UK vs USA in relation to ckd treatment.

[Irelandy]

Hi all, I have noticed large differences in the way ckd is diagnosed and treated on both sides of the Atlantic. In the USA there seems to be much earlier detection and much more advice and treatment for the condition. I only found out recently that I have been at stage 4 for the last 5 years...I requested my medical records as I was going to see a Neph privately. When I finally got to see one on the NHS last September and I asked about diet...he just said to eat sensibly and don't get thirsty....no mention of Potassium, processed foods, salt, or drink plenty of water? Why should this be? Why did my doctor inform me of my deteriorating condition earlier when more could have been done to slow this down?

I would be very interested read of anyone else's opinion in relation to this.

Thanks and have a Happy Christmas.

[Zazzel]

Unfortunately, I think early detection is not addressed in either the US or UK. It really depends on the doctor. From my what I have read from my US friends, many of us had to point out the early signs of CKD to our GP and address it ourselves. Most of our lab results only show a less than or greater than 60 in the the US for GFR which means if we were in stage 2 of CKD it wouldn't even be addressed. It wasn't until it fell below 60 or stage 3 that we would even be notified - if then. Many weren't even told about it until they had GFR of 30 or 40.

I, myself, had a reading of 51 GFR and pointed it out to my doctor. My integrative doctor is quite good and had addressed many issues that other doctors had overlooked, but he didn't seem all that concerned with that number. It wasn't until I persisted and we had a urine test and discovered hematuria that I underwent more testing. Even then, I was sent to a urologist and spent over a year getting testing that route before being sent to a nephrologist.

My nephrologist, whom I consider one of the best in town, didn't give me any recommendations for diet. i think I brought up water, salt intake and red meat to her and she said to be sensible about it as both red meat and salt could cause high blood pressure which I needed to avoid. When asked about diet, she said there really weren't any dieticians she could recommend until I got into later stages of the disease. It was the holistic kidney doctor that I found online who really helped me with diet as well as with forums such as this.

Personally, I think the whole disease has been overlooked in comparison to cancer and other diseases. I feel your frustration. It's been very frustrating to say that least as it all seems like one big experiment.

[orangecity41 in reply to Zazzel]

I had similar situation on CKD being diagnosed. Agree probably depends on the Doctor. Have had declining eGFR for many years but was never addressed until I got a new Primary Doctor and was at level 3b.

I also think it has been an overlooked disease .

It can be frustrating. One has to be proactive.

[Grams70]

I agree with the response from Zazzel as posted below. I had my routine checkups every year and have a history of high blood pressure. I received contrast even though I had ckd stage 3a and then increase in a diuretic two days later that caused more damage to my kidneys. In reviewing my lab work I discovered my GFR was down below 60 for 4 years and I was never informed. I was referred to a nephrologist after the episode of receiving the contrast and diuretic but because I rebounded from GFR of 40 to GFR of 55 the nephrologist told me he would not see me again for a year and if he was busy I could have my appointment with his nurse practioner. I sure did not feel that I had much support and received no diet guidance so went to davita.com and followed their suggestions. I too have anxiety and I still struggle with anxiety one and half years later after being diagnosed with ckd. I am from the USA and I also feel that this disease is not addressed like others. The support from others on this site is very helpful and do provide guidance and you don’t feel so alone in trying to adjust and cope with ckd. Try to be positive and take one day at a time. You also have a Merry Christmas.

[lowraind]

One of the sites I have gone to stated that at the beginning of diagnosis there is money involved for all the testing, and later on, there is money involved for dialysis and/or transplant, but in the middle, there is not a lot of money involved, which is why, in the U.S., at least, there is not much help, support, etc.

[Irelandy]

Thanks for all your replies, I personally feel there is more awareness and diagnosis in the USA, most American posts show people find out at an earlier stage, a point where more can be done to slow the progress.

I also feel that in the UK doctors seem to be afraid to inform their patients, maybe because the financial implications or maybe out of a feeling of helplessness or impotence.

It would be good if we could start a campaign to raise awareness and concentrate minds and research into new ways of treating patients. Look at all the research going into cancer and the great strides that have been made. I've read that some people are looking at using stem cells to regenerate damaged kidneys. Any suggestions would be greatly appreciated

[ScoobyDoo910]

Here in the us for me, my son has had ckd for 16yrs. We have had huge ups and downs through the process. My problem is to many team memebers. My son has been vomiting for years since he was 12. No nausea just takes one bite of his food and vomits. Doesn't happen every day but does happen enough were it's hard for him to keep weight on. My x husband that has not been involved in taking care of his ckd got with the doctors here and called dhs for medical neglect. What a nightmare. Here the doctors of whom I took my son to for help and advice and kept taking him to for answers and because they failure to diagnose went after me. Instead of just saying idk could be the medicine ect, but we are going to try this and that ECT when I asked for a different doctor referral so my insurance could help and fresh eyes on the case well that didn't happening just got dhs up in roars more. 18 m later dhs has closed the case and still failure to diagnose. Doctors take an oath to do no harm well they in my experience do do harm. I think it does have something to do about the money. You have to do your own research and stick to your guns advocate for you. The thing I think doctors forget you are paying them to do a job and everybody's make up in there body is different to a point you are an individual so treat me like one not like oh this is normal you have nothing to worry about. To much power has been given to them they are not God and I wish they would go back to there oath and stop playing god. Help us like they swore to. It happens here and all over. You are not alone in this even though in my experience the doctors make us fill that way and helpless. But we are NOT alone.

[Beanbag5]

Largely because some people can hit a certain percentage/eGFR and it never changes again. They don’t want people to be worrying about something when there’s not a lot to worry about. At the end of the day people should be eating great, exercising and drinking plenty of water without CKD as a motivator.

It’s in our nature to worry and obsess over things like this , your doctor or nephrologist is always going to track your progression (if there is any). What I’ve learmt over time is you’ve just got to have faith in your team and if not convinced get a second opinion. In the intermittent, don’t panic and enjoy life.

[johngo]

UK is terrible, CKD warning/treatment should be at the same level as when they will not allow you to donate a kidney.

My advice to anyone is always get your kidney test results and check.

They won't refer you to a nephrologist until you are dead

Private in London is around £200-250 first appointment.