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Frustrated - the port story continues

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

After a long wait and many tests, I was thrilled to finally have an attack plan in place. I was supposed to start FOLFOX tomorrow.

I had a Power Port put in October 1. Due to complications I was sent to the ER on Friday night. I spent the night in the hospital October 2 and 3. On October 4 I had surgery to remove the Port, and was sent home Sunday night.

I went to the surgeon yesterday. No one can seem to make up their mind what is going on.

The ER doctor and nurse both said I had an infection. The infectious disease doctor said I had an infection. The hospital doctor that checked me in to my room at 2AM said I had an infection. When the surgeon on call saw me she said it was too hard to believe I could have an infection so soon. So everyone but the surgeon thought it was an infection. The surgeon is the one that said to keep me on antibiotics overnight and recheck the next day to decide. After talking with the infectious disease doctor on Sunday, she said it needed to come out. So she believed it was infected at that point too.

But today when I saw the surgeon that put my port in, he said in the 100's of ports the doctors in their office put in each year, there has only been one to get infected quickly, and that one was 3 days later. Also my cultures haven't shown anything yet (but they did start IV antibiotics before taking cultures so that could have kept them from growing). So he doesn't believe it was infected. But he didn't see it before - so swollen and red and painful - a very large area that slowly shrunk down after starting antibiotics. He doesn't have an explanation for what happened either - maybe a blood vessel that broke open, maybe just more surgery trauma than usual. I don't think he'd say that if he saw all the swelling and redness, and felt the heat in the red areas. But all I could think when he told me he didn't think it could be infection is WHY THE HELL did you guys insist on taking it out? Well, "if there is any chance of infection, it has to come out."

The oncologist that visited me said that the infection should clear within a week, so I could have another port put in a week later, and just be a week behind for chemo. But the surgeon today said no way. This wound has to be healed first. Besides making blood counts low so infections are a problem, chemo also messes things up so you don't heal easily.

I could get a pick-line put in and start chemo before I get a port, but the surgeon still says that would not be smart - I need to have my wound heal first. Then I can get another port put in. He won't commit to how long it will take me to heal. I go back to see him on Friday the 16th. So I won't be starting chemo this week, or next week.

The oncologist that saw me in the hospital says most of her patients start at week 7 after surgery. I was just doing so well after my surgery that I was ready earlier at 5 weeks. So she isn't concerned if I don't start for a little longer. They like you to start between week 6 and 8 after surgery. So if I don't heal in time to get another port put in by the last week of October , I'll have to get a pick line and start chemo, and then sometime in between they'll put a port in. I am really hoping to just be pushed off to week 7 and start on the 22nd. This will keep me on the right schedule for my weeks with my son, and just push out my end date by 2 weeks IF all else goes well all the way through. If I have trouble with blood counts or anything that delays me along the way, then all is refigured again...

I have no idea if I'll react like I did this time to another port insertion, if the trouble this time wasn't infection. It scares me. I'm pissed off at this set-back, frustrated at once again being the medical oddball. And frustrated that I have no idea when I'll heal, when I'll get another port, when I'll start chemo or anything. No answers. And meanwhile who knows if there are any cancer cells dividing and spreading or not?

Yesterday was the first day I've gotten really upset about all of this. I was mad at the world. Today after a good night of sleep I am much better, but I have to say I'm still not happy hanging in limbo again.

Fb489
Posts: 69
Joined: Sep 2009

sorry you are going through this.
your case in the perfect example why my husband refuses to have a port.
get a second opinion on the port.
my daughter works in the chemo department and there are many people who
get chemo without having a port.

DennisR
Posts: 148
Joined: Sep 2009

I would ask the Oncologist to put in a PICC line instead of a port, all you have to do is flush the lines out with saline once a day and cover it when showering, etc.
Not a real big deal and I found the PICC to be a whole lot less sore and painful between Chemo sessions. It also worked flawlessly while the Port was always clogging up. I used a self sticking Ace bandage to keep the PICC lines in place and wasn't bothered by it in the least.
DennisR

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Kathryn,
Set backs happen. The cancer beast adheres to nobodys schedule. I have a PICC line and it works great. It even helped during my current hospital stay with blood draws and fewer needle sticks overall.

Don

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

....After all that, I'd be wanting to go to another hospital with all new doctors, who might know what they're doing! they just can't seem to work together, so much back and forthing over a port, they can't get that right, I'd be afraid of them doing chemo on me..

So Sorry you're having all those problems, I love the port, I couldn't imagine doing chemo without it, I hope you're able to get this resolved soon.

Hugsss!
~Donna

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