Dear Friends and Family,
I hope this note finds you well and that (if you celebrated it) you had a meaningful Passover. Things in Boston have been less celebratory since last I wrote, but we are optimistic that, as of yesterday afternoon, we have finally turned a corner and are heading in the right direction.
Where we left off was Abba, just before the start of Passover, had checked in to a deluxe room in the ICU to get some help overcoming his graft v. host (GVH) flair-up. He got better and then worse. Much worse. It was really frightening. Miraculously, a completely new treatment path started a couple of days ago has been working and for the first time in days he is fully alert, talkative, and even showing signs of his sense of humor returning. Here’s the basic course of events:
In an effort to determine precisely where the GVH was so they could attack it more directly the doctors had Abba do an endoscopy with contrast. For those unaware, contrast is a special dye that allows us to see the innards with far better resolution. Unfortunately the dye had iodine in it and Abba’s kidneys didn’t take too kindly to that introduction. His kidneys shut down and as a result, toxins and fluids were building up in his body.
He was put on dialysis which worked a little at first, taking off fluid, flushing out toxins, but then his blood pressure started to tank and he became less and less capable of communicating. He also had not had nutrition for days which likely contributed to his uber fuzziness. To further complicate things his skin was super dry and super sensitive and so combining that with the fluid, and the blood thinners, he was having trouble with his skin breaking open and then not clotting completely. With all the swelling there was also a moment of panic and a discussion of needing to cut off his wedding ring to save his finger but fortunately the team was able to reduce swelling sufficiently to safely remove the ring with no harm. And as time ticked on he was less and less capable of staying awake and when he was awake only able to communicate with slight head nods.
While all of this sounds awful there are some very good things in the mix. First, the GVH was in his gut. Why is that good? Because it could have been so much worse. Imagine what sort of conversation we would be having if the GVH was in his lungs, heart, liver, or brain. So gut, ser gut. Second, he’s been in bed now for weeks and has no respiratory infection. This is a guy who used to get pneumonia just by thinking about getting pneumonia so not having something like that now is fantastic!
His treatment has been nothing short of remarkable. While his doctors have been good his nurses have been miraculous. There is a new law in Massachusetts that requires a nurse for every ICU patient which means he has a single nurse who does nothing but take care of him at all times. Both attention to detail and continuity of care have, as a result, been spectacular. They are truly the reason he is doing as well as he is. For example, they used a combination of regularly moving him (roughly every couple of hours), rubbing his back during those turns, keeping the bed at just the right angle to control coughing. They even worked with him so in his weakest state if he could clear his through with a gentle cough they would quickly grab the upcoming sputum using suction (which was not easy since his mouth and lips were incredibly soar and his gag reflex is as strong as it has always been).
They also have some very cool tools at their disposal including a bed that is capable of sending concussive waves through his chest to help keep unwanted things from sticking around in undesirable places. Picture driving his hospital bed over a washboard. They have been keeping his temperature constant (dialysis and generally being ill can mess with your core temp) using a constantly adjusted full body heating pad. It looks a bit like a camping air mattress with long inflated chambers and it is connected to a device that fills those chambers with hot air.
All in all, however, it has been the ability of his nurses to observe the little and the big and separate wheat from chaff that has been most amazing. During morning rounds the docs all marched through the daily numbers and the current and past meds, but it was the report from the nurse that carried the most weight. In fact it was one of his nurses that noticed that during the brief times he was off of dialysis his numbers all improved (until fluids and toxins got bad again) and it was that that ultimately lead the docs to find his current treatment (which is now working).
As of today Abba remains in the ICU with Eama by his side. What is different this morning, maybe even for the first time since my last update, is he was able to report far more complex thoughts. For example he explained to Eama, when he woke up this morning, that he dreamed of food last night—McDonalds. While usually I would say dreaming of McDonalds is a sign of illness, in this case it is a sign of recovery. He also repeated several times this morning that he is alive. This repeated reminder was a mixture of excitement, a bit of disbelief, and his usual practice of making sure everyone around him knows that he is not one to be counted out; he is a fighter and lover of life.
The latest treatment, which appears to be working, is he has been put on something called IVIG which is an immunotherapy infusion. As a result of the IVIG he has been able to tolerate dialysis (now turned all the way up to a level pulling 200cc of fluid off an hour—hasn’t been strong enough for that up until this point) and he is no longer on any of the blood pressure support drugs (no longer needs them). He is not out of the woods yet—the team reports that he still needs to have 4-5 gallons of fluid taken off of him (at 200cc/hour that is somewhere in the range of 75-95 hours)—but the fact that they are able to take fluid off (which they haven’t been able to do for days) and that he is now alert and communicative is such a good sign!
We are cautiously optimistic that he is now on the path to recovery from this unfortunate twist. This morning I asked what the theme song for this moment might be. You may not know this about him but he is a synesthetic and, when he is not ill, hears some song playing in the background most of the time. I suggested Bridge Over Troubled Water by Simon & Garfunkel, When the Levee Breaks by Led Zepplin, or Black Water by the Doobie Brothers. Without any hesitation he immediately responded, “Blackwater.”
So—where to from here? Assuming he continues to improve the way he has and the way we expect he will, he will eventually be moved out of the ICU back into the transplant unit and then out of the transplant unit into rehab before getting to return to the apartment. This is a slow road, but will hopefully be a boring and uneventful journey. Think of this as a slow ride in the cushiest Cadillac, not a fast trip in a road hugging Italian sport car. As a result of all of this, however, the same communication restrictions continue to apply. I’ve been passing along all of your well-wishes and they have been greatly appreciated, but please do not be offended or read anything into receiving no response. It simply means all energy is focused on Eama and Abba and recovery.
This morning, as we had that back and forth over music, I started thinking about other songs over the years that might also be thematic of this moment. Abba was born in 1951 and so for no reason in particular I created a playlist with a single song from every year, then till now. Some you have probably heard, some maybe not, some pretty cheesy, but here they are, in chronological order for your listening pleasure (and on Spotify):
Love,
Ariel