January 9, 2020

We spent the day at Northwestern starting with a Pulmonary appointment and ending with the Patient Forum. Dr. Tomic updated Greg’s records and will be refiguring his Lung Allocation Score (LAS) due to his increased oxygen use and the upper respiratory infection he has had since returning home on December 13th. He also had Greg do another chest X-ray and EKG today to make sure the bronchitis was cleaning and that his heart function was the same. Whenever you have pulmonary disease it significantly stresses the heart muscle.

We have also been advised going forward that if Greg must go to our local doctor, urgent care or ER, that the Lung Transplant Team be consulted. They will determine course of care. If at all possible they would like us to come to Chicago. Greg’s lung function is so compromised that we need transplant specialists involved who are going to be more urgent in their response. Greg will also begin taking an antibiotic by mouth 3 days per week as a preventative measure. It may not stop a full blown infection ie pneumonia, bronchitis but it should keep him from having to be hospitalized.

Our afternoon was spent at the patient forum where there is a full spectrum of attendees. Those like Greg in the listing stage, patients post transplant and caregivers. We had several post transplant patients today and one gave Greg the biggest smile. He saw Greg’s Titleist hat and told him he too was a golfer and was 4 weeks post-transplant. The team told him he would likely be able to swing a golf club in 3 months! We also learned a lot about the things that are typically encountered once they were released from the hospital. There is just so much to learn and manage from the caregiver side. Many described the need to have systems in place for communication, medicine dosing and changes, lab days, etc.

All in all Greg is doing ok and we are trying to find a new normal. We have had multiple calls with our insurance companies (health and disability), the transplant team, our and our local pulmonary team. Our go bag is ready and we have our phone tree set so that we don’t have to worry when the time comes.

Thank you, thank you, thank you to each of you for sharing Greg’s story, donating, calling, texting and showing up. We could not do this without our village.

-Tawnya

December 26, 2019

Last Wednesday we met with Dr. Bharat, the thoracic surgeon, and his team to discuss the specifics of the surgery. Dr. Bharat has confirmed that Greg will have better survival odds with a double lung transplant. There is a 7% difference in the 5 year survival rate. However, if the perfect single lung becomes available, he would give Greg that option as well.

On Friday morning (December 21st), the team confirmed that Greg will be put on the transplant list upon final approval from our insurance company. Given the holidays we are still waiting for that call!

Greg, unfortunately, has been sick since returning from Northwestern on the 13th. He started his second round of antibiotics today and a chest x-ray confirmed bronchitis. He is doing his best to rest! Fingers crossed this round of meds does the trick and it doesn’t get worse.

We will update as soon as we are officially listed.

December 13, 2019

We are home from Chicago and very happy to be here. Greg is not feeling well, running a slight temp and waiting on our team to call us back.

The heart Cath went well and there are no major blockages to be concerned with. His pressures on the right and left side were in line with someone with advanced lung disease. The lung perfusion tests showed that there was equal damage to both lungs. We are still awaiting the results of his Pulmonary Function Test, Bone Density, and all of the blood work (30 vials worth!!!!).