Debbie Sims

First post: Sep 8, 2019 Latest post: Nov 27, 2019
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As most of you know, mom has had a rough journey over the last 2-3 months. Back at the end of May this year (right after Mother's day 2019) she developed cellulitis in her right leg that lead to a severe, open wound. This resulted in an ICU admission at Hillcrest Hospital. While in the hospital, she was diagnosed with cirrhosis of the liver. Mom has never drank alcohol so this diagnosis came as a shock. They specifically called it cirrhosis by NASH which basically means the cirrhosis was a result of other things such as medications, genetics, diet, etc.  Mom was discharged home with wound care by the end of that week. Over the next 3-4 weeks, mom received wound care both in-home and at the wound care clinic in Laurens. Mom was still able to ambulate and get around the house, but had decreased mobility obviously due to the open wound and having a wound vacuum on her leg, but she was slowly starting to improve.

On the night of Monday, July 8th, mom began getting confused and talking out of her head. She became more increasingly confused overnight and by 1:30am she was no longer able to answer questions appropriately and did not even know what year it was. She was transported very early that morning on July 9th to Greenville Memorial Hospital. Within a few hours, she had deteriorated and was non-responsive and also developed a significant GI bleed. They gave her 2 units of blood in the ER and intubated her to protect her airway. Mom was placed on the ventilator and transferred to ICU. She was diagnosed with hepatic encephalopathy which is basically when ammonia and other toxins build up in the brain. This was due to her cirrhosis as she had now progressed into acute liver failure. Her liver was no longer able to filter out these toxins so they built up in her bloodstream and travelled to her brain. This resulted in the unresponsive state and was also responsible for her confusion earlier that night. They inserted a nasogastric tube into her stomach so that they could administer Lactulose. Lactulose binds with the ammonia and excretes it through bowel movements. It took several days of Lactulose, but they were able to get her ammonia levels back to normal. The GI bleed actually stopped on its own without any need for intervention. They did an EGD and a colonoscopy and confirmed that the bleeding had stopped. Thankfully, she had no recurrent episodes of the bleeding. She remained on the ventilator for most of that week until Saturday. She finally regained consciousness and she was able to be extubated and taken off the ventilator. Mom slowly improved each day, but ended up remaining in the hospital for several weeks.

Mom was eventually discharged to Patewood Rehab, but she got behind on her Lactulose dose. This was primarily at the fault of the facility as they did not have her medications that night and her dose was delayed. This resulted in confusion again and the next day she was transported back to GMH (at my request) for increasing ammonia levels along with pulmonary edema (fluid on the lungs). She was again admitted and remained at GMH for two more weeks. She was again successfully treated and discharged later to Southpointe Rehab. Mom remained at Southpointe Rehab for exactly 1 week, but developed a severe rash over 80% of her body. They believed the rash was a result of some of her new medicine combinations. One physician believed it was Stephen-Johnsons syndrome and treated her as such. They admitted her again for the rash along with acute kidney problems. Due to the severe rash and mom having third-spacing (the fluid was leaving the cells and vessels and accumulating in between tissue), she developed a UTI and became severely dehydrated intravascularly. This unfortunately lead to acute kidney failure. Mom's doctor at the hospital temporarily stopped her Lactulose due to her having severe diarrhea and already being volume-depleted intravascularly. He was trying to rehydrate the kidneys to get them to heal. This unfortunately lead to her again losing consciousness as her ammonia levels increased. She was again moved to ICU and treated for hepatic encephalopathy along with acute renal failure. Mom was started on dialysis at this point and received dialysis multiple times in ICU. Mom's nephrologist (kidney doctor) reported that due to the reason behind her kidney failure, he still believes that her kidneys will "wake up" in time. Mom began receiving dialysis as needed based on her creatinine, BUN, and other levels. Mom improved and was moved to a floor bed.

At this point, her skin reaction was treated successfully and was completely gone. Her liver enzymes were stable and she was taking the Lactulose 3 times per day and also started on Rifaximin which is an antibiotic that reduces the production of ammonia in the GI tract. The dialysis also did wonders and began to get a lot of fluid off her. For the first time in almost 3 months, mom was having more energy and felt better than she had in a long time. Her spirits were high and she was doing really well. At this point, mom had lost 106 pounds in exactly 2 months. The doctors informed us that she needs a liver transplant and stated that she was now a good candidate as soon as the wound on her leg finished healing. Mom remains on the wound vac, but her wound is healing nicely. The wound isn't nearly as deep and is growing new tissue. Doctors advise that they will begin looking at screening her for a transplant list once the wound is finished healing as it obviously needs to be completely healed before the transplant as she will be on intense immunosuppressants when that time comes. Mom's platelets and hemoglobin are sometimes low due to her liver's inability to produce enough platelets. Until this time, mom has been receiving dialysis through a catheter in her neck, but that access is only good for a couple of weeks. Therefore, on Tuesday, September 3rd, mom had a permanent catheter placed in her chest at GMH to allow for dialysis for a longer period of time. On Friday, September 6th, mom received one unit of blood and was discharged to NHC-Laurens for physical therapy and rehab. She was still doing well and in good spirits, but was a little apprehensive about going to Laurens due to being further away from home. NHC-Laurens was chosen due to their higher quality patient satisfaction scores and better rehab. We had issues at both Patewood Rehab and Southpointe Rehab so we went with NHC-Laurens this time. Mom was still in good spirits and doing well Friday night and Saturday. She received dialysis on Saturday so she was tired, but still doing well. Her kidney doctors report that her kidneys are functioning at 22% and believe they are slowly "waking up" as she is beginning to produce more urine again. They stated that she would remain on dialysis for awhile, but are still hopeful that dialysis would only be temporary.