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.