Smart Port Access- Chronic Illness treatment/ Pots syndrome

[@lesliehyde]

I had my port placed in March of 2018. It was a god send for me because I have crap for veins and typically had 4 to 6 CIDP exacerbations a year prior to the placement until I started maintenance IVIG (400mls/month dosed at once per month intervals). Since starting the IVIG maintenance therapy I have 2 to 3 exacerbations a year. My treatment team decided that it was best that I was trained in accessing and caring for my port along with running IV infusions (via IV pump, I use a Sigma Spectrum) so that way I could keep my independence without waiting on a nurse every two weeks (although now every week) to access the port. My treatment team told my insurance that it would be cheaper for me to be trained for port care as opposed to nursing coming every week or me going to an infusion center, needless to say- they agreed. As for accessing the port, while it definitely doesn't feel good (pressure sensation), it only lasts about 4 seconds while pushing in the needle which I do in one continuous movement while I breathe in and then I don't even feel the needle unless pressure is placed on it. Of course having decreased nerve sensation where my port was placed on my chest helps quite a bit.

[@paintedbystripes4033]

I am so glad it has been so much help for you! They really are a huge help! I have had my port accessed with and without lidocaine. I get throbbing in my port site when accessed without for a while after. I know I can handle it both ways, but I have had so much chronic daily for so many years that I am at the point that I choose to use the lido.

[@jessicajarsak7812]

Use adhesive remover. There’s a spray or adhesive remover wipes. It helps a lot.

[@paintedbystripes4033]

Thank you ! I have used them before. Maybe I’ll have to try them again.

[@jennifermcmillan9518]

Thank you for this btw. I didn’t know I had to have a tubing connector and I’m stuck and going to have to cut the line off and change out the needle. They don’t have any nurses available today to change it out. Soooo, I’m going to try and access myself. 🤞🏻🤞🏻🤞🏻🙏🏻🙏🏻🙏🏻

[@paintedbystripes4033]

Oh no! I am sure you did great! I just like to walk through the steps in my head before I access myself. Ideally, I have someone close by just in case I need something done that they can help with but still be nonsterile. That way I can stay sterile and don't waste supplies or break my sterile field.

[@jennifermcmillan9518]

@@paintedbystripes4033 I did ok. But something keeps happening in my sleep where the needle gets dislodged or something, even when the nurses do it. I ordered larger needles, so hopefully that helps. I’ve been getting 3/4” from home health med supplies so I ordered 1”. Also, my skin is RAW from the dressing. Any tips? I ordered some Tegaderm with CHG gel in them on my own through an online med supply store so hopefully that changes things.

[@NA-dr5qh]

Correct me if I’m wrong but I think she broke the sterile field severeal times here, first when she touched the syringe to prime the line then touched the line/dressed it after, 2nd when she put her hand behind your back maybe? Then touched the line. I know the most important thing is to maintain sterility until the needle in, but I do believe dressing while still sterile is necessary too, I just got a port and I’m in the medical field and it seems interesting how everyone seems to have their own way of accessing their port

[@paintedbystripes4033]

Sterility is important for sure! I will look closer at the video and if there are still concerns I’ll discuss with her and post a new video.

[@jennifermcmillan9518]

Could you describe the taste? I’m getting a port next month for POTS. I don’t have that reaction with IVs right now. I was wondering if it’s the placement that causes the taste.

[@paintedbystripes4033]

I don’t think it’s the placement necessarily. I can smell and taste it with regular IVs as well. Just maybe not as strong with regular ivs. I get two different tastes and smells with different saline manufacturers. One manufacturer makes it taste and smell like skunk. It’s really gross. The other taste and smell is salty. Maybe it is a sensitivity of your olfactory system that determines whether you can taste and smell it. I hope that all goes well with your port! It has really been a Godsend for me! Let me know if you have any other questions!❤

[@jennifermcmillan9518]

@@paintedbystripes4033 ok. That makes sense. I can smell things that no one else in the house can smell. I think right now, since I’m so dehydrated, I may not notice the smells. I’m just so relieved to be getting fluids. I’m actually looking forward to getting the port. I’m in TX and the summers here are brutal for POTSies with the humidity. I’m very close to bed bound unless it’s the day after I get my IV. I’ll get a lot of my life back.