Day +25 (D 163)
People keep asking me how it feels to be out of the hospital. I'm grateful not to be trapped on the 11th floor in the BMT ward anymore, but it's hard to let go of some of the habits that I developed there. I wake up every two to four hours expecting my nurse to come in and change my IV fluids or a CNA to come in to take my vital signs. Then I realize that I'm not in the hospital and try to go back to sleep. I also have to resist the urge to report how often I go to the bathroom. I actually had to keep a record of how often I went and how much there was for the nurses.
We have clinic visits every day. This means that for between four and six hours, I'm hooked up to an IV pump, receiving fluids and medicines. It's like being in the hospital all over again.
Today my appointment was for 7am. I had a blood draw, then I got hooked up to receive some magnesium and electrolytes. It's important that I stay hydrated to keep my kidneys healthy. I'm retaining about four pounds of fluid. I'm hoping that I can have something done about that tomorrow. It's making finding pants that fit hard. In addition to receiving magnesium at the clinic, I also have to take a large supplement, and when I'm at home, I have to get hooked up to a magnesium intermate. The immuno-suppresive drugs that I'm on leach magnesium out of the body. It makes it very difficult for me to maintain regular levels.
My white blood cell count is 3.6. My WBC count dropped yesterday, which scared me a bit. I've been reassured that this was expected. My counts will flip flop for quite some time. Today's numbers were a significant increase. My absolute neutrophil count is above 2, which is great. When it reaches 2.5 and stays there, I can stop getting the neupogen shots. My red blood cell count continues to drop, but at a slow rate. I'm encouraged by this. I know I'll have to get a blood transfusion this week.
All things considered, I feel well. I still get tired very easily and have to have a nap. I usually sneak it in while I'm at clinic. I'm staying positive and know that we're looking at the home stretch. I've been warned that it could be a few years before my immune system is able to cope with the outside world. I'll have to continue to wear a mask around crowds and wash my hands compulsively.
We're waiting for signs of GVHD. I get checked daily by the APN at the clinic. She's looking for a rash. I have to be on the look out for GI problems like uncontrollable vomiting. So far so good.
5 comments:
Hey Ann,
It's great to hear you feeling better. I know it looks ike you've got a ways to go, but you've really turned the corner. I rejoice for you. You remain in our hearts and prayers
Wiley
My pants have problems fitting me too... :(
I'll just blame that on fluid retention.
- Paige
Well, if you want to know about Baton Rouge...it is Rain Rain go away... come again tommorow just like yesterday. The weather is probably just like where you are - hot and humid...better yet, air conditioned. :) Weatherman's wife
Ann and Chris-
I've been following your blog since February and you guys are such inspirations! I check in on the blog a few times a week and I've had y'all in my thoughts and prayers these past few months. Reading about your improvements has me smiling from ear to ear.
Godspeed
It sounds like everything is going well! I had no idea it would take your new immune system that long to be ready for the outside world. It makes sense, since it's essentially a baby immune system. My Dad has lupus so he frequently has to watch his interaction with crowds, but he gets through it and he lives a pretty normal life. And you will too! :)
Post a Comment