Jays Journey.New Beginnings

11/20/2025

Jay underwent his first IV treatment with IgG last week but did not tolerate it well, resulting in a three-day migraine. His doctors have recommended Hizentra as an alternative treatment. Jay’s immune system is incapable of producing sufficient antibodies (IgG), leaving him more susceptible to illness and increasing the risk of severe infections. Hizentra, an IgG replacement therapy, provides the necessary antibodies, preventing infections and maintaining his health until a transplant. Tomorrow, a nurse will visit our home to instruct me on subcutaneous administration, with the goal of minimizing side effects. Notably, Jay previously received this treatment at the age of 10, for over a year, following his diagnosis with PLE, and it built up his immune system and helped put PLE into remission. We are hoping that tomorrow's treatment won’t cause any side effects. However, if Jay experiences significant discomfort, we have informed his doctors that he will discontinue treatment and instead rely on his current regimen, while praying that his condition remains stable until a transplant can be performed.

10/12/2025

Another successful "tune up" in Omaha is in the books! Jay underwent a stress test and several other visits, and cardiology reports that he's doing okay, with the exception that he still requires a heart transplant. His doctor's humor is a blessing, and we're grateful for his care. Jay's stability is a testament to his strength, and we're thankful that he's not experiencing any further decline. To optimize his treatment, his medications will be adjusted in light of his significant weight loss, and we're hopeful that this will yield positive results in the long run. Jay is looking forward to reducing his medication regimen. He also consulted with his liver specialist, who informed us that his liver is gradually deteriorating over the past year. Fortunately, he's not exhibiting any symptoms, and we're indebted to his lab tests for guiding us through this process. Jay has finally received insurance approval to commence his Hizentra treatment, a weekly regimen aimed at bolstering his immune system to prevent cellulitis and other infections. Our follow-up plan involves a heart catheterization and additional doctor's visits in January, unless we receive the life-changing call that a heart and liver are available for transplant. In the interim, we'll continue to focus on maintaining Jay's health and activity levels, while persisting in our fundraising efforts to ensure we're prepared for his transplant. We're deeply grateful for the outpouring of prayers and positive thoughts from all of you!

09/29/2025

This , don’t just think about heart health. Think about donating hearts. Because the strongest legacy we can leave behind is a heartbeat.

In India, the need for heart transplants is rising, but the number of registered organ donors is still far too low. That gap costs lives every single day.

When you register as a donor, your heart has the power to live on — to keep beating in someone else’s body, to give them a second chance at life.

This World Heart Day, don’t just think about heart health. Think about heart giving. Because the strongest legacy we can leave behind is a heartbeat that continues.

Take a step with ORGAN India. Register as an organ donor today at bit.ly/4fSbGAz.

09/29/2025

29th September is World Heart Day. Today, we're thinking of all those on the organ transplant list waiting for a new heart, and to those who have already given someone else new life with their generous gifts.

Confirming your decision on the NHS Organ Donor Register takes just 2 minutes. It's the best thing you'll do today.

09/21/2025

Just a heads up that we will be heading to Omaha again on October 7-9 for more exams and check ups. Jay’s been doing ok. Staying steady and losing weight and so far cellulitis free! Prayers he keeps doing good. Will give more updates after his appointment again. Feel free to share his gofund me again if anyone would like too. We are always trying to add to it for when we get his lifesaving call…..and the fact that it costs us around 200-400 everytime we make the trip to Nebraska between hotels, gas and missed work. Thanks again.

09/01/2025

08/31/2025

Shout out a happy birthday to Jay! He’s made it to 27 years old, although sometimes idk how! lol. He’s been through more in his life than alot of people twice his age and he still keeps fighting! I’m so proud of him. Love you Jay.
If anyone wants to send him a little $ to get a birthday treat today here’s the Venmo -Thoma-465
Or the cash app $KelyThoma
Thank you everyone

07/12/2025

This is why Jay’s dr wants him to walk daily .

Your heart doesn't work alone. In your legs, there's another one... and it's called the soleus. This deep, silent, and often forgotten muscle also beats for you. Not with electrical impulses, but with movement.

Every time you walk, climb stairs, or stand on your tiptoes, the soleus is activated. And when it does, it performs a heroic task: it pushes venous blood from your legs back to your heart, defying gravity. That's why it's called the "second heart".

Where does this discreet hero live? It's in the back of your leg, hidden beneath the gastrocnemius (calf muscle). It's not explosive or fast. It's resistant. Firm. Loyal. It's made to sustain you... without applause.

Why is it so important? Because when you activate it:

- Improves circulation

- Prevents blood clots and venous stasis

- Reduces leg swelling

- Protects your cardiovascular health

And the best part: it works even when you're standing still.

What can you do for it? Give it movement. If you spend many hours sitting or standing:

- Walk for a few minutes

- Lift your heels repeatedly

- Flex your ankles

- Make circles with your feet

Small gestures. Big results. Give rhythm to your soleus... and your heart will thank you.

Important note: The content presented has educational and informative purposes. It does not replace in-person medical consultation or personal diagnosis. If you have symptoms or doubts about your health, always consult a qualified professional.