Common Questions

 I get asked the same questions a lot so I thought I would do a post with the answers. Also I am sharing a picture of what I use to do my feeds. I fill one bottle with just water and use it to flush my feeding tube at the end. The other bottle, I fill with Nutren 1.5 (food) and meds. I also add water to the food so it goes down faster. I attach the tube to the port in my stomach and pour the bottles down the syringe. I hold the syringe an arms length above my stomach so gravity moves the liquid from the bottle through the syringe into my stomach.

1. Do you get hungry? 

Yes, I also get thirsty. If I am late doing a feed, I get shaky and lightheaded.

2. Do you feel the food hit your stomach?

Yes, but I really just feel temperature.

3. What is leukemia?

Leukemia is a cancer of the blood.  Found in bone marrow.

4. What is a bone marrow transplant?

The best way to explain a bone marrow transplant is to think of an oil change. You drain out the old oil and replace it with new oil. That’s why it’s important for people to donate marrow. Donating marrow is not painful as it’s done surgically and the donor is under anesthesia. For information on how to be a donor, check out bethematch.org. 

5. Why can’t you swallow?

Doctors can’t explain why I can’t swallow. I believe it is because when I was in a coma, a trach was put in my throat to help me breathe. My esophagus is now filled with scar tissue that blocks my esophagus. I’ve done several procedures to stretch my esophagus but the scar tissue comes back together. My esophagus would be open for a day but then close back up. Eventually, doctors decided it was not safe to continue the stretching procedure.

6.  If you can’t swallow, how do you sleep?

I need to sleep with my upper body elevated to prevent choking. I also sleep with a bath towel to spit into. I used to carry around a suction machine that would suck out the saliva from my mouth. The machine was super heavy and loud so I don’t use it anymore. Instead, I always carry towels or thick napkins.

Those are my frequently asked questions, I hope the answers are informative.

Unfortunately, I can’t post a picture as my computer won’t connect online. I wrote this post on my phone and it won’t let me add a picture.