How Haylee Got Here
May 2021 – Haylee became ill and started losing weight. She suffered from digestive issues and was unable to maintain a stable weight. Doctors were perplexed as to the cause.
July 2021 - Haylee was admitted to Mass General on several occasions with ongoing severe symptoms. She underwent numerous tests, including a liver ultrasound, endoscopy, colonoscopy, liver biopsy, and gastric emptying study. By the end of the month, she was finally started on medications that were supposed to help improve her symptoms.
August 2021 - A time of medication adjustments and more testing.
September 2021 – Haylee had consultations with many other specialists, including endocrinologists and rheumatologists. This resulted in more testing but yielded no new answers.
October 2021 - Haylee’s health and weight continued to deteriorate, with no answers from the experts.
November 2021 - Haylee’s liver functions significantly worsened. She was scheduled for more testing, including an endoscopic ultrasound and something called a magnetic resonance cholangiopancreatography (MRCP). The MRCP showed increased enlargement in her liver and spleen. She underwent a procedure to drain fluid off her abdominal cavity and a second liver biopsy was done which showed significant worsening and multiple problematic issues. At this point, Haylee has is diagnosed with malnutrition as she has lost 60 pounds over 5 months. She was discharged the day before Thanksgiving, as Haylee wanted desperately to spend time with her family around the Thanksgiving table.
December 2021 – The doctors direct Haylee to stop taking Trikafta, the life-changing drug that controls her Cystic Fibrosis. This resulted in minor improvements in her symptoms, but she is still feeling pretty crummy.
January 2022 - Haylee was re-admitted to Mass General for most of the month, with increased nausea, vomiting, and edema. She was diagnosed with Non-Cerotic Portal Hypertension and she underwent a procedure to place a transjugular intrahepatic portosystemic shunt (TIPS) in her liver. This, unfortunately, resulted in Haylee developing Hepatic Encephalopathy, a complication that resulted in extreme confusion to the point she did recognize her own mother. This condition lasted a few days until the doctors were able to lower the toxins in her blood and brain.
February 2022 – Haylee loses her best friend, her Nana, making her condition feel even worse. February was filled with trying to build her strength up with the hopes of returning to some semblance of normal life. That was not in the cards. She continued to swell with edema in her legs and belly, despite taking medications to control it. Upon the pain becoming unbearable, the doctors determined that the shunt in her liver had developed a clot and become nonfunctional. At this point, Haylee was going in for weekly paracentesis (draining of fluids that the body cannot process). At one procedure, they removed seven liters of fluid (that’s 14 pounds of fluid at one time!).
March 2022 - Despite being scheduled for a revision to her liver shunt, she did not make it to the appointment and had to be taken back to Mass General emergently for the shunt inspection/repair. During the procedure, there were significant complications, including bleeding in the sac around her heart and she was developing multiple blood clots that could possibly obstruct her colon and other organs. She was intubated (put on a breathing machine) and was placed in a medically induced coma to rest her body and allow it to heal. Her family was called to the bedside at 2:00am on March 9th as the doctors were unsure if she would survive. You don’t ever count Haylee out and she somehow made it through the night and she made slow but steady improvement once the procedure was complete. She spent the bulk of March in Mass General, learning to walk again and rebuild her strength. She was eventually discharged with multiple home services and lots of work to do. She improved daily and was impressively taking charge of all her medical needs with the assistance of her family and friends.
April 2022 – Haylee continued to receive home care, visiting nurses and physical therapy to try and regain strength.
May 2022 – Haylee attempted to return to work but found she was unable to due to ongoing encephalopathy symptoms. She met with the Mass General Liver Transplant Team for evaluation, and was subsequently officially listed on the liver transplant list. Also, in May, she had another significant bout of encephalopathy for which she was admitted to the Mass General ICU for a week.
July 2022 - It was recommended by Haylee’s Pulmonary Team, along with the Liver Team, to begin looking for a living donor (as opposed to waiting for a deceased donor). Their concern is that Haylee’s lungs may decline due to her CF before she can receive a deceased donor transplant for her liver.
July through September 2022 - Haylee continues to battle pain, nausea, vomiting and encephalopathy. She is regularly meeting with various doctors to monitor her Cystic Fibrosis, and to monitor her liver disease and encephalopathy. Other teams are monitoring her for control of her nausea and vomiting symptoms and yet another team is monitoring her TIPS to ensure it is working properly. There are days she can function normally, but they are followed by days she is completely fatigued and feeling horrible. It is extremely hard to plan her life while her health is so unpredictable.
Haylee's journey continues....will you be part of it?