I noticed their was wasn’t any patient tips online or on The Mighty. Getting a port can be really overwhelming and I wish I had these tips in the beginning.
1. Their are so many options for supplies. If you don’t like your needle or dressing just ask your infusion center or DME company.
2. You can be completely in control of your port care or not. I personally access my own port at home because that is what make me the most comfortable, but if thats not your thing its ok. I do recommend to ask a healthcare professional(a nurse) to explain/teach basic aseptic technique so that know when to call someone out.
3. This is not to scare you, but sepsis and fibrin sheath/blood clots are ALWAYS a possibility don’t be afraid call out someone if their not using correct sterile protocol or heparin(unless told otherwise) a embarrassed nurse is waaaay better than being in the ICU because you have sepsis.
4. talk to your doctor about what the plan is in case you have issue with your port.
5. If your accessed multiple days or weeks at a time you’ll need to figure out your shower schedule or lack their of since you can’t get your port wet while it’s accessed. This is totally dependent on your preference. You can buy a detachable shower or disposable covers that are supposed to keep water out. Some DME companies will provide them if you ask. What I do is wash my hair as needed in the sink and use wipes or a wet wash cloth everywhere else (except my port site) to get some sense of cleanliness.
6. Most people don’t care or notice that you have port. I’ve have a port for all most a year. I don’t think I’ve had anyone ask or stare at my port even when accessed. Even if they did so what.
7. If someone misses your port more than once, twice at most then ask for someone else.
I hope this helps someone. If anyone has questions let me know. #ChronicIllness #IVIG #LivingWithPOTS #IVsaline #TPN #Dysautonomia