It’s been a while since I last posted–mostly I feel like I’ve been too busy or too tired to write. But I feel as though I’ve got stuff to share and I actually miss posting! I’m going to try to just write and post more – even if it means fewer pictures. Also, I’m going to start writing more about Cystic Fibrosis. I’m not so vain as to think that anyone really wants to read about it- it’s more about me being able to just get some of my thoughts out. It’s about making this blog a little more personal.
At my last clinic appointment, my Doctor asked me to see an Endicrinologist and get a bone scan because my vitamin D levels are still low. My levels have been low for a few years, and although they have come up quite a few points since I’ve been taking supplements, they still aren’t quite where the doctors want them to be. CF Patients typically don’t absorb many nutrients needed. In particular, the digestive enzymes from the Pancrease are blocked, and it is very difficult to digest fats. Vitamins A, D, E, and K are fat soluble vitamins, which means that CF patients are usually particularly low on these vitamins because they don’t absorb them as well. I take a multi-vitamin every day, and supplement with D, E, and K. But since my numbers have been staying steady at 24, instead of 30 where they should be, my doctor wanted more information.
Our bodies are systems, and the more we know about each part, the more we can know about the whole. I agree that we need specialists to focus on different parts and systems of the body because they are so complex, but I also think that sometimes we over-simplify the problems we have. I think that many of the medical problems we can experience are not solely based on what part of our system, and that we may need to look more broadly to figure out how to best take care of ourselves. That’s why I love having a CF specialist. My doctor knows primarily about Cystic Fibrosis, but she also knows that it affects so many different areas of the body and we need to look at the different pieces to put the puzzle together. So I was totally on board with seeing an Endicrinologist and getting a bone scan to make sure there wasn’t something else going on.
The first part of my visit was to see the Endicrinologist. She met with me and discussed the importance of having a bone scan, until she realized I was about to go get one. We then focused on what she expected to results to say, and what I can do to help myself. To start, I can double the amount of vitamin D to get my vitamin D number up. It was clear from my lab results that the vitamin supplements- mostly over the counter D3- is working–I just need more of them. I got the feeling from our meeting that doctors don’t really understand the exact mechanisms of why we absorb some things, and not others. The best I can do, as a CF patient, is what I call brute force. I take as much vitamin D as I can, and we’ll see what sticks. My doctor did say that unlike calcium, there is not a risk of overdosing on vitamin D, and I should just keep upping my dosage until we find what works for me.
The other two things I’m supposed to do is make sure I am getting enough Calcium, and don’t fracture anything. For older women, and patients like myself, I need to get at least 1200mg of Calcium a day. I already get pretty close to that- drinking a cup of hot chocolate made with milk every evening, eating greek yogurt with breakfast, and string cheese. There is also some minimal amount of calcium in my multi-vitamin. As for don’t fracturing anything…well I guess that means not doing any crazy stuff like trying to skateboard for the first time.
So why would I be at risk for fracture? Most people with Cystic Fibrosis take a number of steroidal treatments throughout their life- things like prednisone- to help treat infections. These treatments can leach important minerals out of our bones, and cause them to be more brittle and prone to fracture. A typical Z-score for someone who has taken steroids their whole life is usually -1 or lower. A score of -1 and up is good, and 0 is exactly the average. I have not taken massive amounts of steroids, but I’ve taken enough to go into this thinking it could be bad.
Then, the bone scan. What is it? What does it do? How does it do it? Everyone kept saying it’s the easiest test you’ll ever do- and they were right! They took me into a room with a bed and a scanner. Much like the one pictured here:
It’s called a DEXA, which stands for dual energy x-ray absorptiometry. It’s a non-invasive machine that measures bone mineral density through x-rays. I had to make sure there wasn’t anything made of metal that would throw the scan off- but other than that you don’t have to do anything. You lay there, and the machine moves around. The radiation is so low that the technician doesn’t need any protection. For part of the test, my feet were elevated like they are in this photo, and for the other part I just had my legs straight. When my legs were straight, they strapped my right foot with velcro so that it wouldn’t move. After about fifteen minutes, the test was finished and the tech. gave me a printout of the results to take back upstairs to the Endicronologist.
My doctor didn’t have more than a minute to go over the results with me, but it was good news. I’m normal and in the healthy range, and shouldn’t need another test for at least 5-10 years. I couldn’t remember what the actual numbers were, but the other week I received a note in the mail from my CF doctor.
My lumbar spine correlates with a Z-score of .7 “which is normal as defined by the World Health Organization. Woohoo normal! For my hip, the right femoral neck measured a Z-score of -.7, and the total hip was an even 0! More good news- everything is healthy and considered normal, and I am not at an increased risk for fracture. I did laugh though at the score of 0–the endocrinologist told me that is the average and no one is ever exactly the average. Oh well :) Guess I’m just average! And frankly, being average is pretty awesome.