My Christmas Spirit has Arrived!

Hello!

Well, I am really feeling the spirit this morning.  I am sitting in our family room, the tree lighted, the fire warming, and my mom and dad drinking coffee on the couch.  They arrived on Monday night and as soon as we picked them up the excitement of Christmas entered my heart and everything fell into place.

Christmas is all about family and I am so glad to finally have mine all together again.

I probably won't post again until after Christmas, but please know you will be in my thoughts and my heart this Christmas.

God bless you all!  Merry Christmas!  Nancy

Cute Teacher Gifts!

Well, it is that time of the year again to figure out what to get for the teachers in our lives.  They deserve our thanks and gratitude, but when there are 8 of them, you need to come up with gifts that won't break the bank.

Here is a great gift idea that we will be giving out this Christmas:

Sand Art Brownies

Layer the following ingredients at the bottom of a quart jar as follows:

1/3 cup cocoa powder

2/3 cup sugar

1/2 cup chocolate chips

2/3 cup brown sugar

1 Cup + 2 tsp flour

1/4 TSP salt

1/4 cup chocolate chips

On the card remind them to add the following ingredients to make their brownies.

Add:

1 TSP vanilla

2/3 cup vegetable oil

3 eggs

Bake at 350 for 30-35 minutes in a 9x9 greased pan. This recipe makes 16 brownies.

Here is the card we attached:

I purchased 1 ounce plastic storage containers and glued Christmas doilies to the top.  They turned out really cute and though they take time to make, I think they will be an appreciated gift.

I also made the recipe and the brownies were great.  Very moist, so if you don't like moist brownies you may want to find a different recipe.

Thank you to all you teachers out there; you are awesome and amazing!  God bless you!

We all can be Santas!

I have to share with you the sadness I have been feeling this Christmas.  In every store I go to there are Christmas trees with childrens' names on them.  Children who will not have a merry Christmas without us.  I want to take every name and get them something wonderful, but, alas, I am not wealthy and do not have the resources to provide each child with what they need.  I walk by those trees and pray that someone will choose that child this Christmas and be their Santa.

Yesterday I had the joy of delivering gifts to the family we adopted for Christmas.  The mother wept and thanked me so genuinely, it touched my heart.  She told me that now they would have a Merry Christmas.  That was better than any gift I will ever receive.

St. Nicholas lives in each of us, right in the center of our heart.  He is as real as you and me.  Don't forget what he was truly all about.  Let's remember who Santa Claus really was:

The true story of Santa Claus begins with Nicholas, who was born during the third century in the village of Patara. At the time the area was Greek and is now on the southern coast of Turkey. His wealthy parents, who raised him to be a devout Christian, died in an epidemic while Nicholas was still young. Obeying Jesus' words to "sell what you own and give the money to the poor," Nicholas used his whole inheritance to assist the needy, the sick, and the suffering. (isn't that exactly what Christ would want us to do to celebrate His Birthday?) He dedicated his life to serving God and was made Bishop of Myra while still a young man. Bishop Nicholas became known throughout the land for his generosity to the those in need, his love for children, and his concern for sailors and ships.


Let's put that CHRIST back in Christmas!  My love to you all!  Nancy

Too Funny not to Share

Happy Two Year Re-Birth Day to Me!

It is hard to believe, but two years ago, right now, I was in surgery receiving the most amazing gift of all, the gift of new life and lungs.  God bless my donor!

What an amazing two years this has been.  I have so much to be thankful for!  Thank you all for your continued love and prayers!

All my love!  Nancy

A Response to the Arizona Crisis

I wanted to share this response with you from a comment made to my "This is Awful" post.  I really appreciate the research Julie has done on this topic.  She is a mother of a child with CF, so I truly value her feedback.


It saddens me that the transplant patients in AZ who happen to be so low
income that they qualify for Medicaid will no longer have access to
transplants. Although I want to find out the background of why this
happened because I think it is important to research what caused the
decision in the first place so that perhaps other patients at or below the
poverty level do not have to suffer the same consequences. There has been
much speculation of fault in this instance, but for me it is not so much
about fault, but about what preceded the decision that needs more scrutiny.

After extensive research I found that much of this rationing is directly
related to what is coming with the new federal health care reform law. AZ
was the first to catch public scrutiny but it won’t be the last.

AZ is currently facing the worst debt crisis in that states history. This
decision in AZ was not done lightly, and since states cannot print their own
money, they are going to have to do something to save their state from being
bankrupt and issuing IOU’s like other states already bankrupt. There were
reviews, legislative voting & sessions, meetings, public input,
recommendations from UNOS & transplant surgeons etc. I have summarized much
of it, but all of that documentation can be found here:

spx

AZ tried to eliminate coverage for Gastric Bypass Surgery but Federal
requirements prohibit the elimination of this benefit. (I do find it
strange that the federal requirements prohibit weight loss surgery from
being eliminated but say nothing about transplants.) The benefit fact sheet
from AZ is hereà

hanges_factsheet.pdf

None of the changes affected children’s benefits whatsoever. Also, members
with incomes at or below 100 % of the federal poverty level (FPL) who are
also Medicare eligible will continue to receive Medicare covered services
that are no longer covered by AZ. For members with incomes greater than
100% FPL who are also Medicare eligible will not receive the Medicare
covered services that are no longer covered by AZ.

Lung transplants are still covered for patients in AZ who are 21 and
younger. The details of the new law on transplants in AZ (entire document
here:

ary10_6_10.pdf )

Summary of transplant coverage in AZ follows below:

Heart Transplants- Covered except for non-ischemic cardio myopathies

Heart & Lung Transplants- Covered for members 21 and younger

Lung (single and double) - Covered for members 21 and younger

Liver Transplant- Covered except for members with a diagnosis of Hepatitis C

Kidney (cadaveric and live donor)- Covered

Simultaneous Pancreas/Kidney (SPK)- Covered

Pancreas after Kidney (PAK)- Covered for members under 21

Visceral Transplantation (includes intestine alone, or intestine +pancreas,
+liver)- Covered for members under 21

Pancreas Only- Covered for members under 21

Stem Cell Transplants- Covered in all instances except for Allogeneic
Unrelated for members over 21

Cornea- covered

Bone- covered

I did find out that transplant eligibility remains for patients currently on
the transplant list, so people we are on the transplant list are not left
high and dry. It is the new law and you can find it on page 25 here:


I have friends in AZ and specifically one who recently lost her daughter
from cf who was a tender age of 10. I know AZ is suffering the worst
economic decline in that state’s history and they have been trying since
before 2009 to figure out where they will be able to keep themselves from
going bankrupt. Since the new health reform law is going to force the state
to dramatically expand the number of patients on Medicaid in AZ, they
started looking there first.

Medicaid is a program for very low income individuals with no age
requirement that each state funds a large portion of with some help from the
federal government. The state is allowed to make some rules, but some come
from the federal government cms.gov. AZ found they could save money by
reducing or waiving the requirement to provide non-emergency medical
transportation for certain populations. In other words they wanted to no
longer provide coverage for non-emergency transportation in ambulances.
Since the federal government mandates this particular coverage, AZ wrote to
cms.gov to get their permission. It would have saved AZ $4,722,041 if this
would have been done. The letter to the feds was sent just this past summer
in August 2010 and all the info I just stated can be seen in the actual
letter here à

10.pdf

As of today there has been no response from the Center for Medicare &
Medicaid service.

Good Job Portville Prosthetic Panthers!

What a wonderful weekend for Hannah's Lego League Team the Portville Prosthetic Panthers.

They had a great time in Rochester at the Finger Lakes Lego League Tournament.

There were 35 teams competing, so it was a long and busy day.

Meeting with their coach, Bernice Pierson

Some great quotes!

Before the Awards Ceremony the kids got to have a dance party.  They had a blast!!

Portville was one of ten schools to win a trophy.  Theirs was for perseverance.  These kids overcame a lot; their computer that had all of the robot's programs on it crashed, so they had to start from scratch and re-program it.  They also missed two days of school before the competition because their school was closed due to flooding.  They didn't let these things stop them and they were honored for that!

Great job Portville Panthers!

This is awful!

I wanted to make you all aware of the current situation in Arizona where the state's Medicaid program has cut financing for transplant patients.  I am HORRIFIED to think a that Arizona would cut transplants before other unnecessary budgetary items.  I am really angered by this.

This article was in the New York Times:

---

December 2, 2010

Arizona Cuts Financing for Transplant Patients

By MARC LACEY

PHOENIX — Even physicians with decades of experience telling patients that their lives are nearing an end are having difficulty discussing a potentially fatal condition that has arisen in Arizona: Death by budget cut.

Effective at the beginning of October, Arizona stopped financing certain transplant operations under the state’s version of Medicaid. Many doctors say the decision amounts to a death sentence for some low-income patients, who have little chance of survival without transplants and lack the hundreds of thousands of dollars needed to pay for them.

“The most difficult discussions are those that involve patients who had been on the donor list for a year or more and now we have to tell them they’re not on the list anymore,” said Dr. Rainer Gruessner, a transplant specialist at the University of Arizona College of Medicine. “The frustration is tremendous. It’s more than frustration.”

Organ transplants are already the subject of a web of regulations, which do not guarantee that everyone in need of a life-saving organ will receive one. But Arizona’s transplant specialists are alarmed that patients who were in line to receive transplants one day were, after the state’s budget cuts to its Medicaid program, ruled ineligible the next — unless they raised the money themselves.

Francisco Felix, 32, a father of four who has hepatitis C and is in need of a liver, received news a few weeks ago that a family friend was dying and wanted to donate her liver to him. But the budget cuts meant he no longer qualified for a state-financed transplant.

He was prepared anyway at Banner Good Samaritan Medical Center as his relatives scrambled to raise the needed $200,000. When the money did not come through, the liver went to someone else on the transplant list.

“I know times are tight and cuts are needed, but you can’t cut human lives,” said Mr. Felix’s wife, Flor. “You just can’t do that.”

Such high drama is unfolding regularly here as more and more of the roughly 100 people affected by the cuts are becoming known: the father of six who died before receiving abone marrow transplant, the plumber in need of a new heart and the high school basketball coach who struggles to breathe during games at high altitudes as she awaits a lung transplant.

“I appreciate the need for budget restraints,” said Dr. Andrew M. Yeager, a University of Arizona professor who is director of the Blood and Marrow Transplantation Program at the Arizona Cancer Center. “But when one looks at a potentially lifesaving treatment, admittedly expensive, and we have data to support efficacy, cuts like this are shortsighted and sad.”

State Medicaid officials said they recommended discontinuing some transplants only after assessing the success rates for previous patients. Among the discontinued procedures are lung transplants, liver transplants for hepatitis C patients and some bone marrow and pancreas transplants, which altogether would save the state about $4.5 million a year.

“As an agency, we understand there have been difficult cuts and there will have to be more difficult cuts looking forward,” said Jennifer Carusetta, chief legislative liaison at the state Medicaid agency.

The issue has led to a fierce political battle, with Democrats condemning the reductions as “Brewercare,” after Gov. Jan Brewer.

“We made it very clear at the time of the vote that this was a death sentence,” said State Senator Leah Landrum Taylor, a Democrat. “This is not a luxury item. We’re not talking about cosmetic surgery.”

The Republican governor has in turn blamed “Obamacare,” meaning the federal health care overhaul, for the transplant cuts even though the Arizona vote came in March, before President Obama signed that bill into law.

But a top Republican, State Representative John Kavanagh, has already pledged to reconsider at least some of the state’s cuts for transplants when the Legislature reconvenes in January. Mr. Kavanagh, chairman of the Appropriations Committee, said he does not believe lawmakers had the full picture of the effect of the cuts on patients when they voted.

“It’s difficult to be linked to a situation where people’s lives are jeopardized and turned upside down,” he said in an interview. “Thankfully no one has died as a result of this, and I believe we have time to rectify this.”

Across the country, states have restricted benefits to their Medicaid programs, according to a 50-state survey published in September by the Kaiser Commission on Medicaid and the Uninsured. But none have gone as far as Arizona in eliminating some transplants, which are considered optional services under federal law.

Before the Legislature acted, Arizona’s Medicaid agency had provided an analysis to lawmakers of the transplants that were cut, which many health experts now say was seriously flawed. For instance, the state said that 13 of 14 patients under the state’s health system who received bone marrow transplants from nonrelatives over a two-year period died within six months.

But outside specialists said the success rates were considerably higher, particularly for leukemia patients in their first remission.

“Something needs to be done,” said Dr. Emmanuel Katsanis, a bone marrow transplant expert at the University of Arizona. “There’s no doubt that people aren’t going to make it because of this decision. What do you tell someone? You need a transplant but you have to raise the money?”

Just before the Oct. 1 deadline, Mark Price, a father of six who was fighting leukemia, learned he needed a bone marrow transplant. But his doctor, Jeffrey R. Schriber, found donor matches for his transplant the very day the new rules went into effect, and Mr. Price no longer qualified for coverage by the Arizona Health Care Cost Containment System, the formal name for the state’s Medicaid program.

What happened next was at once inspirational and heart-rending.

Out of the blue, an anonymous financial donor quickly stepped forward and agreed to cover the hundreds of thousands of dollars needed for Mr. Price’s surgery. But Mr. Price died last weekend, after his cancer returned before the operation could be done. He was buried on Thursday, next to his grandfather.

“It’s not correct to say that he died as a result of the cuts,” said Dr. Schriber, who is active in lobbying for the financing to be restored. “Did it prey on his mind? Did it make his last days more difficult? No doubt.”

Elsewhere, the fund-raising is already under way.

Mr. Felix and others are now trying to raise enough for new organs through NTAF, a nonprofit organization based in Pennsylvania formerly known as the National Transplant Assistance Fund that helps transplant patients pay for their medical costs. National coverage of their plight has already led to more than $100,000 in donations for some of the patients affected by the budget cuts. The Felix family is also planning a yard sale this weekend so he does not lose the chance to get another liver.

There has been a flurry of lobbying to persuade the state to reverse the decision. Dr. Gruessner said he and others met with state health officials recently to propose other cuts associated with transplants, like eliminating tests typically conducted before surgery.

If the Legislature does decide to reconsider the cuts, one of the affected people, a plumber and father of three named Randy Shepherd, 36, who has an ailing heart and needs a transplant, plans to attend the debate.

“I’m trying not to take it personally,” he said of being cut out of the program. “None of the politicians had heard of me when they made their decision. They didn’t say, ‘Let’s kill this guy.’ ”

SO Proud!

I am so proud of my dad!  He received a much deserved "Hats Off" award from the Jackson Hole Conservation Alliance:

"For his dedication to and leadership in the community efforts to ensure wildlife crossings are incorporated into future highway expansion projects in Jackson Hole"

Being the humble man that he is, he didn't feel he deserved it, but I DO!!  I don't think there is anyone who is more passionate about the environment and preserving it for future generations than he is.  Daddy, I am so very proud of you!  Well done!


We are off to Rochester today for the Lego League competition.  Please pray we don't have problems with the weather.


May God bless you all!  Nancy

Happy Belated Thanksgiving!

I hope you all enjoyed a wonderful Thanksgiving with family and friends.  We continue to have so much to be thankful for.  The bronch results came back negative for Cepacia, so it appears that infection has been resolved. I have been under the weather since we returned from Pittsburgh, however, hence the lack of posts.

Feeling the way I have been for the last few days has reminded me of how precious my health truly is.  It is not something to be taken for granted or abused.  I have to set limits.  I made a very difficult decision to cancel a presentation last week because I just didn't feel up to going.  My brain tried really hard to talk my body into it, but my body just wanted to go back to bed.  Not going was the right thing to do.  We all have to recognize our limits and sometimes make difficult decisions to protect our health.

I have just lazed around the last few days, and it is really helping.  I tend to want to conquer the world, but I can only do that with a healthy body.

God bless you all!  Nancy

No Results Yet

Hello!  I wish I could tell you I had some results from my bronch, but I don't.  I promise to let you know when I do.  I recovered pretty well, though I slept all day on Friday.

Saturday was an exciting day.  Hannah got involved with Lego League this year and they had their regional tournament on Saturday.  Now if you are anything like me, I hear Lego and think the kids will be playing, well, that is far from true.  According to the FLL website:

Elementary and middle-school students get to:

  Design, build and program robots using LEGO MINDSTORMS® technology
  Apply real-world math and science concepts
  Research challenges facing today’s scientists
  Learn critical thinking, team-building and presentation skills
  Participate in tournaments and celebrations

This video illustrates what the students have to do with the robots they design.

Three teams went to the tournament from Portville and there were 11 teams total.  The top 4 teams would get to progress to the state level at a tournament in Rochester next Sunday.  Hannah's team's robot did amazingly well, bringing her team into 2nd place.  They were the only team from Portville who qualified to go to the state round.  We were all so proud of them!

This is a busy week, lots to do to prepare for Thanksgiving.  I am so thankful for all of you who continue to pray for and support me.  May God greatly bless you!  Nancy

An Update on Wendy

Hi!  I was able to speak with Wendy's husband and mother and though they had a scare, she is doing much better.  She is out of ICU now, but she needs some special prayers.  Her lower lungs are not inflating the way they should be, so she needs us to pray that God will help to fill them with air.  Keep those prayers coming, she is so grateful, as am I!

Asking for Prayers

I have a couple of prayer requests today.

First, please continue to pray for my friend Wendy, I haven't heard anything from her or her family which really concerns me.  Please pray for her recovery and return to health.

Second, we will be headed to Pittsburgh on Wednesday for a follow-up to my infection.  Please pray that the bronch I have on Thursday will show that I have beat the Cepacia infection!  I really appreciate it!

I hope all of you are well!  All my love!  Nancy

I'm Back!

Sorry about my extended vacation from blogging, I will blame it on my mother whom I wanted to spend every minute with and thus neglected everything else (including my Bible Study, I am 2 weeks behind, shame on my mommy!)  We had a wonderful visit and she got to experience a lot, Hannah's friend and family birthday parties; an Irish Dance competition; and she came with me to Jamestown Community College for a presentation, so she got to witness that.  Luckily she will be back in less than 5 weeks for Christmas, so bringing her to the airport yesterday didn't hurt as much as it usually does.

So, what have you missed?

Hannah's Family Party, November 2

An Irish Dance Competition near Syracuse, NY

Too bad the judge barely looked up during judging, I am not sure how she chose the places for the girls.

Finally, yesterday, after I dropped my mom off at the airport, I got to visit a dear friend whom I haven't seen in years, Jeanne.  For any of you who have a copy of my Chronic Illness Book, this is the woman who it is dedicated to.  She was the adult CF Coordinator in Buffalo for many years and was truly a Godsend for me.  It was so wonderful to hug her again and to catch up.  I can't wait for our next visit!

On a not so good note, I just learned this morning that my friend Wendy is back in the ICU.  She had a bronchoscopy on Friday that showed rejection in her new lungs.  Please keep her in your prayers!

With all my love,  Nancy

A FUN Halloween Weekend!

Wow, what a crazy weekend this has been.  We celebrated Hannah's Birthday with her girlfriends and, of course, did the Halloween thing.  Tomorrow is her actual Birthday, so I am re-grouping to prepare for that.

Here are some pictures of our weekend.

Thursday Night

Our Pumpkins:

Mine, Hannah's, Scott's

Friday Night

On Friday night there was a party at Hannah's school.  Don't the girls look spooky!

Saturday Night

The Birthday party snacks consisted of eye balls, bones and blood, brains, mouths, fingers, purple people eater punch, and a pumpkin cheese ball.

We started the evening with flashlight tag.

then a snack break

and on to Minute to Win It

The cake: I couldn't find candy pumpkins anywhere, so made ice cream pumpkins instead, hence the melting.

Sunday Night

Our costumes:

 House, a duck, spiderwoman, a butterfly, Victoria (from Twilight) and Cruella Deville

 trick or treating fun!

Check out all our loot!

I hope you all had a wonderful Halloween!