Support for the Cerar's - Double Organ Transplant

Hello,

For more detailed history and updates please join: https://www.facebook.com/groups/732466894982016/ Even though this page only began December 2023, the challenges this family is and has been facing began LONG before.

Why this fundraising?

All of us who know Sara, knows that she would NOT create this page for herself.

Also, while we are all proud of her for learning to ask (and accept) the help they need, a lot of that help does not account for the significant financial strain they are facing.

Since Bill has only been able to work intermittently, over the past couple years, it has also meant he hasn't been able to qualify for SSDI (Social Security Disability Income). It is all now coming to a breaking point where he will use up the little remaining FMLA time allowed and already depleted any PTO he had built up. Once these resources are completely depleted, he wont have the employment that provides their medical insurance. This coverage has been a literal life saver and no other market place plan can come near to the coverage they currently have. Therefore their best option is to keep the coverage and pay the outrageous cobra costs.

This has all also meant that Sara has had to bare the brunt of responsibility as not only the main/sole income for their home, but also navigating transportation to/from the endless appointments (scheduled and emergency) for Bill and also trying to ensure that Liam is also still receiving his therapies, support services and keeping his life as predictable and routine as possible.

It doesn't take a math genius or accountant to see how a massive decrease in income and dramatically increasing costs, leaves a family in even more struggle on top of the physical, mental and emotional stressors they already have on their plates.

As much as I know that Sara and Bill are eternally grateful for all of the support they have received in so many ways, I know that they are going to need more than just their dishes, landscaping and laundry being taken care of.

Any amount of financial assistance will not only go to their ability to pay their daily/monthly living expense, but it will be paired with a bonus! The priceless gift of stress relief, with one less thing for them to have to worry about.

If you are like me and dont like the idea of anyone else getting a "cut" of the money meant to go to the recipients (Although the fees for donating through this platform are minimal, 2.9% + $0.30 is just that much more that could go to the family) You can make direct contributions through a variety of other methods...

Venmo: @Sara-Cerar

PayPal: @sacerar

Facebook Pay: Sara Brandt Cerar

Family Dynamics:

Bill works for the UW Madison unions and Sara is a mental health therapist in Janesville.

Liam is 11 and in 5th grade. He’s a fun kid with current interests of bagpipes, watching hospital videos (just had to nix videos on AEDs and surgeries!) and really most things medical, scripting phrases he can perfectly fit to current situations, and sousaphones!! Autism, epilepsy, and ADHD are life in our house and encourage inclusion and acceptance as a general rule. We are a force to reckon with in the “oh, squirrel” arena!

History

3/22/24

Bill is navigating the process of transplant evaluation. He has finished 6 of the 31 appointments required to meet UNOS criteria. Because it is a multi-organ transplant there are extra appointments at the clinic along with the outside appointments with providers like the dentist. All of this in addition to the 3x per week cardiac rehab he has been doing for months. There are many medication changes in order to have some of the more invasive tests so keeping on top of that is another added stress.

He is home and sleeps most of the time when not working, as his energy is quickly depleted.

(From Sara)

It’s a lot. I’ll admit it…I’m scared. Bill is scared. We’re scared he will die. Scared he won’t meet criteria for transplant. Scared how this will affect Liam. Scared for financial hardships we will face. And scared of just plain not knowing.

My go-to is gratefulness. For the knowledge of the doctors, the technology that makes this level of care possible, friends and family who show us support, and our understanding of the medical system.

3/9/24

April 1-3 Bill will have transplant evaluations at UW Hospital. Three full days of procedures, exams, tests, and meetings with so many disciplines, it’s mind-boggling. After these (and a few outpatient appts) his case will go to the 70+ member team who will make the decision whether he meets criteria for transplant.

3/6/24 (From Sara)

We are back from a wonderful, warm vacation. Back to a reality that looks different than what we thought. We were able to focus on our family and enjoying our time together.

They’re not wasting any time communicating or scheduling with many different providers who must clear him for the list. Evaluation appointments start tomorrow.

2/27/24

got a call from Bill’s heart failure/transplant doctor. He said based on current bloodwork and implant numbers the transplant team talked and it’s time for heart and liver transplants. We knew this would eventually come but had no idea that we’d receive a call on the way to the airport for our vacation.

2/20/24 Bill is out of the hospital! Lots of appointments leading up to our trip next week and then no medical interventions for a week!

2/18/24

Bill still at the hospital working on stabilizing his bleeding and extra fluid. His heart continues to be 100% paced by the new device though because he walks a fine line of fluid retention he has to have it checked again through TTE tomorrow. This means discharge tomorrow night or Tuesday if everything goes as planned.

This is hospitalization 1 and ED visit 3 in 2024.

2/15/24

Bill went back to the ED last night with unexplained chest pain and is being admitted. Test after test and we have no answers yet.

1/24/24

Bill is back to work. It’s slow-going but he’s there. Not much energy left for home but income and insurance is crucial and going on disability is not an option. We’re so grateful for the healthcare he’s receiving and he has a good relationship with the cardiac rehab physiologist that he sees three times a week.

1/3/24

New device is working well. Interrogations are showing it’s pacing his heart all the time. His heart can’t beat without it.

Ok to return to work with restrictions as soon as electrophysiology clears him (expect 2-3 more weeks for them).

Medication adjustments are adequate.

Starts cardiac rehab this Friday.

The failure of his previous ICD was very unexpected. The basic message was “it should not have happened.” As you can imagine, this makes it hard to trust the new device even though it’s touted as top quality. The old one was too.

We will maintain the current regimen of management with medication, cardiac rehab, and the device placed in December.

Changing of the guard happens in February (a new AHF doc) when we’ll have this same discussion again.

12/17/23 (Directly from Sara)

Friends and Family,

First and most importantly, thank you very much for your ongoing support of our family. As many of you are aware, we have needed and asked for help in the past due to Bill’s health issues and as they intensify, we come to you again. We are aware that help burnout is real so we are very appreciative of your care and concern. We are incredibly fortunate to have so many individuals that have expressed interest regardless of how well we know each other. It truly speaks to the care and compassion of community as a whole.

Our number one request is prayers. For those interested in providing other care, we plan to start posting more specific needs. You will notice that some of these items are short term crisis-related in nature and others are logistical. Because of Bill’s health issues, there are tasks that he began but has simply been unable to complete as his health has declined significantly over the last month. While these items are most certainly secondary to needs like rides and meals, it would be helpful to cross them off the list if possible.

We wanted to provide more transparency on Bill’s health issues as well as what the path ahead may look like from both finite and bigger picture perspectives. While nothing is truly private on the internet, we would ask for confidence regarding the information shared here. It is intended to provide an understanding only. Bill has been struggling with cardiac issues for the last 11 years, mostly due to hypertrophic cardiomyopathy which, in the most basic terms, is thickening of the walls of the left ventricle which is the chamber of the heart that does the “main pumping.” He also has been challenged with significant liver and kidney issues. All of these are interconnected. It appears that there is a genetic component to these issues and they have been building upon each other over time. Bill has had a number of heart surgeries, an extensive number of heart attacks, suffered a serious brain bleed because of the blood thinners which left him with a brain injury and had yet another cardiac-related procedure last week. He is very regularly hospitalized in response to a cardiac or related emergency scenario. In the last three years alone, he has had many trips via ambulance, 29 Emergency Department visits, 18 hospitalizations, and two rehabilitation hospitalizations, all together lasting 143 days. As you can imagine, this has impacted our family in many ways – time, expense, emotions, logistics and so on. Liam has gotten so used to the ambulance being at our house for his Daddy that it now only calms him if he is able to talk with the Paramedics. No child should have to bear that.

As mentioned, Bill’s health issues have taken a different path over the last month. In mid-November and within days of his Dad’s passing of cardiac issues, he was taken via ambulance for pain attributed to the damage to his liver and kidneys. Again in late November, he was taken to the hospital via ambulance because his heart rate was alarmingly low. While in the hospital, Bill suffered full cardiac arrest where his heart actually stopped completely (unlike a heart attack). Fortunately, a nurse was able to provide chest compressions until his ICD (Implantable Cardioverter-Defibrillator) could be adjusted to pace his heart again. The cardiac arrest was initially stronger than his ICD could regulate. He had a procedure last week to insert a new ICD and more leads attached to the heart. Unfortunately, we learned that the device is now pacing his heart 100% of the time and the cardiologist made it clear that the current condition of his heart without the ICD is incompatible with life. While the ICD is most certainly helpful, his impaired heart function has impacted his liver and kidney health so much that multi-organ transplant will be necessary. His body simply can’t keep up. Only days after getting out of the hospital late last week, he had gained 28 pounds of fluid and was sent via ambulance again on Monday and will hopefully come home today. We knew that this was in his future somewhere down the line but with these accelerations, the time has come. We will be starting the transplant evaluation process in the coming weeks and ask for prayer as we navigate the long and arduous path, not only for the process itself but for Bill’s health to sustain in the meantime.

As you can imagine, the impact of these issues creates undue strain on our household. Bill’s body is so fatigued that he sleeps much of the time now. He is unable to work and is out of Paid Time Off so is no longer getting paid. He also carries the family health insurance so while he technically still has a job, his employer doesn’t pay for any part of health insurance when out of Paid Time Off. As a result, we are paying for both the employee and the employer side which is about $1,500 per month. Bill’s job is third shift so when he was able to work previously and feeling well enough, he would manage household projects and tasks as well as do a variety of care and transport with Liam. I am now managing all aspects of the household (including those tasks that we are all used to doing but take time – like grocery shopping, laundry, cleaning, clearing snow and so on), Liam’s full care including therapy and medical transports as well as simply sustaining and loving him through an incredibly stressful time for him, understanding and being fully engaged in Bill’s health issues while still trying to work my own full time job to put food on the table and keep the lights on. I communicate with Bill’s medical teams several times per week at a minimum. That alone is a full time job. Of course, none of this includes my own self-care time while managing the load.

On a more global level, we don’t know the timeline for transplant yet, if he is granted one, and we know we will be trading one set of problems potentially for another. We hope and expect that it will be sometime in 2024 but time will tell. He will begin the testing process the week after Christmas with doctor visits in early January. We can’t think about the non-transplant alternative at this point. We ask that you continue to pray as we walk through this scary process.

12/13/23

Bill is still in the hospital. No clue when he’s being discharged but likely another day or two. He continues to get IV medication to take off the fluid his body couldn’t get rid of on its own. He sleeps a lot more than usual which is a sign of worsening heart failure. He’s resting until the end of the month, will have an exercise stress test (that’s old hat for him), and then we will meet with heart failure/transplant the beginning of January.

We found out that the doctor we’ve come to trust so much, Dr Raza, is passing Bill to another doctor in the same service because he is increasing his research and decreasing clinic time. He is the principal researcher on the Cordella clinical trial (more on that later) so we’ll still see him periodically and we trust he will leave us in good hands for the quite uncertain future. Raza’s nurse has been my lifeline and I call her 2-3 times a week when things are rough for Bill.

12/11/23- Bill rushed to ER via ambulance for difficulty breathing

12/10/23

Bill lost his dad, John, in November of this year and Sara lost her dad, Ken, in June. Sara also lost her mom, Judy, in October 2020. The loss of these supports has been exceptionally difficult which is one reason they need people around them, especially now when they are facing life-altering (threatening) health complications.

The next month will be about resting since his recent hospitalization and implanted device procedure last week. At the end of the month he will have some testing that will help more seriously start the discussion about the process of transplant. He is not currently on a list though it may head in that direction sooner than anticipated.

12/9/23 -

Bill’s ongoing multi-organ problems have come to a head. They have begun the (very long and involved) process of a multi-organ transplant for Bill.

They are unsure what the future looks like with Bill’s work and for now he is unable to do anything but rest. With no remaining sick time available and carrying the insurance Sara now needs to work more to try and make up for the income loss. This means they need help with rides for Bill and respite for Liam along with just maintaining a household and Liam’s therapies and activities. Sara manages ALL things medical for Bill and Liam as well.