Thanks for joining me on this ride. I warn you, it’s a doozy.
If you’re going through hell, keep going.
— Winston Churchill
For those of you who don’t know me, let me tell you a little bit about myself. I’m currently Twenty-Eight years old. I have a Bachelor’s degree in English and Writing, with experience in Education and Theater. I’m a caucasian male, brown hair, brown eyes, about five feet and six inches tall. Five and three-quarter inches if you really want to get technical, but just let me have that quarter inch. It doesn’t matter to you, but it kind of does to me.
You don’t really need to know what I look like, though. That isn’t the point of why we’re here. Let me move on to that.
I may be in my late twenties, but people say I’ve lived through as much as an old man. My older brother jokes with me that I simply am an old man because of some of my habits and mannerisms, but again, not the point. The reason people say that is because I’ve been through so many medical woes in my lifetime that it’s amazing I’ve packed them all into less than thirty years. It would be hard to list all of them in detail, but I can give you the short version, in an attempted chronological order:
— Diagnosis Mid-1994: Dilated Cardiomyopathy (Heart Failure)
— Operation August 1996: Heart Transplant (HTx)
— Immediately After HTx: Stroke
— Occurrence Shortly After HTx: Bout of Rejection
— Chronic Condition After HTx: Seizure Disorder
— Occurrence Mid-2002: Second Bout of Rejection
— Diagnosis July 2012: PTLD (Post-Transplant Lymphoproliferative Disease)
— Morphs into Diffuse Large B-Cell Lymphoma
— Treatment Period July 2012–April 2013: Chemotherapy
— Operation May 2013: Intestinal Resectioning
— Occurrence May 2014: Relapse After Dormancy Period
— Treatment August 2014: Clinical Trial (Fails)
— Treatment Period September–December 2014: Chemotherapy
— Occurrence December 2014: Stem Cell Transplant
— Operation June 2016: Thermal Laser Ablation of the Right Hippocampus
— Brain Surgery to Eliminate Seizures (Initially Successful)
— Occurrence October 2017: Seizure Relapse
— Chronic Seizure Disorder Continues
This essentially brings us to now, June 2018. The lengthy periods of time in between various points on this list are when I was lucky enough to only need to be monitoring my conditions, but there otherwise are plenty of smaller events that happened over the course of the past two decades. It wouldn’t surprise me if I’ve forgotten a few major ones, actually.
Anyway, this is why we’re here.
I’m not here to write about my entire medical life, despite the fact that many have said I could and should write a book. I gave this list here for some background. At this point in time, I’m still dealing with the last point on that list — the chronic seizure disorder (since I don’t feel like having another hole in my head) — but that isn’t the reason for this blog, either.
In mid-April I was given another diagnosis.
I’m in heart failure. Again.
I have to get a new heart. Again.
I don’t know how long I’ll have to wait, but at least that’s all I have to do. The most important thing that had to happen for me to even have a chance at survival has happened.
I’ve been Listed.