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Jun 30, 2016 Latest post:
Jul 19, 2017
Dear friends and family,
This website is devoted to Doug's journey to health. It is a way for us to communicate with all of you in the days leading up to his surgery and during his recovery.
On April 12, 2016 Doug was diagnosed with C-TEPH, chronic thromboembolic pulmonary hypertension. This is pulmonary hypertension caused by blood clots that form in the veins in the body and travel to and clog the arteries in the lungs. Once lodged in the lung arteries, they can cause more clots to form (thrombosis) and add more resistance to the blood flow through the lung. The doctor thinks that some of the clots are more than a decade old! After diagnosing the C-TEPH they promptly did a doppler of his legs and found a small blood clot is his left calf. They are not sure why he produces these clots but have an inkling that it may go back to his days when he was heading up Cerner's global business and flying thousands of miles each year.
Doug first presented with symptoms in mid-September 2014 upon our return from a trip to China (there's that long distance flying again). He found himself feeling short of breath upon exertion. He also developed a bad case of bronchitis that took him a long time to shake. He got a second bout of bronchitis in early 2015 which again really took hold. After this second case our primary care doctor, Dr. Christifano, then referred him to a pulmonologist at KU Med, Dr. Crosser, in March of 2015. Dr. Crosser ordered a chest x-ray and some other basic tests which at this point he passed with flying colors. The doctor didn't think he was very sick because at the time Doug was still doing road biking and appeared the picture of health (and he still looks healthy!) Dr. Crosser said he figured it was RSV, a respiratory virus which can take months to get over.
Fast forward to March of 2016. Doug had suffered yet another couple of episodes of bronchitis in the preceding months and his symptoms were getting worse. Even something as simple as climbing a flight of stairs or the incline of our steep driveway would make him pause to catch his breath. After very much nagging from his loving wife (me) and subsequently, Dr. Christifano, he made an appointment to return to the pulmonologist, Dr. Crosser. Dr. Crosser basically said - uh-oh, this isn't good that you're back. So he pulled out the stops and ran even more tests. The test that pointed toward the diagnosis of C-TEPH was a Ventilation/Circulation scan. A pulmonary ventilation/perfusion scan involves two nuclear scan tests to measure breathing (ventilation) and circulation (perfusion) in all areas of the lungs. The scan uses radio isotopes and Doug's lungs lit up like a Christmas tree. He has multiple clots and many of them are in the pulmonary artery wall. He also had a heart catheterization and a pulmonary angiogram which helped confirm the diagnosis.
Once Doug was diagnosed with C-TEPH, Dr. Crosser passed the baton to one of his partners, Dr. Satterwhite who is a vascular pulmonologist. Upon being assigned Dr. Satterwhite we discovered a very happy surprise. Dr. Satterwhite's head nurse is Amy Heidenriech who is a friend of ours that we met through Don and Jean (Doug's twin and wife).
Pulmonary hypertension is high blood pressure in the pulmonary artery. This is different from the systemic high blood pressure, the kind that is measured with a blood pressure cuff. PH is dangerous and ultimately life shortening and Doug was immediately put on a PH drug, adempas (featured on TV ads that I never even noticed before!) He's also on coumadin, a blood thinner, and will be for life.
Doug is lucky. C-TEPH is the only form of PH that is curable. The tricky thing is you have to go through a mega-intense 10 hour open-chest surgery to have the clots removed to ultimately be cured. This surgery is only done at a couple of places in the U.S. and Dr. Satterwhite recommended the best - University of California at San Diego's Hospital. We had to wait a few stressful weeks to find out if he would be accepted and he was. Surgery is scheduled for Thursday, July 19. He has to show up on July 12 and will be spend 4 days doing a series of out-patient tests; repeating many of the same ones that were done in April just to double-check that nothing has changed.
Doug is currently not allowed to fly. We will leave to drive out there on Thursday, July 7. We are going to take our time on our way out there and will arrive on July 11.
I plan to make journal entries when there is anything new to report. My understanding is that you will be sent an email telling you there is a new entry. I promise that future entries will be much briefer!
Doug and I are grateful for all of the support we have both received to date and we say - keep it coming! Any and all, prayers, positive thoughts and loving feelings are so appreciated.