Donor Update, Etc.
Hello there!
The last few weeks have been somewhat uneventful at Chez Penny, but I do have some updates to share.
First, this is pretty much the best way to depict my state of mind since being placed on the transplant list.
Yep, that's right. Every call results in a frantic reach for the phone. Typically, it's just an automated voice offering me a free cruise or life insurance. I have no idea how they get around the nomorobo, but alas... they do.
So yeah, I'm pretty much just waiting.
Mike was contacted and told to start his donor testing. He went in at the beginning of July for glucose monitoring testing. Unfortunately, his results came back slightly elevated. They discussed his case at the transplant committee meeting yesterday and decided to deny him as a donor. So today I got a letter saying that they have exhausted all of my potential living donors.
Mike isn't giving up. Even though he's already lost 30 pounds, he's determined to lose more to qualify. I don't want him to risk his health in any way, so I have to have faith that the hospital team will make the most appropriate decision regarding his situation. Obviously, I have a lot of concern about him donating a kidney and then experiencing his own medical issues, and I don't want him to sacrifice his health for me. It's a complicated situation. He'll be able to repeat the glucose monitoring test again, so we'll just see where that goes.
So I suppose it's worth mentioning again that - if you have any interest in being a living donor - you can check out this link to apply and be considered. There are several different options, including paired donations. I'd sign up and donate one of my kidneys, but - well - you know...
In the meantime, it looks like I'll be most likely receiving a kidney from a deceased donor. Someday, sometime, probably when I'm least expecting it, I'll get a call offering me a kidney, and I'll head to the hospital.
Those of you who know me well know that retaining a sense of control in an out of control situation is presenting a bit of challenge for me. So I'm working on that. All I can do is live my life and just take things day by day.
I'm getting excited for another school year, so I've been starting to "gear up" for returning to the classroom in the fall. You fellow teachers out there know that the end of July and August is often spent scrolling through Pinterest, reading articles, and making "new school year resolutions." I do this every summer, and - truly - it's one of my favorite parts of teaching. I love the way the school year wraps up in early June with a sense of finality. The books are packed up, chairs are stacked, doors are locked, and the classroom closes. For the first few weeks of summer, I read, lounged, did long-neglected household chores, and took care of medical appointments. Now that we're closing in on the last month of summer, I'm shifting my focus to 2017-2018. It's a great diversion from waiting for the phone to ring.
I've also been working with the endocrinologist. He put me on a medication that is an injection. I took it for a week, and it made me feel terribly ill. My blood pressure dropped very low, and I was shaky and light-headed. I was nauseated constantly and had absolutely no appetite, so I stopped the weight loss medication, got off my blood pressure meds (yay!), and worked using calorie restriction and exercise alone for 3 weeks. While I did lose a good chunk of weight, I also lost muscle mass. Muscle wasting is a side-effect of kidney failure, so I have the added challenge of trying to get plenty of protein on limited calories and with minimal appetite. The doctor put me back on half-doses of the medication to see if it will help suppress my appetite while avoiding the nausea. Kidney patients tend to be more sensitive to medication side effects since our bodies have issues filtering, so we're hopeful that the half-dose will help with appetite suppression without the nasty GI issues. Apparently, this medication actually works as a hormone to slow the process of digestion (gastric emptying). My nausea was likely a result of drinking too many liquids and having "water belly" constantly. So now, I need to focus on limiting my intake of food or beverages to about 1 cup at a time to allow my body to slowly process everything. I'm only one day in on the restarted medication, but so far it's much better this time around.
Other than that, not much else is new. Mike and I are working out quite a bit, and we're definitely eating very healthy. I'm excited about going back to school, and my "go bag" is ready for the day I get the call to head to the hospital. I'm hopeful, encouraged, and feeling all the incredible love and support coming my way. I'm beyond grateful. We'll keep you updated, and thank you for keeping us in your prayers.
In the meantime, you know where I'll be:
#teamkidney
The last few weeks have been somewhat uneventful at Chez Penny, but I do have some updates to share.
First, this is pretty much the best way to depict my state of mind since being placed on the transplant list.
Yep, that's right. Every call results in a frantic reach for the phone. Typically, it's just an automated voice offering me a free cruise or life insurance. I have no idea how they get around the nomorobo, but alas... they do.
So yeah, I'm pretty much just waiting.
Mike was contacted and told to start his donor testing. He went in at the beginning of July for glucose monitoring testing. Unfortunately, his results came back slightly elevated. They discussed his case at the transplant committee meeting yesterday and decided to deny him as a donor. So today I got a letter saying that they have exhausted all of my potential living donors.
Mike isn't giving up. Even though he's already lost 30 pounds, he's determined to lose more to qualify. I don't want him to risk his health in any way, so I have to have faith that the hospital team will make the most appropriate decision regarding his situation. Obviously, I have a lot of concern about him donating a kidney and then experiencing his own medical issues, and I don't want him to sacrifice his health for me. It's a complicated situation. He'll be able to repeat the glucose monitoring test again, so we'll just see where that goes.
So I suppose it's worth mentioning again that - if you have any interest in being a living donor - you can check out this link to apply and be considered. There are several different options, including paired donations. I'd sign up and donate one of my kidneys, but - well - you know...
In the meantime, it looks like I'll be most likely receiving a kidney from a deceased donor. Someday, sometime, probably when I'm least expecting it, I'll get a call offering me a kidney, and I'll head to the hospital.
Those of you who know me well know that retaining a sense of control in an out of control situation is presenting a bit of challenge for me. So I'm working on that. All I can do is live my life and just take things day by day.
I'm getting excited for another school year, so I've been starting to "gear up" for returning to the classroom in the fall. You fellow teachers out there know that the end of July and August is often spent scrolling through Pinterest, reading articles, and making "new school year resolutions." I do this every summer, and - truly - it's one of my favorite parts of teaching. I love the way the school year wraps up in early June with a sense of finality. The books are packed up, chairs are stacked, doors are locked, and the classroom closes. For the first few weeks of summer, I read, lounged, did long-neglected household chores, and took care of medical appointments. Now that we're closing in on the last month of summer, I'm shifting my focus to 2017-2018. It's a great diversion from waiting for the phone to ring.
I've also been working with the endocrinologist. He put me on a medication that is an injection. I took it for a week, and it made me feel terribly ill. My blood pressure dropped very low, and I was shaky and light-headed. I was nauseated constantly and had absolutely no appetite, so I stopped the weight loss medication, got off my blood pressure meds (yay!), and worked using calorie restriction and exercise alone for 3 weeks. While I did lose a good chunk of weight, I also lost muscle mass. Muscle wasting is a side-effect of kidney failure, so I have the added challenge of trying to get plenty of protein on limited calories and with minimal appetite. The doctor put me back on half-doses of the medication to see if it will help suppress my appetite while avoiding the nausea. Kidney patients tend to be more sensitive to medication side effects since our bodies have issues filtering, so we're hopeful that the half-dose will help with appetite suppression without the nasty GI issues. Apparently, this medication actually works as a hormone to slow the process of digestion (gastric emptying). My nausea was likely a result of drinking too many liquids and having "water belly" constantly. So now, I need to focus on limiting my intake of food or beverages to about 1 cup at a time to allow my body to slowly process everything. I'm only one day in on the restarted medication, but so far it's much better this time around.
Other than that, not much else is new. Mike and I are working out quite a bit, and we're definitely eating very healthy. I'm excited about going back to school, and my "go bag" is ready for the day I get the call to head to the hospital. I'm hopeful, encouraged, and feeling all the incredible love and support coming my way. I'm beyond grateful. We'll keep you updated, and thank you for keeping us in your prayers.
In the meantime, you know where I'll be:
#teamkidney
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