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!

Before and After, Part 1

(Originally published on 8/18/14 on cotajensh.com)

Today marks 3 months after the transplant. We were talking this weekend about how things are different today than they were before the transplant, and even different from various points in the recovery process. There is still so much that is changing on Jens’s body, and there have been things happen that we didn’t expect. Here’s a little taste of what’s changed and what’s stayed the same, starting at the top…

Hair- Jens needed a haircut badly when he got the call. In fact, we had planned to go on that Saturday! His hair was out of control in the hospital, but we took care of that the week he was home. It’s about time for another cut already. We haven’t seen much change in the texture or style of his hair. 

Eyes- Jens experienced hallucinations in the hospital shortly after the surgery, as he began the immunosuppressant meds. He saw YouTube videos streaming up the cabinets in his hospital room and even 2nd grade writing on the walls. This irritated him for a while because he couldn’t shut his eyes to stop the visions. The hallucinations have subsided, but he still has extremely vivid dreams every so often. He had more of these when he first started the immunosuppressants. The dreams are extremely realistic, and when they wake him up, he feels like he’s been right in the middle of them. The meds have caused minimal side effects to his vision/clarity during his waking hours; at this point, he could handle “operating heavy machinery” and driving. 

Ears- His hearing has not been affected by the meds, so there has been no change there. 

Nose- Prior to the transplant, Jens had chronic sinus issues in addition to CF. If he walked down the stairs, his nose would start running. The “drip” combined with a cough while performing movements made walking, grocery shopping, and exercising a more tedious and messy affair. Jens previously used an entire box of tissues every couple of weeks. His nose did not exhibit much, if any, drainage for the first few months after transplant, but we have noticed a little more production the past week or so. 

Mouth- You may remember reading about a metallic taste Jens experienced when he began eating again after transplant. After a few weeks, this went away. Jens says there are still things that don’t taste “normal,” but the metallic taste isn’t the cause. (We think his tastes may return, but some things just might taste different now.) 

Jens struggled taking his pills in the hospital. We discovered the trick of taking them with applesauce to help get them down. This was mainly caused from the tubes that were in his throat and esophagus. Before surgery, he could take his coated enzyme capsules by just using his saliva. He needed applesauce for those “ formerly easy” ones in the hospital, graduated to taking them with water around the time he came home, and now can take them occasionally without water. 

Prior to the transplant, Jens produced a lot of sputum (mucus) and had a fairly regular cough. Many of you know he used empty water bottles to contain the sputum, and he would fill 1-2 each day. The “filled” bottles were heavy, as the spit contained a lot of thick mucus that came from his lungs. Nowadays, he has minimal spit, with most of it being clear and maybe a few coughs of sputum (mucus). If I had to quantify it, he probably produces about 3 ounces a day. 

If you’ve talked to Jens on the phone in the past 3 months, you may have noticed that his voice is a lot stronger than it was. This is something I’m not sure I recognized at first, until someone pointed it out. He coughs a lot less as he talks (which is nice for his phone partners, as his coughs were strong and LOUD in the phone). His cough has been a lot weaker, due to the discomfort in his chest and the muscles needed to help cough. Also, because he is not coughing as much each day, his abdominal muscles have weakened. Bye-bye 6-pack abs! (He will have to do sit-ups like the rest of us, once he is able to.) 

That’s it for Part 1. Stay tuned to hear more about how his double lung transplant affects the rest of Jens’s body.

Wait- he has WIRES in his chest?!

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

We have some great news to report from Pittsburgh... Jens's bronchoscopy (last Friday) showed no rejection! Now, it is still a possibility that his body could still reject the organs. You may remember that he had mild rejection last month, which was treated with a high dose of steroids. It was good to see that the treatment worked, but we know that he may need more treatments in the future if rejection occurs. We are still waiting on all of the cultures to come back to see if there are any infections (bacteria, fungi, etc.). If these come back negative, the doctors may take a few months "off" of bronchs/biopsies (unless Jens shows signs of rejection sooner).

With this news, they have said that he can go to a baseball game. Although, Jens is currently hoping that the hometown Pirates hit a slump, so his beloved Reds can gain some ground in the standings...

Jens is still struggling with chest pain. We learned last week that he has some wires holding his sternum together. They never told us this at the transplant classes or at any point before last week, so we were surprised that some pokey wires could be causing some irritation. We met with the cardiothoracic surgeon today, and he shared with us that after Jens's transplant, he has since changed how he positions the wires in people with thin sternums (like Jens had). While it was neat to hear that Jens's case may be helping others, he was kind of bummed that he has the "old" way of wiring, which may be causing this pain. We're told (once again) that the pain should subside with time and that he "looks great."

Jens eating a favorite "snack"

Another reason that they've given us as to why he is still experiencing pain is that there is not a lot of "cushion" on him in that area of his chest. Since getting home from the hospital, we have really tried to help Jens get some good weight on him. He's probably gained 5 or so pounds since then, so he is not back up to his pre-transplant weight yet. The past few weeks, he has had a REALLY great appetite, and we're fitting in 4-5 meals per day. Hopefully, all the eating (and work in pulmonary rehab) will pay off and he will gain good weight and muscle.

Stretching at pulmonary rehab 

Thanks for continuing to follow along! If there's anything you're curious about, shoot us an email/text/call and maybe we'll blog about it. For now, we're going on a walk to enjoy the cooler night temps here in Pittsburgh!