Next Stop: Dialysis and Transplant
Today I took a day off of work to visit UT Southwestern's neprology department and discuss my options for continued treatment. Thankfully, Mike was able to go with me, so I had lots of great support. The nephrologist spent over an hour with us discussing my options. I had planned to get a fistula surgery done next Friday so I would be ready for hemodialysis. However, today, after discussing my lifestyle and health goals, the doctor suggested peritoneal dialysis. A website that describes this is:
http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/
Basically, I would have a soft catheter implanted into my abdomen wall right below my belly button. Then, my abdomen would be filled with about 2 liters of dialysis solution. The toxins and wastes in my blood, which are usually filtered by the kidneys, would then be absorbed by the solution. At night, I would hook myself up to a pump that would exchange the dirty fluid for fresh solution while I sleep. I would probably have 3-4 exchanges (rinses) a night. In the morning, my abdomen would be filled with fresh solution that would stay in my belly all day.
The doctor explained that this type of dialysis has several advantages. First, because I work full-time and lead an active lifestyle, this would give me the freedom to do dialysis at home on my own schedule. Even though there is at-home hemodiaylsis (where the blood is filtered in a machine), I would have to start with 3-4 months of in-center hemodialysis, requiring me to leave work early and go sit at a center for 4 hours three times a week. Second, peritoneal dialysis has been shown to have better results because it is a slower and more continual process. Hemodialysis allows toxins to build up in your system for 2 days, whereas peritoneal dialysis allows for constant cleansing of the blood, more like natural kidneys. Third, studies have shown that kidney transplant patients who did peritoneal dialysis have better results/prognosis than patients who did hemodialysis. Fourth, when I receive a kidney transplant and no longer need dialysis, the catheter can be removed, whereas the fistula required for hemodialysis can not be reversed.
Originally, my nephrologist here in Plano told me that peritoneal dialysis wasn't a good option for me because it uses dextrose, which the body converts to glucose. He had concerns about my blood sugar level and diabetes. However, the doctor at UT Southwestern explained that over half of his PD patients are diabetic, and that there are three different solutions (low, medium, and high dextrose). So, he just suggested that I use the low glucose level.
On Monday I have an appointment with my regular nephrologist, and we'll discuss the options. Right now, I feel pretty strongly about choosing peritoneal dialysis. I am supposed to have a fistula surgery done on next Friday, but I believe I will cancel that as long as my regular doctor is on board.
Another cool aspect, which doesn't really have anything to do with my decision-making process, but is a kind of "bonus", is that Dr. S at UT Southwestern is working on stem-cell research with PD patients. So, I would be a study participant if I chose PD.
The other big topic of discussion today was kidney transplant. The doctor referred me to the transplant clinic, and I should be contacted next week to schedule the testing and to sign up for an informational class. The only other thing I have to do to prepare for the transplant is to continue to lose weight. I'm down about 40 pounds, but I need to lose another 60-65. I'll start the transplant testing process, and at some point, they will tell me to go lose weight. However, the doctor suggested that I go ahead and start the process, because once I do, I can utilize the hospital's resources for preparation (nutritionist, dietitan, etc.) and insurance will cover everything because it's in pursuit of an approved transplant.
We discussed finding donors, and the doctor said that most people have to wait at least 3 years for a kidney if they don't have a live donor. Mike offered one of his kidneys to me, as long as he's a good match. I don't even have words to express how I feel about that gesture. I am so moved by his selflessness.
I asked what side effects Mike should expect if he donated a kidney, and the doctor said he'd be at a higher risk for high blood pressure, but that's about it. Once the transplant team approves me for transplant, they will start testing possible donors, so it'll be a while before we know if he's a match.
After my appointment at UT Southwestern, Mike and I had lunch and browsed some cool furniture stores. After dropping him back off at work, I met my mom and my sweet friend at a local salon and boutique called Survivor Gals. The shop focuses on solutions for women with medical hair loss, and the owners are cancer survivors themselves. Ever since my summer infections and hospital stay, my hair has been slowly coming out, especially at the crown. Recently, it's been shedding by the handfuls, and my scalp is looking quite bare. Today, I had hoped to get a cute short haircut, but my hair has gotten too thin.
My second option was to shave it all off, but the hairdresser said she wouldn't recommend that because I still had so much pretty hair on the sides and back. Her recommendation was a hairpiece. Or, as it seemed to me, a female version of a toupe. I really don't like the idea of fake hair. I would feel so phony, and I know it would make me really self-conscious. She put on a hair piece that was long and blonde and told me to imagine it in my own hair color and trimmed to fit my hairstyle. Even then, it still looked like Barbie hair. Or, as my mom said, it looked like a dead squirrel... Haha!!! Needless to say, we decided it wasn't worth $215.00.
Instead, we tried on some cute hats and scarves. Some of the scarves made me either look REALLY sick or like a really masculine biker chick. We settled on a very cute black straw Fedora hat from the sale bin and an adorable plaid felt cap. Mike says it makes me look like a cute and sassy Sherlock Holmes. Also, if I wear my hair half up in a clip, the sides of my hair cover my bald spot. So, between hats, scarves, and clips, we decided to leave my hair the way it is. Once it starts to grow back in, I'll probably cut it short so it'll grow in evenly, but until then, I'll leave the rest longer so I can pull it back.
I was really nervous about today, but I feel so much better now knowing that I have options and can take the path of least resistance regarding my hair, dialysis, and even transplant. I'm feeling so good right now, and I'm so surrounded in loving support, so I know that I'll be able to get ready for transplant and make it though all of this.
Today I had so many people by my side, ready to hold my hand for every step. I feel so incredibly blessed and confident that I'll have the support I'll need for the next steps on my path. I've had so many people tell me that I'm strong, but it truly is only a result of the strength of those around me. I keep thinking of a line from one of my favorite books, Les Miserables: "Thanks to him, she could walk upright in life; thanks to her, he could persist in virtuous deeds. He was the support of this child, and this child was his prop and staff." Just like Jean Valjean found comfort and virture from the love of Cosette, I find strength from the love of you all. I'm one very blessed girl.
http://kidney.niddk.nih.gov/kudiseases/pubs/peritoneal/
Basically, I would have a soft catheter implanted into my abdomen wall right below my belly button. Then, my abdomen would be filled with about 2 liters of dialysis solution. The toxins and wastes in my blood, which are usually filtered by the kidneys, would then be absorbed by the solution. At night, I would hook myself up to a pump that would exchange the dirty fluid for fresh solution while I sleep. I would probably have 3-4 exchanges (rinses) a night. In the morning, my abdomen would be filled with fresh solution that would stay in my belly all day.
The doctor explained that this type of dialysis has several advantages. First, because I work full-time and lead an active lifestyle, this would give me the freedom to do dialysis at home on my own schedule. Even though there is at-home hemodiaylsis (where the blood is filtered in a machine), I would have to start with 3-4 months of in-center hemodialysis, requiring me to leave work early and go sit at a center for 4 hours three times a week. Second, peritoneal dialysis has been shown to have better results because it is a slower and more continual process. Hemodialysis allows toxins to build up in your system for 2 days, whereas peritoneal dialysis allows for constant cleansing of the blood, more like natural kidneys. Third, studies have shown that kidney transplant patients who did peritoneal dialysis have better results/prognosis than patients who did hemodialysis. Fourth, when I receive a kidney transplant and no longer need dialysis, the catheter can be removed, whereas the fistula required for hemodialysis can not be reversed.
Originally, my nephrologist here in Plano told me that peritoneal dialysis wasn't a good option for me because it uses dextrose, which the body converts to glucose. He had concerns about my blood sugar level and diabetes. However, the doctor at UT Southwestern explained that over half of his PD patients are diabetic, and that there are three different solutions (low, medium, and high dextrose). So, he just suggested that I use the low glucose level.
On Monday I have an appointment with my regular nephrologist, and we'll discuss the options. Right now, I feel pretty strongly about choosing peritoneal dialysis. I am supposed to have a fistula surgery done on next Friday, but I believe I will cancel that as long as my regular doctor is on board.
Another cool aspect, which doesn't really have anything to do with my decision-making process, but is a kind of "bonus", is that Dr. S at UT Southwestern is working on stem-cell research with PD patients. So, I would be a study participant if I chose PD.
The other big topic of discussion today was kidney transplant. The doctor referred me to the transplant clinic, and I should be contacted next week to schedule the testing and to sign up for an informational class. The only other thing I have to do to prepare for the transplant is to continue to lose weight. I'm down about 40 pounds, but I need to lose another 60-65. I'll start the transplant testing process, and at some point, they will tell me to go lose weight. However, the doctor suggested that I go ahead and start the process, because once I do, I can utilize the hospital's resources for preparation (nutritionist, dietitan, etc.) and insurance will cover everything because it's in pursuit of an approved transplant.
We discussed finding donors, and the doctor said that most people have to wait at least 3 years for a kidney if they don't have a live donor. Mike offered one of his kidneys to me, as long as he's a good match. I don't even have words to express how I feel about that gesture. I am so moved by his selflessness.
I asked what side effects Mike should expect if he donated a kidney, and the doctor said he'd be at a higher risk for high blood pressure, but that's about it. Once the transplant team approves me for transplant, they will start testing possible donors, so it'll be a while before we know if he's a match.
After my appointment at UT Southwestern, Mike and I had lunch and browsed some cool furniture stores. After dropping him back off at work, I met my mom and my sweet friend at a local salon and boutique called Survivor Gals. The shop focuses on solutions for women with medical hair loss, and the owners are cancer survivors themselves. Ever since my summer infections and hospital stay, my hair has been slowly coming out, especially at the crown. Recently, it's been shedding by the handfuls, and my scalp is looking quite bare. Today, I had hoped to get a cute short haircut, but my hair has gotten too thin.
My second option was to shave it all off, but the hairdresser said she wouldn't recommend that because I still had so much pretty hair on the sides and back. Her recommendation was a hairpiece. Or, as it seemed to me, a female version of a toupe. I really don't like the idea of fake hair. I would feel so phony, and I know it would make me really self-conscious. She put on a hair piece that was long and blonde and told me to imagine it in my own hair color and trimmed to fit my hairstyle. Even then, it still looked like Barbie hair. Or, as my mom said, it looked like a dead squirrel... Haha!!! Needless to say, we decided it wasn't worth $215.00.
Instead, we tried on some cute hats and scarves. Some of the scarves made me either look REALLY sick or like a really masculine biker chick. We settled on a very cute black straw Fedora hat from the sale bin and an adorable plaid felt cap. Mike says it makes me look like a cute and sassy Sherlock Holmes. Also, if I wear my hair half up in a clip, the sides of my hair cover my bald spot. So, between hats, scarves, and clips, we decided to leave my hair the way it is. Once it starts to grow back in, I'll probably cut it short so it'll grow in evenly, but until then, I'll leave the rest longer so I can pull it back.
I was really nervous about today, but I feel so much better now knowing that I have options and can take the path of least resistance regarding my hair, dialysis, and even transplant. I'm feeling so good right now, and I'm so surrounded in loving support, so I know that I'll be able to get ready for transplant and make it though all of this.
Today I had so many people by my side, ready to hold my hand for every step. I feel so incredibly blessed and confident that I'll have the support I'll need for the next steps on my path. I've had so many people tell me that I'm strong, but it truly is only a result of the strength of those around me. I keep thinking of a line from one of my favorite books, Les Miserables: "Thanks to him, she could walk upright in life; thanks to her, he could persist in virtuous deeds. He was the support of this child, and this child was his prop and staff." Just like Jean Valjean found comfort and virture from the love of Cosette, I find strength from the love of you all. I'm one very blessed girl.
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