Every Day Now...

Every day it seems I get a bit slower, maybe take a couple extra breaths here and there.  Steps have been tough for a while, and inclines too, now just walking slowly and carrying on any kind of conversation is a bit harder than I'm used to.

But...

Every day I am just a little more appreciative and thankful for how far I've come, and reminded in a million little ways how many people are genuinely pulling for me.  And honestly, that's the most important medicine I take right now...the kind words to me and Tammy and the rest of my family, really do help us look forward to another tomorrow.

Today was a day of laughter and friends and family and just silly stupid stuff.  Kind of a perfect day if you ask me.

Being on this list isn't so bad right now.  My goal is to always keep that attitude.   To not waste today waiting for a better tomorrow

Setting a PICC

Well yesterday was an interesting day.  I had my first appointment at the hospital since getting on the list.

We met with my transplant cardiologist, a woman named Kelly Ann, a couple years younger that me I believe, and just an awesome, awesome advocate for my care.  I'll write more on doctors and nurses at some point, cause they are such an important part of this journey.  But she really is just perfect for me and my temperament, and also simply top notch with helping Tammy take all this in.

We went over some of what will happen now that I am on the list, and what will happen when I get THE CALL.  It was stuff I had heard before, but it was always about some other patient.  I've said this before, but it's a bit surreal when I am the one being talked to, and about.

Anyway, my heart obviously is having a lot of trouble keeping up.  Just doing daily activities pushes it to its limit, and this is starting to result in some weight loss and muscle mass loss.  And my appetite comes and goes...and even when I am hungry, I am full after just a few bites.  And I used to be a HUGE eater. Like a whole pizza in one sitting kind of appetite.   So this is certainly different for me.

And the danger is that I could be so weakened buy this, that my body would have a much harder time dealing with the transplant.

But there is a miracle drug called Milrinone, that is dosed out through a small pump I can wear in a fanny pack.  This medicine will be constantly fed into my body via a semi permanent IV line (call a PICC...Peripherally Inserted Central Catheter).
I'll get that placed in a couple weeks, in mid September, once I am about 6 weeks out from the ICD placement I had on August 5. So a few days in the hospital to make sure everything is working as it should,  and then I will have a home health nurse come an check on it once a week it sounds like, and supply me with more of the drug...and batteries for the pump.  Batteries are important!

I've heard great things about this drug, and hopefully it will give me the energy to at least maintain the weight and muscle mass I do have until I get the call.

Oh, and I got the letter in the mail officially stating I am listed for transplant, at a Status 1b.

Have a GREAT DAY everyone!

Weighty Issues

Today's entry is going to be pretty short.

I had a pretty good bout of the stomach flu yesterday and just finally getting my appetite back.  The docs constantly tell me to keep track of my weight.  I used to hover around the mid 180's....now I hover around 170,  but in past couple days I've dropped 4 lbs.

Sudden weight loss (and weight gain, for that matter) can be one of the signs of heart failure, but I am hoping I'm a couple extra protein shakes away from being back to 'normal'.

I have my first appointment tomorrow since being placed on the list.  So we'll see what's up.  Hopefully it's nothing to be too concerned about at this point.

Being able to read the signs and symptoms of heart failure takes some getting used to.  I don't want to cry wolf, but I don't want things to get out of hand.

Have a GREAT day everyone!

Day To Day Living With Heart..Failure

First of all, let me say flat out, I hate that word: Failure.  Ugh.  Even worse: Heart Failure.  Double Ugh.


Sometimes I feel like saying UP YOURS medical professional.

My heart may be not quite up to snuff these days, but it's done a REMARKABLE job of getting me this far. I found a site that estimates how many heart beats I have had since the day I was born, and for me that number is:


1,695,879,288!!  (You can check yours too, here:   Heart Beats and Breaths Since You Were Born)

So that's not bad for a supposed heart FAILURE.

Yet I see HEART FAILURE on just about every pill bottle and medical form that comes my way.  And it seems like it's on the tip of the tongue of just about every doctor I speak with these days.

HEART FAILURE HEART FAILURE HEART FAILURE HEART FAILURE HEART FAILURE

It gets kinda old. I think I might ask the doctors not to say that around me.  I'll probably get the deer in the headlights look, and this may be silly perhaps, but who, or what, like's to be called a failure??
                                                                                 

heart MALFUNCTION    heart BREAKDOWN    heart DECLINE

        heart GIVIN' ER ALL SHE'S GOT JIM 

Anyway, day to day living is getting more and more challenging.  Maybe part of it is the recent heat wave of shorts we've had here in Iowa.  And it's not the heat so much, as the stinkin' humidity.   Thank goodness for air conditioning.   But even in the air conditioning I am super tired.  Slept almost 12 straight hours last night, got up, had a bite to eat, and slept another 3.  And it's deep, dead to the world, sleep.  And even now I feel like I could sleep 4 or 5 hours more, no problem.

That's the biggest symptom for me right now, is this nearly constant, debilitating fatigue.  And it gets worse if I try to actually exert myself.  Like empty the dishwasher, or climb a flight of stairs.  I just get out of breath so quickly(dyspnea), and my heart starts to feel like it might come out of my chest.  And that feeling is kind of scary at first, but I am used to it now...which is weird.  I do a lot of sitting on the couch these days...and that's not like me.

And I do seem to be coughing more, for no good reason.  And my legs hurt some times.  Both symptoms getting worse, almost daily it seems.

But the good news is I've really never had chest pain, and remarkably I don't seem to have any of the fluid retention that is common in heart failure.

FYI, I am currently classified with Class III heart failure, but I have to be darn close to Class IV.

Class	Patient Symptoms
Class I (Mild)	No limitation of physical activity. Ordinary physical activity does not cause undue fatigue, palpitation, or dyspnea (shortness of breath).
Class II (Mild)	Slight limitation of physical activity. Comfortable at rest, but ordinary physical activity results in fatigue, palpitation, or dyspnea.
Class III (Moderate)	Marked limitation of physical activity. Comfortable at rest, but less than ordinary activity causes fatigue, palpitation, or dyspnea.
Class IV (Severe)	Unable to carry out any physical activity without discomfort. Symptoms of cardiac insufficiency at rest. If any physical activity is undertaken, discomfort is increased.

From the NYHA (New York Heart Association Functional Classification...widely used)

Bottom line, it is what it is.  I try not to fret about it too much.  But I have had to learn to roll with the punches, and do what I can, and only what I can. Which is very hard for me and my stubbornness, cause I really don't like to at least not TRY to do the things I used to be able to do.  But I increasingly pay the price for not accepting this new 'normal'.  And I understand and accept its probably going to get worse before I get the call.

So now, I'm going to go take a nap, and try to recharge.

Make it a great day everyone!

How I Got Here...At Least Part Of The Story

That exact quote is on our fridge right now.  Has been for months, well before I was, for sure, going to be on the list.  I look at it every day.  A gentle reminder that yes, this IS worth doing.

You know I will be honest, and admit I have known the need for a transplant...someday...was a probability, perhaps even an inevitability.  But it hasn't really affected me much over the years, and while, again, it has been in the back of my mind for the better part of my adult life, it's sooo weird to think that 'someday' is here. Someday is right now.  

As I look back over the past year, my whole life really, I am in genuine awe of just how much I have been challenged with, endured, and overcome the span of those 40 some years, and with amazing success, if I do say so myself. And I don't say that to brag, but holy crap.  If literally hundreds of events didn't unfold just right, at just the right time, and close to perfectly...I wouldn't have made it even half this far.

Let me explain,  and this might get a little long winded, but at least I'll stick to JUST my heart this time.  I'll save my brain, my blood, my liver, and my colon for another post.

So I was born with a rather complex heart defect called Transposition of the Great Arteries.  It was almost a 100% guaranteed death sentence for babies like me, the cyanotic, or so called 'blue babies', born even just a few years prior to 1969, when I arrived on the scene. Sent home as a seemingly happy and healthy 7 lb baby boy, my parents quickly discovered that, even at 2 or 3 weeks old, my lips, fingers, toes, and even around my eyes, would turn blue..almost a purple plum-like hue.  And even though they had no idea what Transposition of the Great Arteries was at the time, they knew something wasn't quite right.

You see, in normal hearts, blood that returns to the body goes through the right side of the heart and pulmonary artery to the lungs to get oxygen.  The blood then comes back to the left side of the heart and travels out the aorta to the body, oxygenating the rest of the vital organs and the head, torso and extremities.

In TGA, the blood goes to the lungs, picks up oxygen, returns to the heart, and then flows right back into the lungs without ever going to the body.  Blood from the body returns to the heart and goes back to the body without ever picking up oxygen from the lungs.

The only thing that saved me (as well as the other 'blue babies') during those first few weeks and months was a hole in the heart, within the chamber walls, that allowed at least some oxygenated blood to mix and get sent out to the body.  

So as I mentioned the prognosis for babies like me was not good prior to about 1965.  But new surgical techniques were just beginning to be attempted and perfected throughout the world and remarkably, at a hospital near me, in the middle of nowhere Iowa, at The University of Iowa Hospitals and Clinics.  These techniques were still incredibly risky, but as the doctors told my parents, it's the only hope he's got.  20% chance of survival to 3 years, even that might be optimistic, and the reality was, I might not even make it off the operating table.

But my parents and the doctors thought it was worth the risk, given the alternative of almost certain death and I was given a chance.  Over the next two years, surgeons would skillfully craft my heart, then the size of a strawberry, and the surrounding vessels into somewhat of a makeshift, redesigned, modern marvel of medical advancement and surgical prowess.   My tiny heart and body responded well, to say the least.  And now 44 years and 10 months, I am one of the longest living survivors of of these pioneering techniques.

The first of those pioneering open heart surgeries was performed in 1970 when I was 6 months old, called the Blalock-Hanlon procedure.  Subsequently, the Mustard procedure, performed in 1972, gave me, and now thousands of kids like me, a real honest to goodness chance at a relatively normal life.  

And I absolutely enjoyed a relatively normal life.  I did well in elementary school and high school, especially academically, and was able to keep up with my friends with almost no limitations.  I was never a runner, and couldn't play contact sports, but I found other avenues, like golf and cycling, that allowed me to not just survive those years, but to thrive as well.  I was actually 'in shape' in my late 20's and 30's.  Always a bit thin, but fit, and that was OK with me and with the doctors.

I did have a bit of a hiccup though in my mid 20's and started to slow down quite considerably due to poor heart rhythm, a side effect of all the surgeries and the hundreds of stitches in and around my heart.  So I was implanted with a cardiac pacemaker in 1995 and quickly picked up steam once again.  I was able to finish college, graduate, find meaningful employment, have friends, find love, have a son, have a lot of fun and laughs, and become a real contributor to the vitality of the community.   95% of the people in my life never even knew I was born with a heart defect, let alone had all those surgeries and a pacemaker.   And the ones who did know, didn't seem to think it defined me or limited me much at all.  

Well fast forward another 20 years to last summer, when I was 43, and things really started to change for me.  I love, love, LOVE playing golf and could always make it around 18 holes no problem.  But during a round in September, I remember just hitting a wall, at about the 12th hole.  There was just nothing left in the tank. Nothing. I thought maybe I was just coming down with a late summer cold or something, and thought I would be back up an at em in no time. 

But at my next scheduled heart checkup the docs noticed my heart function had begun to decline somewhat, and they wanted to start monitoring me a bit more closely.  And rather suddenly, I was starting to have a lot of trouble making it though the day.  I would become so physically exhausted that the only thing I could do was sleep. I was fortunate that I was able to afford to take some time off work, hoping to build up my stamina and strength once again, and come back good as new.  But unfortunately that has not happened.

After some more tests,  I was told it was time for me to think about a heart transplant.  That was February 12, 2014.  10:17 am.  

Over the next several months, right up to last Friday when I was placed on the list, my heart, body, and mind were put though the proverbial ringer.  So much testing goes into qualifying a person for the list, it's just amazing....and something I never really even considered.  Remember I mentioned in an early post, that human donor organs are an incredibly valuable and coveted resource, and the goal for the recipient is to be as healthy as possible going into a transplant.  Do in large part because the transplant operation itself is so traumatic to the body, and the anti-rejection drugs are so powerful, the body really doesn't have the ability to put on a good fight on more than one or two fronts.    And some folks, sadly, are TOO sick to actually get an organ, because their body would simply not be able to withstand the trauma.

But luckily that isn't me, yet.  And hopefully I never get too sick to still be a viable candidate, but it is a slight possibility.  The great news is I'm relatively healthy all things considered, the rest of my body is good to go.   I got a brand new updated pacemaker/defibrillator, implanted just 3 weeks ago as a preventative measure to keep me alive in case my heart goes into a crazy rhythm and until a donor heart becomes available.   And while I increasingly have episodes where I get extremely tired, especially upon exertion of any kind, I am still able to be mobile, take care of my self, eat well, and bottom line, I am currently a really good candidate for a new heart.  Or at least as good as I can be.  And for that I am proud and humbled at the same time  

For all of this heart stuff really, I have always been quick with a smile and a kind word, for the doctors and for those who care for me and about me.  Modern medicine gave me a life worth living, and I feel like I owe it to all the astoundingly brave and talented doctors, nurses and support staff, as well as all those "blue" babies who came before me, and to those who still today are born with this same defect, to never, ever give up. Period.

Because it IS worth it, even it is going to be the hardest thing I've ever done.   I always knew I was somewhat special, and maybe walked around with sort of an internal swagger and confidence.  Maybe not so much because of the defect and the surgeries, but because of my infectious, contagious optimism and positive outlook on my health, and on life, in general.

I'm so excited to be here in this position. Right here, right now.  I know that the future is bright for me.  I have world class doctors at a world class medical facility just waiting for my donor heart to arrive.  I have family and friends from all over the world wishing me the very best, and I am loved beyond anything I could ever dream of.   That all makes it worth it too.

We'll get this little heart transplant thingy out of the way, and I'll be back on the back 9 in no time.

Have a GREAT day everyone!  

The Phone Is Always On

I could get THE CALL any time from here on out.  Today, tomorrow, in three weeks.  This Chistmas or Next July 4th.  And the ultimate reality is, unfortunately, the call may never come for me.  But still I need to be ready 24/7/365.

Human organs, especially the heart, are an extremely precious resource, and extraordinary efforts are made to ensure each organ has the best chance of helping the recipient.  Most folks only get one chance, and some never get a chance at all, and the chance of rejection is ALWAYS there, so this HAS to be done right.

A ton of work will go on behind the scenes to get the donor heart matched to my own body.  I read where as many as 100 people are involved in the procurement of a donor heart, and subsequent implantation into the recipient.  Blood type is just one of many factors that goes into determining a suitable match.  Also important are tissue type, the overall health of the donor upon his or her passing, my height and weight as well as the donor's height and weight, my medical urgency, and my time on the waiting list.  For me the official clock started ticking August 22, 2014.

But once the medical team makes that determination, that I am indeed the best match for that heart, they will move heaven and earth to get me to the hospital as quickly as possible.  They have my cell number, my girlfriend's cell number, my mom's phone number.  And I will get a pager.  And it's my understanding that if they really can't get a hold of me within a certain amount of time, the police will try to hunt me down.  Maybe they even call the fire department.  Don't quote me on that one though.

Luckily I live 10 minutes away from my transplant center at the University of Iowa Hospitals and Clinics so that shouldn't be a huge obstacle.

But we've started to watch the local news from a slightly different perspective.  Sadly, hearts usually become available as a result of some unforeseen, traumatic, tragic event.  Car accidents, hunting accidents, motorcycle accidents, construction accidents, farming accidents.  Even suicide.  It's still a bit daunting for me to think something really bad is going to have to happen first, before a heart becomes available.  But that's just the way it is.   Still with each news story I listen for details of the victim.

 Are they they relatively the same age as me? Same body type?  Same blood type?  We're they a registered donor, and will the family actually honor those wishes?

And of course a lot of those details are never revealed in a 30 second news spot, but still I wonder.  And I wait.

And by the way...my 'from the hospital' ringtone is the Mission Impossible theme song.

LISTED!

Two days ago, Friday August 22, 2014 somewhere around 3 pm,  I was placed on the list for a heart transplant.  Hole E Cow!  What an amazing, sobering, surreal, unbelievable feeling.  It's been life long journey to get to this point, especially gaining momentum this past year, but to actually be on THE LIST... well it almost takes my breath away with the enormity of it all.

First thoughts are "Yeah for Me, now I have a chance, FINALLY, at a new start in life."  And "Drat, somebody is going to have to sadly, maybe even tragically, pass away, to give little ol me a chance to live beyond the next however long."   Is that fair?  Is it right?  Is it weird that I am not COMPLETELY freaked out by all this?  A lot of questions, but hopefully a lot of answers that work for me.  And maybe others too.

One of my guiding principles is this:  I think in the midst of a lot of trials and tribulations in life we worry about how events will unfold a whole lot more than we should, and when the... STUFF...actually happens, it is never really as bad as what we feared it would be.  At least that has been my overwhelming experience in life.  And trust me, I have been through A LOT of nastiness, health wise, in my 44 and a half years.

And I guess that's my mindset right now.  Life is one big adventure.  And why not try to enjoy this ride as much as I can, and maybe share my insights with others. Offer a little bit of hope and encouragement along the way, and make the absolute best out of the situation I find myself in.

The support and encouragement I have gotten thus far lets me know loud and clear that I am not alone. According to organdonor.gov, someone, just like me, gets added to the list every 10 minutes!  Now granted, that's across all organs: hearts, livers, lungs, etc.  But still, EVERY 10 MINUTES!  And as of today 123,312 people are waiting for a chance at a better life.  One Hundred And Twenty Thousand Plus!!  That's enough to fill your average football stadium twice over.    Sadly an average of 18 people will die today waiting.  Waiting for the gift, the chance, the new start...

So I guess the most important message for this very first blog post is please, please, PLEASE consider organ donation. Talk to your family, talk to your friends, do some research, search your soul.  But I sincerely hope you really do decide to become a registered organ donor.  One Donor can save 8 lives!! Maybe it will be mine someday.  Or your neighbor, or your cousin, or the guy at the gas station, or more than likely it will be a complete stranger.   But talk about leaving a legacy!!   I have been a registered donor since I was 16, as soon as I could get my drivers licenses.  And I did that at the DMV, but now it's even easier to sign up....just follow this link. 

Organ Donation Registry

That will take you to OrganDonor.Gov and you can click on your home state and sign up.  Easy Peasy. Keep in mind, it's also important to:

* Designate your decision on your drivers license
*Tell your family about your donation decision
*Tell your physician, faith healer, and friends
*Include donation in your advance directives, will, and living will

 I do hope you will join me on my journey.  For me it's very therapeutic to share my perspective on things, and I promise in the coming days I will add much more content, and share more of my background and the story of exactly how I got here.

Make it a GREAT DAY everyone!