Rejection Sucks: the Transplant Journey Continues

After almost 2.5 years on the transplant list, we are finally at a point where we should start "planning" for this surgery. I will soon be admitted to my transplant hospital to have an IABP placed. Once placed, I will move from a status 4 to a status 2. I will have to stay in ICU at Integris until a donor heart is found. This could take weeks or months, but we strongly feel this is the right decision. While we will certainly look back and say "that was hard," it is not a decision we will regret.

Backstory: I am adopted and have no family/medical history. Six and a half years ago, I had my first heart attack. I had stents placed, but continued to have heart attack after heart attack. About a year into this journey, we discovered that I have Familial Hypercholesterolimia. FH is a genetic condition that in simple terms, means my body can not filter out the bad cholesterol. Having lived the majority of my life not being treated for such an aggressive disease, my heart had taken a huge toll once I was finally diagnosed. In the past 6.5 years, I have had 2 stemis (larger of the heart attacks), dozens of non stemis (smaller of the heart attacks), 53 heart catheterizations, 20 cardiac stents placed, 3 port surgeries, ICD placement (internal defibrillator) and have needed a hysterectomy. I have spent months worth of time in the heart hospital and taken more ambulance rides than I can count. FH has caused cardiomyopathy, end-stage heart failure, coronary artery disease and I experience ventricular arrhythmias, which are fatal (the reasoning behind the ICD). I have chronic uncontrolled angina due to small vessel disease (small areas of my heart that are too small or have hardened and are not stent friendly). My circumflex is occluded and non-functioning and my LAD (yes, the widow maker) is infarcted (dead tissue). I've had multiple blockages in the distal section of my RCA and it's following in line with my LAD. Most recently, I have been experiencing neurocardiogenic syncope- aka I pass out. In my case, it's a result of intense pain. I have missed birthdays, holidays, family/friend events, my son's last days of school, award ceremonies, you name it- I've probably been hospitalized through it. While transplant has always been a dreaded word to hear, it's where I am and I know it's what I need.

How These Funds Will Be Used: Our out-of-pocket expenses are $2,500 and should a heart become available before those are met, that is what we pay. My husband will take a leave of absence (likely 2-3 months), as his presence is required for surgery and after surgery. That will leave us with zero income while paying the COBRA price to maintain my health insurance through his employer (approximately $2,500 per month) and still with our regular expenses plus all of the unknowns and unexpecteds that blindside you when your plate is already full. He will need lodging and meals while I am in the hospital and we will need to stay in OKC for at least a month once I am discharged. My prescription costs post transplant are $260 a month and the hospital encourages us to have at least 6 months worth of prescription money available when I am discharged (this amount is for a lifetime to prevent serious rejection). Our expenses post transplant will continue to be difficult. The year after an organ transplant is still considered a very sensitive time and often comes with bumps such as rejection. We are told to expect rejection, and while it is generally manageable, it will require more hospital stays. One member of my transplant team is a social worker who very strongly encourages fundraising. The costs are phenomenal and no one should be left with mountains of medical debt in order to save their life and unfortunately for me, this is a life saving procedure.

Please only help if you are able (this will stay active before, during and after transplant). A share of this site is as valued as a donation. Anonymous donations are certainly respected, but my family would love to thank you.

**If you are a new friend, allow me to introduce myself. I am Gwen and I live in Sperry, Oklahoma (originally from NJ), with my husband, Waylon, and our 11 year old son, Noah. After my FH diagnosis, we immediately had Noah tested, too. When 1 parent has FH, there is a 50 percent chance that it will be passed along to their child. Noah also has FH and is closely monitored by a pediatric cardiologist. Early detection of FH is absolutely critical. It will not only improve your quality of life, IT WILL SAVE IT. When it comes to FH, I am an open book. Share your story, ask me questions- check your cholesterol!