Vortex Ports

    • July 6, 2012 at 2:25 am

      Have been getting PE off and on since ’96. Most of the exchanges have been done with vein punctures as all five perma-caths that were implanted got infected and were very short lived. The last one put me in the hospital for 10 days with 24-7 IV antibiotics, so that is no longer an option for me.
      I get PE every three weeks now and the past four times the nurses have had difficulty getting good sticks and told me today I need to consider a Vortex Port.
      Does anyone have one of these, or anyone with past experience with one that can give me some first had feed back?
      Have read lots of stuff on the net, but nothing beets personal experiences. Thanks for any feed back.
      Fred

    • Anonymous
      July 6, 2012 at 3:03 pm

      My husband has a Power Port which I think is similar. He loves it. His veins for IVIG were hard to find and he was getting stuck 2 or 3 times each treatment. No problems with it at all (knock on wood). It was a simple procedure getting it, it healed quickly and he is very glad he got it. Emily’s mom Kelly has lots of experience with ports–maybe she will see your post and respond.

    • July 6, 2012 at 4:17 pm

      Hey Fred -As Laurel said, I have quite a bit of experience with this stuff. My daughter had a Broviac catheter (similar to your Permcath but with only 1 lumen) for a few months when she was 4 years old. It got infected & then we switched to a port. I believe she had a Port A Cath….not 100% on that though. It’s been so long, lol. Her port lasted from August 31, 2006-April 29, 2011.

      Permacath’s are more prone to infection & are usually only used for short periods of time due to that risk. A port is MUCH less likely to get an infection because it is under the skin. As long as your skin in cleaned thoroughly (I requested cleaning with an alcohol swab & then a Chloraprep) and proper sterile technique is used, there is low risk of infection. Make sure your nurse wears a mask & gloves too. The nurse should also put a sterile bandage (usually a Tegaderm) over the port immediately after it is accessed. Basically, just make sure you have a nurse that knows what they are doing & do NOT be afraid to ask questions or speak up if you are concerned.

      You can let the nurse know you are “prone to infection” & they should take extra care. Emily got that label, after her Broviac infection, and everyone had to be even more careful while accessing her port because of it.

      The surgery to get your port put in is outpatient. You will probably be sore for a few days afterwards & there will probably be some bruising at the site. Find a really good surgeon & ask him/her to use dissolvable stitches. You will be advised to keep the site bandaged & dry for a few days after surgery to prevent infection of the incision. After that the only time it has to be covered is while it is accessed.

      Honestly, getting a port for Emily was the very best decision I could have made for her at that time. I highly recommend them if you are having issues with vein access. It made life so much less stressful & her port lasted for nearly 5 years. It would have lasted longer but she grew (doubled in size) and the catheter wasn’t positioned correctly anymore.

      If you have any questions feel free to ask.
      Kelly

    • July 7, 2012 at 1:24 am

      Thanks guys.
      Kelly, how long was it from the time they put the port in Emily until they could access it? What brand port does she have? I understand they come in single and double line configurations. Fortunately the same Red Cross nurses that have been doing my vein sticks for PE already know about the infections with the past permcath’s and are really good about sterile conditions. I’ve had the same nurses for the past 5-6 years. They have also recommended a vascular surgeon who has put in lines for current and past patients, so I am going to start the search.
      I do have a heart condition (11 stints) and have to get clearance for the surgery from the cardiologist who I see next week.
      After all the problems with the permcath’s just want to get come positive feedback on the ports before I jump in.
      I really appreciate your feed back. Hope Emily is doing well.
      Fred

    • July 7, 2012 at 4:29 am

      Emily doesn’t currently have a port. She’s getting IV’s now. She did have a Port A Cath, I believe. The port can be accessed immediately. The surgeon offered to leave it accessed after surgery so she could get a treatment the next day. Emily is allergic to Tegaderm (what they use to cover an accessed port) and he didn’t have any bandages she wasn’t allergic to – so she was accessed the very next day after surgery. She had her surgery on a Thursday, treatment on Friday & on Sunday she was well enough to go to the Renaissance Festival. She started her first day of kindergarten that Monday. Keep in mind she was 4 (about a week shy of 5).

      I think you will have to meet with the cardiologist & having a vascular surgeon is probably a good decision – since you do have heart issues.

      I really highly recommend getting a port. It just makes life so much easier.

      Emily is doing well…thank you.

      Kelly

    • Anonymous
      July 7, 2012 at 5:13 am

      I have a power port implanted. The implant was on Friday and I used it for the first time the following Tuesday. It sure better than 6-10 tries to get a IV started every two weeks.

      Jim C 🙂

    • July 7, 2012 at 11:00 pm

      Thanks Kelly.
      Jim I now know about the multiple sticks to get into the vein good. I will look up the power port.
      Fred

    • July 8, 2012 at 3:36 am

      A typical implanted port is meant for infusions, not for plasmapheresis or dialysis. The reason relates to blood flow rates. A very fast infusion is done at about 8 ml/min. Plasmapheresis flow rates are more like 80 ml/min and dialysis flows more like 400 ml/min. High flow through a narrow needle leads to destruction of red blood cells, so there is a minimum size for a plasmapheresis needle. The Vortex port mentioned above is supposed to be accessed with a 19 to 22 gauge needle. A normal plasmaphersis needle is at least 18 gauge and often larger. So I think this port is meant for an infusion. That said, I could find nothing in the literature that specifically limits the flow rate, only that the internal pressure cannot exceed 40 psig. The calculation to convert the pressure to a flow rate is not straightforward, so I cannot say the Vortex port won’t work. Presumably these ports have worked for other dialysis and plasmapheresis patients, otherwise the nurse would have have suggested it. Still, if you get your plasmapheresis in an infusion clinic, I would check with a doctor with lots of experience with plasmapheresis.

      Godspeed in finding a good solution
      MarkEns

    • July 8, 2012 at 7:29 pm

      Hey Mark,
      Thanks for the input. I currently get my PE at the hospital’s ambulatory care unit. The PE nurses said I would need a double lumen port and the flow rate would be slower than with the traditional 18 ga needles. Told me the exchange would take 20-30 minutes longer with a port because of the lower pressures and flow rate. If that is the only down side, I can live with that. The last two exchanges were done using a 22 ga angio cath for the return as they could not find a place for the 18 ga needle, which is why I am digging into the possibility of the port. Have also seen a change in flow rates over the past six months as my veins dry up. They used to run machine at a 110-120 flow rate but this is now slowed to 70-75 the past two exchanges. Next step will be to find a good vascular surgeon who has implanted a bunch of these and get his/her take on use for PE. Appreciate the input.
      Fred

    • Anonymous
      July 23, 2012 at 2:10 pm

      Hello Everyone,
      My husband has a rare form of CIDP which requires him to take plasmapheresis treatments every third day in series of 7 treatments, then his body can only go about a month and then he has to do it again. He is having surgery tomorrow and will be the first person that they have ever installed the new double port into his chest for permanent lines for the treatments. They told us that it is so new that it had never been displayed and the reps had never even seen one, it was just invented. So they are flying the special unit, and the rep in town for his surgery and had to get special needles to be able to do the treatments once it heals. He is having his surgery at Memorial Medical Center in Springfield, IL tomorrow, July 24th at 8:30am. So I am very hopeful that this will be much better than the way through the neck they had been going until they all became blocked for so much use and he got a massive staph infection in his blood from the neck port. They told him that if he did not have this procedure done that they would have to put him in hospital and he would have to stay while they put it in his femoral artery in his groin to do the treatments, so we are keeping fingers crossed. He also has other dieseases such as COPD, Celiac Sprue, End Stage Renal Failure, Sarcoidosis, PTSD, and Gulf War Illness. The military is not helping with anything and I have found that his one treatment from end of January costs out of pocket $3000.00, and he has had 19 treatments so far, before the staph infection. The new port that they are installing will allow them to be able to work with the 80ml/minute instead of the normal 40ml/minute that is what the current ports do. I will let everyone know how this goes with this new port system, considering it is never been tested before, so he is a ginnypig so to speak, but he is getting used to that with all of the other surgeries and things that they have had him on. Hopefully this will be able to help get him off some of the meds, he is on 43 pills per day at this time.

    • Anonymous
      July 23, 2012 at 2:21 pm

      I also forgot to mention that the recovery time is 2 weeks before the ports can be used and they will be implanted under the skin in his chest. He will have to do these treatments for the rest of his life and will never have a chance to step down, to other things considering the rarety of his condition, per the neurologist, the pathologist, and the primary doctor. But we can always keep our fingers crossed that he will be able to taste again and hopefully be able to feel me touching his face. His form of CIDP has affected all of the nerves in the body, not just legs or feet, it has taken his hands, arms, torso, his sight issues, his sense of touch to his face or anywhere on his body, and even his sense of taste, he can not taste anything or it tastes like hot white pepper to him.
      Thank you all for listening to our story,
      Tina

    • Anonymous
      July 23, 2012 at 4:00 pm

      I will be saying a prayer that all goes well Tina. Your husband sure has a lot going on medically. I wish you two the best, and please keep us posted on how he does.
      Laurel

    • July 26, 2012 at 12:12 am

      Hi Tina,
      I sure hope your husband does well with the new port. It sure sound like his CIDP really did a number on him.
      Since I am actively looking into a port my self, I would be very interested in knowing more about the new version your husband is getting and how it works once treatments begin.
      Everything I have found out so far is pointing me toward the Power Port with dual lumes. I am working directly with the local Red Cross aphersis supervisor so that what I ultimately choose is sufficient to handle the flow rate.
      Sure wish you all the best and pray everything goes well with the implant and subsequent exchanges. As Laurel said, please keep us posted.
      Fred

    • Anonymous
      August 5, 2012 at 4:40 pm

      Well after 5 years of getting poked several times each month for IVIG I finally broke down and had a port inserted.
      Just had it done on Friday. Thanks to everyone on here for sharing your stories and reassuring me that this is the right choice for me.

      Cheers,
      Rhonda

    • Anonymous
      October 4, 2012 at 4:24 pm

      I just had my port removed after many years and I really missed it recently as the hospital could not start an IV on my due to all the scar tissue from so many years of poking. They took out my port since I moved to SubQ last year. I had the nurse ask me in the ER if I had a Power port and I had never heard that term. I had just a regular implanted valve port or cath.

      What is a powerport?

       

    • October 10, 2012 at 7:24 pm

      After nearly three months, the decision was finally made by my neuro that I would have to have two ports implanted if the plasma exchanges would be continued as veins finally gave out.  Tomorrow morning I am scheduled to have bi-lateral Vortex ports implanted.

      Have many concerns, but since PE has been the only treatment to keep my CIDP progression slowed, have no other alternatives.  Will let you all know how the implants go. Have to wait 2-3 weeks to use them, but will update my post so others who may be considering a port will have the benefit of my experiences.