Today's post is about something a little different than my usual posts, but I've been wanting to start blogging more about what life is like living with chronic, invisible illness for a while now. One of the many reasons why I set up my blog was to create a place where I could talk openly about my health, connect with fellow spoonies and maybe help others by sharing my own experiences. On Saturday 12th March, I attended an NHS Kidney Choices Day event with my best friend and I wanted to share with you all some of the information from the event. It's taken me ages to get around to writing this post! My best friend has had a kidney condition all of her life which has progressed to chronic renal failure, and so we attended the event to learn more about the different treatment options available to patients and what the next step will be for her recovery. I hope this post is helpful and educational (it's going to be quite sciencey!), and I hope you enjoy reading.
First off, how pretty are these flower cakes from the event? :) they were delicious, too!
The event was held at the Tickled Trout Hotel in Preston, Lancashire, which is a lovely hotel. There was a room allocated for the event, filled with numerous stalls where you could talk to different professionals and charities. Attending the events were the British Kidney Patient Association, a selection of nurses to provide information on medication, dialysis and transplants, as well as dietary advice and practical demonstrations of the various machines used for dialysis treatment. It was a fantastic opportunity for patients to view the machines that they would be using and ask all of the questions they had about how they work, what the treatment entailed and what to expect when going through dialysis. The nurses were all very friendly and helpful, thoroughly answering all the questions we had.
Before I discuss the different dialysis options that we learnt about at the event, I wanted to explain a little about how kidney failure affects the body and what dialysis is. The kidneys are vital organs that are responsible for removing waste products and excess water from the blood and making urine. They regulate levels of certain minerals in the body, such as potassium and sodium, and reabsorb any useful products. The kidney also makes important hormones, one of them maintains blood pressure. When the kidneys no longer work the way they are supposed to, they cannot perform these crucial functions and this is where dialysis comes in. Dialysis is also known as renal (kidney) replacement therapy, and what the treatment does is carry out the job of the kidneys by regulating nutrients and removing waste products from the blood via different types of machine. At the event, we were able to have a look at these machines and learn about how to use them.
There are two different types of dialysis available, and the first stall we went to focused on peritoneal dialysis. The peritoneum or peritoneal sac is a massive membrane inside your abdomen that surrounds all of your vital organs and protects them; part of it also covers your organs and contains lots of nerves and blood vessels so nutrients, etc. can be passed to your organs. Peritoneal dialysis works by allowing fluids to be 'pumped' into the body and across the petritoneum so that they can be absorbed into the organs. The machine above is used for automated petrioneal dialysis (APD), which filters fluid into your blood whilst you sleep and is known as the APD machine (sorry that my photos are not the best quality).
The big sac of fluid that can be seen above is filled with sterile solution that contains glucose and other important nutrients. The machine is connected via a tube to the patients abdomen and works for 8-10 hours whilst they are sleeping (but you can disconnect it briefly if you need to go to the toilet, etc.). If a patient opts for this dialysis treatment, a nurse will visit their home to show them how to properly use the machine.
The model in this photo shows where the catheter tube will be attached to the patient's abdomen, and this is where the APD machine is connected. The catheter can be neatly tucked up and dressing can be used to hold the tube close to your tummy so that you can't see it through your clothes. The nurses will provide you with information and products to keep the catheter clean. This method of dialysis is a very popular option; one of the reasons is because it can be used for people who work during the day.
Also attending the event were patients who were currently having dialysis and patients who had undergone a kidney transplant. Whilst we were talking to the nurse at this stall, she called over a man who had been on peritoneal dialysis for 6 months and he talked to us about how easy it was to use the machine and how much better he was feeling after starting the treatment. He gave us a tip about using the machine, that it could be quite noisy at night and that to solve this he paced the machine closer to the floor and it seemed to quiten the noise. My best friend and her parents were able to ask the man lots of questions and it was so helpful :)
The other method of dialysis that is available to patients is haemodialysis, which involves filtering the patients blood through a machine. This machine does the same job as the kidneys, removing waste products from the blood, before pumping it back into the body. The machine is simply known as a dialysis machine, and patients must undergo treatment three times a week, lasting 4 hours per session, making this dialysis much more invasive and time-consuming. This type of dialysis is most commonly given to patients who are eldery, young or at a more serious stage of renal failure. It is also provided to patients who are soon to have transplants or more urgently have to begin treatment because it is quicker to organise and start than peritoneal dialysis.
To have haemodialysis, patients must have a specific blood vessel created in their arm where the dialysis machine will be attached. This blood vessel is made by joining an artery to a vein and is known as an 'arteriovenus (AV) fistula' which allows blood to be taken out of the body and put back in via the same blood vessel. At the event, we listened to a talk given by a nurse about this machine and were shown an example of a fistula in a model arm, as well as the needle that would be used (seen on the table). The group listening to the talk was very small, meaning it was much easier to ask quesitons. Also listening was a man who was currently having haemodialysis and he very kindly allowed all of us to feel his arm where the fistula was situated. I wasn't expecting it to feel quite like it did, the blood was flowing fast through the area and my best friend described the feeling of it as 'popping candy' under the skin, it felt almost fizzy. It was a very interesting experience to feel it. Not all patients who receive this form of dialysis have a fistula created as sometimes they need to start treatment more urgently and instead have a tube inserted into their neck and treatment is given via a port (portacath) in their chest.
As well as talking to some patients currently on dialysis, we also had the opportunity to talk to a man who has had a kidney transplant. He told us about how much his quality of life has improved since having his transplant, which was great for my friend to hear :) He also talked to us about the importance of taking the medication that is required to be taken for the rest of your life after the transplant to prevent your body rejecting the kidney, and about the preparation to have the transplant. Both the patient and the donor must have blood tests to identify their blood types and their lymphocyte antigen (HLA) type. Additionally, they must have health and fitness tests to check if they are fit enough to deal with the operation; these tests include an electrocardiogram and echocardiogram (both heart tests). We were also made aware of a scheme that people who are donating a kidney to their sibling/spouse/child/friend can opt into called the National Living Donor Kidney Sharing Scheme. This ensures that if your kidney is not a match for your loved one, a kidney could still be available via the scheme and your kidney would then go to another person waiting for a kidney, with your loved one in turn receiving a kidney. Again, it was really helpful to talk to this man about what life before and after a transplant will be like.
Overall, I think the event was fantastic for providing information and resources to patients and their family/friends. It was great that the machines could be seen up close, and you could ask lots of questions and watch demonstrations. It was also incredibly useful being able to discuss treatment with people who have experienced it themselves and to medical professionals. It was a free event and refreshments were provided. I really liked how attentive the nurses were too; they made sure everyone was happy and comfortable, finding my best friend somewhere to sit down when she was tired. It was lovely to see how caring they were :) One thing that my best friend said would have been useful, is some younger people around our age to talk to who were going through dialysis/ who had had a transplant because we could have related more. If you or one of your friends or family members has renal failure, I recommend speaking to your local hospital about any uncoming events like this one. It really was a great and educational event. Thankyou to the NHS and all of the people who organised it!
Thankyou for reading! I know it was a very wordy post!
Have you been to an event like this? Do you have a kidney condition, are on dialysis or have had a transplant? Any tips, advice or information would be very beneficial for my friend :)
(The majority of information in this post has come from my own knowledge and my memory of the event, but some of the names of the machinery etc. were sourced on the NHS & Medical News Today website. The NHS choices image was sourced on google).