Ground Zero
This year, 2026, had already presented me with many more challenges than I expected by the time summer rolled around. For months, my husband and I had been looking forward to a two-week vacation in Kauai in early January. Good friends joined us for the first week and we enjoyed the last week there by ourselves. We lucked out with fabulous weather. Temperatures were mostly in the 80’s and it only rained two days, the day we took our friends to the airport and the day we left.
My mother had been slowly succumbing to dementia and both her physical and mental health declined significantly during the few months prior to our trip. Fortunately, we helped my parents transition to an assisted living facility in the spring of 2025, so my dad had more help with caregiving. He called me on the second morning of our trip to tell me she had passed away earlier that morning. While not unexpected it was still emotionally devastating. I was relieved she was no longer suffering but the grief I experienced was much deeper than any of the anticipatory grieving of the last several years. My dad and I had already discussed this possibility prior to our trip, and he told me if she passed away while we were gone, he did not want me to come back because there was nothing I could do. He really wanted us to complete our vacation.
I had planned hip surgery in early February to clean up a frayed labrum. It was a nagging injury that happened a year ago and kept flaring up, causing pain and disruption in activities. The procedure went well and because it was a minor arthroscopic surgery, the side effects were minimal, but I was still on crutches and in a brace for a month and then actively engaged in physical therapy to get back to baseline.
My mother’s celebration of life was planned for early April. After recovering from surgery and returning to work, all my extra time went into planning the celebration, writing the eulogy, and creating a video for the ceremony. We drove 330 miles to where my parents lived and had a very busy three days with family and friends including a family dinner the evening of the celebration.
I have autoimmune disease, both spondyloarthropathy and Crohn’s. I am on immunosuppressants and while my symptoms are reasonably well managed, I need to be very careful about exposure. My immune system is rather robust, so I am not concerned about recovering from upper respiratory infections however my body often attacks other systems when it is fighting an infection, and these secondary areas of significant inflammation often cause more problems than the original infection. In the past I have experienced secondary inflammation of my heart muscle (myocarditis), my thyroid gland (thyroiditis), and a permanently elevated partial thromboplastin time (PTT) resulting in my blood taking longer to clot than it should. This causes easy bruising and heavier bleeding than usual. I also experienced a significant systemic inflammatory response to the original COVID vaccines, so I have not received any vaccinations since 2021. For these reasons, I am masked when I am indoors except on very rare occasions when I am with friends who know my situation, have had minimal exposure to sick people, and are themselves healthy.
Unfortunately, during the trip for my mother’s celebration of life it was just not possible to be as diligent as usual, resulting in significantly more exposure. As I had feared, I ended up paying dearly for that exposure. About ten days later I developed a wicked sinus infection and went to urgent care where I was started on antibiotics. This seemed to take care of the sinus infection resulting in decreased headache, sinus congestion, and fever but I started to experience a variety of other unpleasant symptoms. I was light-headed and weak if I stood for more than five minutes or sat up for longer than about 30 minutes which meant I was spending most of my time in bed. I started losing weight rapidly and ultimately lost twenty pounds over a month. I had extreme difficulty with temperature regulation, either feeling overheated or so cold I was shivering. My skin became so dry it was flaking and my hair started falling out. I ended up missing work for the entire month of May and came back on a reduced schedule to make sure I did not have a relapse. While I could not get a doctor to confirm what happened, I know I had another episode of thyroiditis. This happened previously and I experienced the same set of symptoms. While my thyroid labs remained in the normal range they shifted in a direction that would be consistent with this condition. There is no treatment for this, you just need to wait it out. It can take several months to feel better and up to a year to return to baseline so I was very cautious about energy expenditure and exposure as I returned to normal activities.
During all of this, I had been concerned about my husband. He had been experiencing low energy, weakness, and sleeping a lot more than usual. He has a complicated medical history that includes gastrointestinal (GI) bleeding in 2017, both prostate cancer (treated successfully with surgery) and non-Hodgkins diffuse B-cell lymphoma (six chemotherapy treatments resulting in remission) in 2018, multiple small blood clots in both lungs in 2020 treated with a blood thinner, A-fib in 2021 treated with a beta-blocker, and open heart surgery for a mitral valve repair in 2023. His labs had been mostly within normal limits however his red blood cell count (RBC), hematocrit (Hct), and hemoglobin (Hgb) had all been steadily dropping for over a year which made me concerned about current GI bleeding. From October of 2024 to June of 2026 his RBC dropped from 5.17 to 4.72 (normal range 4.35-5.7), his Hct dropped from 48 to 42 (normal range 41-50), and his Hgb dropped from 16 to 14.1 (normal range 13.2-17.2)
He had two episodes of food poisoning in summer and fall of 2025, the second of which produced bloody diarrhea. Because of this his primary care provider (PCP) ordered a colonoscopy that was done in January right after we returned from Kauai. It was considered normal. I wanted her to order an endoscopy at the same time because the prior bleed was in his stomach, but she did not do this and did not see a need to get one later. Antibiotics appeared to successfully treat the food poisoning.
Due to my husband’s ongoing fatigue his PCP did check his iron which was low. His ferritin level, a measure of long-term iron stores, was 22 in December of 2025 (normal range 20 to 230). He started taking oral iron, but this did not make a substantial difference in his ferritin level. Iron can turn your stool black, masking any black tarry stools that can be an indication of GI bleeding. She asked if he wanted to get an iron infusion and while I was not opposed to this, I wanted him to have a GI consult to make sure he was not bleeding in his gut before just giving him a higher concentration of iron which might mask bleeding and delay appropriate treatment.
Through spring and into summer my husband’s energy continued to decline. In June, he had two days of severe stomach pain and was in bed during that time without eating at all. After that, his appetite dropped sharply and he started losing weight rapidly, about 10 pounds a month. I was very concerned. He did not want me to communicate with his PCP and I honored and respected that, but as a nurse practitioner I did try to coach him and provide him with “sound bites”, hoping he could get a GI consult.
I knew something was seriously wrong. As a nurse practitioner with over 40 years of experience, I have the knowledge base and assessment skills to evaluate tests, consider current symptoms and medical history, and formulate possible diagnoses. But as a spouse, I have lived with this man for half my life. We are in synch and I know when he is doing well and when he is struggling. I was frustrated that in my opinion his medical providers were minimizing or discounting his symptoms. They stated fatigue has many causes, which is true, but he also has a history of both GI bleeding and lymphoma. While his labs remained normal, they were steadily trending downward, his ferritin was low, and he had two days of severe abdominal pain. To me this warranted more immediate and exhaustive evaluation and I felt helpless getting him the care he needed.
My area of expertise is psychiatry and mental health so I do not have lab tests, X-rays, or CT scans to help me diagnostically. I need to talk with patients and family members and listen to what they are telling me about their current symptoms, history, and what they think is contributing to not feeling well. I was concerned some of his care providers lack of attention was age discrimination. I have certainly faced this in my own care as I have aged. The incorrect assumption on the part of many health care providers is that as we age, we naturally experience increased pain, fatigue, deconditioning, and declining physical and mental health. This is not true and I was incredibly stressed trying to figure out how to advocate for him to get the care he needed. I did not consider taking him to the emergency department (ED) because his labs were normal in June and my experience in this situation is patients are sent home and encouraged to follow-up with their PCP.
My husband had a virtual appointment with his cardiologist on Thursday July 16th and during that appointment he asked her to order a GI consult. She did, but it was scheduled as a virtual appointment and six weeks away. Two days later, my husband was complaining of extreme fatigue and looked incredibly pale. I was so concerned he was bleeding I had to threaten him to get him in the car to go to the ED. We arrived on Saturday afternoon. On arrival they asked why he was there and he just said extreme fatigue. I had to add the significant medical history including my concerns about bleeding for them to take action. He had blood drawn, an electrocardiogram (EKG), a chest x-ray, and a CT scan of his chest and abdomen with contrast. In three weeks, his RBC had dropped to 3.07, his Hct had dropped to 27, and his Hgb had dropped to 8.4, so he was indeed bleeding. The CT scans showed a mass in his intestines along with some enlarged lymph nodes. A biopsy was needed to determine whether the mass was colon cancer or a recurrence of lymphoma. When the physician gave us the results, my husband said, “Kathy is vindicated”. For me, this was never about being right, it was about getting medical providers to take his symptoms seriously. He was admitted to the hospital with a plan to stay for approximately three days and have a colonoscopy with biopsy if the tumor was accessible with the scope. I felt relieved that he was where he needed to be to get care, extremely angry at his providers for dismissing his symptoms, guilty for not taking him to the ED sooner, blindsided by the possible relapse of lymphoma, and just really exhausted.
I have experienced a tremendous amount of invalidation and dismissiveness of my symptoms over the years with my autoimmune disease. I began having symptoms in my 20’s but was not diagnosed until age 52. I was hopeful my husband’s situation would be different. He was no longer just experiencing fatigue; he had altered lab values and test results to indicate a definite disease process responsible for his symptoms.
To be continued…
This piece will be in multiple parts since my journey is still in progress. While each individual’s experience is unique, there are parts of my story that anyone having an extended medical crisis will relate to. One goal in documenting my experience is to try to make sense of it, something that up to this point has been elusive. The other goal is to share my story in hopes of helping others navigate our complicated and ineffective medical system. I will not identify institutions or individuals because this is not about finger pointing, outing people, or blame, it is about analyzing the systemic issues that compromise care and hopefully discussing ways to improve the system. While objectivity is extremely difficult in this situation, I will do my best to write with authenticity and integrity.
Until next time, stay safe, be well, be kind to yourself, support each other, and spread the love.
Photo by Kathy Kroening. Seattle, WA. May 2025
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