How is it now @Monique?
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It’s still bleeding a bit but have appointment today at cancer centre to get it checked. Thank you for asking.
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Hope the appointment goes ok. Will wait to see how you get on 
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Hi @Monique,
Thank you so much for getting in touch. I hope you are doing okay?
I am pleased to hear that you have an appointment this afternoon to have your picc line checked. Everyone has given really brilliant advice.
Bleeding at the site can be somewhat normal due to the initial trauma when a picc line is first inserted but it is important to do what you have done and if it is actively bleeding, alert your team in case the dressing needs changes and indeed cleaned.
It also should be that you will be given a plan of picc line care moving forwards and this may be done whist you attend out patients clinic or indeed by a district nurse so it might be helpful to ensure you do have the out of hours contact numbers to call should you have any queries regarding your line overnight or at weekend.
Remember we are always here for you to talk anything through at all monique on the helpline or within this brilliant forum space.
Take Care, Lauran
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I got Picc line checked and it was all fine. I was worrying over nothing. It’s always a worry when you’re not sure what the norm should be. I was meant to get a Picc line diary but the ward had ran out of them. I am due to get the dressing changed next Tuesday when I’m in getting my admission paperwork done. Thank you all for your advice.
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Hi @Monique I can hear the relief in your post.
You were not worrying over nothing it is always worth getting issues checked out.
This is your first Picc line, the medical profession are working with them every day and they are there for all queries and questions.
I hope you get your diary soon, if not perhaps you might ask what you log or write in it and you could design your own !!
You did the right thing, now you can relax and have a relieved evening, be kind to yourself.
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Congratulations on your new job @Fullofbeans !! 
You’re an inspiration! It’s encouraging to think that new opportunities can come our way after a Stem cell transplant. I’ve enjoyed reading your posts and found them to be full of positivity. Wishing you lots of joy and satisfaction as you help bring optimism to others in your new role.
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Hi @Monique,
Thank you so much for updating us and i am pleased that you have been reassured. As @Erica has also highlighted- it is always best to seek advise if ever unsure and do know we are always on hand along with your on health care team should any questions arise. No question in this world of blood cancer is a silly question.
It sounds like you have a good plan moving forwards and i hope after what seems to have been quite a hectic few days that you are able to have plenty of rest now.
Take Care, Lauran
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Aw thank you so much, @Coastgirl! We’ve only got one chance at life (or two or three, in our lucky cases!) so taking opportunities when they present themselves is such a privilege. I’m very blessed indeed. I hope you have many interesting opportunities too, and it’s been a pleasure reading your posts. Xx
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Good evening, I am 16 weeks post donor transplant and was admitted to hospital last week because I am stuffering from graft versus host skin rash. When I arrived it was at Chronic Stage 2 and they increased my ciclosporene levels and given me tropical cortisone cream. Today I have been told the treatment is not reducing the rash and I am now at Level 3. There are various discussions going on but the thought is to put me on ECP and I wondered if anyone using the forum has undertaken ECP and whether the skin rash had cleared up? Any help would be gratefully received.
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Hi @Skye59. It sounds like you are having a rough time at the moment and I really hope they find a treatment that starts to make you feel better soon.
I hope somebody else might be able to share experiences. When will they decide on the next steps?
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There is a case conference on Thursday and I will be told after that what action they are going to take. It would be lovely to hear from someone who has gone/ is going through ECP to know if it helps. K
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Please let us know how you get on. Take care
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Oh @Skye59 that must be scary for you and it must be so frustrating to be back in hospital
I will copy the Blood Cancer UK nurses for you @GemmaBloodCancerUK @LauranBloodCancerUK and @Heidi_BloodCancerUK.
I hope someone might be able to help with personal experiences too.
Please let us know how the case conference goes on Thursday.
Look after yourself
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HI @Skye59 ,
Thank you so much for sharing this with us all & I’m so sorry your symptoms haven’t settled any. I am pleased to hear that your team are taking a multi disciplinary approach to deciding upon what the best next step is for you but also appreciate how daunting this can feel.
In terms of ECP, i’m sure there may very well be supporters within our blood cancer community that have accessed this treatment however in case it is helpful in the meantime i am aware that Anthony Nolan do have a blog on this- What’s it like having Extracorporeal Photopheresis (ECP) for GvHD? | Anthony Nolan.
In addittion to this, they also have a patients & family forum where previous discussions of ECP have been talked through- Patients & Families Forum | Anthony Nolan.
As others have also mentioned Skye should you ever wish to talk things through please do know we are here for you at any point- 0808 2080 888.
Best Wishes, Lauran
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Thank you so much Lauran for the links which I will look into. A dermatologist has been to see me this morning and have changed the ointments I’m using to see if they will make a difference. It looks like I will be In hospital for quite a while whilst they try and get on top of it. I know I’m lucky it is only my skin that is affected but difficult being in isolation when I feel well in every other aspect.
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Isolation must be very difficult when you are feeling well. Very frustrating for you! What are you doing to pass the time and to keep you occupied?
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