Yesterday a really good friend of mine got some fantastic news. My friend who is an incredible athlete, former NCAA all-american, had gone through several hip surgeries to repair a chronic condition. For the past three years she thought she had to give up being competitive, something that was so integral to how she had defined herself for more than 20 years. Yesterday a visit with her incredible team of doctors yielded the result that she can get after it again! When she called me to share the news I about wanted to jump out of my chair and do a jig; having been in the same situation after surgeries I know how incredible the feeling is when a surgeon says - let it rip. But her situation was a bit different, she still has to take it easy on the run and went through years of slow rehab - it actually got me thinking to how that parallels diabetes.
When I was first diagnosed with diabetes I had no idea what it meant to my life. One of the reasons I signed up for my first Ironman was to prove that I was still the same idiot meathead I had always been and that the disease wouldn't take away my ability to use determination to accomplish my goals. I would think much like any child, parent of child or person who is diagnosed none of really knows what this disease means for our lives.
Over time we learn how to adapt our lifestyles to blood sugar management. I've learned over time what is required to swim, bike and run as well as I can. I've learned over time how to function as well as possible at work without going low or going high. I've learned over time what to look for when I'm going low or high and learned how to control the symptoms when I can't just bury my head in the sand.
As a diabetic we never receive the words from a doctor that "you're you again," but with every passing day and every passing experience that lets us control this disease a bit better we reduce the limitations this disease places on our lifestyle. I know how big a smile my friend will have on her face the first time she really races again; it's alot like the smile I have each time I run because I know, like all of you know that a run for us isn't "just a run."
Friday, October 29, 2010
Wednesday, October 20, 2010
The New Endo
As the knowledge of my disease has progressed the importance of my endo has decreased. Now that I'm pretty patched into the diabetic network I can get the support and knowledge I need from a community of patient and care giver support rather than having to make an appointment to see a white coat. This has created a weird situation where my endo has become more of a gateway to a prescription rather than my outlet of all things diabetes.
On Monday this relationship became abundantly apparent as I met my new KP endocrinologist. Dr. Kantor seemed like a smart enough doctor but when I left the office I had this weird feeling that he could have been a robot and that would have been fine too. He asked me a series of questions about my basal rates, disease progression (to clarify if I had traditional Type 1 or the more recently claimed Latent Adult Onset Type 1 - I'm a traditional T1) and queried me for my bolus ratios. When I told him about my basal rate which is now about 17 units a day of insulin I mentioned that when I did IMCDA my basal rate was closer to 11. He asked about my job, so I told him I now work for a healthcare tech start up and also do work with a non-profit devoted to revolutionizing blood sugar management. At that he realized that I kind of have my sh*t together when it comes to all this and said something like, "it's amazing when a diagnosis like this happens and kind of transforms someone's life." After that it was just all about the prescriptions.
In the hallway I heard him tell his nurse that "I had everything under control and that I even do Ironmans so all I needed was my scripts." But that also brought up the question in my mind - what if I didn't have it all under control. What if I do triathlons, devote my life to healthcare, know my basal rates inside and out but have zero command of blood sugar. This isn't the case but very easily could be. I was surprised my A1c wasn't taken to confirm that I have transformed into this machine of blood sugar management.
I left the KP facility with 9 vials of insulin and 900 test strips realizing my brain had become a walking encyclopedia of type 1 diabetes knowledge. I can tell you the glycemic effect of just about any food, analyze the fat content versus carbohydrate amount in a given item and have full working knowledge of what exercise will do to my metabolic rate. Three plus years of constant knowledge seeking has made me my own walking white coat. Now the challenge is to stay as aware of my body and my disease as I have been so that the I continually expand my ability to manage my disease no matter how solid I have become at that task.
On Monday this relationship became abundantly apparent as I met my new KP endocrinologist. Dr. Kantor seemed like a smart enough doctor but when I left the office I had this weird feeling that he could have been a robot and that would have been fine too. He asked me a series of questions about my basal rates, disease progression (to clarify if I had traditional Type 1 or the more recently claimed Latent Adult Onset Type 1 - I'm a traditional T1) and queried me for my bolus ratios. When I told him about my basal rate which is now about 17 units a day of insulin I mentioned that when I did IMCDA my basal rate was closer to 11. He asked about my job, so I told him I now work for a healthcare tech start up and also do work with a non-profit devoted to revolutionizing blood sugar management. At that he realized that I kind of have my sh*t together when it comes to all this and said something like, "it's amazing when a diagnosis like this happens and kind of transforms someone's life." After that it was just all about the prescriptions.
In the hallway I heard him tell his nurse that "I had everything under control and that I even do Ironmans so all I needed was my scripts." But that also brought up the question in my mind - what if I didn't have it all under control. What if I do triathlons, devote my life to healthcare, know my basal rates inside and out but have zero command of blood sugar. This isn't the case but very easily could be. I was surprised my A1c wasn't taken to confirm that I have transformed into this machine of blood sugar management.
I left the KP facility with 9 vials of insulin and 900 test strips realizing my brain had become a walking encyclopedia of type 1 diabetes knowledge. I can tell you the glycemic effect of just about any food, analyze the fat content versus carbohydrate amount in a given item and have full working knowledge of what exercise will do to my metabolic rate. Three plus years of constant knowledge seeking has made me my own walking white coat. Now the challenge is to stay as aware of my body and my disease as I have been so that the I continually expand my ability to manage my disease no matter how solid I have become at that task.
Monday, October 18, 2010
Insulin - a Great Forecast of Future Healthcare
A week or two ago the NY Times had an amazing article on the history of insulin. Some time ago I wrote about advancements in medical technology that allow me to pursue some of the crazy athletic things I do; but I had kind of taken the discovery of insulin for granted. I forgot that at some point isolating the compound that allows the body to use glucose has allowed all type 1s to live past their first few years with the disease. The article discusses how viscous a killer diabetes was in the early 1900s and basically states insulin was one of the few "once in a generation," drugs that truly changed the world.
The description of children with type 1 in the article is tremendously heart wrenching. The mental image of a 10 year old who is nothing but skin and bones really made me realize how incredible it is that I control my disease with a pump and about 90 years after the discovery of the drug am able to be a muscular 31 year old. None of that would have been possible without a team of canadian doctors - so my heartfelt thanks to that team!
What was really shocking about the article was how strongly it parallels what is occurring today. Much like the treatment for the biggest health risks of the 2000s (obesity, type 2 diabetes, high cholesterol, etc), the management of type 1 required doctors to loosen their grip on the patient and allow them to treat themselves at home. Doctors were terrified that letting their patients inject themselves with insulin would lead to all sorts of down stream ramifications (thankfully I can get an infusion set into my butt cheek as well as a guy who went to Harvard med!). Today, although Doctors are all for eradicating the greatest health risks we face the medical business model doesn't let them be treated as effectively as they otherwise could be.
So anyway, overall a really interesting article that is a great read. The article was written in concert with the launch of a new exhibit about the drug at the New York Historical Society, 2 West 77th Street. "Breakthrough: The Dramatic Story of the Discovery of Insulin," runs through January 31; I'll be sure to get to it when I'm home for the holidays!
The description of children with type 1 in the article is tremendously heart wrenching. The mental image of a 10 year old who is nothing but skin and bones really made me realize how incredible it is that I control my disease with a pump and about 90 years after the discovery of the drug am able to be a muscular 31 year old. None of that would have been possible without a team of canadian doctors - so my heartfelt thanks to that team!
What was really shocking about the article was how strongly it parallels what is occurring today. Much like the treatment for the biggest health risks of the 2000s (obesity, type 2 diabetes, high cholesterol, etc), the management of type 1 required doctors to loosen their grip on the patient and allow them to treat themselves at home. Doctors were terrified that letting their patients inject themselves with insulin would lead to all sorts of down stream ramifications (thankfully I can get an infusion set into my butt cheek as well as a guy who went to Harvard med!). Today, although Doctors are all for eradicating the greatest health risks we face the medical business model doesn't let them be treated as effectively as they otherwise could be.
So anyway, overall a really interesting article that is a great read. The article was written in concert with the launch of a new exhibit about the drug at the New York Historical Society, 2 West 77th Street. "Breakthrough: The Dramatic Story of the Discovery of Insulin," runs through January 31; I'll be sure to get to it when I'm home for the holidays!
Tuesday, October 5, 2010
Ed's adventures in prescriptions fills
As most of my loyal readers know by now I've since left the east coast and the world of PCs for the open air of California and a Mac loving industry (for the record I lasted 12 hours on a Mac!) With the big move came switching pharmacies and transferring my prescriptions from VA to NY to CA. I've also switched insurance and pharmacies so the idea that all of that would have gone smoothly for someone who has encountered more problems with prescription re-fills than NASA does testing flight equipment was probably a stupid thought.
For the past couple weeks I have been getting everything set for my first insulin pick up at Kaiser Permanente (KP). I contacted my new PCP to let him know I would need insulin for October 1st, contacted the KP pharmacy to ask what the protocol was and followed up with CVS to initiate the transfer. Through a series of e-mails, phone calls and follow ups I was assured that I would have a 1 month supply of insulin by September 25th and that not seeing my doctor for the first time until the second week in October was not a problem.
So I hopped on the 38L from work last night and anxiously awaited to hop off the bus at Divisaderio and Geary. An aside, it is really hard to tell what street you're on while riding the bus in SF; I constantly have to look at google maps on my Droid because the street signs aren't consistent and have names, not numbers so I can't just "count." I'm sure eventually I'll know landmarks and stuff or figure out the mystical language other SFers use to know when to get off the bus but for now I rely on technology.
Once off the bus I walked into the KP building, found the pharmacy and got into line. The pharmacy is freaking huge and feels more like a DMV than a CVS, there were about a dozen people waiting in chairs staring at some screen that apparently tells you when your script is ready for pick up and there are windows of tellers - not a nice open desk for you to drop off your script, pick up or pay for stuff I guess. This pharmacy also had the most robust section of contraceptives I've ever seen - no problem with that, KP just offers quite the variety!
Finally I got to window 5, handed the clerk my drivers license and KP insurance card and then I saw her inquisitively looking at the screen. Uhoh, the trouble begins. "What medicine do you need?" I respond insulin - Novolog. "Hmmm, ok there is a note from your doctor but CVS hasn't transferred the scripts yet." I responded, I confirmed everything with my Doc and CVS and have e-mails following up with each, yes those scripts have been transfered. The really nice (seriously) clerk then said "ok let me talk to the pharmacist."
After a couple minutes the clerk came back and said "we would send you up to emergency care to get a script but they are closed." I responded ok, I'm just about out of insulin and will be by tomorrow morning, this is kind of a necessity right now. For the record this was the first time I could actually go to KP to get my script filled, I didn't intentionally wait until I only had 30 units of insulin left - all in my pump. "Ok let me get the pharmacist to talk to you."
Evil pharmacist comes to greet me. "We can't refill your script, it doesn't exist." I responded in a non-elevated tone, that of course it exists, I have e-mails saying so, can pull my old scripts on CVS.com and have an e-mail from my doctor. Evil pharmacist of course doesn't budge so I then get a little agrivated but didn't raise my voice (I'm learning!). So I asked her this; KP is supposed to be all about patient centered care, right? she responds "Yes," and I am the patient, right? again she says, "Yes", so then if in the morning I'm in the hospital because I don't have insulin how does that possibly equate to patient centered care?, she looks slightly annoyed so I close with; I'm pretty sure a dead patient doesn't equal patient centered care. At that she replied "we can't fill your prescription you have to talk to your doctor," and walked away.
My clerk in shining lab coat was way more empathetic and tried to help me out; she asked me what the CVS phone # who held my scripts was, and if I had the RX number in the e-mails from my Doc. I then brought up the e-mail from my Doc on my trusty Droid and showed her the CVS script on the same gift of technology. My CVS script said refills "transferred out," proving they did their job and the e-mail from my Doc said "you are fine to pick up your one month script before seeing me, the endo nurse will follow up and confirm," which she did.
The clerk in a stroke of genius then went to talk to a different pharmacist, this one with a brain, who understood the importance of insulin for a T1 and who realized that this was a system mistake and not some dude on the street trying to score some insulin (because nothing says a fun night like going hypo). After 45 minutes everything was resolved and I did in fact receive the goodness that is synthetic insulin that keeps me going day after day. Sampson hadn't lost his hair. Welcome to a new pharmacy - my adventures continue.
For the past couple weeks I have been getting everything set for my first insulin pick up at Kaiser Permanente (KP). I contacted my new PCP to let him know I would need insulin for October 1st, contacted the KP pharmacy to ask what the protocol was and followed up with CVS to initiate the transfer. Through a series of e-mails, phone calls and follow ups I was assured that I would have a 1 month supply of insulin by September 25th and that not seeing my doctor for the first time until the second week in October was not a problem.
So I hopped on the 38L from work last night and anxiously awaited to hop off the bus at Divisaderio and Geary. An aside, it is really hard to tell what street you're on while riding the bus in SF; I constantly have to look at google maps on my Droid because the street signs aren't consistent and have names, not numbers so I can't just "count." I'm sure eventually I'll know landmarks and stuff or figure out the mystical language other SFers use to know when to get off the bus but for now I rely on technology.
Once off the bus I walked into the KP building, found the pharmacy and got into line. The pharmacy is freaking huge and feels more like a DMV than a CVS, there were about a dozen people waiting in chairs staring at some screen that apparently tells you when your script is ready for pick up and there are windows of tellers - not a nice open desk for you to drop off your script, pick up or pay for stuff I guess. This pharmacy also had the most robust section of contraceptives I've ever seen - no problem with that, KP just offers quite the variety!
Finally I got to window 5, handed the clerk my drivers license and KP insurance card and then I saw her inquisitively looking at the screen. Uhoh, the trouble begins. "What medicine do you need?" I respond insulin - Novolog. "Hmmm, ok there is a note from your doctor but CVS hasn't transferred the scripts yet." I responded, I confirmed everything with my Doc and CVS and have e-mails following up with each, yes those scripts have been transfered. The really nice (seriously) clerk then said "ok let me talk to the pharmacist."
After a couple minutes the clerk came back and said "we would send you up to emergency care to get a script but they are closed." I responded ok, I'm just about out of insulin and will be by tomorrow morning, this is kind of a necessity right now. For the record this was the first time I could actually go to KP to get my script filled, I didn't intentionally wait until I only had 30 units of insulin left - all in my pump. "Ok let me get the pharmacist to talk to you."
Evil pharmacist comes to greet me. "We can't refill your script, it doesn't exist." I responded in a non-elevated tone, that of course it exists, I have e-mails saying so, can pull my old scripts on CVS.com and have an e-mail from my doctor. Evil pharmacist of course doesn't budge so I then get a little agrivated but didn't raise my voice (I'm learning!). So I asked her this; KP is supposed to be all about patient centered care, right? she responds "Yes," and I am the patient, right? again she says, "Yes", so then if in the morning I'm in the hospital because I don't have insulin how does that possibly equate to patient centered care?, she looks slightly annoyed so I close with; I'm pretty sure a dead patient doesn't equal patient centered care. At that she replied "we can't fill your prescription you have to talk to your doctor," and walked away.
My clerk in shining lab coat was way more empathetic and tried to help me out; she asked me what the CVS phone # who held my scripts was, and if I had the RX number in the e-mails from my Doc. I then brought up the e-mail from my Doc on my trusty Droid and showed her the CVS script on the same gift of technology. My CVS script said refills "transferred out," proving they did their job and the e-mail from my Doc said "you are fine to pick up your one month script before seeing me, the endo nurse will follow up and confirm," which she did.
The clerk in a stroke of genius then went to talk to a different pharmacist, this one with a brain, who understood the importance of insulin for a T1 and who realized that this was a system mistake and not some dude on the street trying to score some insulin (because nothing says a fun night like going hypo). After 45 minutes everything was resolved and I did in fact receive the goodness that is synthetic insulin that keeps me going day after day. Sampson hadn't lost his hair. Welcome to a new pharmacy - my adventures continue.
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