What is UNOS?
What happens if I have a change of insurance or funding?
How long does it take to complete the transplant evaluation?
Does all the evaluation have to be done here?
Why do I have to have social support?
Can I be on the list at more than one transplant center?
Do I have to see the transplant center doctors after I am listed or can I follow with my own doctors?
How do I prepare for my transplant surgery?
Can I give blood ahead of transplant?
How long do I have to wait for a transplant after I am listed?
How often and what type of follow-up is done while on waiting list?
Is living donor an option and who can donate?
Does insurance the cover the cost of living donor?
How much of a living donor’s organ is taken?
How much does a transplant cost?
How quickly do I need to get here when an organ is available?
How long does the surgery take?
What is the recovery time after transplant?
What will I be able to do after transplant?
What medications will I take after transplant?
Can I take Tylenol? My doctor told me to avoid it.
Is there anything that I can take instead of Lactulose?
Is Hepatitis C contagious to my family and friends?
UNOS is the United Network for Organ Sharing. The federal government, through the Department of Health and Human Services, has contacted UNOS to oversee organ allocation in the United States. UNOS establishes the rules governing organ allocation and they make sure organs are distributed in the fairest manner possible.
What happens if I have a change of insurance or funding?
Please contact the Transplant center as soon as possible to let them know of the change.
How long does it take to complete the transplant evaluation?
The process entails about 3 full days of testing. Sometimes this needs to be spread out over a few days or weeks depending upon you availability and scheduling. If consults are recommended due to abnormal testing it could take longer.
Does all the evaluation have to be done here?
This depends on your insurance and your availability. Some tests need to be performed here such as blood work and a CT scan. It is sometimes possible to have other tests performed closer to your home. However, this may potentially delay getting you on the waiting list for a transplant.
Why do I have to have social support?
Patients with strong social support have a better chance at long term success after transplant. It is very important to have people around who can assist you through the entire journey Transplant is more than just surgery; it is a lifestyle change that will require the support of your family, friends, and community to maximize your return to a normal healthy lifestyle.
Can I be on the list at more than one transplant center?
Yes, this is called “multiple listing”. It presently permits patients to be considered for organs that become available in other areas. Each center has its own criteria for which it accepts as a candidate and reserves the right to decline patients that are listed at other centers. Patients who wish to be listed at more than one center should inform centers they contact of their plan.
Do I have to see the transplant center doctors after I am listed or can I follow with my own doctors?
We consider your primary physician part of our transplant team, so it is important you continue to see your doctor throughout the transplant process, including after you are listed. The Transplant Center doctors will need to see you periodically.
How do I prepare for my transplant surgery?
Transplantation is highly specialized surgery so you are not expected to know or understand everything about the process. Do not be afraid to ask questions. Knowing as much about the transplant journey as possible will be key to you becoming an active member of the team. Shortly after you are listed for transplant you will have the opportunity to attend a pre-transplant class that will answer many of your questions about the transplant process.
Maintaining a healthy lifestyle, including eating a healthy diet, staying active, and following your doctor’s instructions is key to be in the best possible condition for surgery.
Can I give blood ahead of transplant?
Yes, if your transplant will happen in the next several months. However, many patients with advanced liver disease do not have a high enough blood count to allow them to do this.
For a lung transplant, it is not encouraged due to the fact of not being able to predict when your transplant will occur.
The average amount of blood used during a transplant is frequently more than most patients can donate.
How long do I have to wait for a transplant after I am listed?
Liver: Patients are transplanted according to their Model of End-stage Liver Disease (MELD) score. Your MELD score is calculated using your lab test (bilrubin, INR, creatinine). The range is from 6 (less ill) to 40 (gravely ill). Patients with the highest scores are transplanted first. Most transplants in our program occur in patients with MELD score above 20. A MELD calculator can be found at www.unos.org.
Lung: The Lung allocation system helps determine the order that lung offers are made to lung transplant candidates 12 years or older by assigning each candidate a Lung Allocation Score (LAS). The LAS is an important factor in determining priority for receiving a lung transplant when a donor lung becomes available. The score reflects the seriousness of each candidate’s medical status before transplant and the likelihood of successful transplant.
Kidney: The wait time for a kidney is determined by the amount of time spent on the list, age of potential organ candidate, tissue match between donor and candidate, blood type, and blood antibodies.
How often and what type of follow-up is done while on waiting list?
If you are doing well you may be seen only once or twice a year if your primary physician is closer to home. If you are having more problems you may need to be seen by us and/or your primary physician more often.
Is living donor an option and who can donate?
Living donation is an option for some patients. In most cases, donors are either family members or close friends without major medical problems. We have information regarding this and you should ask your coordinator and surgeon about this option.
Does insurance the cover the cost of living donor?
Many insurances cover the costs associated with living donation. One exception is Medicaid that does not cover this procedure.
How much of a living donor’s organ is taken?
Liver: the healthy liver grows back like the skin. For adults, the right half of the liver is taken from the donor (about 55-60% of the total liver). The donated right part grows in the recipient and the remaining left half grows back in the donor.
Kidney: the whole kidney is removed either laparoscopically or through traditional open surgery. Laparoscopic surgery is one small incision below the navel, and 4 small holes which they insert an instrument and has a faster recovery. The open surgery requires an incision about 10 inches long.
How much does a transplant cost?
Transplantation is a complex process involving multidisciplinary team of highly trained professionals who are available to you 24-hours a day, 365-days a year. As a result, the transplant journey is expensive. Our multidisciplinary teams includes financial coordinators and social workers who can help you identify the resources necessary to cover the cost of transplant and to understand your insurance coverage and the financial burden you can expect during this process.
You must actively engage with your health insurance representative to identify your specific coverage as it relates to transplant care.
How quickly do I need to get here when an organ is available?
We try to give you as much notice as we can. As soon as you receive the phone call about the transplant you need to come to the hospital without delay, but you generally have several hours.
We encourage you to have all of your personal affairs in order and have your pre- transplant checklist (provided at the pre-transplant class) completed to make this part of the transplant process as quick and easy as possible.
How long does the surgery take?
On average 3-4 hours. For lung recipients on average 4 – 6 hours.
What is the recovery time after transplant?
The majority of patients leave the hospital 1-2 weeks after transplant. Some patients who are deconditioned prior to transplant may need to go to a rehabilitation hospital before going home.
What will I be able to do after transplant?
Once you are fully recover, typically 3-6 months after transplant, there are virtually no limitations on what you can do.
What medications will I take after transplant?
You will be on medications to prevent your immune system from attacking your transplanted organ, medications to prevent infections and other medications to promote healing and protect you from potential side effects from your anti- rejection regimen. You and your caregiver will be taught about your medications before going home and you will be given a written personalized medication plan to follow after discharge and a 30-day supply of your transplant medications.
Can I take Tylenol? My doctor told me to avoid it.
For patients with end-stage liver disease, avoiding anything toxic to the liver, e.g. certain medications like Tylenol and alcohol is recommended. Tylenol is dangerous to anybody when take in large amounts. You can safely take up to 3 grams (2 extra strength Tylenol 3 times a day) in a 24 hour period.
Is there anything that I can take instead of Lactulose?
There is no good substitute for lactulose. Taken correctly, this medication is highly effective at treating hepatic confusion and increase ammonia levels. We often use a second medication (neomycin, metronidazole, or xifaxin) to decrease the amount of lactulose needed.
Is Hepatitis C contagious to my family and friends?
Hepatitis C is transmitted primarily by blood and therefore sharing of razors and tooth brushes should be avoided.
If Hepatitis C infects the liver, does that mean cirrhosis will develop again? Approximately 25% of patients will develop cirrhosis again within about 5 years and 50 % will have cirrhosis by 12 years. Many patients do well with cirrhosis for many years. We follow lab and liver biopsy results to determine whether treatment of Hepatitis C post transplant is a good idea for a particular patient.
