Living In Grace

Breathtaking and Inspiring

Being on the dialysis machine 12 hours a night gives us alot of time watching DVR episodes of some of our favorite shows at night, just me and the kids. It's fun time for all of us; we cuddle up on the bed (they're 13 and 14, so cuddling is a treasure) and catch up on our favorite shows.

Every once in a while, we'll rent a movie we haven't seen. Now that the kids are "adults", at least in the eyes of the movie theater managers, we tend to not go to the theater that much anymore. Usually, it's only for a movie that truly requires the big screen for the full effect.

Last night, we rented Bridge to Terabithia. Becasue we have the Rewards program at the store, we were entitled to a free movie of non-New Release status! Yippee! A two-fer. So, I send Kati back in to pick out something. She loves the independence :)

She picked out a movie I've not heard of. It's called I Am David. She chose it because it had Jim Cavaziel in it, from Passion of the Christ and Frequency (another great movie) fame. She thinks he's cute.

I have to tell you that you must see this movie.

A request: Don't google it, or read any of the reviews. It gives too much away. I looked and looked at all the sites, to give you an idea of the content and they all give too much of the story and the ending away. This is a movie that must be seen cold turkey with no advance knowledge.  You need to simply allow yourself to be swept up in this boy's journey towards hope and freedom.

Disclaimer: It's rated PG due to a couple of scenes in a Forced Labor Camp at the end of World War II. However, I would have been comfortable letting the kids watch it even if they were abit younger than they are now.  Although they are very aware of the Holocaust, and the events of WWII, it may cause some discussion of certain events in children not as familiar.  I'm a firm believer in learning from history.

There are many beautiful, yet meaningful lessons to be learned through this boys journey.  I believe you and your family will be changed by it's message.

Breathtaking and Inspiring

Being on the dialysis machine 12 hours a night gives us alot of time watching DVR episodes of some of our favorite shows at night, just me and the kids. It's fun time for all of us; we cuddle up on the bed (they're 13 and 14, so cuddling is a treasure) and catch up on our favorite shows.

Every once in a while, we'll rent a movie we haven't seen. Now that the kids are "adults", at least in the eyes of the movie theater managers, we tend to not go to the theater that much anymore. Usually, it's only for a movie that truly requires the big screen for the full effect.

Last night, we rented Bridge to Terabithia. Becasue we have the Rewards program at the store, we were entitled to a free movie of non-New Release status! Yippee! A two-fer. So, I send Kati back in to pick out something. She loves the independence :)

She picked out a movie I've not heard of. It's called I Am David. She chose it because it had Jim Cavaziel in it, from Passion of the Christ and Frequency (another great movie) fame. She thinks he's cute.

I have to tell you that you must see this movie.

A request: Don't google it, or read any of the reviews. It gives too much away. I looked and looked at all the sites, to give you an idea of the content and they all give too much of the story and the ending away. This is a movie that must be seen cold turkey with no advance knowledge.  You need to simply allow yourself to be swept up in this boy's journey towards hope and freedom.

Disclaimer: It's rated PG due to a couple of scenes in a Forced Labor Camp at the end of World War II. However, I would have been comfortable letting the kids watch it even if they were abit younger than they are now.  Although they are very aware of the Holocaust, and the events of WWII, it may cause some discussion of certain events in children not as familiar.  I'm a firm believer in learning from history.

There are many beautiful, yet meaningful lessons to be learned through this boys journey.  I believe you and your family will be changed by it's message.

Where Has The Time Gone?

First off, thanks to everyone for their prayers and support. In talking to the doctor, there are a few issues we are going to work on.

First is the anemia. We're upping the Epo injections to 4x a week, same strength from 2x a week. We can't seem to get the counts up at this rate. It's kindof a pain, because I'm just tired all the time. Like someone unplugged me. We should kno in a week or two if this is working :) Yeah!

Second thing is the blood pressure issue. They are taking me off of all diuretics, which does have me worried. The last time we tried this, I blew up like a balloon (if you've had pre-enclampsia when pregnant, it's like that) and ended up with gout in both legs and feet. The best part was I was on a business trip in California, and was flying the day after. I had to suck it up and do the wheelchair route all the way home, connections and all. Fortunately, one of my co-workers was traveling the same route through the first two legs, and stayed with me, laughing all the way!

Next, on Thursday, we will do an adequacy test. This will determine two things- if I'm dialyzing well enough, and what residual function I still have left. Our last three tests have shown 14%, 7.5% then back up t o 13.5%. I'm nervous, but based on things I'm seeing (like how much I still "ahem" pee), I feel that we are still upwards of 10%. I'll let ya know.

Lastly, we will be making some medication adjustments to help out wiht some other areas I can maintain on my own anymore. Things that can stop calcification in my blood vessels from happening, silly stuff like that.

Because of the issues we had with medical care the last three months, things have just gotten off track. But, I feel confident that with this team on board, we ware finally getting back to where we need to be.

And that, is worth celebrating!

Speaking of celebrating, we spent the day yesterday doing fun things for John's birthday. I can't believe I'm married to a 48 year old. I mean, I didn't get older. What the heck?

We took him to his fav diner - Mr. D's Route 66 Diner.

Yep, it's on Route 66. It's even recommended by Oprah now! They make a homemade carmel root beer that is to die for, and I don't like root beer. We all shared a yummy pizza, and then headed home.

Kati made a beautiful strawberry ckae, and decortaed cupcakes to sit on top for decoration. Unfortunately, our digital camera tried to do some extreme sports and didn't surviveit's vault off the kitchen counter onto the tile floor. Sad. It was good camera. Lots of potential. So now, we are looking at our options. Sigh.

I'm going to be starting catch up on things in the Bloggy world here in the next few days. I've just not been up to it, but can't wait to see how everyone is doing!!

Where Has The Time Gone?

First off, thanks to everyone for their prayers and support. In talking to the doctor, there are a few issues we are going to work on.

First is the anemia. We're upping the Epo injections to 4x a week, same strength from 2x a week. We can't seem to get the counts up at this rate. It's kindof a pain, because I'm just tired all the time. Like someone unplugged me. We should kno in a week or two if this is working :) Yeah!

Second thing is the blood pressure issue. They are taking me off of all diuretics, which does have me worried. The last time we tried this, I blew up like a balloon (if you've had pre-enclampsia when pregnant, it's like that) and ended up with gout in both legs and feet. The best part was I was on a business trip in California, and was flying the day after. I had to suck it up and do the wheelchair route all the way home, connections and all. Fortunately, one of my co-workers was traveling the same route through the first two legs, and stayed with me, laughing all the way!

Next, on Thursday, we will do an adequacy test. This will determine two things- if I'm dialyzing well enough, and what residual function I still have left. Our last three tests have shown 14%, 7.5% then back up t o 13.5%. I'm nervous, but based on things I'm seeing (like how much I still "ahem" pee), I feel that we are still upwards of 10%. I'll let ya know.

Lastly, we will be making some medication adjustments to help out wiht some other areas I can maintain on my own anymore. Things that can stop calcification in my blood vessels from happening, silly stuff like that.

Because of the issues we had with medical care the last three months, things have just gotten off track. But, I feel confident that with this team on board, we ware finally getting back to where we need to be.

And that, is worth celebrating!

Speaking of celebrating, we spent the day yesterday doing fun things for John's birthday. I can't believe I'm married to a 48 year old. I mean, I didn't get older. What the heck?

We took him to his fav diner - Mr. D's Route 66 Diner.

Yep, it's on Route 66. It's even recommended by Oprah now! They make a homemade carmel root beer that is to die for, and I don't like root beer. We all shared a yummy pizza, and then headed home.

Kati made a beautiful strawberry ckae, and decortaed cupcakes to sit on top for decoration. Unfortunately, our digital camera tried to do some extreme sports and didn't surviveit's vault off the kitchen counter onto the tile floor. Sad. It was good camera. Lots of potential. So now, we are looking at our options. Sigh.

I'm going to be starting catch up on things in the Bloggy world here in the next few days. I've just not been up to it, but can't wait to see how everyone is doing!!

Quick Update

I'll be talking to the doctor tomorrow to find out why I'm having more and more episodes of low blood pressure.

They tend to happen late afternoon or evening, and have fallen as low as 97/52. The solution is to eat a dill pickle (we've taken to keeping a joar in the cooler in the car) which seems to get things moving up again. Needless to say, I used to rave pickles. Now? Not so much. LOL

I'm spending alot of time relaxing either in the pool on a raft, or in bed since we have no "trigger" that seems to set these off. It's like hero to zero in no time flat when it happens.

I don't want heart damage on top of everything else. Blech.

Thanks for your prayers everyone!

Quick Update

I'll be talking to the doctor tomorrow to find out why I'm having more and more episodes of low blood pressure.

They tend to happen late afternoon or evening, and have fallen as low as 97/52. The solution is to eat a dill pickle (we've taken to keeping a joar in the cooler in the car) which seems to get things moving up again. Needless to say, I used to rave pickles. Now? Not so much. LOL

I'm spending alot of time relaxing either in the pool on a raft, or in bed since we have no "trigger" that seems to set these off. It's like hero to zero in no time flat when it happens.

I don't want heart damage on top of everything else. Blech.

Thanks for your prayers everyone!

Grab a hanky …. its’ all good!

So many of you were touched by this, so hop on over to Simple and Southern for an update!

Grab a hanky …. its’ all good!

So many of you were touched by this, so hop on over to Simple and Southern for an update!

Transplant Updates

Today has been a day of emotions. Up and down, down and up.

I finally got through to Porter Transplant to check on my monthly PRA levels. Understanding that it can take months for high PRA levels to come down after peritonitis, we have been hopeful and praying that we would see at least a slight decrease this month. Some hope towards the end of the tunnel. I've been moving through this last month completely confident that we would, in fact , see some results. So confident, that I've waited two weeks to call and get the results.

Unfortunately, results are not good. I've actually gone from 80 to 96 on a scale of 1-100. So, the bottom line is that I will react negatively to 96% of the population in a transplant situation. Porter defined it as the transplant equivalent to "inoperable". It also means that I will now have to match 5 of 6 of the markers they test for in consideration of a matching transplant. Normally, they will go ahead with half that.

I can barely get out the words ... this is a setback. A huge setback.

Because of the increase in PRA this close to the last one, it means that this high level is not caused by the peritonitis. It's my natural blood chemistry. A family match is the best way to go, as their chemistry may more closely resemble mine. I have no family that can donate. My mom is way over the age limit, and has medical issues that preclude her- and my only other sibling / family member is a half-sister I have not seen/talked to since 1982.

Porter has told me, very gently but pragmatically, to start looking for another unit that does "High PRA Rescue" - a workable, but not very common protocol that may help. They don't do that particular protocol. Without it, I'm looking at trying to make dialysis work for 6-10 years in hopes of getting a suitable match.

Suffice to say, I do know that none of the transplant units in our immediate area (Utah, Arizona, Colorado, Nevada) do it. The University of Maryland is the one that started the protocol, so I plan to call them tomorrow and see who else is currently offering the protocol, hopefully on this side of the US.

So we now have alot of research to do, alot of prayer, and because of the geographical requirements of the units- the potential for a huge move to someplace we are totally and completely unfamiliar with to pursue treatment.

To pursue life.

Transplant Updates

Today has been a day of emotions. Up and down, down and up.

I finally got through to Porter Transplant to check on my monthly PRA levels. Understanding that it can take months for high PRA levels to come down after peritonitis, we have been hopeful and praying that we would see at least a slight decrease this month. Some hope towards the end of the tunnel. I've been moving through this last month completely confident that we would, in fact , see some results. So confident, that I've waited two weeks to call and get the results.

Unfortunately, results are not good. I've actually gone from 80 to 96 on a scale of 1-100. So, the bottom line is that I will react negatively to 96% of the population in a transplant situation. Porter defined it as the transplant equivalent to "inoperable". It also means that I will now have to match 5 of 6 of the markers they test for in consideration of a matching transplant. Normally, they will go ahead with half that.

I can barely get out the words ... this is a setback. A huge setback.

Because of the increase in PRA this close to the last one, it means that this high level is not caused by the peritonitis. It's my natural blood chemistry. A family match is the best way to go, as their chemistry may more closely resemble mine. I have no family that can donate. My mom is way over the age limit, and has medical issues that preclude her- and my only other sibling / family member is a half-sister I have not seen/talked to since 1982.

Porter has told me, very gently but pragmatically, to start looking for another unit that does "High PRA Rescue" - a workable, but not very common protocol that may help. They don't do that particular protocol. Without it, I'm looking at trying to make dialysis work for 6-10 years in hopes of getting a suitable match.

Suffice to say, I do know that none of the transplant units in our immediate area (Utah, Arizona, Colorado, Nevada) do it. The University of Maryland is the one that started the protocol, so I plan to call them tomorrow and see who else is currently offering the protocol, hopefully on this side of the US.

So we now have alot of research to do, alot of prayer, and because of the geographical requirements of the units- the potential for a huge move to someplace we are totally and completely unfamiliar with to pursue treatment.

To pursue life.