Registering, The Stressful Wait, Preparation

There are five phases to the heart transplant process. Each phase is described below.

Pre-­transplant Recipient Evaluation and Preparation

Although heart transplants are an established treatment for end stage heart failure, it is not suitable for everyone, so every potential heart transplant patient must be carefully assessed by the heart transplant team. While there are many people with end-stage heart disease with inadequate function of the heart, not all qualify for a heart transplant.

During the assessment you will have several tests and be interviewed by various team members to determine whether transplantation is the best treatment option for you. They will also look into whether you are in a condition to undergo the transplant. All the other important organs in the body must be in pretty good shape. Transplants cannot be performed in patients with active infection, cancer, or bad diabetes mellitus; patients who smoke or abuse alcohol are also not good candidates. It’s not easy to be a transplant recipient. These patients need to change their lifestyle and take numerous medications.

The transplant team will also try and identify social and behavioral factors that could interfere with recovery, compliance with medications, and lifestyle changes required after transplantation.

Once recipient evaluation is completed, and the patient is found medically fit for transplant and ready to opt for it, the prescribed forms have to be completed and submitted through the hospital to the state-wide appropriate authority to register the patient’s name on the waiting list for a deceased donor transplant. After listing, patients should undergo periodic testing and review with the transplant team, and inform them of any significant changes in the patient’s medical condition. When a potential deceased donor heart is available, patients are alerted immediately and called to the hospital.

This process however is streamlined only in a few states such as Tamil Nadu, Karnataka, and Maharashtra, and even there the wait could be long.

Organ Donors – Heart Transplant & Organ Donation

Donor hearts usually come from people who have injured their brain in an accident or who have had a major stroke. These patients are always on life-support machines in an intensive care unit and undergo a series of tests to see if their brain is still functioning. If there is no function of the brain, it is called “brain death”. This means that although the heart is still beating with the help of drugs and machines, there is no chance that they will wake up. If the machines and drugs are stopped the heart would stop beating. This is quite different from a “coma” where a patient can wake up.

When someone is pronounced “brain dead”, the family of the person is approached to give their permission. When permission is obtained, the process of organ donation starts.

Heart transplants are done soon after brain death of the donor is determined. Machines keep the heart and other organs functioning until the transplant teams arrive. The team needs to move quickly in order to obtain the heart in the best possible condition; Therefore, you will only receive a few hours’ notice of your transplant.

How are Organs Matched?

Organs are matched mainly by blood type, but size is also important. Children usually receive organs from other children and adults usually receive organs from other adults. The transplant team makes sure that the donated heart is compatible and stands the best chance of success. Organs are not matched by gender, race, or age.

You and the donor will be tested for a variety of viruses and diseases before a final decision about the transplant is made. This is because the anti­rejection drugs you will be taking weaken the body’s defense or “immune” system. This may allow a “sleeping” virus to wake up possibly causing many problems after the transplant. If a donor is found to be positive for dangerous viruses such as hepatitis or HIV (the virus that causes AIDS) the organs are not used. There is always a slight risk that an infection or disease could be missed and passed on from the donor, in much the same way as with a blood transfusion. The medical teams do everything possible to make sure you receive a heart with the greatest chance of transplant success.

Waiting for an Organ

Waiting begins once you and the transplant team has decided that a heart transplant is necessary. At this time, your name is placed on the waiting list and the search for a suitable donor heart begins. Your wait can be as short as one day or as long as a year or more. Exactly how long you wait depends on the availability of a suitable heart and how sick you are compared to other patients waiting.

There are not enough donor hearts available for everyone who may need a heart transplant. Therefore, there is a careful selection process in place to assure that hearts are distributed fairly and to those who will benefit most from the donor heart.
Transplantation is only possible because of the gift for life that organ donors make. Hearts for transplantation come from the bodies of people who have died recently.

Waiting List

How long you must wait for a heart once you are on the waiting list is hard to predict. Some people are matched with a suitable heart immediately, while others may wait for over a year. The average wait is 3­6 months. How long you have to wait will depend on how easy you are to match, and the seriousness of your condition.

There is no order to the waiting list – it is not first come, first served. When a heart is available, the list is checked to find the best possible match. Since some people are harder to match because of their size or blood type, they may have to wait longer. In cases where two people are equally matched to the donor heart, the sicker of the two is chosen.

While you are on the waiting list, either your family doctor, or your specialist, or both will monitor you. How often you see them will depend on your condition. The transplant team will also monitor you. The purpose of these visits is to keep you physically and psychologically healthy and comfortable while you wait.

It is also important to eat a well-balanced diet and try to maintain your normal weight. If you find that your weight is going up or down, let the clinical coordinator know. Should you get a cold, flu, fever, infection, etc., while you are waiting, consult doctor. Contact the clinical coordinator if any new problems arise or if you are hospitalized.

Stress during the Waiting Period

Most people find waiting for a suitable heart very stressful. Some factors causing stress that you may experience are:

The severity of your illness – Finding out that you have a severe illness was probably the first major shock. If this was some time ago, you may have accepted this already. If you found out only recently, you are probably still coming to terms with how this will affect your life.

Worry about finding a heart – Most people finds themselves worrying about whether a suitable heart will be found in time. This worry tends to grow stronger the longer you are on the list. Just remember that most people do get a suitable heart and recover.

Physical disability – Due to your illness, you may find yourself unable to do some things that you used to do easily. For example, you may not be able to drive your car or operate machinery if you become too ill. If you have always enjoyed certain physical activities, giving them up can be hard.

Loss of work – You may find yourself unable to work and support yourself. This could be caused either by your physical disability or because you have to move to be near the hospital.

Financial problems – If you have to give up work, you may find yourself with financial problems or restrictions.

Worries about where to live – You need to find a house in & around the hospital. So that you can be reached to the hospital in a very short span of time once you get an organ alert.

Isolation from friends and family – If you have to move to a rented house temporarily to be near the hospital, you may find yourself isolated from your family and friends. Even if you are still at home, you may find that some friends seem uncomfortable around you and do not know what to say; Some may even seem to avoid you.

Depending on family and friends – If you have physical disabilities, you may find yourself depending on others to help you do things, or you may have to depend on someone else financially. If you have always looked after yourself, this may not be easy, and may result in feelings of frustration, anger, or uselessness.

Concerns about the donor – Some people find themselves concerned that their life depends on the death of someone else. If you have these concerns, remember that the donor is already dead, whether you receive a heart or not. The donor’s death was not caused by your illness. When you receive the heart, the family members of the donor will receive comfort knowing that something good has come of their loss. Knowledge that the donor’s death was not meaningless can help to resolve their grief.

Dealing with Stress – To deal with these feelings, remember that this is a temporary situation, and that once you get better, you will be independent again. The build­up of stress can make it harder to get well again. Remember, a heart is a gift for life from the donor to you it is up to you to take good care of it.

Remember that you are not alone. Most people on the waiting list are going through the same things that you are. To help you get through this period in your life, here are some things to think about that others have found useful.

Know and understand your condition – Find out as much as you can about your condition and your medical treatment. Many people find that the more they know, the better able they are to stay in good health until transplantation.

Discuss your condition with the doctors and transplant coordinators. Bottling up your emotions will increase your level of anxiety. Talking about your fears will help you cope better

Accept your situation. Don’t deny what is happening or pretend that you’re not sick. Be prepared for anything and get your personal affairs in order.

Lean on your close friends and family. Talking about your feelings openly with a partner, friend, or support person can help you.
Continue your normal life as long as you can, and be as independent as you can. Don’t give up anything unless you have to, or your doctor tells you to. Try new things you can enjoy even if you don’t have much energy.
Learn some techniques for reducing your stress level, such as relaxation and breathing exercises. The transplant team’s psychologist or social worker can teach you various techniques. Exercise also reduces stress if you can exercise comfortably. Check with your doctor what kinds of exercise are safe and healthy for you to do.

Keep a positive attitude – Experience clearly shows that those who can keep a positive mental attitude feel better, respond to treatment better, and have a better survival rate than those who let their concerns overwhelm them. Regardless of your situation, try not to lose hope—join the fight for your survival.

Seek professional help. You may want to see a counselor about your anxiety. Getting help for psychological or emotional problems is not a sign of weakness, but a sign that you want to make a commitment to getting well again.

Remember that most people on the waiting list are successfully transplanted and go on to live happy, healthy lives.

Support Group

There are transplant support groups that meet regularly. They consist of people waiting for transplants, as well as those who have already had a transplant. You can reach our support group:

Phone: +919818303306, 011-41838382 or
Send your Query HERE

The purpose of the group is to provide information and mutual support to transplant patients and their families. The gathering gives you a chance to talk with other patients in your area and share your concerns and experiences. Many patients find the group valuable.

Preparing for the Call

Since hearts must be transplanted quickly, and there is no warning of when a suitable heart will be found, you have to keep the mobile always along with you. The call may come any time of the day or night. When a suitable heart is found, you will be called. You must carry the mobile with you at all times.

Once you get the call to come to the hospital, you will have to go to the hospital immediately and not have much time to get ready to leave. Here is list of things to do to prepare for the call. Have this ready at all times.

• Pack a small suitcase in advance with everything that you will need – clothes, toiletries, glasses, book, diary, shoes etc.
• Keep an envelope with a small amount of cash.
• Make a list of the people you need to notify and their phone numbers.

You will be contacted by mobile as soon as a suitable heart is found. When you get the call, stop whatever you are doing and arrange for transport to the hospital without delay. From the moment you receive the call, do not eat or drink anything.

Preparation for Surgery

Your family or support person may either wait at the hospital during the surgery, at home, or elsewhere near the hospital. Make sure the transplant team knows where they can be contacted.

You will have several intravenous lines inserted to provide accurate measurements of your condition during surgery. Sometimes, at this point, the donor heart is found to be unsuitable and the transplant is cancelled. This can be very disappointing for you and your family. This happens occasionally and you should know that the fact that you got a call means you’re getting close. So don’t get disheartened.

Related Links
The Transplant
Post Transplant Care
Rejection & Infections
Going Back Home – Do’s & Don’ts
Things You Need to Know Post Transplant
Lungs
Intestines
Pancreas

References:
Fortis Memorial Research Institute
www.medanta.org
http://www.bhf.org.uk/