Seven essentials to take to dialysis

 In Clothing, Coping with Chronic illness, Diabetes, Patient Experience

Discovering that you need dialysis is, of course, a daunting prospect.  But with over 23,000 adults on dialysis in the UK each year and almost 470,000 in the United States, you are certainly not alone.

 

At INGA Wellbeing we are delighted that our adapted clothing has been able to support many patients having dialysis and building on their feedback, as well as the tips and advice of patient support groups and individual patients active on social media, we have put together a list of things to make your dialysis visits more comfortable. 

 

While we believe that all this accumulated wisdom provides a great starting point, it is almost certainly not complete and we welcome your thoughts on other items or issues you think should be added.  Please do leave a comment, or if you prefer to get in touch with us directly we’ll share it with our followers.

 

1.    Stay warm and cozy:

It can get cold sitting for an average of four hours, with your blood circulating outside your body, so it is advised that patients wear warm clothes. Of course, at the same time, nurses need to be able to listen to your lungs and have access to your arms (and legs) in order to be able to measure your blood pressure and gain access to the fistula. Adapted clothing, such as our men’s and women’s wear, can be easily opened thanks to discreet snap tape running from the collar to the cuff and then closed again around the tubing so that you stay snug and warm. No need to wrestle with awkward high-street clothing, or bear the discomfort of clothes snagging and pulling.  (There are also discreet openings in our trousers.) Taking off a layer or putting a layer back on is also a cinch with INGA Wellbeing.

 

A soft shawl or blanket and some socks (cashmere are a particular treat that will last a long while so make a good investment), and a hat are also recommended. 

2.    Take note:

With so many stationery hours to fill on regular basis, you will have plenty of time for deep thoughts, to-do lists, drawing or simply doodling and having a notebook to hand is very helpful.  Other patients often also have some great tips or names and contact information that you may want to capture, along with questions to ask of your care team and the such. Of course these days, many of you might prefer to use an app on your smartphone for this purpose and that works well too, of course. Whatever you are most comfortable with.  We are big fans of Trello to make lists of things to do as we go.

 

It might also help you to share what you’re going through either as a blog, a tweet or a journal depending on the method you prefer.  Loved ones can’t understand exactly how it feels to be receiving dialysis unless you tell them.  

 

3.    Keep it clean:

Take some hand sanitiser, wipes or gel to keep your hands clean, and give anything ‘suspicious’ a wipe down. You will find you can relax more knowing you don’t have to worry about germs.

 

4.    Let me entertain you:

Dialysis takes hours!! Some people use this as productive time to respond to emails etc and for others it is an opportunity to be alone with ones thoughts or to catch up on sleep.   Some dialysis centres even arrange activities for their patients to join in during their visit.

For many, however, it is an opportunity to read a book or watch a film. Here are some ways to keep yourself entertained as you sit or lie down for dialysis.

 

Books –  Finding a suitable book can be difficult as the ‘blurb’ doesn’t always warn you of storylines you might rather avoid while you are struggling with ill health.  Mr B’s Bookshop has worked with us at INGA Wellbeing to create a list of books that make great mental mini-breaks, transporting patients out of hospital to other worlds.  Please do take a look and consider benefitting from the wonderful discount offer if you buy the full selection. We’d love to also know of any page-turners that have taken you through dialysis.

 

Music – An MP3 or smart phone packed with just the right type of tunes can be the perfect distraction from the sights, sounds and smells of hospital. Indeed, a study of chronic pain patients showed that people who listened to music experienced less pain and nausea. So, consider creating a playlist – or better still, ask one of your friends or a family member to do it for you. They’ll be only too happy to be useful.  Different lists for different moods – relaxing, uplifting, calming.  Let us know what songs work for you.

 

Colouring, crosswords or puzzles – Sodoku was the diversion of choice for INGA Wellbeing co-founder Claire’s mum during her years of hospital appointments, though she admits she rarely went beyond the easy ones during treatments as brain fog settled in. Alongside Sodoku, playing cards or puzzle books can help to while away an hour or so, and there are some wonderful mindfulness colouring book for adults these days – turns out the kids were on to a good thing all this time!

 

Playing catch up – Prepare ahead by downloading a few films, documentaries or comedy classics to a smartphone, tablet or laptop and be transported in your mind to somewhere entirely different. Don’t forget to pack a great pair of headphones so as not to disturb others. You might even consider investing in some that block out the noise and endless beeps of a dialysis unit. If you don’t have a laptop, some centres have televisions.

 

Not only can you catch up with the latest must-watch dramas but you can also use this time to catch up on all those many tasks that you’ve been meaning to get to, such as on-line shopping, responding to emails from friends and family, paying bills or finishing the jobs at work you haven’t managed to get to.  It feels good to get things done in this otherwise dormant time. (though sleeping is also warmly recommended by many, so no shame in this being ‘dormant time’ too!)

 

Games and Apps – Time rushes by when you are engrossed in a great online game. Best to choose those that don’t require WiFi as this is notoriously unreliable in most hospitals, but be sure to ask your centre if it is available. Ones we have tried, or others have recommended are Gummy drop, backgammon or wordscapes. You can also play/learn chess or become a gamer and design your own Minecraft world.

 

5.    Food and drink:

It’s always worth taking some snacks though it is important to follow your dialysis diet guide for food and fluid intake.

 

6.    Pure comfort:

Pillow and blanket – don’t worry that you look like you’re moving in!  You are going to be sitting still for quite a while and home comforts can go a long way.  A small pillow or favourite cushion will help you to find a good position and it is so much nicer to smell your own washing powder than the hospital cleaning fluids! A blanket is provided by most centers, but again you may find that you simply feel better with your own.

 

7.   In the bag:

Find a good, reliable bag to take what you need to dialysis and leave it packed and ready in the closet. Over time, you will work out what are your must haves and what you can do without, so you’ll have exactly what you need to hand. At INGA Wellbeing, we felt that a zippered, canvas tote bags, in natural or black, with an adjustable shoulder handle and two short handles that can be attached to beds or chairs would make patients’ lives a little easier and created one that is perfect for carrying pumps as well as private possessions.

 

We really hope that this list has given you some good ideas and we would love to hear from you what worked well along with any other suggestions you might have. Please do follow us on FacebookInstagram or Twitter for more ideas and suggestions that could help make those visits more tolerable.

 

All the very best to you from the team at INGA Wellbeing.

 

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