Hemophagocytic Lymphohistiocytosis

In 2018, everything was going great for me. I had moved in with my partner at the end of the previous year, I had a good job, and was just living my best life. Then, out of the blue, disaster struck. In March I started developing some pain in my rib area, but didn’t think anything of it at the time. But then the pain started to get worse so my partner got me a hot water bottle to help soothe it, as we didn’t think it would be anything serious. But I knew it was bad when I couldn't eat my dinner that evening.

I thought maybe a good night's sleep would help, but I was not able to sleep much. I was tossing and turning all night. I tried walking around but the pain was just too much to handle, so the next morning a family member took me to the hospital. I was diagnosed with having inflamed ribs and was given some medication to ease the pain.

Getting diagnosed with HLH

Unfortunately, the medication didn’t help. As time went on, I was in even more pain so I ended up being admitted to the hospital. I was hoping they would be able to figure out why I was in so much pain, but for months, I was stuck in a hospital bed doing scans, having drains put in me, and undergoing all types of procedures so they could hopefully find out the root cause of the pain.

I ended up in the intensive care unit because my breathing ended up getting pretty bad. When I was in the ICU, I was told I had HLH, or Hemophagocytic Lymphohistiocytosis. At the time, I had no clue what HLH was, but I found out that it is an immune deficiency that can make you more prone to infections and can potentially affect your kidneys, your skin, and your liver.

In this case, it made my chronic kidney disease worse and I ended up needing dialysis for a short period of time.

Recovering after HLH

After some time in the ICU, I was ready to go back to a room of my own where I would begin my recovery. I remember trying to stand up and buckling and then began crying thinking I would never walk again. I began rehab and it was so difficult. This was the first time I had ever not been able to walk.

However, I managed to pull through and was finally able to go home. But once again, this was short lived. Most of my family had gone on holiday, so I was staying with my grandad at the time. It felt like something was off. I was continuously vomiting and sweating, so my grandad brought me back in to the hospital. Whatever was driving the HLH had not gone away. Finally, after trying a few more medications, they figured out a combination of medication that seemed to work.