Jacob’s Heart ~ The Serre Family

UPDATED:

On February 28th 2024

Jacob had his SECOND heart transplant.

On March 5th 2024

Jacob had a stroke that paralyzed his left side.

“It seems like it's been so much longer than 2 months, when our lives were rocked. It feels like we've been in the hospital for 6+ months. I'm sure it feels longer since we've been through so much, and also because

we left so suddenly and unexpectedly. We miss home.

The days are long... but also can go by fast. But they also kind of run together. Time is just different when you live in the hospital for so long.

The reality that 2 months ago was the last time Jacob walked independently is hard for us to believe. I know he will walk again, he is so strong and is making amazing progress. He also has a very long way to go to get back to independence. The reality that Jacob died 2 months ago is also heavy- but reminds us to be thankful for every single day.

This journey is long. It's hard. We are tired. We are thankful. We are doing our best and working hard. We are thankful God spared our son's life. We are also hurting seeing him struggle, and sad that he has to go through so many trials.

It's ok to feel both. To feel thankful, but also frustrated. To feel happy, but also sad.

Hard feelings don't mean ungratefulness. Feelings aren't mutually exclusive.

2.5 weeks at rehab done!

3.5 weeks at rehab to go!

We are now planning what discharge will look like. He will be discharged to the Ronald McDonald House, where we will stay for a while so he can continue to be closely monitored by the transplant team, see the physical medicine and rehab Dr, see neurosurgery and get his cranioplasty, and more.

We are also beginning to plan for Jacob to come home and what that looks like. We will definitely need to make modifications to our home to accommodate all of Jacob’s needs.

I couldn't imagine this journey without the relationship and faith we have in our Father who doesn't leave our side, the one whom we draw all our strength and endurance from.

How do we do it? How do we do it with a smile on our face (most of the time)? Jesus

Philippians 4:7 "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" ” 

-Jinjue

Going forward, the Serre family’s financial needs include daily living expenses while still out of town, travel expenses, doctor and physical therapy visits, and modifications needed to be made to their home so that it fits Jacob’s current needs. Thank you to all who have donated, prayed, and shared this story!

Hi, my name is Catherine and I am raising funds for Jacob Serre and his family.

Thank you for visiting this page in support of the Serre Family - Andrew, Jinjue, and their four kids Ashlyn, Jacob, Adilyn, and Jadon. I have known this wonderful family for 15+ years, from attending church and serving in the kids ministry together, and had the pleasure of seeing and talking to them on a daily basis as I worked one-on-one with one of their children. Their son, Jacob, was diagnosed with dilated cardiomyopathy, congestive heart failure and failure to thrive at just three months old, but he and his family never lost hope and together they overcame a lot. Growing up with this condition was a journey full of ups and downs - many challenges but also many blessings. In 2021, Jacob received a heart transplant at the age of 16. It all seemed to be going well until doctors discovered that he had developed moderate Cardiac Allograft Vasculopathy (CAV), which is an accelerated form of Coronary Artery Disease (CAD). CAV is usually seen in patients who are 10-20 years post transplant, or who are non-compliant with their medications. Jacob is very compliant with his medications and less then 3 years post transplant.

Jacob, along with his mom Jinjue, were flown via life flight to be admitted to an out-of-state hospital where he receives specialized care from time to time. The doctors are still deliberating on what the next step for Jacob will be, and are unsure how long his stay will be. One possible option is to stent one of the larger arteries in hopes of reducing his risk of heart attack and buying him more time with this heart before he needs a new one.

As you can imagine, this situation has put a lot of stress on their whole family. Andrew is home with their other kids, while Jinjue has had to stop working to be able to go with Jacob to be admitted to a hospital out of state. This becomes very costly when you consider the medical costs, loss of work income, costs accrued from being away from home, travel fees for his family to be able to visit, and more. Some friends and family of the Serre’s have asked how best to come along side them financially, so we have set up this page to enable anyone who is willing and able to help ease their financial burden, as they carry this heavy emotional load. Please consider giving if you can, and keep this incredible family in your thoughts and prayers.

To read a fuller version of his story from when he was diagnosed with dilated cardiomyopathy, congestive heart failure and failure to thrive at just three months old, continue reading below.

During about a month-long stay in the hospital as just a baby, Jacob had over 20 echos and ekg's, as well as daily blood draws. Despite an uphill battle, Jacob prevailed and was discharged from the hospital. When he was finally able to leave the hospital they were equipped with his feeding pump (to give him his 24 hour a day feeds) and 10 medications.

Growing up, he had to go through surgery, procedures, therapies, countless appointments, and had to be careful about overexerting himself so as to not stress his heart.

In February of 2021, he went into cardiogenic shock, was life-flighted to Stanford and listed for a heart transplant. They were told the wait would likely be 3-6 months, but God had other plans and Jacob underwent a life-saving heart transplant just seven days later. Jacob had been thriving with more energy and vitality than ever before with his new heart. He graduated from high school a year early and was working full-time, proving that anything is possible with determination and a positive attitude. Jacob's journey serves as a shining example of hope and resilience in the face of adversity.

However, his journey and hardships to overcome did not end there. In the beginning of 2023, he was experiencing some symptoms that led his medical team to discover a large, abnormal accumulation of fluid in the pericardial cavity (a two-part membrane surrounding the heart). This fluid continued to increase throughout 2023.

In early January of 2024, his new heart was diagnosed with Cardiac Allograft Vasculopathy (CAV), which is an accelerated form of Coronary Artery Disease (CAD). Coronary artery disease is when coronary(ies) get clogged with fatty deposits, generally due to lifestyle. The kind that Jacob has is no fault of his own. It is a form of inflammation that can happen to transplant patients, in only about 4% of transplant patients. CAV is usually seen in patients that are 10-20 years post transplant, or that are non-compliant with their medications. Jacob is very compliant with his medications and less then 3 years post transplant. CAV can cause rhythm issues and even a heart attack. It is a major factor limiting long-term survival after cardiac transplantation and is the leading cause of death between 1 and 3 years after transplant.

CAV can be mild, moderate or severe. Jacob's is moderate, though it's scary that 9 months ago there was none and within that short timeframe it got to moderate. CAD/CAV is not reversible and you can't stop the progression. There is no rhyme or reason to the speed of progression.

Treatment is pharmacological, stents, and re-transplantation.

As far as pharmacological, Jacob is already on the medications that they would use to try to prevent/slow it down - all but one type (statins), which his body doesn't tolerate. His statin caused him to get Rhabdomyolysis last year- causing debilitating leg pain to where he couldn't walk.

One proposal is to stent one of the larger arteries in the holes of reducing his risk of heart attack and buying him more time with this heart before he needs a new one. Even the best of the best doctors and centers for transplant haven't been able to pinpoint 'why' this happens.

One day, they were discussing how great his echo was and how they may want to consider transferring care closer to home...and 24 hours later they found out he has this life threatening disease that will result in needing another transplant. The usual rollercoaster of heart disease/Jacob's body.

Most recently, Jacob began to feel chest pains. In a heart transplant patient, it's not normal to feel chest pain because there's a compete denervation from the donor heart. This means that something serious could be happening, heart attack or otherwise, and he may not have the typical symptoms that would alert the average person to get help.

He was taken to a local hospital and thankfully was not having a heart attack. The only test to check and see how much his CAV is progressing, is another angiogram (like he had 2 weeks ago when they found it) but an angiogram on an already very sick heart comes with high risk. However, with the chest pain, this might be the tipping point that is telling them the benefits could outweigh the risks of doing another angiogram and placing a stent.

Jacob, with his mom Jinjue, were flown via life flight out of state to a hospital and team of doctors that have been working with him for many years now. The plan right now is unclear, as his doctors are consulting with other doctors and specialists to agree on the next step for Jacob. They are also expediting the re-transplantation evaluation process and that will be done while they are there, so that it is ready when needed. The hope is to find the sweet spot, to list while he's 'healthy' (kidneys, liver and cardiac function is good) but not list too soon, as they want to get as much time from this heart as he can.

As you can imagine, this puts a lot of stress on their whole family. Andrew is home with their other kids, while Jinjue has had to stop working to be able to go with Jacob to be admitted to a hospital out of state. With the medical costs, loss of work income, costs accrued from being away from home, travel fees for his family to be able to visit, and more. Some friends and family of the Serre’s have asked how best to come along side them financially, so we have set up this page to enable anyone who is willing and able to help ease their financial burden, as they carry this heavy emotional load.

To follow along their journey and read more detailed updates, you can follow their story here:

http://www.caringbridge.org/visit/jacobserre