Die on that Hill

Serious discussions around the possibility of re-transplant picked up in March 2023. As mentioned in the previous blog, we were running out of options to fight off the rejection and Danny’s lung function was noticeably declining. We learned very quickly that UW Health required the Covid-19 vaccine to even start the re-transplant evaluation. This is something we were (and are) very uncomfortable with, and we fought a hard battle. We know we aren’t the only people fighting this battle, and because of that, I want to share everything we tried in case it can serve as a resource for someone else. It’s also a reminder to ourselves that we did everything within reason to fight for Danny’s choice. 

There’s a lot of passion around these vaccines (in both directions), and I want to be very clear about a few things before I go further. 

We are not anti-vax.

We are not anti-medicine.

We are not anti-hospital.

Danny wouldn’t be here today if we were.

We are proud to be patients of UW Health, and we love our care team. However, we believe in autonomy. We believe in working in partnership with our medical team. We believe in patients having a choice in their care, and when it comes to the current transplant landscape in our region that is not the case. 

Comply or die.

In 2021, the transplant team offered and highly recommended the vaccine, but we always declined. Our initial concerns included, but were not limited to:

1. The fact that it was pushed to the market so quickly.  We weren’t trusting of the intentions or data behind it. Fast-forward and our guts may have been onto something based on some recent reports.
2. Reports of the vaccine triggering organ rejection in some patients.
3. Patients on immunosuppressants not seeing the same immune response as those who weren’t thus rendering the vaccine arguably useless
4. The mixed reports on who the vaccine served. First, you couldn’t get or transmit COVID. False. Then you were just less likely to get or transmit COVID. False. Ultimately it really only prevented you from having severe symptoms and landing in the hospital. Also still false.

On a related note, have you watched the Dopesick series? You may find there are some interesting parallels.

Partner all of those things with the fact that our state was incentivizing residents* with $100 gift cards to get vaccinated and our insurance company was incentivizing providers, and we just could not get on board. We felt like this “miracle option” shouldn’t need incentivizing. It should speak for itself. 

We started hearing reports of vaccine injury and this podcast with Peter McCullough really opened our eyes even more to what might be happening behind the curtain.

This simply was not settling in our spirits. The benefits weren’t outweighing the risks. This was especially true when Danny and I both got the virus in February 2022. Danny thankfully had mild symptoms and kicked it in a few days. I recognize that’s not the case for everyone, especially in the immunocompromised community; however, this conversation all comes back to having the choice to perform your own risk assessment.

So when this discussion about requiring the vaccine in order to even be considered for a second transplant emerged, we were devastated. The argument is that transplant recipients have been given the gift of life and receiving the vaccine reflects a commitment to take good care of those organs by giving them “the best odds for surviving and thriving”.  From their perspective, receiving the vaccine was giving your new organs the best chance of survival. But they don’t force you to eat healthy. They don’t force you to exercise. They don’t force vitamins and minerals. They don’t force mindfulness and mental health stability. You get to choose to do those things. Those things are simply recommended as best practices.

We started with a conversation with our transplant team. We have an innovative, smart, and capable team at UW. Danny’s coordinator has been an incredible supporter and cheerleader for us over the last 4 years. Unfortunately, our coordinator and our pulmonologist were messengers of this policy. Whether they agreed or disagreed with the policy was irrelevant because they didn’t have the authority to overturn it, so we went a level up.

Danny wrote a letter to the selection board pleading for an exemption.  Denied.

He tried using the Ethics board as a resource. Denied.

He tried using Patient Relations as a resource. Denied.

He tried getting an exemption due to natural immunity. Denied.

He even tried reaching out to a Senator and got a quick response that he didn’t have jurisdiction over state hospitals.

We ended up back in conversations with our Pulmonologist. They acknowledged the risk of vaccine injury, but they argued the risk was small and that there’s a risk with any medical treatment. That’s true; however, I countered that the risk of hospitalization from Covid was also small and with any other medical treatment we get to choose if we’re willing to accept the risk. That was taken away from us.

We even went as far as considering other transplant centers across the nation. This mandate is not nationwide. There are transplant centers, who aren’t requiring the vaccine for transplant eligibility. Most are not broadcasting it. It’s such a controversial topic, but if you call and ask, they’ll tell you. So we started researching.

We called Froedert in Milwaukee, the Mayo Clinic in Minneapolis and Jacksonville, Northwestern in Chicago, and Emory in Atlanta. They all required the vaccine. Emory actually told us they don’t re-transplant patients who weren’t initially transplanted at their center.

Duke University in North Carolina has an incredible lung transplant program, but a quick Google search returned a story of Duke denying a 14-year-old girl a kidney transplant because she wasn’t vaccinated. The family ultimately filed a lawsuit and found another transplant center to handle her transplant, which she got on May 23, 2023. They’re also in the process of getting Yulia’s Law passed in North Carolina, which would prohibit transplant centers from discriminating against transplant patients based on their Covid-19 vaccination status.

I reached out to the family through their GiveSendGo account, and Yulia’s mother, Chrissy Hicks, sent me a few leads.

• Advent Health in Orlando
• Miami Transplant Center
• Medical City Dallas Hospital
• Tampa General Hospital

All of our options were going to require a major relocation, which meant moving away from our massive support system at home and starting a relationship with a whole new transplant team. We also learned that post-transplant transfer back to our home team wouldn’t be an option until at least a year after the transplant to protect the program’s performance statistics. So this option didn’t make sense for us.

Ultimately, none of anything I covered above really mattered. We had no leverage. From our perspective, this transplant center and the hospital had put all this work into saving his life, but they were willing to let him die over a vaccine that we barely know anything about.

At that point, we were seeing the writing on the wall and started researching ways to mitigate any negative effects of the vaccine. Myocarditis and Pericarditis were on our list so he asked to have his heart checked prior to getting the vaccine so we’d have a baseline. Checking the heart’s health is part of the transplant evaluation, but that request was still declined. Call it Divine Intervention if you want, but a week later he ended up having a blood clot in his heart and some pulmonary embolisms (ref: next blog), which resulted in several tests on his heart and blood thinners. We know blood clots were on the list from the shot, so the blood thinners would cover him there.

We had a few conversations with Dr. Pierre Kory about a potential game plan that wouldn’t interfere with Danny’s normal medication regimen.  If you’re unfamiliar with Dr. Kory, familiarize yourself. We feel so lucky to consider him an advocate.

If you’re ever in a similar situation, one option you could consider is a robust vitamin regimen. I can’t promise anything from this list, and you should do your own research to see what fits you best. This video from Dr. Livinggood was a good resource as well.

• CoQ10
• Turmeric Cercumin
• Vitamin D 5,000-10,000 mg
• Fish oil - keeps your blood slippery, which makes it a slight anti-coagulant.
• Reduce inflammation, which increases your risk of clotting (ie, processed foods, inflammatory oils)

Ultimately, he got the shot on May 8th, and I’ll discuss our subsequent hospital admission on May 10th (two days later…) in the next blog. 

Comply or die.

 

*edit 8/21/24 - the original URL was removed from the CDC website, which I anticipated. I've linked a screenshot of that page instead.