I'm soooo friggin' PO'd!

CindyGSD
CindyGSD Member Posts: 190
Just another example of why you need to be your own advocate.

Standard treatment protocol for MMMT is usually 3 rounds of chemo, radiation, then 3 more rounds of chemo. I finished the first half of the chemo and all the radiation and was "recovering" for the last few weeks. I met with my oncologist for the first time since early October and happened to mention that I haven't had anything done with my port in almost two months.

She told me that I should be having it flushed every four weeks and she apologized if no one told me. Sure enough, when I went to have labs done they could not get anything from my port. Its clogged and after two hours of having stuff flushed through it...still...nothing. So now I have a port that doesn't work and I have 3 more rounds of chemo which actually involves 9 more chemo treatments (I get chemo, 3 days in a row).

I cannot believe that no one....not the radiologist that put it in, nor the chemo nurses that use it and draw blood from it for labs, nor my oncologist or her nurse, or the oncologist/radiologist or any of his staff, ever mentioned one thing about having my port flushed monthly. Yet every time I go in they ask me if I'm taking my "multi vitamin". Apparently there are dire consequences if I don't take that horse pill every day.

Next week they are going to try one more thing to unclog it (I think something with the radiologist who put it in), otherwise it looks like I"m going to have to role up my sleeves and have them stick me again. No way am I getting another port.

Just posting this so others don't make the same mistake I did.

Thanks for letting me vent.

Cindy
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Comments

  • nempark
    nempark Member Posts: 681
    Cindy you are so right
    Iwas also dx with MMMT, 2 year since. Anyway, my 45 year old daughter has been dx in November and is having treatment. It's a joke, whenever we go for treatment it is always a confusion what treatment she is really going to have. I have a note book and I write everything done. Sometime the nurses even ask me what meds she had yesterday. Just a joke. Cindy I am sure they will manage to get it working again. Be well my dear and don't get too stressed out, but you should let the administration know about it. By the way I had only chemo and they did not give me a port. June
  • Kaleena
    Kaleena Member Posts: 2,077 Member
    Cindy:I am so sorry to hear
    Cindy:

    I am so sorry to hear about this. It just makes you mad when they expect you to know stuff. I had my port in for 6 years and just had it taken out. I was told that you needed to have it flushed (when finished with chemo) every 4 to 6 weeks. I found out that if I waited to near the sixth week sometimes it was hard to flush.

    Also, it could be the nurse that was trying to flush. Some nurses "miss" the spot. Yes they can miss. Sometimes you need to move in different positions. Sit straight up - stick your chest out. Sometimes they make you lay down. Whatever works.

    Ask for a more experienced nurse with ports to try to flush and draw blood.

    ***One nurse that I had I called her the "fisherman" 'cause she would use the needle as a fishing hook and try to hook me. It felt that way too! She was the only one that hurt me. Other ones can be so gentle and quick.

    Here's a good one too. The reason I had my port finally taken out was my local hospitals refused to flush it anymore because my doctor was not in their network. Although they would take it out. So for 5 months it just sat there and was literally useless then.

    You keep being your own advocate, Cindy. I hope it all works out for you.

    Kathy

    P.S. At one of my port flushes (you know it only takes 10 minutes, they had me waiting 1 1/2 hours and then I got the "fishernurse". I was so upset I ended up getting pulled over on the way home because the officer said I went through a red light - I said it was yellow.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    Kaleena said:

    Cindy:I am so sorry to hear
    Cindy:

    I am so sorry to hear about this. It just makes you mad when they expect you to know stuff. I had my port in for 6 years and just had it taken out. I was told that you needed to have it flushed (when finished with chemo) every 4 to 6 weeks. I found out that if I waited to near the sixth week sometimes it was hard to flush.

    Also, it could be the nurse that was trying to flush. Some nurses "miss" the spot. Yes they can miss. Sometimes you need to move in different positions. Sit straight up - stick your chest out. Sometimes they make you lay down. Whatever works.

    Ask for a more experienced nurse with ports to try to flush and draw blood.

    ***One nurse that I had I called her the "fisherman" 'cause she would use the needle as a fishing hook and try to hook me. It felt that way too! She was the only one that hurt me. Other ones can be so gentle and quick.

    Here's a good one too. The reason I had my port finally taken out was my local hospitals refused to flush it anymore because my doctor was not in their network. Although they would take it out. So for 5 months it just sat there and was literally useless then.

    You keep being your own advocate, Cindy. I hope it all works out for you.

    Kathy

    P.S. At one of my port flushes (you know it only takes 10 minutes, they had me waiting 1 1/2 hours and then I got the "fishernurse". I was so upset I ended up getting pulled over on the way home because the officer said I went through a red light - I said it was yellow.

    Falling in the cracks
    Cindy, what a shame!! I think you have every right to be PO'd/ I agree that no one would know about port maintenance - sure isn't something we deal with very much. It's probably written in fine print somewhere. And you're right, we need to ask questions all the time and be EXPERTS in our treatment because in the end, we are the end left with the clogged port!!! Shame.

    I'm curious about a radiologist putting it in- radiologist? My gyn/onc referred me to a vascular surgeon!! (I've had mine for 3+ years, get it flushed every 8 weeks now and everyone loves it!!)

    Mary Ann
  • JoAnnDK
    JoAnnDK Member Posts: 275
    daisy366 said:

    Falling in the cracks
    Cindy, what a shame!! I think you have every right to be PO'd/ I agree that no one would know about port maintenance - sure isn't something we deal with very much. It's probably written in fine print somewhere. And you're right, we need to ask questions all the time and be EXPERTS in our treatment because in the end, we are the end left with the clogged port!!! Shame.

    I'm curious about a radiologist putting it in- radiologist? My gyn/onc referred me to a vascular surgeon!! (I've had mine for 3+ years, get it flushed every 8 weeks now and everyone loves it!!)

    Mary Ann

    inexcusable
    Oh, Cindy, what a shame you are having to go through this and you are right to be pissed off. This is inexcusable.

    My port was put in by an "interventional radiologist", a minimally invasive specialist....someone who has done a fellowship in vascular and interventional radiology after his/her radiology residency.

    From a list of procedures they do, here is the one with ports

    " * Line insertion:

    Vascular access and management of specialized kinds of intravenous devices (IVs) (e.g. PIC lines, Hickman lines, subcutaneous ports including translumbar and transhepatic venous lines)"

    My regular radiologist told me that this type of specialist is not available in every hospital.
  • Kaleena
    Kaleena Member Posts: 2,077 Member
    daisy366 said:

    Falling in the cracks
    Cindy, what a shame!! I think you have every right to be PO'd/ I agree that no one would know about port maintenance - sure isn't something we deal with very much. It's probably written in fine print somewhere. And you're right, we need to ask questions all the time and be EXPERTS in our treatment because in the end, we are the end left with the clogged port!!! Shame.

    I'm curious about a radiologist putting it in- radiologist? My gyn/onc referred me to a vascular surgeon!! (I've had mine for 3+ years, get it flushed every 8 weeks now and everyone loves it!!)

    Mary Ann

    Mary Ann:
    This is the new

    Mary Ann:

    This is the new thing. When I was trying to get my port out, they wanted me to go to a radiologist and have some intern or I think it was P.A. take it out. I said, "right". Of course I didn't do that. You were like me, I thought it has to be a vascular surgeon. When something involves stuff around my heart and insides, I want a surgeon.

    It seems that the radiology department is involved with all port insertions and they are actually doing most of them now. When I had mine put in, they put me under. But as I understand now, they don't. I finally did find a doctor who removed mine. Yes, he was with the radiology department, but he was a surgeon. I was awake for the whole procedure too.


    Kathy
  • jazzy1
    jazzy1 Member Posts: 1,379
    Kaleena said:

    Mary Ann:
    This is the new

    Mary Ann:

    This is the new thing. When I was trying to get my port out, they wanted me to go to a radiologist and have some intern or I think it was P.A. take it out. I said, "right". Of course I didn't do that. You were like me, I thought it has to be a vascular surgeon. When something involves stuff around my heart and insides, I want a surgeon.

    It seems that the radiology department is involved with all port insertions and they are actually doing most of them now. When I had mine put in, they put me under. But as I understand now, they don't. I finally did find a doctor who removed mine. Yes, he was with the radiology department, but he was a surgeon. I was awake for the whole procedure too.


    Kathy

    Port
    What a shame you have to now really start asking everyone. What happened to the days of us going to a doctor "assuming" they are the authority on our health and having them tell us what direction to go??????? I'd be PO'd too. Sorry to read this maze you've endured.

    I had my POWER PORT put in by my OB/oncologist 3 years ago. I was told prior to each chemo session should have the port flushed while they as well take blood work for my readings. I completed treatments July '09 and only have it "flushed" at each follow-up appt which started at every 3 months and today every 6 months. The last 2 times the RN's aren't able to pull blood via the port or if have success it starts the flow of blood and stops. NOTE, each time yes they do FLUSH THE PORT...which is what we ultimately want. I asked the RN this past week about it being "clogged" and her response -- usually some small pieces of skin cover the opening and when I really try to force blood thru port, it closes and stops. If you wanted I could have you sit here for approx one hour as I force a certain chemical/drug into the port which will open it up to full flow once more. Since I'm not having chemo infusions, not necessary.

    My doc told me having port flushed every 6-months is just fine and not worried about the blocking. No talk about mine being removed, but other women who've had their removed either went to hospital facility as "out-patient" or doc has done it in their office with a mild sedation.

    I'd ask about other options to open up the port.... Lastly, when I had blood drawn for my PCP yearly appt, the RN at this hospital educated me on why a port is so necessary for chemo. Educated me on the people whom she sees having gone thru chemo 15 or so years ago without a port. Today their veins are just shot, and almost impossible to draw blood for general numbers...I don't wanna be one of them many years ago. Chemo is so tough on our veins...simply destroys them. Not wanting to alarm you, but keep this in the back of your mind.

    Hang in there!
    Jan
  • Ro10
    Ro10 Member Posts: 1,561
    jazzy1 said:

    Port
    What a shame you have to now really start asking everyone. What happened to the days of us going to a doctor "assuming" they are the authority on our health and having them tell us what direction to go??????? I'd be PO'd too. Sorry to read this maze you've endured.

    I had my POWER PORT put in by my OB/oncologist 3 years ago. I was told prior to each chemo session should have the port flushed while they as well take blood work for my readings. I completed treatments July '09 and only have it "flushed" at each follow-up appt which started at every 3 months and today every 6 months. The last 2 times the RN's aren't able to pull blood via the port or if have success it starts the flow of blood and stops. NOTE, each time yes they do FLUSH THE PORT...which is what we ultimately want. I asked the RN this past week about it being "clogged" and her response -- usually some small pieces of skin cover the opening and when I really try to force blood thru port, it closes and stops. If you wanted I could have you sit here for approx one hour as I force a certain chemical/drug into the port which will open it up to full flow once more. Since I'm not having chemo infusions, not necessary.

    My doc told me having port flushed every 6-months is just fine and not worried about the blocking. No talk about mine being removed, but other women who've had their removed either went to hospital facility as "out-patient" or doc has done it in their office with a mild sedation.

    I'd ask about other options to open up the port.... Lastly, when I had blood drawn for my PCP yearly appt, the RN at this hospital educated me on why a port is so necessary for chemo. Educated me on the people whom she sees having gone thru chemo 15 or so years ago without a port. Today their veins are just shot, and almost impossible to draw blood for general numbers...I don't wanna be one of them many years ago. Chemo is so tough on our veins...simply destroys them. Not wanting to alarm you, but keep this in the back of your mind.

    Hang in there!
    Jan

    Jan is so right about chemo destroying veins
    Before I had chemo I had excellent veins. I asked about a port before I started chemo and my gyn/Ono told me if I had good veins I did not need a port. I was on the sandwich treatment, so I thought my veins would recover while I had my radiation. WRONG !! For my fourth chemo I had to be stuck feve times---3 for lab and2for chemo. After that chem I had febrile neutropenia and ended up in the hospital for a week. I had an abscess in my abdomen and had multiple sticks for antibiotics and lab sticks. I decided then to get a port. I do not regret that decision.

    When I had my port inserted I go an ID card to tell what kind of port I have ( a power port). On the back it tells what the flushing protocol should be. I have to show the card before I get a CAT scan as not all ports can be used for CAT scans.

    I have gone 6 to 7 weeks between flushes. I have had times when my port would not draw blood, but this is when I was getting chemo every three weeks. I had to have the medicine to open the port twice. I had stopped taking my baby aspirin when I was on chemo. Since I started back on the baby aspirin I have not had any more problems with the port.

    I too would have the port reinserted if I had a cancer that could recur. It is much nicer to have them stick the port for lab, chemo, and CAT scans rather than poking and prodding for a vein. Hope they can get this port "unclogged" for you. Good luck with your decision. In peace and caring.
  • RoseyR
    RoseyR Member Posts: 471
    Ro10 said:

    Jan is so right about chemo destroying veins
    Before I had chemo I had excellent veins. I asked about a port before I started chemo and my gyn/Ono told me if I had good veins I did not need a port. I was on the sandwich treatment, so I thought my veins would recover while I had my radiation. WRONG !! For my fourth chemo I had to be stuck feve times---3 for lab and2for chemo. After that chem I had febrile neutropenia and ended up in the hospital for a week. I had an abscess in my abdomen and had multiple sticks for antibiotics and lab sticks. I decided then to get a port. I do not regret that decision.

    When I had my port inserted I go an ID card to tell what kind of port I have ( a power port). On the back it tells what the flushing protocol should be. I have to show the card before I get a CAT scan as not all ports can be used for CAT scans.

    I have gone 6 to 7 weeks between flushes. I have had times when my port would not draw blood, but this is when I was getting chemo every three weeks. I had to have the medicine to open the port twice. I had stopped taking my baby aspirin when I was on chemo. Since I started back on the baby aspirin I have not had any more problems with the port.

    I too would have the port reinserted if I had a cancer that could recur. It is much nicer to have them stick the port for lab, chemo, and CAT scans rather than poking and prodding for a vein. Hope they can get this port "unclogged" for you. Good luck with your decision. In peace and caring.

    Good grief--nobody told me any of this!

    Had sandwich treatment with five weeks of radiation inbetween and seemed to have no trouble iwth any of my "sticks" whether for lab tests or chemo.

    But now I am worried by what I read here.

    And if I have a recurrence, I should surely ask for a port? How large are they? How visible are they? How long do you have to keep them in? Years?

    Thanks,
    Rosey
  • janh_in_ontario
    janh_in_ontario Member Posts: 150 Member
    jazzy1 said:

    Port
    What a shame you have to now really start asking everyone. What happened to the days of us going to a doctor "assuming" they are the authority on our health and having them tell us what direction to go??????? I'd be PO'd too. Sorry to read this maze you've endured.

    I had my POWER PORT put in by my OB/oncologist 3 years ago. I was told prior to each chemo session should have the port flushed while they as well take blood work for my readings. I completed treatments July '09 and only have it "flushed" at each follow-up appt which started at every 3 months and today every 6 months. The last 2 times the RN's aren't able to pull blood via the port or if have success it starts the flow of blood and stops. NOTE, each time yes they do FLUSH THE PORT...which is what we ultimately want. I asked the RN this past week about it being "clogged" and her response -- usually some small pieces of skin cover the opening and when I really try to force blood thru port, it closes and stops. If you wanted I could have you sit here for approx one hour as I force a certain chemical/drug into the port which will open it up to full flow once more. Since I'm not having chemo infusions, not necessary.

    My doc told me having port flushed every 6-months is just fine and not worried about the blocking. No talk about mine being removed, but other women who've had their removed either went to hospital facility as "out-patient" or doc has done it in their office with a mild sedation.

    I'd ask about other options to open up the port.... Lastly, when I had blood drawn for my PCP yearly appt, the RN at this hospital educated me on why a port is so necessary for chemo. Educated me on the people whom she sees having gone thru chemo 15 or so years ago without a port. Today their veins are just shot, and almost impossible to draw blood for general numbers...I don't wanna be one of them many years ago. Chemo is so tough on our veins...simply destroys them. Not wanting to alarm you, but keep this in the back of your mind.

    Hang in there!
    Jan

    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
  • Kaleena
    Kaleena Member Posts: 2,077 Member

    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

    Jan:
    I had my port in for

    Jan:

    I had my port in for six years. When I was done with chemo, my doc said wait until the next scan, then it was the next and thereafter. Then that doc retired. The newer doc said he felt superstitious since I had been NED and wasn't ready to take it out. Another doc said it is easier to take out than put in so leave it in a bit. Next thing I new years past. Then I couldn't find anyone to flush it so I eventually had to get it out. When I did, I did have some anxiety attacks though. Just got it out in July of 2011. (port was put in Nov of 2005).

    Kathy
  • Ro10
    Ro10 Member Posts: 1,561

    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

    I have had my port for 2 1/2 years
    The reason I had a port inserted because with the diagnosis of UPSC I was told it was not curable------ but treatable. So I figured I would need chemo again. Because my CA 125 has immediately raised after I stop chemo I have frequent lab tests and CAT scans, so my port has been used frequently. I even had a second round of 7 chemo treatments. The second round required 2 days of treatment each time. And I expect I will need a third round of chemo very soon. I know my peripheral ( arm) veins could not handle all this. Therefore I highly recommend a port for anyone having chemo.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    Ro10 said:

    I have had my port for 2 1/2 years
    The reason I had a port inserted because with the diagnosis of UPSC I was told it was not curable------ but treatable. So I figured I would need chemo again. Because my CA 125 has immediately raised after I stop chemo I have frequent lab tests and CAT scans, so my port has been used frequently. I even had a second round of 7 chemo treatments. The second round required 2 days of treatment each time. And I expect I will need a third round of chemo very soon. I know my peripheral ( arm) veins could not handle all this. Therefore I highly recommend a port for anyone having chemo.

    Port in 3+ years!
    I am getting irritated when I read that some of you haven't been told about damage to veins and never got a port as result. At the very least this should be a decision you make instead of some doctor that doesn't have chemicals flooding his/her veins. Darn it!!!

    I continue to admire the good care I get when this happens. My doc recommended a port first thing and said it would save my veins. When I found that port was inserted close to heart I inquired about heart damage but vascular surgeon said that it goes into heart so fast that it is immediately flushed out.

    The port has not inhibited me in any way - I have participated in very active exercise - like rowing machines and other machines. I have had no trouble with my port and I have kept it in due to type of cancer I am dealing with - highly recurrent. Like others have said, I'd rather maintain it (flushing bi-monthly) than more surgery to reinsert another. As I think back, I think it was the chemo nurse that told me about flushing and I would go to the lab regularly just for the port flush. Shame on them for not educating you.

    What is happening in our healthcare system? apathy? ignorance? Darn it - it's not right.

    MA
  • CindyGSD
    CindyGSD Member Posts: 190
    nempark said:

    Cindy you are so right
    Iwas also dx with MMMT, 2 year since. Anyway, my 45 year old daughter has been dx in November and is having treatment. It's a joke, whenever we go for treatment it is always a confusion what treatment she is really going to have. I have a note book and I write everything done. Sometime the nurses even ask me what meds she had yesterday. Just a joke. Cindy I am sure they will manage to get it working again. Be well my dear and don't get too stressed out, but you should let the administration know about it. By the way I had only chemo and they did not give me a port. June

    Thank you...June
    I did read about your daughter's diagnosis when you posted it a couple of months ago and I'm so sorry that you have to deal with that now on top of everything else. It feels like piling on, doesn't it? I'm having anger issues but what are you going to do? I think my nonchalant, go with the flow attitude came back to bite me on this one.

    Take care,
    Cindy
  • CindyGSD
    CindyGSD Member Posts: 190
    Kaleena said:

    Cindy:I am so sorry to hear
    Cindy:

    I am so sorry to hear about this. It just makes you mad when they expect you to know stuff. I had my port in for 6 years and just had it taken out. I was told that you needed to have it flushed (when finished with chemo) every 4 to 6 weeks. I found out that if I waited to near the sixth week sometimes it was hard to flush.

    Also, it could be the nurse that was trying to flush. Some nurses "miss" the spot. Yes they can miss. Sometimes you need to move in different positions. Sit straight up - stick your chest out. Sometimes they make you lay down. Whatever works.

    Ask for a more experienced nurse with ports to try to flush and draw blood.

    ***One nurse that I had I called her the "fisherman" 'cause she would use the needle as a fishing hook and try to hook me. It felt that way too! She was the only one that hurt me. Other ones can be so gentle and quick.

    Here's a good one too. The reason I had my port finally taken out was my local hospitals refused to flush it anymore because my doctor was not in their network. Although they would take it out. So for 5 months it just sat there and was literally useless then.

    You keep being your own advocate, Cindy. I hope it all works out for you.

    Kathy

    P.S. At one of my port flushes (you know it only takes 10 minutes, they had me waiting 1 1/2 hours and then I got the "fishernurse". I was so upset I ended up getting pulled over on the way home because the officer said I went through a red light - I said it was yellow.

    Hi Kathy,
    I did ask the nurse if she missed the spot but she didn't seem to think so. It has been seven weeks since my port was accessed so I'm sure its clogged. They had me doing all kinds of calisthenics, but nothing worked. They have one more procedure planned for next week to get it working, not sure what that involves but I'm sure I'll have an opinion about it.

    Cindy
  • CindyGSD
    CindyGSD Member Posts: 190
    daisy366 said:

    Falling in the cracks
    Cindy, what a shame!! I think you have every right to be PO'd/ I agree that no one would know about port maintenance - sure isn't something we deal with very much. It's probably written in fine print somewhere. And you're right, we need to ask questions all the time and be EXPERTS in our treatment because in the end, we are the end left with the clogged port!!! Shame.

    I'm curious about a radiologist putting it in- radiologist? My gyn/onc referred me to a vascular surgeon!! (I've had mine for 3+ years, get it flushed every 8 weeks now and everyone loves it!!)

    Mary Ann

    Hi Mary Ann
    I dug out my pamphlet on my port and in one of the Q&A sections they did say to have it flushed every four weeks. Guess I should read the literature, but who knew that something so important wouldn't be shared verbally as well. Ahh well. I guess I have only myself to blame.

    My port was put in by a radiologist, not sure what other "titles" they had but it wasn't the same one that did my radiation. 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. Anyway I don't think the problem was with the port because it worked wonderfully at first.

    I'm surprised you can go as long as 8 weeks. What kind of port do you have?

    Cindy
  • CindyGSD
    CindyGSD Member Posts: 190
    jazzy1 said:

    Port
    What a shame you have to now really start asking everyone. What happened to the days of us going to a doctor "assuming" they are the authority on our health and having them tell us what direction to go??????? I'd be PO'd too. Sorry to read this maze you've endured.

    I had my POWER PORT put in by my OB/oncologist 3 years ago. I was told prior to each chemo session should have the port flushed while they as well take blood work for my readings. I completed treatments July '09 and only have it "flushed" at each follow-up appt which started at every 3 months and today every 6 months. The last 2 times the RN's aren't able to pull blood via the port or if have success it starts the flow of blood and stops. NOTE, each time yes they do FLUSH THE PORT...which is what we ultimately want. I asked the RN this past week about it being "clogged" and her response -- usually some small pieces of skin cover the opening and when I really try to force blood thru port, it closes and stops. If you wanted I could have you sit here for approx one hour as I force a certain chemical/drug into the port which will open it up to full flow once more. Since I'm not having chemo infusions, not necessary.

    My doc told me having port flushed every 6-months is just fine and not worried about the blocking. No talk about mine being removed, but other women who've had their removed either went to hospital facility as "out-patient" or doc has done it in their office with a mild sedation.

    I'd ask about other options to open up the port.... Lastly, when I had blood drawn for my PCP yearly appt, the RN at this hospital educated me on why a port is so necessary for chemo. Educated me on the people whom she sees having gone thru chemo 15 or so years ago without a port. Today their veins are just shot, and almost impossible to draw blood for general numbers...I don't wanna be one of them many years ago. Chemo is so tough on our veins...simply destroys them. Not wanting to alarm you, but keep this in the back of your mind.

    Hang in there!
    Jan

    Hi Jan...
    I can think of a few different times that I should have been told to flush the port. The chemo nurses knew that I was going to take a "break" to get radiation so they should have told me and I met with my doctor's PA right before my last chemo treatment and she should have told me. I also talked (or argued) with my oncologist's nurse about how long I would be on this chemo break, thinking it was much too long, and she should have told me. But then I guess if I would have read the literature that came with my port, I wouldn't have had to have anyone tell me so I have only myself to blame.

    With regard to unclogging the port, they did put something in it and I sat for first a half hour, didn't work so then another twenty minutes...still nothing. They are trying one more thing next week so hopefully that will work.

    I'm curious, you say you only have to have it flushed every six months? That's amazing to me. I have a power port as well so then there shouldn't be any excuse for them not to get it working again if they can unclog it after six months.

    Take care,
    Cindy
  • CindyGSD
    CindyGSD Member Posts: 190
    JoAnnDK said:

    inexcusable
    Oh, Cindy, what a shame you are having to go through this and you are right to be pissed off. This is inexcusable.

    My port was put in by an "interventional radiologist", a minimally invasive specialist....someone who has done a fellowship in vascular and interventional radiology after his/her radiology residency.

    From a list of procedures they do, here is the one with ports

    " * Line insertion:

    Vascular access and management of specialized kinds of intravenous devices (IVs) (e.g. PIC lines, Hickman lines, subcutaneous ports including translumbar and transhepatic venous lines)"

    My regular radiologist told me that this type of specialist is not available in every hospital.

    JoAnn
    I guess you answered the question about why a radiologist can put in port. I'm really not concerned that it was inserted incorrectly as it seemed to work perfectly right from the start. I will be shocked if they can't ultimately get it unclogged.

    Cindy
  • CindyGSD
    CindyGSD Member Posts: 190
    Ro10 said:

    Jan is so right about chemo destroying veins
    Before I had chemo I had excellent veins. I asked about a port before I started chemo and my gyn/Ono told me if I had good veins I did not need a port. I was on the sandwich treatment, so I thought my veins would recover while I had my radiation. WRONG !! For my fourth chemo I had to be stuck feve times---3 for lab and2for chemo. After that chem I had febrile neutropenia and ended up in the hospital for a week. I had an abscess in my abdomen and had multiple sticks for antibiotics and lab sticks. I decided then to get a port. I do not regret that decision.

    When I had my port inserted I go an ID card to tell what kind of port I have ( a power port). On the back it tells what the flushing protocol should be. I have to show the card before I get a CAT scan as not all ports can be used for CAT scans.

    I have gone 6 to 7 weeks between flushes. I have had times when my port would not draw blood, but this is when I was getting chemo every three weeks. I had to have the medicine to open the port twice. I had stopped taking my baby aspirin when I was on chemo. Since I started back on the baby aspirin I have not had any more problems with the port.

    I too would have the port reinserted if I had a cancer that could recur. It is much nicer to have them stick the port for lab, chemo, and CAT scans rather than poking and prodding for a vein. Hope they can get this port "unclogged" for you. Good luck with your decision. In peace and caring.

    Thanks Ro
    Well unfortunately I have 3 more rounds of chemo starting Wednesday which in itself isn't so bad, but I have it 3 days in a row so that's nine more doses of chemo. I just can't imagine getting another port in the next month and a half when I just had this one put in, in September. I'll probably suffer with chemo in the veins ( and live to regret it) and if the cancer comes back, get another port at that point. On the plus side, I won't have to worry about jinxing myself by voluntarily taking a working port out just in time for summer, which I had considered.

    Take care,
    Cindy
  • paris11
    paris11 Member Posts: 159
    CindyGSD said:

    Hi Kathy,
    I did ask the nurse if she missed the spot but she didn't seem to think so. It has been seven weeks since my port was accessed so I'm sure its clogged. They had me doing all kinds of calisthenics, but nothing worked. They have one more procedure planned for next week to get it working, not sure what that involves but I'm sure I'll have an opinion about it.

    Cindy

    Cindy - you must not blame yourself
    Hi Cindy,

    Your Med - Team is responsible for your care!!! Very few, if any, persons with cancer can read and assimilate all the literature.

    II think we have all had bad experiences with treatment. I think that we all are noble and exceptional. I have my moments of FURY but

    I try to move forward.


    My stents were neglected for six months. The md's response, "Holy ****, we forgot to remove the stents."


    Needless to say, I no longer see him!!!

    Connie
  • daisy366
    daisy366 Member Posts: 1,458 Member
    paris11 said:

    Cindy - you must not blame yourself
    Hi Cindy,

    Your Med - Team is responsible for your care!!! Very few, if any, persons with cancer can read and assimilate all the literature.

    II think we have all had bad experiences with treatment. I think that we all are noble and exceptional. I have my moments of FURY but

    I try to move forward.


    My stents were neglected for six months. The md's response, "Holy ****, we forgot to remove the stents."


    Needless to say, I no longer see him!!!

    Connie

    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