Married to someone with sickle cell

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Growing up, I had heard of sickle cell, but I didn't know exactly what was involved in it. Since I had never known anyone with it, it wasn't a concern to me. However, when my husband and I started dating, he told me that he has sickle cell thalassemia(?). For the most part, he's a healthy person. But he has to be careful with weather changes, having too much stress and generally being healthy. Sounds easy enough. But I forgot to mention that he has no spleen or gallbladder- both were surgically removed. So I did some research into his disease and found that he had the rarest type,but also considered to be more mild. People with this get "pain crises". Now some people seem to have more issues with the sickle-shaped cells clotting together in either the muscles or the bones. When they are in the muscles, you can see swelling and knots in the problem areas. Which can, depending on where they are located, cause difficulty walking, sitting, standing, holding things, laying down and pretty much affect quality of life. They had him on a drug that's typically used for chemotherapy purposes to thin his blood. They worked well when he was having a crisis, but not so much if he was feeling fine. They would make him get sick more often, if he got a cut, it would bleed endlessly. Since we've been together, he's been hospitalized 4 times. The first time was unnerving. I didn't know what to do with myself. I just stayed in his room and would watch him sleep. I would fetch him water and harrass the nurses if they were taking too long to get him medication. I do think that I've adjusted to the disease now, but it does throw me a curve ball every now and then. We have a three month old daughter and we have found that she does carry the trait. Is there anyone else dealing with a situation similar to this? Or have a story that they would like to share?