My name is Ashley and I am the niece of Tom Hadar. He has been diagnosed with a rare autoimmune disease. Unfortunately he has been suffering a great deal for a few years now before receiving an official diagnosis. It started that the Dr’s thought it was an issue with his ears that came to light in preparation for a shoulder reconstructive surgery. He had extreme hearing loss and extreme headaches that weren’t going away. This led to multiple Dr visits and worsening symptoms that there seemed to be no answers for. The headaches got worse- this led to multiple scans of his brain. The dura mater (the membrane that protects the brain) was thickening and putting pressure on his brain that caused his headaches-this is when we finally got a diagnosis of an autoimmune condition, and 2 separate brain surgeries as a result. If you are familiar with autoimmune medications, they are no joke. It can take alot of trial and error before they can find one that will work. This has led to a lot more hospitalizations and side effects -and allowed the autoimmune disease to continue to attack his body. He was hospitalized back in December 2024 for problems with his lungs and thinking they were going to have to biopsy his lungs- overnight they were able to help his breathing just by getting the right drug combinations. Now he is going through something similar with his kidneys. We are hoping that they can get his kidneys to function better, but dialysis is not off the table. He is currently in the hospital and we aren’t certain when he will get out. (Quite honestly this isn’t even the tip of the iceberg with everything he has been dealing with. Tons more to add….staff infections blood clots etc -The disease is called: Granulomatosis with polyangiitis

Also called: Wegener's granulomatosis) Poor Aunt Michelle had been his caretaker throughout this entire journey. His kids are driving hours from home to try to support them both the best they can. The reality is- this has been extremely exhausting, expensive, and fear inducing. Because this disease basically attacks every part of the body- the future is unknown and scary. I would love to be able to take some of the stress away from the family by being able to provide some financial relief. If you can donate anything- big or small it would be a huge help. This could literally happen to anyone of us- Tom was extremely healthy and fit before this disease has attacked his body. For years, Tom and Michelle have been extremely active in supporting others and it is our turn to try to help them in their time of need.

Update April 22 from Aunt Michelle:

The kidney doctor was here, Tom is going to be in the hospital probably for the rest of this week. They’re going to start him on dialysis.

The doctor said he’ll talk to the surgeon about putting in a port for it. They will watch him for a few days to make sure everything goes smoothly. Tom made the final decision to go with dialysis. The doctor was hesitant because of Tom’s blood pressure being low. But nothing else is working. So we’ll see.

Apriil 23, 2025 Update from Aunt Michele: Tom is going to have surgery today at 1:00 in unless they bump it up. It’s to put a port in for the dialysis. This means he had to go off the blood thinners. It’s much more invasive than the biopsy. I’ll keep you updated.

April 24:

Uncle Tom has a little bit of pneumonia now.

They did a CT scan on his head and chest and echocardiogram to check his heart.

Kidney Dr hasn't been in yet.

He did code during the dialysis trial yesterday.

April 24:

From aunt Michele:

Unfortunately, when they were doing the dialysis about three hours in, he had a cardiac arrest. His heart stopped beating. They did CPR on him for four minutes to revive him. He is now in the ICU unit in Union Hospital. He’s very lethargic and he hasn’t eaten since Tuesday evening. He’s is able to talk, he knows his name and date of birth, last night he knew he was at Union Hospital but this morning he asked me how he got transferred to Envive. Michael is here and Melodie and Caleb are on their way.

April 25:

from Aunt Michele-

All the nurses and doctors that has seen him this morning says he looks and sounds much better today and I agree. His swallowing is much better. He took his pills with water instead of applesauce. He’s not shaking as much, and he’s sitting up straighter now. But he’s a little aggravated with not knowing when the dialysis will be starting. They plan on doing it this time much slower, do it in 12 to 24 hours instead of the 4 hours. Plus they said it will be done in the ICU where his blood pressure, oxygen level and heart rate is being monitored all the time.

5/8

Uncle Tom got his first shower in 4 weeks today! He said it was WONDERFUL!!! He rode the bike for five minutes straight cuz his therapist is a slave driver and she made him walk 5' to his bed after he exercised ;) He did awesome (my sister Jessie is his therapist )

5/9

Walked another five feet today. Using leg and arm weights today as well with his exercises for strengthening. Tolerated a 60 second stand :)) Oxygen is staying up with all activities, we do supplement a little oxygen if he gets short of breath, but it’s staying where it needs to be.

Aunt Michele has gotten some rest too, been able to stay home at nights and get some errands done while he’s gone to dialysis

 

Melodie goes back Saturday and she will be on her own, the boys are pretty busy for the next two-three weeks.