is incredibly frustrating. Though I understand in most circumstances why it is so difficult for doctors to communicate with each other, what I do not understand is when they do not even make the effort.
I was supposed to have surgery at the end of June, but two days before the procedure it was called off to “try” Methotrexate and see if it solved my back pain. Never mind the fact that my back pain is nothing like my joint pain and I showed no signs of anklosing spondylitis. So it was called off against my gut feeling that it was a bad idea (it was) and despite my protests. My doctors did not take me seriously enough and waited until two days before the procedure to call each other up and discuss my case. Seriously? You could have told me weeks before while I was waiting to start MTX and going untreated for my RA because of the upcoming surgery. Instead of wasting five months, you could have told me I needed to try MTX back in April. And it all comes down to communication. Despite my efforts to get them to communicate, neither of them did until it was last minute and they’d put me through months of waiting while going untreated.
Needless to say, the MTX did nothing for my spine and was way too harsh on my head for me to continue the medication. Then, I was scheduled for the end of July, but had not been off the MTX long enough for surgery. Surgery canceled. So I was scheduled to have surgery this Friday, August 12th. Keep in mind that for every scheduling, I have to go through pre-op testing (pulmonary function tests, blood, etc), donate 2 pints of blood (makes me horribly sick for a day), get a timely appointment and surgical clearance from my GP, and drive an hour to have a surgical orientation at the hospital.
It’s a huge ordeal, not to mention what it takes to mentally prepare yourself for two procedures like the ones I am having. I had pre-op labs done last week, but my blood was “thick” and I was told I needed to repeat blood work. So I did two days ago and was told the over-clotting was just a fluke. Wrong. My blood is ‘over-clotting’ and too many platelets puts me at high risk for surgical complications and blood clots (uh, can you say dangerous?).
So, of course, surgery is canceled. Again. For the third time. I have to see a specialist on the 17th.
I’ll probably have blood tests which will take a week to come back, a few days for the doctor to read the report, then another two weeks for me to get an appointment. Depending on the results I will either be cleared for surgery and will have it mid- September, or I have a blood disorder and treatment for that has to happen before surgery can be considered, meaning my life is on hold and the chances of going back to school this spring will get slimmer and slimmer…
After we figure out what is wrong with my blood, I go through surgical prep for a fourth time and wait another month doing so. In the mean time, I am off my RA meds and flaring horribly and my back still hurts. My temperature hasn’t dropped below 100F in a week.
To say I am frustrated is an understatement. Though it is no one’s fault that my immune system is a huge bitch, I would not be in this predicament if my physicians had listened to me and communicated with each other like I asked them to and they told me they would months ago. I appreciate and respect both my rheumatologist and spine surgeon. They are brilliant physicians who both took the time to look at the big picture to solve my mystery diagnosis, but I find communication to be a huge problem with all of my doctors. A problem that, assuming I become a physician myself, I hope not to have.
I was supposed to have surgery at the end of June, but two days before the procedure it was called off to “try” Methotrexate and see if it solved my back pain. Never mind the fact that my back pain is nothing like my joint pain and I showed no signs of anklosing spondylitis. So it was called off against my gut feeling that it was a bad idea (it was) and despite my protests. My doctors did not take me seriously enough and waited until two days before the procedure to call each other up and discuss my case. Seriously? You could have told me weeks before while I was waiting to start MTX and going untreated for my RA because of the upcoming surgery. Instead of wasting five months, you could have told me I needed to try MTX back in April. And it all comes down to communication. Despite my efforts to get them to communicate, neither of them did until it was last minute and they’d put me through months of waiting while going untreated.
Needless to say, the MTX did nothing for my spine and was way too harsh on my head for me to continue the medication. Then, I was scheduled for the end of July, but had not been off the MTX long enough for surgery. Surgery canceled. So I was scheduled to have surgery this Friday, August 12th. Keep in mind that for every scheduling, I have to go through pre-op testing (pulmonary function tests, blood, etc), donate 2 pints of blood (makes me horribly sick for a day), get a timely appointment and surgical clearance from my GP, and drive an hour to have a surgical orientation at the hospital.
It’s a huge ordeal, not to mention what it takes to mentally prepare yourself for two procedures like the ones I am having. I had pre-op labs done last week, but my blood was “thick” and I was told I needed to repeat blood work. So I did two days ago and was told the over-clotting was just a fluke. Wrong. My blood is ‘over-clotting’ and too many platelets puts me at high risk for surgical complications and blood clots (uh, can you say dangerous?).
So, of course, surgery is canceled. Again. For the third time. I have to see a specialist on the 17th.
I’ll probably have blood tests which will take a week to come back, a few days for the doctor to read the report, then another two weeks for me to get an appointment. Depending on the results I will either be cleared for surgery and will have it mid- September, or I have a blood disorder and treatment for that has to happen before surgery can be considered, meaning my life is on hold and the chances of going back to school this spring will get slimmer and slimmer…
After we figure out what is wrong with my blood, I go through surgical prep for a fourth time and wait another month doing so. In the mean time, I am off my RA meds and flaring horribly and my back still hurts. My temperature hasn’t dropped below 100F in a week.
To say I am frustrated is an understatement. Though it is no one’s fault that my immune system is a huge bitch, I would not be in this predicament if my physicians had listened to me and communicated with each other like I asked them to and they told me they would months ago. I appreciate and respect both my rheumatologist and spine surgeon. They are brilliant physicians who both took the time to look at the big picture to solve my mystery diagnosis, but I find communication to be a huge problem with all of my doctors. A problem that, assuming I become a physician myself, I hope not to have.
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