Day +5//Neutropenia!

This morning when the doctor came in to take my blood sample she called me the star of the group for my high levels at my last check. Well, the star has fallen. Today at my consultation with Dr. Elias, he let me know that I am now in severe neutropenia. He thought that my levels would drop somewhat by now but was surprised how quickly they went down. This is all expected and a good sign that my body is reacting to the treatment. For the next week, I am going to be SUPER careful about what I eat and expose myself to. Any fevers or extreme lethargy will have to be immediately reported to the doctors so they can take quick action.

During my consultation I asked for a definite answer on something that will impact me greatly when I return home: how long do I need to avoid unvaccinated and/or sick people? I will have to avoid any people who are sick or who have been exposed to illnesses.  Also, many of my in-laws are not vaccinated, and who knows which kids aren’t vaccinated at my daughter’s school? This puts me at a HUGE risk, so I will be taking a 9-12 month break from exposing myself to unvaccinated people, just to be safe. My first 6 months at home will be the most crucial part of recovery, but I won’t be in the “safe zone” for 12 months. I will still be able to visit with most people and go out in public places (although avoiding peak busy hours will be crucial in the beginning) because I’ll be protected through “herd immunity.” Both the doctor and I agreed that knowingly exposing myself to unvaccinated groups of people would be putting me at unnecessary risk.
It is going to be a rough year of recovery, but it is going to be so incredibly worth it! I’ve been given a second chance on a life free of MS, and I refuse to let my guard down!!

Aside from avoiding illnesses, the next easiest thing I can do to stay healthy upon my return is to ONLY eat meals for a period of 6 months that I, or someone I fully trust, has cooked/prepared. I’m basically on the same diet that pregnant women are on. All meats have to be prepared well-done, no soft cheeses, all produce has to be washed with soap, etc. Food poisoning is a sneaky sickness known to kill post-HSCT patients.

So how can you help me when I get home?

1. Please understand that I will not be able to hang out for long periods of time. Short visits are welcomed as long as you are healthy. Even if you are healthy, I will ask that you wear a face mask that I will have waiting for you. (Buzzkill: Medical face mask, not a fun halloween one.)
   • No Sniffles
   • No fevers
   • No sore throats
   • No coughs
2. I might need help cleaning the house. It is recommended that I don’t do any dusting or vacuuming for the first few months. Dust is germy and I should avoid breathing it in. So if you like cleaning and you’re healthy, feel free to come vacuum and dust!
3. Food. I hate cooking; I really do. If you’re feeling up to making a meal, please check with me first. I will be on strict guidelines of what I can and cannot eat and it will have to be prepared in a certain way to ensure the safety of the food. It might be a better idea to bring food to my house and we can prepare it together.
   • Avoid all fresh fruits and vegetables – canned, frozen and thoroughly cooked are best
   • Avoid raw or under-cooked meat, fish and eggs – these items should be well done and not have runny yolks
   • Avoid salad bars, fruits bars, and even deli counters – it’s best to buy vacuumed sealed deli meats instead of getting them fresh
   • Avoid raw nuts
   • Only consume pasteurized dairy products
   • Avoid yogurt and items with live and active cultures
   • Always take safety measures when handling food like washing your hands, not using the same utensil on different items and ensuring surface areas are well disinfected
   • Tap water is safe but if you opt for a bottle water ensure the following is listed on the label: reverse osmosis, distillation, or filtered through and absolute1 micron or smaller filter
4. Make sure you are up to date on your own vaccines. Now is a great time to get your flu shot *hint hint*
5. Wash your hands and sanitize often. This is by far the easiest way to prevent the transmission of any germs or illness. I have plenty of moisturizing hand sanitizer waiting for you when you visit me.
6. No flowers!!! I’m not supposed to have plants and flowers in the house for 6 months. If you want to bring flowers, feel free to plant them in my flower beds outside. I have to avoid any contact with soil, dirt, and mulch, so while you’re out there, feel free to pull some weeds 😉

What may be expected of me once I get home?

There’s this silly thing called the “HSCT rollercoaster effect.” Silly, but real! Most patients feel awesome once they get home. It is going to be hard for me to remember most days that I put my body through the wringer, and that I need to take things slow. Some days are going to be awesome, and I’m going to feel normal or even better than normal. Other days I’m going to be exhausted, likely experiencing old MS symptoms, and just feeling down in the dumps. This is all very expected and normal.
Be patient with me as I learn to be patient with myself.

Time to rest up and let my body work through this neutropenic stage! If all goes as planned I’ll be flying home in 8 days!!