The Greatest Challenge Lies Ahead: Update from Harold Laudien and Kirsten Braley
I was excited to see the calendar flip to September this year because it meant I was only a week away from participating in my first full IRONMAN race as a Team PH supporter and patient advocate. My goal of striving to tolerate physical challenges has been achieved, and I have enjoyed this test of endurance. A wonderful extended weekend in Madison, Wisconsin, ended with a long, memorable day with me completing the IRONMAN Wisconsin in 12 hours and 17 minutes, a top quartile finish. While the entire day was filled with emotion, the last mile was particularly moving as I ruminated on Team PH and all the patients I see as much more durable than me because they have the perseverance to fight a lifetime of physical challenges.
This year’s races are not over. In November, I will participate in the Florida Xtreme Triathlon, a three-day, 311-mile triathlon across the state of Florida. I will continue to push my physical and mental limits in my pursuit to support my Let Me Be Your Lungs partner Kirsten, help Team PH, and show there are no limits!
Kirsten has been feeling stable for the past few months. Her most recent update from September can be found below.
My fundraising is under way, and we have had great success already. If you are able to commit yourself to assist the Unmet Needs Patient Impact Fund for Team PH, please donate on my personal page and help push us to our goal of $50,000. The ongoing support and encouraging messages are extremely helpful as well. Thank you!
Kristen’s Update
Yesterday, I spent a very full day at Hospital of the University of Pennsylvania. It began with a six-minute walk test, in which I set a new PR of 1,688 feet. Then I had a pulmonary function test, in which I again set a new PR. Neither test was dramatically different from April, but they were improvements, and I like improving. I also had a chest CT scan without contrast, which was important to me because my October 2017 CT scan was with contrast, and the April 2018 was without, so we could finally compare two without contrast CT scans. There was no discernible difference between the April one and yesterday’s, so I’m not worse. The doctor still sees air trapping and cysts in my lungs.
After lunch, I went to see Dr. Patel, my interstitial lung disease (ILD) specialist, who told me she had presented my case at a conference of ILD specialists. The group agreed I have ILD, but they weren’t able to pinpoint the cause of it. For whatever reason, my lungs were the first manifestation of whatever underlying disease is causing my ILD. It could be years before other body parts show symptoms that would help identify the cause. Or, as Dr. Patel pointed out, if blood testing methods improve, we might be able to find the cause through a future blood test. In the meantime, I will reduce my prednisone to 7.5 mg for a month and then to 5 mg for the following month. She warned that the reduction in prednisone might cause the unknown underlying disease to present new symptoms. Maybe I’m crazy, but that doesn’t bother me because I’d like to know what is causing this.
I am supposed to watch my fluid intake to 64 ounces. I was really good about tracking it, but got cocky when I didn’t notice my body ever retaining fluid, so I resumed drinking as much water as I wanted. Despite not retaining fluid in my legs or abdomen, Dr. Patel looked at my neck and called me out my fluid intake.
I had an echocardiogram in the afternoon. I’ll have to wait to hear if there was anything of note that shows up. Perhaps my failure to track my fluid will show up in the echo.
In a nutshell, I am stable. I’m glad to be stable. I met a woman yesterday who was six months post-lung transplant. She had pulmonary hypertension, too. Hers was caused by a hole in her heart. She was so pleased with her Penn experience. Meeting her reinforced why I am trekking there for these appointments. If I end up needing a new set of lungs, Penn is where I will want to go.
The next big tests will be in December.
As a public service announcement, I encourage anyone 50 and older to get the shingles vaccine. I had shingles in April, and I am still itching where my shingles were located. If there’s a chance the vaccine could prevent you from getting shingles or lessen the symptoms, it would be worth its weight in gold.
