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Port experience?


Sheri Lynn

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This morning my Bard single lumen power port was placed during surgery.  So far I'm sore & uncomfortable if I stretch my arm out very far.  I go tomorrow, if the weather allows, to be trained to access it.  I'm very unsure if what to expect pain wise throughout the recovery period. To be truthful I'm kind freaked out about displacing the catheter by to much movement. Anyone have any experiences to share?  I'm hoping it week be worth it & by hearing others experiences I'll be more prepared. 

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It has been recommended for my daughter to get one of these.  She has Erythromelalgia along with EDS and Dysautonomia and has been to the ER 20 times in the last 6 months.  Her veins are not good and she has one left for the nurses and lab techs to administer medication and draw blood.  Are your veins like that too?  If you wouldn't mind sharing, how long was the procedure to implant this?  I'm so sorry you are sore and uncomfortable.  Procedures like that can be uncomfortable.  I hope this works well for you and that things settle down quickly.

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My veins blow and/ or collapse at the slightest thing. I do Iv infusions twice a week at home, hence the port.  The surgery took about an hour in or. Once I could tolerate drinking and could go to the bathroom I could leave.  I got there at 5:30 and left about 12:00. The soreness is much better today and to be honest I've only taking meds (other than Tylenol)  at night because laying flat hurts.  I've had difficulty breathing today but I think that is because I've done more and been outside and it's 11 degrees here lol.  I showered, did light cleaning and went to the grocery today so pain is pretty much gone, but very sore.  I also have issues with knowing that something is I'm my body and my major vein so I'm sure when I think about that I notice much more.  I will access it the first time on Monday and I'm being that holding the port stay will be pretty painful.  I hope your daughter finds something that helps ease her symptoms.  I don't know if EDS would make a difference (they've suspected that with me but since treatment is the same I've not dine the testing) but I would certainly ask.  Good luck and if you can keep me updated on your daughter. 

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Hello, don't know a whole lot but thought I'd share my experience. I had a port placed about 2 years ago buy it only lasted ten days, I became septic and the port had to be pulled. 

Having it placed was not to bad for me, they did mine in Interventional Radiology without anesthesia or sedation. Just a 2 inch cut, with local anesthetic, so was not to bad, my last picc was more painful and problematic. Took about 45 minutes and because they didn't give me sedation I was not in recovery long. 

I had trouble with healing afterwards, my usual, it started to reopen and I also form keloids with pretty much any wound. I have been dx with JHS (Geneticists didn't want to label it EDS although he said another Geneticists would.) not sure if this plays a part, Geneticists said it is different than typical EDS skin problems.

Otherwise it was not to painful, ice packs do help as long as not applied directly on the port site. I was ok with just Tylenol and Ibuprofen. For my port, and most I know of, it needs about 7 days to heal before it can be used. 

Currently using a PICC for daily hydration and IV antibiotics. Unfortunately they are no longer able to do piccs on my left side and very limited on the right. Because of this they are considering a port but not sure because of how easy I get sepsis. 

One thing I would stress is to keep it as clean as possible and be aware of what needs to remain sterile. I have been warned more times then I can tell about central lines and the threat they pose for infection. CCs are so close to the heart that some people develop an infection on the heart when they have sepsis... I never have but is a real concern right now because of the addition of a pacemaker. 

Wish you all the best and hope your experience is better than mine!

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