After years of dealing with varied hospitalizations, sickle cell, blood draws and IV sticks, eventually all our superficial veins (the veins that nurses are able to feel and poke) in our arms start to have scar tissue and deteriorate. Because sickle cell is a lifetime condition, there must be an alternative access point to give us the medicines, blood transfusions fluids and lab draws that we so desperately need.
The most recommended alternative is a Port-a-Cath (port for short). A Port consists of a reservoir (the portal) and a tube (the catheter). The port is implanted under the skin in the upper chest. It may appear as a bump under the skin in thinner people, and less visible in those with more meat on their bones. The catheter runs in a tunnel under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein). It is 100% internal so swimming and bathing are not a problem. The septum of the portal is made of a special self-sealing silicone rubber. It can be punctured up to one thousand times and therefore can be used for many years.
Before making the decision to have a port implanted, one should take note of the pros and cons. Here is a short list of the risks and benefits, collated from the Sickle Cell Warriors Facebook Page (which you should join if you haven’t already;)
Benefits and Pros
- Less Needlesticks: Instead of having to get poked multiple times during hospitalizations and blood draws, the port is accessed only once. A catheter is attached if you are hospitalized which allows use with just that first needle access. I once had 21 sticks within a 6 hour time frame just to get an IV in. Every skilled person the hospital tried, but no one could get me until they finally put in a PICC line. I’m sure that everyone reading this has had a similar experience with pokes. So this is a blessing.
- Faster Access to Care: Instead of waiting for hours before you get pain meds and treatment, the Port can be accessed in less than 5 minutes, giving you medical and pain treatment in far less time.
- So Convenient: When the port is not accessed, it’s usually not visible outside of your clothing. Most of the warriors who had a port loved it, and appreciated the accessibility.
Risks and Cons
- Infection: This can be a huge problem that may lead to you having to get your port taken out, another crisis, and possible blood sepsis if not addressed quickly. You should always be alert for signs and symptoms of infection i.e. high temperature, feeling feverish, chills, etc. Anyone who has access to the port has the possibility of giving you an infection. So it’s important to be extra cautious that only the very clean use it. Ask your nurse to wash her hands, and wear gloves (even if she says she did so already, make sure she does it again where you can see her). Even if she is “just injecting something”, make sure she ALWAYS uses an alcohol swab for no less than 1 minute.
- Rejection: Some people have very hyper developed immune systems that automatically reject all foreign substances. If you have a hypoallergenic response, contact your doctor immediately. A few warriors even stated that their bodies pushed the port out gradually over time due to rejection.
- Improper Usage: Not every nurse is able to access a Port and knows how to properly use it. They do not use it often, and most of the time only when the port is accessed. Several people explained that their port was broken because of an improper hub access or use. To retain the life of your port, make sure you ask for the PICC line nurse, or Oncology nurse to access it.
- Blood Clots: Your body naturally develops clots against any break in your skin integrity. As a result, your body may clot around the port and prevent it from working properly. To curtail this, most physicians recommend that you get your port flushed every 1-2 months (maybe even more frequently). If this is a problem, they may also have to put you on Heparin (a blood thinner) so that your blood is thin enough to retain the port and not clog up incessantly. This may also leads to other complications, so be careful. If clots are an issue, it may be better to get the port taken out than to try long term anti-coagulation therapies.
- Scars and Keloids: After the Port is implanted (or if it gets removed), you may have scars or keloids develop on your chest. Most women tend to have issues with it affecting your body image. [stextbox id=”custom”]The scars may fade over time but will always serve as a valiant reminder of your status as a warrior. Think of them as battle scars. [/stextbox]
That’s it. The 4-1-1 on Ports. If you need more information, check out this video below. Which ever decision to you (to get a Port or not to get a Port), ensure that you have all facts. Your doctor may just explain the rosy view, so hopefully, this post serves as a guide to give you the full picture.