Our Journey

MIKE and GAIL, OUR JOURNEY

By Gail K. Kachnycz 08 April 2023; revised 12 April 2023

     Who are Mike and Gail, and how did we come to encounter chronic illness and care-giving? It is hard to compress over 30 years of marriage into a few paragraphs. Although chronic illness has had an impact on other aspects of our relationship, I will focus on Mike’s physical symptoms, Gail’s role of emotional support, and the effect on our employment and finances.

     In the late eighties, we met in our church, a charismatic evangelical congregation in the heart of Philadelphia, PA. While we were in a team preparing street drama for a mission trip, we discovered we were attracted to each other. We were both in our mid-thirties, and had known each other as friends for a few years, so our courtship was short. After four months Mike proposed. Four months later we had a lovely June wedding with family, friends, and church members. It was a great celebration; think My Big Fat Greek Wedding, but insert “Polish” in the title.

     Our relationship always included Mike’s health issues. We first declared our feelings just before Mike was admitted to the hospital for surgery to determine the cause of severe abdominal pain. I was able to see him after visiting hours. Since I was a CRNP, I simply put on my white coat and walked through the hospital halls to his room. The next day his gall bladder was removed, and since he was greatly improved, we thought the problem was solved.

     Mike previously had surgery to address sleep apnea. To relieve obstructions to his airway, his tonsils, adenoids, and uvula were removed. It seemed this health concern had been successfully treated. However, on our honeymoon Mike experienced dizziness, shortness of breath, and tremors. This happened as we traveled by car through the Mont Blanc Tunnel through the Alps from Italy to France. The decreased oxygen at high altitude was compounded by exhaust fumes in the long tunnel. This severely compromised his oxygen absorption, resulting in his symptoms. This foreshadowed respiratory issues that would worsen over time.

 

     When our first son was 10 months old, he was discovered by Mike in a near-SIDS episode and revived with vigorous stimulation. Testing showed that both Mike and our son had extremely high levels of endorphins in their cerebral-spinal fluid. Endorphins are the body’s “natural narcotics,” responsible for the “runner’s high.” However, just as an overdose of opiates causes breathing to cease, the high levels of endorphins were resulting in sleep apnea for both Mike and our son. While they were awake, they were stimulated by their level of activity, but when they were asleep they could succumb to the effect of the endorphins to stop their breathing. Both were prescribed Naltrexone, which is a long acting opioid blocker.

     Mike’s apnea continued to worsen. In 1997 he had major reconstructive surgery to his mouth and jaw. A tracheostomy, an opening in the neck directly into the wind pipe, was performed to assure that swelling or other factors in the healing process would not block his airway. The tracheostomy remained in place for several years. It was closed only when erosion of the tissues around it threatened to invade blood vessels which would result in bleeding that would be life-threatening.

     Meanwhile, digestive issues had returned. The ducts into Mike’s intestines that supply digestive fluids were constantly contracting in spasms that caused excruciating pain. The only medication that was effective was narcotic, so the Naltrexone was stopped and opiates were prescribed in the form of skin patches. However, this resulted in depressing his breathing to the point that oxygen was prescribed. His apnea was severe and his pain was unrelieved. In 2003, his primary care doctor learned of a pain control method that was non-narcotic. The drug was Nubane, but it was short-acting and inactive if given orally. A central IV line was inserted so Mike could receive small doses of the drug continuously by a medication pump (similar to an insulin pump). This literally gave him a new lease on life. His pain was successfully controlled without opioid side effects or drowsiness. This method of pain control was used from 2003 through 2020. The trade-off was the risk of infection due to the position of the IV in a blood vessel leading directly to the heart. Mike gave meticulous attention to keeping the site clean. The IV required routine replacement every two years, but Mike experienced only one infection of the IV in 17 years.

     Although Mike was experiencing pain relief and freedom from the drowsiness and side effects of opiates, the underlying medical conditions had worsened over time and the years of treatment with strong medications had taken their toll. In addition to sleep apnea and digestive spasms, Mike’s diagnoses now included fibromyalgia, migraines, kidney stones, Chronic Obstructive Pulmonary Disease (COPD), Congestive Heart Failure (CHF) and pulmonary hypertension. Occasional spasms of his vocal cords made it feel like he was breathing through a straw. Nausea, and dental problems, possibly related to the jaw reconstruction, limited what he could eat. Food and fluids often leaked into his lungs due to difficulty swallowing. He also had disc problems and required back surgery twice.

     During the time 2003 to 2012, Mike continued to work as an administrator for an agency that provided housing and day programs for people with physical and intellectual disabilities. I was working four part-time jobs as a CRNP. Since some work could be done by computer, and in-home care was a night shift, this accommodated the needs of a family with young children in 2003. By 2012, our older son was in college and our younger son in high school. However, Mike’s health had deteriorated further, and in 2012 he had developed leg wounds due to poor circulation and swelling. His employer initiated short-term, and then long-term disability status. When disability benefits ended, this resulted in a reduction in income and loss of medical insurance. We paid for COBRA medical insurance, and I increased my night shifts with the home care agency. It was during this time that I myself gained weight and needed medication to control high blood pressure. After a year of working three night shifts, one day shift and 15 hours of consulting work per week, the Lord provided the opportunity for me to work full time as a school nurse practitioner. No more night shifts, and medical insurance was an employee benefit!

     Mike and I had always had non-traditional roles. Mike is a foodie and loves to cook. He took over shopping, cooking, and other household responsibilities. I took over yard work which included mowing the lawn and tending the planting beds (basically defending against having any and all flowers or vegetables eaten by deer and groundhogs!). We also had an above ground pool. Once Mike had the IV port, he could not attend to the pool, so I managed this as well. When Mike went on disability, we were not sure if we would have to sell the house. We gave the pool to someone who dismantled and removed it for free. This also decreased the yard maintenance for me. It was win-win-win all round.

     In 2018 Mike’s congestive heart failure worsened. His cardiologist tried every drug regimen available at that time without success. In November 2018 the doctor recommended hospice care due to the severity of the cardiac condition. After careful consideration, and discussion with the hospice agency about his novel pain management with Nubane, Mike signed the contract for hospice support. Hospice status projects a life expectancy of 6-8 months. This was the reality check, or wake-up call, for both Mike and me, but each in our own way. Since going on disability, Mike had been receiving visits from our lead pastor and another elder from the church, but they now had deeper significance. I was still working full time at the school. The agency contracting consulting work that could be done on computer was no longer in operation, so I was looking for a second job. I began to see our pastor and his wife every few months for pastoral care and prayer. 

     In August 2020, I retired from a nursing career of 44 years. The last two years, working at school during the week, and home care for Bayada every Saturday, was becoming too physically demanding. In addition, there was the responsibility of house work and yard work. Since the Social Security and retirement benefits were available, it seemed the Lord’s provision for me to be at home and more available to support Mike emotionally and spiritually. This was a very timely change.

    Throughout his illness, Mike had always been a “zebra,” that is, someone whose medical condition did not fit the usual picture. He was used to advocating for approval for novel treatments and medications. Due to his many years of experience of dealing with Medicare for people with disabilities, he knew the process required persistence. In July of 2021, the hospice agency withdrew support services. Their explanation was that Mike was being discharged, since he had survived 30 months, rather than only 6-8 months, so Medicare would do an in-depth audit. Mike did file appeals at all three levels for review. At the point the second appeal was filed, we were in contact with our Federal Congresswoman and received advocacy services from her Medicare Liaison. However, hospice service was not reinstated. The agency responsible for the third appeal stated they did not receive his application. Mike’s condition continued to deteriorate, and his Primary Care Provider referred him to be re-evaluated for hospice in June 2022. He was evaluated by two nurses. Both indicated that based on their experience, he met criteria for hospice and the level of pain management he required could only be provided by hospice services. However, the hospice agency declined to admit him and gave no reason for this decision. Mike requested documentation of the evaluation review, but no records were provided. The prayers and practical support we received from our church fellowship sustained us during this exhausting process, and we were most grateful. We still cherish their care, concern, encouragement and prayers, as our journey continues. 

     In spring of 2021, while Mike was still receiving hospice services, we both remarked that although we were quite familiar with the medical field, we were having challenges in navigating the demands posed by chronic illness. We began to think that sharing our experiences might help others. The idea of a blog to share practical and emotional/spiritual supports from a Christian perspective grew from these discussions. We hope that by sharing our experiences, you may be able to better plan for what lies ahead, and your journey on the path of chronic illness and care-giving will be easier than ours.