(Lannie goes over the report from the Pacific Fatigue Lab and creates a ‘a plan of attack’ to implement what she’s learned about her body. Thanks again to Lannie for providing us our first in depth look at the Pacific Fatigue Lab’s innovative technology. You can find her blog here)
- Part I – Cost, Background, Insurance, etc
- Part II– On the Bike – Doing the Test
- Part III – The Results!
The intention since my last article (Part 3), was to provide an overview of my “plan of attack.” Using what I learned at the 2-day test, how I was going to implement what I’ve learned into my daily life. Staci Stevens suggested I monitor my heart rate for about a month to learn to identify what causes changes in my heart rate.
After that month, I could then think about implementing a responsible exercise/activity plan. I have started on that review. And it has been very interesting. I’m currently working on a write-up that I look forward to sharing very soon. But in the meantime, I’ve have received my final results. And frankly, it’s required a bit of a mental recovery process. There sure is something to the “ignorance is bliss” concept.
I think I’ve mentioned before, I never think I’m that sick. I still go back to preconceptions of a sick person – they look sick, they limp or shuffle, they are pale, they are not well groomed, they are grumpy, they sleep all the time. I always look around my doctors’ waiting rooms (which many times look more like a triage unit), and think that compared to those other people I’m doing alright. However based on recent conversations and these results, when looking at the black and white statistics, it’s just not the case. I’m one of them.
One such conversation was had with Staci Stevens on day two, when she was sharing my initial results. I flat out asked her how I could have such poor results when compared to an average healthy person or even more so when compared to another person with CFS or Lyme. This test is not the only instance. My CD57 results were the lowest my LLMD has seen, and all he does is treat Lyme patients. But again I go back to, when put in a lineup(as long as I am wearing compression socks and don’t have to stand in one place for too long), you’d never guess I was ill. I don’t look sick, and when around others I don’t act sick. How is this possible?
Her answer was very straightforward and simple. I’m paraphrasing here, but what she told me was that I’ve figured out a way to maximize my good hours much more efficiently than many in these 3 short(ha!) years of being ill. I’ve learned to “live within the illness.” At the time, I was almost proud of myself. I’ve figured some of it out. I’m managing. I may feel like hell on the inside, but I sure don’t show it or let it affect my happiness. But since seeing my results in black and white, I have to admit I slipped a bit. It was shocking. I let the horrible “what if’s” enter my mind. I realized I couldn’t fight it. I just had to live with them for a while.
I’ve lived with them for about a week now, and I’m SO over it(I bounce back quick!). Here I have this plethora of information that will help me with my disability case, and that has the potential to help me re-introduce some form of movement or exercise into my life. I’m back in the game, and I’m going to use these resources and hopefully help a few others by sharing them in the process.
The Pacific Fatigue Lab has asked that I don’t scan and publish the entire report. So I’m just going to have to tell you what it told me, quoting what I felt were a few of the hardest hitting bits of information. Hopefully it’s still helpful, especially for decision making processes around if you want to take the test yourself. If you should have more detailed questions beyond what I was able to share here, feel free to post your email address in the comments and we can discuss privately. Or PM me via Phoenix Rising.
Cardiopulmonary Exercise Test (CPET) Evaluation Report
Page one introduced the report, a little about the patient, my diagnosis (CFS and Lyme), the procedures performed and a one paragraph summary of the findings. The most striking part of the findings stated the following about me:
The next few pages titled “Conclusions” broke the test into nine categories. Each provided a “Normal,” “Abnormal” or “Undetermined” result, and was followed by a one-paragraph conclusion. Each section also provided references to graphs and charts found later in the report.
1) Assessment of Maximal Effort – “Normal.” In the previous post I mentioned my high Response Quotient, proof of providing maximal effort.
2) Reproducibility – “Abnormal.” They mention that a day to day variability for both health individuals as well as those with cardiac, pulmonary and/or metabolic disease is less than 8%. I had abnormally high variability at anaerobic threshold(AT) for oxygen consumption, heart rate, ventilation and workload at AT ranging anywhere from the teens, 20, 30 and even 50 percent.
3) Metabolic Responses – “Abnormal.” My peak oxygen consumption was abnormally low for both days. So I started out low, and then it declined another 51% at AT on day two. This day two result places me in the “sever functional impairment category” according to the New York Heart Association classification for heart disease. Note I do not have heart disease, but similar biomarkers as their most severe category.
4) Workload – “Abnormal.” I only reached 78% of the predicted value for someone sedentary my age, and my AT workload dropped a quarter day two. This goes back to the statement at the beginning that I could not sustain even low levels of work reliably or consistently. Boo.
5) Cardiovascular Responses – “Abnormal.” They did note I had a normal resting and exercise ECG with no arrhythmia or ischemia. YEAH! I needed some good news! But my peak and AT heart rates dropped day two. It was interesting they noted that my HR at AT dropped on day two to such a low level that there was only a very small window for cardiovascular activation before my AT is reached.
6) Sympathetic Response – “Normal.” YEAH!!!
7) Pulmonary Function – “Abnormal.” For both tests my ventilator reserve is abnormally low. It should be >85%. I was 53% and 61%. And why is this important? “Inadequate ventilator drive during exercise can result from respiratory muscle fatigue or a breakdown in central respiratory control and may produce an acidotic state contributing to prolonged recovery and muscle soreness.” LACTIC ACID=PAIN.
8) Cognitive Function – “Undetermined.” I’ll take this as a “YEAH!” Traditionally you should improve your score day two, as day one to practice. My results day two did not improve, they were slightly worse. However most were within 1.5 standard deviations of normal, therefore I was not considered “abnormal.”
9) Recovery Response – “Abnormal.” Recovery time should be 24 hours or less for this sort of test. I am just now starting to feel back to my “old CFS/Lyme normal.” I only reported back to them for the initial 7 days following the tests.
The remainder of the 13-page report included charts, graphs, references and publication sources and a final summary.
The Summary wrapped up the entire test and gave a very clear picture of why this test is valid, why AT analysis is useful, what my results mean to me, and a review of my abilities and disabilities. I’d love to be able to just copy and paste the entire thing. However, I’ve chosen what I found to be an interesting section to share.
I felt this really did spell it out. I about fell over when reading that walking 2.5 mph exceeds my AT. As I mentioned before, this was devastating to read. Just a reminder that that emotional aspects of this illness are many times more difficult than the physical ones. I’m still not sure exactly what all of it means for me. I have a vision of what my life was going to be, is still going to be. That vision is a lot more than what this report limits me to at the moment.
But I’ve had a week to digest it. What I’ve come around to, is that I have this information to help me. Now I can safely and scientifically find a way to manage my crashes, “live in the energy envelope,” and re-introduce activity into my life in a very safe and effective way. Not to mention it’s exercise-science based, so I’m able to approach it as I would training for a race. The race looks different, but the preparation is still the same.
I’ve been wearing my new Polar heart rate monitor and watch. I chose a Polar because it’s what athletes use when zone training. And honestly, living in such an active place as the bay area, it’s just another way to look “normal” in a place filled with runners, hikers, bikers, swimmers…
I’m working on my plan right now. I want to be very sure I create a full program with a rational that is responsible not only for me, but for me to post into the blogisphere. I’ve learned a lot over the past month, monitoring my heart rate constantly. I look forward to sharing my experience with you soon.