The last 5 years…
Jens spent the afternoon New Year’s Eve (2008) in Nashville cheering on the Vanderbilt Commodores to their first bowl victory in 53 years at the Music City Bowl. However, that bitterly cold day marked a significant turn in Jens’s health when he spiked a 103 fever. At that time, his lung function was around 30%. His doctors at Vanderbilt (VUMC) decided to perform a bronchoscopy to determine why he was declining. Jens is a fighter, though, and so he eventually battled his way back to his baseline after those events.
Later that year, Jens would experience more health difficulties. In mid-August of 2009, he began to experience gut-wrenching pain while at work. He went to the hospital, was diagnosed with pancreatitis, and spent about a week there without being able to eat. After he was discharged, he was put on a no-fat diet for a while. Those of you who know Jens understand how awful that is, since he is typically on a high-fat, high-calorie diet to keep his weight stable. Pancreatitis has been said to “bring the toughest of men to their knees,” so you can imagine the pain he experienced.
September 3, 2009 is a memorable date in Jens’s life. In the early afternoon, he went down to the post office in his office building and quickly realized he was coughing up blood while discussing stamps with Sam, the mailman. This continued as he went back to his office, so he drove himself to the ER and it was decided that he needed to have an embolization to stop the bleeding. They placed a PORT during the same procedure, since he had needed IV antibiotics on a more regular basis. He spent three weeks at VUMC recovering while developing several complications, including:
- extended headaches and fevers
- swelling of the legs/feet (put on diuretics to help with fluid)
- pancreatitis (again)
- major weight loss
- bad reaction to an antibiotic, leading to kidney trouble
- severe lung function drop
Once he was stable and well enough to travel, he went with his mom to Philly so that he could have her around to better support him during this time. He logged a weeklong stay at the UPenn hospital to continue to recover. The doctors there discovered that his PORT had been placed too close to his heart, so they had to redo the procedure at that time, as well.
In October, Jens went to the University of Pittsburgh Medical Center (UPMC) for his first lung transplant evaluation. This was a scary time for Jens, since this was the first time he went through this evaluation to hear about the transplant process. By the end of the evaluation, it was determined that he had made enough progress since his difficult month of September, and so he left Pittsburgh without being listed. He returned to Philadelphia to continue his recovery for the remainder of 2009.
Jens returned to Nashville in January of 2010. He was on IV antibiotics, and only able to work part-time for a few weeks to try to regain strength. An avid hockey fan, Jens took his roommate up on an offer to go with a friend who had extra tickets to the Preds game. It was that night, January 30, that Jens and Abby met for the first time. They went on their first date (to a Vanderbilt-Tennessee basketball game) on February 9. Jens traveled with his brother to Pittsburgh that summer to check in with UPMC. Jens again had made great progress and was not listed as a candidate for transplant at that time. Minus a few stints on IV antibiotics, he had a relatively uneventful (health-wise) 2010.
In the summer of 2011, Jens’s PFT’s actually went up a bit. He had been able to spend the summer travelling and being active. However, in August, he started to feel bad again. He battled for August and September, and on September 23, he went in for a chest x-ray. The doctors noticed that Jens had a collapsed lung. He was admitted to the hospital for X days to “reinflate” the lung and recover. This was the first time Abby had ever seen Jens in the hospital; it would not be the last that fall. One Sunday, Jens began to cough up blood again. He went to the ER, but the doctors could not determine where the blood was coming from. After spending a few days in the hospital, he was released. But, about a week later on October 20, he was able to get to the hospital in time after coughing up blood so that the doctors could tell where the blood was coming from. He had an embolization performed that Friday on his Mom’s birthday and spent the next 11 days in the hospital. During his time there, he developed pancreatitis again, and was again forced to battle through the pain while on a no-fat diet. No fat= no fun. Because of all of the difficulties of this year, Jens went to Pittsburgh after Thanksgiving to be evaluated, for the fourth time, by the transplant team. However, the doctors felt that Jens had made good progress during his recovery and decided to continue to monitor his health, without listing him on the active transplant list.
Jens continued his good progress and he felt (relatively) well enough that he did not feel the need to travel to Pittsburgh for an evaluation in 2012.Thankfully, this year’s biggest/only health scare was some severe back pain Jens had around his birthday in August, requiring a weekend ER trip for some pain medicine. Coughing, which is hard to avoid during his treatments only aggravated his pain, so the doctor’s prescribed some muscle relaxers.
In January and February of 2013, Jens struggled again to be healthy enough to get off IV antibiotics. The doctors at VUMC recommended that he go to UPMC for another evaluation, his fifth to date. Jens’s mom and Abby accompanied him on this trip in late March. He went into this knowing that he probably wouldn’t be listed, as he showed some improvement once he stopped IVs in early March. The doctors there stressed that he should continue to monitor his “quality of life,” and that he should weigh the risks of the transplant against the “quality of his life” outside of his health regimen. The discussions Jens and his caregivers had post-evaluation were hopeful: everyone thought that he was maintaining good progress and that the transplant adventure was still a few years away.
2013’s most anticipated event, however was celebrating Jens’s 30th birthday! As a child, the life expectancy for people with CF was not even 30 years old. (The average life expectancy is around 38 right now.) Every birthday is a special one, but this one was a magical milestone. Many friends and family members contributed to a 65-minute birthday video, with their memories and best wishes for Jens. It was truly a day to remember! However, as the year progressed and the temperatures dropped, Jens struggled. Winter is always tough, as the “extreme” temperatures tend to aggravate him more. He went on IVs and did not see much difference.
We learned at the beginning of 2014 that his lung function had dropped to about 16%. He currently spends about 12 hours a day hooked up to IV antibiotics, in addition to continuing his 4+ hours of breathing treatments each day. The extreme cold weather of this winter has not helped him, either. He feels it is too risky to be off of IV antibiotics right now, and so his overall quality of life has decreased drastically. Jens and his caregivers are discussing the best plan of action in regards to when to go for an evaluation at UPMC, knowing that a double lung transplant is in the nearer future than anticipated.
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