The Transplant Experience

The staff at the Johns Hopkins Comprehensive Transplant Center will be with you every step of the way, telling you what to expect next, and how to prepare for your experience.

As you come into the transplant program at Johns Hopkins, you probably have many questions: How long before I can have a transplant? What kind of tests will you run on me? Where can I find support during this time?


Before Your Transplant

There are several steps and considerations to make before your transplant:

Referrals

There are two ways to be referred to the Johns Hopkins Comprehensive Transplant Center - physician driven referral or self referral. Your physician specialist may refer you directly to the transplant program. We ask that your specialist forward your medical records including demographics and insurance information. Once this information is reviewed a member of the transplant team will contact you regarding appointment scheduling.

The second way to come to the Comprehensive Transplant Center is to self-refer. Self-refer means that you call the transplant program directly and ask us to send you the referral information packet. This packet contains the candidate form and informed consent document. It is important to return the candidate form, along with photocopies of your insurance cards, to the transplant center within two weeks. The informed consent document is provided for your information and will be discussed in great length at your evaluation appointment.

Kidney Transplant Referral Frequently Asked Questions

Lung Transplant Referral Frequently Asked Questions

Your Transplant Evaluation

All patients will receive an initial evaluation by members of the transplant team. Some patients will move immediately toward being listed for transplantation, while others will be able to manage their condition for months or years before transplantation becomes necessary. Only after the evaluation is complete can the transplant team tell if a patient is eligible for a transplant.

Prior to your first appointment, you'll be asked for provide a list of all prescription, over-the-counter and herbal medications, including name, dosage and frequency of use. You'll also be asked for a copy of your medical history and any recent test results. If you are unable to send the requested information ahead of time, please bring this with you the day of the appointment.

Once all tests are completed, the transplant team will review your case and determine your transplant eligibility.

Evaluation Tests

Patients may require additional medical testing, which may result in follow-up visits to the hospital. Some candidates may be able to have these test performed in their local area. Patients can take an active role in moving the evaluation testing along by following through on completing the tests that are needed.

Depending on a patient’s situation and type of organ transplant, the following tests may or may not be required:

Organ Donors

There are two types of organ donors, deceased or living. Deceased donor organs are obtained through procurement services offered by the Living Legacy Foundation of Maryland (LLF), a non-profit organ and tissue donation program.

The Johns Hopkins Comprehensive Transplant Center encourages live organ donation for our kidney transplant patients. We also offer a live donor program for liver transplant patients as well.

#TomorrowsDiscoveries: Using Technology to find Organ Donors– Andrew Cameron, M.D., Ph.D.

Andrew Cameron, a liver transplant surgeon, recognizes that many people wait on the transplant list. He and his team worked with Facebook to allow people to show their friends they are registered organ donors. The initiative tremendously increased donor registration rates. Dr. Cameron’s team is now working on an app to help patients identify a living donor.

Benefits of Living Donation

There are many benefits to having a living donor. Often, a living donor is a relative. Such genetic matches lower the risk of organ, and genetically matched organs actually begin to function sooner than non-genetically matched organs.

Having a living donor also shortens the amount of time a patient spends on the waiting list. Furthermore, living donation surgeries can be scheduled, allowing for the patient and the donor to find a time that works best (summer vacation, winter break, etc.)

Find out more about live organ donation.

The Waiting List

The United Network of Organ Sharing (UNOS) manages the waiting list for organ donation. UNOS is a federally-contracted, non-profit organization that matches donors to recipients and ensures that organ allocation policies are followed.

Thousands of people are currently on the organ waiting list. A person’s position on the list depends on a number of factors, based on the needed organ. The transplant team at Johns Hopkins will help you understand the waiting list in relation to your transplant.

Receiving the Call

Unless your transplant is scheduled, when a donor organ becomes available, you will receive a phone call. This can occur at any time. When you get the phone call, you should proceed to the designated location to prepare for surgery.

It is important to know that false alarms do occur. Due to time constraints, an organ may not be fully evaluated before you come to the hospital. When all the information is available, your surgeons will know whether or not it is the right organ for you. While false alarms can be frustrating for transplant patients and their families, it helps to ensure that the best organ is found.


During Your Transplant

When you arrive at the hospital, your blood will be drawn and you’ll receive a physical exam. You may need an X-ray or an EKG. You may be asked to scrub yourself clean. Finally, you will be anesthetized for the surgery.


After Your Transplant

Recovery and rehabilitation should be your main concerns after your transplant. Your transplant team, including surgeons, specialists, nurses, dieticians, and social workers will follow you throughout your recovery. Each patient’s path to recovery is different, and it can be months before a patient is fully healed from the surgery.

Following your recovery plan is essential for healing. After your surgery, you’ll spend several days in the Surgical Intensive Care Unit (SICU). You will have many monitors attached to you to keep track of your condition:

  • Nasogastric Tube (NG Tube) – This tube is placed through your nose and down into your stomach to keep your stomach clear. It will be removed when your bowel function returns and you are able to eat. It may make your nose and throat sore.
  • Endotracheal Tube (breathing tube) – This tube will remain in place until you are awake enough to breathe on your own. It is usually in place for one to two days after surgery. While this is in, you will not be able to talk. Your family may want to bring pen and paper so that you can express yourself. You may also want to establish simple movements, such as blinking, for yes or no questions.
  • Urinary Catheter (Foley) – This tube helps empty your bladder. It is removed once you are more awake.
  • Central IV Lines – These lines help provide fluids, nutrition and medication. They are removed when you can eat and drink. You and your caregiver will be instructed in how to manage your care during your recovery period. This includes medication information and daily living instructions.

After your transplant, you will have regular appointments in an outpatient clinic. As you improve, these appointments will be less frequent. Arrangements for blood tests and medication management can be made through your primary care provider, or through your local Johns Hopkins Community Physician.

The United Network for Organ Sharing requires that hospitals follow-up with patients for at least two years after a transplant. Often, the relationships developed between our physicians and patients last decades longer.