22/12/2021
Good news! I got my blood tested again yesterday, and my Dr called me with the news that my counts are going up. They still arenāt what they should be, but going up is a good (and welcome) sign. Iāll go into some details for the curious minds out there and in particular those that are following me because they are considering this treatment. The condensed version is that Iām still neutropenic, but now a mild case and getting closer to the minimum acceptable number. I donāt want to alarm anyone, but do feel that those considering HSCT realize that it is a serious procedure, there may be complications, and that one needs to have the time to recover. I made sure to poor through all the documentation and testimonials before I made my decision and I still have no regrets. I guess I should add that many of the DMDs for MS also have their own side effects and the possibility of complications.
The detailed info:
I had a CBC (complete blood count) test last Tuesday, followed by a call from my very concerned Dr. As I posted week, my counts were very low, particularly my white blood cells and more specifically the neutrophils. Why this is important.. neutrophils are a type of white blood cell and they are key to fighting infection. If they are low, you are considered to be in Neutropenia and you canāt fight off infections. Obviously I had to go back to being extra careful with food and with hygiene, though we were still following most of those protocols. The biggest danger while in Neutropenia is Sepsis. Sepsis is a potentially life-threatening condition that occurs when the body's response to an infection damages itās own tissues. When the infection-fighting processes turn on the body, they cause organs to function poorly and abnormally.
Sepsis may progress to septic shock. This is a dramatic drop in blood pressure that can lead to severe organ problems and death. This is the reason I needed to monitor for any signs of fever, shortness of breath, or other signs of infection and go to the ER immediately if needed.
I was in Neutropenia in Mexico after my last chemo, which was expected. During that time Phil and I did not leave the apartment and had a cleaning lady come in and thoroughly sanitize the place every day. I wasnāt allowed in the kitchen, I wasnāt to touch the garbage, or even use the same bathroom as Phil. A Dr checked my vitals daily and I had blood tests every 2 days. Here at home, we have a household of 5, plus a dog and a cat. People are going to work, school, the grocery store etc. and unfortunately the cleaning lady didnāt come home with us. But we are doing our best and itās up to me to be extra careful. I carry Lysol wipes with me and am constantly yelling ādid you wash your hands?!ā āfor 20 seconds?!ā Queue the Mom voice š
Needless to say this is stressful and your mind can sometimes be your worst enemy. Especially when Phil wasnāt feeling well for a day and one kid started blowing his nose. But Iāve made it through, have not had to go to the hospital, had my lovely friend Shantelle talk me off the ledge and provide some excellent advice on how to deal with any problems, should I need to, and numbers are going up! Though this doesnāt happen to everyone, it can and itās all a part of recovery that I need to accept and work through.
Numbers are below if interested.
Leukocytes (white blood cells):
Was: 1.4
Now: 2.1
Normal range: 4.0-10.0
Lymphocytes (type of white blood cell):
Was: 0.4
Now: 0.5
Normal range: 1.2-3.4
Neutrophils (type of white blood cell):
Was: 0.7
Now: 1.1
Normal range: 1.5-6.5