From now until the call
Once the Patient Selection Committeee (or Medical Review Board) decides that you are an acceptable candidate for heart transplant, you are given a pager or beeper. You must keep the batteries fresh (buy new ones every 3 months) and keep this with you at all times.
When a heart becomes available for you, the transplant coordinator will call you on the phone. Only if you cannot be reached by phone will you be paged. When you get the call, head straight for the hospital - do not pass go, do not collect $200! You will be instructed on details by the transplant coordinator. Once you get the call, do not eat or drink anything at all.
When you get the call and head for the hospital, keep it under the speed limit! Otherwise, the cop who stops you will not be amused. Police quite properly think that if your rush is that great, you should be in an ambulance. Plus, if you crash your car and thus yourself, you can kiss that new heart goodbye.
There are 4 kinds of people on the heart transplant waiting list:
- Status 1A
- Patients who must stay in the hospital and require IV drugs, a heart assist device, a ventilator, or who have a life expectancy of a week or less without a transplant. If you are under 18 years of age, you may be Status 1A with slightly less severe problems. Status 1A patients have the highest priority on the waiting list
- Status 1B
- Patients who are not confined to the hospital, but who require a heart assist device or continuous IV meds while at home (or wherever). Some of the newer assist devices do allow a patient to wait at home. Status 1B patients have the second-highest priority on the waiting list
- Status 2
- All other "active" patients on the transplant waiting list. If you are a Status 2 patient waiting at home, you will be seen at regular intervals by your transplant cardiologist, probably once every 4 weeks. You will have a right heart cath about every 3 months to check your pulmonary pressures. While you wait, remember to be prepared!
- Status 7
- Patients who are temporarily inactive, meaning they are not waiting to get that call right now for some reason
- Pack a bag as soon as you are put on the waiting list. Include everything you will need during your hospital stay, which will be anywhere from 7 days to a couple of months
- Arrange for a driver who will take you to the hospital when you get the call. Make it someone reliable, since the call may come at any time and they must be willing to leave work or maybe get up in the middle of the night, all in a very big hurry
- Arrange a family member or friend to be your designated "contact person." The transplant team does not have time to tell 30 people a day how you are. This person will be the only one allowed to check on your condition by phone and he will have to keep everyone else updated
- If you need to travel somewhere your pager will not reach, call your transplant coordinator and tell him where you will be staying, how you can be reached, and how long it will take you from there to reach the hospital. You will be taken off the waiting list if you travel too far and could not reach the hospital in a few hours
I am not explaining the organ network that notifies transplant centers when a matching donor organ is available. You can read quite a lot about it here. Other things you really need to do while you wait (don't put them off) include:
- Buy a blood pressure monitor - a good one
- Decide on a pharmacy. Go there and talk to the pharmacist in charge and the manager of the overall store about whether they can meet your needs. Transplant meds do not "keep" well and they are very expensive, so most pharmacies do not stock them as routine items. That means your pharmacy must be reliable. They must be aware that any interruption in your drug supply can threaten your life. Mail-order pharmacy services that specialize in transplant medicine are available. Ask your social worker about them if you are interested
- Buy a decent weight scale for your home
- Buy a decent thermometer for your home
- Buy a pill box to organize your meds. These boxes have compartments, each with its own lid. Usually, there are 4 compartments (for different times of that day) in each of 7 rows, one for each day of the week. Put your meds in the proper compartments at week's beginning. This avoids mistakes that come from messing with lots of different pill bottles several times every day
- Talk to your dentist about your upcoming heart transplant. Have your manual from the transplant center handy so you can answer any questions he may have about meds, future dental work, etc,...
Material taken from manuals given to potential transplant recipients at transplant centers in the USA, and from heart transplant recipients - Updated April 24, 2002
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.