Jim's journey started with what we thought was a viral cold in September 2020. Due to COVID precautions he was tested for COVID but not treated. After a negative test and symptoms still present they were still reluctant to treat. Eventually he was prescribed a variety of meds and the cough stopped but within a week extreme fatigue set in, he felt lightheaded and his vision seemed off. He was unable to make it through a work day for a week or more. He started to feel uncomfortable hiking with Owen so he stopped that. We finally went into the ER concerned about heart issues. After a battery of tests they determined his heart was fine and thought the virus was just taking its toll on him. About a week later on October 3, 2020 he woke up with double vision and vertigo. We once again went to the ER. He walked in leaning on me, and left a day later using a walker. Our local hospital thought it was some sort of neuropathy and referred him to a opthalmologist. That opthalmologist turned out to be very astute. He confirmed Jim's double vision but after watching the way he walked (his right leg was starting to not respond immediately when he used it) he told us Jim needed a neurologist. His thought was that Jim had Guillain Barre syndrome. October 25th we met with a Neurologist is Petoskey. He examined Jim and they admitted him right away. At this point he had double vision, vertigo, balance issues and ataxia of his lower limbs. Blood work, CT, MRI and a lumbar puncture was done. They diagnosed Jim with a variant of Guillain Barre called Miller Fisher syndrome. This is an autoimmune disorder brought on most often after a viral cold. The diagnosis was made after ruling out a number of other possibilities. He was treated with a 5 day course of infusions of IVIG. The vertigo went away but all other symptoms stayed the same. Nothing worsened and we were told it could take a year to get back to normal. Around mid November Jim woke up with worsening eyesight, nystagmus and the vertigo was back. We followed up with his neurologist who immediately stated that the diagnosis was wrong. He didn't know what it was but it wasn't MFS. He once again ordered more tests. And told us it was likely one of three things...one of which meant Jim had cancer. We left nervous, scared and waiting for the tests to be scheduled. On November 30, while working with his brother Eric in our home office, Jim had a grand mal or tonic clonic seizure. After the ambulance got him to the local hospital I was insistent that he be transferred to Petoskey. I wasn't sure if my request was granted until I got a call from Jim while he was in transport to Petoskey. There they performed all the tests that we were waiting to be scheduled. This time they did a full body CT. Because of that they located a mass in his lower right groin and an abnormal finding in the left testicle. An ultrasound found what was likely a small tumor in his left testicle. They diagnosed him with paraneoplastic syndrome and sent him home. They wanted us to follow up with a surgeon to remove the mass in his groin. I will never understand why they didn't remove it when they found it given the diagnosis. Jim had actually found the mass a couple months earlier and it was assumed it was a hernia. They had scheduled surgery to have the "hernias" repaired, but that had been postponed due to his new neurological symptoms. About a week later they removed the mass and sent it out for pathology. While waiting for the results Jims symptoms began to get worse. By this time he was wheelchair dependent, he still had nystagmus and double vision. His ataxia was worsening and had now started to effect is upper limbs. He was sleeping almost constantly and was having odd behaviors while asleep. He talked, moved and made odd breathing noises. I began recording them for his drs. I felt like something was off with his breathing. While Jim had originally wanted to keep his care local, at this point we had lost faith with the local hospitals. We reached out to Mayo Clinic. On December 16, while still waiting for pathology, Jims breathing worsened. He sounded like he was underwater. I woke him asked him to cough and take deep breaths. He seemed a bit better after that. But shortly after I didn't hear him take a breath for a bit. Our pulse oximetry showed his oxygen at 60 and heart rate was 40. I woke him again and unable to move him myself called an ambulance. Once at the hospital his stats improved, but they kept him overnight in case he had aspirated in his sleep. I spoke with him the next morning and at dinner time and he was himself. The following morning he didn't answer his phone. A nurse called and said they were concerned about his breathing. She said they were trying to transfer him to a better hospital because they weren't equipped to deal with a nuero patient. I expressed that I did not want him in Northern Michigan. They struggled all day to find a hospital for him. In the early evening they called and asked if I would come up to the hospital because they wanted to intubate him. When I arrived I immediately agreed to the intubation. While they were preparing I was left alone with Jim. In that short window of time he went into cardiac arrest and they called a code blue. They revived him and finished the intubation. I consented to a arterial and central line. Both were needed to monitor his blood pressure and deliver meds to keep his blood pressure up. That night he coded twice both times were the 2 times I was in the room. After a few hours there I went home feeling scared and helpless. And to tell our kids what had happened and what uncertainty the night may bring. We still had not found another hospital. Around midnight I received good news. Jim was stable at the moment and was being admitted into the Neuro ICU at Henry Ford hospital. He was being airlifted within the hour. They allowed both Jim's mom and I to be present with him until he was transferred. On December 19th he arrived at HFH. After hearing his medical history they got to work. I spent all that day (Saturday) scanning any and all medical records I could find. I emailed them to the attending Dr at HFH. By Monday the pathology had come back and confirmed that Jim had germ cell cancer. Paraneoplastic syndrome (PNS) is a very rare autoimmune disorder. What happens is that a person gets cancer. The body goes on attack by creating antibodies to kill the cancer, however these antibodies often confuse healthy body systems with the cancer. The result is that the antibodies also attack and damage those healthy systems. In Jim's case the antibodies discovered were called ANNA-2 or Anti-Ri. These antibodies attacked the tumor in his testicle and actually killed it. When HFH removed it a couple days after he arrived it was found to be a regressed tumor. But before they killed it it had spread to that one lymph node in his right groin. The antibodies also began to attack his brain stem, causing encephalitis. Past MRI's showed a normal brain. But the one done at HFH in December showed damage in his pons and medulla. This area of the brain controls respiratory drive, sleep, heart rate, blood pressure, body temperature, swallowing, nerves that control eye movements among other things. While at HFH Jim had trouble breathing, maintaining his heart rate, blood pressure, and body temp. He was retaining fluid. His nystagmus worsened and he was hallucinating. He also had something called myoclonus, which is uncontrolled jerking of the limbs. The main treatment of PNS is to treat the cancer. HFH started with removing the left testicle. While they waited for the pathology they began treating the encephalitis. He received 5 days of pulse steroids as well as a total of 7 rounds of plasmapheresis. He did start to show clinical improvement with these treatments. The autonomic issues began to resolve (Heart rate, blood pressure etc). His stay at HFH was a roller coaster for us. He made improvements but also had set backs. All the while we could not visit because of covid protocols. Some of the nurses were great at lip reading, some not so great. We FaceTimed mostly with me talking and him using signals or mouthing things. After awhile he could write a few things on paper. They attempted to extubate him twice. The first time last only a few minutes, the second a few days. The second time we actually got to have real conversations. But that was short lived when they had to intubate him again due to an extremely high CO2 level. He spent about 5 weeks in the nuero icu at HFH. 99% of which he was intubated or had a trach that was attached to a vent. I finally got to see him for a few hours after surgery. He couldn't talk but we managed just fine. The surgery was to remove all the lymph nodes in the right groin, insert a trach and suprapubic catheter. He left HFH with a trach, on a vent heading to a Long term acute care hospital (LTACH).
I will continue Jims's story in the next few journal entries.
I also wanted to take a moment to thank everyone who has donated time, money, food, gifts, and who sent prayers and positive thoughts. They have helped us more than I can express. We spent Christmas 2020 without Jim and he spent his alone sedated in an ICU. I am not sure we could have managed without your support.
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