Tom Royer Medical Fund

 UPDATE
September 5th, 2023


Im sorry to report that Tom suffered a major setback early this morning after having difficulty breathing and severe back pain. Tom was rushed to the hospital via ambulance and is currently in critical condition in the ICU. His doctors suspect he may have fluid in his lungs. 
His soulmate and wife, Lilly is trying her best to be strong and vigilant as she waits for answers from his medical team. 
As you can imagine this is a huge setback for both of them financially as neither of them have been unable to work. 
Lilly cannot drive and will need help with transportation.  
More details will be posted as they become available. 
In meantime please consider a donation to Tom’s GoFundMe to help with their immediate needs. 
Thank you, 
Tracy (campaign organizer)


Tom Royer is a Portland drummer who underwent a (miraculous) double lung transplant almost 5 years ago.  

Tom recently suffered a serious medical setback and his lungs are slowly failing, rendering him too weak to work much and with no help from the state.

A recent bronchoscopy revealed that he has Bronchiolitis Obliterans Syndrome (Rejection of the lungs)

Attached below is a letter written by Tom, summarizing his challenges before and after the lung transplant, as well as the bureaucratic hurdles he’s (and his wife, Lily) have had to endure trying to get assistance from local agencies.  It’s truly heartbreaking. 

Please, do what you can to help Tom and his wife Lily.

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Hi, My name is Tom Royer and my wife’s is Lily Wilde. We have lived in Portland, OR and been a part of the music scene here since the early ‘90s (I’m a drummer and Lily is a vocalist.)

In December of 2013 I was diagnosed with a terminal lung disease called Idiopathic Pulmonary Fibrosis. The main symptom is shortness of breath with exertion. There is no cure for IPF. The only “treatment” is a lung transplant. I had dozens of tests and a lung biopsy to confirm the diagnosis and then was referred to the University of Washington Medical Center lung transplant program. I spent the next 7 months getting tested for my medical eligibility for a transplant. In September 2014 I was placed on the transplant list.

By this time my symptoms had gotten much worse and my supplemental oxygen requirements kept getting higher. By March of 2015 I required 45 LPM just to sit up or walk to the bathroom. (Up from 5 LPM a year earlier). In the meantime, I had been called to Seattle for 3 dry runs. (Not a practice run, but a call for available lungs that turned out to be “not valid.”) I was so close to death that the team at UWMC was trying to find a facility near Seattle that could handle my oxygen requirements to wait for usable lungs. Luckily, on April Fools Day 2015 I was called up to UWMC and I got my transplant April 2nd.

The surgery couldn’t have gone better, and except for a 2 week hospital stay for a viral infection 2 weeks after my release, my recovery went very smoothly. My wife and I had to stay at an apartment near the Medical Center for the next 2 months. During that time I started Physical Therapy and was able start driving again. We moved back to our Portland home on July 4, 2015.

I resumed Physical Therapy in Portland, and by November I was able to go back to work part-time. I also began playing a few gigs at that time. I continued to get stronger all through 2016 until October 30. That morning I woke up feeling very weak and found I had a temperature of 101F. We called an ambulance and they took me to Providence Hospital. This is what I was told to do if I got sick. Long story short, I spent the next 2 months in a drug induced coma, on a respirator, restrained and living in a very freakish
dream that had many ties to what was actually happening to me and a lot of totally crazy things unrelated to reality. When I was finally allowed to wake up I was so weak I couldn’t walk, my voice was gone and I had a hell of a time getting the doctors to let me go home. I was released on Jan 2nd 2017.

This time my recovery didn’t go as well. My lung function improved a little at first but then started to decline. In May, during a visit to UWMC, I got a Bronchioscopy that showed I had chronic rejection or Bronchiolitis Obliterans Syndrome. I spent that summer getting the treatments that could possibly slow down the decline. I had a massive infusion of steroids and my prednisone dose was raised X16 for months. I got an esophageal surgery called a Nissen Fundoplication to eliminate any acid reflux from getting into my lungs. There was no improvement but these treatments may have slowed the progression. Right now I’m maintaining 60% lung function. I’ve been told that it will not get better but they can’t predict how long it will hold before it gets worse, or how slowly or quickly that will happen.

Once again, my main symptom is shortness of breath with exertion. I have been unable to work since October 2016. My mortgage payment of $726 is over half of our income. My wife and I “live” on that combined income of $1,131 a month from disability and Social Security. We currently get $264 in SNAP food benefits. If we were to make any money working it would reduce that by the same amount. We are both on Medicare and have help paying our premiums, deductibles and copays from Medicaid. If our income were to rise over the poverty level ($1,436) we would lose this help. On plain Medicare we would never be able to afford to see a doctor or pay the co-pays for our medications. Needless to say, the anti- rejection medications I must take to stay alive are very expensive and without that Medicaid assistance I would not be able to afford them on such a low income. This situation makes it impossible to pay our living expenses, and I fear we will end up losing our home and living/dying in the street.

We have accumulated about $12,000 in debt since I’ve been unable to work—added to an existing debt of $8,000 from needed repairs on the house we bought in 2011. We are currently NOT in default on any of these debts. Unfortunately, we are blocked from accessing any of the equity we’ve built in our home until 2027 because we received a
DPAL (Down Payment Assistance Loan) from the city and the contract forbids any refinancing for 15 years. A request for a hardship waiver from this clause was denied.

On top of all that, I have developed a very painful case of osteoarthritis in both hands, severely limiting my ability to do pretty much anything but especially playing drums. After trying corticosteroid shots and found them ineffective I was referred for a “first carpometacarpal joint facial arthroplasty w/flexor carpiradialis tendon harvest and transfer”. I had the surgery on my left hand in December and am currently going to physical therapy sessions and exercising daily to regain mobility and full function. I’m waiting a few months to do the right.


We hope we can pay off this debt and are seeking any kind of help or advice on navigating through this bureaucratic maze. As I’m sure you can imagine, it is difficult enough having to deal with a debilitating, life-threatening illness without also facing so many financial hurdles.

Thank you —Tom Royer