We are very grateful to Richard Stephen, a patient using PKB, for sharing his inspiring personal story in this blog which he has updated for World Kidney Day 2025
October 2019
“Within the next six months, you will either be on dialysis or have had a transplant,” said my specialist at the Edinburgh Renal Department.
October 2024
I’m not and I haven’t….
Read my full story here
October 2019
In the days following that initial appointment, discussions began about meeting with the dialysis team and finding a transplant donor. During this time, a chance encounter with another kidney patient took place.
We started talking about creatinine levels and eGFR (estimated Glomerular Filtration Rate) numbers and my trip into “everything you wanted to know about the kidneys” had now started.
Creatinine and eGFR
Creatinine is a breakdown product of normal muscle and meat in the diet. It must be removed from the body by the kidneys. A high level of Creatinine indicates that the kidneys may not be working properly.
A very high level above 360 μmol/L (say) indicates that the kidneys are close to failure. When I was admitted to hospital, my level was 742 μmol/L. A normal level should be between 45 μmol/L -105 μmol/L. Women’s normal levels are the lower part in that range.
I equally learned that eGFR is also a measure of how well your kidneys are working. It is a formula using your creatinine level and your age, sex, body type and race.
It is expressed as a percentage, because some people prefer to be told that their kidneys are working at 90%, which is very good, rather than your Creatinine level is 120 μmol/L. When I was admitted to hospital, my eGFR was 6.9%.
UKKA and Patients Know Best
My fellow-patient strongly advised me to use a piece of software provided by the UKKA called PatientView: “This’ll give your blood test results and using the normal ranges given in each measurement, you will see where you need to improve”, he said. “The doctors don’t have the time to tell you everything”, he added. “You will then feel reassured about what’s happening and you can ask the questions that you would like them to answer”.
So now I knew that if my creatinine level fell, then my eGFR (percentage) would go up.
Note: the UKKA subsequently switched to PKB (Patients Know Best). PKB imported my previous data from PatientView, after a short hiatus here in Scotland, just after August 2023, when PatientView was switched off. It took me a while to get used to PKB’s different display, but I then discovered a host of other useful features which have helped me even more.
October 2019 – February 2020
Between October 2019 and February 2020, it became clear that I needed to make some tough decisions. I was relieved that meetings with both the transplant team and the dialysis team were taking some time to organise because I did not want either option.
With dialysis, my thoughts centred around (in no particular order) these.
- A dislike of being connected to a machine for hours at a time every second or third day – and that day being almost exclusively a “ dialysis day and little else”. Even going to and from the hospital would take up time but would I be fit enough to make my own way home on public transport?
- A concern about my reactions to this treatment – how much recovery time would I need – I had already talked to a dialysis nurse (an ex-neighbour) and also a friend on the subject of dialysis so I knew that some people react very badly
- A total change to the life I’d been leading which included holidays to such as South America, Africa and the Far East, including trekking, safaris and water sports.
- A reduction in gym classes and other keep fit activities
- A concern that I may suddenly become dependent on others for certain mundane activities like cooking and housework
- A dislike of being codependent on anything involving equipment: I’m quite happy to go on my own hands, knees, feet, and bum (e.g. hill-climbing), but don’t hook me up with various things that might fail.
With a transplant my thoughts centred around (in no particular order) these.
- I already knew about the definite effects of immunosuppressant drugs, such as the dangers of being exposed to any illness and sunlight and as a result my current lifestyle would be severely curtained
- Despite the drugs, organ rejection could still be possible
- It probably sounds stupid, but I’d be depending on someone else’s “parts”
- Although my daughter had immediately volunteered to donate a kidney, I had equally immediately declined – I’d had 71 years (still a bit young) but I point blank refused to give her any other life issues to deal with than those of being a single mum
I started studying how to use my results to see if I could find some way out of my situation.
I certainly recalled an Isaac Newton theory which stated something like “for every action, there is an equal and opposite reaction”. I interpreted this along the lines of “there must be a way to reverse the predicted kidney decline”. The plan was to find what that was. Meanwhile, although I had a terminal illness, I didn’t feel unwell, I was not in pain and my lifestyle was only slightly curtained with the catheter (which had been fitted due to prostate issues) and I knew that should be temporary.
Early results from the period between Oct 2019 – Oct 2020 are below (imported from PatientView, displayed by PKB).
Creatinine [Moles/volume] in Serum or Plasma umol/L
eGFR percentage
During this period, it was obvious that I had (at least), to reduce my creatinine to below 360 μmol/L, equivalent to an eGFR of 14% (at that time 359 μmol/L would give me an eGFR of 15%).
The February 2020 blip was the night of my TURP (Transurethral resection of the prostate) when I developed TURP syndrome and lost a large quantity of blood.
According to my specialist, the only way she’d promote me into stage 4 is if I maintained an eGFR of equal to or greater than 15% for a continuous period of 6 months. She didn’t actually say “promote” but I like thinking about it that way; weirdly, it boosts my determination to improve.
Talking about Diet
The dietitian at Edinburgh Renal emphasised the importance of diet—advising me to limit these nutrients to half of what healthy individuals consume.
She provided me with a booklet outlining dietary guidelines, which should ideally be part of every patient’s personalised treatment plan.
Before discovering the platform, I had already begun altering my diet. Following my progress here made it easier. Here are some recent results displayed by PKB (in this case Potassium):
Potassium [Moles/volume] in Serum or Plasma mmol/L
Acceptable Range:3.5 – 5.5 mmol/L
Please note that kidney units do not yet provide PKB with all the normal ranges for test results so do ask your doctor for your complete ranges.
My potassium was within the required range, as were phosphates and sodium, motivating me to stay disciplined with my diet.
However, I soon realised that maintaining these levels didn’t directly correlate making an improvement in my creatinine levels.
So how does one reduce it, if you are already a patient in CKD Stage 5?
Treatment options for stage 5 CKD
Stage 5 Chronic Kidney Disease (CKD), also known as end-stage renal disease (ESRD), means that the kidneys are functioning at less than 15% of their normal capacity. Here are the primary treatment options for managing this condition:
- Dialysis: This treatment helps to remove waste products and excess fluid from the blood when the kidneys can no longer perform these functions. There are two main types of dialysis:
- Haemodialysis: Blood is filtered through a machine outside the body.
- Peritoneal Dialysis: The lining of the abdomen (peritoneum) acts as a filter to clear waste from the blood.
- Kidney Transplant: This involves surgically placing a healthy kidney from a donor into the patient’s body. The new kidney takes over the work of the failed kidneys. Transplants can come from living or deceased donors.
- Conservative Management: For patients who choose not to undergo dialysis or a transplant, comprehensive conservative kidney care focuses on managing symptoms and maintaining quality of life. This includes:
- Symptom Management: Addressing symptoms like pain, nausea, and fatigue.
- Nutritional Support: Following a kidney-friendly diet to manage fluid, electrolyte, and waste levels.
- Emotional and Social Support: Providing psychological and social support to patients and their families.
- Medications: Various medications can help manage complications associated with CKD, such as high blood pressure, anaemia, and bone disease. These might include:
- Blood Pressure Medications: ACE inhibitors or angiotensin II receptor blockers.
- Erythropoiesis-Stimulating Agents: To treat anaemia.
- Phosphate Binders: To manage high phosphate levels.
- Lifestyle Changes: Making healthy lifestyle choices can help manage CKD and improve overall well-being. This includes:
- Dietary Adjustments: Reducing sodium, potassium, and phosphorus intake.
- Regular Exercise: Staying active to maintain overall health.
- Avoiding Smoking and Excessive Alcohol: These can further damage the kidneys.
Each patient’s treatment plan should be tailored to their specific needs and medical condition. It’s important to work closely with healthcare professionals to determine the best approach. 123
References:
1. www.kidneycareuk.org
2. www.kidney.org
3. www.nhs.uk
In my case, I had chosen conservative management (though I had no idea such a term existed back then). Indeed the heart transplant doctor who examined me turned me down for a transplant on the basis that my current lifestyle would be severely curtailed as a result of a transplant and I would not cope with that mentally. I think we (that’s me and the NHS) are proceeding along the lines of “just keep going for as long as you can”.
My own specialist has said approximately “look, everybody’s kidneys suffer wear and tear with age, and yours will too, but you don’t have much scope for wear and tear – just be aware”.
Conservative Care (for Kidney Failure)
Comprehensive conservative care can be the preferred form of treatment for those who have kidney failure ….. choose not to have dialysis treatment ..… (and)..… wish to let life progress naturally. …..(It) aims to keep you comfortable and provide you with a reasonable quality of life, while not artificially extending your life.
During comprehensive conservative care, you will be supported by a multidisciplinary team with medications, dietary advice and assistance to reduce the symptoms of your kidney disease. A palliative care team can also provide end-of-life support. 1
Comprehensive conservative care is planned holistic patient-centred care for patients with stage 5 CKD that includes: interventions to delay progression of kidney disease and minimize risk of adverse events or complications, shared decision making, active symptom management, detailed communication, including advance care planning, psychologic(al) support, social and family support and cultural and spiritual domains of care. 2
References:
1. Comprehensive conservative kidney care | Kidney Health Australia
2. Supportive Care: Comprehensive Conservative Care in End-Stage Kidney Disease – PMC
So what size of team have I got behind me?
- At present I see my kidney specialist once every 6 months, but she has stressed she is only a phone call away if I need her.
- I also see my own doctor after each set of blood tests roughly every 6 weeks, though if we have a concern we adjust something and reduce that timescale.
- I have a renal dietician. but I have not seen her for ages. She is also just a phone call away.
- And last but not least, PKB!!!
After October 2020 until November 2024
Please note that for sake of ease I’ve actually shown the entire creatinine progression from November 2020.
And during this period, I started to become aware that surviving this, for more than the days, weeks or months as numerous articles on the internet predicted, was becoming possible. And therefore there was another option to dialysis or a kidney transplant.
As the diagram shows, just recently the creatinine level is going in the wrong direction. I will holistically do everything I can to reverse that.
But why did I experience a spike back up to 404 μmol/L in March 2024 (left red arrow)?
The night before that reading, I tore a calf muscle, probably causing an influx of new muscle cells needing disposal of the old cells by my kidneys. By good fortune, I had a specialist’s appointment 3 days later and the blood tests were repeated. And that’s when my kidneys recorded their equal best ever of 347 μmol/L (blue line).
And why are the last 2 measurements slightly bucking the downward trend (right red arrow)? These readings were 2 weeks and 6 weeks after I started Amlodipine, but because the change is small, that could be irrelevant.
However, my results on 3rd March, 2025 reversed the upward trend and my kidneys recorded a 367 μmol/L.
After each blood test at my surgery or the Western General Hospital in Edinburgh, I await the email notifying me “your results have been updated.” Thanks to PKB, those results are available sometimes as quickly as 6 hours later.
Then I can analyse them and prepare for a meaningful discussion with my own doctor. This is such a massive difference from being told to phone for your results a week later and then being told something like “your results are stable” or perhaps “the doctor has noted that we need to watch your iron”.
My doctor knows that I do research and as a result our discussions are collaborative discussions about how to improve one or more of the test results, often through a tweak to my diet.
Blood pressure and Amlodipine
At my last appointment with my specialist we were in agreement that something needed to be done about my blood pressure (160+/100+ is dangerous and could easily harm some of the smallest blood vessels in the body; these occur in ones’ kidneys).
All the non-medical attempts I’d made over a four and a half month period were not working (e.g. running, isometrics, resistance training and the addition of many foods/drinks that “may improve” blood pressure had failed).
After expressing concerns about prescribed medications potentially harming my kidneys, we settled on a Calcium Channel Blocker (CCB) instead – Amlodipine.
PKB features
At present the following PKB features I find most useful are:
Home>scroll down to Notifications and then scroll down to View all for your latest test and previous results
Home>Health>Measurements>Blood Pressure (choices)
I follow these steps in PKB to set up my plans.
| Step 1 – Navigate to here. Step 2 – Click Add plan |  |
| Step 3 – Give the plan a name such as Exercise and Meals Plan. Step 4 – Click Add file. |  |
| Step 5 – Find the file on your computer you wish to attach and click Open. Your file will now appear like this. Scroll down, putting in a note if you wish, select which privacy setting is applicable, and click Add File. |  |
| Step 6 – You will now see your file on this screen |  |
Exercise Plan (this shows latest results)
| 24/11/24 | Stair Climb Isometrics | 30 storeys 8 x 3 reps/10kg | Sunday morning | |
| 23/11/24 | REST | |||
| 22/11/24 | Zumba Resistance Training | 17h30 – 18h15 15h30 – 17h00 | ||
| 21/11/24 | Pilates Zumba | 20h00 – 21h00 18h00 – 19h00 | ||
| 20/11/24 | Run | 3.5km | ||
| 19/11/24 | Zumba | 18h10 – 19h10 | ||
| 18/11/24 | Zumba | 18h10 – 19h10 | ||
| 17/11/24 | Stair Climb Isometrics | 30 storeys 8 x 3 reps/10kg | Sunday morning | |
| 16/11/24 | REST | |||
| 15/11/24 | Zumba | 17h30 – 18h15 | ||
| 14/11/24 | Pilates | 20h00 – 21h00 |
Meals Plan (will eventually cover breakfast, one main meal, snacks).
| BREAKFAST (daily) | ||
| Food or drink | Quantity | Reason |
| Pineapple Juice | 150ml | Contains vitamins B6, C, and thiamine, as well as manganese, copper, potassium, and magnesium |
| Beetroot Juice | 50ml | Beetroot juice contains nitrates, which your body converts to nitric oxide Nitric oxide relaxes blood vessels, which lowers blood pressure |
| Flax seeds (sprinkle on fruit or cereal) | 3gms | High in iron and magnesium |
| Chia seeds (as above) | 3gms | High in iron and magnesium |
| Pumpkin seeds (as above) | 3gms | High in iron and magnesium |
| Watermelon | 50gms + | Contains an amino acid that helps the body produce nitric oxide, which relaxes blood vessels; high in vitamins A and C, magnesium |
| Raspberries | 50gms | A good source of antioxidants, vitamin C, and dietary fibre |
| Blueberries | 50gms | Has a high content of antioxidants called anthocyanins, which can improve blood vessel function and potentially decrease systolic blood pressure |
| Red grapes | 50gms | The red pigmentation in grapes comes from a substance called flavonoids. These flavonoids help to reduce the risk of blood clots |
| Special K | 30gms | |
| Raisins | 30gms | Research has shown that incorporating raisins into the diet can lead to a noticeable decrease in blood pressure, particularly in individuals with prehypertension. |
| Oat milk | 100gms | May help lower blood pressure because they are high in fiber and contain beta-glucan, which can improve heart health |
| Boiled egg (about 5 days/week) | A good source of protein and the yolk contains vitamin D | |
| Seeded bread toasted (2 slices) | ||
| Croissant (about 2 days/week) | Bad for LDL cholesterol – high saturated fat content – reduce to 1/2 croissant | |
| Benecol (butter spread) | Can help lower cholesterol levels in people with chronic kidney disease (CKD). Benecol contains plant stanols and sterols, which can be used to lower cholesterol. | |
| Orange marmalade (about 2 days/week) | ||
| Hibiscus tea | 200-400ml | Might lower blood pressure by reducing calcium influx into vascular smooth muscle cells. |
Planning what to eat
These are the 3 main references I use. On 14th March, 2024 I had reached out to the BNF (British Nutritional Foundation) with a query about the third reference below and I was alerted to the existence of the reference directly below. https://www.gov.uk/government/publications/composition-of-foods-integrated-dataset-cofid –
It didn’t have everything I wanted but I noticed that their data was from many sources including the one below which I now also use.
The first two are complicated EXCEL sheets but with perseverance, what you want can be extracted and then discussed with your health professionals. Both tables have many more columns to the right and/or left of what’s shown here with details of vitamin content and much more.https://www.nutrition.org.uk/media/1z2ekndj/nutrition-requirements-update.pdf
And this is the chart that I’d originally stumbled on.
Returning to PKB
The action of recording within PKB what I am or am not achieving is an invaluable spur to make me keep trying to get out of CKD Stage 5.
I would never have done the research that I do without the incentive PKB gives me, with the features that it provides.
Reducing blood pressure
| How? | Comments (✔ or X) |
|---|---|
| Reduce salt intake | ✔ sodium level perfect |
| Eat a healthy balanced diet | ✔ can be further verified once meal plan checked by renal dietician |
| Reduce alcohol | ✔ I never drink alcohol |
| Stop smoking | ✔ I have never smoked |
| Lose weight | ✔ No need, I weigh 67kg |
| Drink less caffeine | ✔ I drink decaffeinated |
| Be active | X NHS guidelines were stopped due to several injuries – see plan above for new timetable |
| Drugs | Amlodipine started |
| Get a good night’s sleep | ✔ Even if I go to the toilet during the night, I fall asleep again very quickly |
| Get support (absolutely vital, you will be unlikely to succeed alone) | This may not be a relation; it needs to be someone who is in tune with your approach to managing your condition and has enough knowledge to discuss your PKB information with you. In this case it’s my Pilates teacher, who is also a sports therapist and soft tissue therapist. |
| Yoga or meditation | On the recommendation of my own doctor (both) and PKB’s cameraman Lloyd (meditation), I started both in February 2025. Early results show a small blood pressure improvement. |
Other actions
I’ve also decided to drink water just before going to bed so that I am awakened during the night to go to the toilet — believing this may stimulate my kidneys to work “night-shift” and remove (even if it’s just a little) more creatinine overnight.
I’ve discovered Ballygowan bottled water high in bicarbonate content, an essential component often lacking in poorly functioning kidneys, which allows me to reduce the number of sodium bicarbonate tablets I take.
5 years and counting (this applies to my kidney condition and the high blood pressure). As far as I can see, there are only 2 possibilities for me still being here on Planet Earth.
Either,
| Divine intervention or Doing everything that I’ve mentioned above holistically which in my mind means being able to look after these aspects of my life simultaneously – the emotional, the mental, the physical, the social and the spiritual. |
Some people may notice that “being able to” might be connected with the first point.
*Viewed best on desktop or rotated on mobile
PKB’s mission (simple, profound)
| Patients should | Has PKB done this for me? |
|---|---|
| Own their health information | Yes |
| Understand what it means | Yes. This really depends on the depth of understanding being talked about. With respect to blood test results, for example, I would say that it inspires you to do more research if you don’t feel you have enough details from PKB. Obviously from my text above and below, that’s exactly what I have done |
| Use this knowledge to make informed decisions alongside healthcare professionals | Yes. Meaningful decisions are now possible with health care professionals |
Has it done anything else for me?
✔ It has a Diary with a Journal section – I’ll use this to record my letters to my own doctor, at South Queensferry Medical Practice, my renal dietician, at Edinburgh Renal and my renal specialist also at Edinburgh Renal.
✔ Under Treatments and Library, I can add the useful links I have used in my research.
✔ Under Files, I can add the 4 files I received from the physiotherapist at South Queensferry Medical Practice, regarding exercises to help with my recently diagnosed spondylosis and similar advice on other conditions. Embarrassingly, the pain disappeared before I started the exercises.
By having patients who use PKB and as a result then do further research, this acts as a benefit to the NHS as patients are much more able to have detailed conversations about their condition. Additionally, they are much more likely to act more quickly, if they notice something changing in a particular condition, and are therefore more likely to seek NHS advice, before the condition worsens and becomes harder and more costly to treat.
PKB has made a huge contribution to my ability to live with my condition.
It has inspired me to dive deeper into research, and by being a more informed patient, I can have more useful conversations with my specialist and dietician in the Western General Hospital and my doctor and nurses in my local medical centre.
In conclusion.
This journey has been about living as normal a life as possible with PKB as an invaluable partner along the way.
