Prayers for Jessi
This weekend has been – in a word – exhausting.
Friday was spent at Columbia getting tests (the chest x-ray and ultrasound I mentioned in my previous post). Then we THOUGHT we were clear of drama, and had the entire gorgeous weekend stretched out before us.
But yesterday Ana got very tired again, and at around 5 p.m. or so, she begged to go home and lie down (we were walking around Saugerties). She looked ghastly pale, and was shaking uncontrollably. When we got home I took her temperature and it was 103.5. I immediately called Columbia and the hepatologist on call – Dr. Ovchinsky – told us we’d need to take Ana to the ER. A fever that high could mean sepsis and her last labs were drawn nearly a full week ago.
Dr. Ovchinsky grudgingly agreed to let me take Ana to the Kingston ER for bloodwork and possible I.V. antibiotics (my goal was to avoid driving all the way to Columbia just for lab tests and I.V. fluids). It was a painful reminder of that long ago day when I took Ana there for stomach pain that I thought was appendicitis, but turned out to be a giant tumor on her liver. As we walked towards the hospital entrance, Ana began to cry. She knew they’d draw blood and hook her up to an I.V. But I said, “Ana, you are not the same person who visited this hospital eight months ago. You know what to expect. You are informed. You’ve totally got this.”
She didn’t agree with me as we walked in, but I will say that her behavior and composure at the hospital was amazing. She asked the nurses questions, held perfectly still when they put the I.V. in and insisted on doing all the various flu/viral tests they needed herself (most required she swab her nose and throat with a long q-tip). She made me proud.
Dr. Stapleton (the ER attending) initially wanted to transport her to Columbia and I told him to call Dr. Ovchinsky before he did anything (he’d started ordering labs and I stopped him and reminded him to call Columbia first.) He finally did this and ended up being an instrumental part of the excellent care she received yesterday. Dr. Ovchinsky ordered intravenous antibiotics in case of infection, and Ana was put on I.V. saline (which I really think is the default hospital setting for all ER visits). I’d given her Tylenol right before we left the house and her fever responded to this.
The decision to transfer her hinged on the lab results, which came back at about 10:30 looking great. Dr. Stapleton said she’d be discharged within the hour (joy of joys). I was updating a bunch of you via Facebook, but unable to post all of this to the blog. The nurse said it was kind of a miracle that they were able to get the lab results so quickly – apparently the hospital was in the process of switching over to a new computer system on Saturday night and they were having trouble getting labs for pretty much every other patient. She said, “Ana must have a guardian angel looking after her tonight.”
And I believe she did.
At around the time we were in the hospital, Jessi Hilborn passed away. I didn’t know Jessi very well. She was only 29 and had one young son who she adored. She had her transplant a few weeks after Ana and we’d messaged each other privately a few times on Facebook – exchanging information and asking questions. Even in the short time I knew her, I recognized how remarkable she was. Like Ana, Jessi was surrounded by a large community and support network of friends and family that loved her fiercely. Her transplant was supposed to give her a new start on life (she’d been sick since childhood with liver disease).
Instead she went into acute rejection and died in the ICU. She was friends with Ana on Facebook and had read this blog. She knew Ana, and I feel strongly that she was looking out for Ana yesterday.
My thoughts and deepest sympathies go out to Jessi’s family. Our paths crossed only briefly and I’m mourning the fact that I’ll never get to know her as much as I’m mourning a lovely life cut short by liver disease.
I know your thoughts and prayers also helped us yesterday. We were never alone. I know you’ll be with us for the next ER visit too.
Ana’s temperature was completely normal today, but she’s not completely out of the woods (the woods are long and winding on this journey). I spoke with Dr. Ovchinsky today and she said Ana’s enzymes (AST/ALP) are elevated compared with a couple of weeks ago, and Ana will need more labs to check them again on Tuesday or Wednesday of this week. If they’re still elevated, then Ana will need a liver biopsy.
Liver transplant recipients typically get four to six liver biopsies in the first two years following transplant. It’s going to happen sooner or later. They need to do this to determine whether she’s in rejection, or experiencing an infection. It is an outpatient procedure which takes about four hours total and would be done under general anesthesia (the procedure itself is probably a lot less than four hours since she won’t need to be intubated). Rejection and infection can both be treated. What Jessi had was graft versus host disease (GVHD) – a complication where white blood cells in the donor organ literally attack the host’s body’s cells.
It was a sobering and exhausting weekend. Emily and I woke up this morning sick with a bad cold (I think mine might be a relapse from last week’s flu/fever thing). Ana’s actually feeling great and had no fever today. I spent this gorgeous day dragging my exhausted, sick self around and feeling alternatively sad about Jessi, glad that Ana is doing better and frustrated that I’m still not back on my bike again. I keep trying to get back to some kind of “normal” and I just…keep…failing.
The one bright point of this entire weekend was that Emily competed in her very first karate tournament – and won first place in her division! Her victory was a bit overshadowed by Ana’s ER visit (understatement) so I feel very bad about that too, but I do want to say that she also made me very proud this weekend. I know how lucky we are to have each moment – and there’s always next weekend, I guess.
And, here she is in a karate pose while wearing a pretty dress AND her medal (which she refuses to take off).