Waiting for Lung Function Test

“Normal” lung function goals

Due to the timing of the pandemic restrictions on normal routines and best medical care practices, I haven’t had my PFT tests since August 2019, when I was dealing with breathing issues after my car accident. Luckily, my breathing has pretty steady for me, but as it’s been more than 18 months, I’m very interested to learn whether or not there have been any changes.

While I was hoping to get the breathing test done on my March 31st appointment, he decided to do a lung and heart ultrasound, as well as order a separate CT scan, before scheduling me for the desired breathing test in mid May.

When I talk about knowing my triggers, and understanding my lung capacity over time / seasonal variations, this is when this part of the doctor’s PFT (Pulmonary Function Test) helps me to understand when I’m at my best or worst each year / each season.  Going 18 months without knowing what’s working or not, especially when my oxygen saturation rates keep dropping down into the 80’s while exercising, is a concern for lack of statistical data about what’s really happening.

In my case, when doing a 3-year look back, it’s clear that I am at my best from April or May through October each year, and I credit my high October numbers to the fact that it’s still very warm where I live, and I will have had the extra exercise I get all Summer (during the warm weather) to help my lungs function at their best despite their poor performance overall. 

Additionally, I can see that the Winter / rainy weather which typically kicks in during November and can run through early March is also visible in my lung performance because I’m spending more time indoors, hiding from the wet and cold weather, and I’m getting less exercise every day. 

So, for anyone new to what it means to have COPD, it’s important you get to know your numbers. 

Don’t hesitate to talk to your pulmonologist or respiratory therapist about quarterly or semi-annual PFT tests, and run comparative assessments about when you feel your best vs. when the test results say you are doing well.  Since one of the tests they give you includes a lung function test without using an inhaler as well as after using an inhaler, it’s an important tolerance test to let you know if the $400 or $500 a month medication is worth the improvement in your breathing you may experience short-term, as well as the complications for causing osteoporosis, cataracts, etc., etc., etc. So much goes into every decision about what medications to use, what medications to skip, and what alternate health / wellness treatments to try, that it’s important that we keep an open mind while also being open to alternative treatments.

It’s easy to ignore our daily efforts to continue to improve our own levels of wellness, but it’s important for your overall quality of life that you participate in your care options and in efforts to make yourself feel your best despite your diagnosis. 

As for me? I’m working on a cruise for 2021 (tight budget until it’s all paid for), and I’m plugging in that trip for next January to some place warm and sunny to help me keep my swampy lungs dried out, and to give me some excitement during the worst part of my breathing year. 

I realize my choice to travel before anything else isn’t for everyone, but you can do more if you concentrate your spoons of energy on how to get the most out of your life despite our overall challenging quality of life diagnosis. 

I hope this information helps anyone reading this who may have breathing issues, or being a caregiver for someone with breathing issues, understand the importance of regular PFT testing, as well as the importance of knowing your specific results over time. It should help you to understand what is and is not working in your efforts to feel your best every day despite any weather or seasonal challenges that may act as exacerbation triggers for your version of the disease.

My “Normal” lung function

This is a typical result I achieve when running my PFT tests. 

When I talk about my lung capacity being 26 or 27 percent, that’s highlighted in blue ink on the image above. The green highlighted area shows the normal range expected if one is healthy. The yellow highlighted area shows my actual measurements for liters of air processed during the 7 or 8 seconds noted when I’m inhaling or exhaling. 

Remember – FVC = Forced Vital Capacity (what you can inhale) and FEV1 = Forced Expiratory Volume (when you exhale) over that same 7 or 8 seconds noted on the diagram. 

As you can see, I can get in very little air, and I’m done at about 1-2 seconds for inhaling. Then, I can exhale for longer, but I’m pushing myself to get the air out (forced expiration). In general, I breathe very shallowly, and need to concentrate to take big inhales and big exhales when I’m trying to get my oxygen saturations up as the numbers fall into the 80% saturation rate while exercising.

Hopefully, this annotated image helps you to understand your own test results if your doctor runs these tests and gives you copies. As Russ Winwood of www.COPDathlete.com has shown, knowledge is power, and you should get these tests run during the 4 seasons of the year over time so that you get a feel for when you are at your best or worst for breathing abilities. 

Finally, when you look at the rating I’m given (under the green column), you can see I get a “D” or “Barely Passing” grade. (One of the tests I took when I was 58 told me I had the lungs of an 80 year old – ha, ha – but the important point is that I’m staying stable for the last couple of years, and I continue to push myself to try and maintain this level of measurable functionality).

My breathing highs and lows over the seasons

For those new to COPD who may be reading this to try and educate yourself about other folks experiences, tricks and tips for wellness, I hope this data helps you build your own set of helpful, relevant, factual markers.

CT Olympics

Managed to get to the radiology department by 7am yesterday morning, and was the first person of the day for my CT scan.

Sadly, while the tech was nice enough, he was in a rush to make a staff meeting, and kept trying to help me move faster on and off the machine table vs. leaving me to do it at my own pace so that I would not tweak my right side.

While I am still hovering around 177 or so vs. my preferred 200 lbs, anyone who looks at me still sees an obese woman and presumes that I am out of shape / unable to help myself move around. I’m pretty limber, which my pot bellied appearance belies, but people believe what they want vs. listening to what you’re saying.

I had to tell the tech – twice ! – to let me lay back at my own pace as I was trying to protect my right side from torso muscle spasms. He kept trying to shove the pillow under my head to ensure that I could breathe when my arms were raised over my head, and that was making my right side crazy.

When it came time to get off the danged table, he tried to grab the sheet under me to lift me up (very painful), while not understanding that I was hooking my feet under the side of the table to give me stability to use my leg muscles to sit up without tweaking those right side muscles.

We spent more time with me stopping him than it took for me to do it myself. As my business partner, Whimzzie, knows very well – Don’t Help Me !

At any rate, I got home to find that a new paralegal had (finally) answered my email about the status of my car accident case that the lawyer keeps on dropping. Of course, she didn’t actually read the file or any of the receipts and such that I’d sent over in November, so she wanted me to send it all. Again.

Fine.

It was great timing, though, as I was already aggravated from the back pain and that was great motivation to get her what she needed in the hope that a demand for my unreimbursed expenses and a settlement proposal will be finished and finally sent out by the end of this week.

I don’t like to think of myself as money grubbing, but I’ll be glad when all of this is done with, and I can hopefully get the $2k I’m out of pocket to put against my car loan, or home repairs, or mortgage payments.

Whatever the money goes toward, I’ll be glad to get the case behind me as all this paperwork is not worth the aggravation – especially when the pain is aggravating enough.

And, you know The Hartford folks will try and claw back funds from any money that I eventually receive from the Gekko insurance company. I, meanwhile, spent today’s payday funds on new swimsuits for the Summer / January’s cruise, and made sure that not all of my budget went for sensible choices, LOL.

Palliative Care Service Offerings

Making Progress in Managing my Pain

As part of dealing with the flare of back pain, incontinence, and swampy lungs I’ve been dealing with for the past couple of weeks, I’ve been dragging my feet about asking my pulmonologist about a referral to the palliative care team as the last time I requested it (about a year ago), he was very much against it.

I’ve been dealing with my pulmonologist with regard to managing my end of life / euthanasia wishes through a number of quick and dirty skirmishes over the years.

Let me make it clear – I am the worst patient out there. I’m opinionated. Stubborn. And there’s ton’s of things that I just won’t do or try even if they might alleviate my (whatever – there’s too many different situations going on) to make me a good patient.

That being said, though, I’ve been with this guy since 1992. We’ve survived the “You’re going to die if you don’t do exactly what I tell you to do” fight, and we’ve learned to laugh at my stubbornness as I’m still here 25 years after our last knock down drag out ” I am the doctor ! ” debate over my care choices.

Anyway, as I wrote in a different post, I had to have the doc process the necessary forms to continue my disability benefits, and we talked about the fact that I’m having a pain flare that’s impacting my quality of life to the point where I need to research new options and alternatives as the issues appear to involve my spine and neuropathy in my feet vs. it being centered on my heart and lungs.

While my doc has softened his views about euthanasia, he is still adamant that it’s not for me. As my End of Life Doula seems to believe, we’ve been together for almost 30 years at this point, and he doesn’t want me to go. I don’t think that’s the issue so much as his focus is on keeping me alive until medical science delivers new treatments that may work for me (what he said back in 2015, when I was asking about lung ablations and stem cell treatments).

Whatever the issue may be, though, I don’t want to lose him as a primary care physician as my most pressing issue is my ability to breathe.

Over the last couple of weeks, going to exercise class has been challenging as my oxygen saturation have been dropping quickly and crazily:

Oxygen Saturation during exercise: 08-APR-21

I have got to get an ox sat watch (like a fitbit) that will give me continual readings discretely, via my phone, without needing the oximeter.

I’ve been in a lot of pain overnight. Lot of pain getting up and down from the toilet (man, who knew that used so many torso muscles?). The lung pain has quit, but I am looking forward to getting the MRI at some point in May so that we can figure out if there’s anything specific going on with my spine and right side, or if it’s just more of the same old, same old.

Luckily, my ox sat rates are mostly staying in the 90’s and not falling as low as 83 / 84 while exercising, but I am very grateful that the doc has FINALLY approved my wish to try the palliative care team to get their assessment of what’s going on, and whether or not I’m being a jerk in refusing to go on injectable insulin.

Ultimately, though, I’ve decided I’m done with anything that doesn’t serve me, and pain is never going to be high on my list of things to deal with.

Let’s hope the palliative care team will accept me after the referral is received, and that they have some options for helping me feel better despite my challenges.

Audit and Disability

It’s that time of year – Fakers R Us is back to harass me

Being disabled, even if mine is largely invisible as I don’t use a wheelchair or a walker, I do have private conversations with many friends who are also injured or disabled, and their frustrations with trying to live their lives to the best of their ability.

This year, the long term disability / supplemental salary insurance company (which has changed from Aetna to The Hartford) threw me a curve ball during the audit by contacting me directly vs. going through my lawyer.

They know better, but they believe they are a law unto themselves and my mental health is something they are regularly attacking in an effort to get me to give up and go away.

In particular, I don’t have a lot of extra energy, so I rarely open the mail (bills) and try to deal with them once a month, when I get paid.

The bill I thought was for Medicare’s Supplemental Drug plan (which is auto paid online) was actually a request for proof of disability from The Hartford, which was sent on 3/1 and which was due 4/21. Since I didn’t even bother to open the mail until 4/9, I immediately had a minor hissy fit because I keep thinking Aetna is who I’m still dealing with, even though my employer has changed insurance companies. Yes, it’s my bad.

But, there is nothing guaranteed to make me see red faster than to deal with their games of bypassing the lawyers to come directly to me, hoping that I will miss deadlines and cause my ongoing claim to be denied. In particular, their oh-so-condescending verbiage on the letter just fans the flames of my frustration:

“If an APs and LTD Claimant Questionnaire form are not received in this office by 4/30/2021, we will assume that you do not wish to pursue your claim and your LTD benefits will be terminated accordingly.”

Maddening.

So, I had to chase the lawyer to let them know I was being contacted improperly, and to ask them to reach out and remind The Hartford that they are not to write me directly. Then, I began the long, aggravating process to answer all their infernal questions (Do you need help with finances? Who cleans your house? Do you need help with toileting? What can you no longer do that you used to do?).

Absolutely maddening ! and frustrating, as I try every day to ignore my breathing issues and related health challenges, and yet here I have to talk about it at least once a year, while confirming that I’m not a goldbrick faker, and that I’m not dead yet, so they need to keep paying me.

At any rate, one of my friends has been disabled since 1984 / 1985, and she was covered by a union contract which guaranteed her disability payments through age 72. My friend has an ostomy bag, surgery-induced Type 3 diabetes, and is a hospital frequent flier due to her ongoing disability issues related to PTSD from the treatments, as well as the daily pain she is in. However, she also goes through the same intrusive types of questions that aggravate the heck out of me, but the new twist is that she has been told that her union employer has changed insurance companies, and that she is no longer able to be covered until age 72, but now is only covered to age 65.

I find it funny that we cannot retire as workers until our age group reaches age 67, but the insurance company thinks it can get away with reducing benefits as of age 65.

Additionally, there is no question that she should be grandfathered in under the original union contract and retain her benefits until age 72, but they are going to war over that question in the hope she will give up and go away.

Imagine my surprise when I was researching ERISA laws today (the fiduciary legislation under which we all purchase or receive insurance coverage from our employers), and found that a Judge in Canada has finally decided enough is enough for trying to abuse their insureds receiving disability.

Yay ! A strike for the little guy !

It doesn’t yet help us here in America, but I’m hopeful that these aggravating battles of the forms from Insurance companies who are determined to treat us all as deadbeats will be reviewed and their heinous decisions repealed on review.

Greig v Desjardins, 2019, BCSC 1758: An assessment of damages for breach of good faith by disability insurance company

Luckily, in researching good faith and fair dealing in terms of insurance claims, it looks like the courts are waking up to the unfair and profitable tactics insurance companies are using to deny benefits:

CACI No. 2331 – Breach of the implied obligation of good faith and fair dealing

Let’s hope my lawyers continue to win and my disability income continues until I pass away or until I reach age 67. Either way, it’s frightening to try and live when you don’t know how you will succeed financially for planning your day to day realities, and having my friend’s benefits be threatened under her wellness audit in another state, it gets scary for all of us.