Hello. I am on a rolling 6 monthly face to face appointmentI found that my nephrologist was very helpful. The specialist is much more knowledgeable that the GP. So I would get your GP to refer you if this has not been done already. Best wishes B
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Hi Alison itâs aura here Iâm a fellow ckd stage 3b to 4 welcome to our family.im sorry to hear you donât have the support of your brother family and friends are everything and Iâm very lucky I have 2 amazing daughters who have been 9n my kidney journey with me every step of the way .But everyone on here can be your support and answer any questions you may have. They have been great listeners to me when I wobble or just need some advice.like you I gave a cat and sheâs a comfort too.so welcome Alison your not alone x
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Hi Deb, I was terrified about starting dialysis and also struggled with the idea of the fistula. I kept putting off starting the dialysis but now see that I would have benefitted much sooner if I had accepted the inevitable and just got on with it⌠which is I have to admit very much the benefit of hindsight. Whilst I would rather not had to endure any of it, once the fistula surgeries were completed and I was established with the dialysis, I can say that it is bearable. I only started in January this year on a twice weekly basis and remain at this. I feel ok after the sessions but then need to rest for the rest of the day as I am wiped out. The benefits are felt though on my non dialysis days were I feel much better than I did before starting it. Overall, I feel very grateful for the treatment and hope to be accepted for a transplant soon. Hope it works out well for you and try not to worry too much.
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Pleased you are getting on well with your dialysis. Are you doing this at home or at the kidney centre? I am interested in how people get on as I suspect that this is something that maybe closer for us than we think/hope. I suspect that any transplant is out of the question when we pass 80 or have other medical issues , as the surgery for us could be of questionable outcome, Nice to see you on here and please keep us âin the loopâ Best wishes B
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hi all,
im 38 and was diagnosed with stage 3a pkd in October 2025 looking for others with pkd who can share their stories
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Many thanks for your lovely reply. I am currently undertaking hospital dialysis at a satellite unit. Whilst it is good having the nurses to do everything for you as well as monitoring and all the cleaning etc, there are a number of things I struggle with and perhaps might be worth considering. I would have preferred home dialysis which would resolve most of my issues, but I am lucky as I am currently on a weight loss journey with mounjaro, putting me on the path to a possible kidney transplant. This will be my second transplant having already undergone a liver transplant almost 11 years ago, thanks to a deceased donor and the courage of his family.
If I do however need to be on dialysis long term then I will definitely pursue home dialysis and find a way to overcome the thought of inserting the canulas which is what the training should hopefully help with. The canula insertions by the nurses however do not bother me and are usually straightforward. I use the Elma lidocaine local anaesthetic (numbing) cream before leaving the house, provided by prescription and worth asking for. I did not know about it so my first canulas were inserted without which was absolutely fine.
I am grateful that dialysis is available to me but being in a hospital setting is uncomfortable for me as I have no control over the environment in relation to first and foremost, the chair bed provided causes me a great deal of pain and I have been denied access to a proper bed to resolve the situation and only offered paracetamol instead. I obviously declined this, preferring a non medicinal solution as makes much better sense. I also had to eventually source my own support cushion that I need to bring along with me as well as an additional pillow as each patient is only allocated 2, one of which supports your arm with the canulas. Additionally, the fluorescent lighting is harsh and cause me headaches. I had to purchase tinted glasses to help with this at my opticians. The lights are sometimes turned off once everybody is set up and there is natural daylight which is much better but depends on staffing. The unit can also be cold whereas if in your own home these issues are more under your own control. I take my own thick cosy blanket and wear sweatshirts with sleeve zip access purchased from Asda.
The dialysis unit is on the top floor of a building where the lift access is unreliable and breakdown occurs on a very regular basis. This is not only time consuming and inconvenient but does not help with infection control and worries me regarding fire safety issues and evacuation particularly for the less able bodied.
The unit also lacks privacy and my biggest concern is that patients with infectious conditions are not separated out or even required to wear masks. Given that I already have a compromised immune system, this worries me and I have already contracted a bad cold which I am now in my second week of.
Noise levels can also be an issue, for example a radio on, people talking and the noise from the machines. To help pass the time and block it out I watch a movie or a box set on my phone using my noise cancelling headphones or sometimes listen to music.
In the event of bad weather or feeling unwell I have been fortunate enough to remain at home and not venture out the house until now. However, now I have to get to the dialysis unit for 7am regardless which causes me some anxiety. Iâm usually admittedly there about 10 past as Iâm now connected last and have to wait until about 7:30 or 7:40am. Fortunately though the winter is just about over. The unit I need to go to at the moment takes me more than twice the length of time it would take me to get to my nearest one, which is ok going but can be difficult returning home after dialysis as I most often do not feel my best.
Lastly, I am in a fortunate situation as my husband is able to transport me to and from the hospital. Had the patient transport on offer not been a sharing situation then this would have been a preferred option. I am not keen on sharing due to having a compromised immune system and not keen on added time detouring to pick up other patients but more so the dropping off on the return journey. As I understand it they can also spend time waiting about to return home as need everyone to be ready to go at same time which is not always possible.
The foregoing is personal to me but I have to add that whilst itâs a challenge for my senses, I definitely feel better on my days off dialysis than I did before I started and attending the unit is bearable for now.
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Hi Rachel
I was diagnosed with PKD 24 yrs ago when I was 32 yrs old and pregnant having just been diagnosed with cysts on my liver which was the first thing picked up at a routine scan. It took some years after that to then be diagnosed with Polycystic Liver Disease. I endured years of having a very large liver and people thinking I was pregnant all of the time and me then trying to make them feel better about their understandable mistake and smiling meanwhile my soul slowly being crushed and trying to hide how bad I felt about it. I was constantly struggling to continue life as normal but physically it took its toll, I eventually could not walk and ended up a wheelchair user and needed an antidepressant as everything became too overwhelming for me. I thought there was nothing that could be done following a consultation with an unhelpful gastroenterologist who seemed more annoyed about being pursued by my GP. I was however fortunate enough to meet an amazing gastroenterologist who ultimately changed my life by referring me to the wonderful Transplant Unit in Edinburgh. This was following an emergency hospital admission for internal bleeding as a big cyst had burst and I was in a lot of pain. The transplant team in Edinburgh were amazing and thanks to my deceased donor and his family I was able to have a better quality of life after only waiting 11 months until my kidney function started to really deteriorate a couple of years ago. I am 55 yrs old and started dialysis January. Due to the medication I take for my liver transplant it can also affect the kidneys so I knew that this was going to happen. I have always been very private about my health and admittedly tried to get on with everything and trying to block out the whole PKD situation. I am trying to stay positive as I just keep thinking that my grandfather did not live long enough having died at 45 yrs of age with no dialysis available at that time having been a career soldier before and during the Second World War. My dad then died at age 43 in 1985 as a result of high blood pressure and cerebral haemorrhages caused by PKD and no beneficial treatments. He worked 7 days a week with no time to go the doctor despite severe headaches and collapsed onsite whilst working. This impacted me in my work life as I just always kept thinking that if I can get to work then Iâm ok which in hindsight was not the best approach as I often attended work being quite unwell when I really should not have.
Our PKD whilst the same label impacted each of us differently. My story is very different to theirs and dialysis keeps me going until hopefully one day a kidney transplant gives me the gift of life one more time.
All of our journeys are different I suppose but try to stay positive Rachel. I have had to just take everything one step at a time. Acceptance was a hard place for me to reach but I got there.
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Brilliant. I am so pleased that you have told your story. I am 80 and with an EGFr of 21 , which is not at all stable ,despite the efforts of my wife and I , and looks as if it may be be on the slide. Your experiences are giving me an insight into what may be around the corner, and it is the first time that I have appreciated the trials and tribulations of âhospitalâ based dialysis and will take all the points you make into consideration when we, my wife and I, attend a dialysis support day at our local hospital in June. I have always had mixed feelings about dialysis. My first was that I would take the conservative route, but that landed on stoney ground with my wife.Bless her. Of the other options , I was concerned about the amount of space required to store supplies at home and my ability to cope, travelling to the hospital at unearthly hours did not sit well either. I will start my list of questions for the support day. Thanks for your very comprehensive reply. Best Wishes B
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Hi Iâm Jean I was told 4 years ago that I have CKD but I had no advice or information on how to proceed. 5 weeks ago I had a telephone conversation with a doctor about my blood results and during the chat he asked what was happening about my CKD. I replied - nothing. He made an appointment to have a kidney scan. That was the first time I realised how bad things were. Consequently I googled and took on board changes that I had to make especially with diet. A few weeks ago I had a follow-up meeting at the surgery when I said how disappointed I was not informed about changes I could made four years ago. I have been trying to change my eating habits for about five weeks bearing in mind I also have type 2 diabetic caused having cysts on my pancreas removed. My scan shows cysts on my kidney I am 81 in June Regards Jean
I
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Hi Beanbag
I think it took me about 3yrs after I was at egfr 21 to get to the point of starting dialysis when my kidney function was at 4%. I am glad I could give you a bit of insight of things to consider. I really struggled with accepting what was happening and felt angry about having no control over it.
A wee positive note I forgot to add is that the staff at the unit I attend are great and the toast provided in the morning sessions is a welcome treat. There is also tea and biscuits on offer but I take my own decaf tea with oatmilk as do not take caffeine or drink cows milk as need to watch phosphate levels. I also skip the biscuits as desperately trying to lose weight so I can be accepted for transplant.
Good Luck in choosing what is right for you. It is great that you have your wife for support. I struggled with this as felt that it was just picking the best of what was not particularly good options. (Best of a bad bunch) However, because I wanted to be able to swim the fistula was what I picked. I needed 2 surgeries and going for another procedure next week to try and stretch the vein. If that does not work then they will try a stent. Remember, though if once you start something and you find it does not suit you can always chose something else. Would be interested to hear how things work out for you and what you eventually decide.
K
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Thanks, I will let you know how things progress Best wishes B
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Hi Jean. Nice to hear from you.I am on Empagliflozin It works by causing the kidneys to remove sugar through urine, and slows CKD progression. The additional benefit is that the removal of the sugar helps the Type 2 diabetes. I suggest a chat with your GP or Nephrologist. It sounds like you are doing all the right things regarding diet, which is not always easy with potassium being an undisclosed ingredient in many foods. Important that you keep hydrated. Scary times ! I am a year behind in age and it does not get any easier.At least you have friends on here. Best wishes B
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Hi. I am 71 and have had CKD for about 15yrs and been reasonably stable at stage 3b. Recently I had a significant drop in my eGFR and a significant hike in my creatine within a 4 wk period. From feeling fairly well despite having a urostomy and Prinzmetal Angina as well I now feel pretty grim most days - nausea, headaches, itching, fatigue, high BP, etc, you probably know the score. I am due to have further tests. Because this has happened within such a short period I am feeling a bit nervous about continuing deterioration in my scores and the implications for the future. I tell everyone I am fine and coping but having had lifelong health challenges this feels like one more blow . Itâs probably because I am so tired but finding it difficult to feel positive. Itâs good to be on this forum and read how others are coping.
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Hello Sue, I think that the ups and downs of your EFGr are just part of the journey, Mine were all over the place for a time about 3 years ago, but now seem to have settled into a more gentle decline. As to your general well being, I get the nausea , feel a bit wobbly on my legs and have the occasional headache. My itching has largely subsided due the use of Eurax Cream with Crotamiton .This is available over the counter at Boots near me, and one application lasts a couple of days. A course of Ramipril has cured my high blood pressure and I have been on these for years, with no apparent negative effects. I think we all feel a bit grim from time to time.Write down a few questions for your next visit to your GP or Nephrologist, If they can sort out some of your problems some of the others may go away and your sprits will lift. You are on the right place here , Best Wishes B
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Hi everyone
I am 42 and got diagnosed with CKD stage 3a at 40. I also have hypertension, and ADHD. Being neurodivergent maintaining healthy habits can be a bit of a challenge, but until 6 months ago I managed to keep my kidney levels stable with diet. Recently it has gotten worse and close to stage 3b and a bit concerned as Iâm still quite young. Hoping to be able to learn in this community from others on similar situation!
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Hello, Welcome here. You have come to the right place. I cannot help much as I am nearly twice your age, but. I am sure many can, Best Wishes B
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Hi @Aura! Welcome to Kidney Community 
I am so sorry to hear youâre feeling down and having wobbles, but youâre only human and your thoughts and feelings are absolutely valid. What has been wonderful is to see you connect with fellow Kidney Community users over the past few days as knowing youâre not alone is sometimes just the boost you need (and cuddles from your cat will certainly help too) 
.
Brogan
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Hi @Colint! Huge warm welcome to Kidney Community.
Thank you so much for sharing your kidney connection and what youâve been going through .
Sounds like your pup is the ideal companion to get you through those tricky days. What type of dog do you have? I have a German Shepherd called McCoy⌠although he more identifies as a teddy bear heâs that big and fluffy 
.
Brogan
Hi @Geordie_Lass! So thrilled youâve joined Kidney Community. I hope you can find comfort here knowing youâre not alone in your kidney journey.
I too am based in the North East and canât wait for summer to roll around to make use of the amazing coast line and beaches here. I also have a black cat called Raven, what type of cat do you have?
Brogan
Hi.
thank you so much for sharing your story with me.
I will pray for you that you find a suitable transplant donor soon.
always hear to talk if you need it xx
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