Denied for Transplant List

Denied for Transplant List. Most of us don’t know how the whole transplant system works. It’s stays out there in a vague corner of our mind. It’s a place that we don’t want to think about. Ever. Then something happens, like liver failure or cancer and suddenly we need to know. We venture into the process with our medical team. For some, one test leads to another until we are listed. You can read more about that here. But what happens when you are denied for transplant list for whatever reason? Just so you know, I’m posting this quickly and “as is” for a certain best friend who was just denied. It’s messy and was typed late last night as a way to try and understand what he is going through. Argh. Cry I put hyperlinks throughout to more info about listing.

The Transplant Tests

Physical

MRI – A magnetic resonance imaging machine takes slices of pictures of your body. It is used to locate the size and location of tumors if you have liver cancer. It can also be used to rule out the presence of any other tumors in your body.

Blood Labs – I can’t name every single test that’s done. Each doctor, hospital, and medical condition is different. I know they check cancer, or tumor markers, blood gasses, and more.

Pulmonary – The lung test is done by doing various breathing exercises where the strength of your ability to inhale and exhale is measured. They test your oxygen uptake to see how well your lungs can handle stress.

Cardiology – In order to see if your heart is strong enough to make it through a several hour surgery, they test your heart. A stress test can be performed on a treadmill while you are hooked up to heart monitors. If you are too weak, they also perform it using blood tests.

Bone scan – This is one of the last tests they performed on me. It takes a long time and looks to see if there are any signs that disease or cancer has spread.

The Hospital Has a Routine and Will Help You

The Transplant team also looks at your psychological health, habits, and ability to pay for immune suppressant medication for life. It was a TOUGH 4 days and I talk about it cheerfully if you click this link, but it was TOUGH.

The Hard Part

If your physical health is weak in any of the above areas, the team will evaluate your ability to list. Most hospitals will not give a life saving organ to someone who was not physically, or otherwise, able to take care of the organ for whatever reasons. The links below have details about the compliance, and may bother some people to read. If so, don’t click. There are guidelines to follow and every hospital is under scrutiny by United Network for Organ Sharing (UNOS), Organ Procurement and Transplantation Network (OPTN), and federal government agencies. 

What happens when you are denied for transplant list depends on you and your doctor. If you are in liver failure, they will do everything they can to help you sustain life. The liver can fail differently for everyone. For me, it was Internal bleeding that triggered ascites and liver shutting down. Others have extreme jaundice, but never experience swelling. Others might have heart weakness caused by stress to the entire body. Someone else might have a strong heart, and have a near fatal a bleed. That was my case, yet hepatocellular carcinoma put me on the list, it was a fear of mine to be denied, but deep within, I had a plan.

Plan for the Best and Accept Everything

After living with cirrhosis for so many years, I grew tired at times. I didn’t want to die, but sometimes living took a lot of energy. While going through some of the more scary hospitalizations, I came to terms with death.

I didn’t know how I would die, but the idea of death no longer frightened me. I wanted to be at peace with death, so I thought about it, wrote about it, and prayed about it. I began to focus on each moment as a thing of beauty. Each breath became a gift. Every relationship, a treasure. I had short, but serious discussions with the important people in my life. Then I moved into the most loving place that I could. I gave my attention to loving myself and caring for myself the best I could. From that place, my heart was so filled with love, that it was easy to focus on my family and friends.

Denied for Transplant List

This is written for any of my best friends who are denied for transplant list. It’s happened to several that I know of, and my heart goes out to you. This is a part of the journey that we must go alone, knowing that we have the love and support of our friends. I have faith that your strength and courage will hold fast through your journey.

This is not the end, it’s the beginning of a new understanding of life. xo Karen