By Nick Jones - Father to Recipient, Matt
You really are what you eat. Let me tell you a story to show you what I mean.
Preparing for an overseas vacation can be complicated anyway, but when you have a teenage son on peritoneal dialysis it becomes a whole lot more complicated. Our clinical team were fantastic though and they helped us to prepare for the trip some months before we were due to travel. It was the summer of 2018 and we were traveling to the United Kingdom (UK) for a much-needed two-week vacation. Flights booked, accommodation arranged (staying with family) now we just need our final pre-travel consult for Matt with his nephrologist.
Just One Thing
Though Matt was not thriving on dialysis, his consultant had been optimizing his peritoneal dialysis (PD) parameters and was happy about his condition from most aspects. Trouble was that his phosphate levels had risen again – up to a dangerous level of 8.9 - and she advised that we had exhausted our options with his PD regime. “There’s not much more we can do on PD, I’m afraid Matt will have to go on to Hemodialysis.” It got worse. “If you like, I think we can arrange for Matt to get dialysis in the UK but we need to move quickly with an access point.” The color drained from Matt’s face. From all our faces. This wasn’t the vacation we were planning. “Or we could leave it until you get back – it’s up to you”. A big relief for mum and dad but not so much for Matt. He had never wanted to go on hemodialysis (HD) and he wasn’t changing his mind now.
Matt is 18 now and had lost his Kidney function due to a very rare autoimmune disease called DDD. There is no cure for DDD but there are a couple of very promising clinical trials and the plan was to keep Matt on dialysis for as long as practical until there were treatments available for his underlying condition. Otherwise there was a significant chance of recurrence. All this left us with some difficult decisions: do we try for transplant early – without the cover of treatment for the DDD; or do we switch to HD to put transplant back whilst those trials progressed. Apart from Matt not wanting to go onto HD, he was about to go into his senior year at High School and HD 3 days a week would play havoc with his schedule. One decision was easy, we would decide when we got back from vacation.
A trip to the Butchers
We were staying with my brother’s family in the UK, and in preparation for a cook-out we visited their favorite Butcher’s shop. As the father of a dialysis patient, struggling with nutrition – previously potassium, now phosphates – I always read the labels. I asked the butcher if he had any nutritional analysis for his burgers, sausages etc. Surprisingly he had a handout with all the ingredients, including all the preservatives. To my surprise there were no phosphates. None at all. Plenty of other nasties such as nitrates, but no phosphates.
A little research later and I was amazed to hear that the EU had banned the use of phosphates in most processed foods around 2014. There are still some exceptions, but on the whole, you don’t see phosphates on food labels in Europe.
An aside – It’s chicken, but not as we knew it
When we first moved to the US from the UK, we all noticed that chicken was just not the same. The texture was different, and the taste was different, but we put that down to different breeds or different feeds – we didn’t really think about it, but in the US, chicken felt artificial and less “meaty”. Well now we know why. US food producers pump chicken full of water, and to keep that water in, they use phosphates to bind it to the meat. The result (to our palates anyway) was over-plump and artificial.
To jump ahead slightly once we found organic chicken in the US, we realized that it is exactly like UK chicken, so the difference is entirely down to the additives.
Back in the USA
Two weeks later we travelled back to the USA and back to a Nephrologist consult to check on Matt and decide on how to move forward. Bloods first of course, as always. Whilst we were waiting, we explained to the nurse that we had been very careful whilst we were away and hoped his phosphates would be a little better thanks to the different food regulations. We didn’t expect much in all honesty though, so we were all really surprised to find Matt’s phosphate levels right back down to 5.8 (from 8.9).
Still above reference range of course, but that goes with the territory of dialysis.
Keep on going
So the obvious question was: Do we need to change to HD? “No – provided you can keep Matt’s phosphate levels around this kind of level we can stay on PD - no change required.” This was huge for us because it meant we could stay with plan A: keep Matt on dialysis whilst we waited for treatments to become available.
And with one exception (which was caused by some obvious food cheating) we kept Matt’s phosphorus down in the safe zone through better informed diet. Primarily through buying fresh produce, organic meat and preparing as much food as possible ourselves.
One of the surprising things to us is that whilst all renal teams are of course aware that processed foods contain too many preservatives - and phosphates in particular - nobody we have spoken to had realized the extent of the problem.
We have found US research which has measured the phosphate additives in normal US meals and found them to be equivalent to the maximum amount of phosphates which a dialysis patient should consume. That’s the additives alone, not including naturally occurring phosphates.
It is no wonder that patients struggle to keep their bloods at safe levels.
Phosphates and the US Food Industry
Phosphates are widely used in the US food industry, primarily to extend the shelf life of produce and keep it looking better. They would claim it improves quality, but really it is about shelf life and cosmetics.
Phosphates keep red meat looking red for longer.
Phosphates helps bind the water they pump into Chicken to make it look plump.
Much simpler to buy fresh and eat fresh.
Keep it Fresh
Because the US food industry adds in so many phosphates to preserve sales and shelf life, the simplest answer is to buy fresh produce and prepare as much of your own food as possible.
The USDA Organic label means that most phosphates are banned. There are some exceptions for naturally occurring phosphates, but on the whole USDA Organic is phosphate free. (or very low)
USDA Organic can be expensive though and we certainly didn’t look for everything with an Organic label. We just focused on meat as that seems to have the most additives. USDA Organic Chicken at Costco for example is about twice the price of non-organic chicken, but because we were focused on Organic only for meat our overall grocery bill did not go up that much.
No added preservatives
USDA Organic isn’t the only answer either. We had a couple of stores in Iowa City who had locally sourced food which was guaranteed free from preservatives and other additives. This is generally more affordable than the USDA Organic foods but still avoid the dreaded phosphates.
Plan A did not last forever, but it did not fail because of phosphates which stayed in the OK range as long as Matt was on dialysis. Unfortunately, as well from struggling with his phosphates, Matt was not thriving in other ways. With promising news from the clinical trials, we went ahead with transplant and Matt had a successful Kidney transplant on November 30th 2018. At the time I am writing, he is 7 months post-transplant, much more like a normal teenager and with no signs of recurrence – so far at least.
Plan A may have worked though because we heard recently that there is a treatment from Novartis undergoing final protocols for post-transplant trials for DDD patients.
So should Matt show signs of recurrence, we believe that we can get the supportive treatment he needs. Of course, we hope we never need to go there.
The prevalence of phosphorus-containing food additives in top-selling foods in grocery stores.
Phosphate additives in Chicken banned elsewhere
Up to 70% of US foods have phosphates