Month 7: Setbacks

03/14/2025

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Debra's God Story   3/14/24 

A lot has transpired for John and I in the last year, and I thought it would be good to share with you about our journey thus far.

A Bit of Background

Around 2010 I started to have a chronic cough, some increasing breathlessness with exercise and pneumonia that took about 4 months to recover from. By 2014 the symptoms and recurring pneumonia caused me to begin seeing pulmonologists in Reno. I was treated for asthma with various inhalers that were ineffective. In 2016 my doctors saw a lung mass which led to many tests and procedures without a definitive diagnosis. Eventually a Pulmonary Nurse reviewed my information and gave me the diagnosis of Idiopathic Pulmonary Fibrosis (IPF). She told us, “You are just going to get worse and there is no treatment or cure ...that was quite a blow, to say the least. I then did a self-referral to the University of California in Davis’ (UCD) Interstitial Lung Disease department and was seen within the month.

At UCD I had a thoracotomy of my right lung with 4 biopsies which gave a definitive diagnosis of IPF. In essence, my lungs are “fibrosing” or scarring which doesn’t allow them to function as they should and as the disease progresses, they won’t work at all. Since I have never smoked, drank or done illicit drugs, this was surprising to me. My pulmonologist said it’s called idiopathic because they don’t know what causes it. Up until last year, I have been able to lead a fairly normal life with modifications and low flow supplemental oxygen for exertion at our altitude. My routine lung testing showed decline, but a slow decline. I started taking drugs that showed a possible 20% reduction in IPF progression. I began having significant dangerous reactions to the drugs and had to stop them. There were also newer drugs that were being evaluated in clinical trials that I participated in but with no success. I stopped the clinical trials in January 2023.

The positive support I had from the management and staff while I was working at Banner Lassen Medical center during all of this was a huge motivation to me and my husband. Being able to continue to do the job I loved as their RN case manager was such a gift. On January 11, 2023, I had an acute exacerbation (a sudden acceleration of the disease that leads to a significant decline in lung function) which changed the trajectory. I became quite ill with significant decline, and my UCD pulmonologist recommended I meet with the lung transplant team at University of California in San Francisco (UCSF).

 I wasn’t on board at first but agreed to going through the considerable work up to determine whether I was a candidate for a lung transplant. In the meantime, because I was still too sick to work, I retired on April 25th, 2023, after 40 years of nursing, the last 15 years at Banner Lassen Medical Center. In November after all the testing, the transplant team considered me to be between 1 and 2 years out from meeting the criteria of being ready for the lung transplant wait list. The pulmonologist stated I need to be healthy enough to survive the operation, which I am, but sick enough to need the transplant to live. I was very much in agreement. To be a candidate for the lung transplant list the threshold is a lung capacity in the 30% range. Because IPF can change quickly, it was explained that this is a general target.

Where We Are Now

On February 5th of this year, I contracted a respiratory virus and although I recovered within 10 days, my oxygen saturations declined considerably to a point where I began to require 5 to 6 liters at rest and 9 liters for mild exertion. I had my routine pulmonary function test at UCD March 5th, which showed a considerable decline since the one done in November. In November of 2023 I was at 42% but in less than three months my lung capacity dropped to 33%.

I contacted my UCSF RN case manager and let her know what was going on. The team wouldn’t have reviewed my information from UCD until the day before my scheduled virtual visit on April 4th but due to my rapid change she stated the doctor would want an in-person appointment. She scheduled a cardiology consult for March 12th, then a cardiac catheterization to quickly follow (this is just another step required to be put on the list for a transplant), along with more lab work with the intent of formally placing me on the transplant list after my pulmonary transplant physician visit.

We have been told that once I am officially on the list the normal wait time for a lung transplant is 4 to 6 months, of course this can be sooner or extend out depending on a donor lung availability. To say the least, John and I are a bit overwhelmed now but trusting God. Currently, because of my need for a considerable increase in oxygen, I am at home now using a high-flow oxygen concentrator. I also have oxygen tanks that will enable me to take short trips out of the home. By the way, I am very open to having company while I am waiting for my miracle.

My Support Group

In all of this, God has used my beloved husband to keep me grounded. He has taken over many of the responsibilities at home without complaint. He does all the driving and has been a constant source of encouragement. John helps me refocus when necessary, and he is involved in all my appointments. He is diligent in keeping me healthy in mind, body and spirit. I am so blessed that he has been in my life for going on 39 years. I truly could not do this without him, and God knows this.

I am also very blessed by our children. Virginia and Ben and his wife Megan have continued to pray for us and call frequently to check up on me/us. FaceTime and texting are wonderful for reaching out to see our kids and grandkids who are in Montana and Vallejo. My mom in Napa also keeps in touch via phone and texting and I know she is also praying.

Lake Almanor Community Church, where John has been a pastor for 24 years, has supported us so much in so many ways. The elders and staff have allowed John the time off to take me to San Francisco and Sacramento as needed for all the medical appointments over the years. Our Clear Creek neighbors have also been a wonderful support for us, as well as distant friends who pray for us and visit via FaceTime. We are so very blessed.

A Faith Journey

I have grown so much through this journey. The love for my Savior Jesus has grown and I have experienced a deepening awareness of his Presence and care that has truly been worth the challenges. My faith and trust are being refined almost daily. Although the journey hasn’t by any means been enjoyable, I know my home in heaven is waiting at the appointed time for me. I don’t feel like God is quite done with me on earth yet and I believe this next step of my journey may be the most important. God knows! We continue to pray for a supernatural healing of my lungs, but however God sees fit for me, it truly is “well with my soul”.

What is to Come?

UCSF requires a primary and secondary care provider for me after the operation while I am healing in San Francisco. This is non-negotiable. John will be primary and Holli Satterfield, a dear friend of many years, has volunteered to be the secondary care giver. We also are blessed to have a tertiary care giver, Kelley Wulff, who is my cousin’s wife. They are currently being trained for their care giving assignment. God has gone over and beyond in His provision! We are also thankful for many others who have volunteered to be caregivers. This means we are another step closer to being put on the wait list for a lung transplant!

Once we are on the list and get the call that lungs are available, we will have 5-1/2 hours to get to UCSF. The surgery is 7 to 10 hours on average. I will be in ICU for about a week, intubated (on a ventilator) for 3 of those days then moved to the step-down pulmonary unit for about another week. We are REQUIRED to stay within 30 minutes of the hospital after the lung transplant, with no bridges in between, for 6 to 8 weeks. I will have daily appointments for necessary medical care, labs, imaging, weekly bronchoscopies, etc. which is where the care provider is vital to my recovery.

We met virtually with the UCSF Financial Counselor who detailed the costs of the transplant operation, the lung rejection/immunosuppressive medicines, the costs of housing in San Francisco for the recovery period, along with food, parking and other expenses we don’t even know about...and it is mind boggling. Many of the medicines are very expensive and lifelong, specifically the anti-rejection medications. One of our dear friends in Clear Creek, Eileen Sadar, has volunteered to be the point person for a GoFundMe campaign that will begin soon. We will continue to keep everyone posted on the fundraiser or needs we may have as they arise. Until then we deeply appreciate your continued prayers and support.

In the love of God, Debra and John

Debra’s Phone (texting only as talking causes coughing episodes which drops O2 levels) 530-375-0439

Home Address
666-910 Hamilton Road Clear Creek, CA 96137

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