confused by illness 18 months post BMT
 

Danielle has been very ill for almost two weeks now. She is 18 months post transplant and we went to her doctor today and her counts are still normal. However, about a month ago she started having a severe ache/pain in her right side. About two weeks ago, just as that pain started to subside she began having a pain in her neck around her lymph node and then not surprisingly became ill. After 3 days of not getting out of bed she developed a low fever and we took her to the ER. A CT Scan showed a "small infection" in her lungs, so she was given antibiotics and sent home. She took the antibiotics for the 5 days which ended 5 days ago. She only got worse and last night threw up and could hardly move. She threw up again this morning so we went to see her hematologist and after seeing her counts were ok, he sent us home with a new antibiotic and said if she didn't feel better in a week that he would do further testing. They did give her some IV fluids since she hasn't eaten much in many days and had thrown up.

I am confused and worried. She has been in bed for the most part of 12 days now. Has complained of sore throat, severe ear ache and head ache, upset stomach, nausea and extreme fatigue. Also, my kids and I are around her all the time, but none of us have any symptoms of whatever illness they are treating her for.

Could this be GVHD? Or is this just what we should expect from now on when she gets a cold or flu?

Chad,

I can see how doctors at the ER might not know how best to help Danielle because they wouldn't be aware of her whole history, but if her hematologist has looked her over and thinks the antibiotic might be all that's needed then I think that's a good assumption, and certainly an explanation to hope is correct.

At 18 months out and after good checkups I would have hoped Danielle was back to her full strength, but if a "small infection" can knock her out like this then she's still sensitive in some ways. It may be a lingering result of the transplant, as you suspect, but it's hard to know. I've noticed that my wife was more sensitive to minor bugs than the rest of the family for years after her transplant, which got gradually better over time. To protect her we always make sure everyone in the family gets a flu shot when they are first available.

We post-transplant patients and caregivers tend to be more vigilant than the average person, which is good, but it can also tempt you to be suspicious of every symptom. If this is just a "routine" infection that hit her hard then let's hope she is soon past it.

I'm sure you're making sure that Danielle stays hydrated, so keep up that habit, and make sure to mention all of her current symptoms at the next appointment.