Hello everyone.

Another busy week with planning for Neck Line, Arm Scan and a new job!

First things first, financial support when you have Chronic Kidney Disease. It's a huge topic, and as you can imagine, creates stress, worry and anxiety.

I was made redundant at the end of December last year and up until now have relied on my redundancy package to pay the bills. Well, my time is up and money has run out. Thankfully, I start a new 11/05/26. Whilst this is a relief, it does create it's own problems. The job involves not only working 0800-1600hrs, 5 days a week, but also involves a commute of approximately 50 miles each way per day (Gateshead to Hartlepool, 500 miles a week). 

So my Mondays, Wednesdays anf Friday will consist of:

• 0630-0800hrs - Commuting

• 0800-1600hrs - Work

• 1600-1730hrs - Commuting

• 1800-2300hrs - Dialysis

• Total = 16.5hr days

I have to be honest, this is going to be really tough for me given my tiredness/fatigue and I'm not too sure how long I'll be able to keep this up! But as a ginger haired warbler once said "money's too tight to mention". As always, I'll keep you updated on how I manage this.

The main problem is that there is little support for people with CKD. PIP claims centre around physical and mental capacity. Now, I can get dressed myself, I can walk and I can navigate so I cannot claim for this.

Other than job seekers allowance (with a slight enhancement for CKD), this does not even come close to covering bills and expenses so I'm concerned into taking employment where I can find it and struggle on through.

27/04/26 - 100.8 - 98.2 - 2.6kgs loss (Monday) - Single Needle

Overloaded from a busy weekend celebrating my 25th Wedding Anniversary, so the result is a tough week losing all the fluid. Not that I drank excessively, I only had three G&T's!

Received a call this afternoon from the Access Team who confirmed I am booked in for the Neck Line insertion next Wednesday, followed by my usual dialysis session at the hospital. This is to ensure all is well and the Neck Line is working. Quite a rapid turnaround as my appointment was Friday morning.

Learn more about the procedure here: https://www.kidney.org.uk/dialysis-line-insertion

29/04/26 - 99.0 - 97.60 - 2.3kgs loss (Wednesday) - Single Needle

Another slightly overloaded session. I must stop having excessive cups of Tea and get back on my three a day limit. Still single needle and on Friday I having a Transonic scan (Left Arm to) to calculate my flow rate so this should be the last time I have two needles.

01/05/26 - 98.9 - 97.00 - 1.9kgs loss (Friday) - Single Needle

Transonic Test - HD03 Haemodialysis Monitor

This is s not happen as the Hospital had decided that this would be a waste of time as I'm heading down an alternative route.

Till next time.

Take care

Stephen

Image Credit: Designed by Freepik

Hello everyone.

Well, it appears that Friday's are not the best days for some reason.

At my session last night, the most experienced Nurse at the centre could not get the correct flow of blood from my Fistula. Despite her best attemtps including two seperate attempts on my lower needle site, my Fistula would simply not give enough blood to complete a full session (and achieve the correct clearance of toxins).

So, another day on Single needle at my Top site and from Monday, I shall be having longer needles used. This is mainly due to my arm being quite swollen and distended, more than likely as a result of the Blown Fistula last Friday. What fun...

Lets see what happens next week in the run up to my next Access Clinic on Friday (24th).

Till next time.

Take care

Stephen

Image Credit: Courtesy of Nipro Group

Hello everyone.

So I need to change my session this Monday (6th April) so I can attend a gig (Richard Ashcroft).

The logistics of doing this around Dialysis is not as easy as you would think.

Dialysis patients can't go more than 3 days without Dialysis so a little planning is required when you need some time off - Frequency 

For example, to accommodate my Monday night off (I am normally Monday, Wednesday and Friday each week), the following schedule this weekend has to take place:

Friday - 03/04/26 - 1800-2300 - Normal session - 4hrs

Saturday - 04/04/26 - 1300-1500 - Additional session - 2hrs

Tuesday - 07/04/26 - 1300-1800 - Monday catch-up session - 4hrs

Wednesday - 08/04/26 - 1800-2100 - Interim session - 3hrs

Friday - 10/04/26 - Normal schedule continues - 4hrs

The reason for the part-sessions and interim session is to keep my clearances topped up, but, making sure I don't "over-dialyse" as this can also cause problems.

Also, a picture of my arm at the moment, which, whist still quite sore, is a great improvement on what is was a few months ago.

Take care

Stephen

Image Credit: Designed by Freepik

As you probably seen on some of my posts, the machine that filters my blood is large, complicated and let's face it, expensive (around £60k to £80k each).

In my post on the 11/02/26 (web site link here: Living with CKD website), you can see in the bottom right of the picture, a large blood filled tube. Well, find out what this is and what is does by reading on.

The blood is filtered through this device every session and the Dialysis machine circulates at 350ml per minute. Depending on your health the blood can look bright Red or Dark Red and this is down to the personal circumstances of the patient.

If you're interested in learning even more I have supplied a link to the brochure: ELISIO™-H Dialyzer (in Downloads at the bottom of the page).

Friday 13th.

Well, this week has been rough. Mornings have been very hard to get up age moving about. Thursday being particularly tough, feeling very unwell and nauseous.

This morning on the other hand, complete change and much better.

Monday and Wednesday I have suffered stenosis (narrowing of the vein) again and hoping this doesn't continue. Fistuloplasty to unblock an arteriovenous fistula - Having a fistuloplasty | Guy's and St Thomas' NHS Foundation Trust 

My monthly bloods after taken recently but no results have arrived in my inbox.

Only just over a month until I see the access team again to find out if they are going to create a new fistula in my Right Arm, what fun!

My weight has remained impressively consistent over the last 6 months and my "dry" weight is currently set to 98.0kgs. Anything over this weight is classified as excess fluid as is the target for each session of dialysis. Dry Weight explanation 

Till next time, take care.

Stephen

Weekly Update 19/01/36-25/01/26

Monday - 101.7/99.2 (-2.5)

Tuesday - 99.5/98.0 (-1.5)

Wednesday - 99.1/97.6 (-1.5)

Friday - 99.7/98.1 - (-1.6)

Monday, and as I'm 3.7kg over my dry weight and experienced some breathlessness in the last week, an additional will be requested to support me to lose fluid.

Tuesday, and an extra 2hr session to help improve water reduction as I’m not getting rid of enough (1400-1600hrs). This was purely a fluid reduction with no blood clearance. Pretty tiring, having 2ltrs taken in 2hrs.

Wednesday, and managed to get another early slot at 1300hrs. 0900hrs and had a phone call from my consultant recommending another fistulaplasty operation to protect my fistula from any other problems. Day and time to be provided in a non-urgent basis. Had a meeting with University of Ulster to contribute toward a study on patients on Haemodialysis and the access to decisions and how it affects me, my carers and my family. Mari-Louise McPeake - University of Ulster.

LINK

Thursday, and woke up feeling pretty rough and nauseous. Water intake is becoming a real problem so from next week, I’m going to try and track all my fluid intake.

Friday, and tonight went without event.

For once an uneventful set of dialysis sessions, but still a tough week with general day-today health and ongoing hospital interventions coming in due course.

Take care

Stephen 

Latest blood results are in the bad new continues.

Yet another drop in kidney function, with me losing two thirds of my kidney function in the last twelve months.

Even dialysis is now only improving my function up to half it was, meaning I'm tired, breathless and find physical activity rather strenuous.

On the up side, my arm is improving with very little redness or broken skin now which makes things a little easier.

Take care

Stephen

Arm swelling begins to reduce finally after my fistula failure and blood being distributed around my muscle mass. I was on single needle due to pain but Saturday night began two needles which came as a bit of a shock. Needle into swelling was very painful to say the least and I could feel the throbbing intensely during the session.

Mepitac (https://www.wound-care.co.uk/mepitac-tape.html) tape works a treat and I’m currently trying different lengths between 15cm to 12cm to try to get the most tape from each roll whilst maintaining enough tape that my needles are kept in place. Currently on 14cm. The staff approve of the tape as it can be used for closure and bandaging at the end which also saves tape.

Itching has now been greatly reduced using Fexofenadine at 180mg which is a great relief.

Take care

Stephen

For a number of months, I've been sailing through my sessions of four hours with ease, until today.

I had managed to somehow get a 0700hrs start so thought this would be a great start to the day, get home for midday and try and actually do something with the day. Little did I know what was about to happen.

30 mins into my session, my top needle built up so much pressure and then became blocked. My adjoining vein then "backed up" with blood and became extremely painful, my arm immediately became swollen and within 15 mins I was taken off dialysis. I cannot express enough the pain involved. 

Naturally, I came home not feeling any benefit of dialysis and was straight to bed. The images don't quite demonstrate the size of my arm.

As a result, I'm back in again tomorrow for another session to make up for today's mess.

Fingers crossed this goes a lot better.

A new low...

Hello again. I'm back after taking some time off to clear my head. A couple of months of bad health and generally not being in a good place to be on social media.

Anyway, since my last update, I've moved to a dialysis satellite site which is closer to home, Davita Centre (Team Valley). Settled in rather nicely. Managing a full four hours regularly now although skin on my arm is very unsettled now due to a new allergy to latex in the tape used to secure the needles.

My latest blood results (which detail pre and post dialysis levels) are not too good now which explains my current bad health and general grumpiness!

Also, and this is a big one, I am now extremely itchy and this is causing me no end of problems with all aspects of life. I have been prescribed Fexofenadine for this and hoping this will be available to me soon. Read more here: https://kidneycareuk.org/.../patient-info-itching-and.../

Anyway, hope you are all well and ready for the festive break.

Take care

Stephen

I only get must bloods taken monthly now and the results are shown to the left.

Figures demonstrate just how low my figures (or high as the case maybe) before and after dialysis.

Happily completing 4 hours consistently now with two needles and the full 350ml per minute through the dialysis machine.

My skin is suffering quite badly and is very itchy and very tough now.

Type: One Line (Top needle site)

Duration: 0730-1100 (210mins Planned) 

Needle Support: Emla Cream

Wet Weight: 97.7kgs

Dry Weight: 96.4kgs (1300ml) (Target - 1200ml)

Comments: Needle insertion was painless. There is a new pain in the NHS and it's called personal technology on full volume without headphones, very annoying. I used my Zippo hand warmer today to see if that helps at all. 180mins in and zero pain so far. 

The Bad News: It turns out I have Fistula Stenosis. I have a narrowing of at least 50% which causes a restriction of flow and therefore makes the area where the blood is trying to get through expand beyond its maximum size. Now require an operation to insert a stent to make this area larger. Not sure how long I will have to wait for this and therefore I continue on my current schedule. Absolutely gutted.

See link for full description https://www.guysandstthomas.nhs.uk/health-information/fistuloplasty

Music: Halina Rice - Elision, Kiasmos - II, GusGus - DanceOrama, Sono - Lost Lovers Hotel, Royksopp - True Electric

Type: One Line (Top needle site)

Duration: 0740-1110 (210mins) Planned and Actual

Needle Support: Emla Cream

Wet Weight: 97.9kgs

Dry Weight: 96.2kgs (1.7kgs/1700ml)

Comments: Absolutely no pain today whatsoever. Felt great throughout the whole session. I can't figure out why some days are so different to others.

I should expect a call from the access team in the next few days to begin investigation into my pain problem in my Fistula. Received a call this afternoon asking me to attend a Vascular Ultrasound appointment next Tuesday early evening.

Immediately after my session, I felt tired, but quite well in myself. Fast forward an hour and I had made it home, had a spot of lunch and was completely felled by tiredness. Came over me like a wave and had to a sleep. 

I'm running out of ideas for photos. There's only so many photos of my arm even I can put up with!

Diet - Not much to report other than my appetite has reduced significantly in the last two weeks.

Music: - Susanne Sundfør - Ten Love Songs. Halina Rice - Redux. GusGus - Arabian Horse, Royksopp - The Inevitable End.

Water Intake (1500ml Target)

300ml Tea

150ml Tea

300ml Lemonade

100ml Water

440ml Ale

Total: 1290ml

This is a brief video of the type of machine that I use during each session.

The sounds can be intimidating but don't be put off by this.

I don't particularly like blood or needles so I don't watch whilst this part but I can watch the machine when it's in full flow. The machine can track blood pressure a regular intervals during dialysis and can also monitor blood flow through each needle as well as a host of other functions.

More details are here: 6008 CAREsystem | Fresenius Medical Care 

You’ve all seen from my previous posts what’s happened in each session and the immediate outcomes. Now that I’ve completed my first week on dialysis, I thought it was worth sharing some reflections—and what lies ahead.

Perspective

First off, I’m reminded daily that I’m not as badly off as some others on the ward. I still walk unaided, I work full-time, and once in a while, I manage to have a life. That’s no small thing, and I’m grateful for it.

Reality Check 

Don’t be fooled by the images of people quietly hooked up to machines. That part? Honestly, that’s the easy bit. The hard part is getting to the clinic when you feel rubbish, convincing yourself you belong there even though you *look* fine, and wondering how you’ll bounce back after each session.

The Unknowns

What’s unsettling is how quickly things can take a turn—when a session doesn’t go as planned, when new tests are suddenly needed, and all of this while waiting for the phone call that might change everything: that an organ is available, and it’s a match.

It’s a Slow Climb

You won’t feel better straight away. I’m a week in, and still feeling pretty ropey. It’s a process.

A Bit of Advice

Try not to plan too much early on. The first couple of weeks are unpredictable things shift fast, and choices get made quickly. Let those days settle. Rest when you can. Listen, take notes if you need to, and go over things after each session so you’re better prepared to ask questions next time.

A Bit of Levity

You’ll start getting weirdly into the numbers—blood pressure readings, stats, blood colour. Watching your blood leave your body, get cleaned, and return to you? That’s surreal—but oddly calming. Bring something to keep your mind busy. My wife and I play “Solitaire Sudden Death” to pass the time (and stay competitive).

Image Credit: Designed by Freepik

Type: Single Line

Duration: 180 minutes

Needle Support: Emla Cream (60 minutes prior)

Wet Weight: 97.7 kgs

Dry Weight: 97.0 kgs

Good and fairly painless session, although quite tired afterwards.

Black Circle above needle site indicates where the second needle will be placed on Friday. Emla being applied here also!

That's it, Dialysis has finally caught up with me.

My scheduled appointment on Wednesday last week was what I expected. Normal appointment, Height, Weight and Blood Pressure (142/81) but on this occasion, no Consultant meeting. Instead, a meeting with Lisa (Transplant Co-ordinator). A breif chat resulted in us agreeing that Dialysis was necessary. I was told I would be called either Wednesday afternoon, or Thursday.  The call arrived on Thursday morning and after reviewing my details my first dialysis session was booked for 0900hrs on Monday (16/06/25).

As you would expect, lots of thoughts, emotions and a little nervousness of what is to come.  I'll no longer attend the clinic I have been visiting for the last 18years which in itself is quite a change. Like most healthcare staff you see regularly, you get used to people and they get used to you. So, a big shout out to the Renal Outpatients department at the Freeman Hospital for all the work and support you have given me.

Now, moving on, my posts will now details the processes, procedures and of course, feelings of being on dialysis. Not sure how long I will be dialysing but hoping it's not too long as June 9th marked 40months on the Transplant list!

I may have to wait some time as I am O+ blood group, meaning I can only have an O+ donation.

Lots to think over and I have to be honest, this last 10 weeks (of feeling very unwell)  and now starting dialysis has happened all very quickly.

As always, I'll keep you updated here as well as across the social platforms (above).

More thoughts to come I'm sure.

Take care

Stephen

The Magic Number? Not So magic...

It's happened. it's here. it's now. 

I've spent years hovering around 11% eGFR and as you know (from previous posts on my Facebook page) this has been the hardest of times, being stuck in limbo.

My latest test results (results page) came in overnight I've finally dropped below the mystical 10% eGFR (which I have always been told was the magic number that I needed to hit before dialysis would begin).

Not sure what to think yet, as this marks a new era of my long term condition and further discussion will be taking place next week with my Consultant to decide the frequency of Dialysis (I've been told this could start off with once a week).

Still processing these results, so further thoughts will come in due course.

Take care

Stephen

Image Credit: Designed by Freepik

Thursday evening and after two days at work this week (Wednesday and Thursday), I’m still struggling.

Chronically tired, feeling sick and feet are really causing some discomfort. Skin tight, bloated and painful to the touch. Living in flip flops at the moment. I’m in Furosemide at the moment but it doesn’t seem to be working for the moment.

Really keen to get to my next scheduled appointment to see what my bloods show.

As always, take care all.

Stephen

(This was an original post from my Facebook page - www.fb.me/livingwithckd)

One of the hardest things of having a LTC? Holidays.

Not behind able to go away, listening to people talking about going away, being ill when you have a holiday weekend.....

I'm happy for you if you're going away but not being able to is crippling. Being unwell during bank holiday, ruins the weekend for others and myself. Worrying about an upcoming weekend of festivities, knowing that I could be unwell. It's a constant, all consuming and thoroughly depressing.

If I make plans and cancel, it's nothing personal, it's just me. I can't control what my body does.

Those people in a similar situation will understand the point I'm trying to make.

Stay strong people....

Cheers

Stephen

Back with a vengeance. Swollen ankles and hands. Its been a good while since my ankles have been a) swollen and b) this tender.

Clearly too much Salt from something I've eaten.

Night in bed with my feet up and plenty water to try and flush my system.

For nearly a week now I've had swollen feet and dispite taking Furosemide daily (80mg), no progress is being made in the reduction of the swelling. I'll give it another couple of days before increasing my dosage. I'm currently working from home with my feet up for a time to try and provide some relief.

...since I last posted.

Been a busy few weeks feeling under the weather and generally crap. Add to this my Mother is now significantly unwell due to Cancer,  it's just a bit much.

I'm in the process of improving the website and soon I'll have a page dedicated to blood results and I'll  try to backdate these.

Anyway, scheduled Renal Outpatients appointment this Friday so I'll update you all the results of this in the next few days.

Cheers

Stephen