Rather like a case of mono coming on- can't think straight, stay awake. It all hit the wall this afternoon and I had to take a nap.
The frustrating part of the treatment since we moved here, is I don't really have a "doctor". Everything goes through the PD nurse. If they cannot figure it out, they refer you to the ER.
So, we are changing facilities which will benefit us in two ways:
* They will keep me on the prescription for dialysis that is finally working (after a year of trial and error). The current group makes it's decision based on their business model, and my current prescription is not cost effective.
* I will have a full team again of care, including a Dr. that will take emergent calls after hours.
This transition will mean we drive to their office once a month, 3.5 hours each way, but it seems like a worthwhile investment. Especially tonight.
But, I digress.
I'm off to the ER, and will most likely be admitted overnight for an iron infusion (another part of my treatment that this current group stopped cold. It's been a month since I had any iron.) My iron levels are below 9.2, when they should be at least 11.
I realize I only have to get through this next week until the transfer of my care is completed to the new group, but it's seems like forever when you're not feeling good and no one seems to care.
Be good, internets- as Boomama would say.
See you on the flip side.


Monday, March 26, 2007

Personal Journal- The Road to Transplant : Day One

I'm starting this side journal of postings to document my road to transplant. Nothing really interesting for most, but I am one who needs accountability. So, this will be my Accountability Journal.
When I started dialysis, I gained 40 pounds in 3 months. Bam! See, I dialyize with sugar water, believe it or not. So, it's like me sitting down to a bag (or ten) of Snickers every. single. day. Dialysis and an apple and I have my caloric intake for the day.
Its been tough getting any of the weight off, since I have had to use the higher concentrations of dialysis fluids. But, we seem to have found away around it now and so I have to work to get this off. Transplant requires certain things, and a weight range is included - but, if course.
That being said, I hired a personal trainer- Kathy. We have a home gym, and a pool but darn if I can't find 100 other things to do every day that use it. Sound familiar?
I talked to her last week, and decided to have her over to the house 3 times a week to make me work out. The best part is, she's affordable. She charges for one. whole. week what trainers normally charge for one.whole.hour. Yeah! And the second best part? She's not a WorkOurBarbie. I was ready to hate her before she showed up today- but Ireallylikedher. I do!
I may even keep this up!
Today we did some paperwork, figured out an eating plan and did 45 minutes of exercise. I actually sweated! We worked out with resistance bands, tubing things and a 6 pound weight ball. Considering I carry 8 pounds of fluid in my abdomen 24 hours a day for 24/7 dialysis, it's like being pregnant for, I don't know, YEARS. But the good news is - there no cursing, not even in my head.
To top it off? We just got back from The WalMart, where we bought a reasonably priced treadmill. She mentioned cardio 5x a week, and come summer ? This child is going nowhere near the outdoors, where it's literally 120 in. the. shade. Thankyouverymuch.
This is the hardest part of the journey for me - spending money and exercising. Paying money TO exercise, in my own home- well, thats a huge step.


Saturday, March 24, 2007

Can someone give me a Hallelujah?!

Study: Chocolate improves blood vessel function

NEW ORLEANS, Louisiana (Reuters) -- Chocoholics were given further reason to rejoice Saturday when a small clinical study showed that dark chocolate improves the function of blood vessels.

While the researchers cautioned against bingeing on bon bons, they said the findings of the trial were clear and called for larger such studies to confirm the results.

"In this sample of healthy adults, dark chocolate ingestion over a short period of time was shown to significantly improve (blood vessel) function," said Dr. Valentine Yanchou Njike of Yale Prevention Research Center, a co-investigator of the study.

The results, presented at the annual American College of Cardiology scientific meeting in New Orleans, Louisiana, add to mounting evidence of the health benefits of dark chocolate.

During the six-week trial, 45 people were given 8 ounces (227 grams) of cocoa without sugar, cocoa with sugar or a placebo each day.

An upper arm artery's ability to relax and expand to accommodate increased blood flow -- known as flow mediated dilation, or FMD -- was measured using high-frequency ultrasound before and after daily cocoa or placebo consumption.

Of the 39 subjects who completed the trial, FMD improved significantly in both cocoa groups -- by 2.4 percent among those who had it without sugar and 1.5 percent among those who had it with sugar. It dropped 0.8 percent in the placebo group.

"While the findings from this study do not suggest that people should start eating more chocolate as part of their daily routine, it does suggest that we pay more attention to how dark chocolate and other flavonoid-rich foods might offer cardiovascular benefits," Njike said.


Now, if they could get those same study results with Diet Coke.

Doctor? Doctor?

Anyone ?! .....

The Second Most Important Call To Date.

When I was growing up, I wondered if I would ever have children. Doctors ran constant tests on me that contained words like "nuclear medicine" and "radioactive dye". I had a few miscarriages and thought that was it. Then I had Katie, and 14 months later, Jonathan.

When I got married, the first year was hard. To the point where we separated for abit. There was growing up on both sides that needed to be done. And I learned the harder lesson that sharing your marital issues can color people's perceptions of your mate once things are ok again, even when they are awesome. Some things are never forgotten. But, I have now have a marriage that goes beyond anything I could have imagined is possible in life, and a mate that meets almost every need I have before I ask. We anticipate each other now.

When I was working out of home I wanted success, promotion, security for my family. John had his career, had reached the pinnacle of his craft and was ready to retire as a FT stay at home dad. I gave up precious years with the kids in chasing my "dream". 5 years ago I joined a company in my arena PT just to "see how the business model" was working. I sensed that home-shoring (home-based customer service agents) was the next wave of call center work. 3 years later, I was asked to join FT as a manager. I realized my dream to work at home, and home school my kids. This same company has met our family's every need since the day I was diagnosed. Every. need.

When I went in for an annual physical in February of 2006, blood was run. And my kidney failure was found. I would not have seen the Dr. for my bi-annual checkup for at least another 9-12 months. It would have been too late. I was referred to the exact team of specialists, which the exact temperament and treatment personality that I needed.

When I started researching Transplant Units, I scoured the Internet and read every graph, chart and statistic on every hospital I deemed worthy of treating me. Because, it's all about ME in this case. Every 1% failure rate is one more person that dies. So, it MATTERS. Somehow, I missed the best hospital. But, my doctors did not. They know who I needed to see.

And today, 12 months after diagnosis, tests, calls, visits, stress, letters, more tests, and presentation- we got the call.

THE call.

The SECOND best call we can get.

I am now on the national list for a donor.

Today. March 19, 2007. One year and 10 days after I had surgery for implantation of peritoneal dialysis catheter.

If you are interested in becoming a living donor, please go here and read important information. Several organs can be donated prior to death, including kidneys.

Also, please go here and think about becoming an organ donor upon your passing.

On behalf of the thousands waiting for a chance at a longer life,


~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Life is like a box of chocolates.

You scratch the bottom, expecting one flavor and bite to find the truth. It may not always be the flavor you expect, but in the end, it's the one you need.


Thursday, March 22, 2007

Addison: Urgent Prayer

Update from Sarah ... Click Here

This is from Bev's blog:

Sarah phoned me from the back of an ambulance, asking me to post this on my blog because she's away from home. Addison was diagnosed with RSV a few days ago, has been on breathing treatments, and seemed to be doing better.

Apparently last night she started having more difficulties. When Sarah took Addison to the doctor this morning, he sent her straight to the hospital. She was receiving a breathing treatment on the way. Sarah suspects pneumonia, but I've yet to hear anything more since Sarah saw the doctor.

She just asked me to let you all know - Addison needs prayer again. If you have a minute and can put this on your blog, this Grammy would feel better knowing Heaven is being flooded with requests on her behalf. I'm sure Sarah and Chris would too.

Wednesday, March 14, 2007

There goes my tail again... Oh bother.

Most days, I'm Tigger. Full of optimism, organized, witty and on top of things. Lately, about the last month or so, I've been more Eeyore. Scattered, heavy-hearted, under a constant black raincloud.

I know that part of it is losing the control of having my job, and not being able to be "needed" somewhere. Weird, because I home-school two of the best kids in the world that I love to death. But, I'm used to balancing so many balls- and now, ahem, I'm ball-less.
This move has left me unsettled. I know, through the prayers and answers we have received, and the path that laid out before us that is was the right move now. But, leaving all that is familiar, including the medical team that I adored, is hard. I've met the first of my new team- and I am not thrilled. Talented, able but cold, business-like. Efficient. I don't do that well.

I have slipped, here and there, into mild depression over the last few months but have always slept it off and moved on to the new day. Now, I can't.

The talons of being unsettled, of living in constant anticipation of the next thing to go wrong- has begun to wear on me. This month has been a joyous one of miracle after miracle- but has come attack after attack. My shield is dented, folding and my sword arm is tired. Putting one foot in front of the other is tiring, cumbersome. Literally and figuratively. I cry more, and easily. And that, is not my way. I will not be a victim.

Today brought more devastating setbacks in the transplant area. Phoenix will not accept me. The nurse I had initially talked to, who did the full (or what we thought was the full) initial process, missed a few steps that evidently fully disqualify me. That wasn't so much the issue today (although it was a kick in the gut), as the way she said it. She was chipper and cold at the same time. Very efficient. "We cannot even work you up. Good thing you have Denver in your back pocket". Dismissed. You are the weakest link. Byebye.

I do still have Denver, and I don't see us moving too much closer to them, as we are ok where we are- and know this is where God wants us for now. I'm reading Beth Moore's Get Out Of That Pit - and fully focused on slipping in through circumstances and people who push you in. Timing- right?

Maybe I'm just overwhelmed. Tired. In need of something going right. Just one day. Just one.
I've struggled with even posting as I like to do it once I've learned the lesson. I want to share the journey of our trip here. But, I find myself focusing on the events of what went wrong and it no longer strikes me funny. Even though we laughed all the way here. Depression is scary. And I'm trusting that God continues to hear me, and maybe someone has some directional signs from having been here before me.

Sunday, March 11, 2007

Blog Party!! Welcome to Our Blog

Welcome To Living In Grace!

We've been moving across 5 states in the last week,
but feel free to look around and see the fun things around here!

I'm just a stay at home home-schooling mom of two young teens,
who is waiting for a kidney transplant.

Posts to start with:

My Story, Part 1

My Story, Part 2

Other Bloggitey Goodness:

Read this ....

Or this ....

And there is this ...

I'd love to know you stopped by, so leave a comment
and I will be able to come and visit you as well!

It's all about meeting new friends!

Saturday, March 10, 2007

Since you've asked ...

So many of you have emailed asking why we decided to move ... right now ... with everything going on. So, here is the scoop!

To be on "the list", the transplant list - there are a ton of requirements from ability to pay, health requirements, but also locale. We need to be able to get to the center within "x" hours should I go on the cadaver list and get a donor from someone who has lost their life. Although we are trying for a living donor transplant, we are also going to get on the list for cadaver as well.

The country is divided into a bunch of UNOS areas (UNOS is the organization in charge of distributing available cadaver donor organs to hospitals). from what I understand, you can list at two hospitals as long as they are in different UNOS regions- as are Phoenix and Denver. This gives us double the chance as a donor organ- which is important in the tight availability of organs that are introduced through the system.

We have had concerns since listing with Denver that we would not be able to get there in "x" hours as needed if/when the time comes. Especially in the winter with the weather. Should I not get the last flight out, we would have to drive 12 hours in bad weather with no guarantee of arriving in time. The same with Phoenix- that is a 3 day drive, not quite "x" hours we needed.

So, we made a huge decision to move more central to both. Since I am on water restriction and inevitably don't handle heat well from a hydration standpoint, it made sense not to go too far south into the brutal heat. We landed about 4 hours north of the worst part of the heat. Still hot, but more manageable for me.

We have been researching this for a few months but I was too nervous about leaving my team of specialists for a new crowd. I'm very loyal and frankly, spoiled by them all. However, they understood our concerns and found me a great team here in our town. The Dr. just moved here to establish a practice, and there is a large population of PD Dialysis patients here in the state. Its a mecca, of sorts. Odd, but true.

I have to admit, adjusting to a larger town is hard on us right now. It's crowded, and more intense than anyplace we have lived in a very long time. We have been blessed to be able to live "out of town" for years now- at least to the point of having our space and quiet. I am happy that, other than gas prices (don't get me started), the cost of living is actually better here all around for us. And that helps in the saving-for-the-transplant-costs-part-o-things! God is good. God is faithful.

I miss my left-leaning trees already, but after having one last hoo-rah snow storm the day we were to leave, I'm ready for some sun!

This move has taken a ton out of me- emotionally and physically. I'm be catching up on all 389 posts in my bloglines over the next week or two and sharing all the hilarity that was our short 3 day almost 7 day road trip. Oh my word. It was not to be believe. I do believe Murphy rode right along with us. Every darn mile.

To all of you that have emailed or commented your concern, jokes, support, notes of Hello and How are ya-- thank you. Email will be caught up soon, I promise. But it may be a week or more. Ack, but you all have been busy!

Friday, March 09, 2007

So Take The Road Home ... la la la la ... take the long road home ...

We are here. Safe. Exhausted.

3 extra days on the road.



And a flat tire.

Oh- and the phones are dead.

So, I'll leave you with that for now, and will post a day by day journal once I can sit for more than 30 seconds.

I swear the Box Salesperson promised these were self-unpacking boxes.


Lazy. Every last one of them.