Hi everyone
Was just wondering if anyone has had their iloprost infusion go ahead as scheduled? As all my other appointments at the Royal Free have been cancelled or re-scheduled due to Covid,I was just wondering if my booked Iloprost week on October would actually go ahead as planned? Would love to hear from anyone who’s treatment has taken place and how it went with extra precautions hospitals are taking. Many thanks 😊 xx
Hi
I am booked in as well in October at Royal Free and I was also wondering what will happen. It will be interesting to see what responses you get.
Sandra
Hi Stella
As far as I’m aware now that patients at the Royal Free are back on PITU ward the Iloprost infusions are going ahead and have been since July. The only difference is that are only having 12 Iloprost patients rather than the usual 16 as the chairs are all COVID spaces out. I’m also booked in for October at the RF and have been going regularly up there all year even in COVID and they are very through and COVID prepared.
Maybe we will be there on the same week let’s just hope the second wave doesn’t come at this time.
Thank you so much for your reply and all your info - really appreciated. I’m guessing that you’re not allowed to have anyone sitting with you whilst you’re in ( my mum usually spends the week with me). Am not looking forward to wearing a mask all week must admit, but totally understand the need to. I’m booked in for the week of 12th October.
Thanks again and sending you my best wishes. x
Hi Stella that’s the exact week I will be having Iloprost. The premier inn is open and the last I heard the restaurant was the only part closed so you had to get food. You could bring that back to your room. I’m not sure if your allowed someone with you as they have removed the side chairs. But I did see a patient with company. I would call them and ask if your mum can sit with you for the week.
Hi Cole57 - we will have to try and meet that week 😊!! Thanks again for all your helpful info. I do struggle through the Iloprost week and am very thankful I only have to have it once a year.
Take care and maybe see you in a few weeks! I’m usually in Room 5 😁
Best wishes
Sarah x
I had my iloprost as planned in may not at the royal free though at my local hospital. I was very surprised and happy it went ahead. The nurses are wearing ppe and you have to get your temperature checked at the door before your allowed in.
I have been back monthly since for my port to be flushed and now patients wear masks too.
I feel safe when at hospital, my day unitnhas always had impeccable infection control though even before covid (I’m a people watcher so always watch the staff are doing and their cleanliness is always perfect)
I have my next iloprost in a couple of weeks and the new rule now is you need a covid swab 72 hours before and them have to self isolate - so will be 7 days self isolating. This makes it a bigger commitment than before if that makes sense, blocking out three days before. Before covid although I would be feeling rather “roapy” I could also do things in the evening if needed like pop to the shop, a meeting, see a friend etc I also usually stay at my parents house on iloprost week - mainly for company as I live alone. But I can’t do that now - I have no idea what the rule will be for people who live with others I mean surely they can’t all have to take 7 days off?
It will also mean another day off work as the swab is 3 days before admission day, this time I’m on annual leave so haven’t had to broach the subject with my manager yet but will have to. Don’t get me wrong I fully understand the need to test patients and to be cautious etc it’s just like many others the reality of what that will mean.
I am also 95% certain I will not have covid as I have antibodies and I am also excessively careful
Shame the research wasn’t clearer that you can’t catch covid twice, it looks extremely unlikely but I suppose they just can’t be certain yet.
I am not against being tested or hospitals being careful at all it’s just getting used to how that will impact on the iloprost routein.
Btw I caught covid at work in the early days before we had ppe (I work in the nhs) it wasn’t as if I caught it despite all of the effort I put into keeping safe.
Hi Rp321 - thank you for your reply and letting me know about how your recent hospital treatment went. Good to hear about all the measures being put into place for patient safety. When I have Iloprost treatment at the Royal Free I stay in the Premier Inn with my mum. Will be interesting to find out if that is going to be possible this year. Don’t fancy having to deal with the week on my own 😕. Anyway will have to wait and see.
Thank you again for taking the time to reply - much appreciated x
Hopefully your mum can stay with you at the premier inn !
My day unit has never allowed visitors in the treatment area so my mum took the week off work the first time I had iloprost at my local hospital (I had a previous week as an in patient at the royal free) so she could sit with me only to be told it wasn’t allowed.
It’s ok though the nurses are great at my day unit and now I have been going so long I know all the nurses really well so it doesn’t feel like I am alone because I have them with me if that’s makes sense. If they are not busy they just come for a chat etc. I also have got to know some of the other patients too. It’s acutally a haematology oncology unit which takes rheumatology patients as there’s is no where else for us, I have never met another iloprost patient though apparently there are one or two others during the year. I would love to have other people “like me” there too but I have never met anybody else.
Hi 1stella I am booked in for my 3 days of Iloprost starting a week on Wednesday, I will let you know how I get on, take care x
Iloprost - side effects
Iloprost infusion
Iloprost
