- Autoimmune Hemolytic Anemia / Cold Agglutinin Disease
- Interviews
Paulette's interview
How did all start?
Anemia discovered by chance when I had complained for 5 years about a sudden fatigue (which turned up to be Sjögren.). My hematologist suspected CA after ruling out other diseases. I was watched without symptoms for about a year, although looking back I was getting short of breath when walking up stairs and doing gardening. I attributed this to age!
In the fall of 2018, I felt very tired after gardening , went to bed early without energy to even eat dinner, woke up with a fever, which I thought was the flu. It wasn’t. Blood and urine was tested and showed UTI and was put on antibiotics. Three days later I was hospitalized with hemoglobin level at 4 I was given blood and went home in 3 days. I was started on Rituxan and blood transfusions, but was hospitalized again with another UTI. then I began a series of Rituxan and Bendamustine infusions. My hemoglobin hit 13 and I celebrated, cautiously! I’m well now, but wondering about the future!
Do you already have a diagnosis? How long did it take you to get it?
Yes. 6 months
For what medical specialties have you been treated? What has been the most useful specialty for your?
Hematology/ oncology
What has been the most useful thing for you so far?
Rituxan
What have been your biggest difficulties?
Getting information
How has your social and family environment reacted? Have your social or family relationships changed?
No
What things have you stopped doing?
not being afraid of cold weather
What do you think about the future?
Not much
