post-transplant UPDATES
04-18-09 8:30 PM - I think perhaps this has been the toughest week we've experienced in the days since transplant. Emotions ran high throughout the week and it was a struggle for Kelli to lift herself from the fast downward spiral into depression. Many factors contributed to this emotional roller coaster ride. While I was uncertain as to what I could do to help her through this, I lent my ear and listened as she began to share the depths of her agony and sorrow.
I decided the only way I could relate this in a way that would allow you to fully appreciate and understand to the best of one's ability is to attempt to draw you as the reader into this story personally. So I once again invite you on a walk into the very heart and emotion of your own life.
Before we begin, take a moment to gather into your thoughts all the people you hold most dear in your life. Gather up also some of your life's most precious moments, fun times spent with friends and family, accomplish-ments, even regrets of unfulfilled dreams, bring these too. Let your mind embrace these images and then consider all these things which you will see have taken years, even decades to experience and compile into the story that is your life, but as your recall them each in clear detail, it seems as if each event happened just "yesterday". The reality of life's brevity settles in upon your mind and you sigh with a longing sadness to perhaps change certain things, or take advantage of certain missed opportunities, relationships you left undone, those "if I had only..." moments in your life.
As you let these things rise to the forefront of your mind, let's begin our walk through the story of your life.
You have suddenly found yourself ripped from the routine of your daily life and have been bluntly and traumatically brought to the reality of an illness you had no idea you had. The doctors tell you that your heart is damaged and weak. For a moment, you attempt to console your fears and think that the doctors, knowing what's wrong with you, can fix you. But this is not the case. They inform you that your heart is beyond repair and the only hope for your continued survival is a heart transplant.
Stop here for a moment. Really let that thought sink into your mind. You have just been given a possible death sentence. You have just been told - your heart, the heart you were born with, the heart that you expected to beat within your chest for a good 70, 80, 90 years can no longer keep you alive.
What do you do now? Where do you turn? What will this mean for your future? Will you die? What about your family? Is this the end? Will you get to see your kids grow and mature? Will you get to see your grandkids? The emotions explode within you. The tears flow from your eyes until you have cried yourself dry - there are no tears left, just dry, burning red eyes, your cheeks are streaked with the tracks of your tears, your nose, red, your mouth dry. You're emotionally spent.
After this brief but heart wrenching, fear invoking barrage of anxiety riddled questions, you catch your breath and focus. First you need to find out where to begin. You make an appointment to see the specialists to whom you were referred.
"Heart transplant..." These two words resound over and over again through your mind. You are trying to comprehend it; get your mind around it. Will you be normal afterwards? What will change about your life? How long can I expect to live after transplant? Will you live long enough to see your kids grow up; your grandkids? You research heart transplants on the internet and find the statistics fill you with fear and immediately you wonder if it's worth it?
The statistics say life expectancy ranges from 5 - 20 years! Of course your focus falls on the immediate - 5 years! That's not very long. Then you realize that neither is 20 years! You think to yourself that maybe you should cash it all in now. Is it worth going through surgery to buy just a few more years? Here come the flood of tears once again and you sink into the bitterness of depression. You sell out to despair and consider your life's end. Your kids will grow up without you. Your grandkids will never know you and will more than likely hear very little about you. All the things you wanted to do but put off believing that tomorrow will always come. But now, perhaps the tomorrows for you are numbered.
Suddenly, you snap out it. You realize that yes, it is worth it. One more day, one more year, five, ten, twenty, thirty - you want whatever God is willing to give.
Your first appointment with the specialist confirms your worst fears. Your heart is failing you - rapidly. The doctor tells you he suspects you will have 2 months to a year with your heart in the condition it's in. You are scheduled to meet with a transplant coordinator to discuss the procedure and begin to educate you and prepare you for what lies ahead.
Given the seriousness of your condition you are fitted with an external defibrillator vest. You are instructed to wear this device at all times. You can only take it off to shower. This device will continuously monitor your heart and should it stop, it will shock you back to life. While this is intended to provide you with some sense of security (and it does) you now begin to feel like a sideshow freak. You have to wear this light, but bulky and intrusive vest everywhere.
You are also told that if the device, which has a wired remote control monitor attached should alert you of an imminent shock - you must respond to it or be shocked and if you are shocked - no once can attempt to catch you or brace your fall as they would be shocked also. Now a new fear sets in. Will you get shocked? Is this thing reliable? What if it misreads my heart rhythm and it shocks me in my sleep? Will it hurt? Will I die?
You are also given a pager and instructed to keep it on your person at all times as this is how you will be notified when/if a donor heart becomes available to you.
Now your life has become inconvenienced by these two devices and you live in an elevated sense of expectation and fear that this thing is going to shock you and that it's really going to hurt. But, they did tell you it beats the alternative, which is an internal defibrillator implanted into a pocket beneath the skin with wires connected directly into your heart. So you deal with it and hope and pray that it never has to go off. You also live with the anxiety of not knowing when or if the pager will go off. Sheer torment and unrest to your soul.
You still can't believe this is happening to you. You're going to wake up in the morning to find that this was all just a really bad dream. But then you roll-over in your sleep and the remote control is pinned between your leg and the bed and you suddenly awaken to the reality that yes, this is real, your heart is failing you and this device that just pinched your leg might very well save your life.
So, it's true. Your heart is dying. It's been put into focus by a set of number for you. 2 months. That's eight weeks. Sixty days. Wow, you think to yourself, "I might only have 60 more days of life left. 60 days! Where do you begin to prepare yourself for the possibility that you may only have 2 months left to love your kids? 2 more months isn't enough time to grow old with your spouse and spoil your grandkids. But hey, the doctor did say maybe as long as a year right! But, wait, a years not very long either. This might be your last Christmas with your family. Your last birthday. The last time you will see the spring time flowers bloom. The last summer to spend creating memories to share with your family, with your kids. Again, a year is not enough time to grow old with your spouse; and still no grandkids to spoil.
Although you fight to be strong, the tears flow once again. Fear and sadness wreak havoc on your emotions. This just can't be happening to you. It's just not possible. They must have made a mistake. You force yourself to stop. You have to be strong. You have to hold it together so that everyone around you will be ok. You don't want to upset your family and your friends. You want to hold out a positive attitude so that no one else will feel pain and fear.
Next you find yourself meeting with a transplant coordinator who schedules the battery of tests that will evaluate your eligibility for placement on the transplant waiting list. She is compassionate yet honest with you about the tests, the procedures involved and gives you an introductory understanding of heart transplant surgery. Lot's of new information is milling around in your head and you are attempting to process it all.
Days later you find yourself admitted to the hospital for this grueling and seemingly never ending several days of testing. This is a physical exam the likes you have never experienced before. There is not one part of your body, internal or externally that is not tested. You are poked and prodded. Blood samples, test after test. X-rays, echo-cardiograms, stress tests, organ tests, tests for cancer and other infections diseases and on and on. You are even given a psychological evaluation.
After the tests are complete, you have to wait. Anxiety builds as you begin to wonder what happens if you fail these tests? But you know the answer to that question. If you do not pass these tests you do not get placed on the list and you will die. You find yourself once again on the emotional roller coaster ride. You ask yourself again, "Is it worth it?" Yes it is you tell yourself. You have to give this your very best effort - if not for yourself, for your family. You figure at least then, if you die, your family will know you did all you could do. `
Finally, the results begin to come in. Of course, they can't all just come at once so although you are thankful to begin hearing the reports and they are coming back favorably one by one - you can't stand the building suspense of knowing the end results. You fear that there might be one, perhaps a really important one that you will fail. This is almost too much for you to bear.
But, to your utter relief, all the tests come back good. You qualify for placement on the transplant list! You are overcome with joy and you are excited that you will soon be fixed. You'll get a transplant and life can go on.
Now comes the next step in transplant understanding. You are told your placement on the list is a status 1b, which means you are on the list, but not at the top because you are still ambulatory. You can still function and you are not being admitted to the hospital to await transplant.
Now what do you do. This illness has rendered you disabled. You had to resign from your job. You are restricted in your activity levels. You tire easily. Your blood pressure is extremely low and you fight dizziness and fatigue. All you can do is wait and pray that God will sustain you.
We are nearing a bench along our walk and we will pause here for a moment and sit to catch our breath. While we rest, revisit the events that we have just discussed as having transpired in your life. Remind yourself that everything you just experienced has taken place in just three short weeks. Three weeks ago you thought maybe you had a really bad flu bug. Today you have survived congestive heart failure and you are on a heart transplant waiting list. You are married to a shock collar and a pager. Life as you knew it three weeks ago has changed. But how it has changed remains unclear and uncertain as your life hangs in the balance between two months and a year left for your own heart to sustain you while you hold out on the unpredictable hope that a match can be found between your blood type and that of an acceptable donor heart.
To be continued...
