(Originally published on 2/3/15 on cotaforjensh.com)
Sorry for the long absence in blogging. I think while we enjoy having everyone’s support, it’s tough to have our whole lives out there for all to see/read about all the time. Forgive us.
Jens carving our turkey on Thanksgiving 2014.
The views from Mt. Washington in December with childhood buddy, Chris Reagh.
We are surviving our first Pittsburgh winter! While we weren’t so thrilled about our neighbor Phil’s prediction of more winter to come, we have been very thankful that- SO FAR- this winter hasn’t been as bad as last year. I (Abby) am especially thankful for the investment I made in a good pair of snow boots, a warm winter jacket, and an awesome snow brush! Pittsburgh essentials! We went for a walk on the first nice snow in January, and Jens commented, “It’s so nice to be able to be out here for a longer period of time and to be able to breathe.” The past few winters have been very cold and were very hard on Jens’ lungs. With his lower capacity to breathe, getting bundled to go out in colder temperatures was exhausting- even before his lungs breathed in the frigid air. I think it’s going to be amazing to continue to experience these little changes, little gifts!
Basketball at the neighborhood court in the snow.
So, how’s he doing? I have failed to post about the super awesome “abdominal binder” that Jens gets to wear as sort of a cast for his sternum. He began wearing this on November 7, as it was waiting for us on our doorstep when he returned home from his November bronchoscophy. Two sidenotes: 1. Jens doesn’t recommend starting to wear a “cast” the day you’ve had a procedure done, and 2. All of the results from that bronch. came back negative- showing no infection or rejection! Yay!
Modeling the binder he wears over a Dri-Fit, and under another shirt every day.
Jens has been experiencing chest discomfort and pain since he came home from the hospital in June. I think I’ve mentioned before the irritation he felt with the wires, etc. As he’s gained (healthy) weight and muscle, the pain was still there. The transplant surgeon (Dr. D’Cunha) ordered this “abdominal binder” to be worn around his chest to stabilize the bones- the best casting you can do for something like that. Jens also had an MRI in December to make sure that the bones were fusing properly, and that the surgeon wasn’t missing anything abnormal with that. Those results came back positively, and he just appears to have a longer time for his bones to heal with all of the immunosuppressant drugs. Dr. D’Cunha ordered Jens to wear the binder an additional 3 months (4 total), and that we’d revisit it then. Jens has seen the binder help to stabilize and to alleviate discomfort, but it’s not 100% yet. Check back in March!
Testing his limits on a rare 50-degree January day in Pittsburgh, while celebrating 8 months!
In November, you’ll remember that Jens’ white blood counts were consistently low and did not seem to respond to the typical “boosts.” In December, they decided to be a little more aggressive with the neupogen doses and other treatments, to minimize Jens’ risk of getting sick or getting an infection. We’ve tread very lightly this flu season, as Jens has not been able to get a flu shot due to these low counts. Thankfully, they came up for 2 consecutive weeks, enough that the doctors allowed us to briefly travel to Texas to be with family on the conditions that, a.) he would continue to get weekly blood work, and b.) we would seek medical attention and/or return to Pittsburgh immediately if something was off. We were excited to leave, but we did so with some trepidation, as we knew we’d be around more people than we have been exposed to in Pittsburgh. (We had a great time, and it was so nice to get to be around loved ones for the holidays!)
Once we got back to Pittsburgh in January, we began to see his white blood counts drop again. They have ordered more aggressive doses of neupogen to try to help boost counts, and Jens has an appointment with a hematologist this week to see if he can provide any additional insight as to why this is continuing to happen.
At this point in the recovery process, they did not anticipate that Jens would still need to get blood work done on a weekly basis. (This is typically a monthly thing at this point.) Along with the blood work results comes last-minute appointments to go in for the neupogen (or other) treatments at the hospitals. One of the transplant coordinators typically calls Jens on Monday afternoons to go over the results of that morning’s labs. If treatment is needed, she’s usually ready to tell us when that’s going to happen. It’s usually scheduled for Tuesday, Wednesday, and Thursday at 11 AM each day. We’ve come a long way to have a “usual” schedule for that, as the first few months we’d get all sorts of crazy days/times.
It can be frustrating that these medical issues still rule our time and plan our days, and we have to continue to think about where Jens was about 8.5 months ago. I’ve had to catch myself a few times and remind myself: “Be thankful that you’re getting dressed and ready today to take him to _______, instead of spending the day at the hospital with him.” Those thoughts creep in, and we can become ungrateful for our current situation. Is it frustrating? At times, yes. Is it inconvenient? Yes!
Anyone who battles any sort of chronic disease often longs for what’s “normal.” We’ve adjusted, flexed, canceled, and more the past few years because of health stuff. We don’t feel “normal” most days in Pittsburgh because we perceive “normal,” as someone who doesn’t have to visit the hospital every week. I’m reminded of some wisdom from a dear friend: UGET2.
We get to have blood drawn/take Jens to get blood work (instead of the ER!).
We get to sanitize the “touched surfaces” in our home today to help keep us healthy.
We get to take walks in the snow.
We get to enjoy a slower pace of life.
We get to put our lives out there because we have a wonderful community of supporters who care and want to know what’s going on.
We get to work on our relationship and enjoy time together every day.
We get to BREATHE!
We get to…
We got to... see our beloved Preds beat the hometown Penguins 4-0!
(More about the “UGET2” mindset from the wise Emily Huff: http://celebrate-2day.blogspot.com/2013/04/uget2.html)
Hiking with the Huffs to celebrate 7 months in December!
