Tag Archives: phototherapy

Journal

Coronavirus Lockdown Journal Week 3: April 6-12

On Thursday, March 18, Yolo County, CA instituted a shelter-in-place order to begin the next day until April 7th. Here’s a tweet where I marked the event.

On that same day the Governor Newsom announced a statewide stay-at-home order. Here is a screenshot from my phone:

Recently both the county and state extended the lockdown to May 1st, and it could be even longer. I plan to post a weekly journal updated every day or two to mark thoughts, reflections, and news related to life sheltering-at-home.

Friday, April 10, 2020

Happy Good Friday. Here’s a tweet with a link to a message I shared in 2017 at Davis Chinese Christian Church:

Dr. Francis Collins Prayers from Science and Faith in Pandemic Times

Dr. Francis Collins, the current NIH Director, gave an interview on a webcast Monday. In Science and Faith in Pandemic Times, Collins provided timely information on the coronavirus pandemic. About half way in he begins to address matters of faith.

Near the end, he shared what he is praying for. Lori and I have used his thoughts for our own prayer times, which I share here.

  1. Healthcare providers who are putting themselves in harms way and many quarantined from their families.
  2. Families who have lost jobs and are in severe economic distress.
  3. Researchers working night and day to come up with a treatment and vaccine to save lives.
  4. Church, that this would be a time where church fellowship can provide spiritual nurture.
  5. Myself, that I would understand something about myself and learn from it. Joshua 1:9 to be strong and courageous, and not to grow weary.

How are you praying during the pandemic? Is it difficult to pray in the face of so much tragedy?

Follow the Coronavirus Journal Series!

Coronavirus Lockdown Journal Week 4: April 13-19

Coronavirus Lockdown Journal Week 5: April 20-26

Wednesday, April 8, 2020

Creative Art During the Covid-19 Outbreak (Lori)

Recently, I recalled a creative exercise I did with a small group last summer. I was looking for a way to incorporate an artistic element into reading an excerpt from the Bible.

Although I’m not the best at drawing or painting, I modified the exercise for myself so that I could enjoy it and remember what part of the reading impacted me. I repeated the exercise during this pandemic—it’s the same reading from the Bible: Psalms 1. Using leftover scrapbook pages, I created the background and banner that I wanted.

In the future, I feel depicting Spring in full bloom will remind me when the coronavirus outbreak happened. I have confidence that I will look back on this unusual time in my life and remember how my faith in God sustained me like a tree planted by streams of water.

Tuesday, April 7, 2020

Treating My Lungs While Not Worsening My Skin (Howard)

One of my biggest concerns during the lockdown is needing to go to the medical clinic or hospital. I want to avoid exposure to the novel coronavirus if at all possible. That even means having groceries from Costco delivered to our house where we disinfect before putting them away in the kitchen.

It especially means avoiding medical facilities.

Two weeks ago my breathing became quite labored. As the tree pollen counts elevated, my asthma flared. I needed the rescue inhaler two to three times a day. The steroid inhaler couldn’t control my asthma any longer. With Covid-19 attacking the lungs, I desperately wanted my breathing to improve just in case.

I then remembered asking my primary care doctor for a stronger asthma inhaler last June. Fortunately, I stored the filled prescription in my drawer for the combination steroid powder inhaler. It took about five days after starting treatment before I could breathe easily without the rescue inhaler.

In the back of my mind I wondered if the inhaler photosensitizes my skin. I still use ultraviolet light treatments at home to mainly control my atopic dermatitis. I didn’t want to create a new problem when solving another.

My skin slightly burned from the first phototherapy treatment after starting the new inhaler. I backed down the dose about a third for the next treatment. Again my skin burned. And again the next time. I concluded that the asthma medication photosensitizes my skin.

In the back of my mind I wondered if the inhaler photosensitizes my skin. I didn’t want to create a new problem when solving another.

I’m taking a break from phototherapy for a few days to let my skin recover. I don’t want to stop my asthma medication since it’s working so well. I’ll try to step down my dose even more to see if I can still control the rashes on my skin on half or less of the dose I used before.

I’ve missed my dermatology check-up appointment already due to the pandemic. Good thing my doctors are quick to reply to messages. Hopefully, I can control my asthma and eczema without the need to see them in person.

Continue reading →
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psoriasis, Psoriasis Treatments

The Home Phototherapy Unit Arrives!

A few weeks ago the narrowband ultraviolet B light (NUVB) panel finally arrived. My dermatologist and I decided to try home phototherapy after determining that Tremfya (guselkumab) alone would not adequately suppress my psoriasis or address my atopic dermatitis.

I gave up, though, after my health insurance denier provider rejected the initial prescription, the first appeal, and then the appeal to the denial. I know I shouldn’t stop fighting, but I figured I needed to choose my battles wisely. I lost this round and that was that.

A Gift Arrives Via Freight Truck

As the delivery truck pulled up to my driveway I thought about how a couple dozen people generously gave to the GoFundMe campaign started by a parishioner at church. The over four thousand dollars raised allowed me to order, and now take delivery, of a Daavlin Series 7 eight bulb NUVB panel with dosimetry timer.

The over two hundred thirty pound wooden box initially looked like a crudely constructed coffin. But inside contained another tool in the arsenal to combat inflammatory immune responses on my skin. Here I’m holding the protective grills that install over each pair of six foot light bulbs:

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Continue reading →

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psoriasis, Psoriasis Treatments

2nd Dermatology Visit: Waiting and Delaying Treatments

This time I made it on time for my dermatology appointment. After the first visit to my new dermatologist almost turned out a disaster, I made sure to double check the appointment time. Yes, I needed to make it to the clinic on Tuesday at 10:00 a.m. for this second visit.

You’d think that after four decades of seeing doctors I would feel comfortable at clinic appointments. But in those few minutes I spend with the dermatologist decisions will be made about my health that will impact my life for weeks to come.

With a new dermatologist and healthcare provider system I felt intense anxiety for that appointment. My elevated blood pressure told the same story: seeing the doctor is a stressful event for me. Even so, I overcame my anxieties to closely collaborate with Dr. Carroll on what’s next for my skin treatments.

Getting Acquainted

Thankfully, the doctor visit went much better than I expected. At the outset I spent a couple minutes getting acquainted with Dr. Carroll. I first shared my psoriasis column on Everyday Health, The Itch to Beat Psoriasis with her. I also talked about my volunteer work with the National Psoriasis Foundation. Dr. Carroll shared how she studied under a prominent psoriasis researcher and physician and supported the Foundation’s efforts. She explained her philosophy of putting patients first, even if they are late like I was last time.

I thought the exchange helped to break the ice and develop rapport. I hoped that by sharing some of my life with psoriasis she could trust I knew my skin conditions well enough to input on treatment decisions. I also felt more comfortable that, based on her training and experience, she could manage the challenging case that is my psoriasis and atopic dermatitis.

Besides getting to know a new healthcare system and my new dermatologist, I needed to consult with her on a couple issues looming for my health and skin care.

Tremfya Adjustment

I’m convinced now that the pattern I saw emerging with my psoriasis on Tremfya treatment at week 24 continues. The normal dosing schedule for Tremfya is one injection every eight weeks. By week six or so, however, my psoriasis tends to begin to worsen. It takes two or three weeks after the injection to get back to a more controlled state–if at all.

I would like to try taking it every 4 weeks, but that would double the injections to 13 annually. With a cost of ~$10,000 per injection you can do the math. Every 8 weeks is about 6.5 injections per year, with every 6 weeks about 9 injections. Continue reading →

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psoriasis

One Way to Bypass Insurance Denials

Today I still do not have a home phototherapy unit. Almost five months ago my doctor prescribed one for me. Sadly, explanations and appeals made no inroads with my health insurance provider. I documented the insurance saga with Western Health Advantage (WHA) in a recent post. In sum, they denied coverage, my dermatologist and I appealed, and they denied the appeal of the denial. Simple.

The next step to procure a home phototherapy unit would need to bypass insurance coverage.

On the Lookout for Used Phototherapy Units

The dermatologist who originally prescribed the phototherapy unit suggests I search on Ebay or Craigslist for a used unit. Although I did not like the idea at first, I dutifully began looking online for deals. Nothing popped up that I felt I could trust. Besides, I still felt too frustrated about not getting the new unit I set my heart on that I searched half-heartedly.

Then a kind soul emailed me that they read my blog and wanted to offer me their used unit. I began to research the unit to see if it would be a good fit. After consulting my dermatologist it looked like it would need new bulbs that might not fit the older unit. I would need to do more investigating. [If you are interested in their unit please notify me.]

I resigned myself to dip into savings or ask my parents for the money needed for new narrowband ultraviolet bulbs (NUVB) for the used unit, or a stripped down new unit with four or six  bulbs. Even so, I still dreamed of the ten bulb unit with a center and side panels that cost around four thousand dollars after tax and shipping.

A “Go Fund Me” Surprise

A couple months back in the midst of processing a FedEx delivered rejection letter I joked with Lori that I would start a Go Fund Me campaign. I’d never started one, and had only heard about it. My upset did lead me to think of ways to purchase the phototherapy unit apart from insurance. But I did not feel comfortable asking others to give toward it. My pride didn’t let me really consider it.

At a dinner recently I shared my frustration regarding the insurance denials with a couple. I knew they cared about my struggles with psoriasis and didn’t mind listening. We enjoyed an evening out talking and catching up about recent life events. In passing, I joked about the Go Fund Me campaign.

That evening I received a surprise email asking me if it would be okay to send a Go Fund Me campaign to people we knew. They took my picture from social media and set it up. I only needed to give them the green light and check the information on the description before launching it.

If someone who cared about my condition wanted to help me raise money for a phototherapy unit I didn’t want to discourage them. They titled the Go Fund Me campaign “Medical Treatment Fundraiser for PH.” (At church they call me “PH” for Pastor Howard.) The gesture really touched my heart:

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So far the campaign has raised over 70% of the cost of the unit my doctor prescribed. I will soon purchase that unit after giving it a little more time.

Encouraging Support

I am still grateful for my health insurance provider. I will not forget the quarter of a million cost to them for my son’s three week hospital stay. Or for covering my biologics and specialist visits. But this situation with the home phototherapy unit taught me that I cannot expect insurance to cover everything I need for my medical care–even though I argue they have an obligation to.

Instead, I’m touched by the love and generosity of those who started the campaign on my behalf and others who reached out to me with words of support. I’m also grateful for the friends, church members, family, and others who gave in the first couple weeks of the campaign. Their gifts small or large encouraged me enormously when I felt down about my state of psoriasis activity and treatment.

I still need phototherapy treatment on top of topical ointments, biologic injections, and small doses of cyclosporine pills. It’s a lot of disease activity to address, and I know I can’t do it alone. The Go Fund Me campaign reminded me that I’m definitely not alone. People are praying for me, willing to support me generously, and care about my well being.

One way to bypass insurance denials for treatment? Have a friend invite a community of friends and family to pray and contribute as they feel led to.

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