Tuesday, September 22, 2009

Installing a Port-a-cath for chemotherapy infusion

My daughter, Meaghan, is at the University of New Mexico Outpatient Treatment Center (OTC) today for her first dose of two for the second round infusions of Rituximab (Rituxan).

Rituxan Official FDA information, side effects and uses.
http://www.drugs.com/pro/rituxan.html


This Rituxan medication is the next step in efforts to achieve remission with her Churg-Strauss Syndrom (CSS) vasculitis. She was taking Methotrexate and Prednisone for the past eighteen months with some success at controlling symptoms, but no remission. She flared last March, and started Rituxan in May. Since then, she has been able to taper completely off the Methotrexate, and lower her Prednisone dosage.

The numerous negative side effects associated with both Methotrexate and Prednisone make lower dosages a significant improvement. The documented side effects of Rituxan are neligible compared to Methotrexate and Prednisone, so we hope this will not only control her CSS, but also improve her long term prognosis by reducing the risks of other diseases related to side effects.

Because she has become a long-term infusion patient, her doctor recommends she have a port-a-cath installed. This will make bloodwork and other infusions requiring a vein puncture easier and safer.

Today was a case in point. For whatever reason, her veins were not cooperative, and it took several attempts before the nurses gave up, and eventually a paramedic was called in to find a vein with the assistance of an ultrasonic imaging scanner. This process of enduring nine or tens IV attempts delayed her infusion by almost four hours, and caused her a lot of suffering.

The doctors talk about this "port" as if it were no big deal. It is fairly common and they see few incidents of complications. They described to her what those complications can be. My research seems to indicate that the rate of complications is something like 1.04/1000 (0.01%).

The complications range from a minor site infection that is treatable, to blockage of the port. Certain more serious complications require removal of the port. These are all rare, and the more serious are the most rare.

That information correlates with a summary web page I found on this topic that I think details the entire issue pretty well according to what the doctors tell me and from what I have been able to research myself:

Portacath Insertion
http://www.sir.net.au/portacath_pi.html
After researching this fairly comprehensively, it seems the Port-a-Cath method of installing a permanent catheter is cheaper and safer than most other choices.

This is not really "permanent" in the traditional usage of the word. When she is successfully in remission, then the Port-a-Cath will be removed.

Big news, but it will make blood draws easier, and it will certainly be more comfortable than the peripheral IV method of administering infusion therapy. The other benefit to this will be that emergency medical personnel will have an easy method for administering medications should she ever have an neeed for urgent care.

So it seems this Port-a-Cath will be more efficient and more economical in the long run. Plus this promises to be more comfortable for the patient, who in this case is my daughter. I am all for sparing her additional pain and suffering.

: Joseph

To other vasculitis patients:
So, what's your story? Let me know how you are doing. You can send me Email.

Joseph W. Carpenter
Email

Thursday, September 17, 2009

September Chapter Meeting Report

Location:
McAlister's Deli
2200-A Louisiana Boulevard, NE
Albuquerque NM 87110

Attendees:
Joseph Carpenter
Meaghan Carpenter

I will keep this short because Meaghan is not feeling well.

We enjoyed the change of pace here at McAllisters. They have booths or chairs and free wireless. It is also not too busy in the evenings, so this is a good place.

The menu is varied enough that someone could have a full dinner, soup, sandwich, or just a cup of coffee or tea. The point is I like to pick places that have a range of price options.

The Uptown Mall is a bit more upscale than some other places, but I will keep looking in this area for next months meeting. I like that is is centrally located. While The Albuquerque Grill was technically more centrally located if you look at the absolute center of the city, this uptown mall area has three malls and is well known by everyone who lives in the area.

We will be exploring other venues and also we will be going to social events. Like movies, the zoo, etc. My thought there is any active members will share in the decision about where we go each month. We will wear VF gear and just keep spreading the word about vasculitis. Just like we do just about every day.

I wear the VF pin every day and people ask me about that, which leads to a conversation about vasculitis. Not sure how widely that spreads the news, but I figure every bit helps.

I also spoke to some booth bolders at the NM State Fair yesterday, and learned who the significant people are to talk to when we get ready to try that. This year I just could not see manning a booth by myself for two weeks. Plus there is a booth fee, and we have no budget. But that is on the list for the future.

Perhaps I could trade time for space in a deal where we man someone else's booth for part of the time, and in return they allow us to put VF information on their table. I will speak to American Red Cross, etc, about that idea for future events.

Anyway, we are off to look at the bookstore. See you next month!

:Joseph W. Carpenter
Chapter Cook and Dish Washer in Chief

Wednesday, September 16, 2009

September Chapter Meeting at McAllisters (uptown)

Hello all you (hopefully) happy campers,

We have our monthly meeting of the NM chapter of the Vasculitis Foundation tomorrow night, September 17th at 6PM.

This month is a little different. We are going to try some new places and see what works best.

This month, we are trying out McAllisters Deli, in the Uptown Mall.

McAlister's Deli - Locations
"2200-A Louisiana Boulevard, NE
Albuquerque NM 87110
t: 505-884-5004
f: 505-884-5005
WiFi Enabled"
http://www.mcalistersdeli.com/locations/zipcode.asp

This is actually a little cheaper than the hotel restaurant we have been going to. It is also busier, so it is harder to reserve tables without confirmed number in the party.

Lets hope we have room.

See you all tomorrow night!

Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.