9 Tips for infusion day - how to make it less painful and more enjoyable

 Tysabri IV infusion

Tysabri IV infusion

Having my Tysabri infusion once a month for the last 3 years has become my new normal since being diagnosed. During my recent infusion I realised that there are actually a few things I've learnt over this time about veins and infusion days that make the experience so much more enjoyable.

So I thought I'd share with you what you can expect on the day if your new to infusions, what to prepare for, and some of the things you can do that will make your experience less painful and more of a positive one. Yes, it is possible!

 

My infusion days usually go something like this...

I travel in to Sydney City to St Vincents Hospital and head up to the infusion room where I'm greeted by the nurses. There's usually about 4 or 5 other people receiving infusions and medications as well. I take a seat in one of the lazy boy chairs they have available for everyone. The nurses are amazing, they're professional and genuinely interested in how we are. They come over when they're ready, ask me how I've been feeling and what I've been up to, we chat for a bit and they place my arm on a pillow and prepare it for the cannula.  

The infusion room at St Vincents Hospital is a lovely light room on the 2nd floor. There's a TV playing and about 8 lazy boy chairs that recline so you can sleep if you need to. There are 2 bathrooms that we have access to, plus hot and cold water for drinks. They also bring around sandwiches, cheese & crackers and juice for those that want it. But before I get there I have a few things I like to do in preparation, starting with one of the most familiar things to someone with MS - Rest.


1. take it easy the day before

In my experience if I have energy the day is so much more enjoyable. Having energy means I can go in to the city after my infusion, have a look around and grab some lunch and really make the most of the day, I don't spend the whole infusion time zoning out with fatigue or hanging out for it to end. You'll be sitting for 2-3 hours, which is quite tiring in itself.  So conserving your energy the day before will make your infusion day much more enjoyable for you. When I'm tired my symptoms will flare, emotions will rise and the day is just harder than it needs to be. Plus, if you have to commute and navigate a big city it takes energy and concentration so it really helps to try and be as full of beans as you can.

2. HYDRATe as much as possible before hand

I learnt this the hard way, having a needle sucking at dehydrated veins is really really painful. My tip is - as soon as you wake-up on the day of your infusion, start hydrating and keep going, drink a couple of large glasses of water upon rising, make a few herbal teas to drink while your getting ready then take a bottle of water with you for the day ahead. If you do this the nurse will be able to find your veins much easier as they'll be juicy and plump. Also the cannula will glide in and you'll feel better for it. Having numerous cannula poked into wrists, hands, numb forearms while they try and find a vein is excruciating. And if they can't get a vein that day they might make come back another day. Ever since I've done this I've never had any issues with the nurses getting a vein.

Dehydration also impacts your blood pressure and if too low the nurses might make you chug water on the spot, and sometimes it's tap water, so you may as well drink your nice filtered water at home or from your drink bottle beforehand and save all the hassle.

3. stay warm - take a light blanket or big scarf

Veins constrict in the cold so the nurses find it harder to get them. They'll tend to put hot packs on your arms to encourage your veins to show if they aren’t getting anything.  So to save time and hassle just stay nice and warm as well as hydrated. Also, the infusion room tends to get quite cold at St Vincents so I always take a big soft scarf that doubles as a blanket to wrap around me or drape over my legs to stay warm. Light blankets and scarfs are great as you wont be able to put things over your head once the needle is in your arm. Or you could just ask the nurses for a hospital blanket, but I love taking my own, it's much more comforting.

4. TAKE a variety of THINGS TO DO

A Tysabri infusion lasts about 45min to an hour, then they flush with fluids which is about another 40 minutes and then you'll be monitored for side effects for another hour after that. My appointments are usually around 10am and I generally leave around 1pm sometimes later, so it's a long time sitting.  I take a fully charged phone and my headphones and I make sure I have heaps of podcasts to listen to. I also take a visual diary or note pad to write and draw on and sometimes a book or a magazine. However I find reading harder as there is always distraction with people coming and going and the TV on, so headphones are great to just zone out. Some people take their laptop and watch movies. Be sure to ask for the wifi password. I also take my phone charger and charge my phone during the last hour so it's full for getting home.

5. take a variety of foods

Pack a variety of snacks as you will get hungry, mine goes over the lunch period and I get starving so I take dinner leftovers, raw sweet treats, carrot sticks and fruit. I also take a reusable coffee cup or tea flask with a few herbal tea bags as they have hot water available for patients to access. Take a water bottle as well and you can refill it when you leave. 

6. emotions may arise

Some days I'm completely fine and other days its more emotional. It does remind you of your illness and it's a bit of a reality check in that respect. Lately, as I've gotten better I've found it a little harder because all of a sudden I'm thrust back into the world of sickness pretty much as soon as I walk on to the hospital grounds. How I avoid getting too upset is by a positive outlook. I am genuinely happy that this drug is available for me and that I have access to it and to such a great hospital. Just look at the positives and distract yourself with the things you've brought to play with. But I am also a big believer is expressing emotions, if you need to have a cry then I think you should just release that from your body, but don't let it get you down for the whole day. 

7. pick your best vein

I have one arm with a juicy vein at the surface which is my go-to now and because of this it's much less painful and easier for the nurses to use. Choose wisely otherwise they'll go for other juicy looking veins on your hands and trust me boney bits like wrists and hands HURT, try to avoid them as much as you can. I once had a canula put in the top of my hand and it was so painful they had to take it out. I felt like high maintenance which is not a great feeling.

8. make your next appointment

When your all done don't forget to make your next appointment with the nurses. I keep all my appointments in the calendar on my phone with alerts to remind me. Also grab the direct telephone number of your infusion room so you can call if you need to re-arrange times. I've had trouble with hospital receptionists not knowing who to put me through to in the past and it's incredibly frustrating. I've also been cut-off numerous times. So grab the direct line, the nurse will know it and put it in your contacts list on your phone. It will save you precious time and frustration in the future.

9. treat yourself

Now all of that hard stuff is done go and take your mind off it by doing something you love. Go meet a friend for lunch, treat yourself to a pedicure or some light retail therapy. It's a great way to put a positive spin on your day and have something to look forward to while your at the hospital. If you have to go back to work then make sure you plan something lovely for that evening or that weekend.


In a nutshell

1. take it easy the day before

2. HYDRATe as much as possible beforehand

3. stay warm - take a light blanket or big scarf

4. TAKE a variety of THINGS TO DO

5. take a variety of foods

6. emotions may arise but stay positive

7. pick your best vein

8. make your next appointment with an alert to remind you

9. go treat yourself


I hope that's helped you to see the process and be a little more prepared for your infusions. Once you master these you'll handle infusion days like a pro and you won't walk out feeling like an emotional pin cushion.  The most important thing is to make it as fun and enjoyable for yourself as you can, if you can put a positive spin on your day it will help immensely.

Also please let me know if you have any other tips or things you've learnt at your infusions. I'd love to know if anyone else feels the same as me or has any other tips that we can all learn from.

Much love!

Simonne