Friday, April 11, 2014

I want to Honor you!!!

I have got a great idea, but I'm keeping it secret for just a for weeks more!! If you are an Organ Donor I want your picture!! Please text it to me at 804-7205615. If you want your name included or anything else please add it to the text, if your phone cannot send text send it to my email at
Thanks so much for your help!!

Tuesday, April 8, 2014

Common Myths about Organ Donation

Common Myths Of Organ Donation

Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. It's a tragedy if even one person decides against donation because they don't know the truth. Following is a list of the most common myths along with the actual facts:
Myth: If emergency room doctors know you're an organ donor, they won't work as hard to save you.
Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ donation can only be considered after brain death has been declared by a physician. Many states have adopted legislation allowing individuals to legally designate their wish to be a donor should brain death occur, although in many states Organ Procurement Organizations also require consent from the donor's family.
Myth: When you're waiting for a transplant, your financial or celebrity status is as important as your medical status.
Fact: When you are on the transplant waiting list for a donor organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information.
Myth: Having "organ donor" noted on your driver's license or carrying a donor card is all you have to do to become a donor.
Fact: In most states, hospitals can legally proceed with organ, eye or tissue donation, without consent from next of kin, if you have a driver's license with an "organ donor" designation are have signed up with an organ donor registry. However, it's important to talk to your family about your decision to donate LIFE so they are aware of your wishes and will feel comfortable honoring them.
Myth: Only hearts, livers, and kidneys can be transplanted.
Fact: Needed organs include the heart, kidneys, pancreas, lungs, liver and intestines. Tissue that can be donated include the eyes, skin, bone, heart valves and tendons.
Myth: Your history of medical illness means your organs or tissues are unfit for donation.
Fact: At the time of death, the appropriate medical professionals will review your medical and social histories to determine whether or not you can be a donor. With recent advances in transplantation, many more people than ever before can be donors. It's best to tell your family your wishes and sign up to be an organ and tissue donor on your driver's license or an official donor document.
Myth: You are too old to be a donor.
Fact: People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissue can be donated.
Myth: If you agree to donate your organs, your family will be charged for the costs.
Fact: There is no cost to the donor's family or estate for organ and tissue donation. Funeral costs remain the responsibility of the family.
Myth: Organ donation disfigures the body and changes the way it looks in a casket.
Fact: Donated organs are removed surgically, in a routine operation similar to gallbladder or appendix removal. Donation does not change the appearance of the body for the funeral service.
Myth: Your religion prohibits organ donation.
Fact: All major organized religions approve of organ and tissue donation and consider it an act of charity.
Myth: There is real danger of being heavily drugged, then waking to find you have had one kidney (or both) removed for a black market transplant.
Fact: This tale has been widely circulated over the Internet. There is absolutely no evidence of such activity ever occurring in the U.S. While the tale may sound credible, it has no basis in the reality of organ transplantation. Many people who hear the myth probably dismiss it, but it is possible that some believe it and decide against organ donation out of needless fear.

Thursday, March 20, 2014

I've joined the "BE THE MATCH' registry !! Now it's your turn...


Thank you for submitting your online registration for the Be The Match Registry®. Your kit has been ordered and will be sent by mail to the address you provided. It should arrive in about two weeks.

When you receive your kit, please follow the instructions on the kit and return it right away. You can also see step-by-step instructions online Collecting your samples only takes about five minutes, and it's your last step to join the registry.

In the next few weeks, watch for a series of three emails welcoming you to the registry. These emails will offer more information to help you understand your commitment and what to expect, as well as ideas for spreading the word about Be The Match® to your friends. (Tip: To make sure our emails are delivered to your inbox and not your junk folder, add to your email address book.)

Thank you in advance for returning your kit quickly. By choosing to join the registry, you are giving more patients hope for a future.

Be The Match

Join the "Be A Match" Registry

You can be a Hero--Let do this together!!

-          Get people to Join!  Joining the bone marrow registry is easy!  It’s so easy you don’t even have to leave the house.  Please share the following link on your blog and Facebook (use promo code: Virginia).  You fill out some information online (mostly contact information) then a cheek swab is sent to your home.  Swab your cheeks and send the swabs back.  Then you are eligible to be called if someone needs your help. Super Easy!

-          To join the registry, people need to be 18-44 years old and in good health.  Things that would disqualify you would be a cancer diagnosis, HIV, or any auto-immune disorder (MS, ALS, Crohns, CF, etc).

-          Dispel the Myths!  There are a lot of misunderstandings about being a bone marrow donor and the actual donation process.  I have attached a PDF with Myths v. Facts.  Most people think that bone marrow donation is extremely painful—I here to tell you that it’s not that bad.  75% of the time there donating marrow doesn’t invovle surgery—it’s like giving blood.  Also, Be The Match will never ask you to donate if there is not a patient on the other end.  If we need you it’s because there is someone who will die if they don’t get a donation.

-          Host a Drive!  If you want to get involved we can get together to set up a bone marrow drive.  These are done every day all over the country.  This is where we will set up a few tables at a church, school, community center, lodge and invite people to come and swab their checks to join the registry.  They are easy to set up and I can help you organize the drive.

Wednesday, March 19, 2014

About Blood Donation

Different types of blood donation for LVADERS

Autologous blood donation

Donating your own blood for later use is called autologous (aw-tahl-uh-gus) donation. Autologous donation is most often done in the weeks before you have a scheduled surgery that will likely require blood transfusion. Your own blood can then be used during or after the operation to replace any blood you may have lost.
This is generally thought to be the safest form of blood transfusion because you’re getting your own blood back. Still, it’s not totally without risk. There’s always the very small chance that bacterial contamination or clerical errors can happen.
People who aren’t able to donate blood for others may still be able to donate blood for themselves.
There is a processing fee for collecting, testing, storing, and delivering each unit of autologous blood. Be aware that your health insurance may not fully pay for this. There’s also a need to plan ahead so that you have enough time before surgery to have your blood cell counts go back to normal after your blood has been collected.

Directed donation

Donating blood for a family member, friend, or other specified patient is called directed donation. This can be done at any blood donation center, but you should call ahead to check requirements and schedule the donation. The donor must meet the same requirements as for regular blood donation, and the donor’s blood must match the blood type of the recipient.
Blood from directed donors has not been shown to be safer than blood from volunteer donors and, in some cases, may actually be more likely to cause problems. (For example, see “Graft-versus-host disease” under “Transfusion reactions” in the section, “Possible risks of blood transfusions.”)
The same types of testing are done on blood from directed donors. As with autologous donation, there is a processing fee for collecting, testing, and delivering each unit of directed donor blood. This fee might not be covered by health insurance. If the person the blood was intended for doesn't need it, some blood banks will use it for someone else. In others, it may be thrown out.

Are you an Organ Donor?

Jason's First Hospital Stay Since the LVAD

Jason has been VERY fortunate in the last 2 years, in not having any complications that would send him to the hospital, until recently. In February, he started feeling really tired, for me, I thought it was because he had over worked himself the day before, so right away I didn't get too scared.

 By that night he was still resting, and it wasn't until I turned over in the bed that I touched his arm, and poor thing was on fire, he was running a temperature of 101.3 at that point. I called the LVAD coordinator and she told me to start giving him Tylenol every four hours, so I did so. ( even setting my alarm to give it to him) By the next morning it was at 99. so I went to work. During the day I kept calling reminding him to take his medicine and keeping track of the temps. 

By four it had gone up to 103. So they told us that they would call when he could come straight to a room. All that night and the next day was full of test. His blood work was normal. Echo was normal and the Chest X-Ray was normal . It ended up that Jason just had a fierce Virus, so they discharged him, with antibiotics. The next morning he started running a temperature again, and throwing up. I called the coordinator again and she ordered him some nausea meds and told me to keep him hydrated.

 Slowly, but surely he started getting better, but it was at least until the Friday that he felt like himself again. It did bother me for a while that we never knew what this virus was-- but now I'm just thankful its gone...

Check the Hospital Locator --If only for a weekend trip!!

I recently had a company get together in Maryland. Jason and I both had I wonderful time! One thing I have to remind  fellow LVADers is you still need to go to before a trip and find the nearest hospital. I did so, and even called the hospital to make sure. They were very helpful and even gave me the LVAD coordinators cell number in case I needed it!--

Thursday, February 6, 2014

Did You Choose The Right Supplemental Insurance?

This is something that I have been meaning to address. Not only to our MCV/VCU Friends, but to all the LVAD warriors. When Jason became edible for Medicare, of course we had to get a supplemental insurance, which we choose to go with Humana. When I called Medicare I told them what Hospital Jason went to, who his doctor was and a list of his medications. By that, they set me up on Humana HMO.
 I thought everything was taken care of and we received all the paperwork and everything from Humana.It wasn't long though the woman from MCV was calling me telling me there was a problem. MCV/VCU does NOT taken Humana HMO. They let me know that Jason would not receive a heart if one came in for him while he was on this plan.

As you can imagine, I was furious that the so called “professionals” at Medicare and the one that checked the information at Humana let this slip by. Long story short I switch him over to a PPO. (After the Humana rep came to our house) Thankfully Humana felt so bad for the mistake they said it would be covered if he did get the call before January when the PPO was to be active.

So lesson learn, BEFORE making any decision check with your hospital. Don’t leave it up to Medicare or Humana. Also ask that a rep come to your house. Everything is so much easier when it’s right there in black and white.

Sunday, February 2, 2014

For all the LVADers

Someone taught me to Never Surrender a long time ago--- and its something I will never forget-- Thanks for always getting me straight Matthew Cummins.... any LVADer or "caretaker" can appreciate this song...


Happy Birthday Baby!!

Well Mr. Bright your birthday is almost here. Ever since 2010, every time your birthday starts to roll around, I always here you say—I made it another year…and yes honey you have. I want you to look back on the past years and I want you to see just how far you have come—it’s amazing—you are amazing! You always face everything you go through with such bravery… you are truly an inspiration to me and everyone you meet.

I had to put this song on here to remind you where we were in 2011. I listened to this song every day on the way to the hospital (in tears I might add) there was so much uncertainty during this time. The day you got your LVAD is the day I know you wanted to fight, and you have been fighting ever since.

One big thing from this year was –Our wedding!! Goodness, I get chill bumps every time I think about that day! You looked so handsome!!- I felt like the luckiest girl ever, I truly love you unconditionally.

I hope you have the best birthday ever sweetheart—and I’ll be right there by your side for all the ones to come.