Jays Journey.New Beginnings

03/01/2026

Jays leg is healing slowly. He got to remove the wound vac last week for a “trial” period to see if it stays healing without the added support of it. He’s really hoping no more wearing it because it’s awkward and uncomfortable but if it does what it’s supposed to then he will continue to use it. So fingers crossed he gets to say goodbye to it for good on Tuesday.
On a side note thiugh, he did have to increase the dosage of his weekly hizentra infusions because his numbers did not improve at all in the 6 grams. So drs started him in 10 grams and hopefully that helps with improving his immunoglobulin numbers.

02/10/2026

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02/06/2026

This is the part of chronic heart failure and immunoglobulin deficiencies that really suck for anyone. The sores that start out as bruises and end up needing a wound vac! He’s not at all happy with this new addition and not sure how long it will be his companion….hopefully not long

02/05/2026

WARNING: some images mau be graphic and disturbing .

Jay's journey is a shining example of courage in the face of adversity. His ongoing battle with poor circulation and lymphatic system issues has led to a range of challenges, including swollen legs and increased vulnerability to injury. After a minor accident while splitting firewood in November, Jay developed a persistent infection that required medical attention. Today, he visited the wound clinic in Dubuque, IA, where doctors were able to drain the infection and plan to apply a wound vac to aid in the healing process, pending insurance approval. Despite the obstacles, Jay's determination to stay positive and focused on his health is truly inspiring. We remain optimistic that a matching heart and liver transplant will soon become available, paving the way for a healthier, happier life for Jay.

02/03/2026

02/03/2026

Congenital heart defects are 30 times more common than cystic fibrosis and 50 times more common than childhood cancer.

01/15/2026

We are now home from Omaha ….long day yesterday and lots of drs were seen. His team out there do want Jay to follow up here in dubuque with wound care to make sure his leg continues to heal. They’re still concerned about his body holding too much fluid again so they’re giving him extra “pee” pills to see if we can get his body to release more over the weekend here at home and if he hasn’t lost enough water weight, the next step will be to try outpatient IV lasix to use stronger meds to get more off and if that doesnt work the next step will be hospitalization in omaha again. This is the summary frim ine his drs:

RECOMMENDATIONS FOR John:
It was a pleasure to again see John in the joint ACHD program at Nebraska Medicine and Children's Nebraska. We are happy to be involved in his care as needed depending on the course here moving forward.

HEART FAILURE (transplant team and Dr. Burdorf)
No change to current GDMT on SGL-2, Aldactone, no ACE inhibition due to low SVR
Remain on Digoxin
Double diuretics today to toresmide 40mg BID; daily weights, and consider salt tablets for cramps. Needs to be down in weight for Friday recheck. If not consider admission

Congenital Recs/PLE
Continue Tadalafil
Continue Digoxin
Discontinue budesonide give swelling (or hold)
Continue to replace lost immunoglobulins; check IGG and IGM levels today
Continue diet regimen
Work on Fontan specific exercises and breathing techniques.

We will see in conjunction with CHF. See CHF note for med change details.

I have discussed John's assessment and plan with the patient who has expressed his understanding and agreement today.

01/07/2026

Took Jay to his family dr yesterday for a recheck on his cellulitis and his wound in his leg. It’s not healing as quickly as they would like, it’s not getting worse, but not really improving either. So the decision was made to have Jay go daily for an IV antibiotic to our local infusion therapy clinic until we leave Monday for Omaha. They’re doing their best to honor Jay’s wishes to stay out of the hospital , if possible, along with not really wanting to admit him because of all the different sicknesses he could end up with by being there.
We could really use your most positive thoughts and prayers that his leg heals quickly and we have a good checkup in Nebraska next week. We did get some good news though, in the fact that his lungs are cleared up!
And as always, if anyone would like to donate to help pay for gas or lodging while we’re out there I will send my cash app and Venmo or pm me for my address if you’d like to send a card to Jay, just because. Thanks
Cashapp-
$KelyThoma

Venmo-
-Thoma-465

01/04/2026

Jay's determination is being put to the test as he faces another health hurdle with his 'leaky leg' issue flaring up after a piece of wood hit him while splitting logs before Thanksgiving. Following a doctor's visit on December 3, the hematoma unfortunately broke open a few days ago, leading to an ER visit, where he was diagnosed with cellulitis and possible pneumonia. Despite these challenges, Jay remains strong and is focused on his upcoming appointments, including a heart catheter on January 12, and working closely with his healthcare team to get the best care possible.

01/01/2026

Jays been busy living his life as well as he can. Been busy with deer hunting and snow removal. We had a good holiday, although a somewhat sad one missing our loved ones, but we all muddled through. Now the countdown is on for our next Nebraska trip which is January 13 for a heart catheter and the next two days afterwards he will be attending many various appointments with his many drs out there. We will be gone for approximately 5 days if everything goes good. We are still waiting for “the call” hoping he stays healthy enough to accept it.
He’s been fighting “leaky legs” the past couple months and now has a sore that does not want to heal very quickly due to his poor circulation. It’s frustrating and kinda scary keeping an eye out so infection doesn’t set in.
Prayers and positive thoughts always welcome. Good bye 2025 and hello 2026!