by Kimberly Allen R.N.
Because of advancements in medicine, organ and tissue transplants have increased. Unfortunately, most people’s knowledge of how to prepare and how to care for those who are waiting to have or have just had an organ transplant has not kept up with the science behind them.
When a person with a chronic severe illness is to by their doctor that an organ transplant is needed their life and their families lives suddenly change. First the patient is introduced to the transplant team which is headed by a transplant coordinator (TC). The TC is responsible for setting up and managing the care of the transplant patient before, during, and after the transplant. There are many pre-transplant tests and many facilities require the patient and at least one caregiver (CG) to attend pre-transplant classes. All transplant patients are required to have one person that will be their primary CG, but you should always have at least one back up person that can step in should something unexpected or unplanned for happens.
My family didn’t have a back up plan and the unthinkable happened. Six weeks after my mothers lung transplant her husband and primary CG died suddenly and very unexpectedly of a heart attack at 53 years old. Fortunately, that is not the type of incident that occurs frequently. But other things can happen that may require a back up CG to step in.
Because the number of facilities that have transplant teams is limited some patients may have to move temporarily. My mothers facility was a 10 hour ride from the town we lived inso she had to move to wait for ‘the call’. If you don’t have family or friends that live within the limits set by the facility then it’s important for you to discuss this with the TC as they will be able to hellp you with relocating temporarily.
This is a very stressful time for the patient and family as everyone waits for ‘the call’ ans no one know when it will come. It can take weeks or months. Once ‘the call’ comes everything is a rush and things get forgotten. It’s important to have a plan. Who do you call? Have you made sure that there’s always someone available to drive the patient to the facility? Are all the things you need to bring in one place and easy to grab because time is critical at this point. It’s a good idea to have one person designated to make the phone calls, having a list prepared with names and phone numbers is a big help, and another designated to stay with the patient.
Then the next thing you know the surgery is done and it’s time to leave the facility. When the patient first leaves the facility they are required to remain close to the facility so they’re still not ready to go ‘home’. The length of time varies with facility and the patients condition. This added time if too long can become very stressful, especially if the distance from your primary home is great. This is the most critical time for the patient after leaving the facility because the organ and body are still trying to gel together in an uncontrolled environment. It takes very little during this time for the patient to develop life and/or organ threatening infection.
This also a time when the organ can be easily rejected by the body. It was during this time that we discovered just how severly stress impacts the body’s acceptance of the donor organ. The stress brought on by the sudden death of her husband lead to my mothers rejection of the donor organ. The deterioration of her health after transplant meant that she had to stay near the facility and now was also in need of a primary CG. The distance that separated all of us made that a significant challenge, especially when the only person in a position to make the move had no clue what to expect. Though there’s always a home health agency involved, they can not be with the patient 24/7. The patient comes home on an intense medication regime and the medications have numerous risks and side effects.
Many family members and CG’s have their own expectations about the patients recovery and it rarely happens the way they expect. It’s important that as many family members and friends that will be part of the support system understand the side effects of the medications the patient is taking and what affects the recovery process of a transplant patient. If the members of the patients support team are educated and prepared for the post transplant period it will be less stressful for all involved.
Kimberly Allen is a registered nurse with an AND in nursing. She has worked in ACF, LCF and psychiatric facilities, although she spent most of her career as a home health expert. She is now a regular contributor to HealthAndFitnessTalk.com, dispensing advice and knowledge about medical issues and questions. You can reach her with any comments or questions at firstname.lastname@example.org.