I'm ten days shy of having been on Jynarque/Tolvaptan for 12 weeks.
Three months.
A quarter of a year.
So far so good as far as the side effects go. Yes. I drink a TON of water. Yes. I go to the bathroom A LOT. [A piece of advice. When you pee as much as us Tolvaptaneers do, you learn to dab instead of wipe. Just sayin'...]. No. My liver function has not deteriorated. My eGFR is solidly in Stage 4 at 28 but my bloodwork is stellar (no protein leakage for this girl).
Some people say that their flank pain decreases when on Tolvaptan. I can't go along with that.
Instead...
I experience low grade flank pain (along the waist, under my ribs on my front side) most of the time. It's not enough to actually classify it as pain; it's an almost constant feeling of discomfort.
I get winded and out of breath more easily. At work we do walking statuses and i have one speed... GO! I've found that it's hard to walk and talk. And I've found that I have to reduce my speed. When I walk my dogs with one of my friends, it's the same thing. I'm huffing and puffing to get the words out.
As of late, I've also been getting frequent heartburn. I've tried eating smaller meals. Avoiding fat and dairy. Avoiding spicy foods. And tomato-based foods. Sleeping with my head propped up. Nothing seems to help.
And the fatigue? Dang. It's real. The past two nights I've slept at least 10 hours. Today I was able to function and I'm feeling fairly proud that it's almost 830pm and I'm still awake and functioning.
And finally, I've noticed that it's uncomfortable to sit down. Waistbands seem to apply too much pressure (and it's not because my pants are too tight). At times - with only my dogs around - I've actually unbuttoned and unzipped my pants a bit to get comfortable. Has PKD Belly finally arrived for me? I think it may have.
Bottom line is that I think my kidneys are growing. It's also possible that more cysts are finding their way to my liver. I had an ultrasound a year ago and they found cysts but they didn't diagnose me with Polycystic Liver Disease. My uncle had it (along with PKD) and he ended up getting a double transplant - kidney and liver. My fear is that that is in my cards as well.
But the truly sad thing is that I'm almost afraid to tell my doctor during my appointment tomorrow. The first thing out of her mouth - I fear - will be that I need to lose weight. Do I? Yes. I could stand to lose anywhere between 20-30 pounds. But I'm also in treatment for Binge Eating Disorder. And what's the first step of treatment? To stop the dieting/restriction mentality.
The funny thing - funny because they think it will make a difference - is that both my therapist and nutritionist have volunteered to write my doctor letters/send her articles that would counter her advice to lose weight. To this I just sigh and roll my eyes. It doesn't matter. I will have to try to figure out how to lose weight, keep it off and avoid retriggering myself. No short order.
But I'm hopeful. I'm hopeful that while my nephrologist may touch on the need to lose weight, she will focus on the increased symptoms. And we will talk about them. And we will strategize. And I hope that she will see me as someone who, while imperfect, is actively trying to cope with and manage this disease in the best way she knows how.
Jynarque. Work your magic. I'm ready.
Three months.
A quarter of a year.
So far so good as far as the side effects go. Yes. I drink a TON of water. Yes. I go to the bathroom A LOT. [A piece of advice. When you pee as much as us Tolvaptaneers do, you learn to dab instead of wipe. Just sayin'...]. No. My liver function has not deteriorated. My eGFR is solidly in Stage 4 at 28 but my bloodwork is stellar (no protein leakage for this girl).
Some people say that their flank pain decreases when on Tolvaptan. I can't go along with that.
Instead...
I experience low grade flank pain (along the waist, under my ribs on my front side) most of the time. It's not enough to actually classify it as pain; it's an almost constant feeling of discomfort.
I get winded and out of breath more easily. At work we do walking statuses and i have one speed... GO! I've found that it's hard to walk and talk. And I've found that I have to reduce my speed. When I walk my dogs with one of my friends, it's the same thing. I'm huffing and puffing to get the words out.As of late, I've also been getting frequent heartburn. I've tried eating smaller meals. Avoiding fat and dairy. Avoiding spicy foods. And tomato-based foods. Sleeping with my head propped up. Nothing seems to help.
And the fatigue? Dang. It's real. The past two nights I've slept at least 10 hours. Today I was able to function and I'm feeling fairly proud that it's almost 830pm and I'm still awake and functioning.
And finally, I've noticed that it's uncomfortable to sit down. Waistbands seem to apply too much pressure (and it's not because my pants are too tight). At times - with only my dogs around - I've actually unbuttoned and unzipped my pants a bit to get comfortable. Has PKD Belly finally arrived for me? I think it may have.
Bottom line is that I think my kidneys are growing. It's also possible that more cysts are finding their way to my liver. I had an ultrasound a year ago and they found cysts but they didn't diagnose me with Polycystic Liver Disease. My uncle had it (along with PKD) and he ended up getting a double transplant - kidney and liver. My fear is that that is in my cards as well.
But the truly sad thing is that I'm almost afraid to tell my doctor during my appointment tomorrow. The first thing out of her mouth - I fear - will be that I need to lose weight. Do I? Yes. I could stand to lose anywhere between 20-30 pounds. But I'm also in treatment for Binge Eating Disorder. And what's the first step of treatment? To stop the dieting/restriction mentality.
The funny thing - funny because they think it will make a difference - is that both my therapist and nutritionist have volunteered to write my doctor letters/send her articles that would counter her advice to lose weight. To this I just sigh and roll my eyes. It doesn't matter. I will have to try to figure out how to lose weight, keep it off and avoid retriggering myself. No short order.
But I'm hopeful. I'm hopeful that while my nephrologist may touch on the need to lose weight, she will focus on the increased symptoms. And we will talk about them. And we will strategize. And I hope that she will see me as someone who, while imperfect, is actively trying to cope with and manage this disease in the best way she knows how.
Jynarque. Work your magic. I'm ready.
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