I am Jill’s Inflamed Pancreas
Finally back at the James. I had my own temperature controlled room with a bathroom and I was allowed to move around and take a shower and most importantly I didn’t have an urge to kick half the nurses in the teeth. It wasn’t entirely their fault. According to Jeff I’m not the ideal patient under the influence. I tend to mess with my tubes and cables. I had an arterial catheter and a central venous catheter in addition to my regular Hickman line. Jeff would scold me not to touch them and I told him I would touch it if I wanted to.
Back at the James I was much more comfortable but still had a ways to go. I was given Lasix to start getting the water weight off. That stuff works fast. Too fast for me. On my second night I started having an irregular heart rate. I was hooked up to monitors and the nurse would come in to check and then the night on-call doctor. By morning my heart rate had increased to 160 and stayed there. Another emergency response team was called and a group of nurses and doctors hung out in my room for a couple hours trying to get it down. They were finally successful with a med and my heart rate stayed down the rest of the time.
The rest of the stay at the James was trying to eat little bits of food here and there, physical therapy, fluid and electrolyte balance, blood transfusions and rest. I was released to go home on Thursday and I’ve been here working on the food and fluid thing since then. Proteins are easier for me to digest than carbs so I’ve been having hard boiled eggs, cottage cheese and small portions of meat. The key is still to eat only a few bites in a sitting and eat about 5 times a day. I was told that the pancreas has to work harder to digest carbs and also my protein levels were very low from not eating anything for over a week. I was also given some supplement drinks in the hospital. They are like fruit juice rather than the horrid chocolate milk ensure shakes. I have one of those with breakfast.
I’m walking independently around the house with the walker that physical therapy sent me home with. I’m still very weak and it is nice to have something for support getting around so I don’t fall even though it is embarrassing and I feel like I’m 86 years old. I have to take it to the hospital with me Monday for a labs appointment and I’m already dreading being the really sick girl with a walker. I should be thankful that I’m not in a hospital bed anymore but it’s such a dehumanizing experience to be so sick and at such a young age.
Also this week we meet with our primary doctor to discuss the next step in treatment which will most likely be transplant. I had a bone marrow biopsy this week that came back clean and I am still in remission but now that there are two chemo meds that I cannot take (Vincristine causes orthostatic hypotension and tachycardia and Pegaspargase caused the pancreatitis) we need some type of long term solution for a cure. Bone marrow transplant is our last option and it is terrifying. The doctor wants to use actual bone marrow from the donor rather than stem cells. Most allogeneic marrow donations are done through stems cells now but the side effect that the doctor fears most for me is graft vs. host disease (GVHD). This is a common effect of transplant and can be mild to severe and acute to chronic. The risk is reduced with actual marrow harvested from the donor. My donor is anonymous but is a perfect match. I hope to have a couple weeks at home with the family before I check back into the hospital but we will find out more on Thursday.
Here is a picture of my friend Gabby holding my hand during my bone marrow biopsy. It was during the most painful moment and she wiped a tear from my cheek. I have more graphic pictures and video from this procedure but I’ll let those be by request only.
And not to get too serious, my dad sent me a song all about the pancreas: