Barbara’s Story

Site created on April 22, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Barbara is currently recovering from  a bilateral lung transplant. Thank you for visiting.

Newest Update

Journal entry by Barbara Creed

Tonight I looked over the entire journal. I am going to add a note about last year.

Our beloved home finally sold, and we made preparations to move into our new condo. One night, I took out the recycling bins and slipped on the ice on the deck. I dragged myself upstairs to wake Bob; I knew I needed to go to Northwestern to be checked out. The pain was a 10! Because I could not manage to go down the stairs, Bob called 911. The EMTs got me into Bob's car, as Northwestern was not in their zone.

It was still Covid Times in 2022, so Bob had to drop me off and get me into a wheelchair. It was a very long wait, until the x-rays of my leg and CT of my head. I'd fractured my right tibia.

After about a week at Northwestern, I was transferred to the Shirley Ryan Ability Lab, one block away. I was there for a few weeks, and the entire move happened without me.   Unending thanks to all the relatives who helped with the move, since Bob had to go to Loyola's ED.

Bob's liver disease caused ascites to build up in his belly, and it was regularly drained. He had the procedure shortly before the move. All the lifting caused the belly to leak. It got worse and worse, so Bob went to Loyola and our family finished the move!

Bob was very attentive during my hospital and rehab stays, but it clearly exhausted him. The intense rehabilitation at Shirley Ryan got me where I am today! I came home to the condo in a wheelchair.  I'd missed most of February. I had at-home and outside rehab, and the break has healed completely.

2023!

Bob's liver and kidneys are failing. His liver sends ammonia to his brain causing hepatic encephalopathy, and tremendous confusion. He must take Lactulose and Refaxin every day.

Bob stopped drinking in mid-January, but by the end of the month, he was hospitalized. Apparently, he would forget to take the very important medicine and fall into encephalopathy resulting in a hepatic coma. In the first 90 days of the year, he was an in-patient at Loyola for 28 days. Usually at the end of a week, he would become confused; I called 911 on five occasions.  Since his release on April 4, there have been no recurrences.

We have a system to ensure that Bob takes his three doses a day, and it is working. We want him to be around for a long time!

I could not have gotten through this without the special care I receive from Mike at Northwestern and my therapist, Mary Ellen. I have learned so much, and I believe I have truly grown. The listening ears of my immediate family, extended family, and friends, and the concern and prayers of the Ascension community have helped us through.

Will Bob receive a liver and kidney transplant? Time will tell. He must complete and pass an outpatient program before he can be evaluated for a transplant. I feel I am uniquely qualified to be his caregiver in any case.

This journal will now be published, but the journeys continue. I am ten days away from my 3rd lungaversary on May 2, 2023. 

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