This is part 2 of Leah’s story, click here to read part 1
Leah listened as the doctor explained that her body couldn’t continue to be overexposed in addition to its compounding medical conditions. She was told, in no uncertain terms, that it was crucial for her to get into a cleaner environment.
The doctor suggested that Leah take her daughter out of school. Little kids are notorious for spreading germs and Leah’s daughter kept catching illnesses from her classmates, and then bringing them home.
Leah struggled with this suggestion. She wants her daughter to have as normal a life as possible.
Her doctor continued, “I don’t know how much we can reverse. We can try different things, but we need you in a clean environment first, so that you’re not exposed every day. So that you’re not in a constant state of response.”
Leah went home contemplating the enormity of the task ahead.
Two days later she was taken to the hospital by ambulance. Her specialist is three hours away and she can’t afford to live closer. Leah had bronchitis, a fever, and a heart rate over 150 BPM. They tried for six hours to bring her fever down; covering her in cold packs.
They hoped that if they could get her fever down that her heart rate would decrease too. The hospital was out of IV Benadryl, the only thing she could safely tolerate. Finally the ER doctor said that Leah would have to take Tylenol to lower her body temperature. Leah had to wait another four hours as medications were prepped and an intubation cart was brought in in case she had a reaction.
Leah was scared she might die. Her body was so weak. She could barely move, was having trouble breathing, and felt exhausted. It was scary to know the doctors weren’t sure what might help her or what might worsen her condition. She took the Tylenol.
“You get to the point where you are backed into a corner and you rely on God alone. The hardest part of mast cell is that it’s not well known by medical staff and it’s very hard to predict what your body will do.” – Leah
Leah made it home.
She is still receiving IV saline three times a week to keep her heart rate down but because of what she’s exposed to every time she goes to the hospital. She is in the process of trying to receive approval for home care.
She would love a port but that would put her at risk of infection and she doesn’t know what antibiotic she would be able to take if she got one. Her husband got trained by a medic on how to give her saline if she’s too weak. Sometimes she can’t make it out of bed and is racked by nausea, diarrhea, and chills, which only worsens her dehydration.
The paramedics in the area know their family well, and are helpful when Leah needs emergency fluids, but her daughter has a growing association with them and fear. Leah does her best to keep the worst of her illnesses from her little girl, but is sure she catches on to more than Leah realizes. The last time the paramedics came Leah asked them to be quiet and received her fluids in another room from her daughter but she soon caught sight of them and ran in crying “are they taking you?!”
“That”, said Leah, “is what hurts the most. I want so much better for her but we are doing the best we can.”
A nurse once asked her “how long are you going to keep doing this” remarking that Leah had no quality of life.
Leah asked her what her alternative was.
The nurse queried if she was going to continue living this way for the next 50 years.
Leah responded, “If I get 50 more years with my daughter I would be so blessed.”
The family has begun to pursue Leah’s clean environment as economically as possibly. Leah’s father is going to build them a house, with safe, clean materials, on his and her mother’s land, on a rushed timeline. Her husband’s parents took out a loan to get the house started but expenses are still a problem. The family has spent so much money and have sold nearly everything they owned. Their hope lies in this house. Their new home will be the chance Leah needs to develop a baseline and then try new treatment options.
Leah can feel the toll that her conditions have taken on her mentally. She felt she was mentally detaching and she wants so badly to present. She decided to have a therapist, whose specialty is chronic illness, come to the house.
The therapist said she would have to treat Leah like someone who was terminally ill. Leah really wanted a coping mechanism. She wanted encouragement that she would come out of this.
“The hardest part is, as a human, you expect a quick fix, or a way to control it or explain it and figure it out. A way to make things better but you can’t think your way out of this. You can’t figure it out. I don’t know what my body is going to do. I sit on the ground and crawl to my daughter to help her get ready for school but I can’t ever go with her to school. You’re at the mercy of your body and your environment. You’re just trying to survive.”- Leah
Leah hasn’t been in public, aside from hospitals and medical facilities, since 2015.
‘It would be a God send if I could walk outside with my daughter.” –Leah
Despite everything, Leah has her family and her faith.
“My daughter is my whole reason for even trying and even facing each new day. She literally is my focal point and I feel like God blessed me with her first, because He already knew what was ahead. No matter how much pain I’m in or how scared I am…I am her mama first. And I thank God for that. I really feel she is my God send.” -Leah
Leah is determined to keep fighting and has never forgotten to count her blessings. She appreciates all her parents have done, including opening up their home to her and her family. She is down to four foods she is able to eat, but feels so lucky that her husband makes all her meals for her. She wakes up in the night with lung attacks that make the entirety of her ribs ache and radiating, crushing chest pain, but she is grateful her husband will hold her hand and read her psalms until she is calmer. She wants to do so much more with her daughter but, appreciates every moment she has with her.
She hopes that one day she can do just a little more.
“It seems hopeless but I know it’s not. God is bigger than this. ” –Leah