The Dozen

Next Thursday will be my 12 year transplant anniversary.  According to my cardio doc, I've managed to be two years over the average with my only issues being a bout of CMV and a rejection issue about 4 years ago.  At this point, most transplant patients have had a major rejection or dealt with the side effects of the numerous drugs we take...so far, I've just dealt with the one (in his opinion) major rejection issue.

I recently went to the cardio doc for my 6 month check up.  He wasn't pleased that I self elected to drop my prednisone down in half, however, I was not getting more than 3 hours of sleep even with sleep medication on it.  Now, I'm able to get at least 5-6 hours of solid sleep nearly every night.  All my blood work came back in normal ranges but he does want to run an echo to make sure I haven't started some rejection issues with my self diagnosis of meds.

His one recommendation, however, was that I find a way to reduce my stress level.  Now, in the current state of education in Oklahoma, frankly that is impossible.  If it isn't the way we are treated, the poor pay we receive, it is the lack of interest by parents and students.  Not all, mind you, but I spend over 90% of my time with the 474 students on my case load dealing with students and/or parents who don't care or can't handle their children.  If you can't tell, I'm really disappointed in the state of education in Oklahoma.  I'm even disappointed in my own district.

There are a great many outstanding educators in this state.  But who can blame them for wanting to leave to go to states where they are appreciated and payed a reasonable salary.  Where they don't have to work two jobs to feed their kids or pay their bills.  For the past two years we have gathered together and voiced our concerns to legislators who don't care, yet people in this state keep electing the same non-listeners.

Doc suggested that I stop working, but I have bills to pay and early retirement will only cover my insurance and pharmacy bill, which I obviously still need to stay alive.  So, in all honesty, I have been looking out of state and may have a solution on the horizon.  I just need to make sure that the pay will be worth leaving Oklahoma 5 years before I can retire.  However, if I stay here another 5 years it may kill me...literally.  While I'm not one to walk away from a fight, for the sake of living a few years longer it is something I seriously have to consider.

I recently read through my journals the two years prior to the transplant and the two years after.  It was amazing how the Body of Christ worked through so many people during that time.  From conversations, to acts of kindness, to friends hanging out at the hospital multiple times, to friends' children and students sending me pictures, cards, or calling.  Then, to learning that one of my favorite (I know we're not supposed to have any....but Allen was special) students who suffered a trauma gave his organs simply because of hearing what someone had done for me the week before.  I was touched and blessed every step of the way.

Four years ago when I had the rejection issue, I was blessed again by family and staff at SIHS as we battled to get back on track.  I truly didn't think it was a big deal, but according to the doc it was really serious.  I've always been one who hated to go to the doctor, so that little event taught me to listen to my body a little closer.  My recent bouts with bone fractures in my back and bone issues in my ankles are telling me that I need to listen better and not wait till it is almost too late to fix these things.

Recently, my body has been telling me it is tired.  The pace of my job is extremely fast, and as I said, deals with difficult situations on a constant basis.  It may be time to move to something smaller with people who are serious about their future.  I'm going to have to decide in the next few weeks what next year is going to be like.  I'd like to ask one more thing from all those who have supported me in the past....pray that I make the right decision for my health and life.  I'll keep you updated.

Giving Thanks

This time last year I was wondering about my future.  I started having some back pain in late October, then came down with a really bad cold in early November that resulted in some intense coughing.  That made the back pain worse.  I eventually got over the cold, but not the back pain.


After an MRI and several x-rays, as well as visits to primary care and back/hip doctors, I was told there wasn't much that could be done.  My medicine that I have to take to keep my transplanted heart was causing some severe reduction in bone mass, and my spine seemed to be its main target.


I had been walking with a cane since early November, but the pain was just getting worse and worse.  In January, I finally got connected with a pain specialist and went in for an injection in my back.  Now, I have a high tolerance for pain - which has been confirmed by the pain specialist.  But the simple act of just getting in and out of bed would cause me to scream aloud, and I had to have the cane available to be able to do it.


I was also have to do some thinking about whether I could work or not.  The typical life expectancy of a transplant patient is 7-10 years...I will be at 12 this February.  After 10 years, your percentages start going down pretty fast.  Did I want to try to continue to work, in pain, for my remaining years?  I started looking into retirement but since I do not have enough years in, my income would only cover my insurance and my pharmacy bill....nothing to live on.  I checked out disability but I had to stop working first before anyone would even talk to me about it.  And even if I did get it, chances are it still wouldn't be enough to live off of.


The pain doc suggested trying a procedure that would put basically a liquid cement in the worse back fracture (I have 3) and see if it would shore it up and help with the pain.  To do so meant that would "jackhammer" into the good part of the vertebrae, get to the fracture area and fill it, then fill in where they had to "jackhammer" in.  However, lifting (which I couldn't do anyway) anything was going to become an issue from this point on.


Fortunately, the procedure worked well enough to ease the pain to a manageable level.  Surprisingly, up to this date, I haven't had to have it done again although it is typical for it to have to be done more than once.  Recently, I went back to the pain specialist and will probably have another MRI ran to see if one of the other 2 fractures is developing a similar problem.  If this has to be done, hopefully it can before the end of the year as this is an expensive procedure and my insurance deductible is paid!  This year, it has started to affect my ankles.  I've been hobbling around for about 6 weeks now and despite x-rays and a possible MRI, nothing can really be fixed. 


Gratefully, my parents have been here to help.  I can't lift my mattress to change sheets, so they come over and help with that.  I can't push a vacuum, so they help with that.  For a while, emptying the dishwasher or carrying laundry to the washer was an issue, but that has gotten better.  Now they are beginning to have pain and aches of their own.  Robert and Susan have moved to Arkansas and aren't as close by to help although I know they would help in any way they could, if needed.  My cardio doc was surprised when he saw me in August that we weren't facing cardio failure as he had a feeling that due to the pain and some other indicators that we'd be looking at that as well.  So far, we're not facing that yet.


And as far as working, there are a couple of factors there.  Oklahoma doesn't support education very well at all, and promises continue to fall through.  States nearby are paying 10K to 20K more to teachers, and people are leaving in droves and will continue to do so.  I'm 5 years away from retiring here, but I don't know if I can hold out physically or afford to stay.  Yet, my parents and my doctors are here and I'd like to keep them both around for a while.  So, some decisions are going to have to be made along those lines soon.  Do I want to continue to work, and if so, do I want to do it in Oklahoma?  Is it worth making a change to another state?  There are some ideals with my current district that I don't totally agree with, so do I stay in Oklahoma and look for another position - because let's face it, there are going to be openings due to teachers moving to greener pastures.


So, you are probably wondering why the title of this blog was "Giving Thanks" at this point.  Well, I'm giving thanks because I'm still on this earth.  I'm giving thanks because while I don't always feel great I'm still able to get up and around...I often see people who can't.  I'm giving thanks because my parents are willing to help out as much as they can when they are able, and that I still have them with me.  I'm giving thanks because I have a brother and sister-in-law who do all they can when they can.  I'm giving thanks because almost 12 years ago I wasn't sure I'd see another Thanksgiving or Christmas ever again.


With all the craziness in this world right now, with all the challenges of the past 12 months, it just felt like the right time to stop and give thanks.  I hope you'll take a moment to do so as well.

11 Years - The Times They Are A Changin'

Eleven years ago on the 23rd I was given a second chance at life by the family of Tiffany Fleethart Mashore, who had made the courageous decision to be an organ donor.  I've always said these are "bonus years" for me.  I've seen my parents celebrate their 50th Wedding Anniversary and will soon see my father celebrate his 80th birthday.  I've seen children of friends and family graduate from high school and college and start their own lives.  I've seen students that I've had in the past become teachers themselves.

But this past year has been a difficult one.  My 60 pills a day are catching up with me.  The prednisone that I have to take to keep from going into rejection (had a serious issue about 4 years ago) has its own side effects, one of which is the thinning of your bones.  This summer, I had a bone density test and was told there was significant reduction from the last one about 4 years ago.  Then in October, I began to develop some back issues that have turned out to be pretty significant.  My lumbar vertebra, which should be straight across the top, look like your molars.  These "dips" cause my disc's the slip which causes some pain.  In addition, I have spinal fractures which are causing the majority of my pain.

There have been times where I haven't been able to work, and I hate leaving my fellow counselors short handed.  I feel that I have a pretty good pain tolerance but when it takes 20 minutes to put on your socks and you scream when you try to get out of bed, somethings not right.  I've had an MRI and saw both a hip and back specialist who say there is no surgery that will help.  I've gotten a pain doctor who gave me a lumbar ejection which did give some relief, but I still am in pain at a level of 4-6 nearly everyday.

In addition, my cardiologist said my heart was in good shape but that my chances of surviving to year 20 drop from the 50% range I am in now to 25%, and the following 5 years after that to about 10%.  So, while the heart is doing well, all the drugs that keep me alive have significant impact on my future.

So, the question becomes, what to do?  While I'm not retirement age or eligible yet, do I go ahead and retire and try to get disability?  There is no way I can live on retirement itself....it barely pays for my insurance and pharmacy bill, let alone rent, food, and bills.  I'm not sure that even with disability, that is going to be possible.

I've got one last shot for pain relief coming up on the 29th....the pain doc is going to try to insert some "liquid cement" in these fractures to see if we can stabilize them enough to give me some relief.  The aqua therapy that I've done for the month has helped with balance and some strength, but that has been about it.

I'm somewhat discouraged, in pain, depending on my family to help with basic things like house cleaning and grocery shopping, and feeling guilty that I'm not able to help my parents as I should...rather at their age they are having to continue to help me.  I've got some major life decisions to make soon, and I'd appreciate your prayers as I go through the process.  I'm really hoping this procedure will be successful so that I can delay some of this for a couple of years, but I know it is coming.

As I said in the beginning of this post, I'm grateful for the extra time I've had, and I hope I've done something with it to make a difference.  I would just like to have a little bit more time, if possible...and preferably pain free.