Kidney diagnosis support
Receiving a kidney diagnosis can be life-changing. It can bring uncertainty, worry and many questions. You might feel overwhelmed, but you do not have to face this alone. Whether you have just been diagnosed, are managing kidney disease or are waiting for a transplant, support is available.
At ACLT, we understand how difficult this journey can be, not just physically but emotionally too. We are here to provide guidance, reassurance and a community that cares. If you need someone to talk to, have questions about your next steps or just want to connect with others who understand, reach out to our patient support team.
Finding a living kidney donor
On your journey of finding a kidney match, they will first look for a living kidney donor, this is a healthy person who can donate their kidney to someone with kidney failure as they can live healthily with one kidney.
The living kidney donor can be any one from family, friends, a work colleague or someone who has seen your kidney appeal, if they are a match. We will discuss in the next section what makes someone a match.
As well as living donors you can also receive from a deceased donor (someone who has opted into donating their kidney when they pass), however going down this road can take years for a match to become available and a donation from a living donor can last longer and are more likely to start working straight away.
What makes someone my match?
Blood type compatibility – The first step is ensuring the donor and recipient have compatible blood types. If the blood types aren’t compatible, desensitisation treatments or a paired kidney exchange might still make the transplant possible.
Human leukocyte antigen (HLA) matching – HLA are proteins on white blood cells that help the immune system recognise “self” vs. “foreign” tissues. The more HLA markers a donor and recipient share, the lower the risk of organ rejection.
- A full match is rare and most common among siblings.
- A partial match can still work with medication to prevent rejection.
Crossmatch testing – The recipient’s blood is mixed with the donor’s to see if antibodies attack the donor’s cells.
- A negative crossmatch means the transplant is likely to succeed.
- A positive crossmatch means the recipient’s immune system may reject the kidney, but special treatments may still allow the transplant.
How does my ethnicity contribute to me finding my donor match?
HLA (Human Leukocyte Antigen) plays a crucial role in kidney transplants, as it determines how well a recipient’s immune system will accept a donor kidney.
Black patients often struggle to find matches because they have greater genetic diversity in HLA types and are underrepresented in donor registries.
Since HLA is inherited, Black patients have a better chance of matching with donors of Black heritage, but the shortage of Black donors makes transplants more difficult.
Increasing Black donor registrations, promoting paired kidney exchanges, and using desensitisation therapy can help overcome these challenges. Raising awareness within Black communities is essential to improving transplant success rates and saving lives.
Black communities have lower rates of both living and deceased organ donors due to factors such as lack of awareness, medical mistrust, religious and cultural misconceptions, limited family discussions about donation, and health inequalities that can disqualify potential donors.
As a result, Black patients face longer wait times for kidney transplants, despite being disproportionately affected by kidney disease. Since kidneys from donors of the same ethnic background have a higher chance of long-term success, increasing Black donor registrations is crucial.
Solutions include education campaigns, community champions, faith-based outreach, and sharing success stories to break down stigma and encourage more people to register as donors.
Black communities in the UK are disproportionately affected by kidney disease, largely due to higher rates of conditions like hypertension and type 2 diabetes, which are leading causes of kidney failure.
These conditions are more prevalent due to a mix of genetic, lifestyle, and socioeconomic factors, including limited access to early diagnosis and treatment.
Black individuals in the UK are five times more likely to develop kidney failure than White individuals and are overrepresented on the transplant waiting list.
However, due to a shortage of Black organ donors, they often wait significantly longer for a suitable kidney match.
Increasing awareness, encouraging regular health checks, and boosting donor registrations within Black communities are crucial steps to addressing this disparity.
Need to find your match? We want to advocate for you.
The ACLT are here to advocate and appeal for you. Whether you need support in getting the medical help you need or finding your kidney donor match, we continually work to voice to our community to register to donate to save someone’s life – that life could be yours.
If you need support in anyway, our dedicated patient support team are here to listen.
Life after a transplant…
A kidney transplant can be life-changing, but it’s important to understand what’s involved to give yourself the best chance of a healthy life. While a transplant can improve your quality of life, it is not a cure for kidney disease, and long-term success depends on proper care.
To protect your new kidney:
- Take your medication as prescribed – Anti-rejection drugs are essential to stop your body from rejecting the kidney.
- Stay connected with your transplant team – Attend all check-ups, have regular blood tests, and reach out with any concerns.
- Live a healthy lifestyle – Eat a balanced diet, stay active, maintain a healthy weight, and quit smoking if necessary to reduce the risk of complications.
A transplant generally leads to a longer life expectancy compared to dialysis. Looking after your kidney and overall health gives you the best chance of a longer, healthier future.
Rejection is one of the biggest risks after a kidney transplant. Because your body recognises the new kidney as foreign, it may try to attack it. To prevent this, you must take your anti-rejection medication exactly as prescribed.
There are two main types of rejection:
- Acute rejection – Can occur at any time but is most common in the first year. It is usually treatable if caught early.
- Chronic rejection – Develops gradually over time and is harder to treat, making it the leading cause of transplant failure.
Taking your medication as directed is the best way to protect your kidney, but rejection can still happen. The earlier it is detected, the better the chances of managing it.
Signs of rejection to report to your transplant team:
- Flu-like symptoms
- Fever
- Reduced urine output
- Unexpected weight gain
- Pain or tenderness near your kidney
- Fatigue
Sometimes, rejection has no obvious symptoms, which is why regular blood tests and follow-up appointments are essential to monitor your kidney’s health.
Anti-rejection medications (immunosuppressants) weaken your immune system to prevent it from attacking your transplanted kidney. You will need to take them for as long as you have your transplant.
Each patient’s medication plan is different, but most people take two to three medications once or twice a day. The cost varies depending on your healthcare coverage.
These medications can have side effects, though they often improve over time. Regular blood tests help monitor drug levels to reduce side effects and prevent rejection. If you experience any issues, speak to your doctor about adjusting your dosage or medication type.
No matter how well you feel, never stop taking your anti-rejection medication. Missing doses can lead to rejection, which may result in kidney failure and the need for dialysis or another transplant.
After a transplant, you can return to many aspects of normal life, including routine doctor visits. However, while anti-rejection medications protect your kidney, they can also increase the risk of issues such as eye problems, skin cancer, and dental complications.
Regular check-ups are essential, and you should see the following doctors at least once a year:
- GP (Primary Care Doctor) – For overall health and routine screenings
- Nephrologist – To monitor your kidney function
- Dermatologist – To check for skin cancer and other skin issues
- Dentist – To maintain oral health
- Optometrist – To detect any eye problems early
You can also reduce your risk of complications by:
- Wearing sunscreen and a hat for sun protection
- Avoiding smoking
- Practising safe sex
- Staying up to date with cancer screenings
Keeping up with medical appointments and following these precautions will help you stay healthy and protect your transplant for years to come.
Most kidney transplant recipients can enjoy a varied diet, but maintaining a healthy, balanced diet (low in fat and salt) and staying hydrated is essential. If you have diabetes or other health conditions, you may still have some dietary restrictions, and a dietitian can help tailor a meal plan for you.
Weight gain is common after a transplant due to increased appetite from medications and the ability to eat a wider range of foods than before. However, gaining too much weight can raise the risk of heart disease, high blood pressure, and diabetes. If needed, your transplant team’s dietitian can offer guidance on managing your weight.
Some foods should be avoided to prevent infections or complications, including:
- Raw or undercooked meat, fish, seafood, and eggs
- Unpasteurised milk, cheese, and yogurt
- Grapefruit and unwashed fruits or vegetables
Your healthcare team will advise you on any other dietary precautions to help keep you and your transplant healthy.
Going through kidney failure, dialysis, or a transplant can be emotionally challenging. Many people experience anxiety, depression, or even guilt after receiving a kidney. It’s normal to feel overwhelmed by lifestyle changes, sleep issues, other health concerns, or the stress of the transplant itself. You may worry about your living donor’s well-being or feel conflicted knowing that someone had to pass away for you to receive a kidney.
Anti-rejection medications can sometimes contribute to mood swings or depression, so if you’re struggling, let your transplant team know—they may be able to adjust your medication or offer support. Remember, these feelings are normal and can happen right after transplant or even years later. Seeking help when needed can make a big difference in your well-being.
A successful kidney transplant can improve fertility in both men and women if kidney disease or dialysis was the cause of the issue. Women who want to become pregnant should wait at least one year after transplant and consult their doctor, as some medications may be harmful during pregnancy.
Questions to ask your doctor
Before Transplant:
- What long-term health risks or complications should I be aware of, considering my family history?
- How will you coordinate my care with my other doctors after the transplant?
- What tips can help me stay organised with my medications?
- What healthy meals should I be eating?
- What exercises are safe for me to stay active?
- How long should I wait before travelling?
After Transplant:
- Are my medication levels correct for me?
- How often should I have lab tests, and can I do them somewhere closer to home?
- Is my kidney showing any signs of chronic rejection? How is that being monitored?
- What are my options for a safe and healthy pregnancy?
