Tuesday, October 2, 2012

Love for Lana

Our friend Lana is an adult with HLH just like me. Please share her story and help if you can as she goes through a bone marrow transplant in the upcoming weeks. If you can't help, please pray. Prayers are strong and she will need them.

My name is Lana Leake (Johnson). I am 43 years old. This past May, 2012, I was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). I was close to dying. I was almost in kidney failure, my liver was elevated, my spleen was enlarged, my heart was out of rythym, I had bilateral pneumonia and my body was full of sepsis. Hemophagocytic lymphohistiocytosis (HLH) is a rare but potentially fatal disease of normal but overactive histiocytes and lymphocytes .Fever, hepatosplenomegaly, pancytopenia, lymphadenopathy, and rash often comprise the initial presentation.. Secondary hemophagocytic lymphohistiocytosis occurs after strong immunologic activation, such as that which can occur with systemic infection, immunodeficiency, or underlying malignancy. HLH is characterized by the overwhelming activation of normal T lymphocytes and macrophages, invariably leading to clinical and hematologic alterations and death in the absence of treatment. The spleen, lymph nodes, bone marrow, liver, skin, and membranes that surround the brain and spinal cord are preferential sites of involvement. Incidence is reported to be 1.2 cases per million persons per year. Familial hemophagocytic lymphohistiocytosis is uniformly fatal if not treated; the median survival time reported in various studies is 2-6 months after diagnosis.

The historical series collected by theInternational Hemophagocytic Lymphohistiocytosis Registry reports a less than 10% probability that the patient survives for 3 years. Even with treatment, only 21-26% can be expected to survive 5 years. Remission is always temporary, as the disease inevitably returns. Bone marrow transplant is the only hope for cure. One study found that 50% of deaths were due to invasive fungal infections, which are probably underdiagnosed. The outcomes of secondary hemophagocytic lymphohistiocytosis vary.

I am to have a bone marrow transplant at WV University Hospital in October or November, as soon as I find a donor. I am still waiting on a match. I have approximately 20 appointments in Morgantown prior to the bone marrow transplant. After the transplant, I am going to have to stay in Morgantown for approximately 4 months. I am asking for donations to help pay for my medical expenses, and lodging in the Rosenbaum House, food and travel expenses. My husband is on disability and I have been off work since May, 2012, and any donation that you can give would be greatly appreciated.

Update: Since this was written, Lana's brother Gene will be her bone marrow donor.
Update: I will be admitted to the WVU Bone Marrow Transplant Unit on Sunday, October 21, 2012, and will have the transplant on November 2, 2012. Please keep me in your prayers.

Update 10/23: I just wanted to let everyone know that my bone marrow transplant has been postponed once again. This is the second time, and I am so bummed out, but I guess that's the way God meant for it to be. My donor was unable to give enough stem cells after 2 days of collecting (10 hours total). I have to go back to the docotor on November 1st and they will let me know what the plan is. Said they may want remobilize my brother and get more cells once he has had time to all them to replenish. Thanks everyone for the thoughts and prayers. Will keep you updated.

Lana Leake at PO Box 241, Cannelton, WV 25036. 

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