Pulmonary hypertension and interstitial lung disease can affect many patients with scleroderma. Some cases become so severe, a lung transplant is needed. This is decided by the doctor if a patient has declining use of their lungs or they cannot breathe without oxygen. Once the doctor puts in a referral for a transplant, there are a few other necessary steps to be taken. It can be a terrifying journey to begin, but for many, new lungs equals a new chance at life. Two brave women have chosen to open up their stories to us, and they are grateful for their donor's family.
Gladys
I was first diagnosed in 2003, in the middle of the year. It took a two week stay at the hospital for the doctors to finally diagnose me with dermatomyositis with underlying systemic scleroderma and interstitial lung disease. I was definitely a rare case to them at the time, projected to live only three months in 2003.
My life struggle from that year on was pretty rough, to say the least. My health was going downhill fast. Scleroderma was hardening inside me, with calcinosis erupting all over my pressure point areas, and then my lungs and heart became involved. I constantly lived in the hospital from 2003-2005.
In 2005, I was getting all my testing done to be placed on the transplant list. Hurricane Rita really affected our area and flooded out the selected transplant hospital to perform my transplant, if and when the call came. Fast forward to 2008/2009, I received notification that I was finally placed on the transplant waiting list. By this time I was already in a wheelchair and being fully cared for by my husband. There wasn’t much I could do for myself. After two false alarms, the third call was the one. March 2, 2010 was a life-changing day. I wasn’t going down without a fight and thanks to my angel, my hero, my double lung transplant donor.
After my transplant, within my recovery phase, I noticed that all my issues with autoimmune disorders had decreased significantly. The chronic pain ceased, scleroderma and dermatomyositis practically went dormant, but recently small symptoms have been popping up.
I developed a painful calcinosis sore, which has erupted. My strength was decreased significantly due to my diseases. There are still many things that I struggle with, but I have learned to do it differently than what the “norm” might be. My outside might look good and healthy but what you can’t see is the hardened body parts within me. My back, bottom, elbows, arms, back of my thighs, my hips, all have hardened areas that have minimized my range of motion. Lately, I’ve been using a cane to walk because the calcinosis wants to overtake my hips, stiffening me up. I have tried incorporating light exercise, but it hurts. I’m not complaining in the least, but I want to paint a picture of reality that I still have certain issues. They're just not as bad as before, which I am so grateful for. I am here today, taking it one day at a time. I am eternally grateful and blessed. I just recently celebrated my ninth year post transplant!
Joann
I was diagnosed with CREST in November 1998, my first symptom was Raynaud's. Later on came the GERD & skin tightening with the thickening of my hands. I developed a dry cough which got progressively worse and was on oxygen 24/7. All other treatments had failed. I was diagnosed with pulmonary fibrosis in 2005, which led to me being put on the transplant list on May 9, 2013.
On April 4, 2015, I was standing in the aisle at Walmart, buying last minute things for our family’s Easter celebration, when my phone rang. It was the transplant hospital letting me know a set of lungs were available and to get to Houston as soon as I could. I was stunned. I couldn’t believe what I was hearing. I was scared and happy at the same time. I rushed home to pack, let my family know, and we were heading to Houston within an hour of receiving the phone call.
I received my new lungs on Easter Sunday 2015. Before then, I couldn’t walk across my house, do laundry, or wash dishes. I couldn’t walk up the bleachers at my son’s basketball games without literally losing my breath. Now, my lungs are the healthiest part of me, but the battle with scleroderma continues. I’ve struggled with gastrointestinal issues, extreme weight loss, weight gain, infections, a feeding tube, and having iron so low that I needed infusions. Any time I’m sick, it requires an overnight stay in a hospital. I have regular check-ups as well to check for lung function, kidney function, rejection, and to regulate my medications. It’s my new life, my new normal, and adjusting is difficult, but the the process and journey is definitely worth it.
The hardest thing about recovery was the time spent in ICU. I could only have visitors at certain times and
they would only allow two people in at a time. I have a big family and I wanted them all with me every minute of the day. My husband helped me through it all. He was by my side every minute that he could be, and when he wasn’t, we were both counting down the minutes until he could be in the room with me again.
Transitioning to recovery at home was also pretty tough. In the hospital the nurses took care of me, but at home I was learning how to take care of myself. Basic every day tasks were difficult, learning and taking all the meds was a challenge took a few weeks/months to adjust to it all.
Luckily, I have been in touch with my donor’s family. They connected with me through social media three months after transplant and we have visited each other a few times. If I could say anything to the public about Organ Donation, I would say DO IT. Be a donor. If wasn’t for my organ donor I wouldn’t be here today sharing this with you— the simple things such as walking, talking, laughing, mean so much more when you go through this. It’s a beautiful miracle. Enjoying my life with those I love the most is the absolute best.