Before and After, Part 2

(Originally published on 8/31/14 on cotaforjensh.com)

We talked about his head last time, so it’s only fitting that this post features his shoulders, knees, and toes. :)

Arms- During his 10 hour surgery, his arm were propped over his head. Try holding your arms above your head for 10 minutes, let alone 10 hours! It was very tough for him to lift his arms while he was in the hospital. Even 3 months later, he still has a limited range of motion in his shoulders and upper arms. His armpits are sore, which is a combination of the arm positioning as well as the incision in that area. 

Post-surgery, patients are not allowed to lift, push, or pull over 10 pounds for at least 3 months. However, since Jens has continued to experience pain and discomfort in his sternum, the transplant surgeon has extended this limitation until we see more progress in the sternum “healing.” In pulmonary rehab, Jens lifts 3 pounds weights to do bicep curls, tricep pulls, and shoulder shrugs. He is able to do some other “arm-r-cise” motions without weight, but these exercises are still very tough. 

He can't shoot just yet... 

Hands- He is currently dealing with some side effects of what we believe is neuropathy. His left hand becomes very cold at times, and can also be clammy. He experiences tingling in his fingers on his right hand. It is very evident when you hold both of his hands simultaneously that something is “off.” He is on some medications for these symptoms, and it is undetermined at this point if this is permanent or if it will get better in time. 

A couple of weeks ago, we noticed some ridges in the middle of his fingernails. We asked the doctor about this, and it turns out that his nails are growing back stronger than before. This is due to more oxygen reaching his extremities. I wish we had a “before” picture of his fingernails, which were fairly blue and thin. Many CF patients fingers are “clubbed,” and Jens had some of this occurring before. However, the transplant has caused oxygen in his body to reach his extremities more efficiently. 

New fingernail growing

Immediately after transplant, he began taking anti-rejection medicines. One of the side effects of this drug is tremors. He had trouble holding eating utensils, typing on his cell phone, and writing while in the hospital. He still experiences the tremors from time to time. 

The best thing we can do for his hands is to keep them as germ free as possible! This was important pre-transplant, but it is vital post-transplant. Jens’s immune system is suppressed, so getting a cold could be life-threatening. Hand washing is in full effect around our home, as well as for the people that are around us. Jens wears medical gloves at pulmonary rehab, and when we visit museums, he avoids touching anything. Germ killing is a huge priority in our life right now, so don’t be surprised if you come to visit and we’re a little obsessed about it; we have to be! 

Legs- While he was in the hospital, his leg muscles atrophied some. Jens is not shy about telling others that one of his favorite features is his “killer calf muscles.” We saw these take a hit after surgery, but he has worked hard in pulmonary rehab to get them back in business. He has been able to walk longer distances thanks to the new lungs, so he has worked hard to continue to build up the strength and endurance in his leg muscles. In pulmonary rehab, he works out on a Nu-Step machine, walks on the treadmill, and does other leg exercises. He’s building up to be able to ride a bike. 

Feet- His feet have also experienced similar symptoms of the neuropathy as his hands. The tingling and burning sensations can cause him discomfort as he walks, so there are times when he doesn’t feel like walking as much because of that. 

In our next edition of “Before & After,” we’ll share about how the transplant has affected some of his organs, especially his lungs!