Hello. Welcome to MedStar Georgetown Transplant Institute. We're excited
you chose our transplant center. Let's review some commonly asked
questions and topics involved with being on the transplant waitlist.
The transplant waitlist is a national list of people who need to receive an organ operated by
the United Network of Organ Sharing or UNOS. UNOS is a national organization for organ allocation.
Wait time for a donor organ is dependent upon several factors, these include your blood type
and tissue matching. Expected patient waiting times vary depending upon your location within the U.S.,
as well as the local organ procurement organization or OPO. For AB blood type,
the wait time is typically less than two years, blood type A about three to five years, and for
other blood types O and B, typically five to seven years. If you have a living donor that is approved,
the transplant can be scheduled within a few months. So, we encourage all our
patients to look for a living donor to greatly shorten their wait time.
Wait time may change, so it's very important to look for a living donor. It is important
to know your wait time officially starts the day you started dialysis. So if you've been on
dialysis for three years when you get listed, you start with three years of wait time right away.
While we may only be in touch with you every 6 to 12 months,
you should always feel free to contact your coordinator while on the waitlist at MGTI at
202-444-3700 and know we will always be in touch with you. We encourage you to
save your coordinator's number or the MGTI main clinic number into your cell phone.
We need to know about any change in your contact information including changes to your
dialysis center, new nephrologist or primary care provider, and any change in insurance information.
We would like to hear about any and all significant changes to your health condition
including medications and any surgeries. When in doubt, call or email your coordinator at MGTI.
Again, the number is 202-444-3700. The MGTI team will contact your primary nephrologist
if there is any change in your health or status.
Testing you will need while on the waitlist includes a monthly blood test which is one
red top tube for PRA testing which is done to study your immune system. We need a sample of
blood sent to our lab every month you are on the list. If we do not have blood from you, we cannot
test the kidneys, and you will not be offered a transplant. If you are on dialysis, your monthly
PRA kits are done at your dialysis center. Notify your coordinator if your dialysis center changes.
Non-dialysis patients can choose to bring their PRA kit to a non-MedStar lab to get this test done.
Alternatively, a non-dialysis patient can choose to come to either MedStar Georgetown University
Hospital or Washington Hospital Center to have their monthly PRA lab drawn. They must bring their
kit and lab form generated by their transplant coordinator. Patients who perform home dialysis
can take their kit to the dialysis center when they have their regular in-person visit.
This is usually completed monthly. If you have a question about PRA testing, don't hesitate to ask
your transplant coordinator. Other testing includes annual screening for hepatitis and
other viruses as part of your annual lab work. You also get an annual chest X-ray
and EKG. Also repeat heart testing which includes a stress test and an echocardiogram
every one to two years. You also must keep current with standard screening testing
including, as appropriate, PAP smears, mammograms, colonoscopy, and prostate specific antigen testing
or PSA. This will be explained specifically during your waitlist visit.
You should stop using all tobacco products, cigarettes, cigars, pipes, and dip. Some studies
have found that people who smoke are eight times more likely to lose a
kidney than people who do not smoke. If you are a diabetic, it's very important to have
good control of your blood sugars prior to transplant, Keep your weight well controlled
because risks increase for patients who are overweight. It's important to stay active and
exercise regularly, so you are able to be strong in preparation for your transplant surgery.
Patients can receive a kidney either from a living donor or a deceased donor.
A living donor is superior to a deceased donor kidney in several ways.
Most living donor kidneys function immediately and last an average of 15 to 20 years, and there
is much less wait time for a transplant. We want recipients to always think of any individual
that is medically and psychologically able to undergo the donor operation,
and the MGTI team will find a kidney for them, either the donor they bring forward or with
our expansive and successful PKE program. Seventy percent of D.C.'s donor kidneys function immediately
for an average of 10 to 12 years but require longer wait times on the list. For diabetics,
there is an option of pancreas transplant. A few requirements are age, BMI, and health status.
This first step to being considered as a living donor
is for the donor to complete the donor questionnaire at MedStarGeorgetown.org/LivingKidneyDonor
After registration or the questionnaire is completed, someone from MGTI
will contact the donor directly. During your waitlist update visit, you'll meet the team
which includes your RN coordinator, financial coordinator, social worker, provider, and dietitian.
Number one is testing. Let your coordinator know once you've booked your tests, and send
them results, The goal is to have the order testing completed within three
months of your waitlist visit. You are your best advocate, and the work you put
into maintaining up-to-date testing helps you to stay active and cleared on the list.
You can expect to be seen every year, or twice a year, if you're older than 70.
We encourage all patients to enroll in the MyMedStar patient portal. This is a free, secure,
and convenient patient portal where you can keep track of all of your health information
24/7. With MyMedStar, you can view and manage appointments, see test results, renew prescriptions,
access your health records, and most importantly communicate with your provider. It's easy to enroll.
You can go directly to MyMedStar.org/Enroll, You only need your name,
date of birth, and your MedStar Health patient ID. Your unique patient ID can be found on
the first page of your visit or discharge summary. If you don't have your patient ID,
ask a MedStar Health associate or complete the secure request form at MyMedStar.org/Enroll.
Due to the possibly extended wait time for an organ, it is important that you keep in touch
with your coordinator and keep them informed of any changes in your name, address, phone number,
emergency contacts, nephrologist, or dialysis, health such as ER visits, hospital admissions, or
medication changes, or if you're going to travel more than three hours outside of the D.C. area.
Lack of communication with your coordinator or any member of our transplant team, may lead
to changing your status to inactive or removal from the waitlist. It is your responsibility to
keep your transplant coordinator informed and communicate with us while waiting for an organ.
When you are contacted for an organ offer by the on-call coordinator, please listen to what
our team asks for you to do. You may be asked to get labs, come into the hospital, or simply
wait for the next phone call. Please remember, if we can't reach you, we can't offer you an organ.
It's also important to remember a potential transplant may be cancelled immediately
prior to surgery if a donor organ has irregularities that makes it unfit
for you to receive. Some final diagnostic testing is done at the time of organ donation. All of
these details should be explained to you by the on-call coordinator if this situation occurs.
Active status means that you are eligible to receive organ offers. Inactive status means you
are ineligible to receive organ offers, but you are still gaining time on the waitlist.
There are many reasons for being inactive. Some examples are change or loss of insurance,
change in medical status, for example, if you are temporarily too sick for surgery, loss of your
support person after surgery, or not being able to contact you while you are on the waitlist. If
you find yourself placed in an inactive status, please speak with your transplant coordinator.
After you have transplant surgery, you must take immunosuppression medications.
These medicines allow your body not to reject or fight the new organ we have placed inside of you.
After your transplant surgery, you will be given information about diet and exercise,
as well as dealing with intimacy, health maintenance, and emotions. It is important to follow
guidelines to keep you healthy and safe after transplant. This includes talking to your support
person that will help you recover at home. It is important to note that after transplant, you will
have an extensive follow-up with the team twice weekly visits and labs drawn for about one month.
Please be prepared to come into the clinic and lab frequently and accept that you may have some
changes to your schedule depending on how you are doing after surgery. We are a team, and you
are the most important player. Please keep in regular contact with your waitlist coordinator.
We want you to be successful on your transplant journey. It is very important that your PRA kits
are sent in on time. If you are not receiving kits, please notify your coordinator as soon as possible.
We encourage you to save your coordinator's number or the main clinic for MGTI to your cell phone.
Thank you for choosing MedStar Georgetown Transplant Institute.
We look forward to working with you for a successful transplant.