For AA, PNH patients, or anyone else struggling

[KristinR]

Hello. Last time I was on Marrow Forums, I was in a dark place full of distress. Today, I'd like to bring someone positivity and I'd like to share my story.

I was hospitalized May 21st of 2014 for severe pancytopenia. My blood counts at the time were Hb 5.8, Plt 4 and WBC 2.3 with a PNH clone of 11 percent. I had some symptoms before the diagnosis (mysterious bruising, petechiae, bleeding from my nose and gums, shortness of breath, etc..), but it was never anything that alarmed me. I'd figured I'd bumped into something and didn't remember, the air in my house was too dry, I needed a softer tooth brush, needed to get into better shape...list goes on and on.

I had a routine physical done and received a phone call from the lab that night to rush to the emergency room. When I was hospitalized, I had no idea what I was in for. One of my doctors told me best case scenario, I had Leukemia and worst case scenario was this weird rare disease no one knows about (Aplastic Anemia). He told me I should invest in hats and that it was a good thing I already had a son because the chemo I would need would rob me of ever having children again. That I would need a port implanted in my body but that it was ok, because once it came out, I could always tattoo over the scar. I guess he judged me over the tattoos I'd already had. I went hysterical.

At the time, I was planning a wedding for August. I was 26 years old, I had a two year old son. I'd never had any health problems. I truly thought my life was over. After two weeks, and many transfusions and a biopsy, I was given the Aplastic Anemia diagnosis. I was automatically ecstatic. Because anemia sounds like a better case scenario than cancer right? Boy did I have a lot to learn.

From that point on, I was receiving multiple transfusions, seeing my oncologist once a week, blood work twice a week. I was blessed with sucky veins too. My body became covered with bruises from low platelets and failed blood withdrawal attempts. My doctor was very good but realistic and refused to give me any false hope. My only full sister was tested as a potential donor and unfortunately, she wasn't a match.

I was given my horse ATG early June and tolerated it well. A month later, I hadn't shown any improvement and was still regularly getting transfused. My doctor assumed it didn't work and wanted to try another immediately. From my reading, I'd learned it could take patients anywhere from 3 to sometimes 9 months to show a response. The wedding was on August 22nd and I told her I refused to put my body through anymore trauma until after. Mysteriously, the following counts hadn't gone up, but they had sustained.

From that point on, until now, my body has consistently been reproducing it's blood cells. My last blood transfusion was in July. Today, my Hb is 10.9, Plts 251, and WBC 7.8. My PNH clone is at 3.9 percent. While I'm not at a full remission just yet, I'm doing so much better than my doctors or I would've anticipated.

I thought I wasn't going to make it down the aisle. I thought by now my son wouldn't have his mom and that I wouldn't be here with my husband. My purpose for writing this is for the people who are newly diagnosed. The people who are sitting here afraid for their lives, looking for some shred of positivity that seems impossible to attain. And maybe even some of us who have been struggling quite some time. Know that everyone's scenario is different and don't be afraid to have faith. Doctors are wonderful knowledgeable professionals, and should be taken seriously. However, they are not fortune tellers. They do not determine your future, only God does. Even if you aren't religious, never let anyone steal your joy or positivity. Our body performs much better when we are mentally at peace rather than distressed. I hope I'm not offending nor do I intend to sound preachy but had I allowed the feedback I was getting depress me and keep me down, I don't know if I'd be here today.

Much love to you all, thank you so much for reading!

[Heather8773]

Thank you for sharing your story

[Cheryl C]

A wonderful positive story! Thank you Kristin.