I'm soooo friggin' PO'd!
Comments
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Cindy wrote "I have a friend.....daisy366 said:Cindy
I agree with Connie - not to blame yourself. Those pamphlets and disclosures probably help in litigation. But your health team really has responsibility to inform you and help you in this path.
Re: my port. Just a regular "Bard Port". I started with flush every 4 weeks, then asked to stretch to 6. Since no problems, and oohs and ahhs from everyone, I was able to negotiate the 8 week interval. With changes of insurance I incurred costs up to $200 for a single port flush (bad story) so frequency was a big issue for me. It's all worked out now. But again, it's important for us to read the fine print - when I switched to my husband's insurance when leaving my job due to cancer, I read policies and they looked alike. Well, surprise when the fine print considered my port flush facility to be a hospital where my co-pay for outpatient procedures is $300. A port flush was billed at nearly $200 therefore, no coverage for me. It took me months of aggravation, advocacy, poor advice, and begging/pleading for me to get to my current situation. American health care - what are the answers for us??
Cindy, in the end you will get through this as I eventually did. I learned that even if a door shuts to go back to that door again and knock loudly and earnestly on it. When I asked for help again from a facility that rejected me before (to get my port flushed), my phone call reached the office manager who, in turn, asked the staff if they would help me (a patient with another oncology practice who could not flush my port) - and lo, a wonderful doctor offered to take me on as his patient for the sole purpose of doing me an act of charity - flushing my port. What grace. A lesson for me - to give my gifts to others when they are in need.
Cindy, have you given feedback to your health team about this? They really need to know that this omission has caused you pain in many ways. This will help another.
God bless. Mary Ann
Cindy wrote
"I have a friend who just found out she has lung cancer her radiologist did her surgery to remove her tumor and put in her port which I thought was odd."
Maybe it was one of those radiologists with a sub-specialty. I think we all think that radiologists just do scans and X-rays and ultrasounds. But the ones who are specially trained to do many other things.....
JoAnn0 -
Janjanh_in_ontario said:Dumb question...
If you had chemo 3 years ago - why would you still have a port? Don't you just have chemo and then the port gets removed? Is it understood you will be using it again?
Jan
They don't just pull out the port when treatments are over. Seems like the standard with most docs, leave it in for anywhere from 2-6 years, as if have recurrence surely don't want to go thru having another one implanted again. I've got a friend who finally had hers removed after 7 years. As long as it's comfortable and being flushed it should be fine.
After a few of you posted about how often have the port flushed I called my docs office. Asked about my follow-up appts being every 6 months, what's recommendation for port flushing as now I'm doing it at the 6-month appt ONLY. Suggest to all patients who are not in treatments, every 2-3 months. I'll go in every 3 months...... In the scheme of things, this was never at forefront of my mind, and apparently not my docs. Not a big deal!
Ciao!
Jan0 -
agreeJoAnnDK said:Cindy wrote "I have a friend.....
Cindy wrote
"I have a friend who just found out she has lung cancer her radiologist did her surgery to remove her tumor and put in her port which I thought was odd."
Maybe it was one of those radiologists with a sub-specialty. I think we all think that radiologists just do scans and X-rays and ultrasounds. But the ones who are specially trained to do many other things.....
JoAnn
Cindy, I agree with Mary Ann — you really need to let your team know about this lapse in information. Every person who could have/should have informed you should be told that they dropped the ball.
Of course, let them know this is the nicest possible terms, but through clenched teeth! LOL
Hannah0 -
Well ladies....
Good news!
I went in today to have what is called a dye study which is exactly what it sounds like. The radiologist inserts dye into the port to see where the blockage is and I assume allows them to determine whether they can fix it or not.
When the technician (or nurse) accessed the port she immediately was able to draw blood. So miraculously, it was no longer clogged. They aren't sure why...maybe the stuff that they used to try and dissolve the blockage eventually worked or maybe it was because I was laying down flat on my back. Who knows. They still did the dye test and everything looks fine.
I spent the rest of my day so darn happy, I could hardly wipe the grin off my face. How sad is that. LOL
Tomorrow, I start chemo and I get to use my port. Whoopie!
Cindy0 -
Cindy so glad your port worked, todayCindyGSD said:Well ladies....
Good news!
I went in today to have what is called a dye study which is exactly what it sounds like. The radiologist inserts dye into the port to see where the blockage is and I assume allows them to determine whether they can fix it or not.
When the technician (or nurse) accessed the port she immediately was able to draw blood. So miraculously, it was no longer clogged. They aren't sure why...maybe the stuff that they used to try and dissolve the blockage eventually worked or maybe it was because I was laying down flat on my back. Who knows. They still did the dye test and everything looks fine.
I spent the rest of my day so darn happy, I could hardly wipe the grin off my face. How sad is that. LOL
Tomorrow, I start chemo and I get to use my port. Whoopie!
Cindy
Good luck with your chemo tomorrow. I can relate to you being so happy to see blood from your port. I am so relieved everytime I see them get blood when they withdraw from the port. In peace and caring.0 -
Cindy, I am so happy for youCindyGSD said:Well ladies....
Good news!
I went in today to have what is called a dye study which is exactly what it sounds like. The radiologist inserts dye into the port to see where the blockage is and I assume allows them to determine whether they can fix it or not.
When the technician (or nurse) accessed the port she immediately was able to draw blood. So miraculously, it was no longer clogged. They aren't sure why...maybe the stuff that they used to try and dissolve the blockage eventually worked or maybe it was because I was laying down flat on my back. Who knows. They still did the dye test and everything looks fine.
I spent the rest of my day so darn happy, I could hardly wipe the grin off my face. How sad is that. LOL
Tomorrow, I start chemo and I get to use my port. Whoopie!
Cindy
Cindy, I am so happy for you that your port is working now! What a relief for you!0 -
Yeah, Cindy!!!Kaleena said:Cindy, I am so happy for you
Cindy, I am so happy for you that your port is working now! What a relief for you!
So glad this resolved!! And I chuckled at your comment about being happy you can use your port for chemo. It is incredible what we can be grateful for!!!
All the best to you as you soldier on!! Mary Ann0 -
Glad your port worked today!CindyGSD said:Well ladies....
Good news!
I went in today to have what is called a dye study which is exactly what it sounds like. The radiologist inserts dye into the port to see where the blockage is and I assume allows them to determine whether they can fix it or not.
When the technician (or nurse) accessed the port she immediately was able to draw blood. So miraculously, it was no longer clogged. They aren't sure why...maybe the stuff that they used to try and dissolve the blockage eventually worked or maybe it was because I was laying down flat on my back. Who knows. They still did the dye test and everything looks fine.
I spent the rest of my day so darn happy, I could hardly wipe the grin off my face. How sad is that. LOL
Tomorrow, I start chemo and I get to use my port. Whoopie!
Cindy
Cindy,
It is pain having one but I do not think I would have made it through all the blood draws, chemo treatments, and dye for scans if I did not have one in. I was going every 4-6 weeks for a flush but when I told my onc dr. she was highly upset and who told me that. She told me every 4 weeks I want you to get it flushed. So every 4 weeks I get it flushed. I kinda wish all the Onc Drs would get the same advise and treatment protocol. So many ladies on here have different chemo treatments, radiation, therapy treatments from all Onc Drs and Cancer Centers. It does not seem like any just do one thing alike. It makes it very confusing when a person is searching for answers.
Anyway I have a friend I work with that she went through OV Cancer and they had to lay her down every time to access her port. The one time I had to lay down at a CT scan, the nurse stuck me 4 times before she could access the port. The next time I needed a scan I went to the cancer center first then walked back to the Imaging Room at the hospital already accessed. Then the imaging tech said they had no one to remove and flush so I had to walk back to the cancer center to get them to remove the access and flush it. That nurse reported it up the chain of command and I got a call from the Imaging Department to ask me about it. That was when I learned that you are not getting anyone in trouble when things are reported but you are helping them fix any problems for someone else down the line.
Glad your port is working now and they may have to have you lay down again to access it. Good luck tomorrow, will be praying for you. trish0 -
Cindy hope your chemo went wellCindyGSD said:Well ladies....
Good news!
I went in today to have what is called a dye study which is exactly what it sounds like. The radiologist inserts dye into the port to see where the blockage is and I assume allows them to determine whether they can fix it or not.
When the technician (or nurse) accessed the port she immediately was able to draw blood. So miraculously, it was no longer clogged. They aren't sure why...maybe the stuff that they used to try and dissolve the blockage eventually worked or maybe it was because I was laying down flat on my back. Who knows. They still did the dye test and everything looks fine.
I spent the rest of my day so darn happy, I could hardly wipe the grin off my face. How sad is that. LOL
Tomorrow, I start chemo and I get to use my port. Whoopie!
Cindy
Hope everything went well today,and you are doing okay tonight. Hang in there and take it one day at a time. In peace and caring.0 -
Trish...txtrisha55 said:Glad your port worked today!
Cindy,
It is pain having one but I do not think I would have made it through all the blood draws, chemo treatments, and dye for scans if I did not have one in. I was going every 4-6 weeks for a flush but when I told my onc dr. she was highly upset and who told me that. She told me every 4 weeks I want you to get it flushed. So every 4 weeks I get it flushed. I kinda wish all the Onc Drs would get the same advise and treatment protocol. So many ladies on here have different chemo treatments, radiation, therapy treatments from all Onc Drs and Cancer Centers. It does not seem like any just do one thing alike. It makes it very confusing when a person is searching for answers.
Anyway I have a friend I work with that she went through OV Cancer and they had to lay her down every time to access her port. The one time I had to lay down at a CT scan, the nurse stuck me 4 times before she could access the port. The next time I needed a scan I went to the cancer center first then walked back to the Imaging Room at the hospital already accessed. Then the imaging tech said they had no one to remove and flush so I had to walk back to the cancer center to get them to remove the access and flush it. That nurse reported it up the chain of command and I got a call from the Imaging Department to ask me about it. That was when I learned that you are not getting anyone in trouble when things are reported but you are helping them fix any problems for someone else down the line.
Glad your port is working now and they may have to have you lay down again to access it. Good luck tomorrow, will be praying for you. trish
Sounds like all hospitals are the same in one way. It takes "experts" to handle a port. I mean seriously, I think I could probably access and flush a port, how hard can it be. I had the same issue when I had radiation. They apparently didn't have anyone in the hospital that could handle a port so I had to go over to oncology for my blood draws. How bizarre.
Thanks for the prays...chemo went fine.
Take care,
Cindy0 -
CindyCindyGSD said:Trish...
Sounds like all hospitals are the same in one way. It takes "experts" to handle a port. I mean seriously, I think I could probably access and flush a port, how hard can it be. I had the same issue when I had radiation. They apparently didn't have anyone in the hospital that could handle a port so I had to go over to oncology for my blood draws. How bizarre.
Thanks for the prays...chemo went fine.
Take care,
Cindy
What I've found in hospitals, the one who must access your port must have been "officially trained", otherwise can't access. Had this happen to me a few times and I just told them, heck use my veins. Not like I'm getting filled with tons of toxins from chemo, just needing some blood drawn. Think it's all part of the protocol with training!!!
Happy to hear you're back up and running....
Jan0 -
no port, and I'm glad!
Although I have always been needle-phobic, I didn't want a port installed. And my oncologist said that I didn't have to get one. We hoped for just one round/4 pre-surgery infusions of adriamycin and cytoxan. But I did have to have a round of taxotere after my mastectomy because they found cancer in two sentinel nodes.
After reading all your comments here, AND after having endured this tissue expander in place of my removed breast for 12 months, I am REALLY REALLY glad that I didn't get a port.
I hated the infusions and all the blood draws, but I know I would have hated the port more. The port is with you 24/7 (like my expander), whereas the needles were only in my arm for a few seconds to a few hours every two weeks, and there's no maintenance. The risks associated with venipucture seemed quite low to me, lower than the risks associated with the port. The infusion nurses pushed me hard to get a port. One male nurse even stood over me and yelled at me in the infusion room while shaking his finger in my face. But no one ever told me about the maintenance, or about the port possibly being left in for years--this is the first I've heard of it, having signed on to this web site yesterday after 18 months of cancer treatment.
It's true, I'm a very active person, so this may be why things implanted into me bother me so much. It hurts a little to get hit in the chest with a frisbee. I don't even want to think about what it would be like to get hit in the PORT with a frisbee. When I pointed this out to above-mentioned sociopathic nurse, he admitted that this would be problematic and told me that I could just NOT PLAY FRISBEE. Hunh? No, sorry.
I use machines at the gym that involve pressing my chest against a pad while pulling weights toward me. Not port-compatible. I can think of all sorts of other activities, including sex, that would be severely restricted by the port or that would damage the port and send me to the emergency room.
I guess if one is normally very sedentary, does not lift anything heavy or ever lie face down, and also is not very sensitive to tactile sensations, the port could be a reasonable choice. In my case, I really regret having the expander placed during mastectomy. I'm constantly aware of it, even when I am not moving. I should have waited to see if there was cancer in my lymph nodes, but I was "so sure" that the chemo and surgery would be all I'd need. So I lost that bet, and the expander has been nothing but grief and restriction.
Just thought I'd add another weird perspective.
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YES PORT!!carobearo said:no port, and I'm glad!
Although I have always been needle-phobic, I didn't want a port installed. And my oncologist said that I didn't have to get one. We hoped for just one round/4 pre-surgery infusions of adriamycin and cytoxan. But I did have to have a round of taxotere after my mastectomy because they found cancer in two sentinel nodes.
After reading all your comments here, AND after having endured this tissue expander in place of my removed breast for 12 months, I am REALLY REALLY glad that I didn't get a port.
I hated the infusions and all the blood draws, but I know I would have hated the port more. The port is with you 24/7 (like my expander), whereas the needles were only in my arm for a few seconds to a few hours every two weeks, and there's no maintenance. The risks associated with venipucture seemed quite low to me, lower than the risks associated with the port. The infusion nurses pushed me hard to get a port. One male nurse even stood over me and yelled at me in the infusion room while shaking his finger in my face. But no one ever told me about the maintenance, or about the port possibly being left in for years--this is the first I've heard of it, having signed on to this web site yesterday after 18 months of cancer treatment.
It's true, I'm a very active person, so this may be why things implanted into me bother me so much. It hurts a little to get hit in the chest with a frisbee. I don't even want to think about what it would be like to get hit in the PORT with a frisbee. When I pointed this out to above-mentioned sociopathic nurse, he admitted that this would be problematic and told me that I could just NOT PLAY FRISBEE. Hunh? No, sorry.
I use machines at the gym that involve pressing my chest against a pad while pulling weights toward me. Not port-compatible. I can think of all sorts of other activities, including sex, that would be severely restricted by the port or that would damage the port and send me to the emergency room.
I guess if one is normally very sedentary, does not lift anything heavy or ever lie face down, and also is not very sensitive to tactile sensations, the port could be a reasonable choice. In my case, I really regret having the expander placed during mastectomy. I'm constantly aware of it, even when I am not moving. I should have waited to see if there was cancer in my lymph nodes, but I was "so sure" that the chemo and surgery would be all I'd need. So I lost that bet, and the expander has been nothing but grief and restriction.
Just thought I'd add another weird perspective.
I hear your thoughts on the pros for no port. I'm an active person as well, but found to never really bother me, outside of first month when the area was somewhat sensitve. If one is a bit thinner, as in my case, it as well can "stick out" more and cause issues. Must tell you, I had NO issues at all, and today 4 years after it was inserted, we're good buddies. In fact, don't really feel it unless I hit my chest in the spot where device is located.
What I have found disturbing via friends who are RN's and draw blood from many patients, When chemo drugs are administerd intravenously, the veins can end up scarred and weakened. Many people avoid this complication by having a port prior to chemo infusion process. Bottom line, if infusions aren't via port, the veins become very brittle and weakend, causing blood drawing almost impossible many years later. I look at chemo drugs like pouring gas down plastic pipes....gas simply errodes the plastic.
As well, you have had expanders due to the breast cancer and can see the port possibly causing issues.
Two sides to every story.....and we all do what we feel is best~
Hugs,
Jan
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