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!--