Tuesday, 21 July 2020

NHS shambles... but with a happy ending!



NHS incompetence:

Back in early June 2020, via an email to my GP, I requested a consultation with a NHS Dietition, re. a renal diet, after weeks of the Operation Shielding food parcels had left me with exacerbated creatinine levels.

At first I had my time wasted in a phone call from a weight watchers coach, who had no knowledge of the renal diet.

I contacted my GP again, by email.

I was sent a letter in early June 2020, re. an appointment for 21st July 2020, at 9am.

9 am came and went.

9.15 am I get a phone call from a woman, a general practise dietician, she tells me, who has no knowledge of the renal diet. She's only just read the GP letter and needs to refer my case to a colleague.

I'm assured that I'll be contacted later on this morning, and so I wait by the phone, till 1pm, because they are using my landline, claiming that my mobile number simply takes them to my voice mail, though no message is ever left to verify this, and though I phoned my mobile from my landline and all was well.

By 1pm, after 4 hrs by the phone, no return call ever comes. No text msg to say that no call will be forthcoming today.

What a shambles!

I'm disgusted by the NHS.

Thank God for 'Dr Google'!

Since May I've been able to do my own online research, re. the renal diet, and, thanks to delayed access to online food shopping, have been able to make dietary changes, in the interim.

If I was relying on the NHS, I'd probably be dead by now, or at least have irreversibly damaged kidneys.



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I was called after 1.15pm.

It was a call worth waiting for. Thankfully the dietician was excellent: knowledgeable, professional, well-versed re. my blood test results, etc.

She was very helpful!

My faith in the NHS has been restored.

I sent an email, thanking my GP for arranging the consultation.

But the dietician did say something very revealing.She said that GPs don't tell patients, early on, about their elevated creatinine level until it reaches beyond 140, because early intervention often has 2 negative outcomes: 

1. patients develop 'diet fatigue' and resort to old habits 
2. patients develop additional health probs through excessive adherence to renal diets, eg. cutting out protein all together. 

My response is that this is an unacceptable level of (racially biased?) low expectations about patients' ability to respond constructively. 
My response is that it should be a criminal offence to withhold medical information from patients, especially when, in the light of such information, patients make effective responses. 
eg. I went from 128 to 97 re. my creatinine levels, within a year, once I knew about the renal diet. 
The healthy level in to be under 90. 

Since the covid 19 lockdown, and the further internet-based info that I discovered, about the renal diet, I've made even further dietary changes and have had none of the chest pains that I was still experiencing in Jan 2020, when I had my last blood test. 

I seriously think there should be a major investigation / public inquiry into this situation. 
I don't believe that I'm the only one who has had this experience. 
The CKD forum that I follow on FB, make it clear that many people have had similar experiences. 
I think of poor mum, especially, dying before her 69th birthday. 
I think of all those black and asian people with kidney issues. 
How long had the GPs just sat back and watched the creatinine levels increasing, over 90, and not informing the patients. 
With me, it was over 10yrs!

Thank God I've been able to reduce my creatinine levels, and can feel the health benefits from doing so: 
No more chest pains during and after my 3 mile runs,
No more swollen ankles
No more heavy leg sensation, even when the ankles aren't swollen
No more tangy breath
No more excessive response to insect bites.
No more stinky sweat - I still sweat, but it is less pungent
No more excessive night time urination

Many on the FB forums can never lower their creatinine levels, no matter how strict their diets.
Too much damage has been done, over too many years, all because the GPs withheld crucial medical information.

Sunday, 12 July 2020

Creatinine & Long Distance Runs

I have been doing 3 or 4 three mile runs, per week, for 20 yrs.
I went from a 10 minute mile, to 3 miles in 43 mins.
I put it down to age and avoided runs if it was less than 0oC
and avoided runs if it was more than 18oC.

This meant some very early morning runs in the summers, to avoid the excessive heat.

However, last September (2019) I experienced lung probs re. running: a boiling/burning sensation while running, followed by stabbing chest pains, after running.

Blood tests suggest it was due to high creatinine levels.

I was 157. Healthy levels are 90 max.

I changed my diet and took 9 months off from runs.

On Friday 26th June 2020, I returned to 3x 3mile runs pwk.

All is now fine.

No burning sensation, while running.

No post-run stabbing pains in the chest.

If you, or anyone you know, experiences such pains,

get a blood test to check out your creatinine levels.

Early intervention could make all the difference.

Tuesday, 7 July 2020

The NHS is not your friend!



I'm looking for a forum re. black experiences of
seeking help – re. kidney issues -
and being ignored / fobbed off.
Anyone know of anything?

is there equality re. health outcomes of black people w/ kidney issues?


Is there equality re. early intervention given to black people?

Maybe I'm the only one to have received poor treatment.

Maybe, like the windrush scandal, it all adds up systemically. 

Disadvantaged by design.

Thursday, 2 July 2020

My Kidneys, the NHS & Me

@TheVoiceNews 
Given death rates, re. kidney disease, why not do a weekly column re. Black People & Kidney Disease.

The NHS should fund it.

Each week the column should feature a black person,

charting their history of kidney disease:

- symptoms

- diagnosis

- treatment

- prognosis

Wednesday, 17 June 2020

Kidney Disease Studies

good kidney disease studies available at 
https://pubmed.ncbi.nlm.nih.gov/32539044/

My Kidney Disease Journey


For over 10 yrs, my GP had known about my elevated creatinine levels and not told me a thing.
It was a locum who let it slip, during an appointment about my increased night time urination. 
I was getting up practically every 2hrs, needing to pee.

I insisted on a print out of every blood & urine test over that 10yr period, and ever since.
I was given NO dietary advice from my GP or from the kidney specialist that I saw last Sept.
They practically told to me to just carry on and not worry my silly little head about things, since CKD was not really a problem, unless my creatinine levels went beyond 140.
They gave me no advice as to how I was to ensure that the levels would no go above 140.

However I had learned to mistrust my GP and the NHS. 
I did my own research, online, about how to lower my creatinine scores.
I got a blood test every 3mths, to ensure that I was on the right track.

All was well, until this covid pandemic. 
I received a txt msg from the NHS, followed by a letter, telling me that I was clinically vulnerable to covid 19 an had to self-isolate.
This was news to me, given that I’d been told that CKD meant nothing to worry about.

Back to online research, where I found that CKD stage 3 meant impaired kidney function, by over 30%.
Neither my GP or the kidney specialist had ever mentioned this.

Operation Shielding meant living on food parcels. 
After 3wks on these foods, I was getting shin-bone cramps, itchy fingers & toes.

I did more online research and discovered a renal diet and information about potassium and phosphorus 
- neither of which had ever been mentioned by my GP, or by the kidney specialist.

I contacted my GP surgery for an appointment with a dietician and was contacted by a weightloss specialist with no knowledge of renal diets.
I have never had a weight problem. I am 5’ 10” and weigh around 10.5 st.  
I complained about this time wasting distraction and now have a telephone consultation lined up with a dietician, in late July,  

Meanwhile, I’d finally been able to get access to online shopping and so was no longer eating the food parcel items, all of which seemed designed to trigger and exacerbate CKD.

I feel APPALLED that I was given no dietary advice.
Since Sept 2017, when I was first made aware of being on CKD stage 3, I could have made a good recovery if I’d been told about potassium and phosphorus. 
Not knowing, I'd continued eating bananas, tomatoes, oatmeal, cooked broccoli, hot chocolate, all of which I have now cut out of my diet.

I’m an educated woman. If the NHS have been so negligent with me, I wonder how many other black people are similarly being denied the information they need to living healthier lives. 

Given the radical impact that dietary changes have had on my blood test results and on my well-being, how could health professional be pushing the idea that dietary interventions have no effect? 
Surely this is criminal?

How to Delay Kidney Disease Progression

Modifiable factors where interventions may delay progression of chronic kidney disease include 
- smoking cessation, 
- dietary advice, 
- hypertension (blood pressure) management, and 
- glycaemic (blood sugar) control 

see more at https://buff.ly/3fp67Ja