This page is taken from our new book - A Patients Guide to Transplantation. It's easier to follow on paper, so you can print this page or better yet, join ATA and get your free copy!
Through scores of support group meetings and thousands of hours spent talking to transplant candidates and recipients, we have found the following are the questions most frequently asked by transplant recipients-to-be when they first learn of their need for an organ transplant. These are not all of the questions you will have – not by a long shot! But we hope that these questions (and answers) will help you understand more about the experience of transplantation and better prepare you for discussions with your transplant team.
The answers given are not meant to be medical advice nor to set expectations for your personal transplant experience or outcome. They are meant to portray a general patient’s perspective based on conversations with hundreds of transplant recipients.
Although transplant patients share many common bonds, transplantation is a very unique and individual experience that doesn’t lend itself well to generalizations. A lot of the answers you will see here begin with "it depends". That is because the answers do depend upon you, your health, your illness, the type of transplant you need, your transplant team and their practices, your attitude, your commitment, luck and many other variables. However, we do try and give you at least a sense of what you may expect as you live your own personal transplant experience.
And, most important of all, at any time, if there is something you don’t understand or if you need further clarification, consult your transplant team. They should be your first, best source for transplant information. In our experiences, we have found it most beneficial to prepare in advance for meetings with your team. You should plan to write down your questions before you meet with them. Plan to take notes and on their answers and ask for clarification if you’re not exactly sure you understand what they are saying. Also, consider taking your caregivers or support people with you when meeting with your transplant team. Many times your physical condition or state of mind will not allow for full understanding and appreciation of the advice and counsel of your team. You’ll find that having a friendly, familiar face in the room can go a long way towards a more productive and successful meeting.
OK, that said, here goes…
My doctors say I need a transplant. What are my options?
Organ transplantation is generally the treatment of last resort. Except for some kidney patients, it is not elective surgery.
Having said that, there are cases where a patient’s condition does improve enough so that a transplant is not necessary. In fact, improving your condition to the point where you don’t need a transplant will be the first goal of your medical team. But these cases are the exception, not the rule.
And treatments are being developed every day that
may provide you with an alternative to transplantation. But, in general, once
you have been told you need a transplant, it is usually the only treatment left.
So your options are limited.
Once a person learns they need a transplant, meets with their transplant team and is accepted as a candidate for organ transplantation, one of the first questions they ask is ‘what is my place on the list?’ Sometimes they even get an answer. But the reality is that there is no list – not until an organ becomes available. Here’s how it really works…
When your team decides you need a transplant, they register you with the United Network for Organ Sharing (UNOS). Among other things, your transplant team tells UNOS the type of organ you need, what size organ is required, your ABO blood type and your medical priority. UNOS then enters your patient information into a computer database containing profiles of all transplant candidates throughout the United States.
When a donor organ becomes available, it is first offered locally to patients listed with transplant centers in the area where the organ is recovered. For all organs except kidneys, UNOS searches their patient profiles and generates a list of patients in the local organ recovery area that match the recovered organ by ABO blood type and size. For kidneys, additional tissue typing is done that will affect who gets offered the organ. If there are no matching local patients that need the organ, it is next offered on a regional and finally on a national basis.* Patients on the UNOS generated list are ranked by priority and, within priority, by time since their registration on the UNOS database.
If you are the highest priority patient on the list generated for the available organ, your transplant team will be offered the organ. But, it’s not yours just yet. Many factors determine whether you will receive the organ. First, your transplant team and an operating room must be available for surgery. Then they must decide if you are ready (medically) for the transplant and if the organ offered is medically acceptable (disease and defect free). There may be other considerations as well. But, in general, if the organ is good and you and your team are ready, it’s time for your transplant!
*Note: This local, regional, national allocation system is under review at the time of this writing (September, 1998). It appears that the system will be modified to allocate organs on a "sickest patient first" basis. This will mean that, if the organ can be transported the required distance to the patient without damage to the organ and the "sickest" matching national patient is medically viable for transplant, the geographic boundaries now used would be eliminated as considerations.
What is my priority and how long will I wait for my transplant?
It depends. Patients are assigned a priority by their transplant team according to established, objective medical criteria. The more critical your need for transplant, the higher the priority that is assigned to you. Thus, in general, critically ill patients in the hospital intensive care unit have a higher priority than patients that are in the hospital, but not in the ICU. Patients that are well enough to be at home have the lowest priority.
The highest priority patients have the first chance at an organ if the blood type and size match. If there are two patients of equal priority that could use the same organ, the patient with the most time on the waiting list will receive the offer first. But, sometimes the highest priority patient may be too sick to undergo a transplant. In this case, the organ will be offered to the next patient in turn and so on until the organ is accepted.
The time you spend on the "waiting list" will depend on what part of the country you live in and where you are registered for your transplant. Some geographic areas have very high rates of donation and very little demand. In these areas, waiting times can be quite short. In other areas, where donor rates are lower or the waiting patient population is high, the waiting time for an organ can be significantly longer.
If you have the required financial resources and the ability to travel on short notice, it is possible to be registered at multiple centers for a transplant. This means that in addition to being listed at a center close to home, you could also choose to be listed at a distant center where the odds of getting an organ faster may be significantly better.*
*Note: However, under the proposed, "sickest first" system, since the organs will go to the sickest patients regardless of geographic location, there would be no advantage to this "multiple listing".
If I have a transplant, what are my chances for survival?
Transplantation works! Medically, it is no longer an experimental procedure. Your odds of survival will depend on your general health, your illness, your condition at time of transplant, the experience of your transplant team and many other factors, including luck. There is no easy way to answer this question.
One critical factor is the ability to get a matching organ that is suitable for transplant. As of this writing (September, 1998) there were over 60,000 persons on the national organ waiting list with a new name being added every 12 minutes. With an average of only 20,000 organs available each year for transplant, you can see that there is a tremendous shortage of organs. There are many dedicated organizations and individuals working tirelessly to address this critical problem, but the shortage continues with no end in sight.
Barring complications, assuming you are one of the lucky ones and you receive a matching organ, your chances of survival are quite good.
We’re reluctant to cite statistics because the data used to produce transplant statistics is generally old and outdated by the time it is published. But that said, we’ll give you the numbers anyway.
In general, the outlook for a successful transplant and subsequent survival is very good. Short-term (one year) survival rates of 95% or more have been reported for kidney and liver transplants, with hearts, lungs and intestines not far behind. Five-year survival data is also very encouraging. But you should note that the five-year survival data is only available on patients transplanted over five years ago. Transplant technology has improved so dramatically over the last five years, the current expectations for five-year survival are much better than the published data would indicate.
Where will my organ come from?
Your organ will most likely come from a donor who has died as a result of an accident in your local area and has been declared brain dead. Brain death occurs when there is no blood flow or oxygen to the brain and the brain has permanently ceased to function. Techniques are used to keep the donor’s organs viable until they can be recovered for donation, but, with brain death, the donor is legally dead and will not recover.
Typically, the organ will come from a donor of the same size and ABO blood type. In the case of kidneys, additional tissue matching is done. There is no matching of organs by race, age or sex. For kidneys, better matches are usually made within racial groups, which make cross-racial transplants not impossible, but less likely.
Although a local donor is most likely, depending on your circumstances, your organ may come from anywhere in the United States. However, a remote donor is less likely for hearts and lungs, which must be transplanted quickly and cannot spend a long time in transit. On the other hand, for kidneys, when a "perfect" match is made, regardless of their geographic location, the matching recipient will always receive the first offer for that organ.
You may also receive your organ from a living donor. Living donors are typically, but not necessarily, close relatives of the recipient. Since people are born with two kidneys and only need one to function, kidneys are the most frequently donated organ from a living donor. Typically, donations are made from sibling to sibling, sibling to parent or parent to sibling. However, donations between spouses and even friends have occurred. Living donors are now also being used for liver, lung, pancreas and intestine transplants.
How will they know the organ is a match for me?
As we said before, the organ will be matched to available patients by ABO blood type and size. In the case of kidneys, further matching criteria are used. Once the correct match has been determined, your transplant team will determine if the organ is healthy enough for it to be transplanted in you.
How long will I be in the hospital?
Again, it depends. We know of hospital stays as short as 3 days and others as long as 6 months. The typical patient in our experience can expect a post-transplant stay of 7-21 days if there are no complications.
What kind of tests will they do on me?
During your medical evaluation, you will see many doctors and they will test everything. You will most likely be surprised at just how many things there are to test and how many different ways they can be tested! And many of the tests will be repeated over and over as you wait for your transplant. The test results help the doctors determine your overall condition, the condition of your diseased organ and what priority to assign to you on the UNOS transplant database.
The tests may reveal some medical conditions, such as infections, that can temporarily disqualify you for transplant surgery. In these cases, your transplant team cannot accept an organ for you until your condition improves. Sometimes all the tests can be wearying, but they are all for your benefit. Transplantation is major surgery and all of your systems need to be in good working order for you to come through the transplant successfully.
Should my family donate blood for my surgery?
Usually, directed donation of blood is not advantageous for transplant patients. Whole blood cannot be preserved for any length of time. And since you never know when you may be called for the transplant, a directed donation is not practical. However, it is always a responsible, socially sound practice to be a regular blood donor.
But what about the quality of donated blood?
Some of you may be concerned about the quality of the blood you may receive – and with apparent good reason. For example, a hepatitis patient in need of a liver transplant may have contracted the disease that destroyed their liver through a contaminated transfusion. It would be easy to see why they would be hesitant to take another transfusion.
Today, however, in the United States, contaminated blood is not a major concern. Although, in the past, blood screening used to be less than adequate, blood supplies now are thoroughly tested to prevent disease transmission, including hepatitis and HIV, from donated blood.
How long will I be in surgery?
The surgery could last from 3 to 12 hours or more. It depends on the type of transplant, any complications encountered, the techniques used by your surgical team and other factors. Ask your transplant team for their estimate of your time in surgery.
How long does it take to recover from the surgery?
This depends on many factors – your general health, the type of transplant you receive, the amount of time you spend in the hospital before and after transplant, the length of your surgery and most importantly, your commitment to recovery. You may feel somewhat sluggish for the first few months or you may recover more rapidly. If you follow your transplant team’s directions, take your meds, watch your diet and exercise properly, expect to start feel pretty good within 2 or 3 months. But, remember you just had major surgery and it takes time to recover for even the most hardy of us. It can take months just to completely recover from the effects of the general anesthetic used during your surgery.
What happens if my body rejects the organ?
First of all, be prepared for this to occur. You, of course, should be concerned but you shouldn’t worry. Most transplant recipients experience some form of rejection. Rejection does not necessarily mean that you are losing your organ. Remember, your body treats the transplanted organ like a foreign invader and mobilizes your immune system to attack. Rejection means that your immune system is doing its job. This is why you must take immunosuppressant medications – to suppress your natural immune response.
The doctors will know if you are experiencing rejection from your regular biopsies or post-transplant blood tests. Episodes of rejection can occur at any time post transplant and it is not uncommon to have more than one rejection. Rejection most likely occurs during the period immediately after transplant, but may occur many years later for many reasons. It most certainly will happen if you don’t follow the medication routine prescribed by your transplant team. Rejection episodes are treated with medication. Depending on your individual circumstances, hospitalization may or may not be required.
In the most serious of cases, rejection can lead to the need for re-transplantation. This is not common, but does occur in some cases. But the good news is that the results with re-transplantation can be as good as with an original transplant.
How long will I live after the transplant?
How long will any of us live? But as far as the transplant goes, if all goes well and you make it through the first year, you should look forward to a normal life expectancy for someone your age. But you have to make sure you follow your transplant team’s advice and always, always take your medications. The number one reason for organ failure in transplant recipients is non-compliance, that is, failure of the recipients to properly take their medication. You don’t want to be included in that statistic.
Will my disease recur after my transplant?
Some diseases are actually "cured" by a transplant. For others, transplantation is a treatment and the underlying disease may recur. To find out the facts of your own situation, ask your transplant team.
What medications will I have to take after my transplant?
This will depend on your individual case. All transplant recipients are immediately placed on immunosuppressants. Typically, there will be many other medications prescribed too. The type of drugs you take and their dosage will be determined by your transplant team and carefully monitored.
Immediately post-transplant, the number and amount of medications you require will seem overwhelming. You’ll be taking many different drugs several times per day and changing their dosages on a regular basis. You’ll feel like you’ll never be able to keep up with the routine. But somehow you will manage. Over the ensuing months, your medications will be gradually reduced (and some will even be eliminated!) until after a year, you’ll be (pleasantly!) surprised at how little you still need. Although there are exceptions, you will probably have to take those that remain for the rest of your life.
Whatever you do, do not stop taking your medications or change your course of medication without consulting first with your transplant team. Failure to follow their orders could cause you to lose your new organ!
What are the side effects of the medications?
We hate to keep saying this, but it depends. Side effects vary by individual and depend on which medications you take and what dosages are prescribed. Common side effects associated with typical immunosuppressant medications include hair growth (great for guys if you’re thinning on top, but not so great for girls or kids – especially adolescents), hair loss, weight gain, and elevated blood pressure. Many other side effects are possible and will vary from person to person. There may be side effects from other drugs prescribed for you as well.
The good news is that many of the side effects will lessen or go away completely as your system gets used to the drugs and the dosages are tapered over time. If you have any questions about your medications or experience any serious or prolonged side effects, see your transplant team immediately.
And you must always be aware of potential interactions between drugs. Even non-prescription or over-the-counter drugs can adversely interact with the prescribed medications you are taking. It is very important to make sure your transplant team is aware of all medications you are taking at all times. And never start any new medications without consulting your team or a physician familiar with your medical history.
How much do the medications cost?
Big bucks. Immunosuppressant drugs are very expensive. Some of the other drugs prescribed can be expensive too. It is not uncommon for a transplant patient to spend $10-12 thousand a year for medications. Some spend much more. And the costs during the first year after transplant can be significantly higher. Your insurance may cover all or only a portion of their costs. However, assistance may be available for those with financial need. Talk to your transplant team, your hospital social worker and your insurance company.
Will I ever get my energy back?
Yes. We have seen estimates that indicate that confinement to a hospital bed can cause a person to lose up to seven percent of their strength each day. If you spend any time at all in the hospital, you can expect to feel some weakness. Additionally, the anesthetic used during your surgery will also cause you to feel sluggish until it works its way out of your system.
However, your energy will come back - and it comes back faster if you exercise. Many transplant programs will prescribe a program of physical rehabilitation for you as part of your recovery. Talk to your transplant team about their practices and expectations for you.
If your rehabilitation program is left up to you, take it (literally) one step at a time. Work at it, but don’t do too much, too fast. And don’t get discouraged if you aren’t progressing as fast as you would like. Walking is an excellent way to begin your road back to fitness.
When can I return to work?
Again, it depends. Many transplant patients spend some time on disability, before or after transplant or both. However, after a period of recovery, most should expect to resume a normal life.
If you are employed at the time of your transplant and you want to continue working after transplant, keep your job if you can. Post-transplant employment is not always easy to find because of public perceptions and insurance considerations. Although public events like the Transplant Games help erase misconceptions about the capabilities of transplant recipients, many people expect transplant recipients to be permanently disabled or somehow limited in their activities. And, due to the high costs associated with transplantation, both for ongoing care and for required medications, employers may be reluctant to add transplant recipients to their insurance plans.
If all goes well, you should be able to comfortably return to work within 6 months. Quite possibly, you may return sooner, depending on your recovery and your desire.
You should also be aware that as a transplant recipient, for purposes of employment you are covered under the Americans with Disabilities Act and entitled to certain protections under the law. These protections can extend to members of your family as well.
What restrictions will I have after my transplant?
Most transplant recipients have no limiting restrictions, but you should always be careful. Remember that, post-transplant, you take medications to suppress your immune system. Infections and viruses that normal people fight off with no lasting effects, can put you into rejection and into the hospital. So use your common sense.
Particularly for the first year, when your immunosuppressant dosages are the highest, try to avoid sick people and crowds. Limit your contact with pets as many of them can carry disease. Maintain sanitary conditions at home. Wash your hands frequently. After a year or so, your immune system will come back to a level where these things won’t be as much of a concern. But for the first year, be careful.
Will I have to change my diet?
This depends on your current diet and the nature of your illness. Typically, a normal healthy diet is all that is required post-transplant. Depending on your health, your doctor may impose some restrictions.
During your recovery, it is a good idea to talk to your hospital nutritionist and develop a plan for your personal diet.
How often will I have to return to the hospital?
With a little bit of luck, maybe never as an inpatient. But get used to the outpatient clinic. You’ll be a familiar face there for a while.
For the first several weeks after your transplant, you will need blood tests quite frequently until you are stabilized on your medications. These tests are usually performed on an outpatient basis at your clinic. If all goes well, after a few weeks, the frequency of blood tests will begin to decrease until you find yourself only being tested every few months. You will always come in at least once a year.
In addition, some transplant programs require regular biopsies to monitor your transplant. Their frequency will depend upon your transplant team and their protocols. These biopsies are normally also performed on an outpatient basis.
Also, whenever your medication is changed, your transplant team will want you to have regular blood tests until they are happy that your new level of medication is appropriate.
What about physical activity after the transplant?
Once your surgery is fully healed, there should be no restrictions. You should be able to return to the level of physical activity you enjoyed before you became ill. In fact, with the replacement of their diseased organ, many transplant recipients report a renewed enthusiasm for physical activity. Many go as far as to register, train and compete in the Transplant Games – an Olympic-style athletic competition open to transplant recipients.
What about sexual activity?
One should expect to return to normal sexual activity following a transplant. However, due to the side effects of certain medications, some male recipients may experience periods of impotence. The good news is that there are alternative medications and treatments available to treat this condition. If you are experiencing problems, do not hesitate to talk to your transplant team.
Can I become pregnant after my transplant?
Only if you are female, so you guys can relax. Women who receive transplants can conceive and give birth normally. However, some studies indicate there is a higher incidence of premature births in babies whose mothers are transplant recipients. For that reason, expectant mothers should be monitored carefully during pregnancy. Mothers are also advised against breast feeding due to the possibility of immunosuppressants being passed to the infant through the milk. If you decide you want to become pregnant, talk it over with your transplant team.
Should I go to a support group?
Although we know that support groups aren’t for everyone, the short answer is yes. At least try a few meetings. You may be surprised at how much you learn. And there’s something very comforting about listening to someone else report the same problem you’ve been living with for several months but kept to yourself. You’ll also find that in most support groups, you tend to get out what you put in. So don’t be shy. And if the first group doesn’t work, try another one.
Also, support groups aren’t just for patients. Often, caregivers and families need this type of contact more than the patients do.
Where can I learn more?
The first and foremost source of information should always be your transplant team. Certainly, they should be the only source for answers to medical questions.
Other patients at your transplant center, including your support group, can also be good sources for information. But make sure you keep in mind that transplantation is a very individual experience and what works for someone else may not necessarily work for you. And, as well-meaning as they may be, patients aren’t doctors.
Books may be useful, but check the publication date before you start reading. Transplantation is progressing so rapidly that most books are outdated by the time they are published. And the Internet can be filled with much valuable information. But the Internet can also be filled with misinformation so be careful how you use the information you find there.
Finally, you can always call us at The American Transplant Association. We hope that you will consider us to be a valuable source for education and services during your transplant experience.