Living In Grace

It’s a Gosh Darn Miracle, I tell ya’ …. Nothing Less!

It seems like every, stinkin' day, I go to the mail to find at least one or two medical bills of some sort or another waiting for me. I can't fathom a day without that cheerful little reminder, ya know?

Up til now, we've averaged around $7-9,000/month in billables to ye old hospital and dialysis clinic of choice.  I've gotten over the sticker shock, and as someone who used to run numbers for a living, I'm fully aware of how in the red I am on my own personal Profit and Loss statement. But, as Heather Locklear wouls say, "Hey, I'm worth it!"

Recently, I received the first notice from our insurance denying payment for a claim submitted by the new dialysis clinic. A bill for - are you sitting down? - $30,000.  Thirty-thousand dollars.... for 19 days of treatment.

Take a moment, the feeling will pass.

After scraping my jaw off the floor, I picked up the phone to call the billing department at the new clinic to see ex-act-ly what the heck they were putting in me that was worth  $1578.00 a day. I'm ovviously missing out on something pretty spectacular here.

I spoke with the sweetest, most generous man from the East Coast who politely explained that I "shouldn't worry my terminally ill self over matters of finances. They can charge my insurance company anything they want. Whatever it not paid can be written off to loss at the end fo the year." He went on the explain that $15,000 was for FOUR 2ccvials of the injection I take weekly to produce red cells to fight anemia. FOUR vials, people. At those rates, it should come with someone who lives in and cleans my house in addition to injecting me twice weekly. I mean, seriously!

With that, he ended the call and hung up on me. Humph.

Back to the denial letter ... I finally talked to the insurance person, who returned my call after the twelfth message, and found out that both Medicare and my primary insurance are stating they are not primary to pay.  Up until now, Medicare has been paying first, then my private insurance paid second. And I paid the rest. Not no more, darlin. Not no more.

She insisted that I needed to call Medicare and straighten it out. It's not HER problem. So off I go to Medicare phone hell.

After sitting on hold for WAY TOO LONG, a sweet young thing gets on the line with me. I wake up, remember who I called and calmly explain the sitch. I give her dates of payment, claim number blah blah blah to prove my point QUICKLY that they have always paid first, then my private insurance takes over.

Lo and Behold .... after 40 very long minutes of holding , again, while she pours over the records - we have an answer.

It seems that I have had my transplant. Yep. I'm cured!

According to Medicare, I've had my transplant, so they are no longer primary. And don't need to pay dialysis bills. No sirree!

The thing is, the procedure comes with both a time travel feature, so you don't remember it, and a magic wand option, so there is absolutely no scarring!

Modern medicine, It's a thing of beauty.

I could go into the fact that I had to argue with Miss Sweet Young Thing that in fact, no, I haven't had a transplant --- but really, it's only details.

Instead, I need to get out some long overdue thank you cards to my transplant team for doing such an amazing job. I mean, I'm late. That's rude.

What would Emily Post say?

It’s a Gosh Darn Miracle, I tell ya’ …. Nothing Less!

It seems like every, stinkin' day, I go to the mail to find at least one or two medical bills of some sort or another waiting for me. I can't fathom a day without that cheerful little reminder, ya know?

Up til now, we've averaged around $7-9,000/month in billables to ye old hospital and dialysis clinic of choice.  I've gotten over the sticker shock, and as someone who used to run numbers for a living, I'm fully aware of how in the red I am on my own personal Profit and Loss statement. But, as Heather Locklear wouls say, "Hey, I'm worth it!"

Recently, I received the first notice from our insurance denying payment for a claim submitted by the new dialysis clinic. A bill for - are you sitting down? - $30,000.  Thirty-thousand dollars.... for 19 days of treatment.

Take a moment, the feeling will pass.

After scraping my jaw off the floor, I picked up the phone to call the billing department at the new clinic to see ex-act-ly what the heck they were putting in me that was worth  $1578.00 a day. I'm ovviously missing out on something pretty spectacular here.

I spoke with the sweetest, most generous man from the East Coast who politely explained that I "shouldn't worry my terminally ill self over matters of finances. They can charge my insurance company anything they want. Whatever it not paid can be written off to loss at the end fo the year." He went on the explain that $15,000 was for FOUR 2ccvials of the injection I take weekly to produce red cells to fight anemia. FOUR vials, people. At those rates, it should come with someone who lives in and cleans my house in addition to injecting me twice weekly. I mean, seriously!

With that, he ended the call and hung up on me. Humph.

Back to the denial letter ... I finally talked to the insurance person, who returned my call after the twelfth message, and found out that both Medicare and my primary insurance are stating they are not primary to pay.  Up until now, Medicare has been paying first, then my private insurance paid second. And I paid the rest. Not no more, darlin. Not no more.

She insisted that I needed to call Medicare and straighten it out. It's not HER problem. So off I go to Medicare phone hell.

After sitting on hold for WAY TOO LONG, a sweet young thing gets on the line with me. I wake up, remember who I called and calmly explain the sitch. I give her dates of payment, claim number blah blah blah to prove my point QUICKLY that they have always paid first, then my private insurance takes over.

Lo and Behold .... after 40 very long minutes of holding , again, while she pours over the records - we have an answer.

It seems that I have had my transplant. Yep. I'm cured!

According to Medicare, I've had my transplant, so they are no longer primary. And don't need to pay dialysis bills. No sirree!

The thing is, the procedure comes with both a time travel feature, so you don't remember it, and a magic wand option, so there is absolutely no scarring!

Modern medicine, It's a thing of beauty.

I could go into the fact that I had to argue with Miss Sweet Young Thing that in fact, no, I haven't had a transplant --- but really, it's only details.

Instead, I need to get out some long overdue thank you cards to my transplant team for doing such an amazing job. I mean, I'm late. That's rude.

What would Emily Post say?

What is Life If Not Changing …

When we made the decision to move to Arizona, we had prayed about the decision and watched each step fall into place. There were months of research into the transplant clinics here, and we carefully chose the three that we felt had the best overall success rates. When you are talking about an extra 1-2% success, and you could be that 1 or 2, it's important.

What we had assumed was that there had to be great support teams available in the same general area as the great transplant centers. After all, the care in Billings was beyond spectacular, and there is no center there. So, it was reasonable to expect that great teams abounded in the areas most needed nearby the great centers - right? Wrong.

We met with the fourth nephrology doctor on Wednesday. He was , I have to admit, the best we have seen so far. He took us in as his last patient so we had a good hour or so of his time. He was thoughtful, and explained a few things that have been confusing us, quie well and in detail. That was a pleasant change. The main thing that came out of the meeting was the one thing I've been dreading, but knew was coming. I need to go on hemodialysis.

His plan would be that we wait another month to schedule having the fistula implanted. It takes about 3 months for it to mature enough to use, in which time I would stay on peritoneal dialysis. Once the graft heals, I would do hemo for 3-4 months, long enough hopefully to bring some things in line that we cannot control with PD. At that point, hopefully, I could go back to home PD.

His reasoning for this plan of attack is reasonable, and makes total sense.

I knew in the back o my head this was a reality, but denial has been my friend. Bye friend!

This new plan of attack brings up several issues for us. First and foremost is the choice of hemodialysis units. Most likely, I'll be at the unit 3 days a week for 5 hours. There is only one unit here in town, and I'm not sure it's the unit I want to be dialyzed at. It's part of the overall medical facility that is very "cost efficient" in many of it's protocols. It's the same unit that took me off several of my protocols, without any reason, when we first moved here. That worries me on several levels. Hemo is processed through my blood. If the hemo unit is not following the best protocols, reusing filtration equipment, etc- my chances of getting sick through the process are huge.

The next nearest hemo unit to us is 4 hours away, so not an option for thrice weekly visits.

We moved here because we needed to be closer to the transplant centers. However, if transplant is 1-6 years away, it seems to make more sense to be in a place where I can get the best care while waiting- and worry about getting to the transplant center when the time is on us.

We are now considering our options as to where I should be treated. I am completely comfortable with the Billings Hemo unit. There are a couple of other options we are looking at as well, but need to take into account several things- including where John can work. With his new business, he needs to be in a commutable area to the metropolis. If we move back to Billings, he would have several cities around to work out of of, but the commute during the winter can be treacherous. As well, depending on how I respond to the hemo, I may not be able to drive myself to and from treatments.

At this point, we are talking through our options and doing alot of praying. It's put a lot of stress in the house, especially since neither of us want to uproot the kids again. However, we both agree that we need to be in the place possible place for me to get the treatment I need to live the best, the longest.

I continue to cling to the fact that God has us in the palm of His hand.

What is Life If Not Changing …

When we made the decision to move to Arizona, we had prayed about the decision and watched each step fall into place. There were months of research into the transplant clinics here, and we carefully chose the three that we felt had the best overall success rates. When you are talking about an extra 1-2% success, and you could be that 1 or 2, it's important.

What we had assumed was that there had to be great support teams available in the same general area as the great transplant centers. After all, the care in Billings was beyond spectacular, and there is no center there. So, it was reasonable to expect that great teams abounded in the areas most needed nearby the great centers - right? Wrong.

We met with the fourth nephrology doctor on Wednesday. He was , I have to admit, the best we have seen so far. He took us in as his last patient so we had a good hour or so of his time. He was thoughtful, and explained a few things that have been confusing us, quie well and in detail. That was a pleasant change. The main thing that came out of the meeting was the one thing I've been dreading, but knew was coming. I need to go on hemodialysis.

His plan would be that we wait another month to schedule having the fistula implanted. It takes about 3 months for it to mature enough to use, in which time I would stay on peritoneal dialysis. Once the graft heals, I would do hemo for 3-4 months, long enough hopefully to bring some things in line that we cannot control with PD. At that point, hopefully, I could go back to home PD.

His reasoning for this plan of attack is reasonable, and makes total sense.

I knew in the back o my head this was a reality, but denial has been my friend. Bye friend!

This new plan of attack brings up several issues for us. First and foremost is the choice of hemodialysis units. Most likely, I'll be at the unit 3 days a week for 5 hours. There is only one unit here in town, and I'm not sure it's the unit I want to be dialyzed at. It's part of the overall medical facility that is very "cost efficient" in many of it's protocols. It's the same unit that took me off several of my protocols, without any reason, when we first moved here. That worries me on several levels. Hemo is processed through my blood. If the hemo unit is not following the best protocols, reusing filtration equipment, etc- my chances of getting sick through the process are huge.

The next nearest hemo unit to us is 4 hours away, so not an option for thrice weekly visits.

We moved here because we needed to be closer to the transplant centers. However, if transplant is 1-6 years away, it seems to make more sense to be in a place where I can get the best care while waiting- and worry about getting to the transplant center when the time is on us.

We are now considering our options as to where I should be treated. I am completely comfortable with the Billings Hemo unit. There are a couple of other options we are looking at as well, but need to take into account several things- including where John can work. With his new business, he needs to be in a commutable area to the metropolis. If we move back to Billings, he would have several cities around to work out of of, but the commute during the winter can be treacherous. As well, depending on how I respond to the hemo, I may not be able to drive myself to and from treatments.

At this point, we are talking through our options and doing alot of praying. It's put a lot of stress in the house, especially since neither of us want to uproot the kids again. However, we both agree that we need to be in the place possible place for me to get the treatment I need to live the best, the longest.

I continue to cling to the fact that God has us in the palm of His hand.

Ladies and gentleman, we may have a winner ….

Casa Living in Grace had it's annual air conditioning service appointment today. We live in the hottest place on earth Arizona, which means in English that we have one evaporative cooler unit, and two a/c units on the roof. Fun for all, let me tell you.

Around 4pm, Mr. A/C Man shows up for his 2pm appointment. Yeah, people, I have no life. I can sit here all day, just waiting around. No problem. The bad part apart working on the A/C is you have to shut if off first for safety reasons. Did I mention it's 102 today. WHo's safety are we talking about here?

 Slam, slam, bang, bang -- now it's 5 o'clock and hotter than heck in the house. Did I mention how I love to stick my head in the freezer just to be able to breathe?

Mr. A/C Man finaaaaaally comes in around 5:30 and annouces, with great delight:

WOW! I haven't seen that much algae growing on a swamp cooler in a long time!

Algae? Isn't like, a spore thing that floats around in the air, hastens by all manner of turbine wind from the swamp cooler.

Ladies and gentleman, I do believe we figured out how mama got her peritonitis groove on.

Yes indeedy, I think we did.

Ladies and gentleman, we may have a winner ….

Casa Living in Grace had it's annual air conditioning service appointment today. We live in the hottest place on earth Arizona, which means in English that we have one evaporative cooler unit, and two a/c units on the roof. Fun for all, let me tell you.

Around 4pm, Mr. A/C Man shows up for his 2pm appointment. Yeah, people, I have no life. I can sit here all day, just waiting around. No problem. The bad part apart working on the A/C is you have to shut if off first for safety reasons. Did I mention it's 102 today. WHo's safety are we talking about here?

 Slam, slam, bang, bang -- now it's 5 o'clock and hotter than heck in the house. Did I mention how I love to stick my head in the freezer just to be able to breathe?

Mr. A/C Man finaaaaaally comes in around 5:30 and annouces, with great delight:

WOW! I haven't seen that much algae growing on a swamp cooler in a long time!

Algae? Isn't like, a spore thing that floats around in the air, hastens by all manner of turbine wind from the swamp cooler.

Ladies and gentleman, I do believe we figured out how mama got her peritonitis groove on.

Yes indeedy, I think we did.

Baby Steps, 1..2..3

Honestly, I don't remember uttering the words ... "Lord, I need to learn something" in the last month or so. I don't. Maybe that was the problem, I don't know.

Between near death experiences, changes in employment, battling depression, and getting some setbacks in transplant news, it's been quite a ride over the last few weeks. I have to admit that I have collapsed under the pressure of it all, to the point of being curled up in a ball crying on more than several occasions.

I have had to face the fact that this kidney thing is more serious than I thought. An odd statement to everyone, I'm sure .. but when you have lived with something your entire life this can seem like just one more thing. Another path, another turn. I've lived in the moment, and accepted that I'll get transplanted and all will be well. Honestly, there have been overwhelming moments of fear, sadness, anger, hurt - but at the end of the day, I knew it would all work out. You couldn't tell me different. Period.

Then came the Reglan. My system doesn't process food as it should. Somehow, my intestines don't "move" or something, so food sits. For a really long time. It's common in diabetics, and is called "stasis" or something close. I'm not diabetic, or close to it, but have it none the less. So, I began a regiman of one Reglan with every meal and after bedtime about 4 months ago.

About 2-3 weeks ago, I started getting depressed. Anxious. Fearful- irrationally so. It got to the point where I was afraid to sleep, I was convinced I was never going to wake up. I had horrid fantasies, while fully awake, about John and the kids dying in horrific ways. These were happening while driving the car, sitting watching TV, laying in bed. It didn't matter. I became angry, anxious, and just hard to be around.

John finally confronted me, in a completely loving way (like he didn't call me insane) and I told him what was going on. In detail. It scared both of us, as part of kidney failure can be mood/mind alterations. I seriously got to the point where I though I was going insane, was heading towards being suicidal, and considered packing my bags and leaving home to not subject the kids to watching me fall apart. It was that real.

Throughout all of this, I had periods of normalcy, lucidity where everything was fine. Then BAM~! Down the hill again.

During this time, I happened to get on IM with a friend I used to work with. She's had some health issues, and in catching up on everything she mentioned she had some issues with Reglan. She IM'd me some studies online and it all fell into place. It appears that everything I have been experiencing can be tied back to extended usage of the drug.

So, I stopped the meds. I wasn't able to get in touch with my Dr. (don't' get me started on that tangent) but thought that for the time being, I had to get off. After being off them for two days, I took a dose to test the theory. Within 40 minutes, I was in the midst of a huge panic attack, restlessness, anxiety. John spent the whole night keeping me level and grounded til it wore off. Neither of us slept.

This brought on other physical issues with my dialysis- slow drains, not dialyzing as well - so I am stuck until I hear back from the Dr. Either I risk death by peritonitis (this causes the same issues that we suspect brought it on the last time) or risk anxiety attacks, irrational fear, depression.

I've chosen to stay off the drugs, and hopefully, hopefully will hear from the Dr. tomorrow about a new drug for the rest. I finally called and raised abit of holy cane with the nurse today. I mean, it's been since Friday. Ugh.

If it's not just the drugs, and this is a new phase I'm facing, well, I'll accept that, too. It would mean that somehow, somewhere, there is a need for it to happen.

In my heart, I know that God is in control. I know that He has a plan. My heart knows that in this moment, I am where I need to be. But, my head gets in the way sometimes and I have to learn to let my heart rule out.

I have received the more encouraging, uplifting emails and comments from you guys. Throughout the madness, it has given me shimmers of hope. Hope that it's not all in my head. I've received hourly reminders of God's graciousness and eternal presence in my life.

I remember to look up, to look around. Those walls I feel closing in are simply the Hand of God wrapping around me to protect me. Nothing can touch me that He doesn't intend. Nothing.

Baby Steps, 1..2..3

Honestly, I don't remember uttering the words ... "Lord, I need to learn something" in the last month or so. I don't. Maybe that was the problem, I don't know.

Between near death experiences, changes in employment, battling depression, and getting some setbacks in transplant news, it's been quite a ride over the last few weeks. I have to admit that I have collapsed under the pressure of it all, to the point of being curled up in a ball crying on more than several occasions.

I have had to face the fact that this kidney thing is more serious than I thought. An odd statement to everyone, I'm sure .. but when you have lived with something your entire life this can seem like just one more thing. Another path, another turn. I've lived in the moment, and accepted that I'll get transplanted and all will be well. Honestly, there have been overwhelming moments of fear, sadness, anger, hurt - but at the end of the day, I knew it would all work out. You couldn't tell me different. Period.

Then came the Reglan. My system doesn't process food as it should. Somehow, my intestines don't "move" or something, so food sits. For a really long time. It's common in diabetics, and is called "stasis" or something close. I'm not diabetic, or close to it, but have it none the less. So, I began a regiman of one Reglan with every meal and after bedtime about 4 months ago.

About 2-3 weeks ago, I started getting depressed. Anxious. Fearful- irrationally so. It got to the point where I was afraid to sleep, I was convinced I was never going to wake up. I had horrid fantasies, while fully awake, about John and the kids dying in horrific ways. These were happening while driving the car, sitting watching TV, laying in bed. It didn't matter. I became angry, anxious, and just hard to be around.

John finally confronted me, in a completely loving way (like he didn't call me insane) and I told him what was going on. In detail. It scared both of us, as part of kidney failure can be mood/mind alterations. I seriously got to the point where I though I was going insane, was heading towards being suicidal, and considered packing my bags and leaving home to not subject the kids to watching me fall apart. It was that real.

Throughout all of this, I had periods of normalcy, lucidity where everything was fine. Then BAM~! Down the hill again.

During this time, I happened to get on IM with a friend I used to work with. She's had some health issues, and in catching up on everything she mentioned she had some issues with Reglan. She IM'd me some studies online and it all fell into place. It appears that everything I have been experiencing can be tied back to extended usage of the drug.

So, I stopped the meds. I wasn't able to get in touch with my Dr. (don't' get me started on that tangent) but thought that for the time being, I had to get off. After being off them for two days, I took a dose to test the theory. Within 40 minutes, I was in the midst of a huge panic attack, restlessness, anxiety. John spent the whole night keeping me level and grounded til it wore off. Neither of us slept.

This brought on other physical issues with my dialysis- slow drains, not dialyzing as well - so I am stuck until I hear back from the Dr. Either I risk death by peritonitis (this causes the same issues that we suspect brought it on the last time) or risk anxiety attacks, irrational fear, depression.

I've chosen to stay off the drugs, and hopefully, hopefully will hear from the Dr. tomorrow about a new drug for the rest. I finally called and raised abit of holy cane with the nurse today. I mean, it's been since Friday. Ugh.

If it's not just the drugs, and this is a new phase I'm facing, well, I'll accept that, too. It would mean that somehow, somewhere, there is a need for it to happen.

In my heart, I know that God is in control. I know that He has a plan. My heart knows that in this moment, I am where I need to be. But, my head gets in the way sometimes and I have to learn to let my heart rule out.

I have received the more encouraging, uplifting emails and comments from you guys. Throughout the madness, it has given me shimmers of hope. Hope that it's not all in my head. I've received hourly reminders of God's graciousness and eternal presence in my life.

I remember to look up, to look around. Those walls I feel closing in are simply the Hand of God wrapping around me to protect me. Nothing can touch me that He doesn't intend. Nothing.

When there are no easy answers …

Chronic illness is a tireless journey.  It doesn't come with easy answers or fast solutions. It's day to day, ongoing, with no end in sight. It can be tiring, frustrating. As well, when people are touched by God through your journey, it can be amazing.

I remember May 8th, 2006 quite clearly as the day I was told I was in Stage 5 kidney failure. I sat there and cried. Alone. Being so used to going to doctor's appointments, I had told John he should just stay home. It was just another appointment. However, it was a meeting that changed my life forever.

I've looked at my situation, to this point, as temporary. I'll do dialysis for awhile, find a living donor, get a transplant and live on my life for as long as the new kidney survives. I'm young enough to get a second transplant later if needed. I have a plan I can live with that includes planning my daughter's wedding and holding my grandchildren.

That plan changed Monday with this. If my PRA stays as high as it is now, I have a 1 in 10 chance of even getting transplanted. A living donor is almost out of the question, and the average wait for a cavader donor that would match me is over 6 years.  My reaction has been to research and ask alot of questions of both Porter and Mayo transplant units. Neither of them have been overly optimistic. They are playing down my chances of getting through this with a new kidney. Since it can take 4 months for PRA to come down (if it's going to) due to an elevation from infection, we have to wait and see. Four months, before we have an answer.

I'm now fully realizing that, without divine intervention, this can cost me my life. Six years is a long time to be stable on dialysis. Statistics show that one patient dies every ninety minutes waiting for transplant. And that's in the 80% that are in the optimal PRA ranges.

Reality is settling in. My mind and heart are under attack. Depression has started to try and get a foothold in my head, partly due to an unknown side effect to a medicine I've been on and just stopped.

I'm trying so hard to hand this over. To believe, as I have to this point, that it's all under control and pre-ordained. But, I find myself slipping down a slope that I cannot grasp hold of. I cannot stop my decline.

When there are no easy answers …

Chronic illness is a tireless journey.  It doesn't come with easy answers or fast solutions. It's day to day, ongoing, with no end in sight. It can be tiring, frustrating. As well, when people are touched by God through your journey, it can be amazing.

I remember May 8th, 2006 quite clearly as the day I was told I was in Stage 5 kidney failure. I sat there and cried. Alone. Being so used to going to doctor's appointments, I had told John he should just stay home. It was just another appointment. However, it was a meeting that changed my life forever.

I've looked at my situation, to this point, as temporary. I'll do dialysis for awhile, find a living donor, get a transplant and live on my life for as long as the new kidney survives. I'm young enough to get a second transplant later if needed. I have a plan I can live with that includes planning my daughter's wedding and holding my grandchildren.

That plan changed Monday with this. If my PRA stays as high as it is now, I have a 1 in 10 chance of even getting transplanted. A living donor is almost out of the question, and the average wait for a cavader donor that would match me is over 6 years.  My reaction has been to research and ask alot of questions of both Porter and Mayo transplant units. Neither of them have been overly optimistic. They are playing down my chances of getting through this with a new kidney. Since it can take 4 months for PRA to come down (if it's going to) due to an elevation from infection, we have to wait and see. Four months, before we have an answer.

I'm now fully realizing that, without divine intervention, this can cost me my life. Six years is a long time to be stable on dialysis. Statistics show that one patient dies every ninety minutes waiting for transplant. And that's in the 80% that are in the optimal PRA ranges.

Reality is settling in. My mind and heart are under attack. Depression has started to try and get a foothold in my head, partly due to an unknown side effect to a medicine I've been on and just stopped.

I'm trying so hard to hand this over. To believe, as I have to this point, that it's all under control and pre-ordained. But, I find myself slipping down a slope that I cannot grasp hold of. I cannot stop my decline.