Hope you’re all having a great weekend! I’ve been feeling a little rough after my Spring Covid Booster. But at least it’s done now for another 6 months! It’s weird how some I’ve fine after, and some I haven’t! But I guess it hasn’t helped this time, my body not feeling particularly strong at the minute.
Anyways, I’m guessing you’re sat here reading this blog, not because you want to know about how my Covid jab went, but how my Iloprost infusions went. I was actually planning on updating you all last weekend, but I was wiped out. I ended up spending the whole weekend in bed sleeping and resting.
I Tolerated The Max Dose
Overall, the Iloprost infusions went well! It was a tough week, mentally and physically. However, I managed to tolerate the max dose 4 out of 5 days, which was an achievement! But it also took a lot out on my body! I pushed my body everyday to hit that 40. But on one of the days, I just couldn’t. My body just wasn’t strong enough to push through the pain!
Everyday, the nurses would see me struggling in pain. They would remind me how I don’t need to be getting onto the high dose. How any dose is a good dose. We talked about how a lot of people tend to stay on 20 or 30 for the whole week. So just to get onto 40 on one day is an achievement, never mind 4 out of the 5 days. They even said how somebody came in for Iloprost a couple of weeks prior to me, and gave up on day 2, as it was too much! I can definitely understand why! There’s been many times I felt like giving up and walking out. It’s tough not just physically, but mentally too!
Iloprost is a tough treatment to go through!
For anyone who’s new to my blogs and not heard about Iloprost before, I wrote a full blog on how Iloprost works back in January: Iloprost For Severe Raynaud’s
Getting My Veins Where A Nightmare
At the start of the week, getting a vein to cannula was a nightmare! But thankfully, as the week went on, the Iloprost dilated my veins/blood vessels, making it a bit easier! We had my hands in a bowl of warm water on one of the days, to attempt to bring my veins up to the surface. My ‘best’ vein now how too much scar tissue in it, and can no longer be used. And one of the days the Iloprost causing tracking up my arm, but we didn’t dare take the cannula out, as we was worried we wouldn’t be able to get another vein to continue my infusion. So instead, the nurses carefully monitored the tracking, and I just put up with a sore vein all day!
The Nurses Were Amazing!
I love the ward I go onto for Iloprost! The nurses are all so lovely! They even remembered me from December when I was in for my last round of Iloprost! Ok….I’m not sure if that’s a good thing or not?! But they welcomed me back on the ward, and asked how Norway was, which was lovely. They see a lot of patients on that ward, but they always say, they always remember the Iloprost patients!
So Grateful For The NHS
I was lying in my hospital bed, sat watching Greys Anatomy (an American hospital drama), just thinking to myself how lucky we are to have the NHS. How I can receive this treatment, and not have to worry about a single penny. Not like the people in America, who don’t have a NHS. They have to worry about if they can afford it, if their insurance will cover their treatment, etc.
People slate the NHS, and yes it might not be perfect, but we are so lucky to have it! We are so lucky when we do need hospital care, we get a bed for free, we get our treatment for free, and we even get food for free!
I know we kind of do pay for it with our National Insurance, but that’s a lot cheaper then actually paying for your hospital stay/treatment etc. We are lucky, and we need to look after our NHS!
Have to say though, watching a hospital drama while sat in a hospital does feel rather odd!
Hands Are Already Starting To look A lot Better
One week on from my Iloprost, my hands are looking so much better! They haven’t fully healed yet, and it will take a few weeks, but the swelling has gone down enough I can finally wear my engagement ring again! Just the little things in life! 🙂
That’s it from me this week.
Until next week,
Goodbye for now.
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
