I Have Hemophilia. Can I Be An Organ Donor?

By Jeff Cornett, RN, MSN, Director of Training, Research & Advocacy

We are frequently asked that question, especially at this time of year – April was Donate Life Month.  The short answer is: “probably yes.”  Read on to see what the answer is for your particular situation.

First of all, thank you for wanting to be an organ donor. The need is great. According to the U.S. Department of Health and Human Services, each day an average of 79 people receive organ transplants; sadly, however,  21 more die because an organ wasn’t available. One organ donor can save up to eight lives.

Second, recognize that there are two types of organ donations: those from a living donor and those from the deceased. If you are considering donating an organ now, while you are still alive, stop reading and go talk to your doctor. Because of your increased risk of bleeding with surgery, you’ll probably be discouraged from donating except under the most dire of circumstances. If you want your organs to be used after you die, keep reading.

Do you have HIV? If you do, donation centers are prohibited by law from accepting and transplanting your organs.

Do you have Hepatitis B or C? Not a problem. It is accepted medical practice to transplant organs from people with these infections, typically into people who already have these viruses.

But what about my hemophilia or other medical conditions I have? After you die, the medical team will take all of those into consideration in deciding which of your organs and tissues can be used. Potential organs include the heart, liver, lungs, kidneys, pancreas, and intestines. Donated tissues provide heart valves, bone, skin for burn victims, corneas and eyes, and tendons and ligaments. You’ll have something someone needs!

Okay, so my hemophilia doesn’t disqualify me. But am I too old? Age doesn’t matter. Neither does race, ethnicity, or sexual orientation. Organs and tissue are needed from everyone from newborns to senior citizens. If you are younger than 18, you can sign up to be an organ donor but your parents or legal guardians will have the final decision about donation if you die.

I’m convinced. How do I sign up to be an organ donor in Georgia? Through my driver’s license?  In 2008, Georgia created the Donate Life registry. It allows Georgians to register their authorization to donate specific or all organs and tissues upon their death and is the only way to fully ensure that your wish to donate is honored. It is a secure, confidential database whose information is verified by the Georgia Department of Driver Services. Georgians can join the registry through the Donate Life website: https://www.donatelifegeorgia.org/. The website also has answers to many other questions. If you already have “organ donor” on your driver’s license, you still are encouraged to join the new registry to ensure your previous designation is documented.

I don’t live in Georgia. What do I do? Go to the federal government’s website: www.organdonor.gov/. It has tons of information about organ donation and a link for signing up as a donor in your state.

One more question: If I have hemophilia, can I donate blood? Because of the risk of bleeding, many blood collection centers turn away donors with hemophilia. Other centers turn away anyone who has ever received factor concentrate because of the risk of virus contamination. Maybe most importantly, you shouldn't donate blood because you need to protect your veins. When you infuse factor, you use one of the smallest size needles available (23 or 25 gauge). It makes the smallest possible hole in your vein. Blood donation uses one of the largest needles (16 or 17 gauge). It makes a large hole in the vein so there is little chance of hurting the red blood cells as they flow out of the body. This is not a problem for people who only have a needle stuck into their arm every eight weeks or more. The vein has time to heal and there is little chance of scarring. But that’s not you. You need your veins in top shape all of the time so you can infuse factor when it is needed. Not only will a 16 gauge hole in your vein cause bleeding that is hard to stop, with a painful bruise or hematoma, you’ll be making an important vein unavailable to you for infusion. Be a good citizen by becoming an organ donor, not a blood donor.

But I have von Willebrand Disease (VWD), can’t I donate blood? Some blood collection centers will accept donations from people with VWD who have never had a major bleed or required treatment for their VWD. Call first and talk to a donation counselor.