| In the past
few years, researchers have begun to investigate the possible use of
stem cell transplants to treat auto immune disorders such as Crohn's
disease, lupus, and multiple sclerosis. In the hopes of finding an
answer to my medical woes, I traveled to Northwestern University in
June, 2002. There, doctors have pioneered an experimental study to see
how stem cell transplants help such auto immune disorders.
Although eventually this opportunity did not work out for me, I recently
had become
increasingly sick and in need of a long term solution, rather than the medicines
I was on. After being back on intravenous feedings each night
because I could no longer eat without bleeding, my parents and I
traveled to
Duke
University Medical Center (DUMC), where I had a stem cell transplant
for Crohn's disease. Below, you can find
information about this, and other such stem cell transplants.
In basic terms, what is a stem cell
transplant?
The stem cells corresponding to each part of the body
provide instructions for how to grow that part. In my particular kind of
stem cell transplant, a special catheter was placed in a large vein
in my neck to draw blood. The blood drawn was put through a
centrifuge, the stem cells separated out, and the rest of the blood
cells returned to my body. (Another method to harvest stem cells
is through the bone marrow. This is where, in the end, mine came
from. After taking the cells from my blood did not work, an
attempt was made at harvesting them from my bone marrow. This, in
turn, gave a bigger yield, and we were able to proceed.) My immune system
was then destroyed by
high-dose chemotherapy and my stem cells reintroduced to my body in the
hopes that they will multiply and build a healthy immune system. Most
stem cell transplants of this type are autologous, meaning that the
patient is both the donor and the recipient. Only cells are
transplanted; the procedure does not involve the replacement of any
organs or other body parts.
Why does a stem cell transplant help Crohn's
disease?
Crohn's disease is believed to be an auto-immune
disorder, meaning that the body's immune system has been improperly told
to do something. In the case of Crohn's, it has been told to constantly
attack itself. In addition to Crohn's being a problem in the digestive
tract, many patients seem to be more reactive to antigens (proteins
found in every substance) in the body than other people without Crohn's.
So, by taking out stem cells, killing the rest of the immune system with
chemotherapy, and then replacing those same cells, doctors believe the
patient's immune system will "regrow" and perform normally.
However, while stem cell transplants have been used in other diseases
such as cancers for years, use for immune disorders is new, and
therefore experimental. It is a drastic approach that is currently only
being done on patients with severe cases. A little over a dozen Crohn's
patients in the United States have used this method. Most, if not all, are
have seen a sharp decrease in symptoms or are even in remission now.
When and where do you have the transplant?
My transplant was performed by a medical team at
Duke University Medical Center. This team included hematology and
oncology specialists, gastroenterology specialists, and other support
staff. My mother and I traveled to Duke on April 2, 2005, and stayed
there until July 30, 2005. My family and friends visited along the
way!How long does the transplant take?
As with any long term medical care plan, the entire process takes
multiple years per patient as the doctors
at Duke University follow me to watch my progress. The transplant
protocol itself takes about three and a half to four months, and has
about a one year recovery time. The actual transplantation of stem
cells only take a few hours -- it is similar to a transfusion of blood,
and is given into a special catheter previously implanted in the
patient's chest that goes directly to the heart. During the year following the
transplant, patients will
be more tired than normal due to the side effects of the chemotherapy
and the process of building back their immune system. Remember, the
chemotherapy kills the whole system. This means patients may have to go
through such things as common colds again and may sometimes have most of vaccines done
completely over again.
This, however, is not always the case.Is the transplant painless? What about other risks and/or
side effects?
The transplant of the stem cells back into the patient is in it of itself painless, however injections of medicine, the
installation of IV sites and devices, and the like does come with pain. Side effects are mostly related to the drugs themselves (such
as the chemotherapy and antibiotics) and include the more common things
such as headaches, diarrhea, bone and muscle pain, and swelling at injection sites. High dose
chemotherapy almost always causes nausea and loss of appetite as well as
hair loss. Fever is common and is controlled with Tylenol or
antibiotics. Once the stem cells are removed from the body, the most
common complaint is that of low calcium, which can be seen in finger and
lip numbness and is dealt with by chewing on a calcium supplement such
as Tums. In addition, wiping out the immune system puts the patient at
an increased risk of infection. Because of this, patients are
hospitalized in a special room on a special floor which has a positive
air pressure system with high efficiency particulate air (HEPA)
filtration, which helps to avoid contamination from the outside.
Patients are not allowed things such as fast food and raw vegetables for
risk that they might be contaminated as well. The risk of death for an
autologous is
extremely low.
How many people have had a stem cell transplant?
Although about 2.5 million people worldwide have had stem cell
transplants for various diseases (usually certain cancers), only just
over a dozen people have had stem cell transplants to treat Crohn's
disease. I was the youngest patient in the United States -- and the
first at Duke University -- to undergo the procedure as a treatment for
Crohn's disease.What is the success rate for Crohn's disease?
While no one can guarantee the effectiveness of the transplant, most, if
not all, of
the Crohn's patients that have completed therapy so far have gone into
remission, meaning they have not seen most or any symptoms of Crohn's
since after the transplant was completed. As for cancer patients who
have had transplants, approximately 87% have been successful.
Isn't there a big controversy surrounding stem cell research?
The controversy surrounding stem cell research is related to concerns
about using stem cells to clone human and animal embryos. This type of
transplant I am having is an autologous one, meaning I will be supplying the necessary cells from
my own body.
What type of procedure is this?
A stem cell transplant is, in fact, not a type of surgery. Many people
think that because they hear "transplant", it involves an operation of
some sort. That's not necessarily true. The patient may have to have a
port, a device used to infuse medicine and blood products, placed
surgically, but that's most likely the only procedure classified as
surgery that this will involve. The transplant part means that the stem
cells from the patient's blood will be transferred, not something like
an organ (as in a kidney transplant, which does involve surgery).
Does your insurance cover the stem cell transplant?
Yes and no. The transplant itself can cost as much as $250,000.
This does not include travel, lodging, and living expenses for the four months myself and family members
stayed near the hospital, or
the return trips I will need to make for checkups over the coming years.
My insurance company recognizes the potential for a transplant to
benefit me while at the same time reducing the company's long-term
costs. Therefore, some coverage may be provided, but at this time, the
total costs associated with this procedure are not definitively known,
nor is the percentage of costs that may ultimately be covered by
insurance. We do know however, that only medical portions will be
covered, which does not include travel, lodging, and other living
expenses.
What is the Jordan Fifer Fund? How can I donate?
Contributions to the
Jordan Fifer
Fund will be used to defray the total cost of receiving medical
care. These costs include the stem cell transplant itself,
medication, copays and deductibles, counseling, doctor's visits,
multiple trips for family members and myself between Roanoke and
treatment sites over the next several years, and out-of-town lodging and
living expenses.
Contributions to the Jordan Fifer Fund may also help others with
severe Crohn's disease. By undergoing this treatment, my doctors
and I will be learning about a method which may potentially be used in
the future to help, and possibly even cure, severe IBD patients.
My family and I appreciate any donations that you feel comfortable
making. Please
click here
for more information.
Links
The Jordan
Fifer Fund - Donate to the Jordan Fifer Fund
The Heroes List -
A list of organizations/companies that have helped my family and
me.
Media Page - News articles from around the
world about SCT's for Crohn's disease.
CCFA
- Crohn's and Colitis Foundation of America
Duke University - Duke University Medical Center Pediatric
Bone Marrow/Stem Cell Unit
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