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.