The frigid weather in the Northeast is upon us and it has been brutal. I have cold agglutinin disease (CAD) which makes fall and winter difficult to handle. The hardest part of having this rare autoimmune hemolytic anemia is staying warm.
The past couple of years have been difficult for all of us with a worldwide pandemic, but for me and people like me, there is another layer. The layer that adds a bit of paranoia and self-preservation kicks in. We are beyond that now except for the hard-core colds and viruses that are popping up.
I already caught one of them and the symptoms were long-lasting and bizarre. I thought it was my CAD that made it horrible, but it took my kids just as long to get rid of it. Hopefully, that is it for the season. In the meantime, now that I can settle down a bit and live with less concern my focus is on staying warm.
Read about experimental therapies for CAD
This is the biggest battle most CADs face, the never-ending fight to stay warm. For the past few weeks, I have been enjoying an uninterrupted night’s rest. I have not awakened at not in a pool of sweat or had the need to use the bathroom, everything was great. Hemolysis, from what I could tell, was very lite.
This was confirmed by my latest lab visit, my hemoglobin (HGB) was 10.9. That’s the highest it has been since my diagnosis over 2 years ago. It is not like it was not very cold out, so I am not sure how that happened. This has happened before when I had gotten sick and when I expected my HGB to drop it went up. It makes me feel like if I catch anything my body stops focusing on attacking me and instead whatever the actual invader is.
The reason I even went to the lab in between visits was because of the virus I had. It had similarities with low HGB, weakness, fatigue, and this concerning unsteadiness on my feet. I felt wrong. I was absolutely blown away by my blood results.
I, of course, want to keep it this high but with the cold weather, I know it will be a challenge.
I have had the heat cranked up a lot sooner this season. As you can imagine, the cost is astronomical. My energy bill is higher than it has ever been. I have seen many conversations lately on CAD forums where people had discussed how they did not know how they were going to keep their homes as warm as they need with the excessive cost of everything. One person overseas was told to expect extremely high heating bills this season. She expressed how she did not know how she and her husband would be able to swing such an expense.
That is a scary thought. Heat is what we need most to avoid the exasperation of CAD. I did look to see if there are any programs that help people with rare diseases afford what they so desperately need. In the US we have H.E.A.P. the home energy assistance program, but you need to qualify. I do not. There are also many other programs, but they are all specifically related to medical expenses. However, just because I could not find something viable to help others does not mean they do not exist.
I am fortunate that I can take care of what I need to but there are so many that cannot. With so many people who have CAD and are older, it must make it that much harder being on fixed incomes, etc.
My point is that since heat is needed to keep CAD patients safe and healthy there needs to be help beyond the normal ones I pointed out. This should be a discussion between the doctor and the patient. I realize that our doctors are on the medical side of life, but it would take the stress out of the unknowns if you had suggestions or a list as to where people can go when they need financial assistance in relation to their disease beyond treatment.