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Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

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  #1  
Old Thu Apr 20, 2017, 10:22 PM
Naive Naive is offline
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Location: Gold Coast, Queensland, Australia
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Replacement of portacath.

After 7 months of complaints that my arm, chest, shoulder and neck hurt when my port was being used. With bruising, swelling, leaking and skin discolouration. I had a portagram performed which I was verbally told was "normal". So I persevered through two more treatments with awful pain. I then refused point blank to have them use my port. Today the oncologist informed me that the portagram showed the port was old and worn out and leaking and extravasating and needs urgent replacement. I'm so frustrated that I had to refuse for them to use it before any action was taken.

Now, because I'm overdue for treatment, they are going to remove the old port and replace it in radiology under local anaesthetic on Monday. I had the last one as a full general anaesthetic in theatre. Has anyone had a port replaced in X-ray? I'm a bit nervous, especially as I haven't had a lot of reason to be confident in the system lately.

Thanks

Carol
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Old Fri Apr 21, 2017, 08:12 AM
lisa3112 lisa3112 is offline
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Hi, sorry you have been treated so badly. Not sure if its the same but I had a hickman line inserted in radiology. They injected a local anaesthetic and used fentanyl and midazolam IV. It was painless just pressure. Good luck!
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Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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Old Yesterday, 11:06 PM
Naive Naive is offline
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Thanks for your answer Lisa. I've decided that as I don't have any choice, then, there's no point being nervous. If it needs doing, it needs doing and that's all there is to it. Luckily I don't have any fears of needles or procedures etc so as long as the Doctor uses plenty of local anaesthetic I should be ok.

I'm relieved that the old port is coming out because I've been getting lung problems when it's being used and I've just read that clots in the blood vessels near the catheter tip (SVC) can break off and cause very small PEs. That would explain the X-ray changes, crackles, wheezes etc, without fever.

Thank you again.

Carol
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