Phil Smith never expected his diagnosis with IgA nephropathy (IgAN) at the age of 55. The condition has changed the course of his life and required much adjustment, but he has lived with it now for 12 years and come to terms with its challenges. Here he tells his story and shares the advice he would give to a person newly diagnosed with the condition

Phil Smith, now 67 years old, had no idea that there was anything wrong with his health until a standard health check when he was 55 years old. All was well, other than his blood pressure, which was inexplicably high, even accounting for his “fairly stressful job” as a school inspector and independent educational consultant. A follow-up blood test would show that Phil’s kidneys were functioning at only 30%.

Phil was then referred to the renal clinic at Leicester General Hospital in the UK for further investigation. A kidney biopsy—“not the most pleasant experience”—brought a diagnosis of immunoglobulin A nephropathy (IgAN).

Phil counts himself as lucky to have been referred to an international expert in IgAN at the hospital. “When I had my first consultation, he said ‘You’ve been diagnosed with IgAN. You’ll never have heard of it and the first thing you’re going to do when you leave here is Google it… Don’t!’ He gave me an A4 sheet of paper and said ‘These are the sites you need to go to. Don’t go on social media.’”

This sudden and unexpected diagnosis was the start of Phil’s journey with chronic kidney disease. Phil still had no symptoms at all, but his appointments at the renal clinic every other month showed that his condition was slowly deteriorating. At Christmas in 2018, at the age of 63, Phil’s condition had declined to the point that he was put onto the transplant list.

As with many other people who have had a kidney transplant, Phil vividly remembers the telephone call telling him that a kidney had become available. For him the call came at eight o’clock one April morning that year.

Within the hour Phil and his wife were at the hospital, and soon after that the preparations for the transplant began. “They give you an electrocardiogram and take bloods and test them very quickly and do all sorts of things about your general health. You’re never absolutely sure whether you’re going to get the transplant or not—until you get a particular infusion that is really expensive.”

Phil says that his operation was “relatively straight forward”. However, he needed dialysis for a short time after the operation and this caused complications that resulted in a second operation.

The morning after Phil’s transplant, he was taken aback by the medication that he would now need to take every day. “The medicine trolley came round and the nurse said ‘I’ve got your medication here for you, Mr Smith.’ And she gave me a little cup filled with different pills. ‘Oh my goodness,’ I said, ‘what are all these? ‘Well,’ she said, ‘this is your life from now on.’”

Before his transplant, Phil was taking two pills a day for his high blood pressure. After it, he has needed to take medication to prevent his replacement kidney from being rejected, as well as vitamins and drugs to maintain the correct levels of potassium and other chemicals in his body. “Every day I take as many as nine tablets in the morning and the same at night as well.”

Phil also needs to attend the renal clinic every couple of months for a check of his kidney function. “My new kidney doesn’t perform terribly well. It does everything it needs to do, but its function is not high. From the first day till now it’s always been at the same level. It’s not at a high level, but it’s fine and consistent.” The lead-up to each appointment inevitably brings worry to Phil and his family.

Phil’s treatment makes his immune system very weak, and his immune system has not responded to repeated COVID-19 vaccinations. He has been told to go straight to hospital if he should test positive for the virus so that he can receive the infusion necessary to protect him. 

Being so vulnerable, Phil is still not able to go to restaurants, concerts or church—all things that were a valued part of his life before the pandemic. He still can’t go to the gym, which is a great loss for him.

“Freedom Day” on 19 July 2021, when lockdown restrictions for COVID-19 were lifted in England, was “quite the opposite for people who are immunosuppressed”, Phil says. He is hugely concerned that masks have disappeared, more or less overnight, leaving people such as himself more vulnerable to infection.

“If you go into a supermarket, there’ll be three or four people wearing a mask, and nobody else will be. Even in hospital waiting rooms, half-full of people who are immunosuppressed, there are people not wearing masks.”

Altogether, the impact of COVID-19 on people who are immunosuppressed has been “absolutely horrendous”, he says. Their horizons have shrunk in untold ways, separating them from their loved ones, restricting their activities and leaving them vulnerable at every turn. 

Phil has taken an active role within the community since shortly after his diagnosis. As going to the gym was such an important part of Phil’s life, his consultant introduced him to Professor Alice Smith, head of the Leicester Kidney Lifestyle Team, and Phil willingly gave his time to her research on fitness and muscle building. “Thirty is a key age in human beings because from then you start to lose muscle. And if you’re a kidney patient, you lose it a lot faster, so muscle-building and fitness are really important to keep your muscle mass up.”

That initial involvement in research would lead to Phil helping out with the organisation of the IgA nephropathy patient information day, which takes place annually. After that, Phil became heavily involved with Kidney Research UK. For six years he chaired its lay advisory committee, which reviews all the work of the organisation and gives feedback. 

Phil is a member of a Facebook group where patients from the UK and farther afield can share their experiences and have “a sense of community” and he helps out with the website too.

At 67 years old, Phil is now doing less than he was, but he has contributed a great deal to the kidney patient community for many years.

1 – “Don’t panic”

“If there was a newly diagnosed person and I was to give them some guidance, then the first thing I would say is ‘don’t panic’. Nothing is going to happen to you overnight. This is a very slow process, you’re not suddenly going to become ill.

“So, take your time and get to know your nephrologist really well, so if anything does happen or you’ve got real concerns, there’s somebody for you to contact.”

2 – Dialogue is critical

Phil has built an excellent relationship with his own nephrologist and emphasises the value of the regular two-way conversations they have.

“The purpose of a clinic visit is not just for them to talk to you, it’s for dialogue.”

He has been surprised to learn that some patients sit silently during their consultations, perhaps with unanswered questions in their minds. Phil advises a more active approach and he will sometimes bring along a list of his questions with him.

3 – Have open channels of communication

As well as his in-person meetings with his nephrologist, Phil has telephone and email details for the kidney ward in case he has any concerns between his appointments. “Make sure, there’s open channels of communication,” he advises.

4 – Join a patients’ group. But remember that patients’ journeys differ

Connecting with other patients in-person or through an internet forum is extremely helpful, Phil says. When people do this, they can share their diagnosis or their news about disease progression and ask what to expect. 

“You’ll get a big response, you’ll get 20 or 30 people saying, ‘Well, you know, these are the sort of things that could happen, this is what happened to me’. It won’t necessarily happen to you too, but it gives you some sort of insight.”

“Lots of patients make the assumption that everybody’s journey is like theirs. And, of course, they’re all different.”

“I was diagnosed when I was 55, but IgAN is often associated with young people. IgAN also has effects on people like tiredness and exhaustion, flank pain, leg pain, visible haematuria (blood in the urine), swelling and water retention, but I’ve been completely asymptomatic throughout. People can have weight gain and develop a moon-face appearance as a result of their medication. I’m very fortunate in that I don’t have any of that either.”

Phil explains that his journey to transplant was also particularly smooth as he received a kidney transplant quickly without needing dialysis first. People also have different experiences depending on where they live and how difficult it is to find a matching kidney for transplantation, he says. Patients from ethnic minorities often have to wait much longer because of a shortage of donors, he adds.

6 – Support the caregiver

Patients’ forums are useful to patients in helping them to understand the medical information they have received and processing it emotionally. They are also a valuable resource for caregivers and families—you don’t need to be a patient to participate in these groups, Phil says.

7 – Get involved in research

Phil recommends that people get involved in research, whether it is around a drug trial or around other aspects of kidney disease, just as he has done in his work on fitness. He says that people in the UK can register for research through the NIHR (National Institute for Health and Care Research) website and that they can also explore the Medical Research Council website. “Once you’re in there, you’ll get much more insight into what’s going on. If there’s something going on around your disease, apply to be part of it.”

8 – Beware false information

Phil’s final piece of advice echoes that given to him by his consultant on the first day of his diagnosis: be cautious about what you read on social media and the web. Sadly, there is far too much false information out there, promising a cure with “berries and potions”, he says. Phil recommends that people stick with patient-focused sites where patients share their experiences and with reputable organisations such as Kidney Research UK.

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Date of preparation October 2022 – UK-NA-2200160

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