May 1, 2025 • 22 mins
We're back! Where did we go and why did we pause in the first place? You'll have to listen to the episode to find out all the details, but let's just say Dan conducted an extended and very personal investigation into the intersections of palliative care and bone marrow transplant. In this episode, Sarah interviews Dan about his experience as a patient and the take-home points he's bringing back to his practice.
(Apologies to Elisha Waldman for the episode title. Read his book; it's excellent.)
If you'd like to sign up to be a bone marrow donor in the US, you can do so at NMDP.org.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Sarah Dabagh (00:00):
Hi. This is Sarah, and this is Dan, and we'd like
to welcome you to PediPal. Anow restarted, now alive
palliative podcast about allthings pediatric palliative
care. We're back, baby. Yeah, weare. Where have you been, Dan?
Oh, let me tell you. Is that howwe're gonna start this?
Daniel Eison (00:15):
I think we're started exactly that way,
probably with that phrase. I'mgonna, I'm gonna use that. Hi.
This is Sarah, and this is Dan,and
Sarah Dabagh (00:26):
we'd like to welcome you back to PediPal.
Daniel Eison (00:29):
In case you've forgotten, a podcast about all
things pediatric palliativecare.
Sarah Dabagh (00:34):
If you are listening to this in the year
2026, or beyond, on yourpodcast, manager, you may not
realize but for the rest of you,you may have noticed that there
has been a several month gapsince our last recording.
Dani (00:45):
We're glad to be back, and we're going to do things a
little bit differently in thisepisode than we've ever done
before. Kind of ease back intohosting a podcast. Usually we
have guests join us, but thistime, it's just the two of us,
and we're going to talk a littlebit about what we've been doing
and thinking about since ourlast episode.
Sarah Dabagh (01:08):
That is a very broad way to introduce the
subject. I will narrow it down alittle bit. Would you like to
share? You like to go ahead andshare? I think none of us know
how to be like So Dan, how wasyour life changing medical
experience?
Daniel Eiso (01:23):
So our last episode came out in September of 2024
and then in October of 2024 Igot an allogeneic stem cell
transplant for myelofibrosis. Ihad my transplant done at
Memorial Sloan Kettering in NewYork City, and today, on the day
we're recording this, I'm dayplus 117 post transplant. I
(01:48):
spent almost four weeks in thehospital and then got
discharged, and at this point,I'm doing pretty well.
Sarah Dabagh (01:54):
I actually wonder if you can share, I can share a
little bit about your backgroundwith bmts and why it seemed
especially poignant that that iswhat you were getting.
Daniel Eison (02:04):
The poignant and ironic thing is that not only do
I practice in pediatricpalliative care, but after my
fellowship and before I was ableto find a job doing pediatric
palliative care, I worked forabout two and a half years as a
hospitalist on a pediatriconcology floor, and I spent
about a third of that time onthe BMT service. So I have taken
(02:27):
care of many kids who wereundergoing bone marrow
transplant while they were inthe hospital. And as you might
guess, that was a double edgedsword for me going into this
process. What was the good edgeof that sword? I mean, there
were definitely some goodthings. I had a lot of knowledge
about what a BMT might looklike, and when my team talked to
(02:49):
me about different things toexpect, like the conditioning
regimen or the side effects, Icould say pretty confidently,
yeah, I know I've heard aboutthese things, and I knew what it
looked like, and that washelpful, I hope, for my team,
but also helpful for me. Itwasn't a big mystery. Going into
it, I could say I've seen this.
(03:10):
I kind of know what I'm goingI'm going in with my eyes open.
I know what to expect, in somerespects,
Sarah Dabagh (03:14):
natural follow up question. The other edge of that
sword, I think,
Daniel Eison (03:18):
both working as a hospitalist and especially
working in palliative care, Iwas pretty attuned to all of the
things that can be unpleasantduring the process of getting a
transplant. I had seen EMTs witha lot of complications and a lot
of things have gone wrong. Soone other thing that was kind of
interesting for me from thehospitalist perspective, maybe
one thing that it didn't prepareme for as a hospitalist, I was
(03:40):
purely on the inpatient side,and so I saw all the acute parts
of the transplant, you know, theweek of conditioning, and then a
few weeks post, and the majorityof this time, and the majority
of this process is an outpatientprocess for me, and I'm grateful
that I didn't have to spendlonger in the hospital. But
nothing that I did as ahospitalist kind of prepared me
for what this would be likebefore going to the hospital or
(04:01):
after leaving the hospital.
Sarah Dabagh (04:02):
So did you tell them that you were a doctor, or
did they figure it out? Or didyou tell them exactly what it is
that you practice?
Daniel Eison (04:08):
Yeah, I really wanted them to be aware of that,
and I wanted them to be awarethat I was a palliative care
doctor, because I know that therelationship between palliative
care and oncology is, to say theleast, and a complicated one,
and I figured it was going to behaving a major influence on how
I perceived my transplant, andso I wanted the team not to be
(04:29):
surprised by that. What's
Sarah Dabagh (04:30):
the relationship with palliative care like there?
Daniel Eison (04:33):
So I did meet the palliative care team, the adult
palliative care team. I metseveral members of their team.
They are awesome. I requestedit. I think I would not have
gotten a palliative care consultif I didn't request it. It is
not standard for every BMT, andI requested it very early on,
like pretty much my firsttransplant clinic visited
because I didn't want to bethinking about palliative care
(04:59):
stuff. I wanted to be. Totally apatient, and so I wanted to kind
of outsource palliative care,thinking to someone else, and
they were receptive to that.
Everyone's attitude about merequesting palliative care was
kind of benignly bemused. Theydidn't totally see why I needed
it, but they were happy tocooperate. So
Sarah Dabagh (05:20):
as you talk about outsourcing palliative work, not
being your own palliative doc,are you thinking about
anticipatory symptom needs asyou have this conversation, or
are you really thinking, I needsomeone to talk through all my
if and when and hopes and wishesand worries?
Daniel Eison (05:36):
I mean, both?
Yeah, that's kind of all I haveto say about that. It was both.
Was both things, okay,
Sarah Dabagh (05:42):
what did they ask you questions that you expected?
Did how they practicedpalliative care there align with
your expectations and your ownpractice?
Daniel Eison (05:51):
Yeah, I would say so there were no real surprises.
What I was actually reallysurprised by, though, was they
weren't the only ones asking mepalliative care questions. There
was this telehealth visit I hada little bit before I was
admitted with a nursepractitioner from the BMT team.
I didn't really know what thevisit was going to be about, but
(06:13):
she introduced herself and said,You know, I'm going to ask you
some questions, and I understandthese might be sensitive
questions, personal questions,and so if you're not
comfortable, like, feel free notto answer anything. And I'm I'm
like, What? What is she gonnatalk about? Like, what is this?
What is this about? And shegoes, you know, just first of
all, like, what can you tell meabout yourself? Is there
(06:33):
anything about you that weshould know to help us provide
better care for you? And I waslike, oh, first thing you should
know, I'm a pediatric palliativecare doctor. I know exactly what
questions you're going to askme. I ask these questions every
day, but go ahead, like, let'stalk. And she then proceeded to
ask me, like the five initialconsult questions, what are your
(06:54):
hopes and what are your fears?
And tell me about your supports.
And I was like, it's great. Andwe had a kind of a meta
conversation about it all. And Iasked her, you know, are you
trained in palliative care? Andshe said, No, I'm just, you
know, a BMT. NP, I've been doingthis for 20 years. And I said,
you're like, you're really goodat it. Like, this is palliative
care. Like, this is what I doall day. And this has been a
great conversation. And so itwas kind of, it was kind of
(07:16):
funny that that's where that wascoming from. You know,
palliative care wasn'tspecifically integrated into
BMT. They weren't doingautomatic consults, but I did a
palliative care initial consultwith the BMT team. Essentially
Sarah Dabagh (07:29):
did your answers to any of those questions
surprise you.
Daniel Eison (07:33):
I don't think they surprised me, because I've been
thinking about those questionsmyself. I was diagnosed about
two years before my transplantback in 2022 almost two years to
the day, actually. And at thatpoint, they said to me, with
this condition, at some point inyour life, you will need a BMT.
That's the only cure for this.
(07:54):
We predict it'll be in, youknow, 10 or 15 years. And that
timeline obviously shrunk andshortened as the months passed
and my disease progressed, butas soon as I sort of heard that
BMT was likely my future, Istarted thinking about it. Did
Sarah Dabagh (08:07):
anyone ever directly ask you your code
status and my context for that?
In case anyone can't tell fromyour voice is you are young and
otherwise healthy, and the kindof person that by appearance is
saying everyone assumes will bea best case scenario in BMT.
Obviously, everyone not beingyou, giving me your the way that
your brain works and the thingsthat you've seen, but from a BMT
(08:30):
provider's perspective, you areable bodied with healthy organs,
and you're coming into their BMTto be one of their good cases.
And so did anyone ever directlyask you your code status, or was
it implied?
Daniel Eison (08:40):
People did ask, and I was maybe a little bit
over the top, and, well, I don'tknow if I was over that I was I
tried to be very, very clearwith everyone what my
preferences were. I wanted to befull code, and I was very clear
about that to everyone. And Isaid, you know, I'm young, I'm
otherwise healthy. I have ayoung family like, please, if
(09:00):
something happens, do all thethings, like, put me on ECMO,
take me to the ICU, intubate melike I do want you to do all the
things, because I didn't wantanyone to assume that based on
my job, I might not want thesethings and be Oh, he's a
palliative care doctor, like hewouldn't want to suffer. I was
like, no, no. Like, bring on thesuffering. Like I want to live.
Sarah Dabagh (09:19):
So, I mean, we had that conversation. Joanne wolf
said something very similar,right, when we had that
conversation with her, which,you know, she said, just because
this is my line of work, doesn'tmean that if I, when I not, if,
when I get a diagnosis at somepoint that I won't be, you know,
pursuing curative treatment tothe full existence, that I can
Exactly,
Daniel Eison (09:40):
exactly, and, you know, and I also made it clear
to everyone, and especially tomy family in numerous
conversations, that obviously,if the situation changed and my
clinical status was such, youknow, that I wasn't expected to
recover. And then obviously,there were other considerations.
And we talked a lot aboutthings. Like, minimal,
acceptable quality of life. Itried to make it clear to the
(10:03):
important people. I probablytalked about it more than anyone
was expecting me to given theexpectations, you know, like,
like you said, based on my ageand functional status, but like
you said, also based on my pastexperience, I have seen, you
know, not the best outcomes in alot of bmts, and so I knew that
(10:23):
it was something that wasimportant to discuss.
Fortunately, there wasn't anymoment yet in my BMT journey
where I've had to confront thoseissues directly. My hospital
course was extremely smooth asthese things go, you know, and I
didn't at any point feel likethere was a threat of mortality.
(10:44):
But beyond the sort of baselineof just getting transplant, I
think it's it's definitelysomething that was very much in
the forefront of my mind. Howdid
Sarah Dabagh (10:53):
the physical experience of being a patient
align with your expectations? Soit sounds like things work.
Well, happy to hear that nothingis ever completely smooth. Did
you get medications you'veprescribed before? Do you use?
Do you experience anything forthe first time as a patient that
you used to talking about as aprovider or giving as a
provider?
Daniel Eison (11:12):
Yes, all of the above for all that, it was a
smooth experience. It wasunpleasant. It was not fun. I
would not choose to do it again.
It was not exactly what Iexpected in good ways and bad
ways. The biggest surprise forme was that I didn't actually
have that much pain. I've takencare of a lot of kids who ended
up with a lot of mucositis, andthankfully, I did not develop
(11:33):
mucositis, and I was very muchexpecting to I'll put in a major
plug for doing cryotherapyduring chemo infusion, keeping
the mucosa of the mouth andthroat cold during
administration of chemo thatcauses mucositis. I had only one
(11:55):
day during my conditioningregimen when I got melphalan and
about half an hour before andduring the half hour infusion, I
ate Italian ices, pretty muchjust back to back to back
constantly. I ate like 10Italian ices in a row during
chemo, and less
Sarah Dabagh (12:08):
than having your hands in ice baths, absolutely
Daniel Eison (12:11):
better than the cooling cap and the hands in the
ice and all of that stuff. Andit worked. It actually worked. I
did not develop any mucositis.
The hair on my face didn't fallout around the places where my
lips were very cold, so Imaintained a little bit of a
goatee throughout while the hairon my head all did fall out. I
did experience other unpleasantside effects. I had significant
nausea and anorexia. I lost alot of weight while I was in the
(12:34):
hospital because I wasn't eatingvery much. And it was kind of
surprising to me, actually, howquickly the associations are
made between experiences andsensations. Like, if I was
nauseated and trying to forcemyself to eat, it would be hard
to eat that meal again withoutbringing up the feelings of
nausea. There are still certainmenu items from the hospital
(12:57):
that I think about and they makeme feel a little queasy just
thinking about them. And so youbuild these associations. And it
wasn't even just with foods. Itwas like if I was listening to a
particular song at a time when Iwas feeling particularly
physically bad, it was then hardto listen to that song again.
And so that was something that Idon't think I understood, sort
of the strength of thatpsychosomatic connection you
asked about, like, whatmedications I got that I've
(13:19):
prescribed before. I've alwaysloved olanzapine as a
prescriber, and I also love itas a patient. Olanzapine, as
Mary Lynn McPherson said at thelast ah, pm conference,
olanzapine is amazeballs, and Iagree it is a great, great
medication in general, antiemetics are great. At one point,
(13:43):
I got a big dose ofdexamethasone during chemo, made
me a little hypomanic. That wasfun. Didn't expect that. So what
Sarah Dabagh (13:49):
do you think about your experience as a patient?
Will change the way that youcare for patients moving
forward?
Daniel Eison (13:57):
Yeah, that's kind of the big question, right? And
that's a question that I askmyself a lot during this
process, I've kind of beenwondering, like, how will this
change me? I think a couple ofconcrete things before I get
into the bigger stuff. I feellike I will never order a
medication, PRN, ever again. PRNreally does mean patient
(14:17):
receives none, not because noone brings it, but because it's
hard to ask, asking for symptomrelief is scary and kind of
makes you have to be vulnerable.
You have to admit to yourselfthat it's bad enough that you
need someone else to help you,and you have to be honest with
yourself about how bad it is.
And so it's this kind of lack ofcontrol, in some ways, you have
(14:38):
to impose on someone. And maybethis says more about me. Maybe
another thing that I learnedthat I'm going to take back with
me is that the hospital is not anice place to be. I That sounds
simplistic, maybe. And there aremany things about the hospital
that are intended to make theexperience nicer for patients
(14:58):
and families, and they do. Yeah,and people do a great job, and
for all that anyone on themedical team can do, it just
stinks to be in the hospital.
It's boring and lonely. I'm thekind of guy who likes meaning
and metaphors, and I obviouslythought a lot about the kind of
metaphorical and symboliclanguage that I wanted to use to
(15:25):
describe and inhabit thisexperience of transplant, and
then, like when I was in thehospital, like in the thick of
it, it was so easy for themetaphors to just all fall flat.
It was just the hospital is thislike deeply disenchanted space
for a patient in some ways. Soas much as I wanted to think
about what I was doing as arenewal or a quest or a journey
or a battle, or, you know, pickyour favorite metaphor, just
(15:49):
like gritting my teeth and doingwhat I had to do day after day
came down to just like, I don'tknow, shuffling 14 laps around
the floor to get a mile in andlooking at the same boring
landscape photographs over andover and over again, and just
like getting through the hoursand the minutes, you want to
think that it's important andmeaningful, and it's just not in
(16:14):
so many ways, it's deeplyunspecial and UN meaningful. And
I think that might have actuallybeen the hardest part about my
transplant process, or at leastone of the hardest parts, and I
think remembering that for mypatients and their families is
going to be really important.
Leaving the hospital was justsuch a weight off my shoulders.
My physical symptoms got better,just like walking out the door.
(16:37):
It was remarkable, actually, theextent to which, just like going
somewhere else made me feelbetter. So while
Sarah Dabagh (16:45):
that could be a really beautiful, natural ending
point, I mean, ask or makeobservation, maybe ask an
additional question, it does notsurprise me to hear you say that
your physical symptoms lifted asyou physically separated from
the space that was associatedwith your nausea and anorexia
and boredom and all of thesefeelings based on your
observation from before that,that connection, that
(17:06):
circumstantial connection tomusic or food items or whatever
it was when you were feelingpoor, was stronger than you
thought. The opposite of thatfor me, as I think about that,
and as you say that, is to thinkabout, for many of our patients,
and really, many of ourfamilies, how the hospital
becomes such a safe place theyfeel more comfortable being at
(17:29):
in a way that is almost indirect opposition to that
observation that you had. And Idon't know that's because the
home environment for some ofthese kids with medical
complexity and the stresses oftaking care of them in the home
environment is equally or evensometimes more stressful than
taking care of them in thehospital. But it's interesting
that you say that. It's notsurprisingly to say that, but
then in some ways, for me, thatfeels in slight conflict with
(17:53):
how some of our pediatricpatients and their families
experience the hospital setting.
Yeah, I
Daniel Eison (17:57):
agree 100% and I think part of that is that
children's hospitals orpediatric services do a better
job of keeping patients andfamilies happy and engaged. And
one of the lessons I'm takingfrom my now post transplant
experience is that, yeah, beingout of the hospital is hard in
(18:19):
its own way too, thevulnerability that I feel,
especially beingimmunocompromised and during
during flu season and COVIDseason and being now actually
moved back in with my two youngchildren, who in the last two
weeks have both had flu, Idefinitely sort of feel how
(18:39):
scary the Outside world can be,and I feel the scariness of not
having someone there at thepress of a call button, like, if
I have some kind of a symptom,do I need to be evaluated? Is
this the beginning of somethingeven more frightening? And so,
yeah, I can also definitely feelhow patients and families take
comfort in being in the hospitaltoo. Here's a question, Did you
(18:59):
suffer? Yeah, I did, and I thinknot in the ways that I expected
to. You know, I didn't have alot of pain, and we often
complete pain with suffering.
Not having pain threw off mysuffering detector a little bit.
So when I think back, my impulseis to be like, No, I didn't
suffer. I think part of that isalso one of the ways I'm coping
by minimizing the experiencethat I had. Because, as my wife
(19:20):
reminds me, there were many dayswhen I was really quite unhappy
in the hospital. And it's easy,in retrospect, to kind of gloss
over that and be like, yeah,there were a few days there
where I was, you know, didn'teat much, was nauseated and but
it's fine, like I did fine. Igot through it, and I'm past it.
(19:40):
And in the moment, yeah, I was,I was suffering. I think the
other aspect that I consider tobe suffering is, you know, if we
go with Eric cassell'sdefinition where suffering is
that unpleasant experience thatconstitutes a threat to the
integrity of the self, therewere moments, and I still have
moments, even after being inhospital, where, you know, I
worry. About how my life haschanged and whether there are
(20:01):
certain symptoms and certaincompromises and certain features
of being post transplant thatI'm going to live with forever
moving into this more chronicstage just worrying about like,
what is my body like now? Whatis my life going to look like
now, and that, I think, hascaused me some real concern, but
(20:28):
that's an evolving process. Ithink that's something I'm
grappling with just like as wego forward, I'm going to have to
figure out.
Sarah Dabagh (20:39):
So this is usually where we would talk about our
take home points, but I thinkwe'd like to share with you our
listeners, our plans movingforward. We are back. Thank you
for your patience with us duringour hiatus. We are thrilled to
say we're going to be doingmonthly episodes again. We are
getting the ball rolling. We arerusty, and so we also want to
send out an invitation to helpus get a momentum going to
(21:01):
anyone who's listening here tosend us ideas, feedback,
thoughts, offers to be onfriends. You know you'd like to
nominate What Not to Wear, astyle 1998 whatever, and that
was but please reach out. Wewill be starting back up next
month, and we're excited to beback.
Daniel Eison (21:20):
Hey, this is Dan a gain. We recorded this
interview back in February, andnow it's May. So I wanted to say
I'm about six months out fromtransplant and still doing
pretty well. If you'reinterested in helping people who
need bone marrow transplants, Istrongly encourage you to sign
up as a donor in the US. You cando that through the National
Marrow Donor program at nmdp.org. Ifyou're outside the US, I don't
(21:42):
know all the websites, butGoogle does, and I still
encourage you to sign up. Mydonor lives in another country,
so you never know who you mightend up helping. Lastly, I'm
happy to report that that senseof meaning I talked about
wanting has continued to grow,in part thanks to recording and
editing this very podcastepisode. So thank you listeners,
(22:03):
and of course, Sarah for makingthat possible.
Thanks forlistening. Our theme song was
written by Kevin MacLeod. Youcan follow us on bluesky, where
our username is, PediPal.bsky.social. You can find thenotes for this episode and all
the others on our website,pedipal.org if you'd like to
submit thoughts, objections orideas for future episodes,
(22:25):
please reach out through theemail on our site. This has been
PediPal, see you next month.
It's funny because I don't evenreally remember what I said in
the interview. It's been awhile. I think
Sar (22:35):
I think we ended with, did you suffer? I did, you know,
like, I think we ended on...
Daniel (22:41):
Should I say something like, Hey guys, I'm not
suffering so much now. Like, heyfor anyone worried not I'm not
actually suffering. I don'tknow. Is it okay not to end it
on a bright and breezy I thinkso. It's palliative care. People
are used to that. I.
Hi. This is Sarah, and this is Dan, and we'd like
to welcome you to PediPal. Anow restarted, now alive
palliative podcast about allthings pediatric palliative
care. We're back, baby. Yeah, weare. Where have you been, Dan?
Oh, let me tell you. Is that howwe're gonna start this?
Daniel Eison (00:15):
I think we're started exactly that way,
probably with that phrase. I'mgonna, I'm gonna use that. Hi.
This is Sarah, and this is Dan,and
Sarah Dabagh (00:26):
we'd like to welcome you back to PediPal.
Daniel Eison (00:29):
In case you've forgotten, a podcast about all
things pediatric palliativecare.
Sarah Dabagh (00:34):
If you are listening to this in the year
2026, or beyond, on yourpodcast, manager, you may not
realize but for the rest of you,you may have noticed that there
has been a several month gapsince our last recording.
Dani (00:45):
We're glad to be back, and we're going to do things a
little bit differently in thisepisode than we've ever done
before. Kind of ease back intohosting a podcast. Usually we
have guests join us, but thistime, it's just the two of us,
and we're going to talk a littlebit about what we've been doing
and thinking about since ourlast episode.
Sarah Dabagh (01:08):
That is a very broad way to introduce the
subject. I will narrow it down alittle bit. Would you like to
share? You like to go ahead andshare? I think none of us know
how to be like So Dan, how wasyour life changing medical
experience?
Daniel Eiso (01:23):
So our last episode came out in September of 2024
and then in October of 2024 Igot an allogeneic stem cell
transplant for myelofibrosis. Ihad my transplant done at
Memorial Sloan Kettering in NewYork City, and today, on the day
we're recording this, I'm dayplus 117 post transplant. I
(01:48):
spent almost four weeks in thehospital and then got
discharged, and at this point,I'm doing pretty well.
Sarah Dabagh (01:54):
I actually wonder if you can share, I can share a
little bit about your backgroundwith bmts and why it seemed
especially poignant that that iswhat you were getting.
Daniel Eison (02:04):
The poignant and ironic thing is that not only do
I practice in pediatricpalliative care, but after my
fellowship and before I was ableto find a job doing pediatric
palliative care, I worked forabout two and a half years as a
hospitalist on a pediatriconcology floor, and I spent
about a third of that time onthe BMT service. So I have taken
(02:27):
care of many kids who wereundergoing bone marrow
transplant while they were inthe hospital. And as you might
guess, that was a double edgedsword for me going into this
process. What was the good edgeof that sword? I mean, there
were definitely some goodthings. I had a lot of knowledge
about what a BMT might looklike, and when my team talked to
(02:49):
me about different things toexpect, like the conditioning
regimen or the side effects, Icould say pretty confidently,
yeah, I know I've heard aboutthese things, and I knew what it
looked like, and that washelpful, I hope, for my team,
but also helpful for me. Itwasn't a big mystery. Going into
it, I could say I've seen this.
(03:10):
I kind of know what I'm goingI'm going in with my eyes open.
I know what to expect, in somerespects,
Sarah Dabagh (03:14):
natural follow up question. The other edge of that
sword, I think,
Daniel Eison (03:18):
both working as a hospitalist and especially
working in palliative care, Iwas pretty attuned to all of the
things that can be unpleasantduring the process of getting a
transplant. I had seen EMTs witha lot of complications and a lot
of things have gone wrong. Soone other thing that was kind of
interesting for me from thehospitalist perspective, maybe
one thing that it didn't prepareme for as a hospitalist, I was
(03:40):
purely on the inpatient side,and so I saw all the acute parts
of the transplant, you know, theweek of conditioning, and then a
few weeks post, and the majorityof this time, and the majority
of this process is an outpatientprocess for me, and I'm grateful
that I didn't have to spendlonger in the hospital. But
nothing that I did as ahospitalist kind of prepared me
for what this would be likebefore going to the hospital or
(04:01):
after leaving the hospital.
Sarah Dabagh (04:02):
So did you tell them that you were a doctor, or
did they figure it out? Or didyou tell them exactly what it is
that you practice?
Daniel Eison (04:08):
Yeah, I really wanted them to be aware of that,
and I wanted them to be awarethat I was a palliative care
doctor, because I know that therelationship between palliative
care and oncology is, to say theleast, and a complicated one,
and I figured it was going to behaving a major influence on how
I perceived my transplant, andso I wanted the team not to be
(04:29):
surprised by that. What's
Sarah Dabagh (04:30):
the relationship with palliative care like there?
Daniel Eison (04:33):
So I did meet the palliative care team, the adult
palliative care team. I metseveral members of their team.
They are awesome. I requestedit. I think I would not have
gotten a palliative care consultif I didn't request it. It is
not standard for every BMT, andI requested it very early on,
like pretty much my firsttransplant clinic visited
because I didn't want to bethinking about palliative care
(04:59):
stuff. I wanted to be. Totally apatient, and so I wanted to kind
of outsource palliative care,thinking to someone else, and
they were receptive to that.
Everyone's attitude about merequesting palliative care was
kind of benignly bemused. Theydidn't totally see why I needed
it, but they were happy tocooperate. So
Sarah Dabagh (05:20):
as you talk about outsourcing palliative work, not
being your own palliative doc,are you thinking about
anticipatory symptom needs asyou have this conversation, or
are you really thinking, I needsomeone to talk through all my
if and when and hopes and wishesand worries?
Daniel Eison (05:36):
I mean, both?
Yeah, that's kind of all I haveto say about that. It was both.
Was both things, okay,
Sarah Dabagh (05:42):
what did they ask you questions that you expected?
Did how they practicedpalliative care there align with
your expectations and your ownpractice?
Daniel Eison (05:51):
Yeah, I would say so there were no real surprises.
What I was actually reallysurprised by, though, was they
weren't the only ones asking mepalliative care questions. There
was this telehealth visit I hada little bit before I was
admitted with a nursepractitioner from the BMT team.
I didn't really know what thevisit was going to be about, but
(06:13):
she introduced herself and said,You know, I'm going to ask you
some questions, and I understandthese might be sensitive
questions, personal questions,and so if you're not
comfortable, like, feel free notto answer anything. And I'm I'm
like, What? What is she gonnatalk about? Like, what is this?
What is this about? And shegoes, you know, just first of
all, like, what can you tell meabout yourself? Is there
(06:33):
anything about you that weshould know to help us provide
better care for you? And I waslike, oh, first thing you should
know, I'm a pediatric palliativecare doctor. I know exactly what
questions you're going to askme. I ask these questions every
day, but go ahead, like, let'stalk. And she then proceeded to
ask me, like the five initialconsult questions, what are your
(06:54):
hopes and what are your fears?
And tell me about your supports.
And I was like, it's great. Andwe had a kind of a meta
conversation about it all. And Iasked her, you know, are you
trained in palliative care? Andshe said, No, I'm just, you
know, a BMT. NP, I've been doingthis for 20 years. And I said,
you're like, you're really goodat it. Like, this is palliative
care. Like, this is what I doall day. And this has been a
great conversation. And so itwas kind of, it was kind of
(07:16):
funny that that's where that wascoming from. You know,
palliative care wasn'tspecifically integrated into
BMT. They weren't doingautomatic consults, but I did a
palliative care initial consultwith the BMT team. Essentially
Sarah Dabagh (07:29):
did your answers to any of those questions
surprise you.
Daniel Eison (07:33):
I don't think they surprised me, because I've been
thinking about those questionsmyself. I was diagnosed about
two years before my transplantback in 2022 almost two years to
the day, actually. And at thatpoint, they said to me, with
this condition, at some point inyour life, you will need a BMT.
That's the only cure for this.
(07:54):
We predict it'll be in, youknow, 10 or 15 years. And that
timeline obviously shrunk andshortened as the months passed
and my disease progressed, butas soon as I sort of heard that
BMT was likely my future, Istarted thinking about it. Did
Sarah Dabagh (08:07):
anyone ever directly ask you your code
status and my context for that?
In case anyone can't tell fromyour voice is you are young and
otherwise healthy, and the kindof person that by appearance is
saying everyone assumes will bea best case scenario in BMT.
Obviously, everyone not beingyou, giving me your the way that
your brain works and the thingsthat you've seen, but from a BMT
(08:30):
provider's perspective, you areable bodied with healthy organs,
and you're coming into their BMTto be one of their good cases.
And so did anyone ever directlyask you your code status, or was
it implied?
Daniel Eison (08:40):
People did ask, and I was maybe a little bit
over the top, and, well, I don'tknow if I was over that I was I
tried to be very, very clearwith everyone what my
preferences were. I wanted to befull code, and I was very clear
about that to everyone. And Isaid, you know, I'm young, I'm
otherwise healthy. I have ayoung family like, please, if
(09:00):
something happens, do all thethings, like, put me on ECMO,
take me to the ICU, intubate melike I do want you to do all the
things, because I didn't wantanyone to assume that based on
my job, I might not want thesethings and be Oh, he's a
palliative care doctor, like hewouldn't want to suffer. I was
like, no, no. Like, bring on thesuffering. Like I want to live.
Sarah Dabagh (09:19):
So, I mean, we had that conversation. Joanne wolf
said something very similar,right, when we had that
conversation with her, which,you know, she said, just because
this is my line of work, doesn'tmean that if I, when I not, if,
when I get a diagnosis at somepoint that I won't be, you know,
pursuing curative treatment tothe full existence, that I can
Exactly,
Daniel Eison (09:40):
exactly, and, you know, and I also made it clear
to everyone, and especially tomy family in numerous
conversations, that obviously,if the situation changed and my
clinical status was such, youknow, that I wasn't expected to
recover. And then obviously,there were other considerations.
And we talked a lot aboutthings. Like, minimal,
acceptable quality of life. Itried to make it clear to the
(10:03):
important people. I probablytalked about it more than anyone
was expecting me to given theexpectations, you know, like,
like you said, based on my ageand functional status, but like
you said, also based on my pastexperience, I have seen, you
know, not the best outcomes in alot of bmts, and so I knew that
(10:23):
it was something that wasimportant to discuss.
Fortunately, there wasn't anymoment yet in my BMT journey
where I've had to confront thoseissues directly. My hospital
course was extremely smooth asthese things go, you know, and I
didn't at any point feel likethere was a threat of mortality.
(10:44):
But beyond the sort of baselineof just getting transplant, I
think it's it's definitelysomething that was very much in
the forefront of my mind. Howdid
Sarah Dabagh (10:53):
the physical experience of being a patient
align with your expectations? Soit sounds like things work.
Well, happy to hear that nothingis ever completely smooth. Did
you get medications you'veprescribed before? Do you use?
Do you experience anything forthe first time as a patient that
you used to talking about as aprovider or giving as a
provider?
Daniel Eison (11:12):
Yes, all of the above for all that, it was a
smooth experience. It wasunpleasant. It was not fun. I
would not choose to do it again.
It was not exactly what Iexpected in good ways and bad
ways. The biggest surprise forme was that I didn't actually
have that much pain. I've takencare of a lot of kids who ended
up with a lot of mucositis, andthankfully, I did not develop
(11:33):
mucositis, and I was very muchexpecting to I'll put in a major
plug for doing cryotherapyduring chemo infusion, keeping
the mucosa of the mouth andthroat cold during
administration of chemo thatcauses mucositis. I had only one
(11:55):
day during my conditioningregimen when I got melphalan and
about half an hour before andduring the half hour infusion, I
ate Italian ices, pretty muchjust back to back to back
constantly. I ate like 10Italian ices in a row during
chemo, and less
Sarah Dabagh (12:08):
than having your hands in ice baths, absolutely
Daniel Eison (12:11):
better than the cooling cap and the hands in the
ice and all of that stuff. Andit worked. It actually worked. I
did not develop any mucositis.
The hair on my face didn't fallout around the places where my
lips were very cold, so Imaintained a little bit of a
goatee throughout while the hairon my head all did fall out. I
did experience other unpleasantside effects. I had significant
nausea and anorexia. I lost alot of weight while I was in the
(12:34):
hospital because I wasn't eatingvery much. And it was kind of
surprising to me, actually, howquickly the associations are
made between experiences andsensations. Like, if I was
nauseated and trying to forcemyself to eat, it would be hard
to eat that meal again withoutbringing up the feelings of
nausea. There are still certainmenu items from the hospital
(12:57):
that I think about and they makeme feel a little queasy just
thinking about them. And so youbuild these associations. And it
wasn't even just with foods. Itwas like if I was listening to a
particular song at a time when Iwas feeling particularly
physically bad, it was then hardto listen to that song again.
And so that was something that Idon't think I understood, sort
of the strength of thatpsychosomatic connection you
asked about, like, whatmedications I got that I've
(13:19):
prescribed before. I've alwaysloved olanzapine as a
prescriber, and I also love itas a patient. Olanzapine, as
Mary Lynn McPherson said at thelast ah, pm conference,
olanzapine is amazeballs, and Iagree it is a great, great
medication in general, antiemetics are great. At one point,
(13:43):
I got a big dose ofdexamethasone during chemo, made
me a little hypomanic. That wasfun. Didn't expect that. So what
Sarah Dabagh (13:49):
do you think about your experience as a patient?
Will change the way that youcare for patients moving
forward?
Daniel Eison (13:57):
Yeah, that's kind of the big question, right? And
that's a question that I askmyself a lot during this
process, I've kind of beenwondering, like, how will this
change me? I think a couple ofconcrete things before I get
into the bigger stuff. I feellike I will never order a
medication, PRN, ever again. PRNreally does mean patient
(14:17):
receives none, not because noone brings it, but because it's
hard to ask, asking for symptomrelief is scary and kind of
makes you have to be vulnerable.
You have to admit to yourselfthat it's bad enough that you
need someone else to help you,and you have to be honest with
yourself about how bad it is.
And so it's this kind of lack ofcontrol, in some ways, you have
(14:38):
to impose on someone. And maybethis says more about me. Maybe
another thing that I learnedthat I'm going to take back with
me is that the hospital is not anice place to be. I That sounds
simplistic, maybe. And there aremany things about the hospital
that are intended to make theexperience nicer for patients
(14:58):
and families, and they do. Yeah,and people do a great job, and
for all that anyone on themedical team can do, it just
stinks to be in the hospital.
It's boring and lonely. I'm thekind of guy who likes meaning
and metaphors, and I obviouslythought a lot about the kind of
metaphorical and symboliclanguage that I wanted to use to
(15:25):
describe and inhabit thisexperience of transplant, and
then, like when I was in thehospital, like in the thick of
it, it was so easy for themetaphors to just all fall flat.
It was just the hospital is thislike deeply disenchanted space
for a patient in some ways. Soas much as I wanted to think
about what I was doing as arenewal or a quest or a journey
or a battle, or, you know, pickyour favorite metaphor, just
(15:49):
like gritting my teeth and doingwhat I had to do day after day
came down to just like, I don'tknow, shuffling 14 laps around
the floor to get a mile in andlooking at the same boring
landscape photographs over andover and over again, and just
like getting through the hoursand the minutes, you want to
think that it's important andmeaningful, and it's just not in
(16:14):
so many ways, it's deeplyunspecial and UN meaningful. And
I think that might have actuallybeen the hardest part about my
transplant process, or at leastone of the hardest parts, and I
think remembering that for mypatients and their families is
going to be really important.
Leaving the hospital was justsuch a weight off my shoulders.
My physical symptoms got better,just like walking out the door.
(16:37):
It was remarkable, actually, theextent to which, just like going
somewhere else made me feelbetter. So while
Sarah Dabagh (16:45):
that could be a really beautiful, natural ending
point, I mean, ask or makeobservation, maybe ask an
additional question, it does notsurprise me to hear you say that
your physical symptoms lifted asyou physically separated from
the space that was associatedwith your nausea and anorexia
and boredom and all of thesefeelings based on your
observation from before that,that connection, that
(17:06):
circumstantial connection tomusic or food items or whatever
it was when you were feelingpoor, was stronger than you
thought. The opposite of thatfor me, as I think about that,
and as you say that, is to thinkabout, for many of our patients,
and really, many of ourfamilies, how the hospital
becomes such a safe place theyfeel more comfortable being at
(17:29):
in a way that is almost indirect opposition to that
observation that you had. And Idon't know that's because the
home environment for some ofthese kids with medical
complexity and the stresses oftaking care of them in the home
environment is equally or evensometimes more stressful than
taking care of them in thehospital. But it's interesting
that you say that. It's notsurprisingly to say that, but
then in some ways, for me, thatfeels in slight conflict with
(17:53):
how some of our pediatricpatients and their families
experience the hospital setting.
Yeah, I
Daniel Eison (17:57):
agree 100% and I think part of that is that
children's hospitals orpediatric services do a better
job of keeping patients andfamilies happy and engaged. And
one of the lessons I'm takingfrom my now post transplant
experience is that, yeah, beingout of the hospital is hard in
(18:19):
its own way too, thevulnerability that I feel,
especially beingimmunocompromised and during
during flu season and COVIDseason and being now actually
moved back in with my two youngchildren, who in the last two
weeks have both had flu, Idefinitely sort of feel how
(18:39):
scary the Outside world can be,and I feel the scariness of not
having someone there at thepress of a call button, like, if
I have some kind of a symptom,do I need to be evaluated? Is
this the beginning of somethingeven more frightening? And so,
yeah, I can also definitely feelhow patients and families take
comfort in being in the hospitaltoo. Here's a question, Did you
(18:59):
suffer? Yeah, I did, and I thinknot in the ways that I expected
to. You know, I didn't have alot of pain, and we often
complete pain with suffering.
Not having pain threw off mysuffering detector a little bit.
So when I think back, my impulseis to be like, No, I didn't
suffer. I think part of that isalso one of the ways I'm coping
by minimizing the experiencethat I had. Because, as my wife
(19:20):
reminds me, there were many dayswhen I was really quite unhappy
in the hospital. And it's easy,in retrospect, to kind of gloss
over that and be like, yeah,there were a few days there
where I was, you know, didn'teat much, was nauseated and but
it's fine, like I did fine. Igot through it, and I'm past it.
(19:40):
And in the moment, yeah, I was,I was suffering. I think the
other aspect that I consider tobe suffering is, you know, if we
go with Eric cassell'sdefinition where suffering is
that unpleasant experience thatconstitutes a threat to the
integrity of the self, therewere moments, and I still have
moments, even after being inhospital, where, you know, I
worry. About how my life haschanged and whether there are
(20:01):
certain symptoms and certaincompromises and certain features
of being post transplant thatI'm going to live with forever
moving into this more chronicstage just worrying about like,
what is my body like now? Whatis my life going to look like
now, and that, I think, hascaused me some real concern, but
(20:28):
that's an evolving process. Ithink that's something I'm
grappling with just like as wego forward, I'm going to have to
figure out.
Sarah Dabagh (20:39):
So this is usually where we would talk about our
take home points, but I thinkwe'd like to share with you our
listeners, our plans movingforward. We are back. Thank you
for your patience with us duringour hiatus. We are thrilled to
say we're going to be doingmonthly episodes again. We are
getting the ball rolling. We arerusty, and so we also want to
send out an invitation to helpus get a momentum going to
(21:01):
anyone who's listening here tosend us ideas, feedback,
thoughts, offers to be onfriends. You know you'd like to
nominate What Not to Wear, astyle 1998 whatever, and that
was but please reach out. Wewill be starting back up next
month, and we're excited to beback.
Daniel Eison (21:20):
Hey, this is Dan a gain. We recorded this
interview back in February, andnow it's May. So I wanted to say
I'm about six months out fromtransplant and still doing
pretty well. If you'reinterested in helping people who
need bone marrow transplants, Istrongly encourage you to sign
up as a donor in the US. You cando that through the National
Marrow Donor program at nmdp.org. Ifyou're outside the US, I don't
(21:42):
know all the websites, butGoogle does, and I still
encourage you to sign up. Mydonor lives in another country,
so you never know who you mightend up helping. Lastly, I'm
happy to report that that senseof meaning I talked about
wanting has continued to grow,in part thanks to recording and
editing this very podcastepisode. So thank you listeners,
(22:03):
and of course, Sarah for makingthat possible.
Thanks forlistening. Our theme song was
written by Kevin MacLeod. Youcan follow us on bluesky, where
our username is, PediPal.bsky.social. You can find thenotes for this episode and all
the others on our website,pedipal.org if you'd like to
submit thoughts, objections orideas for future episodes,
(22:25):
please reach out through theemail on our site. This has been
PediPal, see you next month.
It's funny because I don't evenreally remember what I said in
the interview. It's been awhile. I think
Sar (22:35):
I think we ended with, did you suffer? I did, you know,
like, I think we ended on...
Daniel (22:41):
Should I say something like, Hey guys, I'm not
suffering so much now. Like, heyfor anyone worried not I'm not
actually suffering. I don'tknow. Is it okay not to end it
on a bright and breezy I thinkso. It's palliative care. People
are used to that. I.
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