Happy New Year! Hope you all had a wonderful Christmas and New Year!
We had such a lovely Christmas in Norway. We caught the cable car and watched the sunset at the top of the highest peak in Bergen, visited the World’s Largest Gingerbread City, went on the most magical boat trip through the Norwegian Fjords, and discovered first hand, Bergen is the wettest city in Europe! It was certainly a Christmas to remember! We then spent New Year with family, waving goodbye to 2023, and celebrating the New Year in. A year with lots of hope!
My Week In Hospital
The week leading up to Christmas wasn’t so magical! I spent the week in the hospital having Iloprost infusions for my severe Raynaud’s. Five long days of pain, high temperatures, and no appetite. It was a tough week! I downloaded a lot of Christmas movies to watch while I was laid up in the hospital bed. But I only actually managed to watch three of them! The rest of the time I just felt too ill, and slept.
With it being Christmas, the atmosphere on the ward was great! Everybody was in the festive spirit! There were festive stickers on the windows, nurses were wearing festive tights, and there was Christmas music playing in the background. Everyone on the ward was fascinated by my Christmas plans, and that ended up being the subject for most of the week!
How Iloprost Works
Iloprost is such a nasty infusion! It’s not like having a ‘normal’ infusion! Here’s a little bit about it, for anyone who doesn’t know:
The drug Iloprost comes in a little glass vial. It then gets mixed in a 250ml sodium chloride bag. Once the Iloprost gets mixed with the sodium chloride, it has just a 6-hour expiry. In that 6-hour expiry window, you as the patient will try and get the biggest dose you can tolerate. Depending on your body weight your maximum dose will either be 40 or 50.
The Higher The Dose, The Better The Outcome!
On day one of the infusion, you will start on 10. Every 30 minutes you will get your obs done. If you are tolerating it ok, you will get asked if you want to increase the dose. They normally increase it by 10, but if 10 is too much, you can ask for it to be increased by 5. As the dose increases, the side effects often increase too. Iloprost can cause nasty migraines headaches nausea, vomiting, flushing, low blood pressure, high temperatures, and lack of appetite. If the pain becomes too much, you can ask for the dose to be decreased. The higher the dose you take, the better the outcome afterwards. So you are constantly trying to push your body to the max! As soon as they turn the infusion off, you start feeling so much better!
This whole process repeats for five consecutive days!
You Put So Much Pressure On Yourself!
When having Iloprost, there is a lot of pressure getting on to that max dose. It’s not the nurses putting the pressure on you, it’s yourself. It yourself knowing the higher the dose you take the better the outcome will be. You tell yourself it’s mind over matter. You tell yourself you can do this!
You are lying there in so much pain, the nurses keep asking you if you want the dose turned down, but you refuse. You look at the clock and think just another two hours of this and it will be over. Just another hour to go, it is all over. Just one more ob to go. You then hear the nurse coming down the corridor with the trolley holding the flush, ready to switch infusion bags over. Every day, that moment became my highlight!
There’s No Right Dose
I got speaking to one of the nurses about the Iloprost and what doses people generally tolerate. Every patient is different! Some stay on 20 for the full week, some stay on 30. Some go up and down doses for the full 6 hours. And out of everyone they have treated on their ward, only one person has ever finished a full bag of Iloprost! Just shows you how tough the treatment is!
If you are going into the hospital for Iloprost, any dose of Iloprost is an achievement. If you get through five days of Iloprost on the lowest dose of 10, you deserve a medal. It’s a nasty treatment to have!
Tips For Getting Through Iloprost
Here are tips that have helped me:
- There is a good chance you might loose your appetite. The only thing I could stomach during the day was a bag of crisps. Since I was eating very little, I found drinking Lucozade helped.
- To help with the migraines caused by the Iloprost, I bought a pack of Kool ‘n’ Sooth Migraine Cooling Gel Sheets to put on my forehead during the infusions. I found these helped!
- Take anti-sickness! You should be offered this as part of your pre-meds each morning. If you are not, ask for it! If you get offered it, say yes to it! I was given a dose of Cyclizine via IV and it worked for the whole 6 hours of the infusion! The nurse said to me, many people say no to this, and end up spending most of the 6 hours vomiting. So my advice, say yes to it and take it as preventive!
- Depending on where you are, if you can ask for the lights to be turned off. The bright lights will not help with your migraine. I was quite fortunate. On the ward I was on, they give Ilprost patients their own little cubicle area. So they can draw the curtains across and turn the lights off, without affecting any of the other patients. There was a little window behind me, where the nurses could still keep a very close eye on me. When you are on Iloprost, you have to be very closely monitored.
- Tell yourself, you can do this! It’s a very challenging week and there will be many times you are going to want to give in. But what is going to help you get through it, is your mindset. I always find day 1 and 2 the hardest. But after day 2, you tell yourself day 3 is the halfway mark, day 4 there is only one more day left, and on day 5 you’ve done it!
Hope It Helps!
That’s all from me this week. Hopefully, my blog this week has given you a better understanding of Iloprost, and for anyone who’s waiting for admission, my tips will help!
There be no blog next week, as we are hoping to get away in our van for the weekend. So I’ll be back the week after with hopefully some good news about starting my new treatment.
Until next time,
Goodbye for now
Emma
xox
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