Leaving hospital

A combination of drugs called anti-rejection drugs or immunosuppressants will care for your organ throughout the life of your transplant. These medicines suppress the immune system so your body can accept the new organ, and control rejection.

A suppressed immune systems means you’ll have to carry out everyday activities more carefully than other people so that the new organ is safe and your quality of life is maximised.

High blood pressure, increased fat in the blood (cholesterol levels) and fluid retention are some of the side effects of the medications and you may need additional drugs to manage these.

Initial doses of transplant medication can also cause tremors, weakness and blurred vision. With time, these symptoms may settle down as the doses reduce and your body adjusts to the immunosuppressants. For more on medications click here.

Kidney pancreas recipient Patricia Scheetz with husband Russell, post-surgery. Photo: Janie Barrett, courtesy of the Sydney Morning Herald.

 Golden Staph, a bacteria commonly carried in the skin or nose of healthy people, is generally harmless. However, if this bacteria enters the body though a cut or wound, it can cause mild to severe infections. Golden Staph is spread through skin-on-skin contact; by using contaminated objects (door knobs, telephones, television remotes, elevator buttons, contaminated food), or inhaling infected droplets dispersed by coughing or sneezing.

A staph infection can manifest on the skin (boils and abscesses) or in the bloodstream. Swelling or redness on the skin, or a temperature above normal can be indicative of an infection.

Protect yourself by washing hands thoroughly with soap and water or with antibacterial gels, and covering exposed wounds. Mild cases of skin infections can be treated with antibacterial ointments while more severe cases can be managed with antibiotics.

 Pneumocystis (PCP) is an organism that doesn’t affect healthy people. However, this can cause a serious form of pneumonia in recipients. Treatable with antibiotics, PCP causes cold and flu like symptoms, tightness of chest, coughs, weight loss and elevated temperatures. Transplant recipients are prescribed antibiotics (Bactrim or Resprim to be taken twice a week) as a preventative.

Herpes virus infections like  Cytomegalovirus (CMV), Epstein Barr Virus (EPV) and Herpes Simplex Virus (HSV) are a risk to recipients. They remain dormant in healthy bodies and can reactivate when the immune system is suppressed. There is a high chance of these viruses becoming active after surgery if either you or your donor have been exposed to it at any time in your lives.

CMV symptoms include temperature spikes, loss of appetite, lethargy, abdominal pain and diarrhoea. EPV indications include sore throat, swollen glands, fatigue, fever, lack of appetite, rash, weakness and sore muscles.

Cold sores usually appear on the lips and can spread into the mouth. If you notice sores or eruptions on your lips, you must inform your doctor at the earliest opportunity to commence antiviral treatment.

Your doctors will assess you for risks associated with EPV/CMV. Gancyclovir is commonly used in the prevention or treatment.

Life after transplant will have new challenges and successes. Recipients have reported feeling relieved and elated after the success of their surgery. With time though, initial optimism may be tinged with other feelings.

You may start to worry about your condition coming back, or for the safety of the organ. Medications may cause emotional highs and lows. Recipients have described feeling irritable and disinterested in activities they used to enjoy before.

Stress about commencing/returning to the workforce is common. Illness and organ failure often force recipients to take a break from employment. Integrating at the workplace, picking up a high-stress job, remaining safe from infections, juggling frequent medical appointments and health issues can be a worry. Part-time work or opting for less stressful roles helped some recipients ease into their jobs.

“I’m worried about going back to work. I don’t know how I’ll cope with the stress” – anonymous recipient, 6 weeks after kidney transplant.

Reflecting on the donor and feeling guilty about benefiting from their death; feeling bound by a sense of obligation to the donor for a new lease in life are common thoughts too. These thoughts can manifest into feelings of pressure.

Meeting other recipients at events like the Australian Transplant Games can be beneficial. Sharing experiences/feelings with people who face similar circumstances was reassuring for many recipients. For others, communicating with the donor family helped.

Consult your GP if you or your carer are concerned about your moods. For more information on emotional wellbeing post-transplant, click here 

Reengaging with friends and family will help you move on. The emotional stress of illness and surgery may have put a strain on your close relationships. Reconnecting with your partner and resuming your sex life is critical for recovery.

Sexual activity will not harm your transplanted organ, although external and internal wounds need to heal before resuming any vigorous activity. This usually takes between 4-8 weeks depending on the type of transplant.

Some recipients find an improvement in sexual function and desire post transplant. However, some medications may lead to weight gain, acne, bruising and increased body hair, which can cause recipients to feel unattractive and less interested in sex. Recipients may also experience a loss of libido (some blood pressure medicines can cause this). Speak to your doctor who can suggest alternative medications to reduce these side effects.

Safe sex for transplant recipients: If you’re single or starting a new relationship, be aware that recipients can catch STDs more easily due to a low immune system. Protect yourself from sexually transmitted diseases by using condoms and report genital rashes, sores, unusual discharge or yeast infections immediately.

Women on immunosuppressants are more prone to urinary tract infections than men because of the proximity of the vagina, anus and urethra. This makes it easier for bacteria to reach the bladder. To remain safe, it’s important to empty your bladder before and after sexual activity, and wipe from front to back after bowel movements.

Pregnancy: When it comes to pregnancy, every recipient is different. It takes time (usually 1-2 years) for the medication regime to stabilise and the transplanted organ to function well. It’s advisable for women to ensure they are healthy enough to have a baby and avoid the risk of rejection before they decide to grow their family.

Many recipients have successfully become parents. You need to speak to your doctor if you are considering having children as some immunosuppressants can be harmful to the unborn child. Your physician will be able to change your medications and recommend ways of having a safe pregnancy.

To avoid unwanted pregnancies, discuss birth control options with your transplant doctor. Condoms, diaphragms, and spermicidal jellies are usually safe for recipients to use. However, some contraceptive pills can interact with your medications. Check with your doctor for a product that is suitable for you.

Communicating with the donor family

Transplant recipients have the opportunity, through their transplant coordinator, to communicate with the family of their donor to express their thanks and appreciation. To the donor family this may bring comfort and help them through their bereavement.

Because it’s sometimes difficult to put into words expressions of gratitude, transplant recipients can ask their transplant coordinator or social worker for help to write their message. In addition, Donatelife has prepared Correspondence Guidelines for transplant recipients to write to their donor families.

Keep in mind that the donor family has suffered the loss of a loved one and may choose not to respond immediately, or at all. In turn, some transplant recipients choose not to communicate with their donor families at all, or sometimes much later, at a time that feels right for them.

Donor families can, and frequently do, request updates through Donatelife about transplant recipients’ wellbeing. The identity of the donor and recipients are kept anonymous to maintain privacy. For more information on donor-recipient contact, visit DonateLife.

The Donatelife agencies conduct Services of Remembrance throughout Australia to acknowledge the generosity of donors and their families, and provide an opportunity for transplant recipients to show their gratitude.

“On behalf of a mother of a donor, thanks for the appreciation. The acknowledgement really does help with our loss.” – Cate Hale, donor family member, DonateLife Thank You Day 2015.

Living donors

Just as donor families make the important decision for their loved-ones to become donors, living donors make one of the most immense decisions of their lives to donate. In both cases, it is a gift by choice to transform the life of another.

To honour this ultimate act of giving by donor families and living donors, transplant recipients can show their deepest appreciation through written and spoken words of gratitude; by living life to the full and taking great care of themselves to ensure that their transplant has every possible opportunity to thrive.

Transplant Australia endorses the support programs that are offered for living donors through such organisations as Kidney Health who provide a Kidney Health Information Service to answer any queries that potential living donors may have.

The Australian Department of Health offers the Supporting Living Organ Donors Program to assist with reimbursing expenses incurred as part of the donation process.