Saturday, December 10, 2011
Shawn's new site at Caring Bridge
Shawn just started a new site at Caring Bridge - follow him there at http://caringbridge.org/visit/shawngilley.
Monday, December 5, 2011
Painful Reminders
The theme of the past five years has been I just need a diagnosis. After all, I can deal with anything if I just know what I'm dealing with. I'm certainly not going to say that it was better not knowing. In fact, I'm fairly comfortable describing that particular experience as a shit-filled nightmare lasting far longer than one ever thought could be possible.
That being said, this past month or so has been a reminder of what our reality is. The stress MRI found no treatable causes of the heart failure (blocked arteries, etc.) and thus, the assumption is that it's either a result of the beating the heart took over the past few years or it's directly related to the cancer. The good news is that the treatment is proving to hold the cardiac function normal and band-aid fix or not, I'll take it.
The MRI also showed that even with normal function, the heart is still enlarged, however, which is not great. Essentially, if you think of the heart as a balloon, a blockage could cause it to temporarily inflate and upon removing the blockage, the balloon returns back to its normal elasticity. However, if the balloon is over-inflated for too long, it becomes permanently stretched out and worn. So I can add living with heart failure to my list of things to deal with.
What's been most hard on myself and my family is the reminder that this is my life now. When we didn't know what was wrong, we could hope that they'll find this easily treatable thing that'll allow me to resume the life I had before this. And still after the carcinoid cancer diagnosis, every reminder that my life will never return to "normal" forces us to watch that hope we carried for so long shatter all over again. It happened when I picked up the paperwork from the oncologist with the diagnosis "metastatic carcinoid cancer". It happened with these recent tests where we somehow thought that maybe the heart failure was reversible. And it happened when after not being able to digest any food for a week, my oncologist said that the carcinoid syndrome will break through occasionally and there's not much we can do about that.
I've spent a lot of time mulling this over and I think what's so hard is the fact that I'm mourning the loss of the life I thought I'd have. I don't have the energy I used to. I will never be able to work full time due to the extreme fatigue from the medications and the disease itself. I have to exercise every single day because not only does it help maintain my appetite but the moment I stop, my muscles will shrivel to nothing.
But while I do get frustrated with certain realities, I have not let that stop me from creating a new life and planning a future with my new limitations. I do freelance copy writing for a local marketing firm, I teach religious school at the temple, I continue to supply my producer with new songs and I am in the midst of writing a book about this saga. Make no mistake about it, I can be knocked down over and over again but I will never stop standing back up.
That being said, this past month or so has been a reminder of what our reality is. The stress MRI found no treatable causes of the heart failure (blocked arteries, etc.) and thus, the assumption is that it's either a result of the beating the heart took over the past few years or it's directly related to the cancer. The good news is that the treatment is proving to hold the cardiac function normal and band-aid fix or not, I'll take it.
The MRI also showed that even with normal function, the heart is still enlarged, however, which is not great. Essentially, if you think of the heart as a balloon, a blockage could cause it to temporarily inflate and upon removing the blockage, the balloon returns back to its normal elasticity. However, if the balloon is over-inflated for too long, it becomes permanently stretched out and worn. So I can add living with heart failure to my list of things to deal with.
What's been most hard on myself and my family is the reminder that this is my life now. When we didn't know what was wrong, we could hope that they'll find this easily treatable thing that'll allow me to resume the life I had before this. And still after the carcinoid cancer diagnosis, every reminder that my life will never return to "normal" forces us to watch that hope we carried for so long shatter all over again. It happened when I picked up the paperwork from the oncologist with the diagnosis "metastatic carcinoid cancer". It happened with these recent tests where we somehow thought that maybe the heart failure was reversible. And it happened when after not being able to digest any food for a week, my oncologist said that the carcinoid syndrome will break through occasionally and there's not much we can do about that.
I've spent a lot of time mulling this over and I think what's so hard is the fact that I'm mourning the loss of the life I thought I'd have. I don't have the energy I used to. I will never be able to work full time due to the extreme fatigue from the medications and the disease itself. I have to exercise every single day because not only does it help maintain my appetite but the moment I stop, my muscles will shrivel to nothing.
But while I do get frustrated with certain realities, I have not let that stop me from creating a new life and planning a future with my new limitations. I do freelance copy writing for a local marketing firm, I teach religious school at the temple, I continue to supply my producer with new songs and I am in the midst of writing a book about this saga. Make no mistake about it, I can be knocked down over and over again but I will never stop standing back up.
Friday, November 18, 2011
The Saga Continues...
It's been a while since I've posted anything up here, which actually is good news. For the first time in years, things have been pretty stable. Every three weeks, I go in for my lovely treatment (hint - lovely is definitely an insert for another word) and every six weeks or so, I visit with my oncologist to make sure everything is working correctly. So far, the treatment has definitely kept things from visibly growing on the CT scans and given that that's all they can do for metastatic carcinoids, I'll happily accept those results.
Now those of you who have been following this journey over the past few years know how difficult it has been going between doctors and keeping them all in communication with each other. That's why I chose to see a primary care physician in the same practice as my nephrologist who is the one who referred me to my oncologist. With everyone under the same roof, the communication is much more efficient and overall easier on me.
The last month or so though, I began to feel short of breath throughout the day and was having more and more trouble doing my daily exercise. I was also getting more swollen and having a lot of trouble sleeping without being propped up. When I saw my primary care doc, I told her about my shortness of breath and she listened to my heart and lungs, expressing concern over what she heard. Also, with carcinoids there's something called carcinoid heart disease where the excess hormones cause plaque like build up in the valves and consequently destroy them.
So she sent me to get an echocardiogram and my oncologist sent me to a pulmonologist and to have a pulmonary function test. Now at this point in the story I know it's beginning to sound like the diagnostic circles we have been running over the past few years where I have a symptom, doctors order tests and consults, everything comes back normal and they remain confused over the symptom.
Interestingly, this is the first time in as long as I can remember that that was not the outcome. My primary doc called me to say that while there was no evidence of the typical carcinoid heart disease, my heart in general wasn't pumping hard enough and as a result, is causing fluid buildup in my lungs and other extremities. She said she had reviewed the echo with the cardiologist in their practice and he wanted to see me.
So yesterday, I met with the cardiologist who explained that on my echo in 2009, my ejection fraction (the % of blood pumped out of the heart, normal being anything over 55% but ideally between 60-65%) was 65%. In 2010, my ejection fraction was the very border of normal at 55% and as of a few weeks ago, has now dipped to a troubling 41%. This reduced function is a result of a form of congestive heart failure known as systolic heart failure that he said could be explained by a number of things. It may be from the years of hypertension, though they would expect it to have been worse a few years ago when the blood pressure was out of control. It could also be from the excessive radiation from the high number of scans I've had, though that doesn't seem very likely either. He said he wants to run a stress MRI to see if there are any carcinoids lurking in or around the heart that are damaging it. However, he explained that quite often they don't find the exact cause of heart failure so we may not ever know.
The plan is to treat the heart failure with different blood pressure meds and a diuretic to keep the fluid from piling up. Even after the first day, I slept a million times better waking up only 4-5 times to go to the bathroom verses the 10-15 times I was waking up the past few weeks because I couldn't breathe. I decided that I need a break from hospitals for the week of thanksgiving and will be spending that week with Arie. Then after thanksgiving, I'll be seeing my oncologist and having the stress MRI that Wednesday 11/29.
As thanksgiving is the time to give thanks, I'll tell you exactly what I'm thankful for. I have a group of doctors that are working together to keep me as stable as possible. I have this new cardiologist who spent a lot of time with me and my parents to compassionately explain what's going on and pledge that he'll be spending many late nights doing research to see if there's anything else he can find out about carcinoids and heart failure. I have a wonderful and supportive family and I just celebrated my 4 year anniversary with my beautiful and supportive girlfriend. Yes the saga does continue but there are definitely a myriad of reasons why I can be thankful this turkey day.
Now those of you who have been following this journey over the past few years know how difficult it has been going between doctors and keeping them all in communication with each other. That's why I chose to see a primary care physician in the same practice as my nephrologist who is the one who referred me to my oncologist. With everyone under the same roof, the communication is much more efficient and overall easier on me.
The last month or so though, I began to feel short of breath throughout the day and was having more and more trouble doing my daily exercise. I was also getting more swollen and having a lot of trouble sleeping without being propped up. When I saw my primary care doc, I told her about my shortness of breath and she listened to my heart and lungs, expressing concern over what she heard. Also, with carcinoids there's something called carcinoid heart disease where the excess hormones cause plaque like build up in the valves and consequently destroy them.
So she sent me to get an echocardiogram and my oncologist sent me to a pulmonologist and to have a pulmonary function test. Now at this point in the story I know it's beginning to sound like the diagnostic circles we have been running over the past few years where I have a symptom, doctors order tests and consults, everything comes back normal and they remain confused over the symptom.
Interestingly, this is the first time in as long as I can remember that that was not the outcome. My primary doc called me to say that while there was no evidence of the typical carcinoid heart disease, my heart in general wasn't pumping hard enough and as a result, is causing fluid buildup in my lungs and other extremities. She said she had reviewed the echo with the cardiologist in their practice and he wanted to see me.
So yesterday, I met with the cardiologist who explained that on my echo in 2009, my ejection fraction (the % of blood pumped out of the heart, normal being anything over 55% but ideally between 60-65%) was 65%. In 2010, my ejection fraction was the very border of normal at 55% and as of a few weeks ago, has now dipped to a troubling 41%. This reduced function is a result of a form of congestive heart failure known as systolic heart failure that he said could be explained by a number of things. It may be from the years of hypertension, though they would expect it to have been worse a few years ago when the blood pressure was out of control. It could also be from the excessive radiation from the high number of scans I've had, though that doesn't seem very likely either. He said he wants to run a stress MRI to see if there are any carcinoids lurking in or around the heart that are damaging it. However, he explained that quite often they don't find the exact cause of heart failure so we may not ever know.
The plan is to treat the heart failure with different blood pressure meds and a diuretic to keep the fluid from piling up. Even after the first day, I slept a million times better waking up only 4-5 times to go to the bathroom verses the 10-15 times I was waking up the past few weeks because I couldn't breathe. I decided that I need a break from hospitals for the week of thanksgiving and will be spending that week with Arie. Then after thanksgiving, I'll be seeing my oncologist and having the stress MRI that Wednesday 11/29.
As thanksgiving is the time to give thanks, I'll tell you exactly what I'm thankful for. I have a group of doctors that are working together to keep me as stable as possible. I have this new cardiologist who spent a lot of time with me and my parents to compassionately explain what's going on and pledge that he'll be spending many late nights doing research to see if there's anything else he can find out about carcinoids and heart failure. I have a wonderful and supportive family and I just celebrated my 4 year anniversary with my beautiful and supportive girlfriend. Yes the saga does continue but there are definitely a myriad of reasons why I can be thankful this turkey day.
Wednesday, August 3, 2011
A new chapter - a post by Shawn
A few weeks ago, I met with an oncologist at University of Chicago’s Duchossois Center of Advanced Medicine, which is the home to one of the best oncology centers in the nation. After a brief discussion and a review of my records, this doctor seemed pretty confident in the diagnosis of carcinoid syndrome but to be sure, he wanted to try me on the common treatment and re-run some of the common hormone markers for carcinoids.
Then last Tuesday, July 28th, I sat in his office to experience a first for this horrifying diagnostic experience. First off, my chromagranin A, the blood hormone marker typically elevated in carcinoid patients, was 390 with normal being anything less than 225. In addition, my CT scan of the pelvis and chest showed several abnormalities including two spots on the pelvic bone suspicious for metastatic activity as well as some enlarged lymph nodes in the chest.
“Well Mr. Gilley,” my doctor started. “With these CT findings combined with the abnormal blood work and reaction to the treatment, let’s just call this what it is. It’s carcinoid cancer.”
So here’s where we are. I’m going in every three weeks for the chemotherapy treatment of carcinoid syndrome called sandostatin. To put it simply, it’s a mean son-of-a-bitch of a medicine causing awful stomach cramps, long periods of nausea, and more than anything else, feeling pretty run down.
I will go see the oncologist on a regular basis just like old friends and I’ll also have the pleasure of being on first name basis with all the lovely personnel and in the lab and in radiology.
So here’s the part that I’ve had trouble writing. You see, I can spout out the facts with ease but the tricky part for me is verbalizing my reaction to all of this. Because while I’ve certainly known there’s something wrong for the better part of the last four years, I haven’t had anyone willing to definitively classify it.
I’ve watched the unique ways everyone around me has responded. Some simply want to say it’s great news. While I am absolutely relieved that the searching game we’ve been playing is over, I think I may have a different understanding of great news. You see, getting a dream job, that’s great news. Getting married; that’s splendid. Just bought a new car, well kudos to you. Diagnosed with a remarkably uncommon and infrequently studied cancer, not exactly news worth popping the champagne for.
And yet, there’s the other people who stand there, shuffle their feet awkwardly, fix their gaze on the floor tiles and mutter something about being optimistic that treatment will help and that they’re sorry I’m going through this. Certainly an understandable reaction and in no way am I trying to pass judgment on those who have reacted this way.
Truth be told, I don’t begrudge any of these reactions because really, what the hell do you say to this? We’ve traded the bad news of “I don’t know what’s wrong” for some different bad news.
Here’s my reaction and it’s not simple. Am I relieved? I’m relieved that I know what I’m fighting against. I know what I can do to help myself stay strong and as healthy as possible and I know what the plan is to continuously treat it. And yet, I’m not really happy either.
I’m mad as hell that while my friends are joyously posting pictures and statuses about their first jobs on facebook, I’m being driven to treatments and spending uncanny amounts of time sipping ginger ale and praying to not have to run back to the bathroom. Even more, I’m sitting in my bed with one hand on my stomach thinking about the fact that while we may have a current plan for treatment, there is no plan for ending treatment.
As in, this is it folks. My dreams of being a teacher and working passionately and intensely in a high school classroom, a la Robin Williams in “Dead Poet’s Society”, has shattered like a glass frame holding that aspiration on my mantle.
So my reaction is that after four years of my life revolving around the search for this diagnostic unicorn, I’m trying to figure out what my life is with this less than positive reality permanently affixed to it. I’m putting away old dreams and trying to forge new ones. I’m accepting the pieces of my life that are out of my hands and taking this one-day at a time.
I’m fixating on the truth that I’m extremely lucky to have a girl that has not only stuck by me these past years, but has made even the most miserable times tolerable with her unwavering love and support. More over, I’m appreciating the fact that this illness has made me smart enough to appreciate her and make sure I never take her for granted for even a fraction of a second.
I’m lucky to have parents that sit hours on end in every waiting room of every doctor’s office and testing facility and have been there to support me every step of the way. They’ve been through their own version of hell these past few years that I can’t fathom and I admire them for continuing to wake up each day and simply get out of bed.
Quite honestly, both my family and myself simply need to time to cope and adjust. So be patient and understand that while it’s good news that we know what we’re doing, the hope we’ve been clinging to these past years that maybe this is a simple and curable thing has been taken away. Now we’re left standing here piecing together the silver linings with the unsavory realities.
Then last Tuesday, July 28th, I sat in his office to experience a first for this horrifying diagnostic experience. First off, my chromagranin A, the blood hormone marker typically elevated in carcinoid patients, was 390 with normal being anything less than 225. In addition, my CT scan of the pelvis and chest showed several abnormalities including two spots on the pelvic bone suspicious for metastatic activity as well as some enlarged lymph nodes in the chest.
“Well Mr. Gilley,” my doctor started. “With these CT findings combined with the abnormal blood work and reaction to the treatment, let’s just call this what it is. It’s carcinoid cancer.”
So here’s where we are. I’m going in every three weeks for the chemotherapy treatment of carcinoid syndrome called sandostatin. To put it simply, it’s a mean son-of-a-bitch of a medicine causing awful stomach cramps, long periods of nausea, and more than anything else, feeling pretty run down.
I will go see the oncologist on a regular basis just like old friends and I’ll also have the pleasure of being on first name basis with all the lovely personnel and in the lab and in radiology.
So here’s the part that I’ve had trouble writing. You see, I can spout out the facts with ease but the tricky part for me is verbalizing my reaction to all of this. Because while I’ve certainly known there’s something wrong for the better part of the last four years, I haven’t had anyone willing to definitively classify it.
I’ve watched the unique ways everyone around me has responded. Some simply want to say it’s great news. While I am absolutely relieved that the searching game we’ve been playing is over, I think I may have a different understanding of great news. You see, getting a dream job, that’s great news. Getting married; that’s splendid. Just bought a new car, well kudos to you. Diagnosed with a remarkably uncommon and infrequently studied cancer, not exactly news worth popping the champagne for.
And yet, there’s the other people who stand there, shuffle their feet awkwardly, fix their gaze on the floor tiles and mutter something about being optimistic that treatment will help and that they’re sorry I’m going through this. Certainly an understandable reaction and in no way am I trying to pass judgment on those who have reacted this way.
Truth be told, I don’t begrudge any of these reactions because really, what the hell do you say to this? We’ve traded the bad news of “I don’t know what’s wrong” for some different bad news.
Here’s my reaction and it’s not simple. Am I relieved? I’m relieved that I know what I’m fighting against. I know what I can do to help myself stay strong and as healthy as possible and I know what the plan is to continuously treat it. And yet, I’m not really happy either.
I’m mad as hell that while my friends are joyously posting pictures and statuses about their first jobs on facebook, I’m being driven to treatments and spending uncanny amounts of time sipping ginger ale and praying to not have to run back to the bathroom. Even more, I’m sitting in my bed with one hand on my stomach thinking about the fact that while we may have a current plan for treatment, there is no plan for ending treatment.
As in, this is it folks. My dreams of being a teacher and working passionately and intensely in a high school classroom, a la Robin Williams in “Dead Poet’s Society”, has shattered like a glass frame holding that aspiration on my mantle.
So my reaction is that after four years of my life revolving around the search for this diagnostic unicorn, I’m trying to figure out what my life is with this less than positive reality permanently affixed to it. I’m putting away old dreams and trying to forge new ones. I’m accepting the pieces of my life that are out of my hands and taking this one-day at a time.
I’m fixating on the truth that I’m extremely lucky to have a girl that has not only stuck by me these past years, but has made even the most miserable times tolerable with her unwavering love and support. More over, I’m appreciating the fact that this illness has made me smart enough to appreciate her and make sure I never take her for granted for even a fraction of a second.
I’m lucky to have parents that sit hours on end in every waiting room of every doctor’s office and testing facility and have been there to support me every step of the way. They’ve been through their own version of hell these past few years that I can’t fathom and I admire them for continuing to wake up each day and simply get out of bed.
Quite honestly, both my family and myself simply need to time to cope and adjust. So be patient and understand that while it’s good news that we know what we’re doing, the hope we’ve been clinging to these past years that maybe this is a simple and curable thing has been taken away. Now we’re left standing here piecing together the silver linings with the unsavory realities.
Friday, April 1, 2011
Where We Are - a post by Shawn
Over the past few years, we've been on a diagnostic roller coaster that has lasted far too long. All throughout this time, we've had the mindset that if they could just diagnose this, everything would be better. A few weeks ago, I saw an oncologist in Bloomington and just left his office from a follow up an hour ago. As far as a diagnosis, he is confident in calling this carcincoid syndrome. However, here's the tricky part. Carcinoid syndrome is a paraneoplastic syndrome, which is, "a rare disorders that is triggered by an altered immune system response to cancer." But, treatment for carcinoid syndrome is purely symptomatic. Since carcinoids are wildly small in nature, they are very difficult to find so while my hormone levels associated with carcinoids are high, they don't know where the primary tumor is. I'm going to see an oncologist in Indianapolis for further insight but as of now, the we are no where near the conclusion of this drama.
For the time being, I'm going to do what I've been doing. I'm going to keep working on my degree and maintaining my optimism that some day, I can have a life that doesn't involve spending as much time with doctors as I do with friends.
For the time being, I'm going to do what I've been doing. I'm going to keep working on my degree and maintaining my optimism that some day, I can have a life that doesn't involve spending as much time with doctors as I do with friends.
Tuesday, February 8, 2011
Happy Birthday Shawn
Yesterday was Shawn's 22nd birthday. I spent part of the day looking at old videos:
Thursday, January 13, 2011
update - more waiting
In the past few months, Shawn's seen a few new doctors and has had lots more tests. The current thinking from the gastroenterologist is that his nausea and weight loss are caused by his hypercalcemia. Neurologist likewise believes that neuromuscular problems are due to hypercalcemia.
What remains a mystery is what is causing the hypercalcemia. A new round of blood tests, urine tests, CT scan, xrays failed to help pinpoint the cause.
About a month after the bone scan, Shawn started feeling a new spot on one of the bones of his right hand. Sure enough, it is located right where the scan lit up. What does all this mean? The short answer: more doctors!
We're waiting to hear back now from two new doctors to schedule appointments. One in Bloomington and another at U of C. So for now, more waiting... waiting... waiting...
What remains a mystery is what is causing the hypercalcemia. A new round of blood tests, urine tests, CT scan, xrays failed to help pinpoint the cause.
About a month after the bone scan, Shawn started feeling a new spot on one of the bones of his right hand. Sure enough, it is located right where the scan lit up. What does all this mean? The short answer: more doctors!
We're waiting to hear back now from two new doctors to schedule appointments. One in Bloomington and another at U of C. So for now, more waiting... waiting... waiting...
Thursday, November 25, 2010
Giving thanks
Today I am so very thankful for all the wonderful people in our lives. Happy Thanksgiving to you all.
Thursday, November 4, 2010
new path in this complicated journey
I think the title of this blog is pretty accurate - this has indeed been a journey. A complicated, twisted one - the path curves around this way and that, sometimes crossing itself and going backwards, so that you are never quite sure what is around the next curve.
Tomorrow he's having an xray of the right hand, and meanwhile his doctor wants to talk to a few other doctors before suggesting what to do next.
Besides the xray tomorrow, Shawn also has an appointment with his neurologist next Thursday. Dr. C. doesn't like the exaggerated reflexes he sees in Shawn (hyperreflexia). This has been around for awhile as well, initially the neurologist thought it was Myasthenia. The neuromuscular specialist we saw didn't think that was likely given the EMG results.
So here we are still twisting this way and that on this complex journey.
A few months ago, Shawn noticed some places that feel like bone growths - hard pebbly like structures that you can see and feel - at various spots on his body. One on the back of his skull, one on his ankle, a few on his chest bone. Xrays showed nothing unusual. This week he had a bone scan, which will light up areas of abnormal bone metabolism. The scan lit up in two places - the chest, which makes sense since he feels something there, and his right hand. We aren't sure what to make of this, he's never had any pain in the hand, never seen or felt anything there. Also not sure what this means for the other two spots that didn't show up on the bone scan.
Tomorrow he's having an xray of the right hand, and meanwhile his doctor wants to talk to a few other doctors before suggesting what to do next.
Besides the xray tomorrow, Shawn also has an appointment with his neurologist next Thursday. Dr. C. doesn't like the exaggerated reflexes he sees in Shawn (hyperreflexia). This has been around for awhile as well, initially the neurologist thought it was Myasthenia. The neuromuscular specialist we saw didn't think that was likely given the EMG results.
So here we are still twisting this way and that on this complex journey.
Tuesday, August 24, 2010
Open enrollment also = $$Expensive
Let me make this very clear: I am quite grateful to have insurance at all, especially for Shawn. His pharmacy bill alone would be over $600/month right now without insurance.
On the other hand, my new "exciting" options during open enrollment also managed to pack an "exciting" new price tag. I spent quite a long time trying to figure out what options would make most sense for us, and ended up with a plan very close to what we have right now - all for $400 more a month.
:-(
It feels to me like the insurance company is taking advantage of new healthcare reform to hike up prices.
On the other hand, my new "exciting" options during open enrollment also managed to pack an "exciting" new price tag. I spent quite a long time trying to figure out what options would make most sense for us, and ended up with a plan very close to what we have right now - all for $400 more a month.
:-(
It feels to me like the insurance company is taking advantage of new healthcare reform to hike up prices.
Monday, August 9, 2010
Open Enrollment = Confusion
Open enrollment. My HR website says "All new exciting benefits for 2010/2011" What this really means is "you are about to enter into a strange murky world of non-intelligible double speak which you have to untangle in order to make the right choice."
The good news is, thanks to the health care bill, I no longer have to worry about Shawn's full-time status at school. (The kicker is, for the moment he's actually scheduled to be a full-time student for the first time since Freshman year.) But regardless of his current enrollment, we won't have to start worrying if he ends up dropping a class, so YES, I am still quite thankful for the bill.
The new choices seem straightforward, there is a nice little table with the 8 different policies and key features to compare. It turns out this table is at best useless. At worst, perhaps a little misleading.
There is an HDHP (High Deductible Health Plan) choice, which allows you to also establish an HSA (Health Savings Account). Last year my accountant suggested I look into this type of account, as I spent a considerable amount on medical expenses, but not quite enough to itemize. The nice thing about an HSA account is you can roll over any money left in it from year to year, and it earns interest tax free. Money from the account can be used only for medical expenses. And you can only open one with a corresponding HDHP.
So on to the HDHP. The deductibles on this are $2500 individual/$5000 family. You might think that means that as soon as a single person (individual) on the plan pays more than $2500 that they have met the deductible. I would think that as well. And it seems we would be wrong.
After spending quite a long time talking with a really nice woman from Aetna - one I have every reason to believe knows what she is talking about - I have learned that the HDHP policy has a different definition of family vs. individual deductible than the PPO policies.
The HDHP policy requires the family deductible to be met if the policy is a "family" policy - that is if it covers more than a single person. The PPO deductible is a per/person amount even for a policy that covers more than a single person. So under the PPO, Shawn's deductible will be met when he has more than the individual amount of expenses, while under the HDHP it won't be met until the family limit has been met. This sounds awfully strange to me and possibly I've still got it wrong, but we spent quite a long time talking about this and the representative was pretty specific about it.
Another thing: How you satisify the deductible is different for different plans. For the PPO, pharmacy costs do not count towards the deductible. But for the HDHP, cost of medicine does count towards the deductible.
The nice little table that my HR website has comparing the plans is pretty much meaningless, since the same language means different things for different policies! How you meet a deductible is different, which deductible you have to meet is different, what happens once you meet the deductible is different.
Under the HDHP, you pay full costs for everything until you meet the deductible. Shawn's monthly pharmacy bill alone will be enough to do this within approximately 8 month, even with no other medical expenses. So I know we'll meet the deductible, but then I also know we'll blow through all the money in the HSA.
I started today's call thinking I wanted the HDHP. Now I'm less sure. While the HDHP policy is quit a bit cheaper, the HDHP + HSA together are about the same price as one of the PPOs. And I know I'll use all the money in the HSA, so there will be no chance to roll it over (one of the things that is attractive about an HSA). Which makes it not that different from the higher premium of the PPO, which is also paid in pre-tax dollars.
After spending a few hours on this today, I now think I need to delve into the other differences between the HDHP and PPO coverage of individual expenses. I think I'll be back on the phone again tomorrow with Aetna's customer service.
And in the meantime if anyone out there has any insights or experience with an HDHP plan (especially Aetna's HDHP) please leave a comment below!
The good news is, thanks to the health care bill, I no longer have to worry about Shawn's full-time status at school. (The kicker is, for the moment he's actually scheduled to be a full-time student for the first time since Freshman year.) But regardless of his current enrollment, we won't have to start worrying if he ends up dropping a class, so YES, I am still quite thankful for the bill.
The new choices seem straightforward, there is a nice little table with the 8 different policies and key features to compare. It turns out this table is at best useless. At worst, perhaps a little misleading.
There is an HDHP (High Deductible Health Plan) choice, which allows you to also establish an HSA (Health Savings Account). Last year my accountant suggested I look into this type of account, as I spent a considerable amount on medical expenses, but not quite enough to itemize. The nice thing about an HSA account is you can roll over any money left in it from year to year, and it earns interest tax free. Money from the account can be used only for medical expenses. And you can only open one with a corresponding HDHP.
So on to the HDHP. The deductibles on this are $2500 individual/$5000 family. You might think that means that as soon as a single person (individual) on the plan pays more than $2500 that they have met the deductible. I would think that as well. And it seems we would be wrong.
After spending quite a long time talking with a really nice woman from Aetna - one I have every reason to believe knows what she is talking about - I have learned that the HDHP policy has a different definition of family vs. individual deductible than the PPO policies.
The HDHP policy requires the family deductible to be met if the policy is a "family" policy - that is if it covers more than a single person. The PPO deductible is a per/person amount even for a policy that covers more than a single person. So under the PPO, Shawn's deductible will be met when he has more than the individual amount of expenses, while under the HDHP it won't be met until the family limit has been met. This sounds awfully strange to me and possibly I've still got it wrong, but we spent quite a long time talking about this and the representative was pretty specific about it.
Another thing: How you satisify the deductible is different for different plans. For the PPO, pharmacy costs do not count towards the deductible. But for the HDHP, cost of medicine does count towards the deductible.
The nice little table that my HR website has comparing the plans is pretty much meaningless, since the same language means different things for different policies! How you meet a deductible is different, which deductible you have to meet is different, what happens once you meet the deductible is different.
Under the HDHP, you pay full costs for everything until you meet the deductible. Shawn's monthly pharmacy bill alone will be enough to do this within approximately 8 month, even with no other medical expenses. So I know we'll meet the deductible, but then I also know we'll blow through all the money in the HSA.
I started today's call thinking I wanted the HDHP. Now I'm less sure. While the HDHP policy is quit a bit cheaper, the HDHP + HSA together are about the same price as one of the PPOs. And I know I'll use all the money in the HSA, so there will be no chance to roll it over (one of the things that is attractive about an HSA). Which makes it not that different from the higher premium of the PPO, which is also paid in pre-tax dollars.
After spending a few hours on this today, I now think I need to delve into the other differences between the HDHP and PPO coverage of individual expenses. I think I'll be back on the phone again tomorrow with Aetna's customer service.
And in the meantime if anyone out there has any insights or experience with an HDHP plan (especially Aetna's HDHP) please leave a comment below!
Tuesday, July 6, 2010
catching up
It's been a whirlwind of a month... since breaking my foot Shawn and I have been to: Atlanta, Philadelphia, New York City, Atlantic City, Beach Haven (Long Beach Island), Paramus, Beach Haven, Philadelphia, Chicago! Most of the trip was vacation, with a side trip to a doctor in NY, and the unveiling of my grandmother's gravestone thrown in.
Travel was a little challenging but we made it. I got a knee scooter and was able to walk/scoot more than five miles when we were in NYC. It also allowed me to go back and forth to our favorite seafood place while at the beach. It's not quite as easy as it looks but much easier than crutches.
Shawn's been trying to build up leg muscles and was able to walk quite a bit while at the beach - he has a new crutch that is much more comfortable to use than his cane.
As for the doctor visit, I never really know what to say after seeing a new doctor. He took lots of blood, said this could be like some of the cases he's seen but wasn't really sure, there were a number of things that didn't really fit - which seems to be a recurring theme.
He did switch medicine around quite a bit. Said that some of the medicines were obviously not doing much during an episode and that Shawn's body was fighting them during the rest of the time. Also beta blocker has stopped working once again, as his heart rate was 130 while at the office. So he switched two medicines, dropped one, and started weaning him off another. It all sounded great until the day Shawn started switching medicines. He spent the next day completely wiped out, chest pain and very high blood pressure that lasted hours rather than the normal 20-30 minutes. This caused the doctor to increase dosage of one of the new medicines and also add in another. First day of this new one was not fun, about an hour after taking it Shawn was nauseous, not long after that he was throwing up. Next night he took an anti-nausea medicine before taking it, which completely wiped him out. Since then he's been taking it right before going to bed which seems to be doing a little better.
The doctor says it will be two weeks before we really know if the new meds are working. Thus far, doesn't seem to be doing much that's different than before, but we're only a week into the two week period, so I guess we'll see.
Shawn's been trying to build up leg muscles and was able to walk quite a bit while at the beach - he has a new crutch that is much more comfortable to use than his cane.
As for the doctor visit, I never really know what to say after seeing a new doctor. He took lots of blood, said this could be like some of the cases he's seen but wasn't really sure, there were a number of things that didn't really fit - which seems to be a recurring theme.
He did switch medicine around quite a bit. Said that some of the medicines were obviously not doing much during an episode and that Shawn's body was fighting them during the rest of the time. Also beta blocker has stopped working once again, as his heart rate was 130 while at the office. So he switched two medicines, dropped one, and started weaning him off another. It all sounded great until the day Shawn started switching medicines. He spent the next day completely wiped out, chest pain and very high blood pressure that lasted hours rather than the normal 20-30 minutes. This caused the doctor to increase dosage of one of the new medicines and also add in another. First day of this new one was not fun, about an hour after taking it Shawn was nauseous, not long after that he was throwing up. Next night he took an anti-nausea medicine before taking it, which completely wiped him out. Since then he's been taking it right before going to bed which seems to be doing a little better.
The doctor says it will be two weeks before we really know if the new meds are working. Thus far, doesn't seem to be doing much that's different than before, but we're only a week into the two week period, so I guess we'll see.
Tuesday, June 8, 2010
Happiness
When we lived in England, one of my favorite memories was after having broken my leg, sitting on my couch and listening to Shawn play guitar and sing.
Now here I am again, broken foot this time. But even so, I'm sitting here listening to Shawn play piano and sing. And it occurs to me that as much of a physical and logistic pain the next few weeks will be, right this moment I am happy.
Sent from my iPhone :-)
Sent from my iPhone :-)
just a little added excitement
Tomorrow Shawn and I leave for a three part trip. First, Atlanta - me to stay with my friend, Shawn to attend a conference, followed by a trip to NY to see a doctor, then to the Jersey short to spend time with my family.
So I figured I'd make the trip a little more exciting by first breaking my foot. I have a non-weight bearing cast and crutches. The non-weight bearing part means I get to build up my arm muscles, while simultaneously losing muscle in my left leg.
Never a boring moment.
So I figured I'd make the trip a little more exciting by first breaking my foot. I have a non-weight bearing cast and crutches. The non-weight bearing part means I get to build up my arm muscles, while simultaneously losing muscle in my left leg.
Never a boring moment.
Tuesday, May 4, 2010
Insurance
Shawn got a letter yesterday from our insurance company. As we had appealed their decision to not insure him, I expected the letter was in response to that, saying they would stick with their earlier ruling. But lo and behold - it again said just the opposite! Remember, last time I opened a letter from them, I was assuming it was restating what I had been told on the phone, that they would insure him, but instead it said they were denying coverage. So this time, the letter said they had reversed their earlier decision and WOULD BE INSURING HIM!
The authorization is effective on March 3, 2010, the date he went on COBRA. So now, I have to find out how to get back the last two months of COBRA payments, plus the May payment that was sent in just a few days ago.
Monday, April 19, 2010
CT scan Wednesday
Insurance precertification in hand, Shawn has a CT scan this Wednesday, along with some more blood tests.
Sunday, April 18, 2010
waiting for insurance approval
There is so much I don't understand about the objections I hear about the current health reform bill. But the thing I completely don't understand is when people say that they don't want the government making health care decisions for them. I suppose that when people say that, they think that the alternative is that they themselves are the ones who should make these decisions. And I guess that they must think that is what happens today.
I'm here to tell you otherwise. When it comes to an expensive treatment or test, the one in charge of making decisions today is not the patient. It's the insurance company.
A few weeks ago, Shawn was dehydrated, and many of his labs were elevated, including his calcium level. After modifying his medicine (dropping the most recently added diuretic) the dehydration and most of the lab results improved but his calcium level was higher rather than lower. The sustained hypercalcemia has led Shawn's doctors to look at some other conditions not previously considered. But when his doctor tried to schedule a CT scan, the insurance company requested more information before they would approve. So we are now waiting for the insurance company before the next round of tests can be scheduled.
I see nothing in this current bill that will change this. So I don't understand the argument of "I don't want the government making decisions for me." In fact, the only decision the government will be making in this new bill is that everyone will have insurance coverage in the first place. Then the insurance company gets to decide just like they do today.
And if the doctor and/or patient don't like the insurance company's decision, what can they do? Well, they can sue the insurance company which puts it in the hands of, uhm, the government. That's not new, and also won't be changed by the health care reform.
But what is new is that the insurance company can't decide to just drop the individual when they determine that they are spending too much money on them. And they can't decline to cover someone. In our case, that is worth quite a lot.
I'm here to tell you otherwise. When it comes to an expensive treatment or test, the one in charge of making decisions today is not the patient. It's the insurance company.
A few weeks ago, Shawn was dehydrated, and many of his labs were elevated, including his calcium level. After modifying his medicine (dropping the most recently added diuretic) the dehydration and most of the lab results improved but his calcium level was higher rather than lower. The sustained hypercalcemia has led Shawn's doctors to look at some other conditions not previously considered. But when his doctor tried to schedule a CT scan, the insurance company requested more information before they would approve. So we are now waiting for the insurance company before the next round of tests can be scheduled.
I see nothing in this current bill that will change this. So I don't understand the argument of "I don't want the government making decisions for me." In fact, the only decision the government will be making in this new bill is that everyone will have insurance coverage in the first place. Then the insurance company gets to decide just like they do today.
And if the doctor and/or patient don't like the insurance company's decision, what can they do? Well, they can sue the insurance company which puts it in the hands of, uhm, the government. That's not new, and also won't be changed by the health care reform.
But what is new is that the insurance company can't decide to just drop the individual when they determine that they are spending too much money on them. And they can't decline to cover someone. In our case, that is worth quite a lot.
Friday, April 9, 2010
How about some GREAT NEWS for a change?
SHAWN'S FIRST PUBLISHED SONG JUST HIT iTUNES!!! Ridin' On The Rim - track # 6 on Heartsfield's new album "Here I Am".
Not only did he write this song, he also sings on the track - he is the first voice you hear on at the beginning of each verse.
He wrote this song about 4 years ago, when he was in high school, in the summer between his junior and senior year. The night before we were leaving to go to New Jersey, there was a truck driving by, and someone said it sounded like it was riding on the rim. He liked the phrase, and started writing. He first performed it the next day for my parents and grandmother. When he got to the 2nd verse, he stopped and said "you'll like this, Poppa," then proceded singing the phrase "my girlfriend finds a way to spend all my money."
He recorded this song a few years later, before going back to his sophomore year of college. The person who recorded it thought that a producer friend of his would like it. It turns out this friend was in the process of putting together a new album for Heartsfield. And that's how Ridin' On The Rim made it to Heartsfield's album "Here I Am." A big thanks to Craig for starting the wheels of this particular truck in motion!
So go take a listen, buy the song, rate it on iTunes, and tell all your friends!!!
Or, if you prefer, here's the link to the CDBaby distribution of the album.
Tuesday, March 23, 2010
Thank You, President Obama
As someone who has experienced first hand the issues that surround insurance of dependents who are not full time students, let me tell you this is HUGE. We had a brief glimpse of this last year, when IL passed a law requiring insurance policies to insure all dependents under 26, but there were a few loopholes - one for self-insured companies (which IBM was) and a second one for policies written outside of the state of IL (which my new company's insurance policy is). But now the law is a national one and I can once again insure Shawn without having to worry about how many hours of classes he feels he can handle. (Which has not been full time since his first semester of college.)
I was working earlier and didn't watch the signing, but I just read Obama's speech. I have to admit I cried. I also became a co-signer of the bill - which you can do too by clicking here.
I was working earlier and didn't watch the signing, but I just read Obama's speech. I have to admit I cried. I also became a co-signer of the bill - which you can do too by clicking here.
Friday, March 19, 2010
the state of things...post by Shawn
Seeing as I usually post the medical facts and not much more, I decided I'd explain how things are going. To get these out of the way, I'll go into the less-than-great aspects of this journey. Recently, my nausea has been pretty awful so on top of taking anti-nausea medications every day, I still have a difficult time getting myself to eat. Therefore, my weight has been tumbling off and at this point, I'm below what I weighed in High School (however, that's better than before where I gained a lot of weight). Also, because my muscles have shrunk considerably, I exacerbated an old knee injury and now am walking on a knee full of shredded cartilage and other stuff. Furthermore, my energy levels are extremely low and make it difficult to do everything I need to in a day. Finally, my blood pressure surges over the past few years have been damaging my heart to the point that my heart is enlarged and weaker than before.
However, those who know me know I'm not a negative person and I have found ways the past few years to find the good in all of this. While I know I can't control the wildly fluctuating blood pressure, I can help my cardiac function by keeping a VERY STRICT low sodium and low fat diet. That means I've been staying away from red meat, butter, cheese, milk, bread, etc. I have found that this diet has been helping me to feel a little more energetic. I have tried to attend classes as much as possible this semester and keep up with my school work along with teaching at Edgewood High School (go mustangs!) and teaching at the religious school. I have been able to do these things with some regularity except for the days that I feel worse than usual. And, I have a great group of friends, supportive family, and Arie who have all stuck by me through the countless tests, procedures, surgeries, treatments, etc.
People keep asking me how I am and I'm not sure how to answer that question. I feel like when I tell them I'm doing well, they take that to mean that I feel well, which is not true. Truthfully, I haven't gone a day without pain, nausea, fatigue, etc., in years and have trouble remembering what those feel like. However, I'm doing well IN SPITE of all of this. I'm finding things to do that make me happy, I'm teaching, and I'm spending time with family and friends.
I taught a lesson last week on optimism and one of my students had a great response to what true optimism is. She said that optimism isn't impressive or completely real when everything is going well in your life. Impressive optimism is being able to see the good in things in spite of all of the negative in your life. In my opinion, optimism is vital to making it through any illness and I refuse to let mine go so I guess I'm doing pretty well.
However, those who know me know I'm not a negative person and I have found ways the past few years to find the good in all of this. While I know I can't control the wildly fluctuating blood pressure, I can help my cardiac function by keeping a VERY STRICT low sodium and low fat diet. That means I've been staying away from red meat, butter, cheese, milk, bread, etc. I have found that this diet has been helping me to feel a little more energetic. I have tried to attend classes as much as possible this semester and keep up with my school work along with teaching at Edgewood High School (go mustangs!) and teaching at the religious school. I have been able to do these things with some regularity except for the days that I feel worse than usual. And, I have a great group of friends, supportive family, and Arie who have all stuck by me through the countless tests, procedures, surgeries, treatments, etc.
People keep asking me how I am and I'm not sure how to answer that question. I feel like when I tell them I'm doing well, they take that to mean that I feel well, which is not true. Truthfully, I haven't gone a day without pain, nausea, fatigue, etc., in years and have trouble remembering what those feel like. However, I'm doing well IN SPITE of all of this. I'm finding things to do that make me happy, I'm teaching, and I'm spending time with family and friends.
I taught a lesson last week on optimism and one of my students had a great response to what true optimism is. She said that optimism isn't impressive or completely real when everything is going well in your life. Impressive optimism is being able to see the good in things in spite of all of the negative in your life. In my opinion, optimism is vital to making it through any illness and I refuse to let mine go so I guess I'm doing pretty well.
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