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Subcut vs groshong/hickman line

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Smurf View Drop Down
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Joined: 06 Jan 2011
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    Posted: 13 Jan 2011 at 4:31pm
Dear All,

   My name is Andrea and I have had PAH for 3 1/2 years. I was wondering if anyone could let me know their experiences of having subcut treprostinol and changing to hickman/groshong line or vice versa? I have struggled with the subcut for 3 1/2 years and am considering switching but am a bit apprehensive. I am also a nurse and have fought to stay employed, currently doing 3 shifts a week. Are there any nurses out there working with a groshong/hickman line? I am looked after by the team at the RUH satalite clinic in Bath and the Royal Free in London.
   I'm 32, married to the most wonderful man, have an 18 year old cat and a gorgeous and beautiful god daughter Gracie (8 months old)!
Looking forward to hearing from someone, hope everyone is keeping as well as they can!

Take care, Andreaxx
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debsie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debsie Quote  Post ReplyReply Direct Link To This Post Posted: 13 Jan 2011 at 7:04pm
Hi Andrea,i personally can not help you with your post,but i just wanted to welcome you to the site and say im sure someone on here will be able to help you ,hope you do get some advice good luck and take care love Debbie x
hugs and kisses
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 13 Jan 2011 at 10:20pm
Sorry can't answer your question but Welcome
                                                                                               Rita x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lpegram Quote  Post ReplyReply Direct Link To This Post Posted: 13 Jan 2011 at 10:58pm
Hi Andrea,
 
Welcome to the site. Sorry can't help much, I have subcut trepostinil for 18 months now, don't get much problem from it so haven't thought about changing to hickman but I know some people have.
 
Lynsey x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jet Quote  Post ReplyReply Direct Link To This Post Posted: 13 Jan 2011 at 11:27pm
Just want to welcome you Andrea to the site. I too can't help with your question.  I am sure there will be someone on here who can help x
Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amandahale Quote  Post ReplyReply Direct Link To This Post Posted: 14 Jan 2011 at 1:44pm

Hi Andrea

Cant help with your post! But wanted to say Hi Smile I am 30 and also work as a nurse and midwife! I have not had any trouble as yet staying employed but I sure the day will come!
Take Care Amanda x
DX with IPAH 2008, VSD repair age 4.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Paulam Quote  Post ReplyReply Direct Link To This Post Posted: 14 Jan 2011 at 2:51pm
Hi its maybe not much help to you but I am on Flolan through a hickman line and still work in a school and after school club I find the pump bulky because it has to have ice packs but that may not be the same for you. I dont feel pain from the hickman line (iv heard that people get site pain from the subcut) and i find it easy to look after.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Smurf Quote  Post ReplyReply Direct Link To This Post Posted: 14 Jan 2011 at 6:19pm
Thanks for your messages so far! Glad to hear that there is another nurse out there working with PAH!! NHS is great at looking after you if not well but when you work for them, its a different story!! They tried to medically retire me at 29!! but over 3 years later, I'm still working!! Hopefully someone who has switched from sub cut to hickman will be able to give me some advice! I find the sub cut very painful and want to know about other options available to me!! Take care xx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tracie Quote  Post ReplyReply Direct Link To This Post Posted: 14 Jan 2011 at 8:18pm
Hi,
 Just a thought but have you discussed or thought about Inhaled Ventavis, ( Illoprost)
 Also what aree you using to control pain from sub cut??  I have a little knowledge of this sub-cut and the pain it can cause...
 I dont have personal knowledge of Flolan, but i do know it is what is classed as the gold standard in therapies for PH....
 
 Take care Tracie x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Smurf Quote  Post ReplyReply Direct Link To This Post Posted: 14 Jan 2011 at 8:32pm
I'm WHO 2/3 so have to have treprostinol either via subcut or hickman, along with sildenafil, ambrisanten and various other meds!! Have tried lots of things for subcut pain, plo gel, emla, aloe vera gel, paracetomol, tramodol, fentanyl etc etc!! Nothing seems to work, it also makes my tummy swell up like a football!!so am on all gold standard treatment!! xx
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Tracie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tracie Quote  Post ReplyReply Direct Link To This Post Posted: 14 Jan 2011 at 10:19pm
Sorry to hear you having problems..
Have you also tried hot water bottle, or even ice pack on site ? 
 Leanne used, Tremadol on site change day and day 2, Co-Codamol for a day after.... Also carried hot water bottle around on days 1 and 2....
 Have you tried other areas on your body rather then your stomach, sometimes giving stomach a rest can help. although it may be more painful in other parts, but could also be less painful.... Trial and error i think....
 Leanne used Sub-cut treprostinil, Sildenafil, Bosentan, Inhales Illoprost and Warafrin.... So she was on 4 Major therpies .....
 Have you thought of changing over to Hickman line, how do you feel about this?
 
 Hope you are doing ok, take care Tracie xx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lpegram Quote  Post ReplyReply Direct Link To This Post Posted: 15 Jan 2011 at 12:52pm

Hi Andrea,

That sounds like you have a lot of pain with your subcut, it's so tyring when you're in pain isn't it . I was WHO 4 before treprostinil, now i'm WHO 2. I hope you find someone who has changed to Hickman who can give you advice.
 
I've not tried a hot water bottle, think I might try that when I change sites next.
 
Take care
 
Lynsey
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nicky Quote  Post ReplyReply Direct Link To This Post Posted: 15 Jan 2011 at 2:12pm
Hi,
I've had the pleasure of experience both. I had three hickman lines with iloprost, but my body rejected all three. Then went on the the sub cut. I found this very painful, and only had it about four months then I was lucky enough to receive a transplant. This was 7 years ago, so things may have changed.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kathryn Quote  Post ReplyReply Direct Link To This Post Posted: 16 Jan 2011 at 10:20pm
Hi, I don't know if this is any help, but I was switched from inhaled Iloprost to flolan via a Hickman Line a few weeks ago. So far it has been more convenient as the drug is only swapped every 12 hours and it is easy to carry around - slots easily into a small holder for the pump, drug and wires - which can be nicely disguised under your clothes. I do not have to use ice packs so no problem there and although the site wound is new and tender still, does not cause pain but needs to be dressed and changed each week. I am cautiously optimistic it is going to improve me, but have given up work recently(as a primary teacher) as I am class IV and have regular blackouts and severe symptoms. Kathryn     
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Miriam Quote  Post ReplyReply Direct Link To This Post Posted: 17 Jan 2011 at 7:39am
Sorry to hear about your health and symptoms.  Take good care of yourself. Hopefully the Flolan will help you feel better.
 
Glad you're remaining positive.
Live, Love, Laugh!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kathryn Quote  Post ReplyReply Direct Link To This Post Posted: 18 Jan 2011 at 7:44pm
Thanks Miriam, so far so good, every week has got better since xmasSmilex
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