Show Your Hope!

Many of you have probably never given blood donation much thought….
And if you haven’t….let me help put the importance of it into perspective for you:

If that isn’t enough….let me give you 56 reasons to get out there and give blood:

1. 4.5 million Americans would die each year without life saving blood transfusions.
   
2. Approximately 32,000 pints of blood are used each day in the United States.
   
3. Every three seconds someone needs blood.
   
4. One out of every 10 people entering a hospital needs blood.
   
5. Just one pint of donated blood can help save as many as three people’s lives.
   
6. The average adult has 10 pints of blood in his or her body.
   
7. One unit of blood is roughly the equivalent of one pint.
   
8. Blood makes up about 7% of your body’s weight.
   
9. A newborn baby has about one cup of blood in his or her body.
   
10. The average red blood cell transfusion is 3.4 pints.
    
11. Blood fights against infection and help heal wounds, keeping you healthy.
    
12. There are four main blood types: A, B, AB, and O.  AB is the universal recipient and O negative is the universal donor.
    
13. Blood centers often run short of type O and B blood.
    
14. Shortages of all types of blood occur during the summer and winter holidays.
    
15. If all blood donors gave 2 to 4 times a year, it would help prevent blood shortages.
    
16. If you began donating blood at age 17 and donated every 56 days until you reached 76, you would have donated 48 gallons of blood.
    
17. About three gallons of blood supports the entire nation’s blood needs for one minute.
    
18. Blood donation takes four steps:  medical history, quick physical, donation, and snacks.
    
19. The actual blood donation usually takes less than 10 minutes.  The entire process, from when you sign in to the time you leave, takes about 45 minutes.
    
20. Giving blood will not decrease your strength.
    
21. You cannot get AIDS or any other infectious disease by donating blood.
    
22. Fourteen tests, 11 of which are for infectious diseases, are performed on each unit of donated blood.
    
23. Any company, community organization, place of worship or individual may contact their local community blood center to host a blood drive.
    
24. People donate blood out of a sense of duty and community spirit, not to make money.  They are not paid for their donation.
    
25. Much of today’s medical care depends on a steady supply of blood from healthy donors.
    
26. One unit of blood can be separated into several components (red blood cells, white blood cells, plasma, platelets, and cryoprecipitate).
    
27. Red blood cells carry oxygen to the body’s organs and tissue.
    
28. There are about one billion red blood cells in two to three drops of blood.
    
29. Red blood cells live about 120 days in the circulatory system.
    
30. Platelets help blood to clot and give those with leukemia and other cancers a chance to live.
    
31. Apheresis is a special kind of blood donation that allows a donor to give specific blood components, such as platelets.
    
32. Donated red blood cells must be used within 42 days of collection.
    
33. Donated platelets must be used within five days of collection.
    
34. Plasma can be frozen and used for up to a year.
    
35. Plasma is a pale yellow mixture of water, proteins, and salts.
    
36. Plasma, which is 90% water, constitutes 55% of blood volume.
    
37. Healthy bone marrow makes a constant supply of red cells, plasma and platelets.
    
38. People who have been in car accidents and suffered massive blood loss can need transfusions of 50 pints or more of red blood cells.
    
39. The average bone marrow transplant requires 120 units of platelets and about 20 units of red blood cells.  Patients undergoing bone marrow transplants need platelets donations from about 120 people and red blood cells from about 20 people.
    
40. Severe burn victims can need 20 units of platelets during their treatment.
    
41. Children being treated for cancer, premature infants, and children having heart surgery need blood and platelets from donors of all types.
    
42. Anemic patients need blood transfusions to increase their iron levels.
    
43. Cancer, transplant and trauma patients and patients undergoing open-heart surgery require platelet transfusions to survive.
    
44. Sickle cell disease is an inherited disease that affect more than 80,000 people in the United States, 98% of whom are of African descent.  Some patients with complications from severe sickle cell disease receive blood transfusions every month – up to 4 pints at a time.
    
45. In the days following the September 11th attacks, a half a million people donated blood.
    
46. Females receive 53% of blood transfused; males receive 47%.
    
47. 94% of all blood donors are registered voters.
    
48. 60% of the US population is eligible to donate – only 5% do on a yearly basis.
    
49. 17% of non-donors cite “never thought about it” as the main reason for not giving, while 15% say they’re “too busy”.  The #1 reason donors say they give is because they “want to help others”.
    
50. After donating blood, you replace these red blood cells within 3 to 4 weeks.  It takes eight weeks to restore the iron lost after donating.
    
51. Granulocytes, a type of white blood cell, roll along blood vessel walls in search of bacteria to eat.
    
52. White cells are the body’s primary defense against infection.
    
53. There is no substitute for human blood.
    
54. It’s about Life.
    
55. Since a pint is a pound, you lose a pound every time you donate blood.
    
56. Anyone who is in good health, is at least 16 years old, and weighs at least 110 pounds may donate blood every 56 days.
    You see…every single person in this blog has either benefited from or donated blood.  Each person in this blog is either FIGHTING for or GIVING life.
    
    Just remember, life is precious – not promised.  Be the reason that someone gets to live another day….it is a blessing like no other!
    
    And to all our donors (past and present…and future)….THANK YOU for giving our family the amazing gift of life, love, happiness, joy.
    Truly, there are no words to truly express our gratitude for this priceless gift!
    
    I’ll start the way I began…..
    
    DONATE BLOOD….GIVE THE GIFT OF LIFE….
    
    It’s fun and rewarding to be a part of something that is priceless….
    
    
    PLEASE SHARE THIS BLOG AND PASS IT ON!!!!!!To view full blood drive details, click HERE
57. Love and Light,
    Stefani*56 Facts provided by BNL Blood Drive Website***All individuals featured here are either blood donors or patients who have Primary Immunodeficiency Disease. 
    Those who are patients benefit from infusions of blood product pooled from thousands of donors and count on blood donors for their life saving infusions.
    These individuals (including my kids!) are some of the bravest warriors in this world! 

On a cool and dreary Wednesday night in a hotel conference room, HOPE was in there air.  Old friends embraced and new friendships began. A tiny but radiant woman spoke up from behind the podium and the room fell silent.  Marcia Boyle, founder and CEO of the Immune Deficiency Foundation welcomed us to Capitol Hill.

Over the next few hours, we sat a captive audience as we heard presentations by the Vice President of the PPTA,

Hart Health Strategies,

and staff from the IDF.

Our mission was clear…we were there to MAKE A DIFFERENCE….to DO SOMETHING.

As soon as the presentations were done, we all hurried to our rooms to review our materials and head to bed. It would be an early start to our day tomorrow and there wasn’t a moment to waste.

Thursday morning started on a frenzied note as my alarm did not go off and the shower had no water pressure amongst other things….a comedy of errors for sure.

Downstairs, the conference room was abuzz with eager and nervous men and woman…the time was almost upon us.

Congressman Van Hollen was recognized for his dedication to our cause….

and said a few words of encouragement.

Congresswoman Matsui was unable to attend, but her aide accepted her plaque on her behalf.

and Sen. Brady were waiting in the wings and were introduced, thanked and applauded for their efforts in being our champions on this legislation.

And finished off our morning by commissioning us to go and make a difference.

  After a few encouraging words from the staff at IDF,

it was time to gather our things and head to the Hill.

As a sign of our solidarity (and a way to capture the awesomeness of the moment), we took a few moments on the steps of the Capitol to have a group picture.

With great anticipation and a lot of ‘good luck’ wishes and hugs, our group dispersed and we all went our separate ways.  It was time to get down to business.

Our group consisted of 2 amazing women from Maine (Theresa and Oriana) and Ralph and I.  Christine from the IDF would accompany us to our first meting and Larry (from IDF also) would accompany us for the rest of the day.   We had 6 meetings scheduled for the day.

We had an hour before the chaos of our meetings would ensue, so we took advantage of the opportunity to sit, gather our thoughts and discuss any questions/concerns that any of us might have.

Our first meeting was with with Sen. Snowe’s (ME) office.  Theresa and Oriana took the lead and they did a fantastic job detailing their story and the need for this legislation.  Her aide was compassionate and listened diligently to us speak, we took a picture and off we went to our next meeting.

Next up was Sen. Kerry’s meeting.  We met with his aide, Megan.  This is our 5th year meeting with her.  Since Sen. Kerry was one of our champion original sponsors for this legislation, we took this opportunity to thank her and the Senator for all the hard work that they had put into helping us.  I can’t even begin to tell you how amazing Megan, the rest of the staff and the Senator have been.  There is no greater feeling than knowing that you matter – no matter how vast or few you are in this world.  We also discussed a few other pressing health care issues, took a picture and headed out the door.

We made the trek across the Hill to the House side to meet with Congresswoman Tsongas’ aide, Sara.

It was a great meeting and she assured us that this was something that was important to the Congresswoman.  She was going to look into it and get back to us.  We took our picture and made our way to our next appointment.

We met with Congressman Michaud’s aide, Emma and left feeling positive about our discussions.  Again, the Maine ladies stepped up and did a fabulous job!  We took a quick picture and headed to our next meeting.

Our next meeting with with Sen. Collins’ aide, Priscilla.  When we sat down, she opened her notebook and I saw that she already had notes on our legislation.  It was a pretty awesome feeling to know that she took our meeting so seriously.  We shared our stories and then we headed out to our next meeting.  Unfortunately, due to time constraints, we did not get a picture with her (we’ll have to save that for our Maine gals to do!).

We rushed from the Dirksen building to the Russel building, making it there just in time – only to realize that Sen. Brown’s room assignment had changed – and his room was actually in Dirksen!  Our exhausted but determined group hurriedly made our way BACK to the building we just came from and arrived for our meeting with one minute to spare!
Our meeting with Sen. Brown’s aide, Laura, went very well and, while she couldn’t make any promises – she couldn’t understand why they hadn’t already signed on.  She was going to look into the legislation and get back to us.
We took our final picture and left the office.

Outside the office, we all let out a collective sigh of relief – the day was finally over and we had really positive feedback.
With that, we headed back to the hotel to meet up with the staff in the lobby and share our experiences.
Upon our arrival, we got to share some last minute hugs and hear the updates of others.  It seems like, overall, the rest of our group seemed to have similar reports:  Positive feedback and a lot of hope taken away from the meetings.

As fast as our Zebras descended upon Capitol Hill – most departed.

Ralph and I stayed another night in order to not push myself too much physically by doing a 9 hour or so drive back home after only getting a few hours of rest.  We decided to take advantage of the sunlight and warmth and head out to see the Cherry Blossoms.

This year was the 100th year Celebrating the Cherry Blossoms and we just happened to be there during their peak.

It was beautiful, breathtaking, and the sweet aroma embraced the breeze and kissed every inch of your skin.  I don’t know if I could adequately describe how it felt – there was an excitement that permeated the atmosphere that I had never felt before.  Thousands and thousands of people were there celebrating nature, freedom, unity….

The blossoms feel from the trees like snow….

And people were stopping along the water to take pictures…

I was one of them too…I couldn’t resist.

Of course, during all of this – there had to be a little chaos as several low flying helicopters made several passes around where we were and sirens screamed on the ground.  One can only assume that one of the helicopters carried the President or someone very important!

Ralph and I were able to take a sunset roll/stroll (I rode in my power chair while Ralph walked) along the water holding hands and just enjoying a priceless moment in time.

So blessed.

On our way back, we ended up walking behind this couple for a few blocks.  They were just so sweet….I had to take a picture.  I hope that in 20 years, Ralph and I can be as close as they were…

We made it back to the hotel just as all the lights in the city came on – it was pretty neat to see the city lit up in all it’s glory!

To see all the pictures that were taken of our trip, go HERE

I took a few minutes to upload some pictures and checked my email.  Much to my surprise, I received an email from Larry (IDF) that Congresswoman Tsongas had immediately signed on to our legislation!!!  What a great feeling that was!  After that news, we decided to end our night on a good note and we both crashed for the night.

This morning, we packed up our belongings and I sat down at my laptop to send emails to everyone we met with yesterday thanking them for their time, support, and sending those who requested it whatever information they needed.  I didn’t want the chaos of returning home and getting settled to get in the way of letting our legislators know how much their time and attention to our issue meant to us.

We left the hotel feeling like the world was a whole lot brighter because our group stood up and stepped up and DID SOMETHING! We had over 90 meetings yesterday as a group and it felt good to DO good!

We just entered New York and all I can think about is Will and Sasha.

They are the reason that I do everything I do – and I know that Ralph feels the same way.  We have missed them SO much over the past few days and it was SO hard to leave them, especially with both of them having some really big stuff going on medically lately, but God Provides

And my parents, my friend Sherri, my soul sister Chelsea & her husband Keith and my Aunt Louise all worked together and made it possible for Ralph and I to travel to DC and be a voice for those who could not speak for themselves. I am grateful beyond words.

As hard as it was to leave a weepy Sasha and Will at home – the importance of our mission outweighed a few days for them.

Some of you may be curious and wonder “What legislation are you talking about?”

The legislation is identical on both sides:  S960 and H1845.

Here’s the skinny:
When Medicare added in a benefit about 10 years ago for individuals with Primary Immunodeficiency Disease (PIDD) under Part B – the language of the provision was written poorly and, unfortunately, it basically created a hollow benefit.  Patients could receive their infusions in the home, but Medicare would not pay for the necessary nursing or the supplies.  Also, the reimbursement rate was sub par.  When this took effect, patients began having difficulty gaining access to life saving treatments because it became less than optimal for many infusion centers to offer this product for Medicare patients.  It also forced patients who had been infusing at home, with a nurse – to find an infusion center to go to.  Let’s think about this for a moment….these patients have broken immune systems and Medicare wants them to GO to a hospital, infuse in an infusion center (many of them are cancer centers – which poses a greater risk to both the PIDD patient and the cancer patient).
There was one story that I had heard about a man who was receiving home infusions with no issue until he turned 65 – he suddenly had to travel FOUR hours to an infusion center in order to get a SIX hour infusion…only to have to travel FOUR hours back home.  Eventually, this became too difficult for him to do and he became a recluse because he was unable to access the care that was best for him.
Another story, MUCH closer to home – is that of Michelle Fox’s father, Erlend (to watch his story, click HERE).  After going his whole life undiagnosed and being told that ‘nothing’ was wrong with him or that, ‘you’ve lived this long without diagnosis/treatment – why bother to start now?” – he became gravely ill.  They pushed hard to get sent to Boston from the hospital he was currently in.  Sure enough, he lab results confirmed what they had long suspected –  Erlend had a Primary Immunodeficiency Disease.  After very serious and life threatening infections, he finally was approved for IVIG infusions.  Medicare refused to pay for a nurse to come to his rehab hospital (he was in this recovering from several life threatening infections), so he was shipped out of his private room at the rehab hospital (which was required for his particular infection – that Medicare was paying for), put him in an ambulance and he traveled 2 hours into Boston to the closest infusion center.  He was administered his 6 hour long IVIG infusion and then placed BACK into the ambulance for another 2 hour ride BACK to his PRIVATE room at the rehab facility.

It doesn’t take rocket science to see all of the problems with this – taking a frail, immune compromised individual with serious infections OUT of one hospital setting, into an ambulance, into a setting where cancer patients with often NO immune systems are having their treatments, exposing him to even more germs, putting him back into an ambulance for a 2 hour ride back to the hospital from which he came.  Since Medicare is not interested in these things – it absolutely astounds me that they are not focusing on how much MORE it is costing them to do it their way…..not allowing the nurse to come to the hospital that he was currently in to infuse just made NO sense – but it was their policy – and that policy cost them SO much more!  How does this make ANY sense????

These stories repeat OVER and OVER again in our patient population.

All this legislation does is offer a 3 year study that is capped at 4,000 Medicare patients that evaluates the benefits of providing payment for items and services necessary to administer IVIG in the home setting as well as evaluation of the new payment methodology in all settings.  The cost of this study is offset in full and detailed out in the legislation.

After reading all of this….are any of you willing to DO SOMETHING really simple but incredibly important RIGHT NOW?  If so, please go to the IDF’s Advocacy Center and take a few moments to send a letter to your legislators asking them to support this legislation.  IDF has made it VERY simple to do this – and there is already a drafted sample letter that you can send ‘as is’ or add in your own words.  To you, it is one minute of your time….to us – and all those affected by PIDD, it is a lifetime.
Remember, it feels good to DO good…..so, go….DDO SOMETHING!!!!!!

Thanks for reading…..

Love and Light,
Stefani

When Will & Sasha were first diagnosed with Primary Immunodeficiency Disease (PIDD), it felt like our whole world was crashing down on us. We were alone, overwhelmed by all the information on the internet, and angry that both children would have to walk the same path. It was almost suffocating at times. Some of our family (who didn’t have to deal with this on a daily basis) and a lot of our friends just didn’t get what we were going through. It was the hardest time of our lives and we felt so alone.  We spent a lot of time in and out of hospitals with both kids and the toll it took on us was incredible.

When it was determined that Sasha’s immune function was poor enough that she needed to begin infusions of Gammaglobulin, panic completely took over.  We began to research the 3 options given to us (1. IVIG, 2. SCIG, and 3. Do nothing).

Obviously, it became clear quite immediately that option 3. Do Nothing – was not only impractical, but it could carry grave consequences given what was going on with her.

Option 1. IVIG wasn’t practical for Sasha because she had poor venous access and I wasn’t really wild about having to go to the hospital once every few weeks and expose her to more germs in order to get her infusions.

It became apparent, after listing out the pros and cons that Option 2. SCIG was going to be our final decision.  This would mean that Sasha would have to have weekly subcutaneous infusions of blood product pooled from thousands of donors.  It broke our hearts to make this decision, but we knew that SOMETHING had to be done.

We were very lucky to have an amazing and compassionate immunologist

As well as a national patient organization, the Immune Deficiency Foundation (IDF) to answer all of our (numerous) questions and guide us through this maze of uncertainty.

We were blessed to have my parents by our side to help us when we needed support most.  We were encouraged when some of our friends stepped up to the plate and stood by us, even though they didn’t really understand what was going on.  We were also VERY fortunate to have insurance that covered the exorbitant cost of the medication that we ultimately deemed, “Liquid Gold.”

As we became more educated about the many uses for blood (see here), we realized that we needed to raise awareness in our community – not just about OUR need, but the need of others.  We had felt SO powerless to control what was going on with both children – and now, with Sasha needing infusions, that we decided it was time to DO SOMETHING.

I contacted the American Red Cross and also Children’s Hospital of Boston and set up my first community blood drive.  We had an amazing turnout and it felt incredible! Our community stepped up and shared our journey.

We decided to take it one step further and march in the local parade to raise awareness for PIDD and the existence of the IDF.  It was amazing to be able to be part of something positive despite the difficult undertones, and it was something I threw myself into completely.

As time went on, it was determined that Will also was going to need to start infusions as well.  It rocked our worlds as it was something we didn’t expect, but we took the news head on and kept our focus on teaching the children that we could do great things no matter what our obstacles were.The blood drives continued, the fundraisers continued, our awareness efforts continued.  It was no longer about Sasha, Will, or even our journey – it was about SO much more.

As time went on, the blood drives continued and our efforts grew from on local family to 3 local families (our family, the Fox family, and the Spinale family).  We worked together on patient education, community awareness, blood drives, and fundraising.  It was wonderful to get to know people who were going through the same thing you were and to be able to help each other through the difficult times.

When the IDF contacted me and told me that they were working on legislation to enhance accessibility to IVIG for our patients and told me of how patients on Medicare were fighting – not only for their lives, but for access to these life saving treatments…I knew I had to DO SOMETHING!  I jumped at the opportunity to reach out to Sen. Kerry and share our story and the story of the others out there in dire situations.  Within 3 days, Michelle, Eleanor and I were eagerly awaiting the arrival of Sen. Kerry’s Chief of Staff at my home.  He listened to each of us share the story of our family’s struggles – he met the kids, he had cake and coffee…and, when he left, he assured us that this was certainly something Sen. Kerry would take notice of.  Sure enough, Sen. Kerry showed up at our next blood drive and announced that he would be an original sponsor of the legislation we had asked for his support on!!!  It was AMAZING to know that our actions set a bigger ball in motion.

I had some PIDD patients on one of the online forums I belonged to ask why we were getting involved in something that didn’t directly affect us (our children were not on Medicare), and my response was that this journey was no longer about Will & Sasha – it was about every person out there fighting for the same thing we ALL deserve – proper care, treatment…and maybe even one day…a cure.  This was about something bigger than what existed within the walls of our home.  God gave me a voice and I planned on using it.  After all, everyone deserves these things…not just Will & Sasha.  My feeling was this:  You will get nothing if don’t DO SOMETHING!

The IDF asked if our group would be willing to join them in Washington, D.C. for their Capitol Hill Day.  Without hesitation, we all said, “YES” – it was time to DO SOMETHING!

Dozens of us from all over the United States converged on Capitol Hill and shared our stories with our legislators.  While we met some resistance, it started to pave the way for the many years to come.

Every year since, I have joined my fellow PIDD families on Capitol Hill to DO SOMETHING….and it has felt incredible!  Each person that was there was there because they felt driven to DO SOMETHING.  Last year, we were finally able to work it so that Ralph could join me also.  He said the experience was indescribable…and I agree!

This year marks the 5 year that I have participated in Capitol Hill Day.  Tonight, we will once again gather in the conference center and discuss progress, obstacles, and our goal for this year. Thursday, we will take on Capitol Hill!  I am again so blessed to have Ralph by my side again this year and am so grateful to my mom & dad, Sherri, Chelsea and Keith for making that possible.

I can’t even tell you what an honor it it to be out there representing my fellow Zebras.  I can’t even begin to tell you how good it feels to know that our voices are the voice of change, hope, and comfort to so many.

I will be sharing updates on my blog, the Team Hope page and on my personal page on Facebook today and tomorrow.  I hope you will follow our efforts!  This is an exciting time for us and we want you to be a part of it and be inspired by it!

Instead of allowing our situation to destroy us – we let it heal us.  Instead of letting this disease muzzle us, we let it empower us. Instead of standing down, we are standing up.

I encourage each and every one of you out there to take a moment and think about things in your life that you might be able to DO SOMETHING about.  It may be as simple as writing a letter to a legislator or writing your story out to your local newspaper….or it could be as hard rolling up your sleeves and getting yourself involved in a difficult task that you never thought you could take on.  I want to remind you that YOU have the power to DO SOMETHING….YOU have the power to CHANGE LIVES…YOU have the power to MAKE A DIFFERENCE.

My friends, there is nothing more satisfying and nothing more uplifting than knowing that you are part of something bigger and more important than what exists in your own little microcosm. It’s not as hard as you think it is to make a difference…..you just have to DO SOMETHING!

I leave you with this:  It only takes ONE person to change ONE life….BE THE ONE – DO SOMETHING!

Stay tuned for updates….

Love and light,

Stefani