So...I was in the hospital

Patients with multiple sclerosis often experience hospitalization over the course of their lives. Last month, I was hospitalized for a second time. I went to the ER with shortness of breath. I went through a myriad of tests in the ER until I had a CT scan of my chest. After my CT, I was immediately whisked off to the ICU. It turned out that I had bilateral pulmonary embolism (PE). A PE is a blockage of an artery in the lungs by a blood clot that has traveled from elsewhere in the body through the bloodstream. In my case the blockage were blood clots that came from my legs. In the ICU, I was given IV drugs to work on dissolving the clots in my lungs. I also had an IVC filter placed to prevent any further blood clots from traveling from my legs to my lungs. Once I was stable, I was transferred to the regular hospital. There I continued to improve. Unfortunately, this incident set off a flare of my MS. I had lost strength in my arms and hands. I knew I couldn’t go home in this condition. I needed rehab.

Once my insurance approved rehab, I was transferred to acute inpatient rehab. There I would work at three hours of therapy (PT and OT) a day. While the therapy was extremely helpful and I grew stronger every day, the experience with some of the rehab staff was surely lacking. The ICU and hospital nursing staff were impressive. Unfortunately, I can’t say the same about the rehab nursing staff. The rehab staff did not seem to be trained to treat patients with chronic illnesses. I cannot walk or move my legs so I needed help in nearly all aspects of my care. I often felt like a burden when I needed help getting dressed or transferring to my wheelchair, commode, or bed. At times, I felt that I didn’t receive the attention, understanding, or empathy I deserved.

I learned a few lessons in my experience. First, you need a good advocate. I learned that I needed to be my own advocate and had to direct details of my own care much of the time. Fortunately, while my husband and I are able to advocate effectively, I can imagine others in that situation that would not be able to. Having a family member or close friend that can be there regularly and help communicate with your care team is necessary. Second, don’t assume that nursing staff know what they are doing all of the time. It’s fine to ask questions or probe staff to get a better understanding of what actions they are taking and why. If the person resists your questions or doesn’t know why, this is a red flag, and should be raised with your doctor. 

Often, recovery is in your own hands.