Sigh of Relief
It was a long day, but I’m happy to say that Ana was not admitted and we are all home. Here’s how it went down.
We dropped Emily off at school and headed straight for the hospital.
We got to Columbia at about 11 and Ana got an ultrasound of her entire abdomen which lasted an excruciating hour. She hates this – it’s just a lot of poking and prodding. It was the most stressful part of the day for all of us. It brought back horrible memories of the PICU for me because she had to get these ultrasounds every day. They were checking for a recurrence of the portal vein clot that sent her back to the OR the day of her transplant. I have no idea what I’m looking at when I see an ultrasound, which makes it even more excruciating. I end up staring at the screen imagining phantom horrors (is that a clot? what’s that big shape? why did the technician stop? is she not telling us something? why is this taking so long?) I kid you not – it’s sixty minutes of unrelenting doubt going through my head while looking at something as meaningful as an ink blot.
I totally see a blood clot in there, don’t you? Anyway, I won’t keep you in suspense any longer. Her ultrasound results were great. Her liver looked good (can’t you tell?) and the blood flow was perfect. So – big sigh of relief. She then got a chest x-ray and that was also good meaning that her lungs were clear and she didn’t have any other issues. I’d read that prednisone can cause joint damage which is a rare side effect…but I was worried.
We then met with Dr. Martinez and a new physician’s assistant, Tara. Dr. Martinez examined Ana and said she looks wonderful. She poked and prodded and Ana did not have any pain near her liver or even on her shoulder. Another sigh of relief. I asked about the shoulder pain/prednisone connection and Dr. Martinez rolled her eyes and said, “That’s right…you Google things.”
Of course I Google things. I’m a search marketer. You have NO IDEA who you’re dealing with.
Apparently the joint pain thing usually happens in the hips and it is a big deal (it requires joint replacement surgery) but Dr. Martinez doesn’t feel that Ana’s particularly at risk. She wasn’t on the higher dose steroids for that long and she’s on a very low dose now. So…okay.
So, the reason we had to drop everything to go to Columbia was because there were multiple issues going on with Ana – the fever, the fatigue, the back pain and the elevated liver enzymes. Dr. Martinez felt that all of this was likely due to a virus – but without seeing Ana, she did not feel comfortable making an assumption. I love this about her. Better safe than sorry. With transplant patients – you can’t be too careful.
Dr. M also explained that Ana was EBV negative (EBV = Epstein Barr Virus) but her donor was EBV positive. EBV is mono. It is very likely that Ana got mono from her donor liver and that is what she’s suffering from. The blood test she got on Monday would’ve confirmed this, but unfortunately this particular test as well as one other was rejected by the lab. Dr. Martinez would’ve preferred that Ana get more blood drawn today, but Ana hates the phlebotomists at Columbia with all the visceral angst of a pre-teen and ONLY wants to get blood drawn by Donna in Dr. Denno’s office…so we’ll get the full litany of blood tests on Monday morning.
We can live with blood tests on Monday. We have the weekend. We have Ana home. Hooray Hooray Hooray! That is the good news.
Here she is waiting for the car outside the hospital. That is a VERY content smile.
The potentially bad news is that if Ana’s liver enzymes are still elevated next week AND if she’s not positive for EBV, she may need to get a liver biopsy. And this is how things are right now. This is life after a liver transplant. Meanwhile, this weekend is another stolen moment and, ultimately, Ana is a healthy (and lucky) little girl. Well, big girl. We stopped at her favorite mall, the Pallisades Center, on the way home and had a little mini shopping spree.
We got lucky today. I know that. But there is someone out there who isn’t as lucky and I’d like to request you direct your thoughts and prayers her way. Her name is Jessi Hillborn. I met her on Facebook in a liver transplant support group. She had her transplant a few weeks after Ana at the Cleveland Clinic. She’s 29 years old and has two little boys. She went home feeling great, but soon went into acute rejection. Her liver is actually rejecting her body. She’s also now got an abdominal infection and is in the ICU. All of this can be treated, but it is rough and scary and I know her family is hurting. So, prayers for Jessi. I am out here thinking about her and worrying and hoping that she will soon be home with her family.