Well friends, it’s that time again! Time for an update. My last update was a few months ago as my last appointment was disappointing, to say the least. I was having a difficult time with my tube feeds and was therefore, not gaining weight. I was having so much reflux and was forced to decrease the volume of my feeds at night. Fortunately, I figured out a way to increase my calories without forcing myself to eat so much food.
It’s so much easier to drink calories than it is to eat them, so I started making smoothies! Jason helped me a lot by making them the night before using my recipe. We used fruit, ice cream, whipping cream and whole milk. Each smoothie was 850 calories and about 24 ounces. I drank one a day for several weeks until I honestly just got tired of them. I stopped drinking smoothies for a couple of weeks and started to see the weight drop little by little.
I don’t think anyone understands how frustrating it is to consistently lose weight when you already try to gain it. Then to be even more frustrated when you have to be consistent with high calorie meals and snacks. Sometimes, I just want to eat an apple without peanut butter, or eat my cucumbers without cottage cheese or ranch. I crave fruits and vegetables, and I hate that I do. Thankfully, I have enough information that I can still have my fruits and vegetables when I want them. It’s just hard sometimes 🙂
In December, you may recall that I announced my desire to write a cookbook for the CF community. I was so excited about it! I did a lot of research on it after I passed my RD exam right before the new year. I talked to a contact at TIME Magazine who gave some really great pointers. But I soon realized that I wasn’t motivated in the least to write this cookbook. Plus, I’m not one to really create my own recipes-I enjoy taking others’ recipes and modifying them to make them higher in calories. I began thinking about and researching all of the recipes that I thought I would want to include in my cookbook. I immediately became overwhelmed and my motivation vanished. But, the desire remained.
A couple of weeks ago, I met with a Registered Dietitian at the Health Sciences Center about a possible job opportunity. Although the potential job wasn’t for me, she lent me a book titled, “A Dietitian’s Cancer Story”. I had told her about my cookbook idea and how unmotivated I was. In this book, the dietitian who wrote it talks about her story living with her cancer diagnoses. But, she also includes nutrition information, shopping lists and much more. I am so thankful for this RD that gave me a new perspective! Now, I am not writing a cookbook, but a book, for the CF community. It will be my story of living with CF, but will include nutrition information, tips and tricks and so much more for those living with CF. I’m not sure if there is anyone more qualified to write this book than me, a Registered Dietitian living with CF.
Now, about my latest appointment at Cook’s.
Jason and I drove in about 11:30 am Wednesday morning and ate lunch with a friend in the hospital cafeteria. When I was staying at Cook’s for my first hospitalization (that I can remember), I was in high school. Every day for at least one meal I had a Starbuck’s frappuccino from a Starbucks in the hospital and a pasta dish from the cafeteria made with penne pasta, chicken, garlic, spinach and alfredo sauce. Fortunately for me, they still have this delicious dish! I get it every time I come to the hospital now.
I was feeling really confident about this appointment. I was right to feel that way, because I got a great checkup! My weight was up to almost 112 pounds and my PFT was up to 92% from the previous 85%. My doctor was extremely happy. I met with my RD as well, who I consider a good friend. She was happy with my weight gain and was excited to hear about my book idea. She agreed to be a sounding board for me for things I don’t feel I know much about, such as CF infant nutrition and CF-Related-Diabetes (CFRD). My RD is also expecting her first child, so that was extremely exciting to hear about!
I told my doctor that I had just accepted a position as a full-time RD at UMC, and he was very happy for me! I was worried that he might have concerns about me working in the hospital due to the possible high risk of infection. I think, because I am doing so well and will spend most of my time in an office charting, he trusts that I will be okay.
One thing though. A few weeks ago, Jason and I completed a health screening at his work place for our insurance. We got the results of our blood work a week before I went to Cook’s and it showed my TSH (thyroid-stimulating hormone) to be high, which could indicate hypothyroidism. This makes a lot of sense to me because I have been extremely fatigued lately and my body temp is really “off”. I showed the results to Dr. Burk and explained my symptoms, and he wants my TSH re-checked, along with my T3 and T4 levels. He wants these checked a couple of weeks before I go back to Cook’s in May. I will then meet with an endocrinologist that works specifically with CF patients at Cook’s to see if next steps need to be taken. Of course, we are hoping they don’t need to be! Honestly, I would love an answer for my fatigue that seemed to have come out of nowhere, but this could just be from CF. Having a disease that causes your lungs to work extra hard can be tiring I guess!
So overall, it was a great appointment! I have stopped with the fruit smoothies, just because I got tired of them, and am instead drinking a milkshake made with Carnation Instant Breakfast (chocolate), whole milk, whipping cream and ice cream. It’s so good that I actually crave them and sometimes drink more than one a day! These have 740 calories so I am getting a lot in, especially with the extra 1,000 calories I am getting from my new Kate Farms tube feeding formula.
It’s a lot of work, gaining weight and keeping it on, but I desire to breathe well, live a long life and grow old with my husband. I must press on with the strength the Lord has given me! I am excited to enter my new journey as a registered dietitian nutritionist at a Level One trauma center, and to start on my book!