Welcome! (Our Story)

Hey everyone! I created this blog in the hopes of having somewhere to document my feelings as I go through this journey of needing a second heart transplant. It will undoubtedly be just that – a JOURNEY. Ups, downs, highs, and lows are to be expected. In addition to having somewhere to vent and post updates along the way, I wanted to bring awareness to the immense need there is for organ donors, and hopefully also inspire anyone that may be facing this journey, or caring for someone on this journey as well. You can read a little about my story to your right in the “About Us” section. As it states there, I had a heart transplant in 2005 (ironically, exactly ten years ago this month) at the age of thirteen. I was born with heart problems that were inherited from my father, who has also had two heart transplants. The symptoms increased as I got older, and I was placed on the waiting list in September of 2004, waited six months, and received my heart in March of 2005. Long story short, I had several bouts of rejection – some minor, some severe – and never did come off many of the medications that are meant to be short term after a transplant due to complications I experienced. For the first year after a transplant, you basically live at the hospital. The doctors want to see you twice a week, with biopsies once a week. (Oh how I am so looking forward to doing that again! NOT.)  Those appointments slowly becoming farther apart as the first year goes on. After that, there are biopsies twice a year, and eventually you have one big annual appointment. At least you’re supposed to. I never made it to only having biopsies or angiograms once a year, because I would always get sick or start experiencing symptoms that made the doctors worry and want to check things out, just in case. I would go a couple months with things going well, and then have another set-back. Unfortunately, that never changed over the entire ten years.

Fast forward to now. For the past several months, I have been experiencing more and more chest pain and symptoms associated with the high blood sugars and diabetes that is caused by another one of the lovely post-transplant medications, also usually stopped shortly after the transplant that I am still on. I have just been feeling crappy, to put it simply. My doctors have found that I have CAV (Cardiac Allograft Vasculopathy) which is a type of coronary artery disease commonly found in heart transplant recipients, caused by the life-saving anti-rejection medication that we are on for the remainder of our lives after transplant. I have learned that CAV is present in 50% of transplant recipients, five years following their transplant. Unlike other types of coronary artery disease, this is not caused by unhealthy eating habits, high cholesterol, lack of exercise, or any of the common things you would associate with bad arteries. It is solely a side effect of the medication. Also unlike typical coronary artery disease that can progress over a matter of decades, CAV can present itself and progress very quickly – over years or even months.

For the past couple months, the doctors have been discussing our options with Curtis and I. They have now decided that because the disease is progressing very quickly and because of my symptoms, they want to list me for a second heart transplant. According to them, once CAV has fully developed, re-transplantation is the only option, as there are only certain amounts of medication that will prolong the narrowing of the arteries. Unfortunately, it cannot be reversed, and I am already on maximum doses of the medications that help with the chest pain. They have told me that because there are so many people with LVADS (Left Ventricular Assist Devices – a mechanical heart that helps pump blood throughout the body) on the waiting list nowadays, a person like me that is sick enough to be on the list, but stable enough to be at home could wait a year to even two years for a heart. Because of that, they wanted to get me listed before there was any possibility of me crashing, or becoming too sick to even be a candidate. This is all so shocking to me and is hard for me to wrap my mind around. I am glad they are thinking to the future, but to accept the fact that I have to go through this again, a second time, with this time being so much different now that I am an adult, I am married, and the responsibilities are completely on Curtis and I, has been the hard part. When the doctors first told me that another transplant was basically the only option, I was shocked. I just started sobbing. The biggest thing that has affected me is that I needed to know that this was nothing I had done or nothing I could have prevented, which they in turn did. They said this is 100% caused by the medication that I have been on. It was just so hard to accept and wrap my mind around, because I feel like I have done nothing but take the best possible care of Taylor’s heart, waking up every single day and thanking God for guiding his family to give me this amazing gift that has allowed me to experience ten wonderful years of extra time that I would not have had if it wasn’t for his family’s decision. I have absolutely only ever honored Taylor and have never taken a single day for granted. Regardless of what happens or when I do receive another heart, Taylor and his family will always hold an extremely special place in my thoughts, in my prayers, and in my heart. They are the reason I have made it to this point in my life and accomplished everything I have accomplished in the last ten years, and nothing will ever change that fact.

I have spent the last several weeks trying to come to terms with this and how much it will change Curtis’ and my life. I do know that if I continue to feel as I have been feeling for the last while, with anticipation that that will only become worse, this is what needs to be done. I do want to feel better. I do want to live, of course, and I want to have a quality of life that I can enjoy. Taylor gave me that and it has lasted ten years, and for that I am so grateful. I am only twenty-three years old, and have dreams that I want to achieve. The biggest thing is, I want to have a family. I want to be a mom, and I want Curtis to be a dad. I know I won’t be able to carry a baby, but there are other options. (That’s a story for a whole different time – I won’t get into that now.) But point being, there are things for me, and for us left to do. I know everything happens for a reason, and I know that with God, all things are possible. Knowing that God will never give me more than I can handle and knowing that I have the most supportive and loving husband is what is going to get me through. So, here we go!