You've Been Given the Gift of Life, Give it Back!

Welcome friends and family!

Thank you for visiting my blog. It documents my amazing journey from pre to post double lung transplant. I am a 37 year old mother and wife with Cystic Fibrosis who has been more greatly blessed than I could ever imagine possible!

It has been a bumpy ride, but God has given me strength, love, friendship, and, FINALLY, health. My prayers have been answered, my miracle was granted, and I want to share the joy of my new life with you.

If you are a first time visitor, please take a moment to watch The Miracle of Transplantation video below. To me, pictures speak a thousand words.

My entries begin in April of 2008 and my double lung transplant was December 10. Scroll down to my blog archive and you can read from the beginning or jump around. If you are looking for a specific topic, you can use the search engine.

Please feel free to contact me with questions or feedback, I would love to hear from you!

I hope I can help you to experience the love God has for each and every one of us!

May God Bless You with Miracles in Your Life! Nancy


Thursday, January 28, 2010

Some important things to know...

I have been attending a weekly group called "Conversations about Healthcare" at my church. Last night we discussed health care proxy's, living wills, organ donation, and nursing home care. I learned some interesting things, but a major issue was brought up that I wanted to make you aware of.

According to the presenters, in New York State, and probably elsewhere, even if you have signed up to be an organ donor on your driver's license, if your family says no, the hospital will NOT donate your organs. Wow, I had no idea that family could over-ride your personal wishes. This highlights the need for you to discuss with your family your end of life wishes. I don't care how old or young you are, this is extremely important.

You can fill out an organ donation registry form at the following website: NYS Donate Life Organ and Tissue Donor Registry Enrollment Form .

There is also a place on your Health Care Proxy form to indicate your organ donation wishes. (see website below)

Important documents to have:

I am pasting below a section from my book, An Insider's Guide to Managing Your Chronic of Terminal Illness, that highlights the important documents each of you should have. Where applicable, I have also put a link to a site where you can access these forms.

Advance Directives

It is imperative for you to complete advance directives before hospitalization. Each state has preferences for the type of advance directives their hospitals use, so be sure to consult with the hospital about what is recommended. There are several forms of advance directives including a power of attorney, living will, health care proxy, or do not resuscitate orders (DNR). These documents let your physicians know who is responsible for making decisions for you if you are unable. Advance directive forms can be obtained from the hospital social worker or patient advocate.

A Power of Attorney

You use a power of attorney to appoint an agent to make health care decisions for you if you are unable, regardless of the terminality of your condition. Your agent may need to authorize admission to, or discharge from, the hospital and/or consent for treatments such as surgery.

A Living Will

A living will outlines your decisions regarding life-sustaining measures and only takes effect if your medical condition becomes terminal with no sign of recovery.

A Health Care Proxy

A health care proxy is someone you have appointed to make sure your end of life medical wishes are upheld. Unlike the power of attorney, a health care proxy is only responsible for end of life decisions. Make sure your appointed agent is aware of your wishes for life support, organ donation, and other important medical issues.

A Do Not Resuscitate Order

Finally, a DNR is a written document placed in your medical chart instructing hospital personnel to hold off on CPR and other life-sustaining measures if your heart or breathing stops. This is something you need to discuss with your doctor.

Don't wait to make decisions about your care. Take the time to discuss these issues with your family and to complete the appropriate steps to ensure your wishes will be carried out.

Monday, January 25, 2010

More about the Medicare Donut Hole

I found this article that better explains the Donut Hole. I have to tell you, I am quite disturbed by this, not just for me, but for every person who is on Social Security. These are individuals who worked hard during their lifetime, but could not continue to work any longer. In my case, because of the size of my husband's employer, I have no choice but to have Medicare, I am not eligible for private insurance. So, for those of you who are healthy now, this is what you have to look forward to when you retire; the time in your life when you will need health care coverage more than you ever have before. I can only speak for myself, but I think this is a true injustice to our elderly and disabled! I would love to hear your thoughts, please don't worry if they are different than mine, I really would like to hear all sides.

Medicare Part D: Understanding the Medicare Part D Donut Hole

Learn About the Medicare Part D Coverage Gap
By , Guide
Updated December 25, 2009

Hitting the Donut Hole

The donut hole, or coverage gap, is one of the most controversial parts of the Medicare Part D prescription drug benefit and of concern to many people who have joined a Part D drug plan.

Although all prescription drug plans must explain the coverage gap in their literature and advertising, the donut hole comes as a shock to many enrollees when they go abruptly from making copayments for their drugs to paying 100% of the cost.

In addition, you may be confused about the $2,830 limit for 2010 in your initial coverage period, thinking it is the only amount of money you would have to pay out-of-pocket. In fact, the amount includes the total cost of your drugs, meaning what you paid plus what the prescription drug plan paid.

How the Donut Hole Works in 2010

This is the standard Part D drug prescription plan for 2010 required by Medicare.
If you join a Medicare prescription drug plan, you may have to pay up to the first $310 of your drug costs. This is known as the deductible.

During the initial coverage phase, your drug plan pays 75% of the covered prescription drug costs after your deductible is met, and you pay 25% until the total drug costs (including your deductible) reach $2,830.

Once you reach $2,830 in total drug costs, you will be in the donut hole and you must pay the full cost of prescription drugs until your total out-of-pocket cost reaches $4,550. This annual out-of-pocket spending amount includes your yearly deductible and copay amounts.

When you spend more than $4,550 out-of-pocket, the coverage gap ends and your drug plan pays most of the costs of your covered drugs for the remainder of the year. You will be responsible for a copay of $2.40 for each generic drug and $6.00 for other drugs (or 5%, whichever is higher, so, for me, a $2000 drug will cost $100 even after I have paid out the $4550). This is known as catastrophic coverage.

The expenses outlined above only include the cost of prescription medications. It does not include the monthly premium that you pay to the prescription drug plan.

It is important to understand that your Part D prescription drug plan may differ from the standard Medicare plan only if the plan offers you a better benefit. For example, your plan can eliminate or lower the amount of the deductible. And, your plan can pay for generic or brand name medications in the coverage gap.

Coverage Gap / Donut Hole

This weekend I learned the hard way what a Donut Hole (no, not Timbits, but medical insurance) is. I went to refill a prescription and was told that I have entered a donut hole in my coverage and owed $1200 for my prescription. I about fainted!

I have heard people discuss the Medicare donut hole, but really didn't understand what it meant. For those of you who are ignorant like me, a donut hole is when your insurance has paid out a certain amount of money and suddenly they stop covering you for a period of time.

In my case, since January 1 my insurance has already paid out over $4330, so suddenly the burden of coverage switches over to me. I am now in a coverage gap stage until my out of pocket costs reach $4550, then my coverage will kick back in. In my case, that $4550 will be paid out before the end of February (many of my drugs cost $2000+ per month). So, to give you the big picture, I will have already spent 1/3 of my total yearly social security income for 2010 by the end of February, leaving me with 2/3 to cover every other expense (medical, grocery, utilities, transportation, etc.) for the rest of the year.

All I can say is, thank God so many people donated money to help us with our medical expenses. I still have an account set up to cover things like this, but what about someone who doesn't have help? Many of our elderly are covered by these kinds of plans, how can they afford to continue paying for their medications during this medi-gap period? 1/3 of your yearly income for prescriptions is a lot of money when you are on a fixed income. I know for a fact, many of these people end up going without medications they need because they cannot afford them. Why are we penalizing our elderly and disabled in this way?

Health care is so complex and as Scott reminded me last night, it has become my full time job. I have to say, I often feel like quitting! I just hope I can help educate others about things like this donut hole as I learn about them, so they won't have to face medical issues blindly.

I hope you all have a wonderful week! Nancy

Tuesday, January 19, 2010


Sorry if you all thought I dropped off the face of the planet. I have just been keeping so busy, I have a hard time finding time to post. I am not complaining about this, it is wonderful! After the hours, days, and weeks I spent only being able to post, I am thrilled to be engaged in other activities that are keeping me away from this computer.

Things continue to go so well, I am smiling more and more every day. My life is so full right now.

I thought I would share some recent pictures with you:

Our animals give us so much love!

New Year's Eve: Lydia and Kirsten with Oreo
We took Hannah and her friend Taylor skating this weekend.

Be sure to check out my cooking blog, there are lots of yummy new recipes posted there

P.S. Some of you have noticed the solicitous comments I have been getting. Those are what we call blog spam. I am trying to change my security settings to get rid of that, but until I am able, just ignore it as a nuisance! Thanks!

Monday, January 11, 2010

How Great is Our God!

I can't remember if I have mentioned this before, but Scott and I were asked to record a song for a benefit CD that will be sold to help a young woman with CF raise money for a double lung transplant. Though we were both quite nervous about this prospect, we agreed to try. We recorded How Great is Our God by Chris Tomlin, you are currently hearing it on my playlist. It is not professional, but was done from the heart, my voice has deteriorated quite a bit in the last few years and Scott is only a beginning guitar player, but I think all things considered, it sounds okay.

Hannah is also featured, you can hear her and Grace Emley (her friend) singing "Sing with me..." and she also sings "Name above all names.."

It was a lot of work and took a lot of time, but I am so glad we will be able to make a contribution to the CD. Once it is available for purchase, I will let you all know.

I have been feeling quite under the weather the last few days, some kind of stomach virus, hopefully it will go away soon!

All my love! Nancy

Tuesday, January 5, 2010

Sacks for CF Scholarship

When I was in college I received a scholarship through Solvay, so I wanted to pass this information on. If you are in college or are preparing to go to college, you should definitely consider applying for this scholarship!

The Boomer Esiason Foundation has done so many wonderful things for the CF community. They provided money for me while I was living in Pittsburgh awaiting transplant. I am so grateful for such wonderful organizations who truly care about people with CF!

Scholarships Program for Individuals with Cystic Fibrosis (CF)

Now in its fifth year and with a new supporter, "Sacks for CF" means money in the bank for college students who have cystic fibrosis.

For every sack recorded during NFL Monday Night Football games, Solvay Pharmaceuticals, Inc. will donate $1000 to the Boomer Esiason Foundation Scholarship Program.

Solvay has supported the CF community for more than 20 years by providing nutritional, educational, and financial resources to those touched by CF through its SolvayCARES program (learn more by visiting

Through the BEF/SolvayCARES partnership, "Sacks for CF" funds will be awarded to 30 college students, based on their academic achievements and adherence to daily CF therapy.

"The missions of the Boomer Esiason Foundation and Solvay Pharmaceuticals, Inc. have always been closely aligned. Both organizations have a history of supporting the day-to-day needs of those living with cystic fibrosis while not losing sight of the goal to find a cure. Through our SolvayCARES partnership - which includes Solvay's support of our Sacks for CF Scholarship Program - we are working together to make a difference in patients' lives." Boomer Esiason


Applications and all documentation must be received by Friday, January 15, 2010.
The names of scholarship winners will be announced on Super Bowl Sunday, February 7, 2010.

· Applications should be mailed to the following address:

Boomer Esiason Foundation
c/o Jerry Cahill
483 10th Avenue, Suite 300
New York, NY 10018

· For more information, contact:

· Jerry Cahill at 646-292-7937

· E-mail:

· Visit:

The Sacks for CF Scholarship Program is made possible through the financial support of Solvay Pharmaceuticals, Inc.

Deadline: Applications and all documentation must be received by Jerry Cahill by Friday, January 15, 2010.

Monday, January 4, 2010

What a wonderful weekend!

We had a terrific weekend! Friday we drove to Buffalo to see the Sabres play the Hurricanes at the HSBC arena. When Scott was a child, his family often celebrated the New Year at a hockey game, so we were re-living his childhood memories. We spent the night at the same hotel his family always did, the Adams Mark, and Hannah enjoyed some time in their lovely indoor pool. We were invited to the game by a dear friend, Michael, who often invites Scott to join him in his company's box. Hannah has never seen a game in the box, so it was a real treat for her. I think she ate more while we were in the box than she had during the whole holiday season!

On Saturday we went to see Avatar in 3-D. I wasn't sure what to expect, but we were blown away. What an amazing film on many different levels. The effects were incredible and you truly were sucked right in. It was hard to tell the difference between computer animation and real life. The story was so poignant and has been repeated many times throughout history. The human desire for riches outweighing the moral need to protect the environment and the native people. If you haven't seen it, I encourage you to go.

Hannah's Avatar

So, today is back to reality. It is hard to believe the holidays have passed, my parents have come and gone, Hannah is back to school, and life starts up again. What an amazing holiday this was for all of us. I am really looking forward to what the new year will have to offer!

Friday, January 1, 2010

Happy New Year!

Wow, can you believe it is 2010 already! What an amazing year 2009 was for our family, I can only imagine what 2010 will bring.

Last year I was starting a new life. I would learn to breath without oxygen, to be alone again, to care for myself and my family, to re-learn independence and confidence, to realize how it feels to live healthy, and finally to appreciate the gift of every new day.

This year I start out with a full bag of lessons and the desire to live each day to the fullest, praising God for all He has done for me and giving back to all those whose prayers made this possible.

Thank you for your prayers and support in 2009, may your 2010 be filled with love, joy, peace, and many blessings! All my love!


The Miracle of Transplantation

Pause the music player before watching.