I saw the surgeon on Wednesday afternoon. He flushed it but did not heparin lock it. Again, that night my port site began to swell and I was in pain again. Then on Friday my nurse came to the house and was able to flush it somewhat and attempted to heparin lock it. Things did not go so well. I was in extreme pain and by the evening my port site had swelled to the size of a lemon. Johnny took me to the ER the next day where the associate foe foed me, and sent me home.
Week three began this week. So yesterday my nurse came again and had trouble with the port. She was concerned I had developed a clot and upon calling the docs office the worry began to seep in finally. So I was sent to the hospital for a special test where they shot contrast directly into the port. Well, they did find something alright.
The doc there came out and was as sweet as ever. Told me I wasn't going to like what he found. For starters he feels there was probably a clot at some point but it has broken up on its own, a good thing. Great so what is the bad news? The port has to come out! Yep you heard me right. See I am not crazy like the doc tried to make me feel. What is wrong is there is a perforation in the line. A what? This is what has been causing all the pain. The ivig, the heparin and the saline has been leaking into the tissue. It was plain as day on the screen in front of me. Well there was the reason they could flush it some what, get a blood return, but also why it wasn't working. Been there since surgery is my best guess. So why hasn't anyone found it? Well because they were too busy trying to act like nothing was wrong. Maybe the fact that I came out of surgery black and blue and swollen should have been the first clue! Maybe the fact that I have had one of these before and had none of these issues was another clue something was not right? I don't know , just brain storming here.
So here I wait. Stone wall in front of me. Once he knew it wasn't a blood clot causing the problem, he was un reachable and has been ever since. After the results were in yesterday I was told the doc was back in surgery .Later the hospital called me and told me to call his office first thing in the morning. So here I am waiting again. I called this morning because no one picked up a phone to fill me in. You would think they would right? Nope but I have just heard from one of the office staff, not the doc, not the nurse but a receptionist because they can't dial out at the other office today. So I have been told that my port can wait and given no info on the whys or even asked to come in to be seen. this is sad and nuts at the same time. So here I am with a broken port and no one wants to take responsibility or even talk to me about what is happening to my body! Crazy, sad and quite frankly immature! Sorry if I seem flustered.
So once again, the adventure continues....
So here is the update:
My mom stepped in this afternoon and finally got someone over there to speak with me. I still have yet to speak with the doc himself, but will do so soon. Bless my mom's heart she talked to the RN herself and explained how I was still sitting in the dark almost 24 hours later. The nurse was kind when she spoke to me and faxed over a release and letter explaining my port could not be accessed due to a faulty device. ( We plan to get away for a few days. I really, really need it after all this.) So I guess that is how it is being explained. I really don't think there is a way to know for sure. I am just glad to know I am not a crazy, whinny , over dramatic woman! They know now, I know now and once life is somewhat sane the device will come out.
For three weeks I have been living with a hole in my line and it has been painful. Hopefully my shoulder and chest will start to heal and I will be back to my old self soon!