First post:
Mar 19, 2021 Latest post:
Sep 30, 2021
Welcome to our mother, Nancy Ihns, Caring Bridge page. If you are taking the time to visit, we know that some time, in some way, she has made an impact in your life and we are grateful for you too.
Last fall we started noticing several changes with our mom. Her sleeping habits have always been altered, but she was increasingly tired, had constant problems with eating and cognitively, just seemed off. After (much) encouragement she set up an appointment with her primary care physician. During that appointment, and ones to follow, we learned that something was off with several levels in her blood and she was referred to a liver specialist. Moving forward, after several more tests, we had a probable diagnosis that was confirmed on January 7 as Stage 4 Cirrhosis of the Liver. We were positive, and she was motivated, to make the most of her diagnosis through lifestyle changes and medical treatments.
Only two short weeks later we brought her to the emergency room with swollen feet, legs and abdomen and some disorientation. We discovered that her sodium level had plummeted to 112. The standard adult range is 135-145. She was admitted into the ICU. Sodium levels such as these need to be brought up slowly and under medical care. While in the hospital for a week, she had her first paracentesis completed (a procedure due to liver failure that removes fluids and toxins from your body that your liver can no longer do). We were referred to the U of I for a liver transplant and learned that she was also having challenges with her oxygen levels. They recommended discharge to a care facility for rehabilitation services. We declined, with concerns of COVID and my mom's mental well being and moved her home under support of Therapy Solutions and a visiting nurse, visiting occupational and physical therapist. Through a care brigade, we were able to stay with her 24 hours a day for the next 3 weeks. Unfortunately, her oxygen levels continued to drop.
On February 23, we made the choice to return to the emergency room. This time, at the U of I, after previously being seen by their liver transplant team and believing that it would be best for her to be where that team was. Over the next almost 3 weeks, she remained under the care of the U of I team where we learned that there were other complications associated with her now, end stage liver disease. She was diagnosed with Hepatoplumonary Sydrome. This syndrome is associated with patients that have liver failure. There is no rhyme or reason to why some patients develop this syndrome and others do not. There is no cure, other than a liver transplant. To simply explain, the path of her blood will bypass/skip her lungs and the blood that should be oxygenated to deliver back to her body and organs does not.
After extensive conversations with the liver transplant team we learned more about the journey of transplant, the obstacles involved and the likelihood of an extended life post transplant. These were all very difficult discussions to have. Given the immense amount of time that would be given at doctors appointments, pre and post transplant, the strenuousness of the transplant surgery itself, and the obligation to commit to be kept alive by all means (including machines that may only be sustaining her), my mom gave consideration to continuing on as a potential transplant candidate.
There are choices and moments in life where you have to decide what fight is the one you want to have. My mom is a fighter. The choice was to fight to chase an organ that may never arrive in time, and a poor quality of life, with limited time extended OR to fight for the quality of life she has left. She choose to fight for us. Her friends, her family. On Saturday, March 13, my mom declined to move forward as a liver transplant candidate and returned to her home under hospice care.
We have spent the last week getting to know the amazing hospice care team and establishing a schedule. We have also hired a care team that will be with her 14 hours a day, 7 days a week. My brother and I will stay overnight with her until such time that she may need 24 hour care.
She would love to visit with family and friends, beginning on Monday, March 29, 2021. Phone, text or in person. We ask that you please utilize the visitation calendar available through this site to plan for your visit if it is going to be in person. We ask you to minimalize her visitors at any given time so that it does not become overwhelming. She is on oxygen support and her need is large when moving, or at times visiting. Please do not visit if your health is compromised. Plan to wear a mask and do your best to social distance. (although I'm sure hugs will happen)
Thank you for your support and love during this time.
