With My Port-a-Cath Placement Complete, I Look to Next Steps
What the insertion means for my transfusions, iron overload, and self-esteem
I’ve shared that I’m on a blood transfusion program as part of my sickle cell treatment. There are two key types of blood transfusions: blood exchanges and top-up transfusions, which are quicker and delivered through a cannula, usually inserted into the hand. I started undergoing top-up transfusions as an interim measure due to the pandemic.
One of the main problems with this type of transfusion is the risk of iron overload. You see, each unit of blood has an amount of iron in it, so over time, infusing units of blood means I’m also infusing excessive amounts of iron — iron that my body struggles to break down and excrete. I suffer from iron overload now and did so before moving to top-up transfusions in 2020.
Well, I had some good news recently: My top-up transfusions have come to an end. I’m moving back to blood exchange transfusions long term.
This is possible because I got a port-a-cath, a cannula that’s placed under the skin and used for long-term delivery of IV medications, including the infusing of blood. I’d been waiting over three years for this, and a few weeks ago, I finally received the call that I’d get one. The surgery happened a few days after. My port-a-cath, which can last anywhere from two to 10 years, now sits close to a jugular vein.
The surgical wound hasn’t completely healed yet, so I’m quite anxious about whether I’ll end up scarred. I guess that’s inevitable, unfortunately.
Though the port-a-cath sits under the skin, it’s visible if it’s not covered. Sickle cell disease has taught me that everyone seems to love a show; if there’s anything visibly different about a person, others will stare unapologetically. That was my experience when I used a Desferal (deferoxamine mesylate) pump.
I’ve spent the past few years extremely worried about what the port-a-cath would look like and how it would affect my choice of clothing. Speaking candidly, the insertion has had a negative impact on my self-esteem. I’m extremely conscious of it being visible to all, so I’ve stuck to wearing clothes that cover my full chest area. That’s fine for now as the weather is quite cool, but I worry about how I’ll feel in summer.
As well as making me feel more comfortable, covering my site is great to protect it and prevent infection. If I’m honest, I don’t see a time when I’ll be comfortable and confident about showing my port publicly. I’m not certain if that’s a good or bad thing.
Notwithstanding my concerns about the aesthetic of the port or the unpleasant experience of the surgery, I’m happy that I finally have the port-a-cath now. Not only will the inserted port allow easier access to my veins, but it allows me to return to blood exchanges, which are better for me than top-up transfusions.
Moreover, and perhaps even more important in my opinion, the port-a-cath means that there’s a foreseeable end date to the iron chelation treatment that I’m on. I’ve had iron overload for so long, I don’t think I can remember life without that side effect. I hope it means I won’t be as fatigued as I’ve been the past few years.
The iron chelation treatment can hurt my eyesight and hearing. The buildup of iron in the body can cause problems to the liver and heart. I presume that in time, all the concerns surrounding my hearing, eyesight, and liver will be resolved, too.
As with any foreign object in the body, there’s a risk of infection to the site, as well as that the port could be dislodged. Thus, I need to be careful and only allow staff who are adequately trained to have access to my port. I also must wipe the site clean daily with alcohol wipes.
My first transfusion using the port is scheduled for two weeks’ time. Here’s hoping all goes well.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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