Breathing is something most people take for granted. Marielle Livesey’s greatest wish is to just breathe. Born in 1986, Marielle was born with pneumonia and several months later developed scar tissue in her lungs. She finally went home for the first time after a three month stay in the NICU – she was very tiny and sick, nonetheless very sweet and happy. While her doctors hoped that she would outgrow her lung difficulties, that did not happen and today Marielle battles end stage Chronic Obstructive Pulmonary Disease (COPD) and is in immediate need of a double lung transplant.

February 6, 2014

A word from Marielle....

Settling into our New Apartment, Southern Hospitality and Transplant Evaluation

This week has continued to be busy and chaotic, but we have had another smooth transition. My dad flew into Boston last week and with the help of my family (thank you to everyone) he was able to pack our belongings into a moving truck and drive the truck down to NC. Chris flew into Boston as well to get some of his things, and spend time with friends and family. He drove my dad’s car down here so now we have two cars, which gives everyone a lot more independence.

Moving into our new apartment went pretty well. Now we are just trying to organize everything and put everything away. Kona is happy here because our apartment backs right up to the woods, and there are lots of places to run around. There is also a dog park for here to make some new doggie friends, but the weather has been so cold and rainy we have not had a chance to make it over there yet.

We continue to be pleased with our experiences in the south, specifically my dad. Now, I don’t mean to insult my hometown or anyone up north, but here is the latest example of something that has stuck with my dad and keeps coming up in conversation. Like I said above, it has been cold and rainy outside. My dad was walking out the door of grocery store when a woman approached him. She noticed he did not have an umbrella, so she offered to walk him to his car so he did not have to get wet. He couldn't believe it. In addition, now he thinks all the ladies want him. Oh Dad…

Tomorrow, I will spend the majority of the day at the hospital with Chris and my dad. The transplant team wants to meet both of them because they are my caregivers. Having a primary and secondary caregiver is part of the criteria for being accepted into the transplant program, and they have to attend all of my pre and post transplant appointments, along with attending educational classes about the entire transplant process from coping, stress, managing medications, providing care post transplant etc.

My appointments for tomorrow are a 6 minute walk test, blood work, lung function tests, and a blood gas. Later we meet with Duke pharmacist to learn what medications I will be on and ways to manage all of them. We meet the finance coordinator to show we are actively raising funds and will be able to afford the cost of transplant and care after. The last test of the day is a 24 hour pH probe to measure acid reflux. This will be the worst test of the entire evaluation. They place a tube up my nose to measure how well my esophagus can swallow. The tube is removed, and replaced with a new one which is fed down to my stomach and remains there for 24 hours. This test measures any acid reflux. If the test shows I have too much acid reflux, I will have to have a Nissen procedure where they wrap my stomach around the base of the esophagus to prevent any stomach contents traveling north and aspirating into my lungs, which is a major cause of rejection. I have acid reflux quite often so I will probably end up having this procedure done. We’ll see how it goes.

Later next week I just have to meet with the transplant surgeon and the pulmonologist, and my evaluation will be complete on February 10!

Current health condition is okay. I do alright as long as I am on 4L O2. Otherwise my SATS drop down to about 84. It seems my stamina has greatly decreased. I am not able to do a lot of what I was able to do even a few months ago. But, that is what we expected, and the reason this entire process was expedited. I am truly grateful for that.

I want to end this update on a bittersweet note. I have joined multiple lung transplant groups on Facebook and have had the opportunity to speak with several people and learn their story whether they are pre or post transplant. Some stories are happy, and others are sad. One common theme I have read is that many are having trouble with their finances, and for this reason they cannot be accepted into their respective lung transplant programs. Some transplant centers even require their patients to pass a full credit report. I understand and respect this criteria to be accepted into their programs because it ensures you have to finances to take good care of your new lungs after surgery, but it breaks my heart that people are dying and getting sicker by the day, and cannot even be evaluated for surgery until they get their finances in order.

On that note, I would like to send a huge thank you to everyone who has done anything to help me along this road to being able to breathe. Everything and anything anyone has done is graciously appreciated.

Much Love to Everyone!