I am curious about how many of you have ports and what your experience has been with this. I had breast cancer with lymph nodes removed so I can only get my infusions in one hand. My doctor has been talking with me about getting a port but I am very hesitant about doing this. A dear friend of mine had breast cancer and later passed away. She had a port and I just remember her having infections, etc. and having a lot of trouble with her port. I had an infusion this morning and the nurse had very positive things to say about ports. Maybe my only exposure to ports was not a good one. I would love to hear from my friends here to see what your knowledge and experiences have been with having ports installed. I was diagnosed with CIDP in Oct. 2011, so all of this is new to me. I would really appreciate your feedback.
Hi Tammy,
My sister had a port for her chemo when she was battling breast cancer and she has nothing but good things to say about it.
Lindae
I have a single port going thru my right jugular on the neck and a dual luman on the left side of my neck. The same surgeon that puts in the port has to take out the port. I have bad veins which is why the 1st port has not been taken out. I HIGHLY recommend getting one. It keeps you from being stuck everytime and as long as you get it flushed and heparanized every month, it should NOT get infected. I have baby veins. The LITERALLY had to use pediatric threading to port me. The 1st 3 days of IViG, we went thru 15 veins, for every 3, 2 would collapse/blow every day. I got a pic first, but IT got infected. With a port, it is sealed after it is deaccessed. While accessed, it is covered. I haved had the single since Dec. 2010. The dual luman power port since July 2011. The dual luman can take dye which means my veins won't have to be accessed during a CT or MRI, which is good since I only have two good veins left; but I have to request the IV team to come down to access the port. with a pic, you have to wrap it in saran wrap before you shower and mine started getting infected in a week; major hassle as it is like living w/an IV 24/7.
Also, the port, feasably can remain accessed for 5-7 days. Personally, I can only tolerate 3. I was getting IViG 5 days a week every other week. I had them access 1st day, remove third; reaccess 4th and remove 5th. They started irratating. But, again, I have fragile veins. The right side of my dual luman has clotted 3 times. But I am not the norm. My first surgeon could not port the second port and had to send me to Northside Hospital for a "vein mappin" or like a GPS of the veins. My veins are like the worst country road in the world [think driving in boston]....however, I do think you will be happy being stuck once as opposed to the iv in the lower extremities of your arms. Most dont know this, but RN's and IV teams cannot access veins any higher than the crook of our elbows. An where else in our body has to be done by a doc or surgeon.
I have a port and have had no problems. I get IVIG every other week. Ive had mine since 12/11. Wishing you the best.
I have a CT rated infusion port. It took way too many sticks to start my infusions, after several IVIG infusions the nurses did the Happy you have a Port dance!!! I developed e-coli after my fourth IVIG. Just in case the infection was port site related, the antibiotics were given in regular IV site.m after five days of antibiotics, doctor did another culture and I was e- coli free but needed 7 more days of the horse strength antibiotics, then 3 weeks by mouth. We used the port for the second round of antibiotics, no problem with the port.
Hey Tammy, I,too, began my road to CICP in Oct 2011. I was tested and tested to eliminate other disease and the only cheese left standing was CIDP. The process of elimination got me there. However the Doc still calls it a “working diagnosis of CIDP”. I also had colon cancr and had radiation treatments to abdominal area. We found an interesting web site about similar symptoms 24 to 25 years AFTER radiation. I am curious to know if any others with CIDP had radiation treatments long ago. These folks (with radiation in their past) sound like my symptoms tingling vibration, horrid pain and numbness from feet up to hips, but they do not appear to have anything to help them other than pain meds and the docs seem to think they are imagining these symptoms. Discussed with my doc and he said, even if my stuff is past radiation related, the same IVIG treat,emits would be the same. I have now had my 34th IVIG with each series of infusions helping me to grow stronger. my feet remain as the main source of pain now. I had Reflexology and it actually made the pain go away only to return 6 hours later. With all the copays and medical expenses, I just could not afford the $50 a pop treatments. I am also considering acupuncture. Has anyOne tried acupuncture for feet that hurt so badly you want to just chop them off at the ankles?
During my stay in the hospital recently, they put a PIC line in, whining am assuming is the same as a port. Since I was in for 9 days o receive 5infusions of IVIg the PIC line made it so much more convenient and I had no problems with it at Ll. I think, depending upon your need for blood work, additional onfusions, you hold definitely consider a PIC line
I too am curious about those who have ports. I’ve had CIDP for 10 years, have never had a port. My husband does have one, for two years, for chemo treatments. He hasn’t had any trouble at all with it. He’s petrified of needles, to put it mildly, so he loves it.
I always get a pic line when in the hospital. But it comes out prior to leaving hospital. Port is implanted under the skin and stay there for years. It is still surgery and I wouldn’t have gotten it but I am a really bad stick with useless veins. not sure that I would have it done just for convenience.
Smannakee said:
During my stay in the hospital recently, they put a PIC line in, whining am assuming is the same as a port. Since I was in for 9 days o receive 5infusions of IVIg the PIC line made it so much more convenient and I had no problems with it at Ll. I think, depending upon your need for blood work, additional onfusions, you hold definitely consider a PIC line
Your replies are very helpful....thank you! During the initial load of 5 days of IVIG, they had so much trouble accessing a vein, they left it in for 4 days once they got it in on the 2nd day. Thank goodness I am still able to work full-time. I am a teacher and am on my feet the entire day though. I can hardly make it to the car most days. Now I am curious from your responses.....what is the difference in a PIC line and a port? I am currently having one treatment every 3 weeks.
Toni,
I would love to know more about acupuncture. Let's look into this together.
Toni King Roberts said:
Hey Tammy, I,too, began my road to CICP in Oct 2011. I was tested and tested to eliminate other disease and the only cheese left standing was CIDP. The process of elimination got me there. However the Doc still calls it a "working diagnosis of CIDP". I also had colon cancr and had radiation treatments to abdominal area. We found an interesting web site about similar symptoms 24 to 25 years AFTER radiation. I am curious to know if any others with CIDP had radiation treatments long ago. These folks (with radiation in their past) sound like my symptoms tingling vibration, horrid pain and numbness from feet up to hips, but they do not appear to have anything to help them other than pain meds and the docs seem to think they are imagining these symptoms. Discussed with my doc and he said, even if my stuff is past radiation related, the same IVIG treat,emits would be the same. I have now had my 34th IVIG with each series of infusions helping me to grow stronger. my feet remain as the main source of pain now. I had Reflexology and it actually made the pain go away only to return 6 hours later. With all the copays and medical expenses, I just could not afford the $50 a pop treatments. I am also considering acupuncture. Has anyOne tried acupuncture for feet that hurt so badly you want to just chop them off at the ankles?
Hi all, I have had CIDP for almost 3 years and get IVIG every 10 days. About 18 months ago I couldn't get blood brawn or infusion started because my veins were giving up.At that time they put in a power port in my upper left breast. What a blessing for me and my infusion team. No more 4-6 sticks to get a start .The surgery was about 45 minutes. Good luck.
A port is under the skin and is virtually invisible when not accessed. The pic is is like having an IV hanging out of your arm all the time. It is more susceptible to Infection and has to be flushed every 7 days. The port has to be flushed every 4 weeks.
Tammy…I live in NOrth Alabama. Although we do have indoor plumbing now, I am not to sure if I can find someone to do acupuncture in this small town of 50,000. My daughter assures me that there is one in town who has been successful I just haven’t had a chance to contact him yet. I was interested in two things 1. How many of y’all have had radiation (25 yrs ago for me) and 2. Has anyone had Reflexologymor acupuncture?
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Tammy said:
Toni,
I would love to know more about acupuncture. Let’s look into this together.
Toni King Roberts said:Hey Tammy, I,too, began my road to CICP in Oct 2011. I was tested and tested to eliminate other disease and the only cheese left standing was CIDP. The process of elimination got me there. However the Doc still calls it a “working diagnosis of CIDP”. I also had colon cancr and had radiation treatments to abdominal area. We found an interesting web site about similar symptoms 24 to 25 years AFTER radiation. I am curious to know if any others with CIDP had radiation treatments long ago. These folks (with radiation in their past) sound like my symptoms tingling vibration, horrid pain and numbness from feet up to hips, but they do not appear to have anything to help them other than pain meds and the docs seem to think they are imagining these symptoms. Discussed with my doc and he said, even if my stuff is past radiation related, the same IVIG treat,emits would be the same. I have now had my 34th IVIG with each series of infusions helping me to grow stronger. my feet remain as the main source of pain now. I had Reflexology and it actually made the pain go away only to return 6 hours later. With all the copays and medical expenses, I just could not afford the $50 a pop treatments. I am also considering acupuncture. Has anyOne tried acupuncture for feet that hurt so badly you want to just chop them off at the ankles?
I have had a Mediport for 6 years at my request, I’m a Nurse Anesthetist. I knew my veins would wear out eventually . I’ve had it replaced once for clotting off 2 years ago. I’ve never experience an infection, however, I perform my own infusion at home on my own time and administer my IVIG my self. I’m very careful how I handle my meds and port.
I am also a Breast Cancer survivor, mastectomy and lymph node removal on the right. I have been getting IVig since Feb 2012. I receive my treatments at home, once a nurse had difficulty starting the IV. After 3 attempts she called another nurse, two tries later they got it started.(they tried using my hand on one attempt it hurt like hell) I was told my veins may be wearing out and I should consider a port. (another nurse said my veins are fine) I have an appointment with a surgeon on Monday to discuss a port. I will not make my decision based on nurse convenience. I have requested using nurses that are familiar with my veins. Good luck we are stronger than we think.
Excellent post!