Please forgive me for not updating the blog for 2 weeks!! Let me try to catch up on what is going on.
Carla has been home for 17 days. After the last post, Carla's recovery seemed to take a bit of a pause. One day she would feel well and then the next day quite fatigued and yucky. At the next doctor visit they reassured us that fatigue was quite normal for weeks following the transplant. However, along with her fatigue has been a constant feeling of nausea. This is not uncommon because of the medications and the healing of the body, but could be signs of other issues. Last week was a challenge for Carla to drink and eat.
On the day Carla was discharged, the home care nurse visited us to show us how to administer IV fluids and medicines into her trifusion port that is still part of her body. One of the medications causes the kidneys to excrete extra magnesium which needs to be replaced (electrolytes). Every day we must infuse 1 liter of fluids with magnesium thru her IV line. I guess spending all those hours at the hospital watching the nurses do their job is paying off (hmmm, second career?). The IV uses a pump which is held in a backpack with the IV fluids, so she can be mobile...no "Shelly" the IV pole at home.
At the beginning of this week (Sunday/Monday), Carla had been getting very fatigued and was still having a constant feeling of nausea. We have oral medications to help counter nausea, but it also makes you tired. Trying to battle one challenge makes the other difficult.
We had an appointment on Tuesday, which I thought was on Wednesday (should have written on the calendar, note to self DON'T ASSUME). So, after they called her to ask her where she was, she called me and let me know of the appointment and met Carla and her mom at the hospital. After drawing blood labs they said "No wonder you are tired, your red count is 22." Basically she was anemic and was needing 2 units of blood. The one hour visit turned into a 6+ hour visit. Carla's mom stayed with her while they got the blood ready and I went back to work. I was able to get back to her after the first unit was done and relieved her mom from "duty". They started the next unit and we waited. We finished up about 5:30, appointment started at 11.
While at the appointment, they changed a medication from oral to IV to be kinder on the liver function. The "med-van" came the next day to delivery more stuff. This IV med was new to us, self infusing ball. Just hook it up to the port and it goes in with no pump or gravity. You can put it in your pocket, walk around, go to the store, or whatever.
Because of Carla's symptoms of fatigue and nausea lasting so long, they had done some additional tests to check for other things on Tuesday. During her Thursday appointment, the told us she had tested positive for CMV (cytomegalovirus) and wanted to start treatment same day. CMV is not uncommon for people with suppressed immune systems and can cause nausea because it can grow in the stomach. Many of us have had it, but can be reactivated while on immune suppression drugs. "Beep-Beep", here comes the "med-van". Treatment for CMV is another IV med called Ganciclovir. When the test comes back negative two times she can stop the treatment, hopefully just a week. AND get rid of that nausea. She does four IV infusions a day at home, but sure beats being in the hospital!
Recap - For Carla, the previous week was not a great week. Since this Tuesday, she has felt better and more energy.
We appreciate all the "well-wishes" and continued support, whether it be through a card, visit, meals, offers, carpools, and your love. Thank you Nell, Emma, Grace, Jordan, Isabel for bringing over a plate of treats and seeing Carla this week. She has missed seeing you girls play. Thank you Vahl/Colleen and Anji/Wade for bringing us meals this past week, you kept us strong and healthy. Pam, Jason, Lisa, your flexibility and willingness to be with Carla and support me and the kids is very much appreciated.
We love you all.
Stayed tuned for update on McCall and Callie's activities.