How Does The List Work


I have been on the list for 163 days now. which isn’t a lot compared to some friends I know who have been waiting over two years.The question we get asked the most is how does the wait list work. Well, it’s definitely not like a deli counter line. You do not wait for your number.

The way transplantation works is, there are four statuses 7, 2, 1b, and 1a. The bottom status is 7, this means you are listed but you are unable to have surgery to due the flu or another issue, next is status 2. This is where I currently am. I need a heart but not right away. I am living at home, on oral medication and oxygen. Next is 1b, this means you need a heart soon. You may have an artificial pump like an LVAD or are on iv medication but you still live at home. The last status is 1a. You need a heart immediately and are living in the hospital until you get one. I hope I am never status 1a.

In order to determine you gets a donor heart, it works something like this. Everyone is listed nationally by number and broken down into OPOs, which stands for Organ procurement Organization. Our OPO is CORE (Center for Organ a recovery and Education), which I am a volunteer for. CORE spans 500 miles and includes parts of Pennsylvania, New York and West Virginia. There are 7 hospitals in this region. So in terms of “competition” it would be the patients listed at these 7 hospitals. So say someone dies and they are a registered organ donor. First CORE is contacted that they may have a possible donor. After the CORE representative talks with the family, things start to roll. Information is entered into the UNOS database, this is the United Network of Organ Sharing “the list”.  Blood type, tissue type, antibodies, height, weight and location are entered. Once this is done, the match is determined based on these factors and my status. If more than one patient matches all the criteria then the deciding factor is who has been waiting longest or is in need more.

We are basically on call. The call can come day or night at any time, and we have to be ready to move. The donor heart can only stay outside of the body for four hours, so time is of the essence. want me at the hospital before they remove the heart from my donor’s body, so everyone is in position ready. Once the heart has been removed the doctors at that hospital will inspect it, then send it to my hospital for inspection by my surgical team. At any time, the transplant can be called off. I will be in the OR waiting when the heart reaches my hospital. There is a lot of behind the scenes work going on. Most of our friends and family know about our new traveling radius. We can’t go further than thirty miles from our house in case the call comes in. It will take us two hours (in good weather) to get to Pittsburgh and I will need to shower first also. The surgery itself will take anywhere from 8 to 12 hours due to my anatomy and scar tissue. then its to the ICU, then the step down unit on the 9th floor for about two weeks.

People always ask me if I am scared to have my heart cut out and another one put in. No, I am not scared of the surgery. What I am afraid of is not ever getting the call. There is a serious shortage of organ donors and every day 21 people die waiting. I do not want to be one of them.


Be a hero. Be a Donor.


On with the new year

I was on a little blogging break during the holidays, no worries I am back now and using a new platform! Blogger was such a pain in the rear. Thanksgiving and Christmas were quiet, which was nice. I finally had my gall bladder removed after five years of painful attacks, the recovery was much worse than I thought. My body was so weak and recovery was a slow process. Now I am trying to be a little more active knowing that my body is getting weaker and the transplant surgery is going to kick my ass.  I have a mini peddler I use which is like a bicycle but just the peddles. I am able to do 10 minutes with my legs in the morning and 10 minutes with arms after my nap in the afternoon. I try to do it every other day, most times I have to force myself and sometimes I need to skip altogether.

That brings me to my exhaustion. One of the biggest symptoms of heart failure is fatigue. This is not your average normal fatigue; this is can’t get out of bed, sitting to brush your teeth and getting muscle fatigue after showering kind of fatigue. What causes this horrible fatigue you ask? Well, I’ll tell you. This symptom is because my heart cannot pump enough blood to keep up with the demands of my body, so it diverts blood away from less important muscles and tissues like my limbs and sends it to the heart, brain and kidneys instead. As a result, I am always tired and lack any energy. I sleep approximately 10 hours at night then I usually nap one or twice during the day. If I ignore my body and sleep less then I pay for it for days with even worse fatigue. This blood diversion also cause my limbs to constantly fall asleep, which is rather bothersome but manageable.

I have been waiting for a donor heart almost five months and have decided this year to try to move more even through the fatigue. I think I may have a long wait ahead of me and my body cant afford to get any weaker. with that said, I’m off to peddle.


Be a hero. Be a donor.