Hello Everyone, I get bouts of great savvyness with technology and other times great dimness,
and I couldn't find the New Topic button, but I'm also very persistent and so here I am!
I'm Frances Munro and my husband Mike is on dialysis, so I've travelled with him through all the twists and turns of urinary and kidney problems over the years. It started when we were living on the west coast of Scotland in the mid 80s, and continued to worsen when, in the late 90s/ early 00s living in the English Midlands, he also developed diabetes 2. We were doing aid runs to Croatia and Serbia with our small charity at that time, and I was getting worried where the health issues were going, because Mike was working full time, and our holidays were spent on aid runs.
I've been a spiritual healer for over 20 years and have been aware of the benefit of a healthy diet, but when your husband has impossible schedules with his work, and is eating hotel and motorway service food, you don't have much control over that. The situation eventually got serious enough that about seven years ago he lost his left kidney through infection from calcium kidney stones. Mike had been made redundant by now, and was almost pensionable age, so the stresses of the job had been released and also he was eating mostly home cooked food. I'd also gone veggie and although I cooked him fish and meat, he often chose what I was having.
Life ticked over fine after that although he was still making stones in his right kidney but they were softer. At least there were fewer hospital visits, and stays were short.
In 2015, we made a life changing decision and moved to Cantoria in Spain with not only the joy of acquiring 2 beautiful Spanish rescue dogs, a potentially lovely home, some immediate neighbours who have become friends and helpers through our dilemmas, but also enjoying all the great choices that a Mediterranean diet offers, with so much fresh produce. Our son, who's still in the UK, thought we were mad,
but he's used to us making strange choices, so accepted this one.
The Spanish health system took control of our health, as we are (physically although not mentally) of a certain age, and we concentrated on developing our previously neglected house into a lovely home with some sort of garden.
Fast forward to early 2018, and I was noticing changes in Mike. Less energy, less enthusiasm for life, sitting down where before he'd have been busy with the garden or stuff on the computer. Mike the bread maker was buying bread. That was unknown! It just wasn't weighing up right. Between April and August he spent over a month in hospital. The emergency ward in our local hospital, 30 minutes away, was seeing us too often, and then they would ambulance him down to Torrecardenas Hospital in Almeria, where they tried hard to get his creatinine level lower. The potassium was a bit high too. Almeria was an hour and a half each way so I was piling up the kilometres in the car. He was being well looked after, and I teased him that it was simply that he fancied Spanish nurses, but he denied it.
It was one morning last July when he suddenly said that he couldn't pass any urine. I called our neighbour and asked her to check on our dogs. As always she was supportive and said not to worry. I packed an overnight case for Mike. This time I knew he'd be staying in.
His body and particularly his right leg were swollen. They did their scans and set up the catheter. They couldn't tell if it was the stone in the kidney blocking its exit path, or whether the kidney had stopped working. The potassium level was way too high. We'd been used to dealing with oxalates but why this?
'Do you eat fruit?' was the question.
'Yes loads, it's healthy' was our answer.
'You must give up fruit especially oranges, bananas
and things like tomatoes, potatoes and anything else high in potassium. You only have one kidney so you'll probably be put on dialysis'.
Mike turned to me afterwards. 'I'm not going on dialysis.'
He was taken in an ambulance to Almeria and the days became long again as I started my trips over the mountains. It was the shortest route and the windy roads need so much concentration, they wiped the other issues out of my mind for a while, and gave me a break. Our neighbours rallied round and looked after our dogs so that was a worry out of the way, though I always got the look when I got home... 'Where's master?'
Well it wasn't a matter of 'if' and 'when'. Mike was put on dialysis. After a few days he started to feel better, and the fear of the unknown was gone. Our son Stewart and his fiancee made a surprise visit, and the timing was perfect because he came home the following day.
Once they went home, the healer side of me decided to investigate how I could help play our part in controlling Mike's potassium intake, but at the same time allow him to enjoy as varied a diet as possible.
I got onto my friend Mr. Google and started searching low potassium diet websites. The printer nearly overheated with all the information. The Spanish nephrologist had given us a guide too, so I studied all the options.
Avoid this. Leach that. Boil the goodness out of everything that's high in potassium and don't forget to throw away the cooking water so it's not used in sauces and soups. To be honest soups and casseroles weren't on the agenda any more because there was the severe limit on daily fluid intake. It's strange isn't it when you cross the border of 'Drink more water' and enter the 'Severely limited liquid zone'. Suddenly it's 'No you can't have a beer! Soup? Are you kidding?'
I tried leaching potatoes once, and boiling them to death. I'm not sure what they tasted of. It wasn't potato. I was pretty sure that as well as potassium, any other useful nutritional qualities had probably given up and left too, so what was left? A white mush! It was then I decided we had to do better.
I spent a long while with the charts listing food types, and made a note of the potassium levels in them all. Surely with a bit of juggling.....?
I found that an American university site had a potassium point system, which was easier to use to assess daily amounts. I got a list together and then we tried it out. A little of this, a bit of that, make a note of the points value, and soon we were eating a proper diet again. There was no more leaching or boiling. Vegetables are now steamed but I still throw away the vegetable water afterwards.
Mike restarted his bread making. He had much more energy nowadays. He even did a bit of gardening.
When he came home, Mike started dialysis 3 times a week at the Fresenius Clinic near our local hospital. They have been brilliant, really friendly and approachable. They know Mike is trying to improve his Spanish and between them they have some good Spanglish chats. I made the staff some chocolate truffles at Christmas as a 'thank you', and Mike made some homemade rolls. They've been so careful with his treatment and have been in constant contact with the nephrologist in Almeria. We can't fault them.
WE discussed peritoneal dialysis, but decided not to go ahead because neither of us was quite comfortable with the idea and we could work around the restrictions of 3 dialysis a week. Then one day in November they decided that twice a week was sufficient. The kidney had recovered a bit. Potassium was perfect, and because Mike had moved back to a bit more of veggie, poultry and fish diet, even the creatinine level was improved.
At the beginning of March we spent two nights on Spain's south coast to celebrate our 43rd wedding anniversary. The following week they started Mike on one dialysis session a week. For the first week he had the 'shouldn't I be somewhere?' feeling on the Monday and Friday, because dialysis day is now Wednesday, but Hey Ho.... it's great.
The low potassium diet is still doing its job, meanwhile Mike's enjoying controlled amounts of all types of food, even fruit and I'm happy because I know he's getting the goodness from them that he needs.
The long running Munro Team is almost up to full power again, but something important I learnt along the way is that just as Mike needed a low potassium diet, I still needed a full quota otherwise I'd go short and end up with other problems. We forget sometimes don't we?
I'm glad to be here on this site.
If I have a criticism of medical teams, it's that they don't put a label on what you're suffering from. Along the way, no one has ever referred to kidney disease, or even high potassium problems. It was only when we asked. I've had a similar issue.... I have glaucoma. No one told me, I just read the symptoms on a poster in the waiting room and then asked the specialist that I'd been going to see for 2 years about the high pressures in my eyes! Is it that they know so they assume you do? I can't work it out.
I have a blog which has a copy of the previously mentioned potassium chart, which some of you may find helpful if you have problems controlling potassium. It’s free to download. The link is as follows:
https://livingmeanssharing.blogspot.com/search/label/Potassium%20Points%20Chart
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