It’s amazing how much strength is lost in just a few weeks. I’ve been nursing an intercostal muscle injury for a few weeks and this morning, I’m just getting back into some light upper body conditioning.
It made me think about the times I’ve had picc lines in either at home or in the hospital and how beneficial it was to keep up the strength exercises during that time. In fact, I believe it’s important to keep up the exercise routine as much as possible while in the hospital and/or with a picc line placed. I thought I’d post a couple picc line videos from the past. Man, I look scary in these videos!
Here are some strength training exercises using a band.
Today the FDA approved Symdeko! This is one of three treatment options on the market now that address the underlying cause of cystic fibrosis. This is very exciting and will benefit many people who live with cystic fibrosis. Read about it here.
No matter what we are going through in this life, we all have so much to be thankful for.
This week, the things that quickly come to mind involve our trip to Cleveland. We got home Tuesday night from Cleveland Clinic. I had some follow up testing as well as appointments with the lung and liver transplant doctors on Monday. I am very thankful for-
A healthy liver. I do not need a liver transplant. The transplant doctor reviewed all the MRIs, catscans, biopsy, and labs that I’ve had over the last 13 months and she concluded that my liver is healthy and functioning normally and not a concern for lung transplantation. Thank you Lord!
Traveling mercies. We drove 1260 miles in four days. I am so thankful that the Lord kept us safe during our time on the road.
A Wonderful Traveling Companion. Jim is amazing and he has the ability to make even a trip to a hospital, not only bearable, but a fun adventure. I am blessed to have him in my life.
Stable Lungs. They are working so hard to keep me going. I am very thankful to have the stability that I do. For reasons only God knows, it is not my time yet to be listed for lung transplant. My lung function is low but it would not be wise for me to go through the surgery yet as the goal is to list at the right time. And the right time is when the benefits outweigh the risks and right now, my health is stable. We go back to Cleveland in June for another follow up.
Vertex Pharmaceuticals has decided which two next-generation correctors to advance into phase 3 development. This means that very soon there could be an extremely effective treatment on the market for roughly 90 percent of people with cystic fibrosis. We are not just talking about treating symptoms here……this option works at the root cause of the disease. This is great news!
We are traveling to Cleveland Clinic next week to have some follow up testing/appointments with the lung transplant program. During our visit to their transplant program in October, we were told that I am a good candidate for their transplant program at the right time. In October, I was not quite ‘progressed’ enough to warrant listing. So basically…… I am sick, cystic fibrosis is a progressive disease, and it is good for me to be followed closely by the transplant program, but I’m not quite sick enough. Since October, as far as I can tell, my health has remained fairly stable. But I won’t really know until I get out there and repeat some of the testing.
I can honestly say that while I am eager to gain some clarity about transplant timing and whether or not I will be recommended for lungs alone or lungs/liver transplant, I’m not worried about it.
In a situation that would typically cause anxiety and worry, the Lord has given me an undeniable peace. I know that God will take care of everything according to His purpose and my good and I’m extremely thankful. He has brought me to this point and we trust that He will continue to take care of all these details. If you could pray for us, we’d appreciate it.
Our small group has started reading the book Crazy Love by Francis Chan. Great read so far and there have also been a few really cool videos that have gone with the reading. This one is called the Awe Factor.
It’s possible to do high intensity interval training with an oxygen tank at home. This video takes you through 6 exercises. Each lasting 30 seconds with a 10 second rest in between. If you’d like more of a challenge, repeat the video 2 more times.