Times for Thanksgiving

From early November until the beginning of the year, each year, I'm reminded about how grateful and blessed I am to have been given this second chance at life.  My donor, Tiffany Mashore, had her 20th birthday during the first week in November of 2004 then was married before Thanksgiving.  The following February, she was giving me her heart. 

I often think of her family during these 6 weeks or so...how lonely it must be for her young husband, how difficult it must be for her family to share holidays without her being around.  I've never been able to visit with her family...I thought I would be able to but I've just never had the courage.  Tiffany's grandmother calls my mother every now and then, and she seems to understand why I can't make that connection.  There are days I still feel guilty over my inability to make that call, but I've been told by transplant coordinators that it will happen at my own pace.

I've also been thinking about those transplant survivors in this area who have passed away this year...we lost another one last week.  We survivors know that we've been given a second chance, and we try to live our life in a way to honor the gift we've been given.  Our situation can change with one germ, one cancer cell, one organ failure.  Each day that we are here we should be grateful...I know I am.

Ok till February

After seven more vials of blood, I'm happy to state that all my readings were in great shape and all docs seem to be very happy.  My latest challenge, the blood sugar issue, seemed to be fine.  It has dropped a full point since March and all bloodwork seemed to indicate that I'm taking just enough meds and kidney and pancreas functions are fine.

Been given clear sailing until February when I have all my annual tests.  Happy for that because it was total confusion as to getting the blood work completed.  I usually go to Cami and have the draw, but she was out on this particular day.  Her substitute was running behind with all the surgery draws and sent me up to the main lab...who then could not find the orders for the blood draw from the transplant clinic.  What usually takes 30-45 minutes max (I get there @ 6:15 am to avoid all these issues) wound up taking almost two hours.  Wasn't a happy camper.

But, in the long run, I'm alive and still kicking.  Our transplant group lost another member this week.  She'd been struggling with issues for a while now.  Our numbers are dwindling, especially since SFH no longer does transplants. 

On a positive note, I'm seeing more and more promotions for transplants...whether it is because I'm more cognizant or if others are taking up the cause.  I've seen NASCAR promotions, PGA segments, and ESPN will do a segment over the Thanksgiving holiday about a college player who in death helped others.  Glad to see that happening.

Locally, the tragic death of a couple of teenage girls resulted in a "rebirth" for numerous others.  I only know this because of a distant connection with one of the families.  But, I'm hoping that the same thing will happen to the friends of this young lady as did when I was waiting for my transplant...people will start to think about how easy it is to sign up for organ donation and follow up by doing so.  Lots of lives can continue to be saved if that simple act is done and the family is aware of the request.  If you haven't signed up to be a donor, please consider doing so!

Until We Meet Again, Dick

Upon my first visit to the transplant clinic to undergo tests for acceptance into the program, I met a kindly older gentleman by the name of Dick Thomason.  Dick had undergone a heart transplant several years earlier and had taken it upon himself to spread the word of organ donation.  His lovely wife, herself not in the best of health, worked side by side with him until her death about 2 years ago.

Dick and my parents made a strong connection.  He and my father would discuss the ins and outs of gardening, in particular how to grow tomatoes, as I underwent the numerous biopsies and other tests both before and after my transplant.  Dick was the keeper of extra medication...if you had some that you no longer needed, you gave it to Dick.  If you needed something that your insurance couldn't cover for a while, you called Dick.

He tirelessly worked for LifeShare.  He never pressured anyone to help him in his endeavors but would readily accept help if offered.  He came to every clinic date to make sure everyone was doing ok.  And he always lived life to the fullest.  He got involved in classic planes and cars.  When his wife passed away, he connected with an old classmate who was his first girlfriend, and they began to "see" each other.

Today, Dick lost his battle with one of the many complications that can happen to transplant patients.  There will never be a way to thank him for all he has done for each of us personally or for LifeShare in Oklahoma in general.  But, Heaven has been blessed by a very special angel this evening.....and Dick and his beloved wife are back together.  All is right in the Heavens.

Until we meet again, Dick......

Another Hollywood story

It's that time of the year when there is nothing on TV...except a few interesting sport events...so I decided to start DVR'ing a soap opera that is going off air just to see how it would end.  "As The World Turns" was a family staple as I was growing up so I thought I'd check it out and see how they were going to wrap up the final episodes.

Wouldn't you know...they were dealing with a heart transplant...and did the poor writers ever get it wrong.  The guy who was getting the transplant, well he was somewhat believable.  But when his brother the lawyer said he was going to a hospital and pullling some strings to get a heart for Chris...I about snorted.  There is NO WAY that you can just pull some strings and get a heart.  UNOS has that one covered pretty good.  Then, through typical soap opera magic, another heart became available and the tests for matching seemed to be done in less than 15 minutes....WRONG.  I must have given 50 vials of blood over the 6 months I was on the waiting list to get a transplant.  Each one was tested to the very smallest antibody and DNA code possible in order to make the transplant have the optimum success.  Then, the guy gets through the surgery and everybody and their dog comes into the room to see him with only a gown on.  LOL...my first days everybody who came to see me, and they were very limited, had to scrub up and wear masks...there was no kissing, hugging, or touching.

I guess I get irrated with these TV shows because they make it seem so simple when it is anything but.  They could have made it more dramatic to have played it out as it really happens....lots of testing, lots of calls about "we think we have a heart but we're not sure", trial runs to the hospital only to have it not be the one.  They make it sound so simple when it is anything but, and they degrade the ultimate gift that is given to the donor and their family.

One of these days, I'd like to see an accurate representation of what it really is like for the person who is sick, for their family, and for the donor family who suffers the loss of a life while giving life to someone else.  THAT would be a great story!

Goodbye BFF

Sad days lately.  One of my angels that helped get me through the entire transplant experience (in fact, one that noticed that something was wrong to begin with) is moving back to her hometown.  I know this is something that she has wanted for a long time, and I knew it was a possibility, but the day has finally arrived. 

Thank God we live in the age of technology!  Between text messaging, email, and video conferencing we will be able to stay in touch.  But...it won't be like it was before...knowing that if I had a problem I could call and she'd come running.  There is something about knowing you have that security blanket that makes you rest at night.

I've got other friends and family who I could call, but they are very involved in their jobs now.  BFF's life and mine were somewhat similar, so whenever one of us needed the other, it was a simple text or call and an evening with a 'rita away.  I'll miss that.  I"ll miss that alot.

But, it is time she spread her wings and fly solo for a while, and probably time for me to step out of the nest myself.  I'm looking around for a time filler that won't be too expensive.  One can only dream what fate will provide.

So, good luck Lisa!  Chat with you, one way or another, soon!

Rest well, Ken

We lost another transplant survivor this week.  Ken had his transplant in 1998 on his 36th wedding anniversary.  He had to have a kidney transplant 5 years ago due to complications from meds.  He was 66 years of age.  Although I did not have a very personal relationship with him, I did see him in clinic every now and then,  He was a kind man with a very sweet wife.  Rest well, Ken.

Our numbers continue to dwindle.  Tonight I am celebrating my 50th birthday with family and friends.  Live life to the fullest...for your time on this earth is short.

Germs...friend or foe??

After 5 years, one often tends to forget all those precautions you were told pre and post transplant about germs and their effects on your non-immune system.  I was talking with an adorable ten year old today about being at the lake, fishing, swimming, etc. when it all came crashing back.  No playing in the lake or water parks because of some long lettered disease that could attack the gastro system and be fatal.  Yep, fatal stuff from a water park.  No more fishing on the lake.  No swimming in the lake. 

I went to a Dave and Buster's last week and played on all the games.  I didn't have my hand sanitizer with me so as soon as we got home I immediately washed my hands.  Guess something stuck after all!

I say all this just as a reminder to myself that it doesn't take much too cause a problem.  Kiss the wrong guy at the wrong time.  Touch the wrong thing...take that any way you want...they all apply.  Eat at the wrong place.  But what does one do?  Stop living?  It is a delicate balancing act to keep healthy yet live a normal life.  Sometimes the board teeters a bit, by choice or not, and sometimes one just forgets the situation entirely.

When I decided to do the transplant, I vowed to not live my life as I had before....to make it be better.  In some ways it has, in others it is the same.  Right now, I feel I'm at a crossroads as to which way to go.  Guess we'll see what happens in the next few years to see how it may turn out!

One of the 67.4%

US statistics say that 5 year female survivors of heart transplants are at 67.4% now.  So, guess I'm part of that 67.4%.  It doesn't, however, say anything about what the 10 year survivor rates are....nor does it give the average age of these transplants.  Guess we'll just have to wait and see.

The Golfer With Two Transplants

I have to admire Erik Compton, the PGA golfer playing in the US Open this weekend.  At age 12 he had viral cardiomyopathy and had his first transplant.  Nineteen years later, after putting himself through UGA on a golf scholarship, he felt a tingling in his arms and rushed to the hospital (drove himself) only to find out that his heart was, once again, failing and went through his second transplant.  Figuring that his dream of playing professional golf was over, he hocked his clubs and started to give up his dream.  But, once again, he fought back and today is playing in the US Open.

I don't know if I could do that.  I don't know if I could go through all of this yet again.  It is hard and depressing enough to keep going for bloodwork, nevertheless to think of all the biopsies, tests, clinic visits, medicine changes, and everything else yet again.  You are warned when you agree to have a transplant that there will be LOTS of tests, hospital visits, and medicines to take.  And at the time, when that is the only light at the end of a long, dark tunnel, you think you can handle it.  But after a while it gets old.  It gets depressing.  It makes you angry.  Sometimes you look at all the pills and want to say, "I quit". 

Then you hear about a guy like this who has the courage to keep going.  Who has the bravery to follow his dream.  Who accepts the challenges and goes on.  It makes you feel like an ungrateful fool.  But everyone's situation is different.  Family or no family, support or no support, children or no children.  Reason to go on or nothing to keep you here.  Until you walk in the shoes of a transplant person, no one should judge or will ever understand.

Nobody has any guarantees in life.  Whether by choice or not, living can be a fleeting thing.  I wish I could just pack up and take a trip to Italy, or spend a month on the beach, or walk trails in the mountains...all with camera in hand.  I guess that would be my dream.  Oh well, maybe before this heart gives out....I'm not planning on another one.

small world - big heart

I was just scanning through my recent blogs and noticed that I had a transplant survivor as a follower.  So, being the curious person that I am, I hit the link and checked out his blog.  Then, I checked out his followers.  Wow, what a wake up call.

Here I am complaining about a bunch of little things and some of these people are fighting major rejection issues, dealing with complications from medications, facing more disease.  Talk about a slap in the face.  Despite all of this, they continue to be grateful for the simple act of living.  They are grateful for being alive, not complaining about their job, their homelife or lack of social life, or how they sometimes feel like someone else is living in their body with them.

Just reminded me that about 7 years ago this weekend, I could have been placed in a cemetery myself.  The "procedure that became the ordeal" fiasco.  Instead of going to decorate graves, someone could be coming to decorate mine.  What a reality check.

To all those who have survived and continue to live and inspire me, thank you.

Why can't they just trust me?

So, in March I had bloodwork ran that showed my cyclosporine levels had dropped waayyy down, and I was put on more cyclorsporine.  Now, what you need to know about this drug is that it has some serious side effects.  Some of the more minor ones involve leg cramps, mood/mental alterations, and insomnia.  So, off we went with an increase of 25 mg per day over my usual 100 mg .

Now, I've done this before, and I know when I feel worse.  And sure enough, the last three weeks have been hell.  Between not going to sleep, waking up in the middle of the night with major leg cramps, and having some really wierd dreams and thoughts, I had a feeling that the level had gotten too high.

Well, yesterday's reading seemed to indicate it.  What should be around 100-120 was 384, but since it had gone up so much the docs thought I'd taken my meds before I had bloodwork ran.  Now, come on...how many of these labs have I had done in the last 5 years?  Only once did that happen and it was because nobody told me they were going to do bloodwork.

So, today I had to go back and have it ran again....this time it was 184 and they were telling me to keep the same amount going.  Most of the time, I don't argue but this time I had to.  So, yet another run to SFH for bloodwork and clinic on the 8th...and hopefully somebody will finally believe me.  I don't think I can keep up with these side effects much longer.

Another Adjustment

In the neverending series of bloodwork I get, it was recently discovered that I needed to increase on of my anti-rejection drugs.  But, the followup work the next week showed the levels too high.  Seems to me that it all depends on which doctor reads the bloodwork!  So, I have to go back in a month and have it run again to see if another change is needed. 

It just always seems like there is something...I don't think in the 5 years since I've had this done that there hasn't been something that has needed to be changed, biopsied, scanned, poked, or prodded.  It can get really, really old.

But then again, what would the alternative be?

Goodbye again

Received news of the death of another local transplant patient.  I have no idea what the cause was, but it brings home the fragility of life that a transplant patient lives everyday.  May he rest in peace and his family remember all the extra days they were able to share together.

It is also interesting to watch the storyline on "General Hospital" right now.  I remember when the character "Maxie" got her heart quite a while ago...it was one of the most touching programs I've ever seen.  It showed the anguish of parents who had a child that was dying and were the aunt and uncle of the donor.  They've downplayed the character until recently when she came down with a case of "pneumonia".  Now, the writers are doing a good job of showing the vulnerability of transplant patients.  It appears that there is going to be a health crisis....the question will be whether it is a quick TV healing or if they will play the storyline out as they should.

But, all of this has once again reminded me of how fragile life for a tranplant patient can be and how we should live our life with no fear, but with determination to do all we can as long as we can.  I just hope others can believe in that as well and give us the benefit of the doubt that we are strong enough to handle what comes.

The Insignifance of Some Things

Spring Break is here, and for the sake of so many others, I am so glad.  There are a couple of times during the year that I get so fed up and tired with people over what seems to be such dribble.  I've often wondered if it is because of the transplant or just the fact that I get so sick and tired of listening to the fussing and feuding of pre-teen and teenagers.

Then, I ran across this quote from http://www.psychiatry.med/ about transplant patients:  "The calmness, confidence, and resistence that some transplant patients show may arise as a result of their decreased reliance on the importance of personal identity.  The huge amounts of emotional energy that are required to build and perpetuate a durable and controlling identity are available to them for other use.  They do not need to defend themselves against helplessness and vulnerability.  They have faced these horrors and survived.  Their happiness is less reliant upon beliefs and desires that can be stripped out from under them by illness.  Therefore there is less to be anxious and fearful about.  Their personhood is based on a more durable foundation that exists beyond the apparent strength of personal identity.  Their need for a desirable identity weakens.  The color of one's hair, the style of one's dress can rapidly appear of minimal consequence from the perspective of one who is (or has) confronting their own death.  The need to dominate or interact with others competively is also lessened.  Some who have lived through tragedy can see others' confusion lessened.  Some who have lifed through tragedy can see others' confusion at a glance.  This is because the complex ways by which others support their identity appear transparent to them."

Thank God I'm not a teenage anymore.

5 Year Anniversary

As I sat in a service honoring a very well respected, kind, yet somewhat irreverant man this evening, it dawned on me that today is the 5 year anniversary of my second chance on life.  I wondered....if things would have turned out differently would I have been as well thought of as Phil was?  Did I have the same outlook on life as he did?  He faced two rounds of serious cancer issues with grace and determination, all the while keeping a perspective on life that was unique and hopeful.  My outlook has become somewhat shaded in the last few years.  I've let life jade me a bit.  I've got to decide exactly what I want to do with what time I have left on this earth, and at my age, that is awfully intimidating.

Five years ago, all I was wanting to do was take another breath.  Once they remove you bad heart, your new one either has to work or you'll die...pretty simple as that.  For some reason that I can't fathom, some family suffered the ultimate sacrifice which allowed me to have this second chance.  Am I doing all I can to make that sacrifice worthwhile?

The typical life span of a transplant patient is 15 years.  I am one third of the way through it.  I take @ 40 pills a day to allow me to live.  When I agreed to go on the list, this was the life I agreed to.  Now, I have to decide what I want to do with it.

Survival...at least

I feel like I've been hit by a Mack truck.  Usually heart cath's make me sore but after a day or so I'm pretty much back to normal...not this time.  I feel like I've got a deep muscle bruise in my groin...worse than any surgery I've ever had.  However, this is about the 7th heart cath my groin has endured over the years so I guess it is about time for it to be sore!

The good news...all arteries are clear and the heart continues to look good.  Second good news...sugar has been lower but am starting a low dosage time-released med to help control it.  Bad news...the sugar problem itself.  Our family history and the fact that the meds raise it anyway should have been a warning but I'd been doing so well that dealing with it is a bit of a disappointment.  I can change that by watching my diet better and getting out and exercising more than I have been.  That's on me.  I'd gotten to a point where it was "
what the heck, I've been legally dead 3 times so I should be able to do what I want" and that's not where I need to be. 

What I need to do is take more time for me and my health.  I tend to put work ahead of everything and so far, it has been mostly for naught as far as professional progress goes.  The average life span of a transplant patient is 5-10 years, but that is usually because most transplant patients are in their 60's.  I'm hoping I can make it at least 15 more...Lord willing!

I'm fortunate that I have a brother who provides me with the means of enjoying events like concerts and plays that allow me to appreciate life.  I'm fortunate to have both parents who come to help whenever I need a trip to the hospital and been taken care of.  And I'm fortunate to have friends who stop by, call, or text to encourage me when I'm down.  With them, I can survive.

oh boy

The night before the heart cath and for some reason I can't sleep.  Something just seems a little off and I can't quite put my finger on it.  I went to my PCP today and he is prescribing some low dosage of diabetes medication for me to try after the procedure because the dye for the cath throws all the readings off.  I'm taking this God-awful tasting stuff to help the dye get out of my body so it doesn't damage my kidneys.  I don't know...something just seems off tonight.  Guess we'll find out after tomorrow! :)

And so it goes...

Today was my clinic visit before my 5 year anniversary tests, and for the most part, everything was great.  I ran into Chuck, the transplant patient (now 15 years) who called me and came to the hospital when I had the transplant, and had a chance to catch up with him.  I visited with a few other transplant patients who are either struggling or facing serious health issues.  And I got a little surprise of my own...I'm now diabetic.

Nothing really outrageous.  The medications we take can cause us to have cancer and diabetic issues, and it sure doesn't help that my family has strong predispositions to both.  But, I'm not as bad as one of the patients in today who had a reading of 505.

Now, I am not believing that this is totally related to the meds.  My gym has shut down and I have not been working out like I should be.  I've picked up a few pounds.  I've had a few margarita's.  But, I will do as they say (short of giving myself insulin shots) and take my blood sugar and adjust my diet in hopes of being like my grandmother.  It is kind of funny...my father just told me the other day that I reminded him of her and the way she became very regimental in how she took control of her diabetic issues and did exactly what the docs said.

I guess we shall see.

Next week I'll have the annual heart cath to see if things are working properly. 

Extra time

Since the last post we've lost 3 more transplant survivors.  One was after me, two were before.  As a transplant survivor you know that you are given extra time with no guarantees.  IF you survive the surgery.  IF you don't reject the heart.  IF you don't get complications from the medications.  IF some ordinary germ doesn't cause some major infection because you have no immune system.  Let's face it...there are a lot of IF's.

But, the extra time allows you to appreciate many things.  You appreciate your family and everything they do to help you pre and post transplant.  You appreciate your friends who stand by you from diagnosis to recovery and beyond, who listen to you, cry with you, believe in you.  You appreciate the simple act of taking a breath because you never know when it might be your last.  And you learn to live each day as if it was your last.  Not going overboard with doing the wrong things, but simply enjoying going to the movie with a friend or having lunch with your pals or spending the holidays with your family.

Next month will be 5 years of "extra time" for me.  Sometimes I get frustrated because I want to help others as much as they've helped me, yet my job has limitations that I sometimes can't change.  Sometimes I wish I could find another way of helping but the reality is that you do have to eat and pay for all these medications so you have to have a job and insurance!

The key to the whole thing is to take this extra time and do what you can, when you can , to whom you can, to the best of your ability.  If you can do that, then those extra days will be worth it.  Here's hoping I can take my own advice!

PS:  Friends and family.....go to the older posts and put some comments over things I've forgotten or stories that need to be shared.  You all know there were some funny ones!

7 Pounds

I've watched this movie a couple of times and found a few things interesting.  First, the feelings that Rosario Dawson's character goes through are scary accurate.  I remember how it was to hear those words about going on the transplant list and then the sudden reality of exactly everything that meant.  The way she felt and the things she went through as far as being tired so easily, passing out (or nearly) on people, etc., the need to continue to be independent even though you knew your time was growing shorter....I would like to know how those around me would rate it compared to what I went through just to see if somebody else thinks it is as accurate as mine.

The "direct transplant" issue of Will Smith's character, however, is not accurate as far as I know.  Hollywood often takes artistic freedom with transplants, and while I know that each transplant location has their own set of rules, I don't think UNOS would allow a direct transplant. 

I always find it interesting that the movies or TV will show someone going in for a transplant then coming out and people not having to wear masks or be in isolation.  I'm pretty sure that isn't the case anywhere.  But, if getting organ donation on TV or in Hollywood would increase donor awareness, then I guess a little "fudging" with the facts can't be all bad.

And another...

Another local transplant person passed away this week.  Just a little older than I, he had his transplant in Missouri and moved to our area a couple of years ago.  I met him one day in clinic...seemed like a nice guy.  He was ten years out on his transplant.  Again, have no idea what went wrong.  We've had a lot of ice and snow so it might have been related to shoveling.  H1N1 is going on around here so maybe that was the cause.  Or simply, maybe God decided he had finished his work here on earth. 

The way I'm starting to look at it is this....I've been "legally dead" three times already.  What extra time I've been given is for me to do the best I can with, and enjoy all those I care about.  Here's hoping it might be a little longer.

Lose one more

Lost another transplant survivor last week.  She was in her early 20's and had her transplant at 14.  Became a starting pitcher on the BA girls's softball team shortly after her transplant and part of a winning state championship team.  I have no idea what happened, what caused her death.  Sometimes young people get tired of taking all the medication (and I can understand that) and begin to feel like they don't need it anymore.  Sometimes rejection issues come up.  Sometimes there are viruses that attack our imnio-surpressed bodies and cause organ shut down.  Whatever the cause, it is a shame that such a courageous young woman lost her battle to live.  And it brings the reality of our life to light...whether you are a transplant patient or not life can be short.  Unfortunately, for those of us who are transplant patients, you can't take anything for granted.