June 20, 2020 Update

Today marks the 4 month mark since my transplant.  Not only that,  but it also marks what was supposed to be the weekend of our wedding.  A date that was already planned and set before finding out I was in heart failure and that Sterling and I needed to move back east for the transplant.

I had another biopsy this past Tuesday and everything looks good as far as functionality.  However, I did have low level rejection (Lv 1).  This is common in the first year but after having a couple biopsies with no rejection and being 4 months out, it does scare me.  I have been having a difficult time lately trying to fight through serious mental and physical fatigue.  It's tiring just to convince myself that I have energy to do something, and when I am successful I'm usually hit the following day with intense pain which includes joint pain, muscle aches, migraines, and zero energy to get out of bed; which is all the more defeating.  I seem to have about two good days a week at best on average.  It's frustrating and stressful and the medicines tear your body up, also both physically and mentally, especially the steroids.  There's not much positive I can say at the moment other than my husband is amazing at helping me in every way imaginable, oh yea and I'm alive.

Having an organ removed from you and then replaced by a stranger's is a hard concept to grasp, my body thinks so too.  I know I'm making progress as small as it may seem.  But even so, after a certain point it becomes very challenging to keep fighting just to stay alive.  I've been fighting with my health since I was a child, and I'm just tired and exhausted.  This is in no way me giving up, I'm just being brutally honest with myself and the world.  I don't ever photograph the bad days, so it can look as if I am doing amazing.  Nothing about this is easy but I ain't no quitter and I'll continue to put one foot in front of the other even if that's only every other day. As for now I continue my meds and go back for another biopsy in a month. 

The Covid-19 situation presents another roadblock into keeping a strong mental game.  It would be lovely and relaxing and a needed change of pace to be able to go to a friend or family members house for a nice conversation and dinner or go to a brewery or coffee shop to play a board game, or go down to the beach to celebrate what would have been our wedding day.  But neither of that is in the cards for us anytime soon, especially with the rates rising so drastically here in the south.  I'm not even allowed to venture into a grocery store or even a dr's office (unless it's a critical matter), I wasn't even supposed to go to the farmers market, but I was careful and I needed it for my sanity.

As I mentioned previously, this weekend we would have been in Charleston, SC by the water getting married.  Although, to be honest, I much preferred our court house wedding on Valentine's Day.  Small crowds are more my style, better for my anxiety too.  The following are some photos of our wedding day, me winning in Catan Rivals, me giving Sterling haircut #2, and me getting some steps in.  I know I'm lucky and I know I'm doing pretty well for only 4 months out, and I certainly know I have an amazing support team between my husband, my family and my friends.  I'll keep moving forward as long as possible no matter how bumpy the road. 

4 Month Post Transplant:

• Steroids: They make me emotionally unstable, break out like I'm a greasy teenager, make me grow man hair, and still provide me with a bloated face.

• I've been able to get back into cooking and meal planning and laundry when I have the energy 

• My motor control is still very shaky making certain tasks and hobbies difficult.

• I walked 2 miles the other day which is the longest walk to date since transplant

• My days still mainly consist of binge watching Netflix, playing games, and reading at night.

Thanks for the continued support and the random gifts and cards that keep my spirits high.  Stay safe everyone and please wear a mask for people like me!

Got THE CALL...and then it was Cancelled

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

On Call

Let me explain what being on a transplant list is like.  This is not to discuss my feelings in regards to heart failure and needing a new heart, that's for a later post that I can't seem to put together.

This post is to illustrate the unexplainable anxiety waiting for an organ causes not just on myself but for all involved.  While on a transplant list, you are always on call, similar to a doctor.  I could receive THE call, the you have a new heart call, literally any day at any time.  I relate the anxiety to an extreme version of waiting to hear if you have been accepted for your dream job after having an interview, or having a biopsy and waiting for the results.

Anytime I get a call from a (919) area code with Durham listed as the city, my heart sinks and the suspense and panic set in.  That could be THE call.  How do you prepare for that?  How do you prepare for a new organ, a new heart, that could arrive today, tomorrow or in a couple years?  The pressure forces you to question if you're ready for the process, for the surgery, for a new way of life, for a lifetime of medications, illnesses, biopsies, multiple transplants and surgeries and so on.

To try and communicate the amount of stress and angst waiting for a new organ brings about for me is beyond challenging. Yet, it is equally as burdensome on Sterling and my family as well.  All of our lives will be changed, not just mine, for better or for worse.  Getting a transplant is a team effort, requiring multiple caretakers that are financially and physically independent.  Sterling's anxiousness in regards to all of this is compounded by the fact that he does not have cell reception in his school.  He's afraid we'll get the call and we won't be able to get a hold of him.  We're currently just tiptoeing through life.

This process is and will continue to take a toll on us, financially, physically, but more importantly mentally.  We're both doing a great job of staying busy and keeping our minds focused on other things, especially since we just moved into an amazing new rental.  We bought a fire pit and a grill and trying our best to relax our bodies when we can.  However, that is not to say that it doesn't cross our mind daily.  Asking ourselves if we are ready.  Being on a transplant list, waiting for a new organ, as taxing as it is, is only the beginning.  Receiving and maintaining life after a transplant will be an entirely different beast that I have yet to comprehend and process.  That is for a much later post.

One of the reasons I felt compelled to share the emotions of this process is to impart that the excitement people have for me when they hear I am on the list, is not quite as exciting for me.  It's an exceedingly complicated emotional roller coaster and this is a part of it, a part that needed to be shared for others to understand me and this process a bit better. As always, thanks for reading!  Much Love.

Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart.  If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain.  I love you all and always appreciate your love and support.  gofundme.com/kiele