Welcome to our collection of patient stories – a series of experiences from patients and families. Thank you to all who kindly shared their stories with us. If you would like to share your patient story please email our support team.
2015 was a particularly difficult year. In June 2014, my 14 year old son was diagnosed with Nephrotic Syndrome, furthermore it unraveled that he had Focal Segmental Glomeroli Sclorosis (FSGS).
2015 was a particularly difficult year. In June 2014, my 14 year old son was diagnosed with Nephrotic Syndrome, furthermore it unraveled that he had Focal Segmental Glomeroli Sclorosis (FSGS). His disease was uncontrollable with no sign of it slowing down. We had weekly appointments in Bristol which was a 140 mile round trip for us with 2 younger children to consider. As a teenager entering the final year at senior school and the onslaught of GSCE’s, becoming ill on top and trying to understand the disease was tough to say the least. It impacted every part of all our lives.
The team at Bristol which included the outpatients team and ward staff of health care assistants, nurses, consultants, dieticians, psychologists, community nurses, student nurses and the renal social worker, were our safety net. Whilst in the early stages our focus was on the treatment and immediate issues, the future changes from children to adult care was worrying. From the perspective of a parent, I was worried that I would be excluded from everything. The first indication of this was when I was told that at 16 my son could consent to medical treatment which included operations without my involvement. This quite frankly scared me as there was already so much for him to take in, not withstanding all the other parts of life he had to cope with and adjust to.
The transition was discussed with the consultant and the psychologist in the weeks before but the switch over accelerated for us when we heard that our consultant was heading for Great Ormond Street. With the worries of getting to know a new consultant (we were to be placed under the care of a new consultant to the hospital despite our preference to be placed with one of the other consultant’s, all of who knew my son’s case well), we decided that the transition should be sped up, after all we knew the transition would be happening within the next six months it felt silly to get to know the new consultant and then change again. The hospital were fantastic at listening to our request to go under our local renal team rather than automatically switching to the team at Southmead in Bristol, although we did need to discuss whether Southhampton or Bristol was the better option for transplant. Thankfully the switch to Dorchester, which is a 25 minute drive for us, was smooth. We met our new consultant along with our out-going one and the community nurses and he was so supportive. He seemed to understand the need for both myself and my son to still have as much control as possible and still to this day, allows us this freedom, joking that we probably know more about the illness than him! I can honestly say we have never felt more supported. Whilst we did only have the one joint meeting (due to our consultant in children’s leaving) we felt at ease enough with him to just take the leap. At the second appointment he was pointing out the obvious to us “he’s as pale as my walls, we need to get him on dialysis and get him feeling better and then get a transplant”. Whilst this may seem the opposite of what a parent wants to hear, in our situation this was the best possible plan. The consultant handed me his mobile number and told me to ‘What’s App’ him day or night if I was worried or had questions. He reiterated this at every appointment. I’d never used ‘What’s App’ until then!
Due to my son’s impending 18th birthday, we needed to get him well enough to be listed for transplant under the children’s category so on my birthday in the January of 2016 he headed to theatre to have a line put in and the old PD line which was put in following an emergency dialysis episode a few months earlier, but only used for six days, removed. The next day he had his first hemodialysis session under the watchful eye of the consultant. We had monthly appointments now rather than weekly, but this was because he was now stable despite being at stage 5 of renal failure. The consultant was always keeping an eye out for my son. He ensured that in the transition he saw the renal counselor and that I was fully supported to. Whilst I was still cagey about the transition and my ability to be part of my son’s care once under adult services, I was reassured that I was still needed. I did have to learn to ask my son if he wanted me to come along to the appointments, which I was glad to say he did. I hadn’t realised how much I needed the team to and only as time went on, did I realise that I was beginning to fall apart and the hospital enabled me to have some counseling too.
As we had opted for Southmead to be our transplant center, we had an initial appointment with the transplant surgeon in the May of 2016. We met the transplant coordinators there (we had already been introduced to the transplant team at Dorchester who were as fantastic as our consultant), it was more terrifying for me meeting the Bristol team. I suppose it made it all real. By late May we still hadn’t had him listed and I was getting anxious as his birthday was a few moths away. I had heard of other families going to their initial appointments and being listed before us, so I did moan a bit!
On 14th June I rang to say I still had not heard about the listing but they told me he had been activated that day and that a letter was in the post. At 3:00am on the 15th June, less than 12 hours after my phone call to the transplant nurses, we had ‘The Call’, a donor kidney was available.
At about 10:00am our consultant was ringing to ask if it was true and that we were on our way for a transplant. He rang later that evening to check on everything and I’m sure he was also ringing the ward! My last call from him was at around midnight where I confirmed he had gone down for surgery. I cannot explain the feeling of support we had from him and knowing he was going the extra mile for us.
16 days later my son was back under the care of the team at Dorchester. Sadly things had not gone so well but we knew we were in the best hands and 100% trusted our consultant. A few months later I had a disagreement with all the other consultant’s on the next phase of treatment for my son who had now just turned 18. We were at the point of them wanting to remove his native kidneys. We had the anesthetist in front of us ‘prepping’ us for surgery the next day. I felt completely lost and knew my son was concerned to; he had had three major surgeries in the space of a year, was very weak and mentally rock bottom. The only thing I could do was ring our consultant, even though he was on a day off and ask his advise. I was so relieved when he agreed with us and that the surgery should not go ahead.
Weeks later my son decided to return to dialysis which our consultant fully supported. Once this was re-established and my son fit and healthy (all things considered), he arranged for the removal of the transplanted kidney as he knew that being on the anti rejection drugs was not helping him with his studies and life in general, it was not something we had considered as this was uncharted territory for us. Charlie, our consultant, our guide, and perhaps our living guardian angel has been an amazing support for us and made the transition the best it can be. I just hope that every one has a ‘Charlie’ like us.
Once a sufferer of Nephrotic Syndrome for 17 years, I have been in remission for 11 years now and have just started a family of my own with the birth of my little boy Trent.
Once a sufferer of Nephrotic Syndrome for 17 years, I have been in remission for 11 years now and have just started a family of my own with the birth of my little boy Trent. When I was 8 years old the doctors didn’t work out what was wrong until I was seriously ill. Luckily when I was admitted to hospital I responded very well to steroids and was in remission within a few weeks.
Sadly I did relapse 4 months later and then every month for the next few years. My relapsing never appeared to take on a set pattern and followed me into adulthood, despite often being told that I may grow out of it. Occasionally I would have three to six months clear and then out of the blue I would relapse which often led onto continuous relapses for months on end. At the age of 16 the doctors wanted to stop using the steroids as I needed a break from them so I would catch my last growth spurt. I was introduced to Cyclosporin A which I responded to for the next few years which kept me in remission and gave my body the break it needed.
I ended up being on the Cyclosporin for many years. My worst relapse was when I was 22 and steroids had to be reintroduced alongside the Cyclosporin to help with the remission. In 2006, the Cyclosporin was stopped. I had one more relapse in 2007 but since then I have been in remission. Over the following 5 years the doctors kept me on a very small dose of steroid to try to ease the body into stability. For a further 2 years the steroids were gradually weaned off until I was completely drug free.
Throughout my childhood and youth I didn’t let my NS hold me back. I had kept up my passion of dancing throughout and in 2009 began learning a partner dance called Lindy Hop, also known as Swing or Jitterbug. I met my now husband at one of the socials and together we run our own classes, dances and events. We began running social tea dances for charity and in 2011 I was reading the latest magazine from the British Kidney Patient Foundation and saw an article about NeST and the research they do. I was delighted to find this and wanted to help fund the research into this rare disease.
My son Dylan was three and a half when he was diagnosed with Minimal Change Nephrotic Syndrome.
My son Dylan was three and a half when he was diagnosed with Minimal Change Nephrotic Syndrome. We were fortunate that he was diagnosed quickly as he was seen by a paediatrician when we took him to hospital with oedema in his legs and torso one weekend. The doctor Recognised his symptoms as being suggestive of Nephrotic Syndrome due to their having been a diagnosis of another child with Nephrotic Syndrome the previous year. Dylan remained in hospital for six days due to the severity of his symptoms and was discharged when he began to respond to Prednisone with the agreement that he would return as a day patient to the ward.
Dylan had a tough year post diagnosis with numerous relapses and within a year he was classified as a steroid dependent frequent relapser. Dylan initially remained under the care of a Consultant Paediatrician at our local hospital who consulted with a Nephrologist at the nearest children’s hospital but he was later referred to see the nephrologist to discuss second line medications options to break his dependency. The decision was made for our son to have a course of oral Cyclophosphamide which enabled him to titrate off Prednisone for the first time. Dylan did relapse shortly after completing the course of Cyclophosphamide but he tapered off the Prednisone without any issues so his
Dependency on it was broken. Three months after Dylan finished the course of Cyclophosphamide he enrolled into the PREDNOS 2 trial which proved to be so effective for him that we continued to follow the protocol after he had completed the trial because he relapsed shortly after he finished the trial. Dylan is now ten years old and he is now three years into a medication free remission.
Thalia is a very happy, bubbly and energetic 6 years old girl. She was sadly diagnosed with Nephrotic Syndrome at the age of 3 after months of being told it’s an allergic reaction/hayfever.
Thalia is a very happy, bubbly and energetic 6 years old girl. She was sadly diagnosed with Nephrotic Syndrome at the age of 3 after months of being told it’s an allergic reaction/hayfever which she suffered from. Like many, very few GPs have encountered this rare kidney disease and are often misdiagnosed.
Thalia was rushed to A &E after our usual family GP who was coming back from maternity leave saw us leaving the surgery and asked how we were. I'll be forever grateful to her as she thought it may be NS, but only ever encountered one adult briefly in her whole career while she was training. Born prematurely and a twin, Thalia also suffers from other health issues. Since her NS diagnosis, she has had countless relapses and has tried Levamisole, Cyclophosphamide, Tacrolimus and MMF/Cellcept as well as being on daily dose of Prednisolone; yet is still having relapses which she has had lots of hospital trips and stays.
Nearly three years on since diagnosis, her mental health has suffered greatly and now sees a therapist on a regular basis. Thalia is very fortunate to have three sets of amazing medical teams at three different local hospitals who work well together to assist all her medical needs. The most challenging thing about having Nephrotic Syndrome is its unpredictability and how it affects the day to day of the whole family. The side effects of all the secondary line of medications as well as steroids have taken its toll too ranging from mood swings to insomnia.
Thalia doesn’t like taking her meds and almost everyday it is a battle and she just wants to be able to do things like her peers and her twin brother. Thalia loves school and gets upset when she has to miss out due to hospital appointments, or trips to A & E, or hospital stays, or being away from her twin brother Casey. Currently having another relapse, Thalia’s greatest fear is that she’ll need a new kidney one day. As her mum, I wish I could take it all away and let her be just a little girl enjoying her childhood. Thalia has found it very helpful attending NeST patient day, where she has met others like her so that she wouldn’t feel alone. She regularly fundraises for NeST alongside the family so that NeST researchers can make her kidneys better. Her favourite saying at the moment is that the storm will be over one day!