Two years ago, I was diagnosed with aplastic anemia. It’s a rare blood disorder that affects your bone marrow. Each year, 600-900 people in the United States are diagnosed with the disease. But, only 20 percent survive past 18-20 months because of the risk of infection or complications from treatment.
In most cases, younger patients respond better to treatment than older patients. When I was diagnosed, I was 39 years old. I was considered too old for a bone marrow transplant. I also have Juvenile Rheumatoid Arthritis. Having both aplastic anemia and juvenile rheumatoid arthritis complicates things further. Since I was low on blood and platelets, I was at an increased risk for bleeding if I fell and hurt myself.
By having low white blood cell counts, I was also at an increased risk for infections. Doctors placed me in isolation, which meant I had to wear a mask and couldn’t go out in public. Anyone who knows me knows I’m a social person. Being in insolation wasn’t the easiest thing for me. I feed off the energy of others I love and care about.
While I was in the hospital getting treatment for my aplastic anemia, I developed a staph infection and pneumonia. The pneumonia quickly turned into a severe, fungal lung infection. Doctors at The Nebraska Medical Center had to remove part of my right lung to save my life. Thankfully, I made it through the surgery. I was so happy to be alive, but knew I still had a long road ahead of me.
Once I was discharged from the hospital, I had to go to rehab to learn how to walk again. During my first week there, I developed Clostridium difficile (C.diff), an infection of the bowels. I couldn’t eat, my stomach was bloated and my bowels were full of blood. I was placed on IV meds to treat the C.diff, but without white blood cells to help fight the infection, it was difficult. My doctors decided to try a fecal transplant to save my life. My sister ended up being the donor. Doctors took the good bacteria from her body, and put it into mine. I was only the second patient to have a fecal transplant done at the med center.
Once the C.diff was treated, it was time for me to go back to rehab to get my body moving again. After a few weeks of therapy, I was excited about the possibility of going home. Since I had spent every holiday in the hospital since Christmas, my goal was to be home by July 4. Unfortunately, I got sick again. I couldn’t eat, and had high fevers. Doctors discovered I had a small bowel obstruction and another fungal lung infection. Further testing showed I had C.diff again. Thankfully, it was caught early this time and I didn’t need another transplant.
Since my bowels needed to heal, I couldn’t eat like I used to. My weight dropped to 95 pounds. I was a skeleton of my former self. It was hard to look in the mirror. I was so thin, had no hair and had to wear my glasses instead of contacts to protect my eyes from an eye infection. I also lost several layers of skin.
By mid-July, I was finally able to go home. But, I still needed a lot of help. Thankfully, my mom and stepdad were kind enough to let me live with them. My stepdad is retired, so he was able to help me with all my IV meds. He would also bring me to the hospital for my appointments, lab work and blood and platelet transfusions. Those were truly some long days, and my stepdad was such a trooper.
Even though I was at home recovering, I still ended up in the hospital at the slightest infection or high fever. My doctors called it “the perfect storm.” Since I didn’t have any white blood cells to fight my lung infection, it wouldn’t completely go away. I even meet with palliative care (similar to hospice) to discuss my options.
But, my doctor, Mojtaba Akhtari, MD an oncologist/hematologist at the med center, reached out to a doctor with the National Institutes of Health. I was placed on an experimental drug called Promacta. It’s a costly medication, used to treat aplastic anemia. Thanks to the persistent and diligent help of Dr. Akhtari, my insurance company agreed to pay for the drug. Promacta was a blessing and helped stabilize my condition. I made it through the holidays without being in the hospital.
By spring, I was doing much better. Dr. Akhtari decided to try a round of rabbit anti-thymocyte globulin (ATG) along with cyclosporine, an oral med that helps treat aplastic anemia. When I first got sick two years ago, I received the horse ATG med with the cyclosporine.
Within a month, something amazing happened. For the first time in 16 months, my white blood cells were increasing. This meant I didn’t have to wear a mask. I was so thrilled. Something was working! It made me so grateful and hopeful to continue on the road to recovery.
By October, the good news kept coming. The CT scan on my lungs showed the fungal infection had cleared up. By having my white blood cells increase, combined with IV meds and great medical care, my lungs had a chance to heal. Compare that to a year ago, when my doctors weren’t sure I would make it through the holidays.
This past Thanksgiving, Christmas and New Year’s was the best ever. I was out of the hospital, infection-free and going longer between blood and platelet transfusions. Words can’t even describe how amazing it feels and how grateful I am to be alive and doing so much better. I truly believe each day is a gift.
In January, Dr. Akhtari decided to do another bone marrow biopsy. The results showed my bone marrow functioning at an average of 30 percent. Dr. Akhtari was extremely pleased. The last bone marrow biopsy I had a year ago, showed my bone marrow functioning between 5-10 percent. When I first got sick two years ago, my bone marrow was functioning at less than 5 percent.
Now that I’m doing better, Dr. Akhtari has mentioned the possibility of doing a bone marrow transplant for long-term results. But for right now, he wants me to focus on living life. No matter what happens down the road, I have complete faith in Dr. Akhtari, the whole team of bone marrow and oncology doctors, nurses, techs and staff at The Nebraska Medical Center. They won’t do anything to compromise how far I’ve come. It truly is an amazing place. I’m forever grateful for the quality of care I received and the love, support and prayers from family and friends near and far. Everything from here on out is icing on the cake.