iI was diagnosed with gastroparesis in 2022 and started doctoring for it in August 2021. I went down to 89 pounds and first started with an NJ tube and to a permanent feed because my stomach had stopped working. Then on August 17, 2022, I was diagnosed with acute myeloid leukemia (AML). I was told my chances were 30% because I was not in very good condition when diagnosed. I was malnourished, dehydrated, and already had autoimmune diseases prior. After four rounds of chemo that failed, he said my last chance was something called CLAG-M, which consisted of a weeklong dose of three different chemo medicines, one right after the other given intravenously.
Then the stoma in my stomach for my feeding tube became infected. They came up from gastroenterology and pulled it out. The next day I was diagnosed with pneumonia and sent to the ICU. I was not aware, but they had told my husband to bring my family and friends in to say goodbye to me because I was not going to make it through the night. But I made it through the night, and at that time I was finally in remission for the AML. The CLAG-M chemo gave me chemo induced peripheral neuropathy.
However, I was told I had to have a stem cell transplant. They wanted a younger sibling, but I’m the youngest of eight, and the two siblings that I have are not in good health. So, they used an unknown donor. In February 2023, I received a stem cell transplant. Five months later, I started getting symptoms. I was diagnosed with chronic GVHD. I have peripheral nerve damage, not feeling any of my skin. I have dry eye disease, dry mouth, scleroderma of the skin with the connective tissue disorder. It’s in my bones and joints (fascia), which is hardening everywhere. They said it was fibrosis. I also have fibrosis of the liver and a couple spots on my kidney and liver. When I walk ,my feet feel like I’m walking on razor blades. The GVHD causes me to have extremely severe pain all the time, but I tell everyone I’m wonderful. I have shocks similar to a TENS unit constantly all over my body. I have Raynaud’s disease, and the neuropathy or nerve damage has caused my three middle toes on both feet to become claw toes. My big and little toes are hammer toes. My knees are bad, my blood pressure is low, so I get lightheaded very often. I have a chronic cough and trouble swallowing food. I just changed oncologists. The previous one was great when I had AML, but after I was in remission, he lost interest. He never recommended a dietician, and for three years, I’ve been eating citrus and grapefruit, which i recently found out I should not be eating. My IGA count is very bad, and I was told there are no supplements to help. I was doing ECP every Thursday and Friday for over a year. I’ve been on sirolimus and now on Rezurock® and also have special order eye drops which is the seventh type they have had me try. My mouth bothers me constantly, and I have trouble eating. My endocrine and exocrine glands no longer work. I only weigh 100 pounds and have extreme difficulty sleeping. I’m also on antibiotics, antifungals, and antibiotics.
But what doesn’t kill ya makes you stronger.
My faith in our Lord gets me through each day.
I’m blessed with a husband who takes very good care of me and would do anything for me.
So I’m grateful.
Pray they can find a cure for this disease, if not for me, but for all the people and kids who have or will get this terrible disease. Chronic GVHD is actually worse than having cancer. Cancer is treatable, and this GVHD just progressively gets worse.
MAY God be with all those suffering from blood disease.
Faith gives me the strength to go on.
Elizabeth
acute myeloid leukemia (AML)
