Kidney disease, eating and cooking

Living with kidney disease, means that eating food can become a bit of a chore and a bit of  a hassle and cooking is even more of a challenge. I had many restrictions of what I could eat and drink, my main restriction was I was only allowed 1 litre of fluid a day. That was very difficult because I was constantly thirsty. The other main restriction was that I couldn't eat salt because that would make me more thirsty and I would retain fluid which would have to be taken off during dialysis, but keeping the balance right was difficult and any extra fluid go on our lungs or heart which give us shortness of breath. This could cause a lot of issues and make you awful as well as be dangerous.

The worst thing about kidney disease is that we would not be allowed to eat certain food such as, tomatoes, avacardos, bananas, chocolate, coffee, raw veg, dried fruit, nuts, mushrooms, exotic fruit, potatoes, marmite, hot chocolate,kidney beans, baked beans, pulses and sauces with high salt. Other veg had to be boiled to reduce the potassium and also reduced phosphates, cheese, milk, cola, seafood, processed food, pizza, ice cream, custard. I had also had to reduce my salt, so a lot of gravys and sauces where ruled out.

This means that cooking vegetables would have to be boiled and then cooked in a pan or roast them after but it mean a lot of the flavour and nutrients was lost. We had to cook a lot of our own food to limit all the restricted

We made home made food that was lower in the restrictions. This meal produced 4 portions. These worst part was not being able to eat most of the Christmas food, as most of it was restricted.

Life is very different now, I'm 26 days post transplant and all but a few restrictions have been lifted. I can't have grapefruit,pomegranate,star fruit, unpasteurised cheese, pate and smoked salmon. The first few days I couldn't decide what to eat. I think my first breakfast was a BLT, I hadn't had one in such a long time, it was delicious. Now cooking seems fun again and I can't wait to try a new recipe. It's going to be stuffed pumkin baked in the oven. Yes no carving pumpkins here it will be delicious!

foods.

My kidney disease diagnoses and where I am now

So where do I begin? So in 2012 I was working in an art gallery in a posh town, but I was commuting a long distance because we wanted to move back to the area my husband and grew up in. I managed to get a job in the area first and it was going well until I became ill at work, so I drove to my mums house because she still lived in the area and I felt to unwell to drive. That night I was in so much pain all I all I wanted to do was go to bed but I couldn't sleep because my back was in so much pain. I had to get up in the night to go to the bathroom, I noticed the toilet was just red. I screamed down to my mum and I just pointed to the toilet. She looked shocked and went and got some pain relief. We decided to call my doctor back up where I was living which is a 50 mile trip. I decided to drive back home and I said I would be OK for her to go to the Chelsea Flower show with my Aunty. So I drove back home but by the time I got back home I couldn't even stand. So my neighbour drove me round in her car to the doctors surgery. I was called in to the doctors office and I got out a urine sample I had done when I got home ( which was still bright red-basically just blood)  and put it on the desk and said that was my urine. The doctor looked shocked and tried to do my blood pressure, he looked puzzled and said this can't be right let me do it again. So he tested it again and got the same result so he got a different machine and again got the same result -250/200 approx. It kind of gets a bit fuzzy after that but I remember there being several doctors in there by the end and I remember saying "I really don't feel well." I remember they said they needed to print a letter and send me to the local hospital. The doctors said it would be quicker for my friend to take me than wait for an ambulance. So I got to the hospital but my friend had to go and pick her child up from school so I had to walk in by my self  with no idea what was wrong with me. I was put into a wheelchair because I was in so much pain I couldn't stand any more. I was wheeled round to A and E, where the nurse handed the doctors my letter and I waited there for what felt like an internity before being told to get on the bed. I called my hubby and he came straight from work, when he arrive he called my mum and we tx my work telling them I was in A and E, waiting to find out what was wrong. Little did we know how serious and near to dieing I really was. After what seemed like for ever and an uncomfortable situation having a catheter put in, a doctor came in and told me the scariest news I had heard "your kidneys have failed." I was so scared and burst into tears, the next few weeks were an emotional roller coaster. I then got moved up to a side room on a ward for about an hour before two paramedics walked in and told me that the Specialist Hospital wanted me at the specialist renal ward right away. So I was taken in the back of an ambulance to the Specialist Hospital and remember they kept saying to me to keep talking, I remember just feeling so tired I just wanted to sleep but the paramedic kept talking to me and then I heard the sirens go on to get through the traffic and then I remember I must be very ill.

Getting to the specialist Renal (kidney) hospital, the next bit was a bit fuzzy but I had an emergency neck line put in and the first night I was woken up every hour for them to take my vitals! I had dialysis through my neckline and I felt horrendous after and kinda went funny almost felt paralysed but I had lost control of my arms, they felt heavy, I did freak out but it was the equilibrium (the balance of all the electrolytes. It turned out my Creatine (toxic levels) were at 1000, normal levels are under 100. I was told about a year later I was about 24 hours away from dying, even now it makes me tear up-just how close i was to not being here, They also said they were surprised I was still standing when I walked into A and E. So I was in the Specialist Hospital for several weeks, I was there on my first wedding anniversary which I was allowed to go out for a meal with my husband and my parent in laws but I did have to be back the next day. I remember I still had my neckline in so I had to keep my scarf on so people didn't stare at me because I looked like I had a little antenna. It all feels a bit surreal now, I can't believe everything I been through. I never thought I would ever have it in me to be as brave and strong as I have been. Don't get me wrong there have been some days where I just wanted to cry but I would pick my self back up and dust my self off and start again.

Over the following weeks and months, I became more stable and then did training to do home dialysis. This is when I met my lovely friend who I did my dialysis training with. We became good friends and she then got a double kidney and pancreas transplant a few years before I got my call ( that's another blog.) So after missing all of the Jubilee Celebrations, most of the London Olympics and being sacked from my job at the Art Gallery (while I was in A and E-nearly dying) I went home to recover. I did manage to see one live London Olympic event but that was a bit of a disaster but I've already blogged about that so won't repeat my self.

I was off for a while, about 18 months I think in total from May 2012 to September 2013 . I think this was when I was out of work and decided that doing sales was not for me and being ill made me re-evaluate what I wanted to do with my life. Around the same time, in September 2012 my kidneys bounced back, they went from 5% back up to about 30% and I stayed stable for 2 years. So while I was stable I did go on a few holidays, Greece, Belgium, Hungary and the Croatia (when we moved to Dorset.)

(After that I did try and go on 4 other holidays but due to getting peritonitis I missed a cruise, Tenerife the flights were too expensive as it was so last minute, Cyprus from brother in law and sister in laws Wedding-I couldn't go because I got a massive clot in my arm from my elbow to my collar bone.)

While this was happening, I realised that when I was in the police (2007-2009) the best bit about my job that I enjoyed the most was working with the youths and doing youth initiatives. I decided I wanted to go into education but I knew looking at my CV that I wouldn't get a job with out any work experience or qualifications in that field. I decided to get a placement in a school by doing an apprenticeship. I called round loads of school but I got lots of no's. Eventually I got a yes and started my course in September 2013 and completed it a year later, summer 2014.

We then decided to try and move out of the area to the south coast to have a better quality of life for my health. We ended up moving to Dorset in the summer of 2014. So again I looked for a new job in the area and had been complaining to my kidney transplant friend, that nothing was happening and I was finding it difficult. Well that same day literally after that call, I got the call to say I had got the job I had gone to the interview for. So I started my job in September and then on around the 23rd December I was meant to have some regular blood tests done but my GP couldn't get any blood from me so he sent me to the local hospital to get bloods taken.

I had actually been to see Michael Buble concert in London that weekend and I had felt quite rough but still enjoyed it. We had Christmas hats on because we thought he would do all his Christmas songs-he only did a few.

 Little did I know that when I got sent to the hospital I would then be told that my kidneys had failed again and they were at 5% again. It was yet another shock, so yet again I had to have emergency necklines put in and yet more emergency dialysis. I then needed 7 blood transfusions because I was so anaemic that I was dangerously ill again, my haemoglobin was 5. I then needed 7 plasma exchanges (which each exchange had 15 bags of plasma) because my platelets were so low I wouldn't clot. It again was scary and a lot of uncertainty. I spent several weeks in hospital, through Christmas and New Year's Day. It was very hard and as I felt less ill I started to get bored. I was off for about 3 months recovering before I went back to work. I went back on to home dialysis but again it didn't work, I had several ops to try and sort it but in the end I got peritonitis and missed the cruise we were meant to be going on the follow day I ended up back in hospital! Around the same time I was put on the transplant list and then it was a case of waiting, doing dialysis 3 times a week in hospital and trying to live life as normally as possible! I was told it would be at least 3 years.......

The next blog is about my wait on the list and living as a normal life as possible and cooking food and what restrictions I had- it was no picnic.