(Originally published on 9/18/14 on cotaforjensh.com)
Today marks Jens’s 4 month mark with new lungs! We are happy to report that we walked 4 miles! The neuropathy he’s still experiencing left his feet feeling pretty sore for the last part, but he did it!
As promised, in this edition of “Before & After,” we’ll share some of the changes to a few of his organs.
Skin- Due to some of the drugs he takes, as well as some other risk factors, Jens is at an extremely high risk for developing skin cancer. He has to be very careful with sun exposure. His new favorite wardrobe pieces are some SPF shirts he’s received as gifts from friends and family. We hope they work, as they look really nice!
Since the transplant, we’ve noticed a change in Jens’s skin. His skin is a little softer, and we can tell that it’s a little thinner. There are times when I notice what looks like sweat beads on his face, but there’s not anything to wipe off. This “thin skin” is also a lot more sensitive when it comes to bruises and cuts. For example, it’s a lot easier for him to cut himself shaving. He also nicked his leg a few weeks ago, and due to this thin skin and the immunosuppressants, it has taken much longer for this small cut to heal.
Jens took off his gloves after pulmonary rehab. You can see a BIG difference in his hands! His left hand was super sweaty and wrinkly, while his right hand was just a little sweaty from being in the glove.
Stomach- Jens had been on steroids to fight infections before, but he only took them for shorter bursts of time. Since the transplant, he is on a lower, but steady dose of Prednisone. A side effect of this medicine is that Jens has a large appetite. While in the hospital, he had digestive issues, so we never really witnessed this until a few weeks after we got home. He is known as “hungry, hungry Jens” most of the time! He could probably be a serious competitor in a food eating contest these days- no joke!
"Hungry, Hungry Jens" is never full!
Unlimited chips and salsa... a Prednisone patient's best friend! :)
Pancreas- The transplant helped with many of the respitory effects of Cystic Fibrosis. However, Jens still has many of the same digestive issues he had before the surgery. Before eating, he must still take enzymes to help his body digest his food. His body does not produce the enzymes naturally, so he has to supplement any snack or meal with 6-7 of the enzymes (Creon).
Endocrine- Prednisone can also affect Jens’s blood sugar levels, He’s had to monitor these since the transplant. We found out today that he needs to continue doing this at various meals, and he will probably need to see an endocrinologist to make sure that his levels are where they are supposed to be. Some CF patients have CFRD (CF-related diabetes). Jens has never had this, and hopefully the medicines do not cause additional problems down the road. Right now, we’re not sure of the long-term effects of this.
Heart- Prior to transplant, Jens’s resting heart rate hovered in the 110s. This is higher than your average person’s resting HR. While exercising, this number could soar into the 130s-140s. Post-transplant, Jens’s heart rate is usually 90-100; while exercising, it typically goes 120-130.
Kidney- Due to some of the medications he is on after transplant, his creatinine levels are closely monitored. Some transplant patients experience issues with this, and some must undergo dialysis. The harsh medications used to combat rejection can cause chronic kidney problems over time. Thankfully, we have not experienced anything like this yet.
Liver- One of the questions we are most often asked nowadays by friends is if Jens can have a beer with them. Many of you know that Jens has not had any alcohol for about 6 years, as alcohol could seriously interfere with more and more of the medications he had to take. Right now, some of the medications Jens is on prevent him from having any alcohol. In the long run, we’ve heard that it would be okay to have a beer a day. However, they severely warn about “saving” drinks to use on one day; all of that alcohol at once plus all of the medications he is on for life could cause very serious problems in his liver and other organs. Root beer it is!
Lungs- As most of you know, Jens had difficulty breathing prior to transplant. He wore oxygen every night while sleeping, during exercise/activity, and as needed throughout the day at rest. The Pulmonary Function Test (PFT) measured his lung function at 16-20% prior to surgery. He also did over 4 hours of inhaled medicines and other breathing treatments every day. Missing a treatment was not an option.
No more vest! Jens singing/vibrating through a treatment on his birthday last year.
While recovering in the hospital, he was weaned off of the oxygen within a few weeks, and we were able to return his oxygen tanks and equipment once we got home. He still does breathing treatments to continue to help clear the airways and prevent infections. He no longer does time on The Vest. He is currently doing albuterol and hypertonic saline inhaled twice a day. If he were to miss a treatment now, it’s not as concerning, since it’s more preventative versus necessary. His pulmonologist takes a proactive approach during the first year, especially, and he will add inhaled antibiotics every other month to the breathing routine. It is sometimes tough for him to keep doing these, but we try to stay positive about it, knowing that if we are diligent this first year, he may not have to do them longer. (I say “we” because these treatments can sometimes take up our time spent together or doing more fun things.)
His first PFT from the week after he was released from the hospital measured 75%. Two weeks later 77%. Today, we are THRILLED to share that his PFT measured 93 percent! (80% is considered normal.) We knew it was on the rise, and at his last test five weeks ago, he was already at 79%. In typical Jens fashion, he wanted to wait to share this amazing news until he was “officially” normal.
His latest PFT results are proudly hanging on our fridge!
4 months ago, I witnessed him push through the difficulty of breathing on his own to be able to get the ventilator removed. He worked so hard and persevered through so much. 4 months later, I’ve watched him continue to persevere through new routines, odd side effects, and more. He diligently goes to pulmonary rehab twice a week, every week and is always pushing to do more! As he said after hearing these results, “All of this hard work is paying off… Next step: 100!”
