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I'm Dr. Tom Fishbein,
I'm the executive director of the MedStar Georgetown Transplant Institute.
I'm a surgeon the primarily sees patients who need liver transplants
or have liver or pancreas tumors and does small bowel transplants.
There's an exceptional value and importance placed
on how we care for patients in this hospital.
The term "cura personalis" refers to caring for the whole patient
and that's the motto of this hospital
and that's really taken very seriously.
We have developed over the last decade here into an extremely robust
and multi-disciplinary program for the care
of patients who come for transplants.
The quality of the nursing care, the social workers,
all the other different personnel in addition to the doctors and surgeons
who are involved in the care of patients are all extremely high
and extremely important to the way our care is delivered.
Transplantation is one of the rare and unique fields in which
we give something more to the person than they had when they came to you.
And that's very transformative in the life of a patient who gets a transplant.
People celebrate the birthday of their transplant like their birthday every year.
I think our goal is similar for every patient and that is to maximize
the length of their lives and the quality that they have in that life.
And how we get there will be very unique and individualized for each person.
The MedStar Georgetown Transplant Institute is a somewhat unique setup
in which we have medical doctors and surgeons,
nurse practitioners, social workers, dietitians,
all working together
in pediatrics and adult care in the same institute
so that our global goal is all the same.
We're not in different departments or different institutions
being brought together to care for somebody.
We live and exist together to care for patients who need transplants.
I find it tremendously gratifying to be able to work with the people that I work with.
Every day I come in and see different people in different job titles
and types of educational backgrounds working together
to take care of our patients.
We have a really tremendous, committed and caring team
and I think that's really what gives me pause when I come to work.
Small bowel transplantation is a fairly young field over all.
I've been in it since close to the beginning. I started out in the mid 1990's.
We began the program here at MedStar Georgetown in 2003
and that makes us one of the most experienced programs in the country at this point.
We've done around 200 small bowel transplants and have among the top results
in the world.
There are a variety of different diseases that cause people to need
a bowel transplant. The general underlying problem is called intestinal failure.
And failure of your intestine where you can't eat and absorb your food
well enough to stay alive without some sort of extra support
is what leads to the possibility of a transplant.
We can keep people alive when they can't eat and absorb food
by keeping them on intravenous nutrition called TPN:
Total Parenteral (or intravenous) Nutrition.
And that's good for a short period of time.
Some patients can live for years or even decades on TPN,
most, though, go on to develop complications of it.
The need for TPN and the cause of intestinal failure is a little bit different
in different people. There are 3 general categories of causes
of intestinal failure. The majority of patients have what is called
short bowel syndrome. They were either born with not enough small intestine
to absorb food, or a surgeon, for whatever reason,
had to remove some of the small bowel.
And so their bowel is shorter than normal
and they can't absorb the normal amount of nutrients.
Another class of diseases causes a motility disturbance of the bowel.
If you think of your garden hose and how it wiggles when you turn the water on,
the small bowel has the same propulsive motion
that pushes the food through the intestine.
And a motility disorder is a disorder in which there isn't that propulsive activity
to move the food through the intestine.
It sits still in the intestine, it gets over-grown with with microbes,
and people get infections and other problems as a result of it.
So people with motility disorders also have intestine failure and need to be nourished
with intravenous nutrition like TPN.
Then there's a small subset of population that has problems
with the cells that line the intestine.
The intestine wiggles correctly and has motility, it's not too short,
but the cells that line the intestine don't work right
and won't absorb the nutrients that are in the lumen of the bowel.
So those are called epithelial disorders
and they're very common in childhood. Most children who have those,
if they don't receive a transplant, die before they reach a couple of years old.
We certainly have. Many of the people who have short bowel syndrome
particularly in adulthood, have suffered some sort of trauma.
It can be cause when a person is undergoing surgery for another reason,
or it can be caused by something unrelated to surgery, for instance:
people get in car accidents and have a seat-belt injury
to the artery that brings the blood-flow to the intestine
and they may then lose the whole intestine.
So sure, we have patients who have been sent to our program
from all over the United States from major trauma centers
where they have had the bowel re-sected and have short bowel syndrome.
Like with other organ transplants,
when a donor has passed on and their family has agreed to organ donation
that organ is assessed for the quality and the size and the matching
to a potential candidate on our list.
If we find that that's the perfect match for our recipient,
we will often travel to the site where the donor is,
procure the organ in the operating room there and bring it back.
Logistics are very important because we like to transplant that organ within 12 hours
of taking it out of the donor.
And so we will bring it back and have another surgical team
here at MedStar Georgetown
who's beginning the transplant process on the patient on our list.
It depends on what organs are required,
and there's some variation for different patients.
Some patients will need only an intestine. If you need only an intestine,
the transplant is relatively straight forward technically,
and will take somewhere from 4-6 hours on average.
Many patients have developed liver failure while being treated with the TPN.
If your patient has TPN-related liver failure
they often will need a multi-organ transplant.
Either a liver and bowel or a liver, stomach and bowel,
some patients, in fact, will even get a five-organ transplant in which
they get a stomach, a liver, a pancreas, a small bowel and either a kidney
or in some times - the large bowel as well.
Those are much more complex operations, they'll be longer
and the patient's stay at the hospital will be expected to be longer too.
It really depends on the individual patient and what type of organs they need.
Small children may wait a little bit longer than adults
because we need the perfectly size-matched donor organ
for the size of that little baby,
older individuals might have a little bit shorter waiting time.
But the most important point is usually whether the patient needs a liver
with the small bowel, because obtaining approval for the liver
often slows the process.
Most patients who initially have intestinal failure
are put on Total Parenteral Nutrition.
This can be a fairly routine treatment after one gets used to it,
so that the TPN can be given overnight, it can be cycled
so that the intravenous line is unhooked during the day
and patients can have a fairly good quality of life for a period of time on TPN.
There are a variety of different surgical options that may help to rehabilitate
the failing bowel, and that is something that we're experts in.
So there are operations that can lengthen the bowel, that can narrow the bowel
and improve the motility for patients who have motility disorders,
and other types of remedial operations that we can do,
sometimes, to be able to ween a patient off of the intravenous feeding
and get them back to eating again.
That's our ultimate goal.
When we can find patients with intestine failure
and achieve nutritional independence for them and get them back to eating
and off TPN, that's our primary goal.
When that's impossible,
when the surgical problems are too great
or the short bowel is too short to improve the function of,
then sometimes we'll move on to a transplant.
And the decision to move on to a transplant
is one that we and the patient need to make together.
We consider those things, like the quality of life and the lifestyle
that a patient is able to maintain on TPN,
we consider things like complications that they might have had.
Patients get severe and recurrent infections in their intravenous lines sometimes,
some patients get jaundiced and begin to get liver failure,
other patients may suffer from pancreatitis - an inflammation in the pancreas
also caused by the TPN. Each of those complications that may occur
are taken in the context of an individual patient
and we and that patient have to make the decision together
when we feel that those complications are getting bad enough
that we should move to a transplant.
You don't automatically need a small bowel transplant if you have intestinal failure.
It's critical to be in a specialty center
where one set of physicians and nutritionists evaluate you
and consider all the different options that can be used to try
to rehabilitate your bowel.
This is very very important, and there are very few centers
that really integrate all these different things together.
As an example: we have specialists that manage TPN.
We have short bowel surgeons who try to lengthen or narrow the bowel
and make it work better.
We have transplant surgeons who transplant either the intestine
or multi-organ graphs.
We have TPN nutrition specialists
who manage TPN and tube feeding, for instance,
and special short bowel diets working with the patient
to try to achieve nutritional autonomy.
And all these are very very important to work in an integral way together
in trying to achieve nutritional independence.
Interestingly there are some new lipid preparations that have come about
only in the recent past
which seem to improve the side-effect profile of TPN.
So while small babies particularly on TPN
usually used to go on to develop liver failure
over the first few years of life, we see that less and less.
Now, there are only very few centers that have access to some of these,
one of which is commonly known as Omegaven
which has gotten a lot of press recently.
Omegaven is available in our program here,
and in selected circumstances we will take patients who are on TPN
and change the formula to include that or make other changes in the formula
to resolve evolving liver disease, and the liver will return to normal in fact,
and patients sometimes can elect to continue on TPN.
So we're getting better and better with TPN over time.
Depends on the needs of the child,
but we've done transplants on children as small as 3-4 months of age.
Particularly those children who are developing liver failure that early on.
Usually patients come to MedStar Georgetown Transplant Institute
for a small bowel evaluation
and we will do a comprehensive look over everything that's happened
along the course of their medical care.
We will then take a fresh look
at what new information we can gather
and that will often require multiple tests, sometimes upper GI series,
CT scans or MRIs, as well as a host of different blood testing.
And then we will make a prescription for a plan to try for that patient
to try to optimize their intestinal function.
So it's very important to recognize that Omegaven is not
a FDA approved medication right now.
It's available only at selected centers
that have a special agreement with the FDA and the company
to be able to provide it in cases where liver disease is beginning to occur
in patients treated on TPN.
And we use it in special protocols for patients who are developing TPN
in order to try to improve their liver function.
There is preliminary evidence that this and other lithic preparations
that are out there may improve liver function
and be better than standard TPN in selected circumstances.
We are studying it the way other centers also are studying this new preparation
in hopes that this is going to improve the outcomes of TPN in the long run.
Yes. One of the most important things the weighs on the outcome
of patients with intestine failure is getting to a specialized center like ours
early in the course of their disease.
We used to see and still sometimes see patients who have been handled
by many different doctors in different hospitals and different practices for years
and finally make it to us when they're very debilitated
at the end stage of their disease.
Sometimes it's too late to help a patient like that.
What's important is getting an opinion and a treatment option
early in the course of the disease
when the side effects of treatment can be reversible and we can make
big improvements in patients' health.
When a patients first gets referred for a bowel transplant
their medical records will come to one of our dietitians.
And one of our dietitians will review their whole history
with one of our transplant surgeons.
They together will make a plan to bring the patient for an evaluation
that usually takes several days
and incorporates all the testing that would be required to make a treatment plan.
We then listen to the patient, hear and understand what the problems
with the current prescription are,
and what the problems with the intestinal tract are.
Then we have weekly meetings
in which all different specialists attend the meeting.
So we have TPN specialists,
we have intestine rehabilitation surgeons,
we have transplant surgeons, we have dietitians, social workers,
and they take into consideration the entirety of the patient's situation
to put the bowel failure treatment plan together.
Bowel transplantation has been the center piece of the research program
for MedStar Georgetown's transplant programs.
So we've done seminal work in the area of inflammation in the bowel
and in the prevention of rejection of the organ transplants.
Some of this research program has been part of the reason
that we've developed the largest and most comprehensive program in the United States.
One of the challenges of having become a national and international
referral center for intestinal transplant has been figuring out
how to make it easy for patients to come from far away
and in fact, we have patients come from all over the United States
as well as internationally.
To deal with this, the first thing we did was build a pediatric in-patient unit
in which a family can in fact live in the room with a candidate
while they're being evaluated for transplant or other treatments.
That's been a wonderful benefit to us and we have 4 large suites
in the transplant unit, that have full baths and storage facilities
for clothes and toiletries and the like where a family can live in with the patient.
On the adult side, we found people prefer to stay outside of the hospital
even if the patient himself is in the hospital,
and so we founded and established 2 apartment complexes
which we reserved just for the families of patients
who are undergoing evaluation for transplants.
This is a very important question and I think it's important to recognize
that the patient and their family are the key after the transplant
to their long-term success.
If people do it right to take care of themselves,
they set themselves on a course to long-term recovery.
If they do it wrong, then problems can arise.
When patients come from far away
we usually ask that they stay in the area for a minimum of 6 weeks,
sometimes 3 months, because this is the critical period after the transplant
when we set the course of immunology for the transplant itself
and for the patient's body accepting the organ.
If that's done right, there's a long-term success.
We need to prevent rejection of the transplanted organ
and promote acceptance of the body to the organ.
In order to do this, we essentially weaken the immune system
by taking medications called "immune suppressants".
Those medications are used in high dose for the first couple of weeks
after the transplant, but they're weaned down by about 3 months
after transplant to relatively low levels.
Because a patient is with a state of weakened immune system
during those few months, they're more susceptible to infections
and during that period of time they'll also take antibiotics
to prevent those types of infections.
For small bowel transplantation, MedStar Georgetown
probably has the most comprehensive program that exists in the United States today.
We're very proud of the work that we've done since 2003
when we first established the program.
We have patients come from all over the world for bowel transplantation
and for other associated treatments with intestine failure
here at MedStar Georgetown.
We have research programs that we offer to both children and adults
that may be on TPN or may be after the transplant.
There are a whole variety of those, we have a multi-disciplinary team
of dietitians, nutritionists, TPN specialists, surgeons,
physicians and social workers who deal with these patients.
And I think the depth of experience that has resulted
from over 17 years of experience in this field is really exceptional.
Small bowel rehabilitation refers to the same sort of work that one would go through
if they break their leg.
When you break your leg, it's broken then,
but it doesn't mean you'll never walk again.
But you've got to work and learn a new way to do exercise in order to make it
strong and healthy again.
And we do those same sorts of exercises with the bowel.
We can do surgery, we can use medical treatments,
we can use feeding which is liquid rather than solid food,
or fed through a tube rather than taken by mouth,
and those sorts of things strengthen and improve the function of the bowel
just like your muscles in your broken leg get better over time.
Often, that is the case. In fact, the majority of patients
who get referred to our center don't end up going on to an intestinal transplant.
While that is the most exciting and comprehensive treatment
that some patients need, in fact, our goal is to avoid transplant
in the majority of patients and in the majority of patients
we can use these other techniques to improve the function of the bowel
and in fact avoid the need for a transplant.
Well, it certainly is. We have got probably the most experienced team
in the United States performing bowel transplant,
and in fact, while it was very young when we started out in this field
we've developed many of the techniques that are used by most teams today
in the field.
The transplants used to take 12-16 hours on average to do.
Now we are able to perform most of these in 4-6 hours.
Actually, the treatment of intestinal failure has improved remarkably
over the last decade. As we and the few other centers that do it this way
have developed inter-disciplinary teams of management
what we found is that we've cut down the rate of liver disease
and liver failure very significantly
in using new treatment techniques.
The outcomes of the transplants have gotten remarkably better.
It was about a 50% one-year success rate with bowel transplant
when I started in this field 17 years ago.
Now - 90% of patients have a successful outcome at one year after the transplant.
So things are evolving very rapidly in this field.
It's critical to be treated in a program that incorporates
the latest treatments, the latest immune suppression techniques
and the latest bowel rehabilitation techniques.
That's an excellent question.
It's very important when you travel far away to a bowel transplant program
to have a local doctor who works in concert with us
in order to assure good care for you.
So it's been our standard protocol that we identify a patient
and a doctor in their home area
who's usually a gastroenterologist,
but sometimes can be a general pediatrician or internal medicine doctor
who becomes the liaison between the patient and us.
Often, patients will go home and they will need endoscopy
or mild medical changes in their medication regime
and when we can work with that doctor to facilitate those things
we avoid a lot of travel back and fourth across the country to our center.
It's critically important. Like with any other medical treatment,
the patient is the one who is the most important person being treated
and they are the steward of the new organ transplant
and can set the course for success for themselves.
If you're a good patient, compliant,
come to your medical visits,
we are able to get laboratory testing when we need it
and make decisions with you,
we usually can set a successful course.
We the doctors will do some of it
but the majority of teaching gets done by social workers, dietitians
and nurse practitioners who are available 24 hours a day, 7 days a week.
So if you go home from your transplant and have a question in the middle of the night
you'll call and get one of our transplant nurses
who's a specialist in bowel transplantation.
During the day you'll either reach myself or one of our other surgeons,
if we're in the operating room, you'll reach one of our nurse practitioners
who is especially trained in this area.
We have a team of 5 small bowel transplant surgeons
and 3 gastroenterologists who just take care of these patients.
We have a call service that's on 24 hours a day, 7 days a week.
So if you're a transplant patient and you need something
you'll call through one of our nurse specialists
and that call will be evaluated and then routed directly to one of us physicians
to determine what treatment is necessary.