Transplant Rogue Irene Marra writes: My story is long and difficult, but everyone has a story!
Giving Back – Even When Unwell
I had been ill for some time and didn’t really have hobbies before transplant, other than playing poker on internet. Now I keep my self busy by thrift store shopping and volunteering for the donor network, the liver foundation, and Feed The Children. I feel like my calling has been to give back by volunteering for events that are supporting personal causes.
Since my transplant surgery in 2015, I have developed Avascular Necrosis in both hips and I have not been able to do much again. I had one hip replaced and on November 3 I will have the other hip replaced. I plan on going back to work with groups that support education and provide assistance in transplant process. So while I’m sitting at home waiting to get my self back in the water, I am trying to make donor blankets.
Seeking An Answer
My family has been plagued with COPD. My mom died at 44, my sister at 46 and my brother at 40. I was told I had it when I was 47. I swore I was not going to die like them, so I quit smoking and starting finding a reason as to what is causing us to die so young. I met with Dr. Kyle Hogart in Chicago and he told me it has to be gene related. After several tests, the results came up with nothing. I was not happy with that answer, so I sought advice at Brigham Young and Harvard to test my whole family and although they could not say for sure it was either a missing gene or chromosome-related, they suspected it could be.
Moving To A Better Climate
I was assessed for lung transplant at the Cleveland Clinic. I had 28% lung function and did not need oxygen, so I was considered ‘too healthy’. After careful consideration I decided with my family that we would move to Arizona from Michigan so I could breathe better: The winter had hit and I was using more oxygen . We moved to Tempe, Az and it’s the best move I ever made. St. Joe’s in Phoenix does lung transplants and it was a blessing to have that here.
Never Give Up
I was doing amazing for 5 years after moving to Arizona – no breathing issues! I even went back to work on a trial basis. But then I developed ITP Autoimmune disease and my platelets were almost nothing. After months of getting no results with treatment and being hospitalized 4 times, I decided it was time to go to the Mayo Clinic for a second opinion. I am so happy I found the Mayo Clinic – they are amazing doctors there. …But, because I had 4 bouts of pneumonia, I had a lot of damage to my already-damaged lungs, and I was back on oxygen within a year.
I kept looking for a good pulmonary doctor and found one in May 2014. It was miles away but I thought, ‘OK, let’s try!’ He saw me, did a bronchoscopy and told me I was in end stage COPD and needed a transplant. I avoided it for some time and had no choice but to see a transplant team.
In The Hands of The Transplant Team
I had no clue what they did or what it was about. I did no research and was sure because of my auto immune disease I would not qualify. I saw the transplant team in December 2014 and didn’t hear back until April 2015 when I learned I was to be tested. Within 2 weeks I was completely through pre-transplant assessment and found out on June 13th 2015 that I was listed.
I still had no clue what i was getting into. I was so happy.
On June 16 I got the call. On June 17 I had new lungs. My journey was just beginning, and I am the most grateful person.
Someday I will meet my donor family and we will both be telling our stories standing next to the picture of my donor.
Irene married her sweetheart in 1980 and they will celebrate their 36th wedding anniversary in December. They have 4 daughters , 4 granddaughters and 4 grandsons.