At 60, or so I thought, I would be retiring from my public sector job and receiving my state pension. I would be financially free at 60 to choose how I spent my leisure time. 

How differently my life turned out. 

For a start, I took my pension early on health grounds when I did not have the energy or stamina to continue working. I had got to the point of settling with my life as it was and giving my body a well earned rest to relax and recuperate. The state pension age was raised to 66 so I would have to wait another 6 years to benefit from that. 

Finding out I had Polycystic Kidney Disease (PKD)  changed my perspective on life completely. 
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Why is being 60 so significant to me? 

​All of the information that can be accessed about the prognosis for PKD points to kidney failure by age 60 for 50% of people.  That means Dialysis for most and kidney transplantation when a match is found. If you are constantly being reminded of this then it can have a nocebo effect. By being told that your condition will only get worse is a negative suggestion to the body. The impact of this statement on its own, if you choose to believe it, creates the nocebo effect. This is when a person's belief that they will continue to get worse takes over. When the mind is engaged in negative suggestions that can damage the health this is called the nocebo effect. 
You may have heard of the 'placebo effect'. This is when patients in studies are selectively given a 'dummy drug'. Their beneficial effect is due to the patients belief in that treatment. In other words, the patient's belief that they are getting better is what heals them.

I am happy to say that at age 60 I still have enough useful kidney function. You see, when I was first diagnosed, my kidney specialist gave me the best possible medicine, hope. he planted a seed. He also gave me the belief that anything is possible. I am so grateful for the seed of hope and self belief that he planted. We all need something to remind us why we are here.  At my appointments this year, my function has been slowly improving and I celebrate every result. 

The last year has been the busiest I have been for a long time. I have been developing a course for people with PKD to give them hope and inspiration. The PKD Lifestyle course supports people with PKD to manage their life. I have shared my own strategies and tools that have given me hope and transformed my own health. As human beings we tend not to change anything until it becomes too uncomfortable to live with, until the pain is too great. The sadness, anger or fear is too much and we wake up and realise we are missing out on the life we wish to live.

I am so happy to celebrate my 60th birthday. I am grateful for all those who have supported me so far in my life. I may not be able to have the big 1920's party that I had originally planned. I am just grateful for being alive. 

Give yourself a purpose for living your life.
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#endPKD #hope #inspiration #Ichoosehealth

Exciting news! The new pkdlifestylemanagement.com  website will be live shortly

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We get vitamin D from the ultraviolet (UV) rays of the sun. The amount of UV rays absorbed depends on where you live, the time of day, the weather and if you are using sunscreen. 

Vitamin D is responsible for :

• Building and maintaining strong bones
• Keeping the right level of calcium and phosphorous in the blood
• preventing bones from becoming weak or malformed
• Preventing rickets in children and osteomalacia in adults

​We make vitamin D from cholesterol as a result of the ultraviolet radiation in sunlight hitting our skin. When this happens, the liver and the kidneys transform the vitamin D into a more active form, and this allows our cells to read DNA instructions more effectively.

Too much vitamin D can be toxic. This is because vitamin D is a fat-soluble vitamin. Fat- soluble vitamins have more potential for harm from excessive dosing than water-soluble vitamins. This is because water-soluble vitamins (B and C vitamins) are excreted by the kidneys, whereas the fat-soluble vitamins are stored in fat, where they can accumulate and reach excessively high levels.

It is not unusual for people with kidney failure to have low levels of vitamin D. Your doctor can check the level and suggest a supplement. Over the counter supplements may be harmful for people with chronic kidney disease, always consult your doctor for advice.


I received a copy of a letter sent to my General Practitioner following my renal appointment. Something that was mentioned didn't mean anything to me. Secondary Hyperparathyroidism. I since found out that  this is a sign that the kidneys are failing in their ability to activate vitamin D.

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Healthy kidneys are rich with vitamin D receptors and play a major role in turning vitamin D into its active form. This helps to balance calcium and phosphorous in your body by controlling absorption of these minerals from the food you eat and regulates parathyroid hormone (PTH).

When kidneys fail, their ability to activate vitamin D is lost. Without the activated vitamin D to control calcium and phosphorous levels in the blood, PTH will try to overcompensate and go out of range.

PTH is secreted by the parathyroid glands that are located in the neck near the thyroid glands. In kidney failure, the parathyroid glands may sense that there is not enough calcium in the blood and produce excess parathyroid hormone which tells the body to pull calcium out of the bones and put it into the bloodstream. This excess of PTH can cause secondary hyperparathyroidism. PTH levels are routinely monitored by nephrologists along with excess calcium in the bloodstream that can cause serious consequences. When the PTH is high, a doctor may prescribe an oral form of activated vitamin D to suppress PTH production. It is important for all kidney patients to keep phosphorous and calcium levels within a normal range. 

Does the skin produce enough vitamin D without involving the kidneys? This was my initial question that intrigued me to find an answer. Is a supplement or activated vitamin D the only option. It appears not. 

A  study ( vitamin D and UV  exposure in chronic kidney disease) in 2013 found:
From our results uremic skin is able to produce a sufficient amount of vitamin D3 which is metabolized in the liver to 25(OH)D or possibly by the skin and/or other organs and cells to both 25(OH)D and 1,25(OH)D2, then sending it into the circulation and stimulating the well-known positive protective effects in bone, blood pressure regulation, heart rate rhythmicity, as well as on muscle metabolism and physical capacity. From our data it can be recommended that intermittent suberythemal UVB exposure with a sun-simulation spectrum to treat and/or protect the vitamin D deficiency in chronic and end-stage kidney disease patients. We had found no (major) side effects from this therapy over the past 20 y. Therefore, regular outdoor sun exposure during summertime (April to September / October in latitudes > 45° N/S) and / or serial suberythemal sun-simulating UV-B irradiation should also be recommended as measures of prevention and treatment of patients with all stages of chronic kidney disease.

​www.ncbi.nlm.nih.gov/pmc/articles/PMC3897578/

This is definitely something to talk to your nephrologist about. The study also suggests that people with chronic kidney disease are often sun deprived. When you have enough sun exposure to get a slight pinking without getting sunburn on your face, arms, legs your skin will have made 20,000 International units of vitamin D. There are no reports of excessive levels of vitamin D from sun exposure. With the sun, you will make vitamin D in the most appropriate amount and with the most benefit.

​#polycystickidneydisease

For me, my world has not changed too much. It is at times like this you realise how comfortable you are with your own company, or not. I am calm and relaxed. All the deep inner work I have done over the last 18 months has been a lifesaver. In the past I would have panicked and worried about every little thing.

I meditate every day. I am grateful every day. I speak to others every day and keep connected.

The one big change for me is the need to distance myself from my parents  who live less than a mile away. So far, over the last week, I have been unable to see my Mum for Mother's Day and her 82nd birthday. We are in constant touch on the phone and have the occasional FaceTime chats but this still does not feel enough. 

There are some positives. I have not used my car for about a month. Not that I currently can as the battery has gone flat. I am doing all my shopping (and my parent's) on-line - that is when we can get the delivery slots. When I walk down onto the beach where I live it is quiet and you almost have it entirely to yourself. I have even made myself a throw for my living room by crocheting myself a blanket. I'm super proud of that. I spend time cooking myself a meal from a new recipe to excite me and inspire my taste buds. 

For some, being stuck inside can feel restricting. If you woke up alive today then you have at least one reason to be grateful. Look at the positives. Time to spend with your family, devising games to keep everyone entertained, spending quality time together. Some people will not have that chance again. There are so many new on-line resources being made available every day. Plenty of opportunities to take advantage of. 

If you live alone, like me, keep connected with others. Have that virtual lunch together, share a quiz on WhatsApp, Write down all your worries and celebrate the positives. Keep a routine. Get up, get dressed, have a plan for your day. See each day as an opportunity. 

​Above all, keep safe, stay home and cherish your loved ones from afar.

#polycystickidneydisease #keepingsafe 

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Imagine being at home for weeks and months on end having very little contact with the outside world? Just a short time ago this may have seemed a wild idea to you. The reality is, right now it is becoming something we are all having to adapt to. 
For me, I have experienced this disconnection many times in my life. 

When your health is in an unhappy place, as is the case with anyone with a chronic health condition, it can hit you like a ton of bricks. At times of having to pace yourself or symptoms that hold you back either temporarily or permanently, you are disconnected from your place of work and the social aspects of being with people all day. You are unable to easily maintain your regular meet ups with friends or relatives. You cannot easily shop for yourself. You cannot easily have trips to the theatre or go down to the local pub. You feel isolated. Sounds familiar?

I am not looking for sympathy here, I am not a victim. In this time of uncertainty and disconnection, take time to re-set and pause. Look at what is important to you. What you truly value. There are many amazing stories out there in the wider world where people are actually caring for others more. People are looking out for each other. Be kind to yourself, be kind to others and be kind to the planet. Our world  is already becoming cleaner and less polluted. 

For some, working at home is new to them. Not being able to go to the coffee shop, the gym or buy a new outfit at the weekend is new to them. We are naturally social butterflies. Think about donating what you normally spend to a charity that is supporting others. 

Keeping in a relaxed state keeps your immune system healthier. Even if you are medically immune suppressed or have an autoimmune disease, you will always benefit from your body being relaxed. Help and support the immune system and rebalance the stress hormones. Keep a good healthy diet, exercise and meditate. Have a bedtime routine that relaxes you. Write down what is worrying you before bed. Feed your cells and give them the environment to support you. You can't eat toilet rolls!

Its time to dust off those mediation downloads. Get out into the fresh air at a distance from others or in your garden if you are self isolating. Be selective about the news you access and try not to get caught up in the hype. Keep connected by WhatsApp, social media, phone, FaceTime, zoom, Skype. Above all, be kind to yourself and don't be afraid to ask for help from other people who love you.

#polycystickidneydisease #socialisolation
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Sue Jobson is a British health coach, healer and writer who inspires people with kidney disease to get their health, happiness and freedom back. Here she shares her story on how she adapted her life after an out-of-the-blue diagnosis with Polycystic Kidney Disease almost 30 years ago, and how she now helps others to adopt the best ways for preventing kidney disease.



There are moments in life when you feel so good you want to burst. Everything feels effortless. Then there are times that feel like you are wading through treacle. Things feel so bad as you spiral downwards into the pit of despair. It is during those dark hours you pray someone or something will rescue you despite the odds.  
​
At the hospital the neurologists were investigating me for Multiple Sclerosis, yet I walked away with a diagnosis of Polycystic Kidney Disease (PKD). 

​At the age of 32 my two young children were trying to cope with their Mothers failing health. I was devastated. I knew nothing about the condition and furthermore, it is supposed to be genetic. So, I had my parents tested and they were cleared. My condition was a spontaneous mutation. Apparently one in ten people have no known family history. At the time, information about PKD was not available at the click of a mouse. What was available was limited and only offered doom and gloom: kidney failure by the age of 60. I sat in the waiting room of the renal clinic at my local hospital awaiting my first appointment. Everybody there looked unwell, some struggling to mount the few steps leading to the waiting area. Nervously, I chatted to people. I was afraid of what I may learn. However, my experience that day shaped my reality.

The nephrologist I saw was a research scientist. He brilliantly explained what PKD was and the implications for my family. He took the time to listen to me. Up until then I had been clueless. I asked if this will limit my life span. He smiled and replied “Put it this way, I have patients in their 80s who still have useful kidney function”. I did not expect that. I could not have imagined that he had just given me the best medicine possible. Hope. He planted a seed. He also gave me the belief that anything is possible. To this day, I am grateful for the seed of hope and self-belief that he planted within me. Anytime those sneaky doubts rear their ugly head, the smiling face of my nephrologist comes to the front of my mind.
Despite both of my children being diagnosed with PKD, I am pleased to say they are in good health. They are now both in their thirties. Even though I was devastated to learn about the diagnosis, I am confident that my positive outlook and inspiration will support them. I am determined to do whatever I can to inspire people to attain their dreams. I have studied several healing modalities alongside my professional life. Very few people were aware of my own health challenges. I wouldn’t let anyone shake my belief that anything is possible and that there is always hope.

I dig deep into myself and explore any blockages that may hold me back from being healthy. I have changed my eating habits to one that ensures optimum health and vitality. My biggest dream is to give other people what my nephrologist gave to me: hope, self-belief and the inspiration to enjoy good health, happiness and freedom.

Although my body has PKD, I am still me. I choose to be the best version of me. I make the time to be conscious of my health and wellbeing.

In October 2020 I will be 60, yet I have so much more that I would like to achieve, and peoples’ lives I would like to transform.


Shared from a guest blog for World Kidney Day
https://www.worldkidneyday.org/getting-your-life-back-from-polycystic-kidney-disease/​

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​The weather here in the UK is currently a sizzling temperature as we bask in the mini heatwave.
Many of us fry ourselves in the sun soaking up Vitamin D and toasting our winter weary bodies a shade or two darker to seek that holiday tan look.

Spare a thought for the inside. That wonderful machine that is our body. Bravely carrying on with the process of keeping you alive. 

How much water to drink? Keeping the body hydrated can be a balancing act. Just to keep the body hydrated in normal weather conditions 1oz of water per 2lbs of bodyweight is needed each day. This needs to be increased during hot weather or when exercising. So if you are 140lbs, that's 70oz water, fruit or vegetable juice just to keep alive each day in winter. 

​Dehydration can occur when you do not drink enough water to keep your body tissues healthy. Sweating, vomiting or diarrhoea all remove water from the body. If you are thirsty then you are already dehydrated. The thirst response diminishes with age so if you are over 50 you may not recognise that you need hydrating so easily. A regular drink of water every half an hour during hot weather will keep your body functioning. It is easy to forget when you are having fun at a party or making the most of the long warm days. Always look in the loo, yes I said it! the darker your pee the more dehydrated you are. Healthy urine needs to look pale yellow. 

Eating predominately cooked foods leads to dehydration. Your body is using its energy to digest and process. During hot weather keep to a light diet of fresh fruits and salads to assist your body to stay hydrated. Maximise the healing power of nature for the body to function at optimal level.

Dehydration causes your creatinine to increase and this lowers the result of your kidney function.

High creatinine levels indicate that the kidneys may not be functioning properly. This means that they have a reduced ability to remove and excrete waste products from the bloodstream.
​
Pace yourself in hot weather, exercise minimally, eat healthily and lightly, enjoy the sunny days and keep your body hydrated.

#adpkd #chronickidneydisease #health #kidney #nephrology #pkd

If someone had said to me a year ago that I would be spending a few days in Norway with a group of people I hadn't even met yet, I would have laughed. Saying that, I have done nothing but laugh for the last few days. 
My health had been challenging me at times and I had settled on a relaxing life away from the hustle and bustle of fast paced existence.  I had isolated myself to such a degree that I spent many days alone.
I had lost my connections. 
My activities were limited to those that I had the courage to do and fear stopped me doing the rest. Fear of being away from medical support, fear of not being physically able to try something new, fear of an uncertain future.
The day I asked myself 'what is the worst thing that could happen?' was the moment my life re-opened again. 

In the book 'Connected' the authors talk about the power of your real social network, not your 'friends' on Facebook and other social media platforms. The average happiness level of the people in your life has a direct impact on your level of happiness. Even their friends friends will affect your happiness. Yes, that is people that you don't even know!
It makes sense to spend more quality time with those who can lift you up rather than drag you down.
 The fastest way to be happy is to be kind and loving towards others. When you are happy, aligned and abundant within yourself, you will enjoy harmonious health.
Over the last few days I have learned new skills, challenged myself physically, shared stories, slept little, meditated deeply and hugged a great amount. Don't let the fear of what you think may happen rule your life. The world is full of magical moments waiting to be experienced.


#ADPKD  #chronickidneydisease  #health  #kidney  #nephrology

What do my Renal Consultant and my hairdresser have in common?
They both inspired me to write this blog!

Last week I had an unexpected call from my Renal Consultant to request a repeat of my recent blood tests. During our conversation I had a lightbulb moment of realisation as he linked dehydration with the result of my creatinine level. I always went to my appointment straight from travelling up to London and definitely had less fluid that morning to limit my precarious trips to the loo on the coach. Honestly, you take your life in your hands! Dehydration causes your creatinine to increase and this lowers the result of your kidney function. Well, this was news to me. Interestingly, I can view all of my results going back several years and I noticed that on the days I travelled, the results were less positive.

A few days later I was chatting to my hairdresser and catching up on both of our lives. I shared that I was busy writing without going into too much detail. She then shared that she was following a vegan diet and I asked what led her to try that. "I have a problem with my kidneys" she said. Well, that's interesting, that's exactly what I am writing bout! I told her. We talked about creatinine, diet, hydration and I promised her a copy of my upcoming book. She is one of many who rely on internet information and find it completely overwhelming. I could see the tears starting to form as she talked about managing her condition. 

What is creatinine? 
Creatinine is a product of a breakdown of  creatine.  Creatine is used for skeletal muscle contraction and strength. Creatinine is excreted entirely by the kidneys and can be an indicator of kidney breakdown. Increased levels can be an indicator of inflammation of the kidneys, urinary obstructions, dehydration, CHF, diabetes, shock or trauma. Creatinine increases with muscle mass so men usually have higher levels than women.

How much water to drink? I recently found a helpful tip that suggested you drink 1oz of water for every 2lbs of body weight daily to keep hydrated. This will need to be increased if you exercise strenuously.

What  factors cause high creatinine levels?

• Dehydration or inadequate water intake
• Kidney problems
• Excessive blood loss
• Strenuous excercise
• Chronic diseases like kidney disease, diabetes, high blood presure and thyroid disorders
• Medications like ACE inhibitors, NSAIDs like ibuprofen and aspirin, chemotherapy
• Eating large amounts of meat, muscle building and taking creatine

Dandelion root can lower creatinine levels, flush out toxins, relieve swelling due to water retention and improve kidney function. In a study published in the Journal of Agriculture Food Chemicals, researchers found that participants who drank chamomile tea have decreased creatinine levels. Eating grapes are a great tonic as their phytochemicals bind into waste that the kidneys have trouble filtering.

Try drinking herbal tea instead of fizzy drinks and tea or coffee. Avoid eating dairy products, high protein foods and other dietary sources of creatine until your creatinine levels reduce. 

According to World Kidney Day, you should get your creatinine levels checked every year if you have type 2 diabetes or have had type 1 for more than 5 years. Diabetes is the leading cause of kidney failure. In many countries, half of all people starting dialysis have kidney failure caused by diabetes.

High creatinine levels indicate that the kidneys may not be functioning properly. This means that they have a reduced ability to remove and excrete waste products from the bloodstream. 

Eat healthy, be healthy, live healthy 

​#adpkd 
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