THE BIGGEST CHALLENGE OF MY LIFE!

Yesterday, along with my Mom, Brother and Niece I attended the first of two Lung Transplant Education Classes that I am required to take in preparation for a Lung Transplant.

It has been a long and difficult journey just to get accepted for a transplant and finally put on the Lung Transplant Waiting List. The class was 3 1/2 hours long and there is so much to learn it is overwhelming. We all have an idea of how organ transplantation works but there is so much more to it, you’d be amazed.

The Procurement Nurse conducting the class told us up front that this was going to be a lot of information that was not going to be sugar coated. We were getting the cold, hard facts about what we would be facing if we get a lung transplant. And it is a lot to take in.

OPTN (The Organ Procurement and Transplantation Network) oversees all organ transplants in the United States working on conjunction with UNOS (The United Network for Organ Sharing). Here is a link to both web sites where you can read more about how the two organizations work together in the process of organ procurement and donation.

http://optn.transplant.hrsa.gov/optn/

http://www.unos.org/about/index.php

The class was very detailed, explaining what indicators are considered in determining if a Lung Transplant should be an option in an individual’s situation. They explained much about the Thoracic Anatomy and how our lungs function and the other organs that are impacted by a transplant, the nerves involved and what can happen during surgery. They explained all the potential risks involved in having a transplant, and there are many.

We learned about the difference between a single lung transplant and a bilateral lung transplant.  How the incisions are made and the actual procedure. We were told about how, following surgery, we would be intubated for a period of time under sedation, the chest tubes and their purpose. We learned about all the complications that can happen following surgery to each of us. It’s intimidating to say the least.

Learning about Organ Rejection and how to prevent it was so informative. Our bodies will NEVER recognize and accept our new organ(s) - NEVER! It will constantly be trying to attack and reject the new organ. This is why we will be taking so many anti-rejections medications FOR THE REST OF OUR LIVES!! In addition, because those anti-rejection medication suppress our immune systems, we are vulnerable to getting other things like infections. So we must take more medication to help prevent infections. We were told we will be taking somewhere between 40-50 pills every single day.

Taking our medications as instructed, ON SCHEDULE, is vital. If we are to take a medication at specific times of day or at certain intervals, we MUST do so or risk rejection. NO, oops I forgot so I’ll take it now. 

We will have to monitor our own vital signs every single day; weighing ourselves, taking our temperature, taking our own blood pressure, spirometry, blood glucose testing. We must document this information every single day for the rest of our lives. This is how we can be on the lookout for early signs of rejection.

That’s the key. Catching signs of rejection early is so important because it can be treated. We must be detectives. 

Following very specific dietary guidelines, avoiding certain foods altogether, cooking foods a certain way, washing produce.

It is, we were told, a strong likelihood that 8-9 out of 10 patients will go through a rejection episode; it’s inevitable. Catching it early is how to beat it back. So we must follow our instructions, be vigilant and never hesitate to contact our Transplant Coordinator even with the smallest question.

You can see why the Class was 3 1/2 hours long. I’ve barely scratched the surface of the information we got yesterday. 

There is so much more to learn. Class #2 in two weeks and I am to attend two separate Support Group meetings as well.

So the process is underway. I am going to Pulmonary Rehab twice a week. I have the second Education Class to attend and the two Support Group meetings. And I wait. 

It’s intimidating for sure. It will be the biggest challenge of my life, if I am lucky enough to get the call that they have lung(s) for me!

"LET IT BE" - The Beatles