The following 10 points about “ports” that are installed in patients who need to endure a lot of blood drawing come from my wife, Chey Cobb, who was diagnosed with hereditary hemochromatosis or HH in 2008. As you may have read elsewhere on this site, HH can result in your body having too much iron. This can be measured by checking your ferritin level. Ferritin is “a ubiquitous intracellular protein that stores iron and releases it in a controlled fashion”. (Wikipedia)
The standard treatment for people with excess iron, as indicated by higher than desirable ferritin numbers, is to draw blood. When you give blood it removes iron from your system, and that is one reason the Red Cross does not allow you to give “whole blood” more than every 56 days. But people who suffer from iron overload may need to be bled many times per month for a period of months in order to reduce excess iron (as determined by repeated ferritin tests). The point is, frequent blood draws can be hell on your veins.
Having blood drawn for medical reasons is called a phlebotomy. When blood is drawn for therapeutic purposes, as in the case of HH patients, it is called therapeutic phlebotomy (TP). One option for those whose veins are hard to find, or who find they don’t tolerate needles very well, is to have a portacath or “port” installed:. This a small medical appliance that is installed beneath the skin and a tube or catheter connects the port to a vein. Recently, several people on the Facebook Hemochromatosis page have asked about ports. What follows are my wife’s experiences with, and thoughts about, this technology:
1. If you are scared of surgery and/or find it difficult to recuperate from invasive procedures, don’t do it.
2. Don’t listen to all the hysteria and horror stories about ports. Millions of cancer patients get them every year as standard procedure. They need to provide doctors with access to their veins for their chemo treatments and a port relieves the stress of trying to find a new vein every day.
3. If you have to undergo an “aggressive” series of phlebotomies (more than once weekly) and don’t get a port, your veins will become scarred and it will be more difficult to find a good one. If your veins are small and/or hard-to-find, definitely consider a port!
4. There are external ports and under-the-skin ports (called, “portacath” or “subcutaneous port”).
5. External ports need to be kept very clean to prevent infections. Under-the-skin ports sometimes get infected, but the infections are rare and are usually easily treated with antibiotics. (The under-the-skin infections were often because the patient had an infection already in his body, but the symptoms hadn’t yet shown themselves.)
6. There is a good web page for under-the-skin ports, again from their use with cancer patients. (When I had my port for HH phlebotomies it was all handled through the oncology department, which sometimes helped me keep my own problems in perspective.)
7. The surgery for either port is done on an out-patient process. The procedure only takes 45 minutes to an hour.
8. The surgery itself is not painful, but the recovery may take a day or two. About eight hours after the procedure, you will feel pain, but will probably have been given pills for it. You may be advised to sleep in a lounger with your head raised for one or two nights. The pain goes away completely after a couple of days.
9. The ports are placed near your collarbone. The external ports look like a test tube and a pipe hanging from your collarbone. The under-the-skin ports appear as a quarter-sized “bump” under the skin.
10. The external ports can be seen through shirts, but the under-the-skin types usually can’t be seen. (When I had my port I would wear tank tops and no one noticed the bump.)
Chey concludes: These points are based on my generally positive experience with a port, your mileage may vary. In the end the choice to get a port may depend on how squeamish people are: “I tend to see complaints from people who were apprehensive about getting them, but not many complaints from people who seemed to be ‘braver’ about the whole thing.”