Grateful for my Care Team: Daniel Kolopajlo
I’d like to take this time to share how my team of professional nurses and doctors have impacted my life.
I have been so fortunate to have an incredible team that has done everything imaginable to keep me healthy. I would like to be very candid, and say that my “team” is headed by my lovely, devoted, smart, encouraging wife and overworked caregiver, Beth. She’s been asked numerous times if she was a professional health care provider. The research she committed and gave to all of the doctors and nurses has had an overwhelming impact on my health and well-being from the time I was diagnosed.
Following my idiopathic pulmonary arterial hypertension (IPAH) diagnosis in August 2011, I was able to get into the pre-lung transplant program at UPMC, Pittsburgh in December 2012. Dr. Patricia George and her staff evaluated my condition. The team came to the conclusion that it was too early for transplant, but would continue to treat me.
The UPMC Cardio Pulmonary team developed a plan to get me through some very trying health issues. They never said no to me when I needed both of my shoulders replaced. They organized a team to get me through both surgeries, making sure that all the professionals knew what to expect and what to do if a problem did occur.
Dr. George and her nurse Jessica Romainas, helped me to participate in a few of Dr. Marc Simon’s pulmonary hypertension drug studies. Those studies helped me get temporary lowering of my mean pulmonary arterial pressure. Which ultimately, gave me a better quality of life. My quality of life was always a priority of every member of my team members.
Dr. Michael Risbano took me as a patient when Dr. George left UPMC to start a new journey in Denver. Dr. Risbano and Jessica continued to work with Dr. Simon and his research coordinator Mary Kunkle. I got into another study for rapamyacin. This study, I was told that my participation was greatly helpful in getting proper dosing for others that were participating in the trial.
Finally, as I grew more symptomatic, the team of Dr. Risbano and Dr. Simon came to the conclusion that my condition was to the point where I would be listed for transplant.
They coordinated with the transplant team, and started preparing everything I needed to be listed. I had to get several vaccines and other tests before UNOS would put me on the list for double lung transplant. I was officially listed in February, 2019. On April 15, 2019 I received my first of several calls for lungs that ended in what is referred to as dry runs. On July 3, I received my fifth and final call. The lungs were determined to be viable. My double lung transplant surgery began around 4 p.m. on July 3rd and finished around 2 a.m. on July 4. After a few setbacks, I was discharged from the hospital on July 26 and immediately transferred to rehabilitation. On August 8, 2019, exactly five weeks after surgery, I was discharged home and began my post PH and double lung transplant journey.
I will celebrate my second lungiversary July 2021. Transplant life is certainly a different journey, but life is so good, thanks to the diligence and care of my doctors and nurses.
