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 2 years has become my new normal since being diagnosed. And during my recent infusion I realised that there are actually a few things that i've learnt over the last 24 months about veins and infusion days that make the experience so much more enjoyable.

So this weeks post is all about infusion day. I thought i'd share with you what you can expect on the day, what to prepare for, and some of the things you can do that will make your experience a little less painful and more of a positive one.

 

My infusion days usually go something like this...

I go into Sydney city to St Vincents Hospital. I head up to the infusion room and 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 you are. They come over when they're ready, ask me how i've been 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 the morning show 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 refreshments. But before I get there I make sure I do the following.


1. take it easy the day before

In my experience if I have energy the day is much more enjoyable. I can venture into the city after my infusion, have a look around and grab some lunch if I want to, and 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 actually quite tiring in itself.  So conserving your energy the day before will make infusion day much more enjoyable for you. I know for me when i'm tired my symptoms will flare, emotions will rise and the day is just a lot less pleasurable. 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 on 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 not fun. And if they can't get a vein you might have to make another appointment come back another day.

Dehydration also impacts your blood pressure and if too low the nurses might make you chug water on the spot, and sometimes its 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. I find theres nothing worse than being strapped to an infusion unit and being cold. 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 iphone and my headphones and I make sure I have heaps of podcasts available to listen to. I also take a visual diary or note pad to write and draw on and sometimes a book or magazine. However I find reading harder as there is always distraction with people talking and the TV on, so headphones are great to just zone out. Some people take their laptop and watch movies - ask for the wifi. I also take my cell phone charger and charge my phone during the last hour so its 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 savoury dinner leftovers, raw sweet treats, carrot sticks and fruit. I also take a reusable coffee cup with a few green teas bags and they have hot water there for patients to use. Take a water bottle as well and you can refill it when you leave if they have a water filter. 

 

6. emotions might stir

Some days you'll be fine and other days it might stir some emotions. It does remind you of your illness and its a real reality check in that respect. Lately, as i've gotten better i've found it a bit harder because all of a sudden i'm thrust back into the world of sickness pretty much as soon as I walk into 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 little 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 - avoid. I once had one put in my hand and it was so painful they had to take it out - yep! 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 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 just 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 hassle 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 a massage 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 might stir but stay positive

7. pick your best vein

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

9. treat yourself


Those are my 9 tips for infusion day, I hope that's helped you to see the process and be more prepared for your infusion day.  Just remember to make it fun and enjoyable for yourself, 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 for infusion days in the comments below. I'd love to know if anyone else feels the same as me or has any words of wisdom that we can all learn from.

Much love!

Simonne