Kristie's Post Transplant Story

Full Circle: Kristie received a new donor heart on December 28, 2022 following a surprise offer call at 11am on Boxing Day. Have questions? #NewHeartStart

I arrived home on January 6, 2023 after transplant and have begun a year-long journey towards the new normal.

My original event was in May of 2016, post-partum. I was in ICU for two months and left with 5 stents, an ICD with an EF (Ejection Fraction) of around 30%.

I got two mitral clips the next year although I felt pretty fine- but my EF had gone down to 20%. Mostly I've felt like myself over the past 6 years with wonderful care from my team at Cedars- Sinai.

Last month I was doing an Oculus (VR) kickboxing workout in my living room when I woke up on the floor. Unknowingly I was shocked out of a deadly arrhythmia by my internal ICD that had been dormant all this time. Let's just say that it did it's one job well.

I felt OK after the shock and watched Bachelor in Paradise, not realizing what had happened. I figured I was dehydrated and contacted my NP friend Amy (who was my OG nurse in 2016 and is now my dear friend). Obviously, I’m leaving a lot of details out of a complicated story. But I ended up getting called into the hospital for 8 days of testing and workup when they made the call to list me at level 6 (lowest status) adding an additional stent to hold me over until transplant, with my EF at 12%. Dr. Raj Makkar was my original life-saving interventionist, and he did it again when he added the 6th stent last month. It happened so quickly I haven't had time to process all that has happened. I was only listed for 18 days. There has been a lot of comfort in having the same faces over me in the Cath Labs and OR through the years.

There are a lot of ways to help, and you have no idea how much I have appreciated the kindness so many of you have already shown in reaching out, especially our Wonderland Avenue Elementary School family. I will be severely immunocompromized for many many months which is going to have logistical challenges with three kids (now ages 15, 12 & 6), but we are figuring it out, and even making it fun. My core group of friends and family have been unbelievably nimble- jumping in without hesitation despite the shock of the call. Please keep sending notes and cards- I'm hanging them up to look at throughout the day.

(*Pause until 5/1/23 storage issues:-) An easy way to help without cost to you is by sending us your unused COVID tests. In the US, each health insurance member can receive 8 tests per month for free that ends for most insurances May 8. Most people have had luck at CVS and Walgreens . In addition to the 8 per month, the US Postal Service is sending out 4 free tests to each household. We will be going through an immense number of these.

Another way to help with ongoing specific needs is from the Amazon list - everything from a lot of paper products to shirts-that-don't-hurt can be sent, it will have odds and ends continually added. It was originally intended as a caregiver list but turned into a shared help list and has been incredibly helpful.

Our "serious masks" aren't on Amazon. But we can all breathe in them, I can wear them all day at the hospital on clinic days. There are Adult L'Meri and kid L'Meri sizes. I'll indicate here when we receive enough. We have enough kid sizes for now, but are running low on the adult sizes.

Part of the recipient program is agreeing to have a caregiver for the first three months due to the driving and physical restrictions present for some time. This ended on March 31. I'm doing much better now, and can walk around for quite some time. Anything involving the arms is a different story- I become exhausted quickly. Folding laundry for a few minutes or cooking a basic meal makes me want to lie down. Soon I will be able to start working on this in cardiac rehab, I'm just not quite there yet.

Starting in April, you can volunteer to donate meals, just send me a note and I will connect you.

Funds will also be used to help support the travel and expenses of the adult caregivers that are needed for the first 3 months 24 hours a day.

Kristie will only be able to work minimally over the next year. Basic necessities such as utilities and property taxes will need to be covered as well as copays and other tangential medical expenses, including support services and in-home nurse checks. Much of the week will be spent at Cedars this coming year at "Clinic" monitoring rejection and attending cardiac rehab. For the next eight weeks, I have to have a cardiac biopsy every Monday. I will edit and update as I learn more.

My caregivers for the first three months were my sister Jennie and my brother Josh who swapped on and off and did an awesome job learning all things nursing, including monitoring about 20 medications and three blood sugars per day while making sure I was eating all of the right things and that they were uncontaminated by things we have never thought of before.

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Other ways to help:

Handy Gift Cards (Plumbing, fallen tree removal, patio repair are main needs at moment).

Task Rabbit Gift Cards (similar to Handy)