An Update - January 2024

 Life has happened and time has gotten away from me.  My last post was the evening before my 13th anniversary, and now I am approaching my 19th.

My move to Arkansas has been the best decision I have made in a while.  I'm enjoying serving as the Headmaster for Haas Hall Academy at the Jones Center in Springdale.  In the 7 years that we've been open, we have progressed to ranking in the top 4 high schools in the State, and in fact in one ranking were listed as number 1.  All of this is due to the efforts of the teaching staff and the scholars.

Personally, my health has been fantastic.  I'm approaching my 19th anniversary and all has been great.  My only issues are due to bone density loss which is causing pain in joints, spinal area, feet.  This is all caused by the anti-rejection meds.  I did get a light case of Covid-19 but was given the antibodies and recovered quickly.  I get boosted as often as my doctors allow and continue to monitor numbers of cases in the area.

As far as mental health, I rescued a dog in June of 2018 and he has been the best thing for that!  He is totally spoiled and loved by all and is a great resource to help me relax and companionship.  I've also recently got back into crafting, mainly Cricut materials, and while it is an expensive hobby it does make my mind think in different ways.

My parents are now in their mid to upper 80's and their health is declining.  That is the only thing that makes being over this way hard.  I stay in constant contact with them and have now started picking them up and bringing them over for holidays and things so they don't have to drive.  Mom had a bad case of Covid and hasn't really recovered from it.  Dad caught it as well but like me, caught it early and got the antibodies so had a quick recovery.  Mom didn't...she was hospitalized for a while and has had some long Covid issues.  Time is starting to wind down and I'm trying to do all I can to see them as often as possible.

My brother and sister-in-law are over here and help when needed.  They took me on a conference trip to Hawaii last February where I had a great time.  They also got me a NASCAR ride package that will be happening this Spring Break in Vegas where I'll get to drive a racecar a couple of time around the track.  Not sure if that will meet the Doctor's approval but they've started telling me to do what I want since I've made it this far.

If anyone is still following, thank you for doing so.  I'm sorry it has been so long but I've had several new computers and finally found the link back to this.  I'll try to do a better job in the future.

13 Is Not An Unlucky Number

As I sit here tonight listening to the rain hit the roof, I can't help but remember what happened 13 years ago because while the nights are similar, the locations are much different, 


I walked into my school today without running out of breath and worked a full day.  That day 13 years ago, I had stopped a couple of times as I walked in, sat down at my desk, and started counting the number of days till Spring Break.  I could tell I was degenerating rapidly, and I knew that working till the middle of March was going to be very difficult to do.  It had been a hard couple of weeks.  I'd lost a cousin to cancer and a friend at work had her daughter murdered while working by her ex-husband.  I can't even begin to tell you the emotions I felt as I sat in their services.  Would this be happening again to my family and friends soon?  Had I planned (because those of you that really know me know I do this) everything well enough so my family wouldn't have to?


As I was looking at the calendar, my cell phone rang.  They had a possible match in OKC but needed me to give them some additional vials of blood to test to make sure it was the right match.  Never mind that I had given 6 vials earlier that week...they'd been sent all over the US because my doctors were seeing the same thing I was.  And of course, this was the busiest time of year for work and family.


But, family was reached and to the hospital I went.  Later in the afternoon it became obvious that this was going to work, but then Oklahoma weather hit.  First it was the rain, then the ice, then the snow, then back to rain.  The plan to Lifeflight to OKC went out the window.  As the evening wore on and other transplant teams were having difficulty getting to OKC, most of my family and friends went home to rest leaving me with my thoughts.


I'd made peace with a great many things so I was ready to accept whatever outcome developed, but that still didn't change the uncertainty of knowing this could possibly be your last night in this world.  I thought about memories and people I hadn't thought of in years and while I was told I needed to rest, there was no sleeping.  I wanted to have every moment while I could.


When they came in and told me they'd gone to harvest, my family and friends once again showed up.  The nurses argued about where they should all wait when they came to get me, and all I could think of was "hey...I'm the one here that may live or die...get me to the operating room and figure all this out later!"


Obviously, the transplant worked and after many procedures, doctor visits, and thousand upon thousand of pills, I'm fortunate enough to still be here.  There have been times when I wondered if I was going to be around much longer...like about this time last year.  And my cardiologist basically told me the same thing...change your stress or you won't be around in a couple of years.


So, I did.  I accepted a position in Arkansas working with scholars who want to learn and come to school and with much less numbers.  I'm as busy as I was before, but my stress level is so much less.  It was sad to leave friends who have supported me for @ 15 years of this (the before and after) but we stay in touch.  And I've made fantastic new friends here that are as supportive and caring. 


And I still know there are no guarantees on this.  I'm about 3 years past the average right now.  All I asked in the beginning was to be at my parents 50th wedding anniversary and see my family/friends children graduate high school.  The folks are soon approaching 60 and the kids are almost there.  Whatever time I'm granted, and I've always considered this bonus time, I want to use to the best of my ability.  And I still want to be there for my family, and fortunately Dr. S understands that.


So, as the rain falls and the memories flood, I find myself once again grateful to a family who on this day grieves for their loss.  I hope Tiffani's family takes comfort in knowing that others, like myself, have been given a second opportunity based on her generosity.  I'm trying to honor the life that was lost by living mine to the fullest and with purpose.  I hope she's proud.

It's Been Awhile!

Sometimes time just gets away from you, and that is exactly what has happened to me.  My last post was about my 12 year transplant anniversary, and here it is 11 months later and so much has changed!


When I saw Dr. E last Spring, he warned me that something needed to change or I would not be around much longer.  My stress level was way over where it needed to be, my body was developing issues from the anti-rejection meds, and I was just generally unhappy.  My case load of kids was approaching almost 500, the State of Oklahoma was not valuing the education profession, and despite working for a great district I just could not seem to get anywhere.


For several years, Susan's brother had tried to get me to come to Arkansas and work in his public Charter School.  I'd gone over during the summer and helped out a couple of weeks a summer so I was familiar with his philosophy and the success he was having.  This year they were going to open two new campus sites in Rogers and Springdale, and he offered me a position as a counselor.  After reflecting on my health and having strong consideration over leaving my 80'ish folks alone since Robert and Susan had moved to Fayetteville, I made the decision to take the job.  Boy, am I glad I did!


I decided to retire from Oklahoma 5 years early because I didn't think I'd live that long if I stayed.  I moved to Springdale in June and started working at Haas Hall Academy shortly after.  A couple of weeks before school was to start, Marty asked me to also serve as the Headmaster for the Springdale campus as well as do the counseling for grades 7-10.  Since I only had @ 170 kids to start, I felt I could handle it. 


I have been so happy to be here.  I work with kids who want to come to school...they may not be academically at the level we'd like them to be but they show up every day.  The parents don't call to cuss me out, they call to thank me for creating a safe environment for their scholar.  The staff, who I had not input in selecting, have joined together to create a family.  Even dealing with new construction and a public building, it has been so much less stressful than last year that I've dropped weight and all my doc appointments have been so much better than last year that the docs are thrilled.


My only concern has and will always be the effect of all this on my parents.  Mom had a knee replacement surgery this fall that was difficult for her at 80, and Dad has had some issues resulting in quick ambulance runs.  But, Robert has stepped up and helped a great deal as has several of my male cousins, Jimmy, Rodney, and Donnie.  Marty has known that I'll drop everything to go to my parents if needed and gratefully, he supports me in this.  I try to see them at least every other week and call several times a week.  If I could get them up on technology, we'd Skype or Facetime but they aren't quite ready for that.


So, it has been a year of change with year 13 rapidly approaching.  I've been blessed to now be 3 years past the average and hopefully with these changes I can go another 5 to 7 before any further issues develop.  At least I'll know those last years will be in a happier place.  I miss my friends and family in Oklahoma, but I'm grateful that Marty believed in me and saw past the "you know she's had a heart transplant" stigma that seemed to follow me in BA.  I plan on taking full advantage of the opportunity and continue to be as happy as I am right now.

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.

Giving Thanks

As the holiday season approaches, and the start of my school year has been busy and challenging, I'm taking stock of all I should be thankful for.  My earliest memories of Thanksgiving always involved family, so that is the first thing I'm thankful for.

My parents have, and continue, to provide for my every need.  From my earliest memories of walking hand in hand with my father, to recently being in the kitchen learning my mother's "tricks" for her dressing and pumpkin pies, I've grown to cherish every minute with them.  There was a time when we weren't sure we'd get to have our cherished holidays together anymore, but God had different plans.  Now, we value every call, every meal, and every conversation we have been granted.  My brother and I have been given a great gift in our parents and I hope they know how much we love them.

Thanksgiving memories always include thinking of my grandparents, Lawrence and Goldie Gore.  I was always close to them, namely because I was the only grandchild for 7 years (yes, I was spoiled by that side of the family...I'll gladly admit it) and the apple of their eyes.  My grandmother would have a new dress made for me and my grandfather gave me my love of music and the outdoors.  When we moved back to Oklahoma in 1972, I would spend weekends at their house.  My grandmother taught me how to cook and can food, and my grandfather taught me how to fish.  I was really good at catching "wood bass" which was his term for the tree branches the lures often found their way to.  We always spent Thanksgiving at their house, with 1978 being the last time.  My grandfather went to his Heavenly home the Monday after Thanksgiving in 1978.  After that, we had our gatherings at our house.  The holidays were a little less bright after that.  But now they are spent remembering those no longer with us and missing aunts/uncles/cousins who now have families of their own to make their own memories with.

Ray and Avis Bendure had over 30 grandchildren to spread their love among.  Most of my younger years were spent with them in the summer as we pipe lined, but we would spend Christmas Eve with the entire family after hastily making fast trips from Illinois to arrive on time.  My grandfather had a nickname for me, JJ, and we still put up the small Christmas ornament he bought me nearly 50 years ago...which has miraculously made it through many moves.  My grandmother loved to get me into a "debate" (really, she just loved to get me riled up and argue with her) until my parents had to tell her to stop.  Between Grandpa Gore and Grandma Avis, I inherited their bright blue eyes.  My grandfather had less than an 8th grade education and my grandmother had a less than ideal childhood, but they found their way to each other and created a large family who have gone on to do successful things.

Last but not least, I have been granted a fantastic brother and sister-in-law.  There are 7 years difference between Robert and I, and that was a lot of fun during my teenage years, but we both know that if we need something all we have to do is call the other.  In fact, we often have the ability to just know when we need to speak to each other.  Robert supported me during the transplant and offered to stand by my decision whichever way it went.  He comes when I need something that I just can't do.  He's helped me fulfill some of my dreams by taking me to concerts and shows that I wouldn't be able to attend otherwise.  Susan, has the same feelings toward family as we do.  The care she showed for her father while he was ill and now as she checks on her mother and helps her brother with his school proves that Robert made the perfect mate choice.

Here's hoping that all of my friends and family take a moment to discover what they are thankful for during this weekend.  It is so easy to get wrapped up in the busyness of the holiday rather than to slow down and just say thanks.  It is good to stop the madness of Black Friday and jumping to the next holiday and take stock of what we should be grateful for....family, friends, a wonderful country, the men and women who constantly defend it, and everything that we have.  As the song says, "give thanks with a grateful heart".

Summer 2015

As school was ending this year, I felt really bad.  It had been a difficult year opening a "new" school (going from 9/10 to 9th only with over 1300 students), working with new administration, being the building test coordinator, and dealing with a lot of stress.  I was basically exhausted, but I also began to notice some swelling in my feet.

After school with the kids ended, I made an appointment to see Dr. E.  I had an echo ran then met with him.  Ejection fraction was still in the 60's and the echo showed no issues with the heart, however, he agreed that I was putting on some water and increased my Lasix dosage to twice a day along with the same increase in potassium.  He also prescribed some compression socks, set me up with a Doppler echo of my legs to check the valves in the veins, and told me that I would have blood work in two weeks to check my kidneys with the new script, then again in September.  If all went well, he'd see me in December but if I continued to feel bad to get back with him asap.  After dropping about 5 lbs of water weight in about a week, and finally getting away from work, I felt a great deal better.

Most of the rest of my summer has been spent doing some appointments I had put off such as a mammogram, bone density test, primary doc appointment, eye appointment (gotta love having to get bifocal contacts), taking my folks on a quick trip to visit old friends in Illinois, and going to a conference for the school in Tucson.

While in Tucson, I met some co-workers and we visited with someone we worked with the last year we were a 9/10 center who have moved their after retiring in Oklahoma to "double dip" retirement in Arizona.  The two nights I was there, they drove from about an hour away to show me where they lived, their schools, and a fun trip up Mt. Lemmon where we were nearly stuck by a tree across the road.  Nothing like being 106 when they picked me up at ground level in Tucson, going up about 8500 ft to where it was 62 degrees with 15 mph winds that knock down trees across the road after being in a Jeep with the top down as it rained on you.  Great memories!

Now, I have about 10 days till I have to report back.  I'm trying to get excited.  And I'm trying to find fun ways to spend these last days.  Last week, a co-worker and I went to one of the Casino's here in town...spent 5 hours and wound up making $50.  Plan on going to another one next week...hope the luck continues.  My father has eye surgery on Friday so I'll be going with them to that.  I had hoped to take another little trip someplace but time is running out.  I think, instead, I may take a trip with a friend to Nashville over Fall Break to get away and relieve some of the beginning of the year stress.

That was one of the things I was told when I saw Dr. E....to take better care of myself and not worry about others.  So, this year, my goal is to try to take some time off when I feel stressed, find ways to enjoy myself more, and find some way to be able to afford vacations more often!

One Decade Down....

On the 23rd, I will celebrate 10 additional years to my life.  I've been reviewing some notes and journals that I kept during that time, and now 10 years later, I've got some interesting memories to share.


I'll start with finding out the news that I had a heart problem.  I was moving some furniture during President's Day weekend and found myself completely out of breath and exhausted, which was highly unlike me.  When Spring Break rolled around, I couldn't sleep and would throw up what seemed to be just a liquid.  I went to the doctor who thought I was developing asthma and we spent a month working on that until he finally recommended me to a lung specialist.  He ran a few tests then determined that I needed to see a cardiologist...and he was the first to mention transplant.


He made arrangements for me to get with what he called "the best cardio guy in this area who also specializes in transplants" and I began a series of appointments with Dr. E.  I'm not one who wants things sugar-coated, and Dr. E didn't.  He said he wanted to run some tests but it did look like my heart was failing and we'd try medication before talking about transplant.  Within a month I dropped about 30 lbs of fluid and began my ritual of medication.  Little did I know that 7 pills a day would be a low amount.


On the second to last day of school, I went in for a heart cath and biopsy.  Everything seemed to be going well, so well that I glanced at a clock in the lab and thought I'd get back to school the next day with no problem.  Then, I swear I heard someone say "uh oh" and things went black.  Later, I found out that during the biopsy a hole had been punctured in my heart and I began to flatline.  I woke up in ICU, where they had to strap me to the bed because I kept saying I had to get up to get to work.  Four days later, the Sunday of Memorial Day Weekend, I went home to my parents and on Tuesday I did show back up to work, albeit in a very minor way.


Thus began about a 2 year journey toward transplantation.  Doctor appointments every month, procedures every 3 months, lab work constantly, a $40,000 defib installation because if my heart stopped it might not restart.  Finally, there came a point where we had to discuss transplant.


To be honest, I was against it.  I had lived a decent life, had no children or husband to take into consideration, and did not want to take a healthy heart away from a child or someone who had a real reason to continue to live.  Doctors and nurses kept assuring me that I would get a heart that was meant for me, and finally I agreed to meet a transplant survivor who Dr. E said was a lot like me in attitude.  I met Debbie with my parents at Eskimo Joe's in Stillwater and had a really good talk with her.  In August, when I went to my 3 month appointment with Dr. E, I agreed to be tested to go on the list.


Let me tell you, transplant testing is not much fun.  More heart caths, more biopsies, 20 vials of blood from someone who has a hard time getting a blood draw or having IV's inserted, lung tests, liver tests, echos, scans, interviews with transplant team members to see if you were mentally stable, insurance checks to see what was covered and what wasn't, talks with family members to see if after care was going to be available.  Finally, one last hurdle...meeting the surgeon that would preform the transplant itself.  None of us were impressed by him...we thought him to be very arrogant.  But, when you think about it, they are holding your life in their hands and have to be very "cold" to keep from getting emotionally involved.  We later came to love the man.


Finally, in early September, I was called and told to go get the pager...I had made the list.  One thing about living in Oklahoma (and I was fortunate that Tulsa had a transplant center at the time) is that we have a great many automobile/motorcycle accidents and gun shot victims.  Bad for them but great for transplants.  And, many of our citizens are organ donors.  The doctors felt like I could get a heart within 6 months.  But, one thing that did show in all those tests was that I had an odd antigen, which meant that the match would have to be almost perfect in order for me to not reject it.  I began to think of things like phone trees for contacts, making notes for arrangements in case something did happen, and writing letters to some special friends who had been a source of great support.  I also met the 20-25 other transplant survivors who attended clinic with me.


Fortunately, I worked in a building with a great support staff...from the very first event till when I moved to another site.  My every 3 months tests were moved to once a month, doctor's visits became nearly every 3 weeks, lab work more often.  Staff members offered to help me in any way they could.  Sometimes, I'd stop to pick up a few groceries and someone would see me trying to get the bags in my car.  They'd stop and load them for me then ask if I needed help getting them into my house.  Others offered to come do laundry for me.  My parents would come over once or twice a week to clean my house and do any errands for me.  My brother and sister-in-law would have me over for dinner because, if I tried to cook, I'd be so exhausted after that I wouldn't have the energy to eat.  My family and I went through training on what life would be like before, during, and after transplant and certain friends were given the same info to help post transplant.


By December, I was coming in about 8:30 in the morning and leaving about 2:30 in the afternoon.  I had a folding lounge chair in my office where I could take a short nap during lunch.  More medication was being prescribed and more energy was slipping away.  Then on the 13th, late in the evening, I got a call that there was a possible match and to get to the hospital.  After little brother found his pants, calls made to parents, bills written out and put in the mailbox, a close friend and her husband came and took me to the hospital. 


I was flipped in every direction possible to get a port line in...that's when we discovered that all the access points on that side were under my clavicle (which would become another issue later) and after being punctured about 20 times it was decided they'd wait till I got into surgery to worry about it.  Friends and family began to gather and finally, about 6:30 am, they wheeled me into surgery.  After giving me the anti-rejection meds and having me all prepped except for the actual incision, they turned the donor heart over and found some bruising.  Doctors determined that I wasn't in that bad a shape to run the risk of this not being a "perfect heart" and wheeled me back to a different room...my clue that it didn't work.


After that experience, I began to slip rapidly.  I started coming in about 9am and leaving about 2pm, followed by a couple of hours worth of napping to the Food Channel.  Doing laundry was exhausting, so my family would come over and buy my groceries, clean, and do whatever else needed to be done.  Doctor appointments became more frequent, and I began to move up on the transplant list.  I got a phone call from someone who attended the church I did who had also had a transplant about 7 years before, and Chuck became a source of laughs and support to me, and continued to be so until his passing a few years ago.


It was obvious to everyone in early February that something needed to change pretty fast...I was getting worse daily.  Our school suffered a tragedy when a staff member's daughter was murdered in a domestic violence.  I remember her mother telling me she wished I could have had her daughter's heart because maybe it might have made some sense then.  I was asked to come in and have 5 more vials of blood taken to be sent to hospitals in Missouri, Colorado, Texas, New Mexico, and Arkansas because the docs could see me slipping as well.  A cousin passed away from cancer and someone made the mistake of telling people that it was me and not her, causing an uncle to come to my parents home in tears because no one had told him what had happened.  I attended her funeral and burial, and went to my hometown's basketball game that evening.  It took all I could do to walk into the gym and up the stairs to sit.  A couple of classmates came by to see how I was doing and we left before the boys game was over because I was exhausted. 


So, on the morning of the 22nd, as soon as I got to work, I started counting the days till the end of the year.  I had decided that if I could make it to Spring Break continuing to work as I had been, I'd take a leave for the rest of the year and just rest.  That was a big decision because I needed the social aspect of being around people.  I'd been in the office about 30 minutes when the phone rang...the transplant clinic...who thought there was a match in the OKC area, but they wanted to check out that odd antigen to make sure there would be no issues.  Naturally, all that planning didn't work...little brother was supposed to fly out that morning, sister-in-law was on her way to Arkansas, parents were 30-45 minutes away, and all the school support was involved in meetings/testing/or Teacher of the Year events.  Luckily, little brother was able to make some changes and came to pick me up and took me to the clinic.  Within about an hour, it was decided that I could go ahead and check in because the prospect looked good.  That was Tuesday.


Family and friends began to gather again, probably knowing that this time needed to be the right time and the right heart.  But the weather wasn't being very cooperative...not unusual in Oklahoma.  We went from 40's and clear skies to rain to sleet to ice to snow within 24 hours.  The plan of life-flight the surgeon to OKC changed to hopefully being about to drive an ambulance over and back.  By about 2am on the 23rd, I had pretty much convinced myself that it wasn't going to happen.  then about 5am I was told that the doc was on his way back with the harvested heart and when he got within 30 minutes of the hospital they would take me down and begin preparations.  That was Wednesday.


And so it happened.  I woke up in ICU and knew immediately that I had a chance now.  They tell me that they talked to me and I woke up enough to show them that my blue eyes finally had some color back, but I don't remember it.  I do remember waking up the next day without a bunch of tubes down my throat and my parents, brother, and sister-in-law coming back....that was Friday.  And I sat up in a chair that day for a short time, and got to eat some food.


On Sunday, I had a visit from a friend and my parents, and I tried to watch the OSU-KU basketball game (one of the best ones they've had) and the nurse would come in and tell me not to get to excited so my heart rate wouldn't get to out of hand.  The rest of the time I slept.


On Monday I was moved to a room on a floor and began the now 10 year ongoing testing for rejection.  Weekly biopsies where they have go to through my left side and through valves (not ideal) which is more dangerous to me and more painful.  I walked without running out of breath for the first time in two years.  And by Thursday, 8 days post transplant, I was sent home with 65 pills to take on a daily basis.  Then another tragedy hit my school.  One of our students, one of my favorites who I could call to help me when I needed it, had a brain aneurism and was pronounced brain dead.  His parent said he came home the day of my transplant and talked about how neat it was that someone would donate life to a stranger, so they decided to do the same with his organs.  That was hard.  Since I couldn't be in public I couldn't attend the service.  A year later his mother and I met for dinner and talked about all the events surrounding that period of time and how special her son was.


For the next 6 week, it was constant testing.  Then for the next 5 months it was cardio rehab and trying to not do too much too soon because I felt so much better.  I reported back to school in August and immediately contracted CMV, a virus that can cause you to reject.  I had a new boss who hinted around that perhaps I needed to seek other employment.  Because of how supported I had been by the District, I didn't take it to the level that I legally could have, but I could see that it would be in my best interest to start thinking of a change.  Testing continued, blood work continued, and my daily regiment of meds was dropped to about 40.


The next Fall I changed buildings and found just as much support and love as where I was at.  While I hated leaving the staff of my previous school, I truly believe it was the best move for my health.  See, the thing about transplants is that if you don't reject within the first 7 years, your next big issue is the side effects from the anti-rejection meds...such as cancer, which is pretty common in my family.  And those 20-25 transplant survivors I mentioned earlier began to dwindle in number as they faced some of those side effects.


So, now it is 10 years later...and I think there are less than 5 of us still alive.  The average survival rate for a transplanted heart is 20 years...I'm halfway there.  I've had one rejection scare in 10 years that was enough to hospitalize me.  If the side effects don't kick in, if rejection doesn't develop, I'm facing the possibility of having to have another heart transplant in my future.  Honestly, I don't know if I'll do it.  I'm a realist.  I know that the past 10 years have been "extra time" for me.  I've pretty much met most of my goals...I've seen my parents 50th wedding anniversary (now working on 56), I've traveled to places I haven't been before (Vegas and Grand Canyon...still want to go to Italy and Europe) and been back to some of my favorite ones (Washington DC...still would like to get to Yellowstone), watched some of my friends and families children grow up and graduate (have a few more to go). 


I don't know what the next 10 years will hold.  I know I'm tired, and I had worried that it might be heart related until I noticed that my co-workers were tired as well.  It is hard opening a new grade level in a building with new designs, schemes, and beliefs.  My doctors tell me to start to slow down a bit, but since I'm not independently wealthy I still have to work as long as I can.  But, I also know I can't keep up this same pace for 10 more years, which is about how many I have left to go to retire.


I am grateful for the support given to me by family and friends for the past 10 years and, I'm sure, in the future.  I continue to take 60 pill a day now, get blood work and other tests ran.  I spend time with my parents as they are getting older and struggle with health issues of their own...never regret spending time with people you love.  I try to help my students as best I can, although my job has become more of a testing/meeting job than what I like it to be.  And thanks to little brother, I've been able to knock some things off my bucket list.


Decisions will be forthcoming, and I'll have to do what is best for my family and I when those have to be made.  In the meantime, I'll keep plugging along and hoping for the best.  I'll deal with the prednisone side effects, continue the 60 pills a day, and try to do the best job I can.  And I'll continue to believe that these "extra days" were given to me for a reason, because I can never repay the gift a 19 year old, 3 month newlywed gave me 10 years ago by just skipping by.  Her memory, Tiffany's memory, deserves the best I can give for as long as I can give it.


April is Organ Donation Month.  If you haven't thought about it, please do so.  Please, also share your desire with your family because even if you mark the box on your driver's license, your family can over-ride the decision.  I know many of my co-workers signed up after living my story with me.  If it was your child, your grandchild, wouldn't you want them to have the same opportunity I did?

Nine Years & Counting

I've been so busy with school-related stuff since the beginning of the year that my 9 year heart transplant anniversary slipped up on me.  I took some time this morning to go back over the journals I kept prior to, during and after the transplant and again realized just how blessed and fortunate I am.

First of all, I have to thank Tiffany's family for the gift of life.  As I rejoice, I'm sure they continue to grieve and miss this special young lady.  Even though she had made the decision to be an organ donor as soon as she got her driver's license, the final agreement had to be given by her family to follow her wishes.  I do know she donated several organs to others, and I continue to pray that they are doing as well as I.

Then I have to thank all of my family.  My immediate family supported me (and continue to do so) from the beginning.  From the little things like coming over to clean my house, put out my garbage, help me buy groceries to the bigger things of taking me to doctor appointments and procedures and helping to purchase medication....they have always been there for me.  Aunts, Uncles, Cousins....all of them....helped support my family and me in any way they could, and continue to do so.

Next, I have to thank my medical angels who continue to help me stay in such good shape.  Dr. E (who you can see on the new St Francis ad) and Dr. T continue to monitor my progress (or lack thereof as was the case in October) and help me keep on a good path.  The staff at my pink vacation home have always treated me well during every visit.  If I have to be in a hospital, I'm glad it is SFH!

I also have to thank BAPS for their support during these years.  Downtown administration allowed me to have shortened days as my health began to weaken.  Oliver staff helped in any way they could (and wore paper hearts on the day of my transplant) both before and after.  When I moved to Sequoyah, they continued that support as I still had to have procedures done.  And now my SIHS family (and future Freshman Academy) continue to be supportive and positive.  I work with great people!

Emmaus friends started a prayer chain from the beginning and kept it up for years after the transplant.  I still see many of those friends and am always grateful for their prayers and concerns.

Finally, I have to thank some special friends who were there from the beginning and continue to be today.  Lisa, Amy, Melenda, Dawn and their families....thanks for being there from the beginning and hanging in there with me now.  Love you guys!

I am a realist which to the dismay of many can seem a little harsh at times.  Transplant patients average around 20 years if there are no rejection issues or complications from the drugs we take (cancer related mostly).  I'm almost halfway through that length of time.  I call it "bonus time" because on the day they called about the possibility of the transplant, I was looking at the calendar to see if I could hold out to Spring Break then take the rest of the semester off.  I could barely walk into the building and often had to stop twice on the way to the office.  I could tell I was getting weaker and weaker each day.  From the day of the transplant on, I've felt great and for the most part have done well.

I had many dreams once upon a time....now I've learned to just enjoy each day as it is.  I'm grateful every morning I wake up and every day I go to sleep.  I have no idea how long I will walk this Earth, but for however long it may be I hope to find good in each day.  As Tim McGraw sings, "live like you were dying".  That's the best way to honor Tiffany and her gift...do the best you can each day.  Thank you, Tiffany...I'll continue to try to do that.

Reflections on 2013

As the days of 2013 run down, I'm taking a moment to reflect on what has occurred during the year. 

As January began, I was mid-way through my new job at the Intermediate level of Counseling as well as continuing with working Night/Virtual school two nights a week.  The Spring semester is extremely busy for counselors between enrollment and state testing taking most of the time.  Also in January, my docs decided that one of my anti-rejection drugs was putting stress on my kidneys and they decided to make a change back to Cellcept, one of the original ones I was on from the transplant.  This meant that I had to go back to having biopsies again to monitor rejection issues.

February to May were taken up with night school, day school responsibilities, and dealing with 3 biopsies and the annual heart cath.  All the reports came back with no rejection and levels were adjusted to where the doctors felt comfortable.

By the time I left my job in June, I was tired.  Working day and night for two years was stressful, although I loved every minute of it.  I had hoped it could prove to any doubters that I could handle an administrative position, but alas, that doesn't seem to be in my future.  (I do always find it funny that people I know that ARE administrators often ask me my opinion on things they deal with as if I was an administrator.  Oh well.)  I spent the summer with my parents doing things for them (like mowing the yard, taking one day trips, etc.) and rested.

August came way too fast, and soon I was back at work.  A couple of weeks after returning I started coughing in a persistent manner.  Television and doctors had remarked that this summer was one of the worst for allergies, so I thought that was what was going on.  I fought through it until mid-September when I finally went to my primary care doctor, who also thought it was allergy related and prescribed medication for that.  I went back a second time where I had some xrays and CT scans ran that showed nothing in the sinus area, but the coughing continued.

I knew I had a 6 month appointment with the cardio docs the first days in October, so I delayed calling them.  Looking back, that wasn't the best decision.  When I went in for the echo, even I could tell there was something wrong.  After having about 60 of those over the years, you get to know what things are supposed to sound like, and this didn't sound good.  So, when I went in for my appointment the next day, I went in with a packed bag because I had a feeling I'd be staying at my pink vacation home for a day or so.

Sure enough, the cardio guys got really excited when my ejection fraction was at 29%....considered heart failure.  Funny thing, that day was the best I had felt since early August!  I was put in the hospital and was given a biopsy that day as well as taking some fluids off and high dosages of prednisone.  The biopsy showed mild rejection (not as bad as they had feared) and after about 5 days of being in the hospital, I was released to stay home for a week away from germy kids.  I also lost about 20 lbs of fluid and about 10 pounds of fat as a result.  I did go to the Eagles concert simply because I had been looking forward to it so much and it was probably the last time they would play together in Tulsa.  So, I masked up and enjoyed the show.

I came back to work right before Fall Break so I could adjust to everything and slowly get back in the swing of things.  I have fantastic co-workers who had covered for me while I was out and felt totally supported by my administration and faculty.  I had a biopsy right after I was released that still showed some rejection, so they wanted to do another one three weeks later.  It showed one sample with rejection which the doctor felt might have been the result of contamination on the instruments he used.

November was uneventful health wise, but busy with school.  We're changing from an Intermediate to a Freshman Academy next year, and all of us in the counseling department were hoping that we could stay together as a group because we work so well together.  So, the uncertainty of that was a bit stressful.  Also, I finally started getting reduced on prednisone which also meant reduction in Insulin shots.  Since I have a medicine-induced diabetes situation, the prednisone raised my sugar levels to where I had to give myself shots when my level was above 140.  As the prednisone came down, the frequency of those shots went away.

December came in a rush.  Another biopsy was done which showed no rejection, but the docs wanted me to stay on my low level of prednisone and continue with the current medications. I'll have another biopsy and the annual heart cath the first week in March. Oklahoma got hit with a very cold snap with snow and ice, so we were out for 4 days at the worst possible time.  But, on a good note, we did find out that all 3 of us would remain at the Freshman Academy as counselors.   The last week was sent doing schedule changes for students, placing students in alternative programs, talking with parents, and doing all we could to finalize plans since that busy Spring semester was advancing rapidly.  In fact, if we are in our office 7 days total in the month of January I will be surprised!

The holidays were spent with family and I was gifted with much more that I should have been.  I am very blessed to have both parents, a supportive brother and sister-in-law, a four legged buddy, and an honorary mother-in-law to spend them with.  My mother had a little flair up with her sugar during the holidays and she still isn't feeling well.  So, I handled the Christmas Eve dinner then we went to the show and out to eat on Christmas so Robert and Susan could have a quiet day with her family. 

This week, I've been dealing with a back issue that has given me some grief.  I called one of my counseling buddies who was kind enough to come over and help me put up my Christmas decorations....again, very blessed to have such people in my life!  Tomorrow, I plan on getting out and doing a few errands then settling in for a quiet night at home. 

I know I'm lucky to have dodged a major problem with the fall medical issues.  It could have been so much worse.  It was a reminder that you can't take things for granted and to be diligent in doing what is needed to monitor your health.  As 2014 comes in, I'll face challenges like flu and exhaustion from all that has to be done, especially in January.  But hopefully, we will all get through it and begin the new challenge next Fall rested and ready.

As ever, I'm grateful to still be on this Earth and feel fortunate to have been given this opportunity by Tiffany and her family.  If you have never considered being an organ donor, please discuss it with your family and think  about becoming one.  I wouldn't still be here if Tiffany hadn't made that choice at 16 and discussed it with her family.

Here's hoping that we all have a healthy 2014.  May you and yours enjoy the rest of the holidays and each other!  Happy New Year!

A Bump In the Road

Well, my October started out pretty exciting this year.  Not exactly how I wanted it to go, but a sober reminder that you can't take anything for granted.

Back in February, the cardio docs wanted to change one of my anti-rejection drugs because of the affect it had on my kidneys....let's face it, I don't need to deal with a kidney transplant!  So, after a couple of biopsies where I was on a low dosage of Cellcept, things looked great.  Blood work was coming back fine, no rejection issues were being seen, and everyone thought everything was fine.  I was finishing school and working at night so naturally I was tired but for the most part, I felt fine.

This summer, I rested.  I wasn't as active as I probably should have been and I began to notice a cough in July.  Hearing that allergies were very high this year, I was thinking it was just that.  Then, after a couple of weeks of being at school I could do nothing but cough.  My coworkers took up the mantle and did some of the presentations we were supposed to do because I couldn't talk without breaking out into a coughing fit.  I went to my primary care doc who recommended Claritin and a 14 day round of antibiotic.  And she noticed that my blood pressure and heart rate was up.  I went back 2 weeks later and she decided to change my BP meds after consulting with my cardio docs, but a key bit of information wasn't exchanged....my heart beats had gone up 20 beats/min faster than it should have.

I knew I had a 6 month cardio checkup coming in October so decided to not go ahead and make an appointment earlier, which I probably should have.  I also had gotten out of the habit of doing some things that transplant patients need to monitor, like weight, sodium intake, etc. and so I didn't notice that I was putting on extra water weight.  My hands and feet don't swell like others, my calfs and arms do.  When I noticed that I had put on water weight and I added extra Lasix to help take it off, but it didn't get it all.

I had an echocardiogram on the 30th and since this was something like #35, I could tell that something wasn't quite right about the heart's performance as soon as I heard the test.  So, knowing I met with the cardio docs the next morning I went ahead and packed a bag to take just in case.  I was right.  The echo showed an ejection fraction (the ability of your heart to pump) at 29% which is heart failure....since the transplant mine has run somewhere between 65% and 55%.  Naturally, this caused my cardio docs to freak and they put me in the hospital.  The ironic thing is that Tuesday was the best I had felt in a month because I decided to stop taking the Claritin and added the extra Lasix.

But, transplant patients have a very delicate chemical balance to follow, and all of this had thrown me off completely.  I had a biopsy done that afternoon and a Swan catheter to measure the inside of the heart was added.  I was put on large dosages of Lasix and Prednisone to help with the rejection possibilities.  Luckily enough, I haven't seem to have done any major damage to the transplanted heart.  I'm back up to around 60 pills a day (I will come off of some of them gradually) and now watching my diet a little closer.  I go back in a week to get another echo to check the EF (it was 49% at checkout) and check my progress with the cardio docs.  I stayed off work this week because of being on high prednisone and around sickly kids at work but am going back next week full time for 2.5 days then will have Fall Break to rest some more.  By that time, I'll be on a much lower dosage of prednisone and hopefully off Insulin (this is as a result of the high dosage of Prednisone) and back to oral meds for that.  One good side effect is that I'm losing a little weight as well!

This is a great reminder for those of us who get complacent with our health.  We need to get active, we need to watch our sodium intake and sugar intake, and we need to be proactive in our health care.  If any of the pieces of the puzzle were figured out earlier, we probably could have avoided the hospital stay. I had one other instance of this same type of rejection right after the transplant and bounced back, so everyone is thinking the same will occur this time.  It wasn't a major rejection and no tissue damage seems to have been done.

I'm fortunate that my parents were able to be around to help as well as my brother.  My parents are getting older and this takes a toll on them, but friends and family also stepped up to check on them for which I will be eternally grateful.  Transplant patients often have a life expectancy of around 20 years and I'm approaching year 9.  I have always said that these extra years have been bonus time because I was so sick before the transplant.  My plan is to be around for a lot more years but I also have to understand that situations like this will not help my situation. I'll just keep plugging along and see what happens and cross all those bridges when I need to.  Live in no fear, enjoy each day to the fullest that I can, and go forward with faith.  Not a bad way to live!

Heaven Is For Real!

My summer has been full of closet cleaning, family history research, and trying to catch up on my reading and music enjoyment.  Anyone that knows me, knows that my music and reading tastes vary greatly.  I'll listen to anything from Billy Idol to Bob Wills, and read anything from Karen Kingsbury to Tom Clancy to Ken Follett....don't judge!  But one book that I have recently read was truly a joy to read...so much that I read till 4am!

Heaven Is For Real is the story of a little boy who, in a very critical medical situation, believes that he spent 3 minutes in Heaven and provides his minister father with interesting information on what Heaven is like and those that reside there.  It is moving, it is humorous, and it is faith building.

Several times I've been asked if I had a near death experience when I had my transplant...and the answer is no.  However, I do know that the Lord was watching over me and was with me the entire way.  And it is with that same faith that I believe today.  The Lord put the Jeremiah verse about "having plans for you...plans for good and not evil" on my heart during the "procedure that became the ordeal", and it has stayed with me every since.  I've often been told that I had a peace around me as my condition worsened, and that is true.  I gave up all the anger, disappointment, and forgave those that I had held grudges against, and I turned everything over to God.  If it was His will that I survive, then fine.  If not, I had freed my soul.

Now, in the 8 years since, I'll admit that sometimes that anger and disappointment has come back, and I have to take some time and remember how much I've been given and let it go.  My job often doesn't show me immediate results, but I do know of at least one child that I managed to get out of a bad situation and if that was all I was I was saved to do, then that is fine.  But this book reminded me that all you need is a child-like faith and trust, and God will take care of the rest.

If you want to read something inspiring...give this book a chance.

All Clear!

After some medication changes that required me to go back in and have two more, somewhat painful, heart biopsies....I'm all clear!  It's not that I don't like seeing the old team of people who took care of me immediately post transplant, but darn it....those things hurt the more you have 'em!

You're not knocked out...they just give you a local near your carotid artery then stick a catheter in it to put the LONG (my term) grabber down to your heart.  Because I have to be special, they have to go in on my left side and through my heart valves to get to where they have to take the tissue...this makes for a more risky situation.  Fortunately, I have great docs who do their best to make it as comfortable as it can possibly be.

I'm just glad I don't have to do anymore!

8 Years and Counting

It seemed like it was going to be just another day.  I went to work, albiet a little later than everyone else, and arrived at my office.  The next day was the state writing test, so the other counselors were busy in preparation for that.  I started my computer and checked my emails.  Then, my cell phone rang and the caller ID showed the transplant clinic.

Judy, one of the nurses, told me that there was a possibility of a heart in OKC, but they needed me to come in and have some blood evaluated to make sure my mysterious antigen issue would not cause rejection problems.  If it did, then the heart would have to go to someone else.  The transplant clinic was underway and they did not want any of the other transplant patients to know what was going on.  This was for the privacy of my family and myself as they didn't want previous transplant patients hanging around the hospital waiting for the outcome.

I had set up this elaborate plan for when the call came to get me to the hospital, but this was the day it wouldn't work.  Amy was at a principal's meeting, Lisa and Melenda were teaching class (Melenda was also Teacher of the Year and had that event to attend later that night), Dawn was the only administrator in our building because one was at a band conference and the other was at the same meeting as Amy, Susan was on her way to Arkansas, my fellow counselors were busy preparing for the test, and Robert was supposed to be busy with something at work.  We had always been advised to have someone drive us to the hospital, so I tried Robert, who managed to get away and meet me at my house and drive me to the hospital.  Phone calls were made to my parents and Susan, who turned around and headed back.

Robert got me to the hospital where they drew blood after they snuck me into the transplant clinic.  Before my parents could arrive to Tulsa from Chouteau, they decided to go ahead and get me in CICU and start preparing for the transplant.  Very little information was available to us on the donor, the only thing they would say was that the donor was an organ donor and that multiple teams were being flown in to harvest donations....and that the donor was fairly young.  Family and friends, co-workers, and others came to the hospital to wait with us....and wait....and wait.  Chuck Stophel, a transplant patient himself from my church, found out what was going on and stayed around to offer support and comedy relief.

Of course, nothing could go easily so because of weather issues the teams were delayed in arriving.  We were told about 10 pm that it would happen early the next morning and that they would either Lifeflight the heart to Tulsa or make the trip by ambulance.  Then Tulsa started getting the weather and finally about 1am they sent the surgeon by ambulance to OKC to harvest the heart.

Early the next morning, everyone began to gather back to my room then suddenly the pace of the nurses began to pick up.  All of the sudden they said it was time, gave me a shot, and began to take me to the operating room.  The CICU nurses and the operation room nurse got into it over where family and friends were to wait....all I could think of was "I don't care about them...get me to the OR!".

They always told me that if I woke up in the same room the transplant went through.  I'd already been through the disappointment of a trial run, and frankly I wasn't sure how I would handle it again.  As soon as the ambulance was five minutes out, the surgeon with me began the process of putting me on the heart/lung machine.  They tell me approximately an hour later the surgery was complete.  I remember waking up once that day and realizing I was in the same room, but I don't remember anything else.  My family tells me that they talked to me and I would open my eyes at them.  My dad made the remark to friends that he knew I was going to be fine because my blue eyes were shining like they did before I got sick.

As this 8 year anniversary comes up, I have to remember Tiffany Mashore Fleehart who lost her life at age 20 to give me a second chance at mine.  I have to thank all the doctors and nurses who gave me such excellent care not only during the transplant but the multiple tests that I have undergone since, and will undergo again tomorrow.  I also have to thank my family and friends who did everything they could to keep me positive and help me prepare for a new life or the end of my old one, whichever it turned out to be.  I also have to thank the hundreds of people in area churches who placed me on their prayer lists.

I've been very fortunate to not have any issues since the transplant until this year.  Recently, my kidney function has been acting up so they changed my anti-rejection medication to something I was on right after the transplant.  The problem with anti-rejection drugs is that they have some serious side effects, but I can't afford to lose any other major organs either.  So, not only do I get my 11th heart cath tomorrow but also get to have somewhere around my 25th heart biopsy.  Hopefully, both will show no problems and maybe, just maybe, I can get by with only one more biopsy in a couple of months.

But, even with the pain, expense, and time involved in all of this it is better than the alternative.  For in the last 8 years I've seen my parents celebrate their 50th anniversary, had the honor of speaking at two of my relatives services, watched my friend's children continue to grow up, and maybe help a child or two out at school.  I call this "my bonus time"....and it has been a bonus.

Thank you to all of you who helped along the way.  You have my eternal gratitude!

Bump in the Road

It was time for my usual 3 month blood work check, and wouldn't you know, I spent a couple of days fearing I had the flu prior to the tests.  Luckily enough, it wasn't the flu but I couldn't figure out what was causing so much stomach pain.  It was so bad that if I hadn't had gall bladder surgery in October I would have sworn I was having an attack.  So I wasn't that surprised when some things in the blood work was off.  But I was surprised to receive a call from the cardio office asking to set up an appointment.

It seems that my creatin level had nearly doubled since October, which is a little alarming for transplant patients.  The anti-rejection drugs we have to take have many serious side effects and we have to monitor kidney and liver levels closely.  My liver enzymes had been up before the surgery and while they're still a little above where they would like them to be, they had dropped since October.  My blood sugar had dropped quite a bit and everything else was in good shape, but the kidneys were concerning.

I went in to talk with Dr. T today.  We decided to drop the cyclosporine and go back to taking Cellcept, an anti-rejection drug that I first came home with.  I will also have an xray and kidney ultrasound to check to see if I might have had kidney stones when I was having all the pain.  If nothing shows up to significant with those tests, then I'll go ahead and have the biopsy and annual heart cath at the same time.  I will have to have at least 2 or 3 biopsies in the next couple of months.  I'll also have more blood work ran at the end of the week.

Not thrilled about that at all as they are painful and expensive and it means more time away from work.  But I don't really have much choice in the matter.  The alternative is not great. 

With prayers and support from family and friends, on I will march.

Another Slice and Dice

Upon visiting with Dr. E about my liver enzymes being high and some issues I'd been having with eating (and keeping food down), he suggested that I visit a surgeon and talk about gall bladder removal.  So, on to yet another doc...Dr. Meece.

He agreed that it was probably a good decision to remove the gall bladder, and after considering the school calendar and some family related items, I decided to spend my Fall Break having surgery.  So, the 17th (little bro's birthday) at 5am, the folks and I trekked to my favorite pink home away from home for what amounted to about a 30 minute surgery.  Was back home by 10am and in bed sleeping.

For the most part, things have gone very well.  The surgery was done laparoscopicly so I have about 4 "holes" that I have to contend with.  The main one is in the same spot as the drain tubes for the transplant, which has always been a tender area.  I went back today for the follow up...@ 20 stones and no work for the rest of the week.  While I don't like being away from work, I have to admit, a few days of extra rest will be nice!

New Challenges, New Dreams

It has been a busy summer around my house.  School ended (finally!) in early June for me, and I took a near week long vacation to Washington DC with some of our students who made National History Day (and won an award!).  Then, I had about 2 weeks until I returned to summer school and conducted summer EOI testing....about 130 of them.  Toward the end of that, I interviewed for a counseling position at one of our 9/10 grade schools and got the job, which resulted in returning to school about 5 days earlier than I was going to.

So, thanks to my parents who were willing to sweat during this 110 degree weather we've been having, I moved my office.  Now, the site I'm moving to has been undergoing some construction so I couldn't really set things up until the end of last week when we returned.  So, I've spent this past week arranging an office, enrolling kids, and enjoying getting to know my new co-workers.

I loved the people I worked with at the middle school I was at....they create a family atmosphere and care for each other and the kids.  But, after losing Chuck this summer I realized that I have a short time to realize the dream of being in administration, and after 15 years of middle school I felt that I needed to expand my experience.  So, when this opportunity came up, I went for it.

I'm going to miss my Sequoyah family, but Jo and Troy (my fellow counselors) have made me feel very welcome at South.  I know the challenges will be similar even if the age is a little older, but I believe the experience will be worth it.  It is always an anxious time when you move to a new building, deal with new kids/staff/parents, and do things you've never done before.  But, I felt it was time for a change for me and a chance to follow a dream.  Here's hoping it works out!

For Chuck, With Love

Every now and then, God places very special people in your path of life.  You may not realize it at the time, or take it for granted when it happens, but you do when they leave.  I knew Chuck Stophel was special the first moment I ever spoke to him, but I didn't realize at the time how much I would be blessed by him.

The Fall of 2004 was a difficult one for me.  I had been accepted into the transplant program and was just waiting for the call.  I had taken my time deciding on going ahead with the transplant for several factors:  not wanting to take a heart away from a child who might have a longer chance at life, the complications and rejection issues that develop from the surgery and medications that you take, the cost of long term care after. 

One evening, an Emmaus friend of mine - Nancy Williams - asked me if it would be ok to give my phone number to a man that sang in her praise band with her at Asbury.  Recently, she had learned that he had a heart transplant in his mid '20's and thought that I might benefit from talking with him.  Her nursing radar went up as soon as she found out and she felt that he might be able to help with some of my concerns.  So, a week or so later, my phone rang about 8pm one evening and this sweet voice said, "Hi, my name is Chuck Stophel and you don't know me but I think we are going to have a lot in common soon."  And for the next 90 minutes, we talked about transplants, life as a transplant patient, practical jokes he pulled with kids as a result (a jello heart meal in front of elementary kids resulted in a lot of throwing up!), and faith.  And after I hung up, I felt better than I had for a long time.

On my next visit to the transplant clinic, Chuck happened to be there and so we met.  Chuck and Dick Thomson were the unspoken leaders of the transplant support team and would often come in on Tuesday's to check on other patients and offer ways to help.  He was about 38 and had been post transplant, I believe, about 10 years.  He had battled cancer as a young child and won.  His office had come down with a lot of flu related illnesses and he went to the doctor to get put on medication to prevent catching it himself since he had two small sons (one a newborn) in his house.  While there, they discovered his heart problem.

Back in those days, when you got to the point of not being able to get around they put you in the hospital.  Chuck's issue progressed rapidly and soon he was hospitalized, leaving his young wife and children behind.  But Chuck was a very strong Christian and never lost his faith...and despite several weeks of hospitalization he did have a match come through. 

The day that I got the call for a possible heart, they were having clinic so Chuck was there.  Clinic didn't want people to know what was going on so they snuck me into the hospital then out to CICU, but somehow Chuck found out what was happening.  He came up to CICU, met my family and friends, and provided several laughs as we waited to see if the heart was going to be a match.  As the day became longer, Chuck still hung around.  They thought we might be able to do the surgery that evening...then sometime around midnight, then eventually they said it would be early the next morning.  All the time, Chuck stayed.  He came into to ICU one time with tears running down his face from laughing at a couple of my friends who were staring outside at the Lifeflight helicopter, thinking it might contain the heart, and he had quietly walked up behind them then loudly proclaimed that it the window was loose or something like that.  He told me it was like watching "hear no evil/see no evil/speak no evil" and that they had jumped about 5 feet high.  The next day as I was in surgery he explained everything that was going on as the calls came in about progress, and he followed up with checking on my family and friends the days I stayed in the hospital.

My first outing was to attend Easter services at Asbury, where Chuck sang a special during the service.  Chuck had been blessed with a beautiful voice that he used as praise to the Lord.  He saw us in the lobby and came and spent some time with us.  Next time was at the Transplant softball game where Chuck was the organizer and MC.  His small sons played for him.  I never had the chance to actually meet his wife, Sara, but it was always obvious from the way he spoke about her that she was the love of his life.  Chuck and Sara did some ministry with couples and started doing some traveling, so for a while I didn't see him as often.

Then, two years ago came the sad news that cancer had returned to his life.  As a transplant patient, the medications you take have some serious side effects and can cause cancer.  It didn't help that Chuck had battled it when he was healthy; it made the chance for it coming back much stronger with being on anti-rejection drugs.  When Dick passed away (also from cancer), I noticed that he didn't look well and he told me what was going on.  He was undergoing chemo and it was taking a toll on him.  A few weeks later, I heard that he had taken a turn for the worse and they weren't sure that he'd be able to get through any further chemo.

But, that didn't stop Chuck.  It was close but he fought on with faith that he would not lose this battle, and he won.  He had started working at ORU just prior to being diagnosed but the expense of the bills and the insurance were an issue, so some of his friends held a fund-raising event for him that my parents and I attended.  Chuck was weak but he was reveling in the event and proclaimed at the end that he would defeat this challenge with the prayers of his friends.  And he was able to go back to work for a short period of time.

But, it came back and he was back to doing chemo, traveling to MD Anderson, and fighting the fight again.  Last night, cancer may have beat his body but it never beat his spirit.  He remained faithful to the end, praising the Lord with his testimony, faith, and song. 
Chuck told me that he wanted to do the transplant because he wanted to live long enough to see his sons become Men of God.  From what I've read on Facebook, he accomplished that.  Nik posted a picture of his parents during Chuck's last moments on this earth....Chuck with tubes but his eyes bright and open looking adoringly at Sara, who was holding his had and smiling at him.  Nik said he'd been blessed to have had them as role models and thanked his father for teaching him what true faith was.

I'm going to miss Chuck.  While we didn't talk as often as we should have (my fault, not his) recently, I always knew he was there and would understand whatever I was going through.  But like Nik, Asher, Cres, and Sara....I was blessed to have him lead by example in life, in faith, and in death.

Well done, Good and Faithful Servant.

Time Flies When You're Having Fun!

I just realized that I haven't updated since my 7 year anniversary in February!  And here it is nearly June!  Yep...time flies!

Annual heart cath and tests were run in March with positive results except for one issue...my liver enzymes were off.  In most people, this is not a major issue but transplant patients don't need another major organ failing or have their medication start affecting the other organs.  So, every 3 weeks or so I went back to the vampire (actually, Cami is a very nice lady who takes care of my blood draws) at SFH and had liver enzymes ran.  After about 3 different tests with little improvement, I was finally sent to have an abdominal ultrasound ran to see if they could tell anything without doing any other invasive procedures.

The results were that I have gallstones and a somewhat "fatty" liver.  Apparently, the gall stones aren't to the point of being serious problems as no pressure was put on my for yet another surgery.  I just have to watch and if I start having issues, then they'll need to see about taking it out.  Since I've dealt with enough hospitals and surgeries, I'm in no hurry!

Tomorrow is my last day at school as well.  I've worked two jobs this year...my counseling job during the day and a counselor/administrator for our night virtual school program.  I'm still waiting to hear if they'll need me to help with the summer program, but I'm looking forward to a little time to relax.  I'm also going to take a short trip to Washington DC with another teacher and some of our kids.  I was last there when I was 9 and have always wanted to go back, so I'm really looking forward to it!

Why did I do two jobs?  My Master's is in Administration and I've wanted to get moving into that direction since the transplant, however, whether it is said or not, I believe the "powers that be" have some concerns over my stamina in doing the job because of the surgery.  So, my thought was that if I put in as many hours as an administrator does by doing both jobs (and the stress that goes with it) maybe I can prove that I can handle the job....if not in this district then maybe in some other.  Maybe it will pay off, maybe it won't.  But I had to try.

Will I relax and rest over the summer?  Probably not.  I get bored easily so unless I find some pretty good projects to do I can imagine how I'll be in about 3 weeks.  I'll spend time with my family and see what happens in the days ahead.  One day at a time....