Last reply 1 month ago
Trouble With Cannulas

So I’m currently sat in hospital having my second ever infusion of ocroloizimab. The steroids they give you are wearing off a little so I’m feeling well enough to write this.
I hate having cannulas in my arm. I know some people are fine with it but I really am not a fan. I’ve realised recently that the thing I don’t like is not the pain of it going in (although I have to look away) but having a needle stuck in the crook of your arm for a long period of time, making you have to keep it straight and restricting my movement. Unfortunately, the veins in the crooks of my arms are super big and easy to get to do that is a nurse’s preferred “point of entry”.
Two weeks ago, during my first ever infusion, I asked to have my canulla put into my right arm but in the forarm instead, the vein is smaller but it allows me to move my arm, relatively unimpeded. It all went without a hitch and barely even hurt and I swore to have all cannullars using this method in the future.
Today though, a number of factors came together to make my cannulation an altogether hellish experience. I hope that by testing this you can learn what I did wing and have a better experience for yourself in the future.

I’ll start by saying that my nurses and all staff present were 100% professional and should not be blamed for anything that happened in the slightest.

Mistake 1)
I clearly hadn’t been drinking enough in the days leading up to my infusion because they struggled to find the veins that were easy the first time. They only had a big needle due to supplies being harder to come by at the moment (Covid-19) and I although the vein in the crook of my arm was easy, the veins elsewhere were smaller, less visible and more sunken.
They looked and found a possible vein but after two attempts gave up on it, I got stabbed twice in the arm but the vein was missed because it was too small.
So they went for my other arm and found another forarm vein. They got the needle in but when they tried to take blood (needed for research that I’ve agreed to take part in) it bulged under my skin instead of going into the needle. I note have a small lump in my arm from blood pooling that will probably become a large bride but is expected to go down in a few days.

Mistake 2)
All this stressed me out (although I tried not to show it) and clearly I hadn’t eaten enough and my blood sugar was low because I started to lose my vision. I had my eyes open but couldn’t see anything at all.
My hearing became muffled and slowly the sounds of the nurses started to fade. My arms and fingers felt tingly but that was the only thing I could sense. Just before it started I had said “I’m feeling a bit funny” but after that I couldn’t bring myself to open my mouth. I felt this overwhelming feeling that if I moved or tried to speak I would explode.
I stayed conscious but it was like I’d fainted.
My back started to sweat and apparently, I went white as a sheet so they knew something was up. I was stuck on an observation station and my blood pressure had dropped pretty damn low and they got a little worried. All I knew of this was feeling someone touching my right arm, muffled voices and someone raising my legs.
Luckily, since developing MS I have had about 13 panic attacks so I correctly identified what was happening to me as a feinting fit, bringing on a panic attack. I concentrated on my breathing, trying to make it slow and controlled: an in breath lasting 3 seconds, a pause of two seconds and an out breath of five seconds so I wouldn’t hyperventilate. Either that or the raising of my legs helped because after what felt like days (but we probably only a few minutes) I suddenly started to see people in front of me.
It took a while to calm down but my blood pressure slowly rose and my colour returned while I still felt pretty lightheaded and my fingers and face tingled, they tried to do the canulla again. This was because I was in the only room they did injections in and I was taking up space and time, I understand and sympathise with their decision. I let them attempt to go into the crook of my arm and my veins there are big so it was easy.
My transfusion is going ahead as planned and after a cup of sweet tea and some lunch I’m feeling much better.
At the time though, I genuinely thought I was going to die, although I know this was mainly feelings from the panic attack and I did the right thing by remaining quiet and letting the nurses do their job and look after me.

Lessons learned:
1) Before a canulla, make sure you drink well for a few days leading up to it, to ensure you’re hydrated and they can find the veins, especially if you are planning on requesting they do it in the forarm, back of the hand, ect.

2) Have a good breakfast on the day of your cannulation to keep blood sugar levels high.

3) I did this I think but be nice to your nurses. Sticking a needle in somebody safely and with the minimum amount of fuss is a hard job and you are often expected to do it continuously throughout the day. If you cause a long delay by being squeamish, feinting, being picky about where they inject, this is totally not your fault and I have great sympathy for you…but I also have sympathy for the nurse who has to deal with you. It’s a situation where it’s nobody’s fault and sensitivity and empathy should be practiced on both sides.

I hope this helps someone who’s expecting a cannula in the future and I hope it hasn’t answered anyone, that’s not my intention.

Love you all.

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1 month ago

Hello Will, I am heading to the same spot as you for my 1st half inf of Oc on Monday. It was delayed as we were on 14 days SI due to our youngest having had symptoms. All good to go now which is just as well as I think I am currently relapsing. Mega arm and leg nonsense going on for last few days….aaanyway… πŸ™‚

I hope you don’t mind, just wanted to ask, were you allowed someone with you when you went in, what with all the Cvd-19 restrictions and what have you ? A friend is taking me there by car, we will have travelled a fair distance and I just wondered if she can sit with me as we might be there a while. It’s not as if she can go take in the delights of the Big Smoke if she’s booted out the door!

If you accept my friendship request perhaps you could DM me on here? I don’t actually know bc I’ve only had DM’s on here from he site admins saying a friendly hello, so I’m assuming that’s how it works?! Thank you.

Hope you are feeling well and staying safe. Best, PPS πŸ™‚

1 month ago

Hello @peterpanssister, great that you’re starting treatment. A lot of places have put Ocrevus on hold, so you’re lucky. My sister recently had her second infusion. Both times, hubby dropped her off and picked her up later. She was fully kitted with magazines, headphones, iPads, which she took herself of course. You shou,d call ahead if you can to check if someone can come with you, as hospitals are under such strain at the moment, there may be restrictions. Good luck for Monday πŸ™‚

1 month ago

Hi @vixen, thank you for replying and thank you to @will_middleton for DM ing me πŸ™‚

I tried calling to ask about my friend coming in but it’s just a machine at the weekend, I should have thought of this on Friday! But from what Will has told me, she won’t be able to come in with me onto the ward where I actually have it. I suspected as much.

As you say Vixen, I am fortunate to be having it at all so I am certainly not complaining but I do feel bad for my friend. I have no other way of getting there as I can’t drive now due my visual impairment and one of the conditions of my attending from my consultant was that I don’t use public transport. Like I say, I’m certainly not complaining, it’s just trying to juggle it all, childcare etc. We have young daughters with additional needs and the usual family infrastructure that would mean my husband could take me has been dismantled by social distancing measures. Hey ho.

Thanks again πŸ™‚ xx

1 month ago

Hi Will.
I’ve just had treatment at Broomfield, and no one was allowed in with people, they had taken all visitor chairs away, to create more distance between patients, so the likelihood is that anyone relying on a family member or friend, they will have to wait somewhere. There was a place open for people to get hot drinks, but people then obviously had to sit by themselves away from others in the main lobby, downstairs.
As for cannulas…you’ll get used to it. Everyone does. No one likes them, but we have to have them, so…man up about it! You did sound like you were having a bit of a whine to be honest, and I sympathise but guess what- you are no different from everyone else that has to have infusion treatment! πŸ™‚ The alternative to not have treatment and risk relapse is silly, so you just learn to get on with doing things that you don’t like. It’s that simple. We’re lucky to even get the treatment we get, its expensive and in countries that don’t have the NHS, people struggle a lot worse, so we should be grateful. Drink lots of water, take things to do to keep occupied when you go, take a straw for cold drinks which might make drinking easier if you are one handed like me, that’s what I do, or I get my hot drinks and get them to put them in my travel mug which is nice and easy to drink from one handed. There are things you can do to help yourself. Stay positive, you’ve had your second one, yay! Think about it, you’re starting treatment which will help you feel less fatigued, less wobbly, you’ll gain more confidence and you’ll feel a lot healthier when treatment kicks in and kick’s your MS’s butt! πŸ™‚

Like many of us, I had a hard time and actually wrote a book about my first two and a half years of being diagnosed, so if you’re bored, look it up and read it for free on wattpad, it’s called ‘Sunshine and Hand Grenades’ and has a bright yellow front cover.

Best of luck with everything, hang in there, be strong, because if you aren’t then you won’t keep going. And that’s just not an option is it?! πŸ™‚

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