Transplant.
The word by itself is scary, but when you add the word heart...heart transplant...it strikes fear to your core, because, let's face it, any kind of transplant is never good. Healthy people do not get transplants-sick people do...really, really sick people. And when they talk about a transplant and someone you love-someone who has always embodied strength and stability in your life-you can feel as your world slowly cave in, as a light somewhere inside of you flickers-waiting to go out. For so many, a transplant means hope. For my sisters and I, transplant meant an ending that none of us are prepared to face quite yet.
On April 26th, I went with my mother to Johns Hopkins Hospital in Baltimore, MD to see if she qualifies for a special procedure known as
ablation therapy that could potentially save her life. My mother suffers from a serious form of
ventricular tachycardia, and as a result she has both a pacemaker and defibrillator. As of late, her arrhythmias have been more chaotic, and the littlest things, like bending over or vacuuming, can cause an episode of irregular or fast heartbeat. They usually make her feel fatigued and faint, and often times she has to lay down. At their worst, the defibrillator will send a jolt to her heart in an effort to regulate her rhythm. Recently, these episodes have been more and more frequent, and she was beginning to feel like her medicine was no longer working.
For a long time she has been researching a rare heart condition known as
ARVD or
Arrhythmogenic Right Ventricular Dysplasia. ARVD is a genetic heart disorder that effects one out of every 5,000 individuals. It is the leading cause of sudden death in young athletes, but it can affect anyone of any age or activity level. There are several signs and symptoms: arrhythmias, syncope, heart failure, and sudden cardiac arrest.
Well, based on my mother's symptoms, and because someone had mentioned this as a possible diagnosis to her in the past, it was important to her that she meet with the team of specialists at Johns Hopkins who specialize in researching and treating
ARVD. She also wanted to have the genetic testing done, because if she did have
ARVD, then my sisters and I would also have to be tested for it.
We spent two days meeting with doctors, having some tests run, and attending a seminar for ARVD patients and their families. So, far her test results show that she most likely does not have ARVD. This is encouraging, because that means that what she has isn't hereditary. But, there are still so many questions like: What
DOES she have?, How do we make her feel better?, and What can we do to keep the possibility of a heart transplant a long ways down the road?
Well, she does not qualify for ablation therapy according the specialists at Johns Hopkins, but she says she is not going to give up. She plans to do more research into the procedure, and see if there is anyone out there who might be willing to perform the procedure on her. They also chose to switch her medicine around a little bit and we are all hopeful that such a small change will make a huge difference in how she's feeling everyday. As for the heart transplant, well no one is saying that
ISN'T a possibility, but unfortunately, she is saying that it is. After hearing a heart transplant specialist speak at the seminar we attended, I am now more aware of the signs and symptoms experienced by patients who need a heart transplant. Usually by the time heart patients need a transplant, they are looking at a one to five year life expectancy if they don't receive a heart. Wow. That information alone really put my mom and her heart condition into perspective for me. I think for the first time, I realized just how serious everything is. My mom could be gone by the time I'm 30. It's a frightening thought.
However, my mom has decided that she won't get a transplant when it's time. She feels that a heart transplant will not improve her quality of life, and that it will just elongate the inevitable. Most heart transplant patients end up in renal failure or with other complications, and in all honesty, that's not a great way to live your life either. I think her greatest fear is to have us, her girls, watch her deteriorate. She doesn't want us to see her weak and struggling. And in truth, that's my greatest fear too. I can't imagine watching my mother turn into anything, but the strong, independent woman she has always been. I don't want anything to diminish those memories. So, I can understand why she's chosen the path she has chosen. I don't like it. Not one little bit. And the Lord knows I haven't gone quietly, but in the end, it's
HER life. It's
HER choice to live it to her best ability, and in her opinion a transplant won't allow her to do that.
So, now we wait. She will continue to research ablation therapy, and we will pray that the changes made to her medication will allow her to feel better...more like herself. But, other than that, we wait. We embrace every moment, because in truth, I don't know how many more there will be. I can tell you it's been anything
BUT easy. The level of anxiety I'm feeling is like nothing I have ever experienced. I'm not sleeping. I hardly eat. I have terrible nightmares. I haven't been doing much homework, or focusing on much of anything for that matter. I am angry...
A LOT. I am sad...
A LOT. I am learning that this is so much more than being "stress out"...it's a battle. A battle I get up and fight every single day. Not just for my mom, but for my sisters, my daughter, and my family. I don't know why I feel responsible. I just do. I am like my mom: my natural instinct is to take care of people. To make sure that everyone is okay. It's just how I function, and I'm starting to think it's my coping mechanism. I know I'm...we're...going to get through this. I know that we are going to come out stronger, because you can either let the challenges in life make you frail, or you can let them make you as tough as nails. Of course this doesn't come naturally, especially when you feel so defeated. But, I am making the conscience effort everyday to let this make me stronger. This will not destroy me. I won't let it. And as long as I keep telling myself that maybe, just maybe, I will make it through.
Please don't feel bad for me, my sisters, or for my mom. In fact, she would
KILL me if she knew I wrote this. We aren't looking for sympathy. I'm just trying to process all of this, and like many of you, writing is how I do it. When I write about it, I am able to gauge where I am emotionally. If I can't write about it, if I can't find the words, I know I'm really struggling. But when the words finally form and black letters start to fill up the vast white space, I know I'm functioning again. I'm finally sorting through all of the emotions that course through me on a daily basis. Writing is how my heart heals. It's a soothing balm that fills every crack, and allows me to make it through one more day without it breaking. As long as I keep writing. As long as I keep putting it all out there. I think I'm going to be okay...or at least I hope so.
Unfortunately, because I was an education major when I got my associate's degree, I am lacking a few pre-requisite classes. This means I would either have to dual enroll for more than one semester, or drive over an hour a few days a week to take the classes I need. This is not plausible for our family at this time, and financial aid won't allow me to dual enroll for more than one semester, so I am considering transferring to a local private university. A private university is more expensive, but when you consider the gas I would spend to drive to the school where I am currently taking classes, and the extra cost of dual enrollment, it is probably the best option for me at this point. I am excited to see where this next leg of the adventure is going to take me, as well as the possibility to actually take my classes in an actual classroom next semester. I think this is going to be a good, positive change for me. But, for now I have every intention of enjoying the summer with my girl...starting today!
