A hymn that often comes to my mind is one that I write about often. But I never get tired of it! “It Is Well with My Soul” by Horatio G. Spafford is one of my favorites. Horatio was a very successful businessman in Chicago who has a story much like that of Job’s. His only son died right before a financial disaster. He then planned a sort of vacation for him, his wife and his four daughters in Europe. Plans changed when he had to stay in Chicago for a few days longer, so he sent his family ahead of him and was expected to follow a few days later. Unfortunately, the ship his family was on was struck by an English vessel and sank in 12 minutes. The Spafford daughters did not survive. Mrs. Spafford was able to send her husband a message letting him know that she was alive, but their daughters were not. Horatio wrote this memorable hymn on his way to meet his grieving wife.
“When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, thou hast taught me to say,
It is well, it is well with my soul.”
I love this story. Horatio lost all of his children, and in the midst of grief and despair, he still chose to praise his Savior. This is the hope for my life; that no matter the situation or circumstance, I also choose to see it through the Lord’s eyes.
As I have matured and grown older, I feel I become better at this. Living with CF, it is hard to take any day I have for granted. I have learned to see living with this terminal illness as a blessing. Because I trust in the Lord and His plan for me, I feel peace a lot of the time.
Just this past week, I had my yearly appointment at Cook Children’s with my CF care team. Although I go to see them every three months, the yearly involves seeing more people, running more tests and just generally spending more time at the hospital. As you can imagine, this might be a time when my peace might falter. But honestly, I felt a lot of peace before the appointment.
Usually, Jason and I just make a day trip to Fort Worth. But I am required to do an oral glucose tolerance test (OGTT) at this yearly exam, so we spend the night the night before. The OGTT test is done to test for diabetes, or even just the risk of diabetes (pre-diabetes) and is done very early in the morning (mine was at 6:45 am) because you have to be fasting for it to be done correctly. They take your blood when you get there for that fasting blood glucose, you drink an orange drink that is 75 grams of carbohydrates, wait two hours, and then they take your blood again. It is joyous.
The past couple of years, I have learned what to do before tests like this to get my blood flowing so they can get blood in one stick and it not be an issue. So Jason and I woke up around 5:15 the morning of the appointment and I worked out in the hotel gym (Jason watched, haha) so my blood was pumping.
Once at the lab, the phlebotomist printed out all of the orders for each test they wanted done. She took a total of 9 vials of blood from me to check my vitamin levels, etc. I also did a urine analysis.
During that two hours of waiting for the second blood draw, I was able to take a nap. I was grateful for that little bit of rest!
The second blood draw was complete in just a few minutes, so Jason and I were then able to head back to the hotel for a late breakfast.
We ate lunch in the hospital cafeteria like normal. They have this amazing pasta dish that I get every time! Once done with lunch, we headed to my appointment. My weight was down a few pounds, but once I did my PFT (lung function test), things were looking up! I blew a whopping 100%! Normal PFT is 120%, and I haven’t had this high of a lung function in about 5 years. I was blown away (pun intended).
I met with Dr. Cox, an endocrinologist due to my thyroid levels being high at my last appointment. She had looked at blood work I had completed a week before, and determined that the first test was just “funky” and that I didn’t need to worry about hyper-/hypo-thyroidism. I was relieved!!
My nurse checked my blood sugar level, which they don’t normally do, and it was 57, which is pretty low! I was feeling shaky and a little dizzy, so it made sense I was low, but I wasn’t sure why since I had just consumed a lunch full of carbs about an hour before. They didn’t seem too concerned about it, so we went on with the appointment.
I met with my dietitian, who was concerned because of the weight loss. I had switched to the new Peptide-based Kate Farms formula and was unfortunately, having a LOT of GI issues-stomach cramps, diarrhea and the like. I was really upset about it, because Nutren 2.0 had given me a lot of reflux and nausea, and the Kate Farms formula was really helping with that. But, my dietitian and I determined it wasn’t worth it if I was losing the weight. So I am now on TwoCal HN, which is the equivalent of Nutren 2.0, it’s just made by a different company. So far, so good!
I wasn’t able to see Dr. Burk, so I met with another doctor, Dr. Gilbey, and my NP Cyndy. Jason and I had previously chosen to talk with them about taking me off of the antibiotic that I had been on the last 6 months, seeing as how it is expensive and easily causes GI issues. Dr. Gilbey and I agreed that I could trial being off of it, but that if things got worse, I would get back on it. Jason and I decided we could live with that.
I also requested a new portable vest! This is something that I had previously been looking into. My current vest is great and works fine, but I am required to be hooked up to it in one spot for twenty minutes. Now, this may not seem like a big deal; but to someone who has to do this every single day, plus other treatments and live a life, it’s a bigger deal than you may think. So, the new portable vest would run on batteries and would allow me more freedom while doing my treatments. I hope to get it this summer!
A few other people on the care team came to speak with me about making sure my medications were affordable, new research and trials I could participate in. Soon I was allowed to leave and go and do my chest x-ray. The x-ray took maybe 5 minutes, and then Jason and I were headed home.
Last week, my dietitian called to let me know my vitamin levels had come back and were actually high. She wondered if I had been eating a lot of foods rich in fat-soluble vitamins, and I told her I was. She decided I should take my multivitamin once a day instead of twice a day and we would check levels again at my next appointment. My nurse called later to let me know that my chest x-ray was normal, but that my OGTT was a little abnormal. My fasting glucose level was normal, but my two-hour glucose was high, which indicates an increased risk for diabetes. This is not something I am worried about though, as this has been the results of my previous OGTT’s over the past few years. I’ll always have an increased risk of diabetes while I have CF.
So now you know how my last appointment went. As you can see, I really had nothing to worry about, so I am so glad I trusted in the Lord and chose not to worry! I am learning to trust in the Lord and His timing with all things. I hope that it will always be well with my soul; no matter if I have peace, or if the sea billows are rolling.