This winding road
Ana had a check up with Dr. Martinez today (the last one was three months ago) and it went well. She’s grown over two inches (since transplant) and is now over 5 feet tall (still shorter than me!) Her labs have been stable for the last few months, so Dr. Martinez discontinued two of her meds and reduced one. She’s now on just two different medications — the tacrolimus for anti-rejection and magnesium once a day. She’ll also take Prevacid once a day for another week.
This is the least amount of medication that Ana’s been on since she was discharged from Westchester back in October 2012. Yes, it’s daily medication and yes, she can’t miss it (the tacro, I mean), but it’s extremely manageable.
Now, having said this… There were a couple of things that came up on Ana’s MRI (from last Wednesday) which weren’t there before including two tiny nodules (less than 1 cm each) – one on each lung. Dr. Hochberg (Ana’s oncologist) thinks these nodules are likely benign and due to some sort of inflammatory process (e.g., she was coming down with a cold), but we’re waiting to hear back from Columbia’s radiologists to see what they think. There was a delay in hearing back from them because they didn’t get the MRI disc I’d mailed last Wednesday (I hand delivered it today). Dr. Martinez said they’ll review it in the morning and she’ll call me.
This business about the MRI came up on Friday and I initially had bit of a freak out and emailed my surgeon friend (who was extremely patient and helpful to me throughout Ana’s entire illness.) Well, actually, first I demanded that Columbia send me the written MRI report which had been submitted by the local radiologist who works with the place in Kingston where Ana had the scan. I then read the report 57 times and when I couldn’t decipher the medical jargon, I emailed him. As always, he talked me off the ledge. He said something that really sums up what happens when anything — literally ANYTHING at all comes into question with follow-up scans.
“This is the sort of torture your life now has– where every little test has the potential to throw you into the most horrible tailspin.”
Yes. This. Exactly.
He also said the oncologist’s opinion is the most valuable here and she told me (at least three times) that nothing is particularly worrisome. That’s all I have right now and it has to be enough.
This is the winding road.
I did get some great answers to what we can expect as Ana begins year 2 of “life after transplant.”
The strength (or weakness) of her immune system is directly connected to the amount of anti-rejection medication she’s on. She’s now on the lowest dose since just after transplant and her immune system seems to be pretty good. She’s had a cold for the last few days, but it doesn’t seem like anything more than that – just a cold. If it lingers for more than a couple of weeks or if she gets a fever above 100.4, then that’s when we’d need to get the liver team involved.
As the years go by and Ana gets further away from transplant, the risk of rejection goes down (as long as she continues taking her meds). I asked if the body ever adjusts to the new liver and is less likely to attack it. Apparently they’re studying this very thing and are in the midst of testing the gradual weaning of anti-rejection medication on patients who were transplanted at age six or younger, and have been on anti-rejection meds for longer than six years. They are still enrolling kids into this trial, but their preliminary findings are encouraging. About 40% of people are successfully weaned from the drugs, while the remaining people just go back to the therapy they were taking without any adverse effects (except for one kid who had a rather big rejection episode). So, we are hopeful that one day Ana will be free from these drugs.
A parting word about the importance of Ana taking her meds every single day at the same time…it’s important. It’s really, REALLY important. If she misses a dose (one dose) she’ll probably be okay, but if she gets out of the habit of taking these drugs, or gets sloppy about it, then she’ll go into rejection. As time passes, they will check her labs less frequently. Four months can easily go by in between labs — this is enough time for acute rejection to take hold. Dr. Martinez told us about two young people (ages 19 and 21) who stopped taking their meds consistently and are now in acute liver failure. They’ll most likely die because she says no one will want to do another transplant on them — they blew it.
These were chilling words. We are asking a lot of Ana. Many adults can’t consistently take their medication, yet she has no choice here. None. She can’t blow it.
We ended the day with a quick stop at the Pallisades Mall on the way home, where Ana got a cute dress for her Valentine’s Dance next month. Here’s a glimpse: