post-transplant UPDATES
4-26-2009 6:15 AM - When I left you last, you had tired from our walk and had paused to rest for a while. You've had a lot to take in these past three weeks and it has overwhelmed you. In three weeks time you have discovered that you suffer from a condition called "idiopathic dilated cardiomyopathy" meaning you have an unknown disorder that has caused your heart to enlarge and not pump properly. You are told that your heart has an "E.F." (ejection fraction) of only 9%! You have been fitted with a defibrillator vest and given a battery of tests to determine your placement on a heart transplant list. You have been placed on a transplant list at status 1B, told that you have 2 months to 1 year left with to live with your damaged heart and you are sent home to resume your life as best you can, limiting your activities to only the necessities and restricting your diet to a very low sodium intake, and wait for a phone call telling you that you have received a donor heart. You are also scheduled for a routine series of checkups by the transplant team to monitor your condition while awaiting transplant.
Having been told that one of the post-transplant conditions you will have to deal with will be an immuno-suppressed condition to keep your immune system from fighting against and rejecting a new heart. Therefore, your doctors have encouraged you to begin to practice good hand washing and sterilization habits. Suddenly, at every possible location in your home sits a bottle of liquid hand sanitizer. You house is scrubbed top to bottom and is kept sterilized on a continuous basis, (which isn't a bad thing but you have developed a complex that you have turned into a "germ-o-phobe" which you have, but only out of necessity for preservation of life.)
On top of fighting your continual fatigue, shortness of breath and poor sleeping, you have to contend with your less that comfortable, defibrillator harness. You long for the days when taking a shower was a simple process of taking off clothing and stepping into the shower, drying off, redressing and going on about your way. Now it's such an inconvenience you fight the urge to go as long as you can tolerate without showering because you have to not only take off this harness, but you have to change the harness out, (you have two so you can wash one and wear one) which requires re-routing all the electrodes to their appropriate places and inputting the proper communications to the device so that it continues to do what it is suppose to do.
So, once you have removed the harness you feel the necessity to rush through your shower in case your heart goes into an irregular rhythm while you are not wearing this vest and you die in the shower. You realize that there is no point in your life anymore where you are truly relaxed, where your mind isn't troubled with anxiety and fear over the uncertainty of your life.
You have finished your shower and need assistance reconnecting yourself to your harness. (You eventually will become proficient at this procedure by yourself, but it takes a while. Seems like you need about six hands to put this thing on.)
Now you venture to the kitchen to enjoy a bland, no flavor meal and you covet your bottle of water as you are also restricted on the amount of fluid you can have in a 24 hour period. Suddenly, emotions erupt again and tears well up in your eyes from the frustration. You can't even randomly grab a glass of water with out counting how many ounces this drink will bring you to for the day. Your family, while supportive, hasn't yet joined you in sharing your restrictive diet requirements and you see them eating all the stuff you once enjoyed and drinking all the flavorful soft drinks and juices you once drank without thought and indulge a moment of bitter envy and resentment toward them for their lack of compassion towards you (even though it's totally unintentional on their part, you still can't help feeling like this.)
Night time comes and the family winds down for bed and you don't even want to face sleep, because it is illusive to you. You are tired, but you can't sleep. Your mind is continually at work trying to understand and deal with your life. You struggle to maintain your prayers, holding out in faith that God will see you through this.
You can't even just get into bed like "normal" people. You have to prop yourself up with a pile of pillows and sleep on your back all night long to insure optimal breathing. You also suffer from severe night sweats (a symptom of heart failure). Again, you deal with uneasy emotions as you lie awake in your agony and despair, longing for rest and comfort, and your family sleeps the night away totally unaware that you have watched the minutes pass by into hours, catching only but a few moments of intermittent sleep throughout the night, yet you arise with the household and see everyone through the morning routines.
Morning routines! Even this is different. To add insult to injury, it has been decided by your family, that you are not well enough to be left alone during the day, therefore, you have to ready yourself with all your encumbrances and be taken to your parents house so that they may "baby-sit" you for the day in case a medical emergency should arise. You can also, no longer drive your car! You've been given strict orders from your doctor regarding this. They don't want you driving and going into heart failure or being shocked while driving down the road and causing an accident, injuring yourself or others.
Yet, through all this, you endeavor to maintain an outward appearance of pleasant reassurance to those about you that you are persevering well; making sure that you attitude is always on display with a positive outlook. Everyone around you can't believe that you are in the condition you are in, yet for all appearance sake, you look completely healthy and happy. Little do you realize at first the toll that this juggling act takes upon your well being. You work so hard at not appearing ill that you wear yourself down physically and emotionally and you long to find a moment in the day where you can be alone for just a few minutes and cry away the frustrations of the day, release these pent up anxieties and fears that replenish themselves with the rising of the sun each day.
Your next checkup with the transplant team has arrived. Anxiety fills you as you hope and pray that your condition has held together and you have not worsened since the last visit. You go through the standard battery of questions that they ask to make preliminary determinations of any changes that have occurred in your health. Your answers are the same as last time. (You find yourself gazing at this huge three-ring binder that the coordinator is using to record your answers! This thing is HUGE! And it all has to do with you! This whole big binder has your name all over it! )
Next you are taking of a stress test, which you can't even believe that they would subject someone in your condition to, but they know what they are doing and they need the results for further diagnosis of your condition, so you happily submit and exceed their expectation with your results.
As this checkup comes to a close the coordinator reveals to you a certain finding in your last blood tests. You already know that you have a blood type that is hard to match. You are now told that your blood contains certain anti-bodies that will increase the difficulty of finding an acceptable match. Not only will blood type have to matched, but these anti-bodies will also have to be cross-matched to a donor. So just because a donor heart matches your blood type, doesn't qualify it as an acceptable heart for you. It also has to have the same anti-bodies as your blood has!!!!
They tell you that you will only be allowed to "fail" three cross-match attempts and then they will admit you to the hospital for a procedure known as "plasmapherisis"! Plasma-what! They explain to you in basic terminology that this is a procedure where you will be hooked to a machine that will draw your blood from your body, clean it and put it back in to your body, thus removing these anti-bodies and making it easier to cross-match your blood with a donor. This procedure takes seven days!
It is your hope that an acceptable donor match will be found without having to undergo this plasma-whatcha-ma-call-it, blood cleaning machine. So, now you have one more thing to worry about. Even though the coordinator explained the anti-body situation to you - your mind still wrestles with just what exactly that means - is there something else wrong with you? Why do you have these anti-bodies? Nothing can just be "easy" everything has to be complicated, one problem opens the door for another problem. Oh, well, such is your life - you're strong, buck up and deal with it you tell yourself. Tomorrow is a new day. (If tomorrow comes you tell yourself). Tomorrow you will get up, take your medications, weigh yourself, check your blood pressure, shower, adorn yourself with your shock collar, go to your babysitters, sit, watch tv, eat some bland, tasteless pseudo-food substance, drink your allotted fluid intake, go home, do what you can to make yourself feel as though you are still a part of your household, then as the day ends, climb onto your stack of pillows and stare at the read neon numbers of the alarm clock until they blend together into a blurry red blotch and you drift to sleep - but just long enough to awaken and find the numbers have refocused to reveal that only ten minutes have passed. Repeat again throughout the night until finally the morning sun begins to peer through the slats of the mini-blinds, dispelling the darkness and causing another new days routine to break forth!
To be continued....
