Your evaluation is complete and you’ve been placed on the list for an organ transplant. Now you wait. It may take several months of waiting for a donor organ to become available, but when it happens, you may need to get to your transplant center quickly.
Some of your waiting time can be spent preparing for that call. Make a list of the things you should do and consider partially packing so you will be ready when the time comes.
To help you begin, we have compiled a list of things to consider when you are preparing for your transplant surgery.
General Preparedness
Once you find out you need a transplant, preparing for surgery can start immediately even though you might need to wait for a donor organ. Some things you can do before surgery to ensure you’re prepared include:
- Attend all the appointments and education as directed by your care team.
- Take all your medications as directed by your physician.
- If you smoke, begin the process of quitting.
- Eat healthy foods like fruits, vegetables, lean protein, and whole grains.
- Exercise as you are able to maintain your energy level.
- Get plenty of rest.
- Make sure your caregiver arrangements are in place. If your caregiver should need to step away during your wait, identify someone who can step in if needed.
- Start arranging coverage at home for kids, pets, gardens, household chores, etc. Depending on the location of your transplant center, you may be away from home for an extended time.
Fasting Prior to Surgery
When you get that call to come to the transplant center or you’re approaching the day of your living donor surgery, you should follow the fasting instructions given to you by your care team. General anesthesia relaxes the muscles in your digestive tract and airway. These muscles keep food and acid from passing from your stomach into your lungs. If your stomach is empty, there is less chance this could happen during surgery.
Medications
Some medications may cause complications during surgery. Make sure to discuss each of your medications, including herbals and supplements, with your doctor prior to surgery. The care team will let you know which medications you should continue and which you should not take prior to surgery. Be sure to bring a supply of your medications in their original containers with you when you get the call to report for surgery.
Valuables
Plan on leaving all your valuable items at home or with your caregiver. Rings, watches and other jewelry can’t be worn during surgery. Cell phones and electronics won’t be helpful to you until after you wake up from your surgery. Hospital rooms don’t have locks on the doors, so leaving your items in your hospital room could leave them vulnerable.
Packing Your Suitcase
When you get the call for transplant, you may have only a short time before you need to leave for the hospital. Having a suitcase ready (or at least a list of what to pack) might prevent some stress when you get the call. Many articles are written about what to pack in your suitcase prior to leaving for a hospital stay. Personal care products, comfortable clothing, and your phone chargers are a few of the things that seem straightforward, and most of us wouldn’t forget them. Have you considered what you will need that the hospital doesn’t provide? After your hospital dismissal, you will likely be required to stay in town for several days/weeks to be close for your aftercare. Did you pack for those days? You will have a caregiver with you for your surgery and after your hospital stay. Did they pack a bag for themselves? Here are a few more ideas that you may not have considered:
- Contact solution, conditioner, lip balm, lotion and a mirror. It can be dry in the hospital, and the only mirror is usually in the bathroom.
- Earbuds or headphones can be helpful to drown out the noise in the hospital or to listen to movies or music without disrupting your roommate or your visitors.
- Blood pressure cuff and thermometer to use after you are dismissed.
- Many comfortable clothing options for your time after the hospital. Chose items that don’t fit tight and are easy to remove for your many appointments.
- Books or hobbies to help pass time in the hospital and as you wait in town before going home.
One of our followers, a caregiver for a transplant patient, said she packed a bag for the recipient but forgot to pack anything for herself. Caregivers don’t need to have the added stress of finding clothes, personal items, and medications while trying to focus on caring for a loved one. Be sure your caregiver has everything they need before you leave for the hospital.
Emotional Preparedness
Preparing yourself emotionally for your transplant surgery is just as important as being medically and practically prepared. You might experience feelings of frustration or anxiety over waiting for an organ to become available. Not everyone on the transplant list is able to get an organ for transplant. Not knowing if and when you will receive the call can be difficult. In the case of deceased donor transplants, another person has to die in order for the organ recipient to live. This can be hard for some recipients to think about and can lead to sad or conflicting feelings for some. Your emotional preparedness is important to your transplant care team. Talk with your social worker, psychologist or psychiatrist about coping strategies you can use to prepare emotionally for the wait, the organ offer, and the transplant surgery.
Some patients from our discussion group have given advice for journaling before and after your transplant. Whether you do this personally in a book, or you do this publicly on a website such as Caring Bridge, you will have notes about what you did and how you felt during this time. Many people have noted that they don’t remember what happened during their transplant process and their journal was a great tool to remind them of events and milestones.
For those readers who have already received a transplant, what was the most important way you prepared for the call?
- Explore Mayo’s Transplant Center.
- Join Mayo’s Transplant Discussion Group
- Request an appointment.
To understand how journaling may help you and help you manage your transplant journey see our support group thread here: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Ginger
One thing that I spent a lot of time on was researching living arrangements as I knew that me and my caregivers would need to remain in town for at least a couple months after the transplant. Staying at the transplant house really wasn’t an option for my situation as my elderly parents shared caregiver duties with my husband. Short term furnished apartment rentals were much more economical than hotels. And allowed us to be able to prepare food easily and relax in a homey environment. This was very helpful because I ended up being hospitalized before the transplant and a caregiver was in town with me for about 5 months (pre and post transplant).