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ApX Fan Needs Lung Transplant or a Miracle
Fri., Apr. 5. 2024 3:44pm EDT
Greg Segda is a longtime ApologetiX fan in Dayton OH. HIs wife, Nicole, also became a fan but is in need of a lung transplant or a miracle. Please pray for her. We know them both personally and have been praying for them for a while now, but we asked Greg to share Nicole's story so we could share it with other ApX fans and ask them to pray. Here's what he said:
Nicole started having trouble breathing on August 13, 2015. After several visits to the ER and a long hospital stay, she was diagnosed with a rare autoimmune disease called antisynthetase syndrome. This disease can cause many problems ranging from raynaud's syndrome, dermatitis, lung disease, migraines, etc. In Nicole's case, it attacked her lungs. By October of 2015 they were able to get things under control using a "chemo-like" infusion of rituximab.
Thankfully, with the treatment and the three-month infusions, she was able to go into remission. By January we were able to take a cruise to celebrate my best friend's 30thj wedding anniversary. By the end of 2016, we were blessed again, though we didn't know until late march that Nicole was pregnant. We were going to have our first child! Through a lot of prayer and, I believe, God's protection, Nicole was able to continue to receive her treatments while carrying the baby.
Fast forward to September 19, Eleyna was born and Nicole was in remission. There were some concerns when COVID hit, but we actually came out of the pandemic for the better. Things were going good until February of 2021. Nicole started having some pain and trouble breathing. At first we didn't think too much about it. It was about time for her next round of treatments (which we always prayed would be the last time she needed them).
This time, she had COVID pneumonia and her pulmonologist told her that she had broken through. In other words, the rituximab was no longer working. Her pulmonologist wanted to put her back on the high dose of prednisone. She didn't want to do it. Prednisone in doses that large has a number of adverse side effects including weakening of bone structure, increased weight gain (cushingoide) and acid reflux to name a few. She had already battled back from all of that.
Her pulmonologist told her that they would not let it get to that point again. The problem: He retired not long after that appointment. We reached out to the new pulmonologist. He never got back. He never tried to reach out of his own accord. By the time we were able to finally get in touch with the new pulmonologist, it was May. Three months had gone by and Nicole's health had deteriorated greatly. In hindsight, I should have been more adamant that we find a new pulmonologist.
Now we were all playing from behind. After another lengthy hospital stay and another communication breakdown with her pulmonologist, we did finally get a new one. He took one look at Nicole and asked if she would be opposed to a lung transplant. He said that it should have been done a long time ago. Antisynthetase syndrome has about a seven year life expectancy. He started aggressively working with us to get her on the list.
Her condition dropped quickly, though, and by June 30 she was hospitalized again. Since June 30, 2023 she has been under some kind of medical care nonstop and really since May of 2021. In September, I talked to one of the hospital pulmonologists about having her transferred to IU. They had her referral in hand and believed that she would be there until the transplant was done. He refused, stating that she was "not in bad enough shape".
On around September 13, she went on the ventilator. On September 15, the local hospital realized she needed a higher level of care. We got our trip and Nicole got her helicopter ride. She got there, and IU determined that she was too weak for the transplant. She had to be vented a second time for two weeks. For most people, October 7, 2023, is a day that will be remembered for the massacre of thousands of innocent Jewish people at the hands of a terrorist group called Hamas. For me however it goes down as a very hard weekend for our family as life events hit home.
The day before, we were called in to make a decision about Nicole's life. She had been on the ventilator for a week. We had been rejected for the lung transplant by several hospitals including Indiana who had told me that if we got her there they could get her on the list.There was one last possibility with Cleveland Clinic. The doctor said that if they turned us down, Nicole would not have any quality of life and his recommendation was to take her off of life support. They would make her comfortable.
The doctor's belief was that most likely she would expire in five or six minutes after being taken off of life support but if she was strong, maybe a few days. That Saturday or Sunday night, Nicole started to come around. Even though she was still on a ventilator, she started interacting with us. One day, as her dad stepped out of the room, I said I was going to walk with him. Truth is I had something to say: "I think we made a really stupid decision on Friday." He agreed and said that he hoped that is what I was going to say. He was having the same thoughts.
Before the doctors came back with any news from Cleveland Clinic we told them that we were backing out of the decision that we made on Friday. Cleveland did come back with a no, but her dad and I had a new fire lit within us to start reaching out to every hospital in the country that does lung transplants. With rejection after rejection coming back, we started to wonder how long we could keep her on the vent. Another week passed and it was decided to give her a trache. This incision in her throat would allow them to bypass her nose and mouth all together getting the oxygen flow straight to her lungs.
Nicole has since been able to get stronger, but we are stuck in a pattern. She goes to rehab, gets stronger. Something happens, she ends up back in the hospital for three weeks, back to rehab and repeat. Our prayer is that she is able to come out of the hospital, get into a good rehab facility and build up enough strength to qualify for the list.
Unfortunately, the Mayo Clinic has determined that she wouldn't be a good candidate and are declining to move forward. We've still got a lot of possible locations out there including OSU, Cleveland Clinic, IU, UPMC, Barnes Jewish, and Temple. If you would happen to know of any places, please let us know.
2 Timothy 1:7
For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
Thank you for your prayers!
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