This year I am grappling with a severe bleeding problem linked to uterine fibroid tumors. There is a whole cascade of events that led to this monthly hemorrhaging issue: oral contraceptives caused a blood clot that led to a pulmonary embolism that led to a year of blood thinning medication that made the bleeding worse.
I met with two surgeons in the past year in an attempt to address this problem. One lost my confidence when he failed to communicate with my hematologist, and I canceled surgery. The other suggested using a progesterone IUD until I was off of the blood thinner and able to have a safer surgery.
Fortunately, I saw my hematologist the day after a particularly bad bleeding episode which expelled the IUD. I was very weak and my INR had shot up due to the great blood loss. She insisted I have surgery as soon as possible to address this problem. For the first time that I can recall, a doctor related my inability to resolve blood disorders to this monthly bleeding problem.
The hematologist recommended a surgeon at her hospital. Everyone pushed their schedules so I could coordinate a surgery by late August. My COBRA insurance expires at the end of September.
I rushed to gather images, wean off of blood thinners, take additional blood tests, arrange to have someone pick me up the day of the procedure, notify the insurance company, and meet with the surgeon and hematologist to get clearance for surgery. I even learned how to self-inject Lovenox -- something I never thought I would be able to do. It was a lot of work.
Despite some minor drama with a persistently low iron level, anemia, and a positive D dimer test (an indicator of too much clotting material in the blood), my hematologist continued to advocate for the surgery and provided detailed instructions for addressing the clotting risk during and after the procedure.
Finally, I got clearance and went to the hospital anxious but glad that this problem would soon be resolved.
When I woke from anesthesia, I was a bit groggy and nauseous but delighted that my long odyssey was over. My dear friend showed up and we giggled as I drank ginger ale and read aloud post-op instructions to "not put things in the vagina for a week."
Then my surgeon entered the room and informed me that she had bad news. She was not able to remove the fibroid because it was too large. To get it out, a different type of surgery would have been required. There were options we needed to discuss at a later time, such as trying Lupron shots or a surgery involving an abdominal incision.
I was shocked and horrified. I would have to write a big check to pay for an unsuccessful surgery and self-inject Lovenox for the next month, yet the problem remained. Worse, I would lose my COBRA and have to resort to some crappy insurance that would probably cover a far smaller fraction of another surgery cost (if any).
Fortunately, I was too groggy to worry about these implications.
My dear friend took me home and fed me bread. I sat on the couch for an hour, and then felt like taking a walk. It was a beautiful day.
Since the operation didn't involve any cutting, I felt pretty normal. We went to the park and hit the Barney's Warehouse sale.
At least the recovery was better than expected.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Sunday, August 29, 2010
Friday, February 19, 2010
Compromise
A popular message in American media is the triumph of a unique individual against conformity. This theme is played out in many forms, such as the nerd against the elite clique, the scrappy entrepreneur against the corporation, or the parent who decides to home school.
This year, I had a pulmonary embolism and thereafter entered the uncomfortable world of medical compromises. A medication I used to address hemorrhaging from a fibroid tumor was a contributing factor to the embolism, so I am no longer able to use that medication. Nor am I able to take the medication used to control the pain associated with the condition.
As a result, these serious fibroid-related side effects went untreated and became distressing. I found myself with few options to address the problem and agreed to a surgery that I had refused several years ago.
Relatives in the medical field urged me to see one of my uncle's colleagues for a second opinion. I canceled the surgery (which took several months to schedule) and traveled to Baltimore. The new surgeon considered the procedure far too risky for someone on blood thinners and recommended a progesterone IUD instead.
An IUD is one of the last things I ever imagined acquiring. In my mind they were tied to major gynecological problems. I already have major gynecological problems. Why would I invite Pandora's Box to reside in my womb?
The lack of options to address my problem led me to accept a solution that looks like another problem.
The insertion did not go well. Among other unpleasantries, it involved a shot in the hoo-ha. From that moment on, my body shook throughout the procedure. As I laid supine on the exam table, I imagined running from the room on my buttocks like a cartoon character I saw in Tex Avery's Rock-A-Bye-Bear.
I expected to have cramps during and shortly after the insertion, but I didn't expect them to last for several days. The pain was distracting, and I probably focused on it more than I usually would because I distrust the device that had been inserted into my body. There was very little in the drug literature about persistent cramping, except with regard to lower abdominal pain as an indication of a PID (which is a recognized side effect).
My mother happened to call a couple of days after the procedure, and I ended up confessing to her my distress. Generally, I avoid telling her about any problems because she is incapable of offering sound advice. Her remarks, which tend to reflect poor judgment and her removal from mainstream intelligence (this is someone who doesn't use an ATM, cell phone, or computer), usually are not helpful and tend to result in more frustration. That I told her about the pain, my concerns about the device, and my overall sadness about my life-long struggle with gynecological problems indicates my desperation.
I'm not sure why, but after hanging up with her the idea crossed my mind that I had acted like the conformist derided in the popular American cinematic and literary narrative. Instead of being a Norma Rae or Karen Silkwood who fights for my medical options, I succumbed to a procedure I really didn't want. In fact, I paid a $95 co-pay for it.
As I pondered this idea, I began to realize that the notion of people becoming medical consumers who have control over their care and health costs is deeply flawed. In what realistic scenario am I going to know which tests are necessary, how much they should cost, and which labs charge reasonable fees? In light of my long-term medical odyssey in which I have researched my ailments and current treatments, it is remarkable that I hadn't recognized this before.
It is virtually impossible for anyone other than a medical professional to know the panoply of medical options available to patients, especially when the need for treatment is pressing. Insurance companies tend to not cover experimental treatments, so options are limited by their designations of appropriate treatment. Now my medical options are further narrowed by another medical condition and the medication used to treat it. In fact, the extreme complications raised by these factors led me to surrender to the advice of the best doctor I could find.
It isn't reasonable to expect every person to acquire the expertise of a doctor to address their health needs. I go to a doctor because I am not a doctor.
This line of thinking made me reconsider the American narrative of the rugged individualist fighting the system. In many cases, the likely outcome is that the nerd would be better off avoiding conflict rather than risk getting crushed by those who are stronger, the Norma Rae is a crackpot fighting a lost cause based on faulty arguments, and the home schooling mother is an unqualified educator doing her children a disservice. Perhaps by focusing on the triumph of a maverick the expectations for ethics, collective expertise (such as those that inform medical and insurance decisions), and educational standards have been allowed to plummet.
Being the leader who fights the system is admirable in some situations. But it really shouldn't be the expected default when the system is deeply flawed, especially in a world where companies drop your service or charge a fee when you complain to customer service.
It's a sad fact that sometimes it makes more sense to go along to get along. As a former coworker advised me, there is a time to "put on the rain slicker and let the shit fly.
It was a holiday weekend, so I had to wait a few days to call my doctor. I was in continual pain and discouraged about my options. I looked forward to calling the doctor early on Tuesday morning.
On that day I woke up for the first time since I got the IUD without pain. Suddenly, it was gone.
Later, I called my mother to let her know I felt better.
It amazes me that pain can overshadow my existence for days or weeks. Then, when it lifts, I fail to appreciate adequately the miraculous state of non-pain for more than a day.
This year, I had a pulmonary embolism and thereafter entered the uncomfortable world of medical compromises. A medication I used to address hemorrhaging from a fibroid tumor was a contributing factor to the embolism, so I am no longer able to use that medication. Nor am I able to take the medication used to control the pain associated with the condition.
As a result, these serious fibroid-related side effects went untreated and became distressing. I found myself with few options to address the problem and agreed to a surgery that I had refused several years ago.
Relatives in the medical field urged me to see one of my uncle's colleagues for a second opinion. I canceled the surgery (which took several months to schedule) and traveled to Baltimore. The new surgeon considered the procedure far too risky for someone on blood thinners and recommended a progesterone IUD instead.
An IUD is one of the last things I ever imagined acquiring. In my mind they were tied to major gynecological problems. I already have major gynecological problems. Why would I invite Pandora's Box to reside in my womb?
The lack of options to address my problem led me to accept a solution that looks like another problem.
The insertion did not go well. Among other unpleasantries, it involved a shot in the hoo-ha. From that moment on, my body shook throughout the procedure. As I laid supine on the exam table, I imagined running from the room on my buttocks like a cartoon character I saw in Tex Avery's Rock-A-Bye-Bear.
I expected to have cramps during and shortly after the insertion, but I didn't expect them to last for several days. The pain was distracting, and I probably focused on it more than I usually would because I distrust the device that had been inserted into my body. There was very little in the drug literature about persistent cramping, except with regard to lower abdominal pain as an indication of a PID (which is a recognized side effect).
My mother happened to call a couple of days after the procedure, and I ended up confessing to her my distress. Generally, I avoid telling her about any problems because she is incapable of offering sound advice. Her remarks, which tend to reflect poor judgment and her removal from mainstream intelligence (this is someone who doesn't use an ATM, cell phone, or computer), usually are not helpful and tend to result in more frustration. That I told her about the pain, my concerns about the device, and my overall sadness about my life-long struggle with gynecological problems indicates my desperation.
I'm not sure why, but after hanging up with her the idea crossed my mind that I had acted like the conformist derided in the popular American cinematic and literary narrative. Instead of being a Norma Rae or Karen Silkwood who fights for my medical options, I succumbed to a procedure I really didn't want. In fact, I paid a $95 co-pay for it.
As I pondered this idea, I began to realize that the notion of people becoming medical consumers who have control over their care and health costs is deeply flawed. In what realistic scenario am I going to know which tests are necessary, how much they should cost, and which labs charge reasonable fees? In light of my long-term medical odyssey in which I have researched my ailments and current treatments, it is remarkable that I hadn't recognized this before.
It is virtually impossible for anyone other than a medical professional to know the panoply of medical options available to patients, especially when the need for treatment is pressing. Insurance companies tend to not cover experimental treatments, so options are limited by their designations of appropriate treatment. Now my medical options are further narrowed by another medical condition and the medication used to treat it. In fact, the extreme complications raised by these factors led me to surrender to the advice of the best doctor I could find.
It isn't reasonable to expect every person to acquire the expertise of a doctor to address their health needs. I go to a doctor because I am not a doctor.
This line of thinking made me reconsider the American narrative of the rugged individualist fighting the system. In many cases, the likely outcome is that the nerd would be better off avoiding conflict rather than risk getting crushed by those who are stronger, the Norma Rae is a crackpot fighting a lost cause based on faulty arguments, and the home schooling mother is an unqualified educator doing her children a disservice. Perhaps by focusing on the triumph of a maverick the expectations for ethics, collective expertise (such as those that inform medical and insurance decisions), and educational standards have been allowed to plummet.
Being the leader who fights the system is admirable in some situations. But it really shouldn't be the expected default when the system is deeply flawed, especially in a world where companies drop your service or charge a fee when you complain to customer service.
It's a sad fact that sometimes it makes more sense to go along to get along. As a former coworker advised me, there is a time to "put on the rain slicker and let the shit fly.
It was a holiday weekend, so I had to wait a few days to call my doctor. I was in continual pain and discouraged about my options. I looked forward to calling the doctor early on Tuesday morning.
On that day I woke up for the first time since I got the IUD without pain. Suddenly, it was gone.
Later, I called my mother to let her know I felt better.
It amazes me that pain can overshadow my existence for days or weeks. Then, when it lifts, I fail to appreciate adequately the miraculous state of non-pain for more than a day.
Wednesday, October 14, 2009
The Possibilities
As I passed P.S. 11 today I looked at kids playing games on the playground and pondered all of the potential they represented. There are so many different possible outcomes for the many choices they will make in years to come. They face more choices now than they will face decades from now. It seems as if they are close to a peak of potential.
Then I thought about how potential gets whittled away as people age. One can try to influence certain outcomes, and sometimes reach a goal and sometimes not get what one strives to attain. Eventually, certain milestones are met and the possibility for reaching additional milestones narrows.
Possibility is intangible, yet exciting in a way that other intangibles are not. I would like to think that potential continues to emerge as people grow. Perhaps I have failed to recognize it.
I'm having surgery within the month to address a gynecological problem that can no longer be addressed with medication. It is complicated to have surgery now that I take blood thinners. There is a risk that I will lose too much blood.
After assessing the situation, my surgeon presented two scenarios. I can take the risk of going off of the blood thinners and have the standard surgery or I can have an alternative surgery while on blood thinners that is likely to decrease my fertility.
Although it is unlikely that I will have a child, I just couldn't intentionally further reduce the possibility of having one. I've decided to have the standard surgery with the bleeding risk.
Ironically, this situation leads me to recall a remark by a college professor that some environmentalists have virgin complexes. Sometimes I wonder whether my preservation of potential is similar. Do I stymie progress by attempting to maximize options?
Then I thought about how potential gets whittled away as people age. One can try to influence certain outcomes, and sometimes reach a goal and sometimes not get what one strives to attain. Eventually, certain milestones are met and the possibility for reaching additional milestones narrows.
Possibility is intangible, yet exciting in a way that other intangibles are not. I would like to think that potential continues to emerge as people grow. Perhaps I have failed to recognize it.
I'm having surgery within the month to address a gynecological problem that can no longer be addressed with medication. It is complicated to have surgery now that I take blood thinners. There is a risk that I will lose too much blood.
After assessing the situation, my surgeon presented two scenarios. I can take the risk of going off of the blood thinners and have the standard surgery or I can have an alternative surgery while on blood thinners that is likely to decrease my fertility.
Although it is unlikely that I will have a child, I just couldn't intentionally further reduce the possibility of having one. I've decided to have the standard surgery with the bleeding risk.
Ironically, this situation leads me to recall a remark by a college professor that some environmentalists have virgin complexes. Sometimes I wonder whether my preservation of potential is similar. Do I stymie progress by attempting to maximize options?
Thursday, July 23, 2009
Surrender
Unbeknownst to me, I walked around with large blood clots in my leg for two weeks in May. On the evening before my last post, a massive blood clot moved through my heart and exploded in my lungs. It happened in my sleep.
As the tissue in my lungs began to die, I felt pain that I dismissed as an onset of long-dormant asthma. The pain continued and my insurance provider's nurse hotline advised me to go to the emergency room, but I went to an all-night clinic where my co-pay was much lower. I was again advised to go to the emergency room but hesitated due to the $300 co-pay. The pain worsened, and I finally went to the emergency room. I was diagnosed with pulmonary embolisms and spent the next 4 days in the hospital. Upon discharge, I went directly to Maryland to recuperate with my family.
The moment I was diagnosed and informed that I would be hospitalized is probably the moment that I began to surrender. The doctors took control of my body. Then I succumbed to the wishes of my family.
I had to recuperate at the homes of my relatives because I couldn't walk the 4 flights of stairs to my apartment. I wore clothes that were packed for me by someone else. I ate whatever groceries were on hand. My job search was put on hold, and then into low gear.
Now that I am back in New York, I have more choice about what I do day to day. But I realize I am still in a state of surrender.
It is easy to get angry and sad about all that life has thrown at me this year. In an attempt to avoid self-pity, I try to find lessons to learn from the experience.
I suppose the biggest shift I have experienced is in my perspective. The issues that were nagging me when I got sick seem petty now. Unemployment is a major issue, but it isn't immediately life-threatening. The bills will be paid somehow. I will carry on.
I also realize that any sense of control that I thought I had over my life was an illusion. A year ago I had a job, a great apartment, my health, and a budding relationship with a man I really liked. The reality was there were people at a much higher level than me at my company making decisions about the future of the business, and they didn't value my work at all. The apartment belonged to the landlord and he moved to evict me and my room mate because he wanted to charge far more rent. My doctor performed a physical and declared me healthy based tests taken at that time. The man seemed to like me, but I suppose he really didn't or his feeling changed.
I have some influence over what happens to me. I suppose I am lolled into thinking that doing a good job will keep me employed or paying my rent on time will keep me in an apartment. The reality is: the causal relationship I envision isn't always there. The whole world is random and capricious. People and businesses don't disclose their motives. Bodies change. It is my task to deal with it.
I try not to worry. It diverts too much energy from healing. I'm in good shape, but I have not completely healed.
Worrying also diminishes any good that happens. If there is only a glimmer of good happening each day, I don't want it overshadowed by concerns that may not really manifest themselves as problems.
I walk less and I buy less. I endeavor to enjoy my time here a little more by not beating myself up about expenses I can't reasonably avoid. I try to focus on the fact that my situation was improved by the income I earned from freelancing in April and May.
I still have to forge ahead with my job search, but I will also give myself a little bit of a break and breathe.
It is a little creepy to read my last post. The text now seems to have anticipated what followed. Any day could be my last, so I better enjoy at least a part of each day.
As the tissue in my lungs began to die, I felt pain that I dismissed as an onset of long-dormant asthma. The pain continued and my insurance provider's nurse hotline advised me to go to the emergency room, but I went to an all-night clinic where my co-pay was much lower. I was again advised to go to the emergency room but hesitated due to the $300 co-pay. The pain worsened, and I finally went to the emergency room. I was diagnosed with pulmonary embolisms and spent the next 4 days in the hospital. Upon discharge, I went directly to Maryland to recuperate with my family.
The moment I was diagnosed and informed that I would be hospitalized is probably the moment that I began to surrender. The doctors took control of my body. Then I succumbed to the wishes of my family.
I had to recuperate at the homes of my relatives because I couldn't walk the 4 flights of stairs to my apartment. I wore clothes that were packed for me by someone else. I ate whatever groceries were on hand. My job search was put on hold, and then into low gear.
Now that I am back in New York, I have more choice about what I do day to day. But I realize I am still in a state of surrender.
It is easy to get angry and sad about all that life has thrown at me this year. In an attempt to avoid self-pity, I try to find lessons to learn from the experience.
I suppose the biggest shift I have experienced is in my perspective. The issues that were nagging me when I got sick seem petty now. Unemployment is a major issue, but it isn't immediately life-threatening. The bills will be paid somehow. I will carry on.
I also realize that any sense of control that I thought I had over my life was an illusion. A year ago I had a job, a great apartment, my health, and a budding relationship with a man I really liked. The reality was there were people at a much higher level than me at my company making decisions about the future of the business, and they didn't value my work at all. The apartment belonged to the landlord and he moved to evict me and my room mate because he wanted to charge far more rent. My doctor performed a physical and declared me healthy based tests taken at that time. The man seemed to like me, but I suppose he really didn't or his feeling changed.
I have some influence over what happens to me. I suppose I am lolled into thinking that doing a good job will keep me employed or paying my rent on time will keep me in an apartment. The reality is: the causal relationship I envision isn't always there. The whole world is random and capricious. People and businesses don't disclose their motives. Bodies change. It is my task to deal with it.
I try not to worry. It diverts too much energy from healing. I'm in good shape, but I have not completely healed.
Worrying also diminishes any good that happens. If there is only a glimmer of good happening each day, I don't want it overshadowed by concerns that may not really manifest themselves as problems.
I walk less and I buy less. I endeavor to enjoy my time here a little more by not beating myself up about expenses I can't reasonably avoid. I try to focus on the fact that my situation was improved by the income I earned from freelancing in April and May.
I still have to forge ahead with my job search, but I will also give myself a little bit of a break and breathe.
It is a little creepy to read my last post. The text now seems to have anticipated what followed. Any day could be my last, so I better enjoy at least a part of each day.
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