Tom ended up in the hospital this week. It was a mix of emotions of being scared at how much he has declined recently but also a sense of relief that he would be watched by medical professionals more closely.

It has been a long road to get us to here. This is a really long post, so buckle up. I am not a medical professional, so this is my interpretation of everything.

Tom’s symptoms started in 2021.

At the time he was having really bad heartburn and gut issues. It was also around this time that he had gum pain due to severe inflammation in his mouth. He was referred to a rheumatologist and started a path for treatment for seronegative rheumatoid arthritis. The way it was explained was that his system was producing anti-bodies that attack his body causing the soreness and inflammation. It felt like we had a diagnosis and a treatment.

However, over the next two years it was an ordeal to find the right medication that would treat his symptoms and not make him even more miserable. He went on different immuno-suppressants, but what this ended up doing is giving other things free reign to rule over his insides.

His heartburn grew to vomitting regularly. He was physically sore and arthritic all the time. He started trying to narrow down foods to see if there were trigger foods to the stomach issues. He cut out many groups of foods including his favorite lasagna. Sometimes it seemed to help, other times it seemed like he was not able to eat anything that didn’t become a “trigger” food.

The symptoms just kept growing in intensity and in oddity.

In November 2022, Tom suffered a stroke in his lower extremity. Fortunately, the stroke showed that he had testicular cancer that we may have not found until it was too late. He had a fairly immediate orchiectomy. Unfortunately, because he had to be on antibiotics due to the surgery, it messed with his immuno-suppressant medication for the seronegative rheumatoid arthritis. These two do not mix well together. So his immune system had to be rebuilt in a way after this surgery.

Tom was still on the mend, when our house got hit with a bad stomach bug in February of 2023. It turns out we all had norovirus, but it hit Tom with a vengeance. I will not forget being in the bathroom getting ready and watching him puke blood everywhere like he was a fire hydrant before I dragged him to the hospital. Due to his compromised state already, norovirus almost killed him with the amount of blood he was losing. It turns out that he had a stomach ulcer that ruptured when he got the stomach bug that they rest of us cycled out of in 12 hours.

Around the fall of 2023, Tom’s immuno-suppressant medication stopped being affective. There is a shelf-life to some medications, and it seems that his symptoms with his chronic nerve pain didn’t want to play nice.

He started narrowing down even more foods in his diet to get as clean as possible. It seemed like every day he was weeding out foods that he thought was a trigger food. He made bread from scratch to not have preservatives and made beef tallow to use as cooking oil to get away from seed oils.

Some days were good, but the very next day he would not be able to walk.

The beginning of 2024, unbeknownst to us at the time, was the start of a steep decline.

We all passed around a cold early in the year, and again while the rest of us got over it, Tom’s turned in to walking pneumonia. And it lasted for months.

We had approximately 15 trips to the ER to receive urgent care, but he would just be ping-ponged back and forth between the ER and his primary care with neither taking ownership of handling his medical needs. Most of the time he would not even get any fluids and would be turned away without any medical intervention. There was one time I went with him that they tested him for COVID and Flu which came back negative, and we begged for fluids because he had been puking. And they denied the request, until he started puking in the ER. It was just one doctor after another not seeing the severity of his symptoms. Or they would see them but tell him that he should get primary care (he has VA healthcare), or and I quote, ” I don’t know what you want me to do about it.”

After months of not getting better, we finally demanded and begged for scans. Tom was absolutely miserable with the pneumonia symptoms, but he was also experiencing other symptoms and they seemed to increase with each passing month.

These scans came back in May and we received the dreaded call that there were multiple growths in his lungs and esophagus. There were too many for them to count on the scans, but it did not seem serious enough to rush him into surgery. We waited for a few weeks for the next steps.

In June, he had two different scoping surgeries to pin point what was going on with the growths. Were they cancerous or fungal? He had one in his lungs and one in his esophagus. They both came back negative for cancer or fungal, so it is still a mystery why they are there in the lungs. The esophagus turned out to be 75% covered in cavitated ulcers. Which doesn’t help when you are puking daily.

As all of this is happening in May and June, other symptoms were really ramping up:

• blindness
• paralyzed from the waist down
• nerve pain
• sores on his skin (they were more like open gashes that would just pop up out of nowhere)
• spider rashes
• severe weight loss (he has lost 65 lbs in the last 6 months…see the picture above)

It seemed that any time we would go to the hospital, people would treat him like he was a hypochondriac. I mean it does seem unbelievable to be blind one day and a few days later to be normal. It was like we were on a twisted medical rollercoaster that no one would help us get off of.

We have been desperate this summer. Tom and I both have cried in the ER to different nurses and doctors begging for someone to take a holistic look at his situation. We hoped every time we went to the ER that they would admit him. We were denied a referral to Mayo, and felt like we were out of options. I was just watching Tom waste away. He is no longer able to drive. We have canes and a wheelchair, and it was like we were living in hospice care in our house. I started waking up at all hours of the night or coming to check on him in between meetings at work just to make sure he was still breathing.

Eventually we were forced to begin end of life planning. We sold assets, planned funeral music, and had hard conversation about what he wanted if he wasn’t able to make his own medical decisions anymore.

The one ray of sunshine is that a doctor on loan from University of Missouri was brought in to review the scope of Tom’s lungs. During the consultation he stopped and began asking questions about unrelated medical questions. The questions were very strange, but very on point and it almost seemed like he was reading Tom’s mind. Like the were asking the size of his boogers kind of weird…

Little did we know he was a real life Dr. House. He perked up mid sentence and said “You don’t have Seronegative RA and you aren’t on the correct meds. You have Wegener’s Disease” He scheduled the test to confirm for Tuesday. Looking back each of the symptoms I described above could be explained by the Wegener’s Disease, down to his massive boogers. It seemed like there was a light at the end of this tunnel.

But then Monday Tom fainted at the dentist office.

Since the VA hospital here is ALL medical care, they were able to get him to the ER in the same building. This time for whatever reason, the doctor there decided this was the time to admit him.

While a hospital stay is never ideal, it did seem like a ray of hope for us. It felt that someone was finally taking it seriously, and they couldn’t ignore what was happening if they had them in their constant care.

He has had labs daily. He had two more biopsy surgeries: one on his hand where one of the sores was festering and the other on his kidney.

He was eating three square meals a day but he still lost 3 lbs this week, under their care.

But we inched closer to a diagnosis. Two infectious disease doctors flagged the idea of Wegener’s disease or GPA, so all the tests this week were to confirm that diagnosis.

And we finally got it, and treatments have started.

GPA is very hard to diagnose because it is extremely rare, and the symptoms often lead you on a twisty path or they are misdiagnosed which delays the real diagnosis. Most of our doctors had never heard of GPA until Tom walked in. It is one of the only autoimmune diseases that attacks organs with inflammation. So many of the doctors we talked with this week said his symptoms were wild. The symptoms and side affects are out of this world that they are almost unbelievable. The symptoms are so crazy that the doctors don’t know what to do so they only chase one symptom. Even this week, several doctors wanted to him to have a stomach biospy to rule out lymphoma because they were honing in on just the digestive inflammation. Three in 100,000 people get diagnosed with GPA, but many get diagnosed to late because of this. We have been hearing that only about 3 in a million survive because they don’t receive the GPA treatment in time. Once the symptoms start, if left untreated it is fatal within 2-3 years. We are at almost the three year mark. My stomach just drops knowing I was watching Tom die right in front of me.

But we are finally here.

A diagnosis and a treatment plan.

Praise be to God.

The treatment plan is fairly simple once diagnosed. He is on day two getting the right medicine, and he is able to walk unassisted for the first time in months. He is still restricted due to the loss of muscle mass. however the pain that was eating him alive seems to be miraculously subsiding.

Praise be to God.

Thank you to all who have prayed and reached out for support. This journey is no where close to being over. He has a long road to recovery still, but we know we saw a miracle this week.