Well it's been a busy first 7 months with MG. I had my first round of IVIG in early June and I had a bad reaction to the Gammunex IVIG which required blood transfusions as I lost over half of my red blood cells.

We decided to try IVIG again as I'm really having a rough time with MG. since April I went from being fairly active to now needing a cane to go anywhere and have modest problems swallowing and breathing. The plan was to try a different brand of IVIG with the 5 day schedule for infusion at a dosage of 2 grams per kilogram.

To do this safely and to accommodate the veins in my arms that were ruined during the last IVIG, I had a PICC central line put in the week before. This is a catheter that enters a large vein in my arm under the bicep, the catheter is then threaded through the arteries until it reaches a place next to the upper atrium of the heart. Sticking out of your arm is a IV connector with a dermal anchor and a very strong bandage.

Well the PICC line was great, no needles or problems restarting the IV 3 or 4 times a day, just hook up and go. I'm glad to say that I successfully tolerated the IVIG, the brand this time was Gammagard. Overall I had a few days of fatigue and increased MG symptoms, but I am now really seeing the benefit and feeling better. I guess it takes about a week to see the full benefit.

The plan going forward is this week I have an appt with the MG clinic at Massachsettes General Hospital to review the possibility of a thymectomy. After that I have an appointment with a general surgeon to have a surgical pricedure to get a permanent IV central line port put into my chest. This is a device that is put under your skin in your upper chest and a catheter from that is threaded through your arteries to a place right next to the upper atrium of the heart. I believe they call this a central line.

The device under the skin is a little over an inch in diameter and made of titanium expect for the top which is made from thick silicone rubber. As it sits just under the skin, a special needle would poke through the skin and through the silicone rubber into the port, at this point you can inject medications or draw blood through the device. The version of the device I will be getting can stay implanted for 15 years before it needs to be changed.

After the port is put in, my neuro wants me to start getting IVIG for 5 days every 8 weeks. This is in addition to th Mestinon and Imuran I take for MG and Crohns.


Joe

Hi Joe,

You will love your port. I've had one for 12 years.

If you are thin, ask your surgeon to consider placing a low profile or "slimport.". That's what I have and it is barely noticeable. Some of the regular ones can be quite large and get knocked into more easily or will show through shirts.

Good luck!

Thanks for the response, I do have some questions if you don't mind....

How much did the surgery hurt and what was the recovery time?

Have had the same port for those 12 years?

Do you flush it with just saline or saline with heparin?

Are you planning on keeping the port longer, does you doctor talk about removing it?

Thanks

Joe

Hi,

The placement was not really painful. The area was sore for a few days, but otherwise was no big deal. I have the same one. No one talks about removing it and I will keep it until it fails. Mine is flushed with saline following the infusion and heparin to finish. It's important to flush it using the "push stop" method to create turbulence inside the port to really scrub out all the deposits.