Meningitis in your words

Adam Gensamer's story

  • Location: USA
  • Categories: Bacterial meningitis
  • Age: Adult 25-59
  • Relationship: Wife
  • Outcome: Recovery with after effects
  • After effects: Co-ordination problems
Adam Gensamer

Adam was at MD Anderson in Houston, Texas the summer of 2019 receiving leukemia treatment for a relapse.

He was in the hospital for two weeks prior to the bacterial meningitis diagnosis battling four blood infections, sepsis, and double lung pneumonia.

One morning Adam complained of a severe headache and was holding his head in the dark and he fell unconscious. I was worried but the doctors coming and going didn’t seem as concerned, yelling in his ear and opening his eyes to check his pupils. They did a CT scan a few hours later and didn’t notice anything on that. They then scheduled for an EEG. However, they didn’t make the request stat so the tech never came til 6:30 pm. He went unconscious at 8:00 am. 

In the early afternoon he got a fever of 103.8 and it did not go down. During the EEG, he was so sweaty from the fever that the equipment on his head kept sliding off. As soon as she had it all hooked up, he had a seizure. His body tensed, his head turned to the side, his eyes bugged out, and hands curling up at his sides. The seizure lasted two minutes. And by this point it was 7:00 pm, nurse turnover. The tech had a hard time getting someone to quickly get Adam a dose of Ativan now that the seizure ended. 

After the seizure, he remained unconscious and they didn’t take him for an MRI until almost 10:00 pm. I stayed at the hospital with him that night. The one neurologist came in and said based off the MRI they believed he had meningitis.

The next day Adam was still unconscious. They told us he had bacterial meningitis but they had at least started meds to treat that after the seizure episode.

"He thought it was 1999 and he did not know who the president was"

The following day he finally awoke. He thought it was 1999 and he did not know who the president was. He did at least know me and his mom and sister. He was extremely slow to respond and slept most of the day. This was when they finally did a spinal tap to collect fluid to determine the strain of bacterial meningitis. But unfortunately the culture didn’t grow, probably because that this point he’d been on antibiotics for two days.  Adam also complained upon awaking that he could not feel anything from the waist down.  The good news that day was we found out he was finally in remission again from his leukemia. That was the whole reason he was in Texas instead of home in Pennsylvania.  But instead of being able to come home, Adam would spent two more months down in Texas because of the bacterial meningitis. 

He spent two more weeks on the cancer floor dealing with slurred speech, constant headaches, and no feeling from waist down.  He was in so much pain he couldn’t participate in PT to try to rehab from being bed bound for so long. He still continued to have no control over bowel movements but could move his legs side to side. He could not lift his legs off the bed though and still couldn’t feel most areas on his legs and feet when touched.  He eventually made it to their rehab floor and spent three weeks working on sitting up and staying steady, and learned to transfer, with a board, from the bed to a wheelchair that was ordered for him.

Then he spent one week as outpatient getting ready to fly home. It took his mom and his brother in law, who is a PT assistant, to get him through the airport and on the plane home. 

We were all so happy he was home, he’d spent five months in Texas.  But we had a hard time learning to adjust to his new handicaps.  He needed much assistance transferring and I had to make my first floor his new living quarters.  My dad even built us a ramp in our garage.  He couldn’t transfer to a toilet because of leg and hip pain so I had to give him a suppository each night after dinner while he laid on his side and clean him up when he was done. He did catheter himself and was doing well with that.  We had a hard time getting him to his first cancer clinic appointment at home, he has had low energy and fatigue since the meningitis and I have an SUV.

But the more we did our new routines, the better we got. Adam wound up with a bladder infection from catheterizing not long after being home and wound up in the hospital again.  Because of how weak he seemed, we were able to get him into the local rehab hospital for three more weeks. They said his leg muscles were all active, they just need built up. But even three weeks there and the assisted standing at the parallel bars, he still is unable to stand or walk. He’s back home in a wheelchair, catheterizing himself, unable to feel his feet, unable to transfer well on his own, needing constant supervision to adjust his legs due to pain.

It’s been four months since he got bacterial meningitis and he has progressed, it’s just been hard. He’s finally in remission after a 15 month battle and instead of going back to work and a normal life, he’s stuck at home in a wheelchair battling leg and hip pain, slurring his speech once in a while, issues with short term memory, and constant headaches because two weeks into a hospital stay at a prestigious cancer institute, he somehow got bacterial meningitis.

Joan Gensamer
November 2019

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