Anniversaries
May 3rd marked an entire year since I lay in the MRI machine for the second time in the same day, wondering why they'd called me back so late at night and knowing it must be bad. They saw the clots and admitted to the hostpial where I worked then as an intern. I find it odd to remember the change a year can bring. This year, on the anniversary of my strokes I was at the medicine department housestaff meeting, crocheting a hat and waiting for next year's schedule. The day before I'd started my rheumatology consult time and loved it. And this year, at the same time when I was having the MRV which showed the clots in my brain and finally a reason for my intractable headaches and numbness and vision changes, I was enjoying thai food at the ocean with new friends who just found out about her their pregnancy. What a difference a year can make.
It Rheumatology is generally known as the joint specialty but it also includes autoimmune diseases such as lupus and antiphospholipid syndrome. I didn't tell the fellow or attending that I have both, plus a prothrombin mutation. Not yet. Maybe not at all.
We have only one patient we spoke of on the consult service right now. A 52 year old man with repeated strokes and what looks like vasculitis on his angiogram (though he has a negative brain biopsy); he doesn't appear to have lupus, but he does have antiphosphlipid syndrome. We don't even go to the other hospital to see him together because his strokes have rendered over half of his body immobile. "He just lays there," says the fellow.
As she and I waited for the attending, I asked her if she ever has rheumatologic emergencies. She tells me about a disease I haven't heard of: Catastrophic antiphospholipid syndrome, CAP for short.
"Basically you start forming clots everywhere. This patient was in 26. She went into multisystem organ failure."
"Did she carry the diagnosis of anitphospholipid syndrome before?"
"No but she had had seven spontaneous abortions. She presented just not feeling well, with thrombocytopenia. She had bad pulmolnary hypertension."
Likely from all the clots in her lungs, I add in my head. "What sets that off?" I ask, glad now I have not told her that I have antiphospholipid syndrome.
"We're not sure. Could be infection. Anything can be infection." She's from Texas adn she says it with a bit of a drawl: "Cood bay infek-shun." Could be. She goes on, "We ended up recommending plasmaphorisis to try to get the antibodies out of her body but it doesn't really seem to be them that are pathogenic. It's the clotting that is the problem." I know very well that the clotting is the problem. Too well. "We gave her six rounds of plasmaphoreis, but she died."
"Oh." I didn't see that coming. Well crap. Time for me to change the subject. Thanksfully the phone rings and she answers it. I go back to the other computer and look up the stroke patient's cholesterol level--maybe it's just normal old atherosclerosis for him. Nope. His cholesterol isn't bad.
I remember that I had labs done recently again, too. All of the same labs we'd just recommended to check in him, actually. DRVVT, anticardiolipin, beta gamma globulin. And my rheumatologist has just repeated my double stranded DNA the week before. It's still positive. It's always positive. But this time it's 108 instead of 125. This time last year, it was too high for the assay to measure: >300 is all is says for the May 4, 2007 lab data.
A whole year. What a year it has been.
There is a list somewhere that I remember learning about which ranks events in your life according to how stressful they are. I thought of it this morning on the way to rheumatology grand rounds. It includes: death of a spouse, loss of a child, moving (check), changing jobs (every month I do something different), death of a loved one (Pop), dissolution of an intimate relationship (mine and my parents'), major illness (three, four, five? they all blur together), etc.
Managing stress became one of my biggest challenges over the past year. At the root of everything that went "wrong" (if we must qualify events as right or wrong) simply was my ability to respond to them. My body told me that I could no longer handle the level of stress at which I'd previously functioned. The external pressures would be the same, probably worse, but the internal response had to change--or else. And the "or else" actually had a antecendent now: or else I would get so tired I couldn't do anything. Or else I would not be able to walk because my knees would hurt so badly. Or else surfing, biking, running, playing would be completely out of the question. Or else the clots could again grow in my brain and block off the already too small passages draining blood to my brain. Ultimately, or else I could die, I suppose.
It's hard to imagine that last one now that I'm feeling so well lately. I've made it through my first team-leading month which went well--room for improvement; and it will be better next time. And I love where I live. The area and the people. I'm excited again to learn at times. I'm taking pictures and expanding again. I'm back to running and biking and swimming some.
Last year it was all I could do to maintain my sanity in my eleventh floor hospital room with Steve there worrying over me and the parade of consults coming in and out. Neurology telling me I had clots in my head and my RF was positive. Hematology telling them to keep me until I was theraputic on the coumadin. And Rheumatology telling me that they weren't yet sure, but I might have lupus. Still unable to read or write or work, scared and staring out the window, trying not to think too much.
What a difference a year can make.
With all of the struggles that this last year has brought, until March 24th I was comforted that no one close to me had died. And then Pop did. That kept me awake last night. I miss him. I was on call again last night for Children's--the kind of call where I stay home unless they need me which is somewhat anxiety-producing as I toss and turn and check my pager to make sure I haven't missed any pages after changing the battery to make sure it makes louder beeps.
I'd miss him when I woke up. I remember growing up when he slept just down the hall. I'd peak my head in to say goodnight. "Good night, Pop. Love you." "Oh, good night, Hon. Love you too. See you in the morning." It's still sometimes hard to believe that those mornings have passed. I think I dreamt about him somewhere in my fits of sleep.
Time marches on. Changes waits for no woman. No man. And really, thank goodness it doesn't. Who want to wait to live and change? Just that some years are harder than others. And what a year it has been.
It Rheumatology is generally known as the joint specialty but it also includes autoimmune diseases such as lupus and antiphospholipid syndrome. I didn't tell the fellow or attending that I have both, plus a prothrombin mutation. Not yet. Maybe not at all.
We have only one patient we spoke of on the consult service right now. A 52 year old man with repeated strokes and what looks like vasculitis on his angiogram (though he has a negative brain biopsy); he doesn't appear to have lupus, but he does have antiphosphlipid syndrome. We don't even go to the other hospital to see him together because his strokes have rendered over half of his body immobile. "He just lays there," says the fellow.
As she and I waited for the attending, I asked her if she ever has rheumatologic emergencies. She tells me about a disease I haven't heard of: Catastrophic antiphospholipid syndrome, CAP for short.
"Basically you start forming clots everywhere. This patient was in 26. She went into multisystem organ failure."
"Did she carry the diagnosis of anitphospholipid syndrome before?"
"No but she had had seven spontaneous abortions. She presented just not feeling well, with thrombocytopenia. She had bad pulmolnary hypertension."
Likely from all the clots in her lungs, I add in my head. "What sets that off?" I ask, glad now I have not told her that I have antiphospholipid syndrome.
"We're not sure. Could be infection. Anything can be infection." She's from Texas adn she says it with a bit of a drawl: "Cood bay infek-shun." Could be. She goes on, "We ended up recommending plasmaphorisis to try to get the antibodies out of her body but it doesn't really seem to be them that are pathogenic. It's the clotting that is the problem." I know very well that the clotting is the problem. Too well. "We gave her six rounds of plasmaphoreis, but she died."
"Oh." I didn't see that coming. Well crap. Time for me to change the subject. Thanksfully the phone rings and she answers it. I go back to the other computer and look up the stroke patient's cholesterol level--maybe it's just normal old atherosclerosis for him. Nope. His cholesterol isn't bad.
I remember that I had labs done recently again, too. All of the same labs we'd just recommended to check in him, actually. DRVVT, anticardiolipin, beta gamma globulin. And my rheumatologist has just repeated my double stranded DNA the week before. It's still positive. It's always positive. But this time it's 108 instead of 125. This time last year, it was too high for the assay to measure: >300 is all is says for the May 4, 2007 lab data.
A whole year. What a year it has been.
There is a list somewhere that I remember learning about which ranks events in your life according to how stressful they are. I thought of it this morning on the way to rheumatology grand rounds. It includes: death of a spouse, loss of a child, moving (check), changing jobs (every month I do something different), death of a loved one (Pop), dissolution of an intimate relationship (mine and my parents'), major illness (three, four, five? they all blur together), etc.
Managing stress became one of my biggest challenges over the past year. At the root of everything that went "wrong" (if we must qualify events as right or wrong) simply was my ability to respond to them. My body told me that I could no longer handle the level of stress at which I'd previously functioned. The external pressures would be the same, probably worse, but the internal response had to change--or else. And the "or else" actually had a antecendent now: or else I would get so tired I couldn't do anything. Or else I would not be able to walk because my knees would hurt so badly. Or else surfing, biking, running, playing would be completely out of the question. Or else the clots could again grow in my brain and block off the already too small passages draining blood to my brain. Ultimately, or else I could die, I suppose.
It's hard to imagine that last one now that I'm feeling so well lately. I've made it through my first team-leading month which went well--room for improvement; and it will be better next time. And I love where I live. The area and the people. I'm excited again to learn at times. I'm taking pictures and expanding again. I'm back to running and biking and swimming some.
Last year it was all I could do to maintain my sanity in my eleventh floor hospital room with Steve there worrying over me and the parade of consults coming in and out. Neurology telling me I had clots in my head and my RF was positive. Hematology telling them to keep me until I was theraputic on the coumadin. And Rheumatology telling me that they weren't yet sure, but I might have lupus. Still unable to read or write or work, scared and staring out the window, trying not to think too much.
What a difference a year can make.
With all of the struggles that this last year has brought, until March 24th I was comforted that no one close to me had died. And then Pop did. That kept me awake last night. I miss him. I was on call again last night for Children's--the kind of call where I stay home unless they need me which is somewhat anxiety-producing as I toss and turn and check my pager to make sure I haven't missed any pages after changing the battery to make sure it makes louder beeps.
I'd miss him when I woke up. I remember growing up when he slept just down the hall. I'd peak my head in to say goodnight. "Good night, Pop. Love you." "Oh, good night, Hon. Love you too. See you in the morning." It's still sometimes hard to believe that those mornings have passed. I think I dreamt about him somewhere in my fits of sleep.
Time marches on. Changes waits for no woman. No man. And really, thank goodness it doesn't. Who want to wait to live and change? Just that some years are harder than others. And what a year it has been.
posted by S. at 11:35 AM
0 Comments:
Post a Comment
<< Home