So usually when I write a post I spend a couple days revising and editing so it becomes a little easier to read. Well this time I'm just typing one out quickly because apparently I could get a new heart at any moment.
I just had to make one of the most difficult and life changing decisions I have ever needed to make. After dinner around 6pm I received a call that Duke had found a heart for me. I had to be at the hospital in an hour from that call. I had a panic attack and could not decide what to do for a few reasons.
The obvious being that my life would be changed forever. I will have all new health issues to deal with, a very long recovery if I make it through surgery, and some crazy ass scars (which I keloid badly so scars don't look great on me).
Another reason is because I get very stressed with life knowing bills will still come in, taxes still need to be filed, etc. What will happen with my teeth as I am only a year out from surgery and still in retainers. Simple things like that cause me lots of anxiety, having to relinquish control and put trust into someone else to keep my life organize. Running a household is tough even with the both of us and thinking Sterling will be in ICU taking care of me and trying to take care of the house and bills just makes me unnerved and worried. I know he can handle it, that is just a lot to put on someone's shoulders.
The other reason is that all week I had been planning a surprise wedding for Valentine's Day. We were planning to get married this summer in Charleston and of course had to cancel those plans once we found out I was in heart failure. Sterling has been wanting to make it official for quite some time now. Knowing that in order for him to be able to make decisions regarding my health we had to do this soon. We have never celebrated Valentine's Day so I thought getting married on this day would give us a reason and be an easy date for us to remember. I reached out on Reddit for a photographer to help us out free of charge and I found one, I reached out to NextDoor for a wedding dress and someone provided one free of charge, I also found a band to perform a few songs for us free of charge (Niito...they're amazing). I had a hair appointment, outfits picked out, ring bought, marriage license application filed and then a 4 course meal at a historic house having a Valentine's Dinner Evening Party. I didn't want all my efforts, and the surprise, and the money spent on clothes and dinner to go to waste.
I called my parents to help make the decision on whether I should accept the heart or not but they were in just as much shock as I was so it was up to me to decide. Sterling kept reminding me, that my worries were about superficial things that could all be taken care of. He kept encouraging me that accepting it was the right thing to do, that is in face why we are living in Raleigh to begin with. I had about 20mins to make the decision and when you're having a panic attack that time flies. My cardiologist called to give me a pep talk, and then eventually I listened to Sterling's rational mind. How he remained so calm and sensible in such a stressful anxious moment, I have no idea, but that is one of many reasons why I love him. He's the ying to my yang.
Although the decision to accept the organ was a tough one, one we weren't quite ready for, we made it. We packed our bag, made our calls, sent some emails and started on our way to Duke. 15 mins into the drive we get a call that the transplant has been cancelled. Due to privacy issues they are not allowed to give much information but I was told that the heart could not be transported safely in a timely manner which I believe to be due to the warm ischemia time. I'll explain...
I signed up for two new studies the other day which we knew meant I would get a heart much sooner, I was just not prepared for 3 days later. The first study deals with how hearts are transported using an OCS machine. Basically instead of putting the organ on ice, doctors are able to hook it up to this machine and pump blood and oxygen through it while also pacing it. It also allows a wider range to acquire hearts, up to 2500 miles I believe which more than doubles the typical range. This study was not that big of a deal so that was an easy decision to make.
The second study involves how hearts are procured. They are taking hearts from what they call 'DCD' donors. (Donation after cardiac death) This is where it gets a bit confusing and google will probably explain it better than me. But basically the heart keeps pumping even though the patient is deceased and then warm ischemia time comes into play (how long the heart can stay in the body before being removed for donation). 30 minutes is the timeline and based on the information provided they were passed that amount of time. More than 30 minutes they declare the heart to be unsafe to donate.
The rest of the world participates in OCS transportation and uses DCD donors, it is not something a patient has to decide upon and that is why I chose to sign up for these studies. The FDA is just behind the times regarding organ donation. Knowing Duke was only 1 of 3 schools participating in the DCD study and one being Stanford across the country, we knew I would be getting the call soon. But 3 days later!? Only 100 patients are part of the DCD study that began in December, and of those 100 only half are eligible for a DCD organ due to them needing a control group. It is a randomized selection and when I signed up I was randomized to be able to receive a DCD organ. This means I am in a very small pool of people to accept a DCD within a 2500 mile range.
It is very likely we will get the call again very soon. Although this was very dramatic and I think I experienced every emotion under the sun, it was a great trial run. Next time I get the call I will be ready and will hopefully be in considerably less shock. I'm shook, stunned, mentally exhausted and just trying to breath through this. Nothing about a heart transplant is easy, getting a new organ is very difficult on the body for it's entirety and extremely risky but I have to keep in mind I have no other option. My heart is failing causing the rest of my body to fail due to lack of blood flow and oxygen. We moved across the country for this and now it is all too real. I don't think you can ever be ready for such a serious life changing event but we will be as ready as possible.
It's happening people, it's happening. I'll continue to wait patiently and we still plan on marrying at the court house Friday unless we get THE CALL again. Onwards and upwards. Love you all for the continued support. And if you want to come celebrate our marriage this weekend in Raleigh come on up...it's obviously no longer a surprise!
gofundme.com/kiele
