Last month my husband Kent (who has Myotonic Dystrophy [DM] and Multiple Myeloma) ended up in the ICU with a diagnosis of Sepsis.

Just that morning Kent went in for a bronchoscopy. The pulmonologist inserted a tube in his lungs, sprayed some saline and then suctioned it back out. Kent has been having trouble keeping his oxygen levels up without supplemental oxygen since he started a new chemotherapy in the beginning of August. The oncologist didn’t think that the new chemotherapy was causing the low oxygen problems but that he possibly had an infection or fungus due to his compromised immune system. The bronchoscopy was to determine if he had anything foreign growing in his lungs. In order to have any procedure involving anesthesia those with DM have many restrictions that need to be followed in order to be safe due to potential complications from anesthesia. You can find those guidelines at myotonic.org

After the bronchoscopy Kent recovered from the anesthesia and was released to go home around noon. At approximately 6 p.m. I found Kent on the toilet asleep. I couldn’t rouse him except if I said his name. When I said his name he would open his eyes, look at me and then go back to sleep. I tried to get him to walk to the couch in our bedroom but after a step or two I realized that he couldn’t stand and was going to collapse. I knew that I couldn’t support him so I got him back to the toilet and I called 911.

The paramedics arrived and took his vitals. The paramedics asked Kent if he wanted to go to the hospital and he responded with “No”. The paramedics asked me what to do. I told them to “watch me”. I went over to Kent and said, “If I want you to go to the hospital, you’ll go, right?” Kent of course said “Yes”.

The paramedics got Kent out of the house and took him to Intermountain Medical Center (IMC). I had asked them to take him to the University of Utah/Huntsman since that is where all of his doctors are. They said that they couldn’t but that if he needed to be transferred that would happen after he was assessed at IMC. By the time that I arrived at IMC Kent was already being given antibiotics. I was told that they were in touch with his oncology team at Huntsman and that his oncologists were directing Kent’s treatment and that they were in the process of getting Kent transferred up to Huntsman. In order to transfer Kent he needed to test negative for Covid. After a 7 hour wait and a negative Covid test at IMC Kent was moved up to Huntsman and put in ICU.

Throughout the night Kent was given 3 different antibiotics. I had been instructed to bring Kent’s Trilogy (his breathing machine that he uses at night). The ICU put Kent on his Trilogy but they had to turn his oxygen up to 6 liters, which is a lot more than he uses at home. After Kent was visited by many doctors, Physical Therapy, Occupational Therapy, a Social Worker, etc. they determined that he was doing too well to stay in ICU so the next day (after another negative Covid test) he was moved to the regular oncology floor. Kent continued to improve and on the 30th after a 2 day hospital stay he was released to come home with 4 more days of oral antibiotics.

Kent received wonderful care from all involved. At Kent’s next oncology appointment on Oct. 5 we found out that the diagnosis for Kent’s ordeal was very scary. He was diagnosed with Sepsis, Distributive Shock, Encephalopathy and Acute Chronic Hypoxemia Respiratory Failure. Wow! No wonder he was so sick.

Kent has an incredible Palliative Care team that communicated with his oncologist through all of this ordeal. With the Palliative team support and Kent’s oncologist it was determined that Kent’s chemo might be part of the cause for Kent’s Sepsis, etc. due to too much stress on his body. They are going to give Kent a couple of months off of chemo and then reassess at the end of November.

My take away from all of this is that this new oncologist, his previous one moved earlier this year, hasn’t understood Kent’s body like the previous oncologist did. With Myotonic Dystrophy (DM) there is often a slower ability for the body to process some medications such as anesthesia and narcotics. It’s my theory that most medicines stay in the DM body longer than in an individual without DM. I think that all medication should be given slower and in less quantity to those with DM than to a non-DM individual. With my many experiences caring for my DM family they have all experienced hyper-sensitivity to medication.

I hope that when Kent and I share this observation of ours with his oncologist that he will respond well and consider giving slower and/or less chemo to Kent at one time due to this new awareness of Kent’s unique body. The way that Myotonic Dystrophy affects so many systems in the body complicates the treatment for DM individuals.