CF Awareness Month Break: Doctor Visit Update

We will  return to our previously scheduled CF Awareness post-a-thon tomorrow (Wednesday), but I I just wanted to update everyone on my doctor’s visit.

My sister C* drove me to the appointment, and sat in with me while the different specialists rotated into the room. We also had a good luck charm with us, on top of being early, so things went pretty well. I signed in, sat down, and within a minute, they called me in to do my vital signs. My numbers were *okay* – they could be better, but I am just getting over MRSA Pneumonia, so my body is still recovering.


After getting my vital signs taken, I had my Pulmonary Function Tests. They test many things, but look mostly at two values:

  1. FVC (Forced Vital Capacity) – the amount of air I can inhale – went up, which is great news. That means that my lungs are able to get almost as much air as just about anyone else right now.
  2. My FEV1, which  measures how much air I can blow out (Forced Expiratory Volume) in 1 second, wasn’t so great. He wants to get as close to my highest 3 years ago; this will take some seriously aggressive therapy and perhaps some fairy dust, because there’s quite a difference from where I am now, to where I was three years ago, and I am not sure how high I can go.

This information makes sense considering how I’ve had a lot of asthmatic-type problems known as “Reactive Airway Disease”. It all possibly correlates with the problems I have had with my Oxygen levels dropping unexpectedly. 

Oxygen Saturation

I have had some problems with my Oxygen (O2) levels lately. I am able to measure the amount of O2 in my blood with a small, portable meter, and I’ve detected low readings on a somewhat regular basis. My doctor has several ideas as far as causes and treatments, which we are going to work on until we reacg the desired changes.

Sleep Study

To help solve the problem of low Oxygen levels, my doctor is referring me to a Sleep Study where they can hook me up like Frankenstein and monitor my brain, heart, lungs, and anything else to which they can attach an electrode, to see where the low Oxygen readings are originating. I won’t go into the possibilities now, but each potential issue brings with it a series of possible treatments – some more invasive than others. Let’s hope that it takes the path of least resistance to resolve!

A New GI Resource

My clinic has been rounding up Yale specialists who want to work closely with CF patients. For example, there is one Endocrinologist who works with many of the CF Patients with CF Related Diabetes. Having specialists affiliate themselves on a clinical level provides patients with a smoother continuum of care, and also helps the specialist develop a more extensive knowledge and experience base working with the very unique CF population.

Something people might not realize is that “CF Doctors” are, by education, primarily Pulmonologists. Their specialty is the Respiratory system. CF doctors historically have had to either farm out specialists for various non-lung-related issues, or else try to treat them within the previously limited resources of a Lung department.

My CF team is bringing on a GI doctor to deal with the digestive issues that go beyond the most basic symptoms. As patients live longer with CF, our bodies are spending a longer period of time in a CF body, leading to higher levels of damage and disease rarely seen in pediatric patients. We also have spent years taking medications to treat issues that perhaps really weren’t meant to be taken for decades.

This is great news, because although I am currently still working with the CF/Pancreas specialist in Boston, this new GI doctor will pick up all the other GI issues, and follow up if/when I no longer need care in Boston.

Final Thoughts

Overall, it was a positive appointment, but as is typical with these visits, I left with more unknowns and three more doctor appointments. It was a great help to have my sister there to learn more about my CF care as well. My health is very complex and the more that my family knows and understands, the better. I hope to be able to share positive results of all these upcoming tests, but nothing with CF is simple. Whatever happens next, we’ll deal with it, and move on.


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