As a young boy, I had no idea how my life would change from carefree to hospital dependent. I was born with a disease that was not properly diagnosed until I was 7 years old. In those first seven years, my kidneys suffered damage.
Today, this is known as renal reflux: an abnormal flow of urine from the bladder back into the tubes (ureters) that connect the kidneys to the bladder, meaning there is a narrowing somewhere that is causing damage.
As a result, my kidneys were enlarged and damaged from the inside. I don’t know if the doctors were unaware of the symptoms at the time. I was just a kid learning what seven year olds do. In hindsight and from the little things I picked up from different people, I realize that I had a lot more coughs and colds than other kids and had a lot of urinary tract infections. As a child, you just take the drug and keep doing what you are doing – running with friends, playing football or cricket, climbing trees.
Only later in life do you realize that there were some problems that prevented me from having a childhood like others: constant medication and trips to the hospital for check-ups and examinations. Everything is checked. I did well in school and entered the world of work without too much trouble, but at 34 it was time for dialysis.
I first turned my attention to what is called peritoneal dialysis (PD), a type of dialysis in which the peritoneum in a person’s abdomen serves as a membrane through which fluids and solutes are exchanged with the blood by diffusion. It is used to remove excess fluid, correct electrolyte problems, and remove toxins.
I did this four times a day, and along with various medications that I had to take because my kidneys were not working properly, it worked very well. I did the exchange at breakfast, lunch at work, at tea time, and then before bed. I did this for about 12 months. I was lucky: I was called for the first transplant, which, as I then thought, would return me to the “normal world”.
Along with taking several anti-rejection drugs and frequent visits to the clinic, things went very well at first. This worked for about five years – the average life of a transplanted kidney is from five to 15 years, but some have less, some have more. Everyone reacts differently. Everything you get as a bonus after five years. You always expect something to happen.
I went back to dialysis – back to PD – but gave it up after a few years. Due to various infections, my peritoneum has lost the ability to diverge. So I turned to hemodialysis (HD), a procedure that uses a dialysis machine and a special filter called an artificial kidney or dialyzer to purify the blood. I had to connect to the machine for three or four hours in a row.
I did this at a local dialysis center in Cromer. I managed to continue working as an automotive engineer. My employer made some changes that allowed me to stop dialysis a few days early. This allowed me to have dialysis in the evening and rest in bed at night.
I was approached in 2006 and talked to several doctors about life donation and transplantation. After these discussions and two years of preparation, my wife donated one of her kidneys to me.
My antibodies were washed out using a process called plasma exchange, a process in which plasma is separated from the blood and removed to remove any abnormal substances circulating in the plasma. We were almost sure that it would work: they would get the antibodies out of me, wash the donor kidney well, transplant it, give me all kinds of drugs and stuff, and hopefully I would be all right. Unfortunately, this should not be. Despite anti-rejection medication, my body is rejecting the transplant.
About 15 months later, I had to have a nephrectomy – the surgical removal of part or all of the kidney – because it just wasn’t doing what it was supposed to do. Whether it was related to various problems I had before – a kidney transplant in the past, a blood transfusion – I don’t know. I don’t think anyone will ever know the real answer to this question. All these procedures give you all kinds of antibodies that fight all kinds of infections and foreign organs that you have been transplanted.
This meant going back to HD at my local dialysis unit in Cromer. Then in 2014 we thought we had hit the jackpot. They called me and said: “We have a kidney for you, it looks like a one-on-one match.” So I went to Addenbrooks Hospital in Cambridge.
I’ve been on medication and going to clinics and everything seems to be going well. In 2018, some changes were made to the drug and I began to feel very sick. She was treated with antibiotics for two years. Kidney didn’t like it and at the end of 2020 he spat out the pacifier for lack of a better expression. However, the kidney is still in place and working quite well, but I have to do four hours of dialysis three times a week, which is called “combining”. So I’m practically back in the world of dialysis.
Returning to the world of dialysis this time was quite difficult for me both mentally and physically. Mentally, because I didn’t expect it to happen so soon. Now I was self employed as a freelance engine engineer.
Physically, I was diagnosed with inflammatory bowel disease (IBD) between 2018 and 2020 due to all the antibiotics and steroids and I have cataracts in both eyes. Then I suffered a very big financial blow because I had to cut my working hours. I worked five days a week and made good money, but dialysis three days a week greatly increases the number of hours I can work. It can take up to seven hours to get to the hospital, undergo dialysis, and return home. I do this three days a week: Monday, Wednesday and Friday.
Dialysis makes you feel rather drained and lethargic, and although I go for dialysis in the morning, I don’t feel like lifting cars or removing wheels in the afternoon, so I only have work two days a week.
I am lucky to meet people with whom I can work several days a week, which is great. I managed to get into the achievements system, although it took some time – about 18 months – which helps.
As for the future, I think the doctors are a bit reluctant to put me back on the transplant list because of what I’ve been through in the past. All of this took a toll on my body. My arteries and veins are hardened, which prevents doctors from stitching anything together – one of the reasons I may not go down this path again.
My attitude is never say never. There are many advances and new treatments are constantly emerging that may help me in the future. I work a lot with charities like Kidney Care UK and talk to people who have had similar experiences and what the condition means and how it will affect your life.
The impact of Covid-19 and the economic climate has been significant for all of us, but even more so for people like me. For example, going to a dialysis center costs me £30-60 a month as I am on a strict diet for health reasons. The increase in the cost of products, especially products that have already risen in price, negatively affects my life and health. Received a discount on my water bill from Anglian Water in partnership with Kidney Care UK.
Living with kidney disease is hard. I’m 60 now and some days are better than others. Some days you get out of bed feeling good, other days you don’t feel like getting up at all, but you still need to do your homework. I’m one of those positive people who just keep going.
For more information about kidney disease, visit www.kidneycareuk.org.
Source: I News
I’m Raymond Molina, a professional writer and journalist with over 5 years of experience in the media industry. I currently work for 24 News Reporters, where I write for the health section of their news website. In my role, I am responsible for researching and writing stories on current health trends and issues. My articles are often seen as thought-provoking pieces that provide valuable insight into the state of society’s wellbeing.