Another Routine Checkup

I had been dreading this visit to the clinic because I could tell I was having more difficulties. I’d been coughing more, and had felt bad enough and had enough colored sputum that I contacted my CF doctor to get a course of antibiotics. I did a run of Cipro, and started Cayston a little early. I could tell it helped, but I was anxious because I didn’t know if it had helped enough to keep me out of the hospital.

One of the first things my doctor asked was if I’d be open to going on IVs again. I am open to it, but only if it’s the absolute last option. I have not had great experiences, as you can read here,  and I think that it’s best that I stay out of hospitals as much as possible. But just the mere mention of it sent me into depression. If I had to go in, not only would it be another 3 weeks or so not being able to do much work (limiting weight lifting in the arm with the PICC line to 5-10 pounds) and probably not being able to garden or do housework (using the arm plus disease vectors), but it also meant I would have to pay another $1000 plus out of pocket. I do not have that in my budget right now.

So for the past month, I’ve been trying to push myself even harder but mostly it has been mental work. I’m trying to put in more hours at work right now, and between my meds taking over two hours a day (many days much closer to two and half or more),  the daily and weekly chores,  trying to fit in the cardio workouts, and yoga, and weight lifting, and reading, I felt more and more like I was running on empty. I just could not fit it all in to my day, and I was scared that it was going to take a toll on my physical health as much as it was mentally. So I made a decision, that no matter what I was going to California next month. I decided I couldn’t let not knowing what my numbers were going to be affect the plans I had made. If my numbers were that bad, I would just wait until I came back to go in. Besides, maybe my numbers weren’t that bad and it would all be a moot point.

Flowering Azaleas

I was nervous and woke up early on Friday, the day of my clinic appointment. My appt. was at 10 AM and that meant leaving the house by 8:30. After doing my hour and a half of nebulizer treatments in the morning (Hyptertonic Saline mixed with Xoponex, Pulmozyme, and then Cayston), I ate a quick breakfast and did about 10 minutes of Zumba on the Wii. I finished getting ready and got to the clinic just a little late due to road construction. PFTs (pulmonary function tests) were first, and I was a little nervous-but the techs are always so great to work with. I like to watch the screen as I breath into the machine. I think it helps me to push myself harder when I can see how much further I have to go. Three tries and I’m done- I anxiously scanned my results to see my FEV1- and the number I thought I saw was low. My heart sank as I thought I saw a 42, which would mean another trip to the hospital for another “tune up”. I asked the tech if she could tell me how I did- and she said you are pretty much right where you were last time. “I am?! What’s my number?” I asked a little incredulously, and she replied that my FEV1 was 52% – just a little down from last time but not by much.

I was so relieved and almost cried. That I was “stable” and had not had a significant decrease in lung function was such a release mentally. My doctor only brought up the idea of hospitalization as saying that I did NOT need it because I was stable. Everything was looking good, and other than the respiratory therapist wanting me to exercise more (particularly cardio) nothing needed to change. I did decide to try a prescription of omeprazole to see if that could help settle my stomach a bit as it has been more upset lately. Although, I wonder if any of that can be attributed to the increase in stress.

After talking it through with my doctor, we also decided that I would try the Tobi podhaler. It’s a powder form of Tobramycin that you inhale twice a day. It’s a much quicker treatment than the inhaled nebulized solution. However, I still have concerns about becoming ototoxic to it, because I just feel as though the coincidence of my developing vertigo for the first time ever while on it is a bit much. Also, when I was on the Tobi IV, we had to pace my treatments out to once every 36 hours versus the once every 24 hours other patients typically take. My doctor advised me to keep a close eye on myself for any changes, and to stop immediately if I develop any of the same symptoms.

The goal of trying Tobi is to 1. hopefully cut down on the number of infections that could affect me and 2. potentially help raise my FEV1 higher (partially as a result of fewer infections) so that next year when the new Vertex drugs become available, I will be in the best possible position to take full advantage of them. With the new drugs, even though the average increase in FEV1 was about 4% (not a huge increase) the other advantages may be even better- fewer infections, increase in FEV1 (greater than 4%) and decrease in digestive issues (weight gain for most patients). I don’t need to worry about weight gain, but fewer infections could at the least, keep my numbers stable for many years to come. This drug looks very promising and could lead to more breakthroughs in treating CF. What is different about it is that it is trying to treat the underlying problem that the CFTR gene causes- rather than just the symptoms.

So all in all it ended up being a routine visit, but I am happy with that. The goal is to be stable for as long as possible.

March Clinic Visit 2014

So I had my three month follow up visit, and everything is still good!

James River from Belle Isle

James River from Belle Isle

The bad news is, my allergies are going crazy right now, and it’s most likely causing the congestion in my trachea and sinuses. It doesn’t help that Richmond is considered #8 out the 10 worst cities with allergies this year. Ugh. Also, I’m already doing almost everything that has been offered as an option (in terms of prescriptions and medications) that can help relieve my symptoms. My Dr. did however, tell me that the best way to take Nasonex, is to do a sinus rinse first, wait fifteen minutes, and then spray. The worst part about my allergies is that I keep waking up at night, coughing from the drainage down the back of my throat. I can take sudafed or benadryl and that helps me sleep, but the down side is that I still have drainage, but instead of coughing it out, it ends up in my lungs and can camp out there for a while.

The good news from my visit is my numbers are still holding strong! My weight has remained steady (which I have been tracking every day, so I knew that was going to be OK), and my PFT’s are at least remaining stable. Due to a scheduling mistake, I saw my Doctor before I did my PFTs, and she prepared me by saying that it’s very common to for the numbers to trend down again. The IV’s, she reasoned, give your body a great boost, but then you settle down a little into where your numbers will (hopefully) stay even. I could tell though, that my numbers should be close to what they were because I was feeling good, and I could tell I was doing better with the increase in exercise.

With the increase in exercise, it would be really easy for me to lose (too much) weight. But I’ve been careful in listening to my body and when it says I’m hungry, I eat. I’m also fortunate that I have continued to feel good, and not had more than maybe one small cold (and allergies) to bog me down over the last three months. When I don’t feel well, I don’t eat as much as I need to and I can lose weight fast. For example, in college I got sick with the Coxsackie virus, and had sores on the inside of my mouth and throat. It hurt too much to eat, sometimes even swallow, and in the week that it took for me to get properly diagnosed I had lost 15 pounds. That was enough to send all my numbers low enough to warrant my second ever visit to the hospital for a tune up.

But in this visit, not only is my weight staying even, but so were my PFTs. So this time, my doctors wanted me to do a Pre- and Post- bronchodilator PFT to see how much I may be affected by asthma-type symptoms (narrowing of passage ways vs. obstruction with mucus). My Pre-PFTs were pretty good, and my best FEV1 was at 54%- compared to my last visit at 51% I think that’s great! But here’s where it gets really exciting (to me anyway). My post- FEV1 best was 59%! My goal that I wrote in my last CF-related post was to get to 60% this year. I am so close and now I know I can do it! I attribute this increase in my FEV1 with exercise. I’m sure increasing the strength of Advair I take has helped too, and seeing the numbers go up a little after the bronchodilator, there is some asthma-like symptoms that are contributing as well. I still have a fair amount of obstruction though, which means all my numbers are still a bit low. BUT that is another reason why exercise is so important– I move stuff around and hopefully get stuff out.

Birds on the James

Birds on the James

My doctor didn’t make any changes to my regimen this time, but I am going to try to increase the amount of cardio I’m doing. I’ve got to look at my journal and crunch some numbers, but only about 30% of my exercise in the last two months has been cardio-based. (Roughly 1/3 was weight training and another 1/3 was Yoga). The biggest challenge in doing this will be making the time. It can be difficult to carve that much more time out of my day when I already spend an hour to an hour and a half doing my nebulizer/air vest treatments, getting enough sleep, and feeling up to doing something after a full day of work (mostly on my feet).



I know I am not the only one who thinks that  sometimes it can just be so hard to do what I need to. To exercise, to move my body through space, to breathe. Sometimes I feel I have to pull the energy out of nowhere to do these things. Every couple days I’ll give myself a day off, but I always have to push myself. Out of my routines, I think that Yoga is the most fun, and easiest to find time for. Walking on the treadmill is not bad because I can read while I walk. I’ll be honest in that weight lifting can feel like a chore, and Zumba, while very fun, can be frustrating. I am so glad I got Zumba World Party because it really is fun and interesting to play. My frustration lies in my inability to sometimes get through a whole routine because I start coughing. But it’s also good because it really helps move stuff through my lungs. But to actually spend about 20 minutes doing routines in the program, I actually spend closer to an hour of time between choosing songs and stopping to cough and bring stuff up. I have been using the quick play feature because it does one song at a time and only lasts 2 minutes- which is about perfect for me to get a good cough. Play, stop, cough, play, stop, cough.

I’ve also been counting other things as exercise, like the hour and a half walk/hike I took with my visitors last weekend. (The pictures are all from that walk, around Belle Isle on the James River). And I can definitely tell I have better stamina than I did before. So all these things add up, and I think I will continue to meet my goals as long as I don’t get sick.

Managing Cystic Fibrosis — Hospital Tune Up and A New Goal

This year was a low point, and a high point, for my health and managing my Cystic Fibrosis.  This last year I dealt with more than I have in a while .  For the first time in 11 years, I needed to go into the hospital for a “Tune Up”.

I really do consider myself lucky in that I have a much more mild case than most patients with CF.  Over the course of my 33 years, I’ve only had to go in to the hospital for three tune ups– not counting my initial diagnosis at the age of four months old.  My health, my lung function and digestive system in particular, stayed relatively steady and even for many years.  And, most likely due to the amount of exercise, I maintained fairly well even through college when I was hospitalized.  But since then, very slowly, sometimes almost imperceptibly year to year, my lung function has declined.  This year I hit my lowest point ever in August.

Every three months I go to UVA for their adult CF clinic.  I have been at this same clinic since I graduated from college, and have seen many changes take place in the office.  One of the major changes occurred about a year or so ago when my doctor left and they brought in two new doctors.  The new Doctors, two extremely competent and very nice women, were more aggressive in wanting to treat me.  And honestly, with a disease like CF, you need to be aggressive because it is too easy to let things slide (and your health can go down very quickly).  They expressed concern over the trend in my PFTs (Pulmonary Function Test) and so we started trying different drugs and regimen changes to increase my FEV1 percentage.  FEV1 is the measurement of air I can expel in one second.  I couldn’t see much difference in any one change, and by August I was down to 41% FEV1.  I had been hovering around 50-53%, but this was too low and they strongly urged me to take a course of IV antibiotics.

This was hard to hear, because I really did not want to spend a week in the hospital.  My previous visits were to stay a week in, while they tweaked my medications and monitored any progress, and then send me home for a week and continue treatment.  Adult clinics do things a little differently and my doctor promised that I would only be in for three days max. while they correct the dosage.  In and out, and then on a home course for two weeks.  Sounded manageable, but I was also right in the middle of selling my house and buying a new one.  The timing was awful, and I wanted to think about it, and maybe come back in a month (after everything should be settled) and then start treatment.  Soon after coming home from that visit, my friends and family urged me to reconsider and go in as soon as possible.  I acquiesced.


And so that’s how it happened that I happened to be on IV antiobiotics AND buying a house AND selling a house all at the same time.  And not any one of these things was easy or simple.  I already blogged about buying and selling my homes, and if I had to do it all over again I would.  I LOVE our new house and yard, I LOVE our location, and I LOVE having a short commute (I consider 15 minutes compared to the hour+ each way is a major improvement).  It was all so stressful, but I made it through and with flying colors I think… (at least no one has told me that I was a complete crazy person).

The only easy, simple thing out of the entire process of going in for a tune up at the hospital, is that somehow everything was already set up and all I had to was walk in.  I don’t remember signing more than one liability waiver when they put in the PICC line (as an outpatient) and maybe one to authorize setting up a home health care supply.  No one asked me about insurance (because it was already in the system), and I didn’t have to pay a deductible while I was there.  I thought this is what living in a different country must be like…but as I said, this was the ONLY simple thing.

I called up my doctor to schedule time to go in a week after my clinic visit.  Originally, I was supposed to go in on Friday (they would call first) and I would get my PICC (peripherally inserted central catheter) line in place first, and then go up to my room to get started.  Unfortunately, the bed they thought would be vacant was not, and so a decision had to be made. Put the PICC line in anyway and hope the bed frees up when they expected it to Saturday afternoon OR wait until Monday because the staff doesn’t generally put in PICC lines in over the weekend.  Not wanting to put this off any longer than I had already, I opted to go in and have the PICC line placed and then go home and wait for the call.  Late on Saturday afternoon it came in and we arrived around 7 PM.

PICC line

PICC line (source)

This is what my PICC line looked like- a statlock device (non-sutured please thank you!) with two lines.  The procedure went well, and I was so happy to find that they were not placing the line directly in my elbow (just above it) so that I could actually bend my arm.  Two plus weeks not being able to bend your arm is NOT fun.  I’m sure anyone who has broken an arm has felt similarly.  And yes the lines are that short- but once I was home they added extensions to them so that I could flush them and administer my medications myself.

Once I had my bed/room at the hospital (thankfully a single room) they immediately started going through the rigamarole.  Lots of questions and histories, and it took the staff about an hour to figure out that my Doctor (who had gone home for the evening) had already put in all the orders. Hospitals, in my opinion, need to have open communication as much as possible. Information needs to be easily and readily available and if there was a way to digitize everything even more I think it could only help. I feel as though they should have been aware why I was there to begin with, but instead I had to explain it again to every. single. person. The weird thing was, I didn’t feel particularly bad. I felt the same as I had in months, if not years- and many people could not understand why I was in the hospital if I didn’t feel bad. I was there because my PFTs were low and I needed a boost.

The first night was awful- I didn’t get much sleep and they treatments schedule was something like 8 PM, 2 AM, 6 AM, 10 AM, etc… Since I was on two different medications, and they were on two different schedules, I was tethered to an IV pole quite a bit.  The food was truly awful. When I find food dissatisfying or unappetizing, I very quickly lose any appetite. After a while, if I haven’t had enough to eat, I get cranky and irritable and stressed out, and then seeing the food from the hospital stresses me out and becomes a cycle of stress. Thankfully, Mr. Lucky was there for me and came to visit every day I was in the hospital. He also went out and brought me snacks so that I could feel a little more like myself. (I, unlike many other kinds of patients, didn’t have a restriction on food because my digestive system is not like most peoples.  Because I don’t absorb all the nutrients or calories from the food I eat (even with my meds) I can lose energy and weight very quickly if I don’t do what my body tells me to eat.) I suppose I could have, but never thought to ask the nurses to bring me anything (can you do that?).

Something I found amusing in a slightly annoying way, was that not only did they NOT have all the medications on hand that I routinely take every day, but the nurses didn’t necessarily understand the labels either. I take a prescription called Creon, which is a pancrelipase, and helps break down the food I eat for absorption. It replaces the digestive enzyme that comes from the Pancreas since most (or all) of that enzyme is blocked in my system from going through the proper channels. (Another common symptom of CF).  I take this medication with my food, when I eat my meals. The nurse thought I should take this medicine with food, meaning, I need to take it whenever she gives it to me (all hours of the day, whenever they get a chance) and eat food with it.  Umm…no.  It’s not a drug I need UNTIL I eat. I’m not sure this one nurse ever got that.  Thank goodness I had my own pills on me so I could take them when I needed them…

So everything was going fine. I was trying to stay upbeat- just a few days and then I could be home!  My parents were coming to visit very soon, and there were some time crucial documents I needed to deal with to buy my current house. The levels of the antibiotics were good–they had adjusted them as necessary. Not surprising (to me anyway) was that my liver does not process Tobi (tobramycin) as fast as expected, so instead of one dose every 24 hours, I needed one dose every 36 hours.  Not a big deal, but it also means they just increased my treatment period for a week.  This was not surprising to me because I felt as though I started having vertigo the last time I took Tobi (inhaled solution).  It may actually not have been the Tobi, but it is a known side effect (it messes with your inner ear when it builds up in your liver- you can become auto-toxic) and I did not want to take chances.  So I had a balance test and an hearing test which pointed to no permanent damage, which means that occasionally if I need Tobi, I can take it.

As the Monday morning became Monday afternoon, I started freaking out because no one was talking about me going home.  Monday was supposed to be the day! Early afternoon they finally came in to explain why they wanted to keep me an extra day. My initial blood results tested for a gram positive stain- meaning (supposedly) I had a blood infection. This was very serious they explained, and they needed to keep me an extra day to keep an eye on me. Now I understand that they were covering their butts on this, because the hospital could be found negligent if they allowed me to go home and then something serious happens to me. However, I felt that it did not make any sense whatsoever, and now I would have to pay for an extra day “just because”. This is why I didn’t buy it: 1. I didn’t feel sick.  All morning I had several doctors (including a gaggle of students) come in and ask how I was feeling. Not only did I not feel sick, I actually felt great! I was getting stir crazy and wanted to go home. I don’t think any of them believed me because my blood sample said differently.  2. It is possible to get a false positive on this test. Admitted to me by the Doctor who was handling my care, sometimes there is a mistake. My sample could be contaminated another way, or there could be a lab error, or sometimes they test positive when they are not.  Considering how confused the nurses were when the took my samples (and took a full five minutes to make sure they got all the labels right and then some…) and how earlier that day someone else’s vial of blood was dropped in my room, I can see human error accounting for many mistakes.  And lastly, 3. I was already being treated for a blood infection. Granted, I was taking IV antibiotics for something else, but the end result would be the same. My blood tested positive on Saturday night when I was first admitted, and started IV’s right away. Theoretically, if I had an infection, it would have been treated immediately and I should have been fine by Monday. The Doctor said that most infections, when treated quickly, usually one takes a couple of days to clear up.

I was livid. I now felt as though I was being held hostage to their insecurities. They had failed to approach me about this earlier (or purposely waited) so that I would have no choice but to stay–unless I wanted to go without IVs for a couple days because it was too late to set up the home health care team. I was very tense and terse with the Doctor and gave her a piece of my mind. I tried to be kind to everyone else though, because I know that it’s not their fault I was still there. I know it’s not really the Doctor’s fault either (it’s probably hospital policy) but I felt like she should know better. I told them I would not be coming in again for any kind of treatment, but I might revisit that absolute in the future.

With my parents arrival the next afternoon, I made it clear that I was to get out of there ASAP the next day, and wanted to leave by noon. The Doctor agreed upon my new lab results being clean (which I told her I was 100% sure they would be- and they were).  To their credit, everyone did pitch in to help my make that goal (I ended up waiting close to an extra hour though for my first doses of take home IVs).  Finally free! Mostly…sort of.  I had some limitations including not being able to lift anything over 5 pounds with my PICC arm or lift anything over my head. My boss very generously told me to just stay home the whole time, but three weeks is crazy and I knew there was stuff I could do.  So on days that I did not have an 11 AM Tobi treatment, I went to work.  While doing the IVs we also closed on the house, and I managed to hire movers (since I couldn’t lift anything). The PICC line came out the day the movers showed up.  Also, Mr. Lucky did a whole bunch of moving stuff for us as well (thankfully!).  I felt weird and useless for not being able to do more.

The day after we moved in, I had my follow up clinic appointment.  They were very happy with my results- I gained 10 points on my FEV1 and I was back up to 51%.  That’s better than they hope for, and even told me that they expect that number to dip back down again at my next clinic visit.  In the meantime, we decided not to follow up with any Tobi inhaled solution to just see how I do. Fast forward three months to mid-December at my next visit, and my FEV1 is still at 51%.  That’s great!  They are ecstatic about my numbers, because my weight is also up a few pounds and the big kicker is my total lung volume. Before hospitalization, my total lung volume was hovering around 65% I think. After the tune up it shot up to around 80%. This December that number was at 97%.  That means I have a total capacity is 97% predicted of someone in my height/weight/age range which is almost science fiction sounding. BUT my FEV1 is still low- remember that’s the number for getting air out fast.  My Doctor explained it by saying that it means I have obstruction in my lungs that is preventing that air from coming out. So for now, the only change to my regimen is to increase the strength of Advair. I’m also going to have an albuterol test (before and after) to see how much of it could be asthmatic conditions.

But how did my total lung volume jump up? One word- exercise. Feeling better after my course of IVs, I started moving at least 20-30 minutes at least 5 days a week. My respiratory therapist gave me an A+ and I am encourage to do even more. I know I can, I can feel it. My goal this year is to try to get my FEV1 up to at least 60%.  It may not happen- it may not be able to happen- but I’m still going to do everything I can! My routines vary every day- some days I do yoga (which is great for working on the lungs and breathing), other days I do Wii Fit, and other days I walk on our treadmill. I recently ordered Zumba for the Wii and hope to rotate it in two days a week (hopefully). I do feel better overall, and I know that I can tolerate more now– walks outside in the colder air, running through the airport to catch my flight, and generally recovering faster when I have a coughing fit. I am hoping that if I get sick- with a cold or some relatively minor ailment- that I will be able to recover faster as well. Thankfully, I haven’t had to deal with many changes in my digestive system– although I am trying to incorporate more vegetables in to my diet.  And I was recently tested again for CF related Diabetes, and passed my 2 hour glucose tolerance test with flying colors.

Whew. Thanks for letting me get all that off my chest. I know it was a long read, but I just wanted to say it. Looking over it all, it keeps hitting me how fortunate I am that I am in a position to do these things for myself, that I could go into the hospital (and afford it), and that my health really is OK. Just last week I met a girl (whose father I know in a professional setting) who is about ten years younger than me (maybe a little more) and she’s doing OK too, but she had a lung collapse this last year. It didn’t get better on its own and she had to have surgery. I wanted to give her a hug (but that’s a no no for CFers to get too close to each other – what with the communicable pathogens and all).  I am so thankful for all that I have, and I hope never to forget it.

Bone Scan What?

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:

dexa machine

DEXA machine

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.