My mind races back to that terrible time nearly three years ago as my own health faded toward death. I thank goodness for inquisitive and cautious medical team of dozens (perhaps over a hundred professionals) who together treated me despite conflicting test results and restored my health; modern medicine, which provided the antibiotics and treatments that slayed the bacteria that was killing me; excellent benefits through my employer, which covered the exorbitant costs of my treatment ($200K+); my family, friends, neighbors, coworkers and clients who supported me through the initial months of intense symptoms, bewilderment and incapacitation and subsequently through years of strict protocol toward recovery.
So many things had to fall into place and without them all, I firmly believe I wouldn’t be here today. And I know that there are too many others who could’ve been here, too, but aren’t because something had not fallen into place for them.
Tuesday, December 4, 2018
Monday, July 9, 2018
Record Keeping - Symptoms and Protocol...
As I’ve said before, I like working with data. In fact, that’s what I do for a living, and from time to time, that's what I do for fun, too. I’ve tracked gas mileage based on receipts for several years, for fun. I’ve gathered scoresheets from my sons’ hockey games and tallied up points per player at season's end, for fun. Well, as my ordeal unfolded, I found myself needing to keep track of two sets of information on a daily basis: symptoms and protocol.
Recall that Dr Lyme#3 based diagnosis and treatment very heavily on my symptoms. In fact, I had to provide a rather lengthy and detailed history of symptoms before he took me on as a patient. He made it clear that I would need to maintain a log of symptoms - what they were, when they happened, and how intense they were - so that he could evaluate progress and adjust my protocol accordingly. My symptoms would come and go and return again, so I needed to keep track of those symptoms daily in a way that was pretty flexible on entry and easy to review at a glance.
Protocol, the schedule for taking treatments including dosage, was going to be fairly complicated. My treatments included antibiotics, probiotics, vitamins, minerals, anti-inflammatories, sleeping aids, and detoxification and the schedule for taking those treatments would be all over the place. Some treatments would be taken intermittently over a three to four week cycle while other treatments would be taken daily. Fortunately, the protocol would usually be set for several cycles into the future during my appointments with Dr Lyme#3. So, I didn’t need flexibility on daily entry. No, instead I needed to be able to set the protocol up front, then refer to it daily to see what I needed to take.
I first tried to keep track of symptoms and protocol separately. I tracked my symptoms as a document on my iPhone, but it became clear after about two days that that approach was going to be terrible if I kept at it much longer because it wasn’t easy for me to see several days worth of symptoms at a glance. And as for my protocol, Dr Lyme#3 had provided a color-coded document that described treatments over multiple cycles, but I had to perform non-trivial calculations to determine what I needed to take on a given day. So, I pondered options.
I know that there must be apps out there that I could use for keeping track of symptoms and protocol, but I suspected that each would require a bit of fiddling to get symptoms with severity and protocol into the app. Inevitably there would be some sort of glitch on some update down the road, too. Quite frankly, I didn’t want to deal with an app if I didn’t need to, and I had a feeling that there was indeed a better way to record keeping somewhere.
I thought about transforming the color-coded document from Dr Lyme#3 into something else, something that would show protocol very clearly for each day in the cycle. A spreadsheet would work. I set up the treatment with dosage as columns and dates in the cycle as rows, then I greyed out cells where treatment wasn’t called for. That looked better - it was clearer to me what I needed to take each day. After I created the spreadsheet, I realized that I could write my symptoms across the row for the day, too. I could use similar short-hand as I liked to make that happen more easily. And as an added bonus, I could color-code the day for my scheduled labs in the spreadsheet, too! So that's what I did.
Nowadays, I enter my protocol from Dr Lyme#3 using my laptop and Google Sheets available via Google Drive as a single cycle per spreadsheet. I try to get treatments that are on the same schedule listed next to each other in the spreadsheet - it's easier for me to read it that way. I print off the current spreadsheet in landscape to fit on a single page and provide as much room as possible to enter symptoms in each day's row. Thereafter, I enter my symptoms in pen daily into the printed off spreadsheet. I hold onto the completed spreadsheets and I usually provide copies at my subsequent appointment with Dr Lyme#3. I should scan the completed spreadsheets, just in case the originals become lost, but I just haven’t gotten around to doing that, yet.
I have found this approach to be a low cost and relatively low effort way to keep track of very important information regarding my symptoms and protocol and I have made available a sample spreadsheet for you to review, download and use, however you like. Please let me know if you recommend another approach.
Recall that Dr Lyme#3 based diagnosis and treatment very heavily on my symptoms. In fact, I had to provide a rather lengthy and detailed history of symptoms before he took me on as a patient. He made it clear that I would need to maintain a log of symptoms - what they were, when they happened, and how intense they were - so that he could evaluate progress and adjust my protocol accordingly. My symptoms would come and go and return again, so I needed to keep track of those symptoms daily in a way that was pretty flexible on entry and easy to review at a glance.
Protocol, the schedule for taking treatments including dosage, was going to be fairly complicated. My treatments included antibiotics, probiotics, vitamins, minerals, anti-inflammatories, sleeping aids, and detoxification and the schedule for taking those treatments would be all over the place. Some treatments would be taken intermittently over a three to four week cycle while other treatments would be taken daily. Fortunately, the protocol would usually be set for several cycles into the future during my appointments with Dr Lyme#3. So, I didn’t need flexibility on daily entry. No, instead I needed to be able to set the protocol up front, then refer to it daily to see what I needed to take.
I first tried to keep track of symptoms and protocol separately. I tracked my symptoms as a document on my iPhone, but it became clear after about two days that that approach was going to be terrible if I kept at it much longer because it wasn’t easy for me to see several days worth of symptoms at a glance. And as for my protocol, Dr Lyme#3 had provided a color-coded document that described treatments over multiple cycles, but I had to perform non-trivial calculations to determine what I needed to take on a given day. So, I pondered options.
I know that there must be apps out there that I could use for keeping track of symptoms and protocol, but I suspected that each would require a bit of fiddling to get symptoms with severity and protocol into the app. Inevitably there would be some sort of glitch on some update down the road, too. Quite frankly, I didn’t want to deal with an app if I didn’t need to, and I had a feeling that there was indeed a better way to record keeping somewhere.
I thought about transforming the color-coded document from Dr Lyme#3 into something else, something that would show protocol very clearly for each day in the cycle. A spreadsheet would work. I set up the treatment with dosage as columns and dates in the cycle as rows, then I greyed out cells where treatment wasn’t called for. That looked better - it was clearer to me what I needed to take each day. After I created the spreadsheet, I realized that I could write my symptoms across the row for the day, too. I could use similar short-hand as I liked to make that happen more easily. And as an added bonus, I could color-code the day for my scheduled labs in the spreadsheet, too! So that's what I did.
Nowadays, I enter my protocol from Dr Lyme#3 using my laptop and Google Sheets available via Google Drive as a single cycle per spreadsheet. I try to get treatments that are on the same schedule listed next to each other in the spreadsheet - it's easier for me to read it that way. I print off the current spreadsheet in landscape to fit on a single page and provide as much room as possible to enter symptoms in each day's row. Thereafter, I enter my symptoms in pen daily into the printed off spreadsheet. I hold onto the completed spreadsheets and I usually provide copies at my subsequent appointment with Dr Lyme#3. I should scan the completed spreadsheets, just in case the originals become lost, but I just haven’t gotten around to doing that, yet.
I have found this approach to be a low cost and relatively low effort way to keep track of very important information regarding my symptoms and protocol and I have made available a sample spreadsheet for you to review, download and use, however you like. Please let me know if you recommend another approach.
Thursday, May 17, 2018
Total Financial Cost...
This post has been a long time coming. I have wanted to offer a breakdown of the costs associated with saving my own life from tick-borne illness in terms that everyone could related to - money. So, I offer you a breakdown of financial cost due to medical services, financial cost due to treatments and lost time. The financial costs are measured in US dollars based on the cost before insurance coverage, if any, kicked in. The lost time from work is measured in work-hours. You could calculate cost based on any rate you choose - perhaps your own rate.
My hope is that these costs will resonate with you and that you will share this information and begin to ponder - how would you handle costs and down time like this?, is that approach workable? what could you do to make things better for you and those you love in case something like this happens?
COST OF MEDICAL SERVICES
I just pulled my insurance records... and guess what?! There are a lot of records! Since this ordeal started, I've had so many appointments with specialists and my new general practitioner, surgeries (including placement of the pacemaker that stands ready to kick in if/when necessary), inconvenient trips to the emergency room where I thought I was going to die of a heart attack, and labs and other diagnostic services. The records show over 200 claims, not including the 10 or so visits to Dr Lyme#3, who does not take insurance. Total cost...
$175,857.71
COST OF TREATMENTS
This total was such a pain to gather, just letting you know. I have included a summary below, but overall there are over 30 different treatments (over 40 if you consider variations in dosage). The most expensive one is daraprim - coming in at $47,000, but there are a few others that ran over $1,000. Costs are based on comparison shopping on the internet for average - not minimum, not maximum. Total cost...
$68,500 (+/- ~$10,000)
LOST TIME FROM WORK
This total covers only time when I was out of work due to the initial phase of my ordeal and subsequent medical services. It does not cover lost personal time like missing my boys' hockey games because I was laid up in the hospital with a heart rate in the 40s, or inability to perform chores and parental responsibilities due to exhaustion and other symptoms. Total time...
300 hours (+/- ~20hrs)
TOTAL FINANCIAL COST
$244,345.71 + (300 hours x <hourly rate>)
Very fortunately for me and my family, we avoided financial ruin because I had (and continue to have) very good benefits through my employer, so my out of pocket costs - though great relative to common household expenses - were significantly less than they could have been otherwise. I also had (and continue to have) very understanding and supportive leaders, clients and team members, so I didn't lose my job either. And I didn't lose my insurance, so that's very good, too.
If you like, please feel free to leave a comment and I'll get back to you. Later.
And here's the treatment summary.
My hope is that these costs will resonate with you and that you will share this information and begin to ponder - how would you handle costs and down time like this?, is that approach workable? what could you do to make things better for you and those you love in case something like this happens?
COST OF MEDICAL SERVICES
I just pulled my insurance records... and guess what?! There are a lot of records! Since this ordeal started, I've had so many appointments with specialists and my new general practitioner, surgeries (including placement of the pacemaker that stands ready to kick in if/when necessary), inconvenient trips to the emergency room where I thought I was going to die of a heart attack, and labs and other diagnostic services. The records show over 200 claims, not including the 10 or so visits to Dr Lyme#3, who does not take insurance. Total cost...
$175,857.71
COST OF TREATMENTS
This total was such a pain to gather, just letting you know. I have included a summary below, but overall there are over 30 different treatments (over 40 if you consider variations in dosage). The most expensive one is daraprim - coming in at $47,000, but there are a few others that ran over $1,000. Costs are based on comparison shopping on the internet for average - not minimum, not maximum. Total cost...
$68,500 (+/- ~$10,000)
LOST TIME FROM WORK
This total covers only time when I was out of work due to the initial phase of my ordeal and subsequent medical services. It does not cover lost personal time like missing my boys' hockey games because I was laid up in the hospital with a heart rate in the 40s, or inability to perform chores and parental responsibilities due to exhaustion and other symptoms. Total time...
300 hours (+/- ~20hrs)
TOTAL FINANCIAL COST
$244,345.71 + (300 hours x <hourly rate>)
Very fortunately for me and my family, we avoided financial ruin because I had (and continue to have) very good benefits through my employer, so my out of pocket costs - though great relative to common household expenses - were significantly less than they could have been otherwise. I also had (and continue to have) very understanding and supportive leaders, clients and team members, so I didn't lose my job either. And I didn't lose my insurance, so that's very good, too.
If you like, please feel free to leave a comment and I'll get back to you. Later.
And here's the treatment summary.
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