There are not enough donors available for everyone who may need a transplant. Therefore, there is a careful selection process in place to assure that all organs are distributed fairly and to those who will benefit most from the donor lungs.
Transplantation is only possible because of the gift for life that organ donors make. Organs for transplantation come from the bodies of people who have died recently (been declared brain dead). Depending on your size, blood type and type of transplant needed, you can expect to wait from days to months or more. Most of this waiting time can be spent at home.
You should remain active while waiting at home. Getting involved in a pulmonary rehabilitation program is essential for most patients. If you have severe pulmonary hypertension or a heart defect, check with your transplant coordinator and doctor before exercising. Going to work is also good for most patients. Work can provide a sense of well-being and social support, as well as income.
While you are waiting at home you should continue to see your regular pulmonologist or family doctor. You will have regular clinic visits where the doctor may culture your sputum and repeat pulmonary function tests, chest x-rays, or blood work. Remember to bring your list of questions for the transplant team.
If you are travelling to a hospital which is some distance away while on supplemental oxygen and need refills while you are here, you must contact your home oxygen provider prior to travelling. That provider will subcontract with an oxygen vendor in the area where the hospital is located, to meet your needs. If your local oxygen provider does not have a contact in this area, please contact the social worker/transplant coordinator for a list of providers.
Stress & Support Groups
Most people find waiting for a suitable lung(s) 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 donor – Most people find themselves worrying about whether a suitable lungs 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 lungs 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 the lungs or not. The donor’s death was not caused by your illness. When you receive the lung(s), 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 build-up of stress can make it harder to get well again. Remember, a lung 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.
Remember that most people on the waiting list are successfully transplanted and go on to live happy, healthy lives.
Seek professional help – You may want to see a counsellor 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.
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. ORGAN India has support groups for just this purpose. If you are interested in joining one, please find more information on the link https://www.organindia.org/support-group/.
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.
You may be asked to move to some where near the hospital before your transplant, depending on how far you live from the hospital. It is in your best medical interest to move to the area before your transplant. You will also need to make arrangements to stay in the area for at least three months after your transplant. Your transplant coordinator will contact you when it is time to move. Remember to notify your transplant coordinator of your new address and phone number.You will also need to update your files with the hospital registration.
It is important to live as normal a life as possible while waiting. Vacations and family outings are part of living. Notify your transplant coordinator of any trips.Long distance trips are discouraged in case lungs become available during the time you are away. It is important that we be able to contact you at all times. If you move or change phone numbers, please notify your transplant coordinator.
Many patients tell us that the waiting time is the hardest part of the transplant. Keeping busy and staying as healthy as possible will help the time to pass more quickly.