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I'm so pissed

jenben59
Posts: 144
Joined: Jan 2009

I'm really pissed off and it takes a lot for me to get mad. I went to my chemo appointment yesterday and the nurse could not get the needle in my port again. This time not at all. She called another nurse in and she could not get it in...and she was really poking it hard... she finally poked it in an un-numbed area quite hard and I about came out of my chair. (She didn't do it on purpose, though.) She went to talk to the oncologist and she came back and told me to go next door to the hospital and have X-rays and a CT scan to find out what was wrong. I get to the hospital and they do the X-rays and then get me ready for the CT scan, but want to put this "solution" in me to look at the port and line. Well, the solution has iodine in it and I'm very allergic to it. SO, they call my ONC back and I have to go back and get prescriptions for 3 meds to take 24 hours BEFORE I have the CT scan with the "solution" with iodine in it. I go back at 11:30 this morning with the drugs in me for the CT scan. Some doctor comes in, was very nice...starts checking it out and the doctor that installed it never sewed it in place! It was floppy...the port turned over in my chest and twisted the line. So, now I have to stop chemo, have my chest opened again, fix the line and put another port in place. My ONC wants me to wait until it is healed to start back on chemo. She was very nice and comforting...but she's calling that doctor that put the port in and make him fix it. Right now the date to get the port fixed isn't even set up, I haven't heard back from the ONC. I had to get this out...sorry if it upsets anyone. Thank you again for listening to me and being supportive. I do appreciate everyone...who else could I vent to.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Jenben,
How very frustrating. So sorry you had to go through this. We really need our medical professionals to step up and do their jobs. Hope all goes well getting it back in place.
Aloha,
Kathleen

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MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Oh hun, I'm so sorry! I would be LIVID!! I had a setback with my chemo too. My body couldn't tolerate the Xeloda so we had to stop for 6 weeks while I healed inside and then start all over again.

Keep hanging in there and try not to strangle the doctor till he's fixed your port! :)

Hugs!

Jorie

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I had exactly the same thing happen last year. My port would flip in my chest and they couldn't access it. I had to have it removed and put in right, and that surgeon thought he was going in to fix it? No way!! It was aweful but you will get through it. New port and restart chemo....sorry for the bump. It is just so frustrating to know that this will stretch out your chemo because someone (your surgeon)didn't do their job! uuuuuggghhh...

Kimby

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

You have every right to be livid... that is insanity that this doctor would "forget" to sew it in place. I think that's what would make me the maddest... it may not be a big thing to him, but hey, it's YOUR body he's mucking around with and now it's causing you great discomfort and a break in your treatment.

I'm sure the break won't put you in any kind of jeopardy. If it did, your oncologist would come up with a solution even if it meant doing the chemo by IV until your port healed. But for her to say she'd like to wait until the port is fixed and healed, then she would already have thought of whether not doing the treatment was a problem or not... and obviously she doesn't think it is a problem. But if it starts bugging you, give her a call and ask her.

Huggggggs,

Cheryl

JTL52
Posts: 16
Joined: Jul 2007

Hi JenBen,
I had trouble with my port and needed it replaced during chemo. Instead of delaying treatment I did two treaments of Oxliplatin & 5FU by vien in my arm, one treatment I just skipped the pump infustion and the other I came in two days later for an infusion of 5FU in place of the pump.
Janet

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

And she wants the guy who screwed it up the first time to go back in and do it again? Are you just supposed to believe THIS time he'll do it right???? I would be looking for a different surgeon to place the new port! And I agree, speak with your onc about whether you should just get some treatments via IV, coming back in days 2 and 3 for 5FU infusion since you won't have the pump; see what she says. Good luck with that and be sure to spread the word to other survivors in your vicinity at treatments about that crappy surgeon!
mary

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

You have every single right to be pissed off Jen....sounds like mass confusion.

Don't know if it helps but I have done several months of 5FU 5days a week by iv infusion.
Yesterday I started oxalyplatin just in the vein 2 hour infusion. never had a port for any of it. Not suggesting you don't get that port fixed up but it is very possible to do your chemo by IV if you were really feeling you didn't want to fall behind.

Good luck sweetie and rant on....
Hugs
Mags

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I don't blame you for being pissed. I would be too. I've had mine for 5 years and it was the smartest thing I did, the chemo can be very caustic but it's a matter of personal preference. I'd be wary of having the same Doc fix it but that may be your only option.
Good luck with it.
-p

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Hi Jen,
You often hear comments fron the sufferers of serious diseases that the cure is worse than the disease. Well it's true. Wouldn't it be wonderful if all the specialists who deliver these cures had to have a little taste of what they deliver. I was very lucky my oncologist had a serious blood disorder that required him to have chemo. As a result he built an oncology clinic that would not have been out of place on a mediterranian beach. All of the chemo was done in comfortable recliners or beds. We were allowed to bring oue own cds and play them during chemo ,subject to the other patients. No one ever complained. I had 5fu every tuesday for a year. It was delivered via canula in the back of alternate hands each week. He always used a local to put the canula in.. Over the year I watched the veins in each arm turn dark brown all the way up to the shoulder. My family was horrified. I thought it was sort of cool ,at least i could see where the chemo was going. At times all of my chemo friends would get soundly miffed about some part of chemo... infections,,falling blood counts and all manner of nasty side effects. we were able to bounce off each other and eventually we all embraced the stoicism that lets you make it thru long periods of hardship.
So its all right to get pissed off with things,just bounce it off us in here then stand up dust yourself off and get back into the fight. Good luck with the port and my best wishes for a long and healthy life beyond ca...Ron.

jenben59
Posts: 144
Joined: Jan 2009

Thank you for the truth...I believe I worry about the chemo more than the cancer. I enjoy your posts not only for the support, but your "picture". I love the water...it calms me. I grew up in Bay Village, Ohio and my parents home was on a cliff...sometimes the water would hit and spray over the top. I've been in Texas a long time lived by the gulf coast in League City/Kemah. I moved to San Leon (in July) about 2 months before Ike hit. The boats,water and more laid back life style is calming, even more so as I get older. The water in your picture is so blue... so you must be somewhere wonderful. Thanks for your support.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Gracious! You have every right to be mad! That is just ridiculous. I really don't think I would have the same surgeon try to fix it, but maybe your doctor suggested it to save money, because surely this idiot surgeon wouldn't charge you a penny to fix his mistake.

Wow. I'm still floored by this.

*hugs*
Gail

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

Well, here I am! Queen of th eport problems - two years ago whe I started my chemo - my port could not be accessed , every onc nurse in the place had to come give it a go - None could do it. One lady - the big kahuna - said " oh I have been doing this 30 years" - she couldn;t get it in.... she even cried real tears, as she stabbed at my chest and I screamed. SO - I too went to the CT machine to have a radiologist "fix" it - he did and they could access it better. Here's the kicker...... I had to do my chemo in the hospital 48 hour drip - in patient - and get this my port only worked when I was FLAT N MY BACK - SO guess what I did for 48 hours - every other week times 12 rounds - NOTHING! When I would get up to pee or brish my teeth - that dang beeper would ring as the pump stopped working - it was like chinese torture. I envied the other mobile upright chemo patients as they wheeled their pumps around the hospital chatting it up! Wait I just did the math - that 576 hours on back just do get chemo! Whew! What a champ I am.... are you feeling better yet?????
Well, here's the funny part - so as I treat to myself, for my last 48 drip, I opted to use my arm, and NOT my port - so I could sit up and really enjoy the hospital experience for the last time, and guess what - half way into it my arm hurt so bad, I was begging for them to access that dam port!
Well, that port is out of my body now, and lives in my jewelry drawer, a little reminder of that crazy time.

Also - when they removed it , it was found that my surgeon thought to put a tiny kid-size port in as I was thin, which os partly why the stupid thing didn't work!

I am still in favor of ports - they have to better all around - I just thought you all might like to hear my port fiasco! If anything, to make yu fell better about yours!

Joy1216's picture
Joy1216
Posts: 293
Joined: Mar 2006

I would be majorly PO'd if that happened to me. I didn't have chemo, so I don't have any experience with a port. I want to address something that no one else has. Have you complained informally or filed a formal complaint about the surgeon not sewing the port in place? If you're still really upset in a couple of days, you might consider complaining so that hopefully this won't happen to anyone else.
Joy

hopefulone
Posts: 1048
Joined: Jan 2007

Go ahead and vent . Your entitled. My husband had similar situation. His port was twisted and broke off and part is still in artery which can't be removed. I believe it was because when it was installed, they "thought" it was kinked initially and there was a long delay afterwards waiting while they took digital xrays and came out and said all was ok, but I believe thats why it broke off 8 mos later, because it wasn't done right to begin with. Best to have it redone by someone else. Good luck. Keep the faith, Diane

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