Kidney Disease Patients in general are a very resilient group of people but they do have their challenges from time to time. People do not know about these challenges because they only see the physical attributes. They don’t realise there are more to our cheerful mien than meets the eyes. Following on from the 7 things you shouldn’t say to kidney disease patients; here are 10 things most people don’t know about kidney disease patients and kidney disease:
- Most people become kidney disease patients as a result of a traumatic experience or disease like multiple organ failure, which happened to me or through other diseases like Lupus, Diabetes, Polycystic kidney (cysts on kidney which can be hereditary), Chronic Pyelonephritis commonly known as Urinary Tract Infection(UTI),. Nephrotic Syndrome – Protein in the urine. This means that most patients can have maybe two or three conditions that will need treatment alongside kidney disease. Anaemia is common among kidney disease patients. Anaemia is one of the important complications of kidney disease, this is because red blood cells, that carry oxygen, are not being produced by the body. This means that oxygen which is needed by tissues and organs including the heart and the brain can’t function well. This can cause heart problems which could lead to death, if not treated properly. Patients need an injection called EPO, given once a week or month, depending on the patient’s needs, to help the body produce red cells. Anaemia starts to develop in the early stages of kidney disease. I was on EPO, iron infusions from an early stage in my kidney disease journey and was usually in the hospital for about 4 hours for the infusion. This sort of trained me, I guess, on what to expect when the disease deteriorated to final stage: Chronic Kidney Disease Stage 5. I was lucky that I didn’t have any secondary disease to make things complicated. The other warriors were an inspiration to me because of their patience in the light of the challenges that came their way each day.
- Most patients would need a transplant for 2 organs, sometimes at the same time. Most of the kidney disease patients I met, waiting for a transplant, had two or sometimes, 3 conditions that needed resolving at the same time as getting their transplant. I spoke to a lot of patients during my time in the hospital. The awesome stories I heard, made me count my blessings every time. There was this guy who I met on Facebook on the other side of the UK. We all met on a Facebook group set up for all kidney patients in the UK to connect with each other. He had been waiting for a kidney but also needed a new pancreas. I was in awe because he was very positive about things he was going to do, once he got his transplant. I was so happy to hear he had gotten a transplant for both. Unfortunately, he developed problems with his kidney transplant and is waiting for a verdict on what to do. I’m keeping my fingers crossed.
- A transplant is not a cure but a treatment, except new research finds a permanent cure. There are a lot of assumptions around kidney disease at the moment. One erroneous assumption is that once you get a transplant, you are cured and everything goes back to normal. That is a misconception. Getting a transplant is not a cure but a semi-permanent treatment which gives the patient a semblance of a normal-ish life. The reality of the condition is that you are on lifelong anti-rejection tablets and have to commit to blood tests and a barrage of other tests, if and when required by the doctor. There are patients who have had 2 – 4 transplants because their body either starts to reject the kidney or the kidney doesn’t ever “wake up” after being put in. I met a patient in the hospital who had had about 4 transplants and was on his 4th one. He was fighting to keep the 4th one because if he lost it, that was his last chance. He also had a second condition which was aggravating a lot of things for him. His courage in the light of everything he was facing was astounding. The support from his partner is bordering on sainthood. She’s always by his side at every appointment or dialysis session before his transplant. I don’t know how he would have coped without his partner beside him. I can’t commend her enough.
- Kidney disease is a debilitating disease like any other like cancer. Kidney disease is a debilitating disease and it also attacks the body of the patient. Some patients manage to muddle through each day but because of all the blood being lost during dialysis, most patients become very weak because as in point 1 above, the body is unable to produce red blood cells that make the oxygen so the patient is always tired. Some people would start to feel their legs weakening and giving way.
- It affects ability to concentrate or work long periods at a time. Concentration becomes difficult for the kidney patient. If you’re somebody who prides themselves on their memory, my advice will be to get a notebook to take everywhere with you because you will definitely forget things. You need the notebook to immediately write down any idea that occurs to you, whether at work or at home with the family.
- Needs dialysis at least 3 or 4 times a week or longer depending on severity of the condition. Kidney disease patients need to go on dialysis at least 3 times a week, in order to survive. Dialysis is necessary because depending on the level you are, you cannot go without dialysis for more than 2 weeks. The toxins in your body build up and since your kidneys are not working to expel those toxins from your body, you eventually die from the toxin build up. In my 10 year experience of being a kidney disease patient, I know of people who have decided not to continue with dialysis and they have not survived their decision. We have a community where we all support each other to make better choices. I can say we have seen a few cases of people who don’t want to continue dialysis for personal reasons. That’s one of the encouraging thing about belonging to a group where people who understands and know what you are experiencing as well and can give advice.
- Most are on food and fluid restrictions: As a kidney disease patient, I was on food and fluid restrictions. This can be quite difficult for someone like me who likes their food especially African food. It’s about cutting out most things like takeaway foods, certain vegetables and seafood etc mainly because of the MSG in takeaways, potassium and phosphate in most foods like plantain, egusi, pounded yam etc that a normal kidney can flush out. It’s especially really bad when you go out with friends and you can’t have some foods because of your restrictions. The fluid restrictions especially sucked LOL. I had to measure what I drank on a daily basis. At first I was on 450ml a day then it was increased to 750ml a day, it was actually keeping within those limits that made it most difficult. You had to measure each day as the fluid restrictions included water, tea, any drinks non-alcoholic and alcoholic etc were included in your daily allowance. (Go to my health Hacks to find out how to hack food and fluid restrictions.)
- Some patients are unsuitable for transplant so are on life-long dialysis. Some kidney patients are not suitable for kidney transplant. They never ever have a chance of getting the call that means a change in their life style. I met a woman in my dialysis unit who had been on dialysis for 35 years because she was not suitable for transplant. One thing you find about dialysis patients is that, most of us are quite chipper and always take life as we see it but it’s not the same for everybody. This lady was trained to actually do her own dialysis so she sets up her dialysis machine and puts the needles in her arm, herself. I drew strength from all these people which helped me to deal with my own dialysis demons at the time. I did love talking to these amazing warriors.
- Some kidney disease patients suffer from depression and need support. It is not always easy for people to deal with being on dialysis. It messes with your head especially if you have needle phobia like me. I used to cry a lot when it was time to go to the hospital for dialysis. I used to cry and ask why me, it really messed with my head. However, I had my family rallying round me. Most people who know my family would understand what I am talking about. I know in Nigeria, my home country, people especially the men tend to put on a brave face because that’s the manly thing to do. This means that these people then go through depression on their own without support. Since kidney disease is a sort of taboo subject to discuss in some African communities, it’s only when the family can no longer support the exorbitant fees they pay for the dialysis sessions that they reach out on social media. Then, by the time they can raise the money for dialysis, most of the patients have passed on. Once that feeling of depression starts , it is advisable to reach out to people around you and talk to them about how you feel. Do not keep it inside you but open up to people around you and get that much needed support. No man is an island. I don’t know if there are renal psychologists in Nigeria but I found the one I worked with in the UK, during my own emotional challenge very supportive. I was able to just about manage my needle phobia and put my needles in my arm myself, with her support…At HOME!
- Black people wait longer for a transplant and more likely to die before transplant: Unfortunately, a percentage of kidney patients die before receiving this life saving organ. This happens especially in the African community because most people wait longer than their white counterparts for a transplant. This is because the organ has to be a complete match to the recipient mainly as a result of our genetic makeup. It’s not only in kidney disease but other conditions requiring organ transplant. This is one of the reasons that a lot of education around organ donation is going on right now in the UK. I am one of the campaigners and speak for organ donation from the Afro-Caribbean Community (this encompasses Africans, Caribbean and African American Communities) otherwise known as the Black Community. This waiting period might be longer in Nigeria except the patient can get help from benefactors in the community, who can fly them elsewhere for a lifesaving procedure. Unfortunately, this isn’t always the case. Finally, there are some hacks I will be sharing which will help people to manage their condition for longer until they can get the much needed help they need. I hope these hacks will help people to manage this disease before getting this life saving organ.
DISCLAIMER: My health hacks are by no means a cure or treatment because as I said in one of my articles, I am not a doctor. I am using my 10 year experience of kidney disease to help people understand how they can manage their condition. My hacks in no way replaces medical care and advice from a qualified medical doctor. Please always seek the advice of your medical doctor before trying any hacks.
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Hilaria popularly known as Hilary is a kidney disease survivor and a transplant warrior. She first started writing to help deal with the pain and suffering of her journey but it quickly became a path to creating an awareness of BME organ donation. She is very passionate about her campaign as she felt that if people knew and could identify with her suffering, it will help people to change their minds and become organ donors.
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