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.

Thursday, August 20, 2009

Health care reform: Insurance insider speaks out

Most agree we need to improve the health care system in America and the way it is financed.

We need MEANINGFUL HEALTH CARE REFORM. Not a patch, not a patsy, not a lie intended to sooth without addressing the core problems. We need a meaningful solution.

For myself, I worry about whether or not my daughter will one day be able to get insurance. The words "preexisting condition" hang out there like a death nell, ringing in the language some claim adjuster may one day use to deny her coverage and refuse to pay her medical bills.

[Knock on wood. Knock on wood. Knock on wood.]

Without other options, it is possible that one day Medicare may be her only hope for assistance with managing this expensive vasculitis condition, so how all these potential changes will affect Medicare and Medicaid is also a big concern for our family.

We who are collectively patients, caregivers, doctors, nurses, etc... could take action to save some expensive waste in the clinics and hospitals and bring that cost number down. It seems that multiple approaches will be necessary to tackle this big beastie.

One huge core issue right now seems to be trust. The patients could be more agreeable, communicate better so clinic double-booking is not considered necessary, etc. However, many patients basically do not trust that any potential savings will be shared on to them. The bookkeepers at the medical facilities still have to pay those bills to keep the lights on, provide myriad types of medical consumable supplies, and so forth. Some of them now seem to believe the patients are the enemy, and the cause of the problem. Both sides would be correct in different ways. In the absence of trust an adversarial atmosphere has arisen where people choose not to cooperate until they have some assurances of mutual gain.

So, who is going to put down their barrier first, and come to the table to work this out? Or will they both stand their ground and lose out on this historic opportunity to make changes that could leave both the patients and the medical care providers with a better system?

So, what about those insurance companies? I know I depend on health insurance through my employer to help pay for services that keep my daughter alive and in relatively good health, considering her vasculitis condition. I think I am one of the lucky ones so far, and I really have no idea how long that luck will last before the dark side emerges. It causes a lot of stress when I think of all the what ifs. Speaking out feels like looking a gift horse in the mouth, but I have to speak to the larger problem.

This thing is split right down party lines. Some republican folks out there are saying that the democrats led by the Obama Administration are leading us into too much public interest in health care. Read that, too much government control over health care, and too much tax payer money being spent on health care. I ran some numbers, and one $600 billion annual cost estimate turns out to be an approximate per capita tax increase of $2000.00 per year if we all divided it evenly among 300 million people. Wow. I mean really, Wow. It leaves me nearly speechless, but not quite.

One prominent insurance insider seems to be leaning the other way, by stating in a CNN interview that Obama's health plan is actually capitulating too easily to those special interests with a profit motive by removing the parts of the plan that provide alternatives to high cost private insurance and thereby actually help people in need of reform.

This would seem to be the dark side of the agenda promoted by certain powers that be who are ostensibly against health care reform, are actually trying to promote health care reform according to their own wish list. By killing the public plan option, they are actually promoting reform that puts even more money in their pockets.

They are the businessmen, not the medical care providers. There is a big difference between them. They serve the money, and they have lots of money to spend on lobbyists and advertising.

America, wake up. Get involved. Write your personal health care story and sent it to your congressmen. Let them know you need their help. Focus on your facts, and do it now.

Read the different opinions and learn what is going on and how this can and will affect you. The purpose for fear is to motivate you to action, but let your cooler head prevail when you write those letters. Be calm, be insistent, and let your voice be heard.

Wendell Potter's blog | Center for Media and Democracy
"Wendell Potter has served since May 2009 as CMD's Senior Fellow on Health Care. After a 20-year career as a corporate public relations executive, last year he left his job as head of communications for one of the nation's largest health insurers to try his hand at helping socially responsible organizations -- including those advocating for meaningful health care reform -- achieve their goals. "
http://www.prwatch.org/blog/35267


Whistle-blower: Health care industry engaging in PR tactics - CNN.com
"WASHINGTON (CNN) -- Wendell Potter knows a little something about the health care industry's practices and is not afraid of to speak out as the health care reform debate heats up around the country.
Wendell Potter once was a vice president in the public relations department for insurance giant Cigna.

Wendell Potter once was a vice president in the public relations department for insurance giant Cigna.

The former vice president of corporate communications at insurance giant Cigna, who left his post, says the industry is playing "dirty tricks" in an effort to manipulate public opinion.

"Words matter, and the insurance industry is a master at linguistics and using the hot words, buzzwords, buzz expressions that they know will get people upset," he told CNN Wednesday.

Now a senior fellow on health care for the watchdog group Center for Media and Democracy, Potter writes a blog on health care reform. He is focusing on efforts to defeat legislation supporting a government health care plan -- something he supports.

In early July, Potter testified before the Senate Commerce Committee, telling senators that "I know from personal experience that members of Congress and the public have good reason to question the honesty and trustworthiness of the insurance industry."

Potter described how underwriters at his former company would drive small businesses with expensive insurance claims to dump their Cigna policies. Industry executives refer to the practice as "purging," Potter said."
http://www.cnn.com/2009/POLITICS/08/12/health.industry.whistleblower/


Wendell Potter Says 'The Fat Cats Are Winning,' This is A 'Pig of a Bill.' | Crooks and Liars
"Not only is Obama clearly ready to throw the public option overboard, he is embracing the requirement that we all be forced to buy insurance from private insurers. That means your tax dollars and mine will be used to pay subsidies to the big insurers to provide coverage to people who can't afford to buy their policies, because the big insurers charge far more than they should because Wall Street investors demand that they do.

One of the people who undoubtedly talked Obama away from the public option and into supporting this mandate is his new BFF, Aetna CEO Ron Williams. Williams, who made $65 million off of Aetna's policyholders' premiums over the past two years and who was the mastermind behind Aetna's shedding of eight million members a few years ago to meet Wall Street's demands, is the insurance industry's leading champion of requiring us all to buy insurance. And, of course, without a public option, we'll all be forced to buy coverage from Aetna or one of the other private insurers."
http://crooksandliars.com/susie-madrak/wendell-potter-says-fat-cats-are-winn


To learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.

Health Care Reform - Take Action Now!

If you are like me, you are very interested in the current hullabaloo about health care.

To anyone with an interest in Vasculitis, you have to know that the words, "Preexisting Condition," strike fear in the heart of those who worry about getting insurance to help pay for health care.

The issue of health care reform is huge for vasculitis patients and their families. To me it is a great feeling of running out of time. Not enough time to write the letters I feel need to be written.

To learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.

If you are like me, you are screaming mad about all the misinformation being tossed about on the airwaves, and in the streets, by people who don't care enough to discover the facts, or who have been convinced by a minority viewpoint that the facts are contrary to their interests.

It is hard to know what is right these days, unless you really spend some time getting knee deep in this stuff, and read all around an issue. It is not enough to watch one channel, or read one newspaper. You have to work a bit to learn why people are hopping mad, and some even mad as in the Mad Hatter.

I found two media references in particular that I find useful for framing the question, "What is going to happen, and what can I do about it?"

Opinion: Health care reform dead? Think again - Breaking Bioethics- msnbc.com
"Commentary By Arthur Caplan, Ph.D.
msnbc.com contributor
updated 6:40 a.m. MT, Wed., Aug 19, 2009

From all the attention focused on the rambunctious town hall meetings, ranting about “death panels” and repetitive shrieking against government health care on right-wing radio, one might think health reform is pretty much dead in America. Think again.

Health reform is a lock to pass. The only issue is in what form. You need to look past the noise, fear-mongering, misquotes, inconsistent claims, inaccurate assertions and political gamesmanship and pay attention to what is truly at issue as Congress gets down to the business of reform in the fall. "
http://www.msnbc.msn.com/id/32468082/ns/health-health_care/


That gets the message across that you had better put your two cents in, because things are going to happen with or without your participation. Fire up the word processor, the fax machine, and the Email client, and send mail to your representatives and congress persons.

The other very interesting media bit that I came across recently was a roundtable discussion including several highly placed persons from multiple sides of this issue. It is a video about 45 minutes long, but well worth your time if you want to get a handle on this health care debate:

Hulu - CNBC Originals: Meeting of the Minds: The Future of Health Care
Watch the full episode now.


Speaking of the cost of health care, here is some data that might shock most Americans, but maybe does not come as a surprise to those of you with vasculitis:

An Unhealthy America: The Economic Impact of Chronic Disease
"In its groundbreaking study, “An Unhealthy America: The Economic Impact of Chronic Disease,” the Milken Institute details the enormous financial impact of chronic disease on the U.S. economy – not only in treatment costs, but lost worker productivity – today and in the decades ahead. It also describes the huge savings if a serious effort were made to improve Americans’ health."
http://www.chronicdiseaseimpact.com/

Once again, to learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.


Whatever you do or don't do personally, be prepared for changes in the way health care is financed in this country. One way or the other, reform are coming. Act now if you want to be a part of shaping that future.

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.

August Chapter Meeting Tonight

Just to remind those who have not been marking their calendars, we have a chapter meeting tonight.

For details on the location, see the Meetings page of the website:
http://www.nmvasculitis.org/Home/support/meetings

We are adding more social events to the chapter agenda. The idea is to attend some fun thing together, and wear VF logo items so we can be seen out and about to promote awareness, while we do something fun at the same time.

Therefore, in addition to the usually fun social stuff, we will also discuss what we would like to do this coming month. Maybe go to the movies, play Putt-Putt, go bowling, or perhaps take in a museum or have lunch at the Aquarium. It will be up to those in attendance at the chapter meeting to set the social agenda.

If you cannot make it, then post your ideas to the chapter member mailing list at:
http://groups.google.com/group/nmvasculitis

Bring your ideas, and let us know what you would like to do. Then we can vote.

I also have a few free T-shirts to give away while supplies last. So you might get a door prize if you come early. See you tonight at 6PM at the Albuquerque Grill.

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.

Tuesday, August 18, 2009

NMVasculitis Annual Report

It seems kind of formal, considering the casual nature of most of our meetings, but I was asked recently to write something up summarizing who we are, and what we have been up to. I thought I might share that here so the NM members can also get a feel for what is going on with this chapter.

I have had a very busy summer, and I hope you all have been well.

This VF chapter has been in existence for about one year now, since our first meeting at Karla's house was held just a little over a year ago. So, think of this as an annual progress report.

===============================

The Central New Mexico Chapter of the Vasculitis Foundation is known as NMVasculitis for short. We call it that because that is also our web address, http://www.nmvasculitis.org.

Founded in late summer 2008, by Joseph Carpenter and Karla Kollasch, the NM chapter is active with monthly support meetings as they spread awareness and grow the membership. Our regular meeting is held at the Albuquerque Grill, inside the Best Western Rio Grande Inn, 1015 Rio Grande Blvd. NW, Albuquerque, NM 87104.

We meet regularly rain or shine at 6PM on the third Thursday of every month. We also meet by RSVP only at 2PM on the Sunday immediately following the Thursday meeting. That Sunday meeting was added on an as needed basis to accommodate out of town attendees. If I know you are coming to town, I will also agree to meet a vasculitis patient anytime that is convenient.

We see between one and perhaps as many as six people at meetings. Usually I can expect to meet one or two new people every month or two. Most people find us through referrals from the VF, and also from people who find our website and blog. At least one was referred by the Mayo Clinic, who likely found out about us on the VF website local support page. Not everyone comes every month, but we keep holding meetings.

Keeping things simple seems to work best. We meet to share our experiences as patients and caregivers. We often try to combine our knowledge about the different ways to treat vasculitis. Talk about what works, and what does not work. Which doctors we see, and how we like them. The evening tends to resemble an informal social gathering. By the time someone leaves the meeting, I always feel like I have really met them.

The list of local doctors gets updated on our website as a permanent resource, which I update periodically as new information becomes available. This is pure gold for new patients, whose primary concern is getting to see medical professionals with the right training and experience. It is one of the most asked questions I hear, "Who are you seeing for this or that symptom, and how do you like them?"

We have developed a relationship with the nurses at the University of NM Hospital Outpatient Treatment Center, where medications like Cyclophosphamide and Rituximab are administered in the infusion clinic. The nurses have added VF brochures to their Patient Education Center. This amount to just a cabinet with health related literature, but now they also have the Vasculitis Foundation literature to pass out to new and existing patients. It is a simple step in the right direction. I also added a sticker to the brochure with local chapter contact information.

Our chapter has not yet hosted speakers, though I have spoken to a few doctors who have agreed to do this. Ours is a young chapter, and this is a learning process. I would like to grow the membership to a modest level, so that I can assure a decent attendance to make it worth the doctor's time.

Here are three general ideas for how to manage hosting speakers:

The first is simple, "Invite Your Doctor to Dinner." The members would pick up the bill for the doctors meal, and the doctor would either give a short talk, or perhaps just engage in a question and answer session with the attendees.

A second idea is to "host the meetings at the hospital" in order to make things very easy for the doctor. All they need do is come down for some lunch or refreshments, and spend a few minutes with the patients. This idea requires more coordination with hospital management, but it is on the horizon.

A combination approach I read about in a medical journal is referred to as a "Group Clinic" concept where the patients with similar diagnoses are scheduled at the clinic on the same day. Then, instead of just killing time in the waiting room, they adjourn to an adjacent room to participate in a support and awareness session. This also provides the hospital staff an opportunity to conduct shared training to standardize and reinforce approved best patient practices. One benefit mentioned was it gives the doctors a chance to hold a group Q&A which might get some patients to share information more freely than in the one on one clinic visit.

We are also expanding our efforts beyond meetings to include social events around town like going to the movies, or meeting for dinner. One way to accomplish this is by forming mutual partnerships with local businesses. The plan is to arrange for 2 for 1 coupons, and that sort of thing. The discount draws the members, and the business benefits from increased trade, plus they can choose to promote the feel good aspect.

Some local businesses already incorporate community fundraising into their business plan and will donate a portion of the related proceeds to a non-profit organization that makes the effort to get people into their business. For example, I am in preliminary discussions with the manager of California Pizza Kitchen (CPK) to arrange an event this Fall where 20% of all meal proceeds will be donated to the VF when accompanied by an NMVasculitis coupon. CPK restaurants do a fundraiser like this every month, at every location, so this could become an annual or semi-annual event for us, as well as for other chapters. The key to success will be promoting the event as widely as possible, so that will also be the biggest challenge.

There are lots of ideas. The bottom line is we keep meeting every month no matter how many people show up. Persistence is the key to letting the patients and caregivers know we are going to be here to fulfill the mission of awareness, education and support.