Port ?

I would check previous posts on getting a chest port.
I for one after 90 infusions over 16 months got a chest port. It hurt for a while like any hospital surgery but now one tiny needle insertion to start my 6 monthly IVIG’s.

Had my port 2 and 1/2 years.Yes, I am glad I got it.
It’s totally up to you to decide.

I can’t say enough good things about my daughter’s port. She first got it when she was 4 years old (just a few days shy of 5) and it’s been a lifesaver for her.

The access is very easy. We put Emla (a numbing cream) over it about 1-2 hours before the nurse comes & she doesn’t feel the poke. She said she feels a little bit of pressure when the nurse accesses it but it’s much better than getting an IV.

As long as you have an experienced nurse access it, I think they are great. You want someone who follows VERY strict sterile procedure so it doesn’t get infected.

Make sure you find a great surgeon to put it in also – that helps quite a bit too as placement is important.

Kelly

Ditto what Kelly said. The only problem we have is that the port sometimes moves around. I suspect it is because Kevie wrestles with his friends, football, trampoline etc. you get the point. Good luck.
Dawn Kevies mom
PS something we learned the hard way, if your treatment is going to be close to when the surgery is, either make sure you schedule the surgery right after treatment, or have the surgeon leave you accessed if your treatment is a couple of days after the surgery. You will need a little time to heal and hve the swelling go down before easy access can be achieved. We learned the hard way.

Hi,
I have had a port for abt 4.5 yrs… actually, I’m on my second port…

I agree with both of the other posters that a good surgeon and port placement are essential to sucess. Additionally, always accessing with the utmost care to sterile procedure.

Things that have been less sucessful for me, and required the placement of a second port:
1. The first port was put in by a general surgeon. The first port was too large for my body type, I’m a relatively thin person. It was a subclavian placement, which allowed the catheter line to get compressed between my clavicle and subclavian muscle and have line stoppages.
2. The surgeon and infusion co working with my first port insisted that there always be a blood return and to do my routine blood draws through the port. A blood return is NOT necessary to the function of a port. Blood return techniques and blood draws into the cath line create the possibility of fibrin build up at the end of the cath or within the line. Blood in the cath line is very sticky, and can be a place to attact bacteria if sterile proceedures are compromised.
3. I lost my first port due to fibrin build up.

Port #2 has been a jugular placement, which has worked out much better for my anatomy and lifestyle. I learned how to access the port myeslf, and I know if things are working correctly instead of having someone else telling me.
Port#2 has never had a blood draw, or blood return through it. It always flushes easily, and administration of substances into the port have never been a problem.
Port#2 is a “mini” port. It is less visible on the surface of my body than my first port, more stable and easier to get a correct access. It was placed on muscle abt 2 inches below my clavicle, and 2 inches medial to my bra strap making arm and shoulder movements totally comfortable without irritation. It is also a bit lower than the shoulder strap on an auto seat belt.
Another bonus to me, is that when wearing a halter style bathing suit top, the port bump is completely covered.
Port#2 was placed in a larger hospital under x-ray guidance with a local ansethesia by an interventional radiologist. I was also given oral medication for relaxation and fell asleep as soon as the procedure was over. Upon awaking, there was a wonderful ice pack on the site, which went home with me. The ice packing right after and for 24 hrs post surgery as well as the limited medication minimized the side effects of the surgery and I recovered much more easily than after the first round.

I have monthly blood drawns by a wonderful phlibotomist who can find my small peripheral veins with a thin butterfly needle.

I feel like I have blabbed on… I hope my experiences will help you to make the best decsion for you.
Oh, yes, I am very, very grateful for my port… It makes infusions much more comfortable and reduces stress.
Best of luck,
Erin

I have a port and I wouldn’t give it up. Dawn and Kelly’s advice is good advice. Since you are getting the IVIG once a month that will keep the port flushed adequately otherwise you would have to have it reheparinized if not used each month. I have gone 6 weeks without flushing it and it was fine. You can also have labs drawn from the port to decrease the number of sticks you get. When you run out of veins its a good alternative.

Information for women and ports:
My vascular surgeon drew a black line right above the bra I wore so the port wouldn’t rub against it. I made sure before the surgery it wasn’t washed off.This way when I was laying on the surgery table the doctor knew exactly where to put it.

I learned that having a front hook exercise bra to wear for the next 3-4 days especially in bed kept the breast area from moving-less pain.This piece of advice was extremely helpful. Plus I could put a little ice pack in there.

Had my chest port for 2 and 1/2 years. It’s worked well for 180 infusions.
I had asked my neurologist who he thought was the best surgeon to do my port as he had so many IVIG clients.
It took a while to heal as any out-patient surgery procedure would.

***Check previous posts on getting ports.

I have had cidp since 2000 and last summer my veins finally gave in and no one could start a line on my for infusions. I had my port surgery and after about a month or so of healing time I rarely now it is there and my infusions are a breeze – especially since I do them at home.

I wish I would have done it years early!

Just so you know…

Emily’s neurologist did not want her to get a port at all. He was very much against it. The MDA neuro was against the port as well.

So if your dr is against it, you can still get it. We did & are much better for it.

I’ll clean up my inbox right now.

Kelly

We had a port put in for our daughter after using IV in the arm or hand for a couple years and couldn’t be happier that we did. She’s been getting treatments for 8 years now and the port has reduced so much of the stress she had about going to the hospital.

One thing that we didn’t think about was where they placed the port. She has a noticeable scar now that shows above her bra or swim suit top. Maybe it’s there for a reason, but my 13 doesn’t like that it shows.

Kelly – I’m wondering why your doctor was against your getting a port for Emily? It seems like a natural thing to protect the veins from frequent sticks.

Steveh – Emily’s neuro is worried about infections. He used to work at a hospital in Minnesota & apparently he saw some pretty bad port infections there. He’s just a worry wart.

Kelly

Hello all. It’s been a while since I have posted, but I try to keep up with what’s going on with everyone.
What type of “port” is everyone refering to? I had four failed central lines and my neuro says I don’t have any other options. I am beginning to wonder if he is on top of what’s out there. I am now getting plasma exchanges every three weeks, then 100 grams of Gamunex the following day. The Gamunex is starting to scar my veins pretty bad and they are running out of places to put the needles.
With the success you all are talking about with the ports, it sure would be nice to explore this possiblity. Any feedback is appreciated. Thanks,
Fred

Fred –

Here is a link to info on a port. It’s from a cancer website but ports are commonly used to administer chemo.

[url]http://www.roswellpark.org/Patient_Care/Types_of_Cancer/Esophageal/Esophageal_Center_Patient_Handbook/Procedures/Mediport[/url]

There are only 6 veins in the body to put a port in – 2 in each side of the neck & 1 in each arm. You can also (VERY VERY rarely) have one put in the groin area but it is not preferred because of infection – so no one ever really counts it.

Hope that helps.
Kelly

Thanks Kelly. I’ll check out the site today.
Fred

Kelly,
I looked up the Rosewellpark site and got the information on the port. It was very helpful, so I printed it off to take with me to my next doctors appointment. Perhaps he will now agree that there are alternatives to central lines. Thanks for the help.
Fred

Fred – Your welcome & good luck! Let us know how it goes.

Kelly

Love my port! I’m on my second one too. There’s a lot of great info in this thread!

Hey Fred…I have a gortex graph for my plasma exchange and I love it. Most people can get them in their arms, but I have terrible veins so they put it in my right thigh. I’ve had it over 1 year now and it works great. The risk of infection is greatly reduced because there is no open access. It is accessed every week with a couple of needles and when the plasmapheresis is complete, they pull the needles. What’s really nice is that I can shower everyday & never have to worry about getting the site wet. As far as a port, I have one of those too. I get my IVIG on a regular basis through it and I absolutely love it. Both the graph & the port were a Godsend and I’m so happy I have a progressive doctor who also takes my quality of life into consideration when making decisions.

rcatffire,
How long have you had your gortex graph? This is another area I am finding my doctor is apparantely not up to speed. He told me this type graph would not work long term for PP as they tend to clot. Have you had any such problems? Can they not do PP and IVIG through the port or the graph? Would like to know why you need both. What type port do you have?
I really want to be up to speed when I see my neuro next month. As much as I like him, and he’s been on top of things most of the past 12 years, the fact that he did not know anything about Gamunex, the ports and some question about his understanding of the gortex, I am beginning to wonder if his concentration on MS is bypassing my CIDP. Thanks for your input.
Fred

Lesa,
How long did you have your first port and why did you have it replaced?
Fred

Plasmapheresis cannot be done through a port designed for infusions. It is best for the patient to use the smallest diameter tubing practical for the task at hand. In an infusion, the flow rates are relatively low (less than 1000 ml/hr) and red blood cells do not pass through the port. In plasmapheresis, the flow rate is usually around 5000 ml/hr and red blood cells pass through the access. Because red blood cells are damaged by high velocity, the high flow rate used in plasmapheresis means that big tubing must be used, tubing that is much bigger than what is used for infusions.

It is theoretically possibly to use the plasmapheresis venous access for infusions. I think, however, the infusion does not have a high enough flow rate to keep blood out of the tubing. I suspect that once blood enters the tubing, it tends to clot. It might be possible to administer an anti-coagulant, but I suspect a high dose would be needed.

MarkEns

I’ve had a gortex graph for over a year now. At first I had a little trouble with it because of some narrowing above the graph. I went to the regular cath lab to have it maintenanced & they tried to keep it open, but were unsuccessful…big mistake on my part. After 2 attempts with the cath lab, I went and talked to the surgeon who put it in. He said it was an easy fix. He indicated the cath lab just wasn’t doing the correct procedure to open it up. I went in for day surgery & the surgeon fixed the narrowing with a stint. That was 11 mos ago. I’ve not had a problem since. It should be noted that I am prone to blood clots, having numerous clots over the years, & I haven’t had a problem since the stint despite the fact that I’ve been off warfarin for a year now. I will say that if you do go with a graph, make sure you have an excellent surgeon who is capable of fixing the graph. I was told before the original graph placement that sometimes the graphs become unusable, but I’ve not met anyone who has had that problem, nor do I have that problem. Good luck!

Sorry, forgot to answer all your questions. I was told that PP can’t run through a port because it is too much volume & pressure. A graph is larger tubing than that used in a port. As far as why I have both, the port is simpler to use for IVIG. It requires a smaller needle & when I’m done, the needle is just disconnected & a gauze is taped over it. When the graph is accessed, it uses large needles used for dialysis & when it is deaccessed, I have to sit and hold pressure on it for around 10 minutes to ensure it is sealed. Otherwise, I get like a sprinkler system effect of blood pouring out…LOL As far as your other question…what type of port…I’m not sure. I think they called it a portacath, but I can’t say that’s positively what it is. I do know it isn’t a powerport & I’ve never had a problem. I just access it once a week & it keeps working. The port was placed in 2006. Hope that helps!

[QUOTE=GAVol]rcatffire,
How long have you had your gortex graph? This is another area I am finding my doctor is apparantely not up to speed. He told me this type graph would not work long term for PP as they tend to clot. Have you had any such problems? Can they not do PP and IVIG through the port or the graph? Would like to know why you need both. What type port do you have?

Dear Rhonda:

I’m a CIDP patient and I’ve been receiving IVIg since September 2006. I decided to have a port (new IVIg protocol for me) in March 2007, and it’s been a “lifesaver”, but a real pain too. When they placed it I got a Pneumothorax, so they had to place a chest tube and I had to stay in the hospital :(. Then, when I thought I was ready to use it, it got clotted (make sure it gets flushed with Heparin before and after every use), so they hospitalized me for a venogram and a thrombolytic therapy :(. A month later, an inexperienced nurse placed the needle incorrectly and my chest cavity got infiltrated with the IVIg, Saline and Heparin and guess what? YES! They hospitalized me because of the risks of skin necrosis. Last, but not less important, my port got infected (I still don’t know how, because I consider myself an OCD person… JOKING!!! :p) and I got a nasty bacteremia (pseudomonal sepsis) that kept me in the hospital for 16 days and not only did I almost lose my port, but, I was close to not been able to write this. In September 2007, I finally found a company whose nurses are experienced in ports and I started my Mayo Clinic protocol :). Now, I’m able to enjoy my port and I have to tell you that it’s been great, but every time I use it I cant’ help but think about everything that has happened (bittersweet).

With all due respect to the persons who have contributed with their opinions I believe:

1. Getting a port should be a well thought out decision. The pros and cons should be measured in order to make your decision based on usage and dosage, the condition of your peripheral veins, and the medical care available to you.
2. The port should only be used for your IVIg or other medication (approved by your primary doctor) in order to minimize the risk of clot and infection. This is why I believe it should not be used to draw blood. And, yes, it can get infected even though it’s under your skin.
3. I have been receiving my IVIg at home, for the last 3 ½ years and I would NEVER receive it without having a nurse present. An experienced nurse will be able to recognize the symptoms of an allergic reaction. In my case, everything was perfect, from September 2007 until February 2009, when I started to present allergic reactions. The second time I had the allergic reaction, my nurse had to call an ambulance while she keep me stabilized. Now she have to perform another protocol with a “few” more medications to keep me from having those reactions. Besides, you’re blood pressure and body temperature might drop. You might start vomiting uncontrollably. Diarrhea and migraine headaches are not uncommon. I have experienced all of these symptoms in the past and have been lucky to have a nurse beside me.

I hope my experiences help you, and others, in making an informed decision. God bless you!