!!MOD NOTE: Progress report
Another update from Laurie and Deb:
Happy Staples Removal Day!
On Sunday, Deb walked in the street, since the sidewalks have become snow tunnels that are too narrow for the two of us to walk side-by-side, and made it all the way to the corner. On Monday, after Deb's doctor's visit, she went grocery shopping with me. Now it's snowing again, a snowstorm that has the weather forecasters behaving like excited corgis, and we could have another 20 inches of snow by Wednesday evening.
At Deb's doctor's visit yesterday, we met once again with Dr. P, Deb's talented surgeon, who seemed genuinely glad that she is doing so well. I was still pushing her around in a wheelchair, because, although she certainly can walk, she finds hospital visits exhausting. Dr. P said that the next time he sees her, he expects that we'll have dispensed with the wheelchair. While he and Deb discussed her problems with pain and with medication side-effects, he removed her staples, which Deb didn't seem to feel at all (perhaps because they seem to be more like teeny little clamps than they are like staples--no pointy tips). He and Pauline, the post-transplant coordinator, mulled over Deb's list of medications, trying to figure out what could be eliminated. Some of her medications are for her porphyria, and as she hasn't had any of her old symptoms, she's going to start reducing and then eliminating them--the gabapentin, for example, which controlled her tremors but also makes her lethargic. Her labwork shows that the stuff the liver is supposed to filter out (ammonia, for example, which caused both of Deb's near-comas last year) is being filtered, and the stuff the liver is supposed to put somewhere else (bilirubin, for example, which makes liver patients jaundiced) is being put where it's supposed to be. So, although they still want her to get labwork next week, she doesn't have to see the transplant people until the week after next.
In the meantime, though, she'll be starting up with Lahey's Pain Clinic, which will manage her withdrawal from narcotics, including the morphine that she's been taking since 1995, approximately. With that referral, Dr. P seemed more comfortable about renewing her oxycontin prescription, and she'll continue to only take it at night. Also, she's going to visit her beloved primary care doctor, Dr. G, and begin the process of getting tested for porphyrins (the neuro-toxin that builds up in the blood in people who have Acute Intermittent Porphyria), which will objectively confirm whether or not she has active porphyria. Once we have confirmation, her remaining porta-cath will be removed, and the process of eliminating medications will probably be accelerated.
While we slough off the now-unnecessary medicalia, it also feels like we're sloughing off the accretion of burdens, one layer at a time. We don't know at which level of function Deb might stabilize, but it doesn't matter, since every change is an improvement. During the first year of Deb's illness, I became accustomed to, and then oblivious to, the weight of worry I've been carrying around, but oh my goodness, how light I feel--like the Light Princess in George MacDonald's story, who had to be weighed down to keep her from floating away. And yet I'm poised for the next crisis. My therapist calls it shell-shock, like the soldiers in the trenches during WWI, when they came home from war, continued to fear that at any moment another shell would plow into them.
Deb asked me to note that her father entered hospice care in Florida a couple of days ago, and isn't expected to live much longer. She's very sad, so if you call her she may not be feeling very chatty.
Happy Staples Removal Day!
On Sunday, Deb walked in the street, since the sidewalks have become snow tunnels that are too narrow for the two of us to walk side-by-side, and made it all the way to the corner. On Monday, after Deb's doctor's visit, she went grocery shopping with me. Now it's snowing again, a snowstorm that has the weather forecasters behaving like excited corgis, and we could have another 20 inches of snow by Wednesday evening.
At Deb's doctor's visit yesterday, we met once again with Dr. P, Deb's talented surgeon, who seemed genuinely glad that she is doing so well. I was still pushing her around in a wheelchair, because, although she certainly can walk, she finds hospital visits exhausting. Dr. P said that the next time he sees her, he expects that we'll have dispensed with the wheelchair. While he and Deb discussed her problems with pain and with medication side-effects, he removed her staples, which Deb didn't seem to feel at all (perhaps because they seem to be more like teeny little clamps than they are like staples--no pointy tips). He and Pauline, the post-transplant coordinator, mulled over Deb's list of medications, trying to figure out what could be eliminated. Some of her medications are for her porphyria, and as she hasn't had any of her old symptoms, she's going to start reducing and then eliminating them--the gabapentin, for example, which controlled her tremors but also makes her lethargic. Her labwork shows that the stuff the liver is supposed to filter out (ammonia, for example, which caused both of Deb's near-comas last year) is being filtered, and the stuff the liver is supposed to put somewhere else (bilirubin, for example, which makes liver patients jaundiced) is being put where it's supposed to be. So, although they still want her to get labwork next week, she doesn't have to see the transplant people until the week after next.
In the meantime, though, she'll be starting up with Lahey's Pain Clinic, which will manage her withdrawal from narcotics, including the morphine that she's been taking since 1995, approximately. With that referral, Dr. P seemed more comfortable about renewing her oxycontin prescription, and she'll continue to only take it at night. Also, she's going to visit her beloved primary care doctor, Dr. G, and begin the process of getting tested for porphyrins (the neuro-toxin that builds up in the blood in people who have Acute Intermittent Porphyria), which will objectively confirm whether or not she has active porphyria. Once we have confirmation, her remaining porta-cath will be removed, and the process of eliminating medications will probably be accelerated.
While we slough off the now-unnecessary medicalia, it also feels like we're sloughing off the accretion of burdens, one layer at a time. We don't know at which level of function Deb might stabilize, but it doesn't matter, since every change is an improvement. During the first year of Deb's illness, I became accustomed to, and then oblivious to, the weight of worry I've been carrying around, but oh my goodness, how light I feel--like the Light Princess in George MacDonald's story, who had to be weighed down to keep her from floating away. And yet I'm poised for the next crisis. My therapist calls it shell-shock, like the soldiers in the trenches during WWI, when they came home from war, continued to fear that at any moment another shell would plow into them.
Deb asked me to note that her father entered hospice care in Florida a couple of days ago, and isn't expected to live much longer. She's very sad, so if you call her she may not be feeling very chatty.