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?