I have had CIDP since I was 7, so for 9 years now. Around when I was probably 8, I had a PIC line for quite a while. It was very inconvenient for showering, swimming, etc, but didn't have any issues with infection or anything, and it was very nice for when I had to have IVIG twice a week. A couple years later I got a port in my chest, and it was wonderful not having to have my arm stuck several times. As my IVIG doses went down, we tried completely stopping them 2 years ago, and after no signs of getting worse again, about a year ago I had the port removed. Once I stepped on the tube on accident during treatment and yanked the needle out of it, so it hadn't been flushed or anything... it didn't really hurt that much, but it did clot and I had to go to the hospital to have them re-access it and clear out the clot. It wasn't that big of a deal, just inconvenient, but only do to my own clumsiness. Oops. :P Other than that, I had no problems with it. I would advise getting one.
With ports, it is important to have them flushed an hepranized every four weeks. That is THE only inconvenience I see. My veins are SO bad. The ER has to get the IV team down because the can access them and a reg. nurse can't, but rather that abuse the two veins I have left ... ports are the way to go. It takes 20 mins. to access and about 15 to flush; I have to have blood draws every months; while they are accessed, they can draw the blood at the same time... HUGE advantage. DO NOT recommend a pic.
Nancy,
Our situations sound very similar. I had a double masectomy and lymph nodes removed on the left side. I started IVIG Nov. 2011. It hurts to keep using my right hand, but that is our only option right now and I can deal with it. I agree with you totally, that I will not have a port installed for the convenience of the nurses. I don't know how long my veins will hold up, so eventually may have to move to a port. The responses I have gotten here have helped me tremendously as I try to research what is best for my situation. I would love to stay in touch as you try to decide what is best for you as well.
Tammy
nancy said:
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.
A port may sound scary, but it is SO convienent if you are going to have the treatments long term.
http://en.wikipedia.org/wiki/Port_(medical)
http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter
I think it is more a convience to ME; not to the nurses. And it doesn't hurt as much. The nurses see the pain and trauma that the veins go thru. And know this is a life long disease. Spare your veins. They won't last forever.
After going through cancer....all of the surgeries and chemos, I felt like I had beat it and had everything behind me. The diagnosis of CIDP in some ways has caused me to feel angry. I'm quite fortunate that I am still able to work full-time, though it drains me, and have insurance that is covering all of my treatments. I'm having trouble accepting that this is going to be a life long disease and am having to take baby steps in order to get my head around all of this. I know the chemo did a lot of damage to my veins, and I only have one side to work with because of lymph node removal. Having a port installed is probably not a negative, it is just part of the process of me accepting this being life long. This may sound strange but in my head, I keep going back to losing control. I felt that I lost all control of my life with cancer. Before having a port installed, I really want to make sure that I need it....maybe a part of the control process. We all deal with things differently, and I'm just having to really research and take baby steps in this process. My friends here have given me a wealth of info and I really appreciate it!
Port will be a positive Tammy... Cancer is something people can grasp and understand. CIDP, no one understands. So they don't treat it as a real disease. You look healthy. Act healthy. Must Be Healthy. My niece said, " I know you are sick, but I'm pregnant, I've got a lot on my plate, get over it." Okay, her pregnancy is going to end in 9 months, with a happy ending. My CIDP will be with me until I die. And It is painful every day. My pain level is 7-9 every day. Luckily I have a high tolerance. Get the dual luman power port... you won't regret it.
Looks like a duck, walk a duck, well I be damn, must be a duck.... no it's cidp..... ;-)
With the power port, you can get dye if you have to have a ct or mri; your veins are saved. Trust me the nurses are not giving you a "we don't want to waste our time." I was at Piedmont hospital for 4 days. I was stuck 65 times because the doctors order was written "if you cannot find a vein." Well, let me tell you, the IV team will find a vein. And the IV team was crying w/me as the stuck that 65th vein. I now only have 2 good veins. RN's can only stick from the elbow down; IV teams the same. Any other vein has to be by a surgeon. They do have your best interest at heart. When I was 6 mo's all of my veins collapsed. They found one in my foot; they next possibilty was my head.
s
HI I HAVE HAD A PORT FOR 2 1/2 yrs and have no trouble. I receive plasmaphorsis every month. I also have a nurse that comes into my home once a week and flushes it with heprian and changes the dressing. Best of luck. by the way I have had cidp for over 10 yrs ad wuld of given anything to have a port when I was getting my ivig.
does everyone have to get a port at some time? Is there anyone who has been getting IVIG for years and years without vein access problems? I get IVIG every 21 to 28 days and usually they don't have a problem with getting the IV in place. Usually on the first stick - but sometimes the nurse has taken two sticks because my veins in my arms roll away from her. But she said I have good veins. I have only had CIDP for a year. I worry that down the line I will need a port because I think it is normal for what you do when getting IV infusions monthly over a long period of time. My nurse said that she has patients who have been getting IVIG for 13 years and they still only use their veins and don't have a port. She said that if you have good veins to begin with and you alternate your IV's every time to use a different vein you should be able to receive IVs for many years without problems. I am skeptical and want to know if anyone has been getting IVIG for 10 or 13 or more years to reassure me. I recently have started to receive my IG under the skin - SCIG. I have been doing this for a month and I hate it and want to go back to IV administration. The SQ administration is more time consuming. I have to stick myself twice a week and it takes up to 2 hours twice weekly where with IV it was 4-5 hours once a month. The main reason I went to SCID is that I was deathly afraid of needing a port in my future. But if this is not the case I would rather get it IV instead of SQ. the little needles you put in your skin hurt more than the IV does and the site gets red, burning, itchy and you get a puffy lump where the drug infuses that takes days to go down. My tummy looks like I am Pregnant!
The port, for me, is easier than having my veins stuck. It is faster than an IV and more efficient. I don't even know they are there. The PCP says there is a risk of infection, but the nurses say as long as I get them flushed and hepranized every 4 weeks there should be no problem. Of course, as I said earlier in this thread, I have HORRIBLE pediactric veins. They are so scarred from potassium infusions and being accessed so many times through the years and are flat, thin and small. They blow, roll, and not that any one was meant to be, but my body was not built to be sick.
This has been extremely helpful hearing of others experiences with a port. I feel better informed for my consult appointment with the surgeon today. I too, am in denial that CIDP is a life time disease and the infusions will be part of my life. I guess I need to remind myself how fortunate I am to have medical coverage and the infusions have stopped the progression before I was unable to walk.(I was getting close) Is anyone taking herbal supplements to help control inflammation? I am currently taking Zyflamend. I would like to avoid steroids.
I hate steroids. I refuse to take them. The make me angry, mad and I can understand how a baseball player can hit the ball out of the park on them; I also bloat up and gain weight. I want to throw my sweet kitty cat over the deck into the lake (just kidding, but not exactly) on them. I have not found anything except IM/IV benadryl to control the pain and my dr.'s won't prescribe it. Why? I don't know. One said "too much sedation" one said "scar tissue" But they will give me narcotics.... go figure.
I take Vitamin B12 via injection once a month; Vitamin D PO; Milk Thistle and Lechitin to support the Liver because of all of the drugs. All drugs either are processed through the kidney or the liver. I only have one kidney (the right was taken because of polycystic kidney disease @ 21 years of age and I have CKD). I have not tried herbal for inflammation. Try to limit my intake of pills to a minimum. drugs.com will cross check all of your pills for interactions btw.
Hey you guys…everyone is talking about “lifetime” illness. The most recent newsletter from GBS/CIDP Foundation made me do the “I choose the top 11% Dance”… The newsletter tells of a study for SCORING CIDP stages. Of the ones studied 11% were considered CURED with 5 years treatment free. Next stage was “in remission” which was fewer than 5 years, treat,ent free. That percentage was around 24% (I loaned my newsletter and don’t remember exactly). The next, actually previous stage was considered Active/with treatments and I think the percentage was around 44%. You can go to the GBS/CIDP Foundation and sign up for this free newsletter and back issues can also be ordered. I have chosen the 11% stage for myself…after this Scoring format becomes uniform, I believe our medical professionals will better be able to let us know our status and we will have a goal to march toward.
I also take a B12 shot monthly just for good measure. I completed my 34th IVIG infusion in JUne and have 5 more the end of July. I take five over a three day time frame with a 3 hr drip. I have had no adverse side effects. This brand of IVIG does not make my hair fall out as the other brand did. My hair is coming back in Curly and dark brown…as opposed to gray and straight. Go figure.
My theory is never give up for a cure, but don’t be discourage if there isn’t. I was diagnosed in 2002. My neurologist kept telling me I was about over it, so when I had a severe relapse it was quite discouraging. Top neurologist at Barnes Hospital in St. Louis said my case was the worst he’d seen. At that time, there was very little information out, no support groups. Now there are so many more doctors and studies involved, so chances of a cure are so much more promising. New treatments available now. Keep faith!
I am being given nothing for pain; doctors the say they do not understand the disease. Little or no support. Very frustrating. I am allergic to most narcotics. They don't want to work w/me on pain mgmt. They "will see if the can find the time" to read what I put in front of the on this disease. I finallly have a referral back to the diagnosing neuro. I hate being doped up on narcotics. Anti-inflammatories don't work on nerve pain. For Me. And they DON"T Listen. Am I so different in that My doctors don't lisen?
And to the earlier question, it will be 10 years this coming December and I do not have a port. I hate infusions in the hands and do only the vein in the bend of my arm. No problem so far. IVIG every 3 weeks currently.
I have been rotating my forearm veins that run along the top of the arm. Mine are big but they roll for some nurses. Some nurses get them right in and some need two sticks. I hate hand IV's also and have used the bend in my arm a few times. It is good to hear that maybe I will be able to continue with IVIG and not need a port.