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10/13/2016 Latest post:
Debbie’s story begins three years ago, in October 2013, while she and her family were on vacation in North Carolina. Debbie was awoken in the night with an esophageal bleed. She was rushed to the hospital where they were able to stop the bleeding through a banding procedure where rubber bands are placed over the bleed spots. At that time, she was diagnosed with Nonalcoholic Steatohepatitis (NASH) Cirrhosis, a condition caused by Fatty Liver Disease. Most people with NASH feel well and do not know they have a liver condition. However, it can be severe and lead to cirrhosis in which the liver is permanently damaged and cannot work properly. That is what had happened to Debbie. She was referred to a liver specialist at Jefferson who has been following her case since 2013.
Since her original diagnosis, Debbie’s disease progressed and other symptoms of NASH became evident. She began to retain fluid in her abdomen (ascites), requiring her to begin Paracentesis (draining of the excess fluid) in December 2015. She has continued to have this procedure weekly since then. As many of you know, Debbie fell at work in March 2016 fracturing her hip. (Who knew that osteoporosis can be caused by liver disease?) She had surgery to have a rod and screws placed and was in Riddle Hospital/Rehab for five weeks. After leaving Riddle, she came to stay at my house as it is one floor and she was unable to do steps. While here, she became ill with a condition known as Encephalopathy caused by an elevated ammonia level in the blood. An infection unrelated to her NASH caused the ammonia level to rise but her liver was not able to filter the ammonia out as it normally would. She was admitted to Lankenau Hospital and treated. Following that hospital stay, she was able to return to her home.
Her liver doctor then recommended that she begin the evaluation process for the liver transplant list, the only known cure for cirrhosis. She had a week’s worth of testing performed as an outpatient at Jeff. On the final day of the testing, the doctors were concerned about some of her blood levels and admitted her to Jeff in order to stabilize her levels. Her one level remained elevated and it was determined that hemodialysis (kidney dialysis) should be started. While there, they also completed the last few evaluation tests needed. Debbie was released from Jeff after 4 weeks just in time to attend her niece’s (Brenda’s) wedding.
One of the final tests they performed was a blood marrow test. This test revealed abnormal blood cells is her marrow which were determined to be a lymphoma. That was a shock. While the lymphoma is “mild” and does not require treatment at this time, the concern was what would happen if she were to receive a transplant. At that point, the evaluation team at Jeff determined that she was not a candidate for transplant at their facility and suggested she seek a second opinion.
So, the next week, we went to The Hospital of the University of Pennsylvania to begin their evaluation process. When we arrived there, Debbie was not feeling well but wanted to try to make it through the day long evaluation. However, it quickly became apparent that she was not going to be able to and she opted to go to Penn’s ER. She was admitted to Penn to stabilize her blood pressure. While there, she was informed that she would now require not only a liver transplant but a kidney transplant as well. They proceeded to begin the required testing while she was an inpatient. Unfortunately, the blood marrow test they performed revealed the same lymphoma. Penn’s team was also concerned that the lymphoma, while not requiring treatment right now, would grow out of control following transplant due to the need for life-time immunosuppressant drugs. Penn came to the same conclusion – Debbie is not a candidate for transplant.
On Friday, we returned to Jeff to talk with her doctor about the next steps. Unfortunately, he informed us that there isn’t anything else they can do for Debbie. There is no other cure for cirrhosis other than transplant and her health will not improve. She will continue on hemodialysis (3x/week) and continue to get drained (1x/week). Debbie would like to start peritoneal dialysis which can be performed at home and would allow for more independence. Her liver doctor is talking to the dialysis center and the doctors that do her paracentesis to see if this is possible. Her liver doctor did not give her an “expiration date” (his words) but he has suggested that she have palliative care, allowing nurses to visit at home and other help as needed.
Debbie remains in good spirits. In typical Debbie fashion, when we left Jeff on Friday even after hearing what the doctor had to say, we had to find a donut shop in Philly that she had been told about back in July. We couldn’t leave the city without them! As many of you know, Samantha recently became engaged. She and Mike were to be married next October. In light of Debbie’s health, they have decided to move the wedding up to January 2017. Debbie is busy making wedding plans and has begun to crochet like crazy once again. Debbie is a fighter and she is prepared to continue this fight. (She’s also pretty stubborn I have learned over the past few months!!)
My heart breaks for Debbie, Dave and Samantha and for my parents as well, who have already had to say good bye to one daughter way too early. This isn’t how things are supposed to work. I ask all of you who believe in the power of prayer to lift all of them up. Add them to any prayer lists you are aware of. We are praying for a miracle for Debbie and for peace and God’s comfort for all of them throughout this process.
I will keep you as informed as I can as Debbie continues on this journey. I hope to be able to post ways that you can help them (ie, deliver a meal, drive to a treatment, visit, etc.) once we have that all organized. But for now, storm heaven for her please! Feel free to leave notes and well wishes here for Debbie. She would love to hear from you!