I’ve been doing some soul searching, wondering why I feel the need to share with the world that I suffer from Crohn’s Disease and have had a port-a-cath placed to receive my maintenance drug, Remicade. Seriously, I wondered why I wanted to share such a personal thing. I’m actually a pretty private person, yet here I am telling such a personal story on the internet.
I thought long and hard about it. Why did I feel the need to share it?
Here's the story . . .
Two doctors and two nurses told me to consider getting a port-a-cath. They all said it would make my life easier. Since Remicade is keeping me in remission, I have to stay on the drug. That means infusions every two month for however long it works. That is years of IVs. But I was still unsure. After all, health care professionals don’t always look at the patient. Does that surprise you? It shouldn’t. Things become routine—patients become routine, too. I am just one of thousands of patients, and a port-a-cath is nothing to them. They see them every day, but they don't live with them.
We are now in an age where we have to be our own health advocates. And that’s what I decided to do.
So, I did all kinds of research on the internet. I even watched the actual surgery of a port placement on YouTube. I read about all the risks and all the benefits, but I was still unsure.
I watched more videos about accessing the port during treatments. I read blogs and went on chat sites. I wanted to know exactly what I was in for. Many of the stories I read were what could go wrong—infection, malfunction, etc, and I was still undecided.
Port-a-caths are usually associated with cancer treatments. Oftentimes, cancer patients have to receive chemotherapy every week or even every day. The port makes the treatments easier. And of course, I thought, I only get my treatment every two months. Do I really need to have a port? Yet, every time I went, I was filled with anxiety. Even if the nurse could find a good vein and start the IV, sometimes it would stop mid-treatment. There was always a fear that one day I wouldn’t receive the drug at all.
Finally, I went to speak to the surgeon. He told me everything I already knew, but it was his wife who finally convinced me. She had had a port, and she could give me a first-hand account of her experience. I think that’s what I was looking for, and I think that is why I wanted to share my own experience--maybe someone somewhere will read this and not be so afraid.
Port-a-caths aren’t just for cancer patients. So many people need treatments for so many things, and many have port-a-caths. At first, I saw getting one as a sign of illness, but for me, it is a sign of wellness—something that will help keep me well. I am not just dealing with the physical aspect of the disease, it is also the emotional aspect, and if I could make my treatments easier, less stressful, and less painful, I was willing to try it.
I had my first treatment with my new port on Saturday. There was absolutely no stress and no pain. I was told that the first few times it is accessed, it might be painful. I felt nothing at all. I should have done it years ago. If I had, maybe my veins could have been saved. But I am thankful I have it now.
So I wanted to share my story for this reason: You must be your own advocate, search for your own answers, and do what is right for you. Seek out guidance from people who know, and stop listening to negativity from people who don't know.
While I was debating on whether or not to get the port, I remember telling someone that I shouldn't get it just to make my life easier. I remember he answered something like, "why not?" I was surprised by his response, but it got me thinking--why not? After all, isn't Crohn's hard enough? Shouldn't my treatments be easy, if they can be?
Of course, the answer is yes. And that's exactly what a priest told me a few years ago, when we were talking about suffering . . . Crohn's is a big enough cross to bear, he said, so there's no reason to look for more suffering.
Yes, everything is connected, and each person I mentioned played a role in my decision.
And I will admit the doctors and nurses were right!
I won't say the surgery was painless. It wasn't. I still have pain now and then where the catheter enters the subclavian vein. (I told you I did my research.) But I can deal with that, knowing it is temporary and I can receive my treatments without stress and anxiety.
So now, I will be another port-a-cath story on the internet for someone else to search out.