This is what the device looks like and how it works. It will leave a small rise under the skin, about the size of a quarter, where the port is accessed. All this, and you still get stuck with a needle each time - no thanks, not for me. Image from keepwerking.co.uk.
They are most often used with cancer patients for chemotherapy treatments. The chemo is so strong it can cause tissue damage, so a port is the safest way to go. Lumizyme is basically a synthetic enzyme and will not cause tissue damage so inserting a new IV every two weeks is not a problem and a port is not utterly necessary, but it is an option for Pompe patients who have difficult veins or who just don’t want to be “stuck” every other week.
Having a port put in requires surgery and I don’t do well AT ALL under anesthesia. When the did my second muscle biopsy they surgeon decided for some reason to put me out – no one knows why he did this for a fairly simple (albeit, painful) procedure. I had so much trouble recovering from that, my pain and headaches got immediately worse following the surgery. My “theory” is that the surgery “angered” the Pompe. I can’t imagine going through all that again, which could set back the little progress I have made, just to avoid some needle sticks.
It is a personal decision, and everyone is different. Now, down the line I may change my mind as we never know what will happen, or what the future holds for Pompe patients. But for now, I will continue my role as a human pin cushion as the risks don‘t seem to outweigh the benefits for me.
If you have questions about having a port put in, talk to you doctor about the benefits and risks. Like I said, I’ve yet to meet a patient who doesn’t absolutely love having a port.
I haven’t seen any other blogs or post of other Pompe patients, but I think you are doing a great job. This last post and others like it, should be of help to other Pompe patients. Keep up the good work.
Love ya,
Aunti Jan
Thanks Auntie! I wish everyone had an Auntie as great as you. Someone who braves blizzards and brush fires in search of a diagnosis!
Hey
I must say I agree with you. The port Idea is great but just not for me. So I too will continue to be a human pin cushion with you.
My friend who is a cancer survivor just posted this on Facebook:
“It’s been almost 5 years since I had my port removed and my nerves are STILL starting to wake up! It’s driving me NUTS!”
But she is one of the ones who loved having it while getting treatment.
“Love” may be a bit of an overstatement, but I am definitely pro-port!
Although portacath insertion is done surgically, it’s done mostly under conscious sedation. When I had mine put in, I felt like I was camping (the blue drape reminded me of being in a tent) and I had overslept while everyone was up and about outside.
I completely understand the waiting until necessary, though, to go the way of a port. I waited 20 months and was actually DONE with chemo when I broke down. It was a great alternative to being stuck every three days, in my case, but 5 years later, I am still reminded that I had one. Good luck!
Love ya!
Lonnie
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I do love my port, it just makes my life easier, and there is talk i may be able to use it for the injections for bone scans now as well (as opposed to the IV. Like someone mentioned above, I was not completely under for the placement of my first port (the second was done during a different surgery and I was already out).
But again, it’s not for everyone.