Monday, October 12, 2015

How to get your 20g of fat to take with Orkambi

Tomorrow is the big day for me.  I am scheduled to start taking Orkambi.  And it got me ransacking my home looking for things that have 20g of fat in them to eat when I take the drug.  Which then got me thinking that I should compile a list of foods and beverages that someone can take or add on to things in order to reach the 20g goal.

This list is far from complete and I will gladly add on any suggestions!!!  Some of the information is taken from my house and some are taken from this website.

Junk Foods
Entenmans powdered mini donuts – 4 donuts = 12g
Oreo double stuffed – 2 cookies = 7g
Ice cream – ½ cup = 9g (varies based on flavor)
Potato chips – 1oz = 9-10g
Original Sun chips – 1oz = 6g
Cheese and crackers – 1oz = 7g
Chocolate pudding – ½ cup = 4.5g
Cheese puffs – 1oz = 10g
Beef Jerky – 1.5oz = 11g
Chocolate bar – 1.5oz = 13.5g
Chocolate chip cookies – 4 medium sized = 11g
French Fries – medium order = 24g
Healthy(ish) Snacks
Almonds – ½ cup = 24g
Cashews – ¼ cup = 14g
Sunflower seeds – 1oz = 14g
Peanuts – 1oz = 14g
Skippy creamy Peanut butter – 3 tablespoons = 24g
Nutri-grain bar = 3g
Quaker brand Granola – 1/3 cup = 2.5g
Trail mix – 1oz = 8g
Yoplait original yogurt – 1 container = 2g (Yoplait Light has 0g)
American cheese – 1 slice = 9g
Swiss cheese – 1 slice = 8g
Provolone cheese – 1 slice = 7g
Cottage cheese – 1 cup = 10g
Cream cheese – 1oz – 5g
Colby cheese – 1.5oz = 14g
Fruits and Veggies
Avocado – 1 cup = 21g
Coconut – 1 medium = 133g

Spaghetti’os with meatballs – 1 can = 12g
Prepared Kraft Mac and Cheese – 1 cup = 16g
Ground beef 85% - 3oz = 13g
Chicken – 1 cup = 19g
Pork loin – 1 cup = 12g
Sausage – 2.7oz = 20g
Duck – 1/2cup = 20g
Lamb ¼” fat – 3oz = 18g
Bacon – 5 slices = 16g
Hot dog no bun – 1 = 13g
2% milk – 1 cup = 5g
Whole milk – 1 cup = 8g
1% milk – 1 cup = 2.4g
Add on’s
Extra virgin olive oil – 1-1/2 tablespoons = 21g
Butter – 1 tablespoon = 11g
Sour cream – ½ cup = 12g

Ranch dip – ¼ cup = 8g

Thursday, October 1, 2015

Follow Up Appointment

Today I had my follow up appointment at MGH after my 2 weeks in house for IV antibiotics.  Today's appointment was actually my 3 month from last appointment but I squeezed in a sick visit and hospital stay lol.

All looked good.  My FEV1 was up to 1.09L 37% so back to baseline.  My weight was down another few pounds but I lost 3 pounds in the hospital and 2 pounds visiting my family which will all come back on once I get back into my routine here at home.

I got to meet with the endo and I LOVE HER.  So much better than the one at Children's who was a bitch to me.  She was super sweet and sat with me for close to an hour going over things.  I had a 3 month log for her to review and she said right now I don't need insulin but to keep an eye on highs.  We may throw a short acting one in before certain meals if I know it will cause me to spike and crash.  She also wants me to get a dexascan (bone density) done before my next appointment.  I swore I had one 6 months after my hysterectomy but it is only showing one right before.  And at that time I was slightly below normal for my density.  So she is also having me start on an estrogen patch to help with some issues and to be sure that my bones don't get too weak.

I am scheduled to start Orkambi on October 13th and I am scared!  Check out my guest post on the CFF blog to see why!  That and the side effects can be brutal the first few weeks.  I am not looking forward to them and hoping I don't get them.  But the side effects are shortness of breath and chest tightness which is my thing.

I got my flu shot today as well.  Hello sore arm for a week lol!

I was also told that my sputum culture showed MAC (Mycobacterium avium complex).  Right now I am not worried.  One positive does not mean I have MAC in there.  Especially since I feel good and I responded to the IV antibiotics, which would have done nothing for a MAC flare up.  So I gave another culture today and we will see what it grows.  Most likely it is a false positive which is very common for it.  But if I grow it again then we will have to reexamine what to do.  Since I feel good it could just be a monitoring thing.  Which would be way better than 12+ months of IV antibiotics!!!

Other than that things are going well.  I see transplant clinic tomorrow and they can tell me to come back in 6 months again.  I may see if I can do yearly.  Seems silly when I feel good to be there twice a year.  But who knows.....