Recovery & Looking Forward (and Back)
I can't quite believe this, but yesterday marked 8 weeks from transplant! Things have been going very well during these last two months. I've been recovering at home, and I've enjoyed some relaxing time reading, watching Netflix, and catching up on household chores.
When I was released from the hospital, I had Steri-strips along my incisions and a list of activity restrictions: no driving, no lifting, no exercise except gentle walking in the house, no crowds, no shopping at stores, no visiting kids, and no time spent outside. Since then, some of the restrictions have been lifted. I can drive again, and I can go outside for short periods of time as long as I wear a surgical mask. I can go to stores as long as they aren't busy (so no weekends or evenings), and I have to wear my surgical mask at all times, clean my hands thoroughly, and wipe down the carts. Needless to say, we've become BIG fans of curbside pick-up for groceries and Amazon for delivery of basic household items.
I was released from the hospital on a Thursday, and we got my dialysis machine out of the bedroom that afternoon. For the first time in 6 1/2 years, I got to sleep in my bedroom without worrying about dialysis. It was awesome! That weekend, Mike cleaned out all the dialysis supplies from the guest room. We lined it all up in the garage for bulk trash pickup. That was probably one of the most powerful moments I experienced. Peritoneal dialysis was good to me, and it kept me alive and relatively healthy for years, but seeing that machine packed up for UPS and all those boxes of supplies sitting on the curb was a moment of closure.
Following my release from the hospital, Dr. Rojas (my nephrologist and transplant specialist) wanted to watch me closely. She was quite concerned because they had given me the less powerful infusion during transplant, and it would take time for the anti-rejection meds to build up in my system. She was worried that my body would begin rejecting the kidney before the meds reached a therapeutic level in my blood, so I was asked to come in for labs every single day (including Saturdays) for the first couple of weeks I was home. I couldn't drive for 4-6 weeks, so my mom graciously drove me down to UTSW early every morning. The following Friday, my Aunt Renee arrived from Colorado. She stayed for a few weeks and helped with cooking, walking the dogs, and driving me to appointments. It was awesome to have the time to visit with her, and she's a great cook! Mike and I were definitely spoiled!
Eventually, as the medication levels began to climb, my doctor began backing down to visits 3 times a week, and now we're at 2 times a week. Throughout the last 8 weeks, my labs have been stable, but those first few weeks were nuts with all of the medication changes. I would get multiple phone calls or messages every day...add 1 mg of Prograf...drop the Myfortic to 540 mg...add Magnesium supplements...increase Prograf... During that time, the majority of my day was spent tweaking my medications in my pill organizer, tracking my vitals, and resting. Now, I mainly get messages saying, "Labs are stable. No med changes." I don't have to track quite as many things anymore, and since I'm only having to go in twice a week, I have more time to do other things.
For the last few years, I've been toying with the idea of getting my principal certification. I think that certification will open up some additional doors to me in educational administration, so I decided that - now that I had a new kidney that was working well - it is time to jump in and get started. I enrolled in an online certification program through Lamar University. Since I already have my Master's in Education degree, I only have to take 6 classes to earn the certification. My first class starts on Monday, and I should be finished with the program in April of 2019. I'm excited about this because I know it will help me grow and develop in my profession, and now I finally feel ready to tackle the classes.
It's amazing how much time and energy I was unconsciously spending thinking about dialysis or getting a transplant. Every time I'd think of going on a trip or starting something new (like this principal certification), my excitement would be tempered with thoughts about dialysis or transplant. For 7 1/2 years, kidney disease has been at the top of my priority list. Of course, post-transplant still requires a lot of maintenance, but the peace of mind that comes with transplant has been incredible. I finally feel like many of the things I've been thinking about for years are possible.
I also see this transplant as a "rebirth" of sorts. Moving forward, it's imperative that my lifestyle adjusts to accommodate for this incredible gift I've been given. That means Mike and I are adhering to a healthy, Mediterranean-style diet, and stress-management and exercise will be key areas of focus for us. I want to do everything in my power to maintain this transplant and honor this gift I've been given. In fact, it's odd because - for the first time in my life - my doctor has told me NOT to lose any weight. She wants the new kidney to stay happy, and losing weight puts stress on your body, so I've been told to maintain my pre-transplant weight for the time being. I'm actually really looking forward to getting back into the gym and being able to lose some more weight. Who would have ever thought I would have said that!?!?!
I have been so incredibly blessed with love and support through all of this. Thank you so much for that. I started this blog as a place to post medical updates around my diagnosis. This was primarily selfish in nature because discussing my illness back then was difficult. I was struggling with acceptance of many aspects of chronic illness, so having a central place to post what was going on gave me an opportunity to step back and better manage my emotions while still sharing important information with my concerned friends and family.
Over the years, this blog has become a living journal of sorts. I've been much more candid than I ever thought I'd be, and that has been good for me. Seven and a half years ago, when I was diagnosed, I had to make a decision about what kind of dialysis I would want to do. After going back and forth between hemodialysis and peritoneal dialysis, I settled on PD. A hemodialysis fistula is permanent (and often quite disfiguring), and the PD catheter is removable. I remember saying to my doctor, "I want to do PD. Someday, I'll get a new kidney, and they'll remove my PD catheter, and it will be like this never happened."
I think back to that statement and can't help but laugh a little. I was so naive.
That day has finally come. My PD catheter has been removed. I've got a new kidney. But I was wrong. It will NEVER be like this didn't happen. I look in the mirror and see the scars left by the treatments, medications, and surgeries. I'm not self-conscious about them, though. They are battle scars. And I earned every single one of them. Also, transplant isn't a cure. It's a treatment option. A good treatment option, but still not a magic wand. I still have chronic kidney disease secondary to granulomatosis with polyangiitis. The GPA diagnosis won't ever go away. There's no cure for that. But - for the first time in years - my CBC results look "normal."
This journey has changed me in ways I can't even begin to describe. I believe that I have learned to have greater compassion...for myself and others. I've learned to value myself, honor and respect my body, and manage my stress levels more effectively. I've learned to be more mindful of how precious each day is, how little some things matter in the long run, and the value of surrounding myself with positivity and kindness. I've learned that others are dealing with their own battles that we know nothing about, so we have to be patient and - above all else - kind.
A week or so after transplant, my therapist called me to check in. She asked if I needed to do some Skype sessions, and - for the first time in a while - I told her, "Thank you, but I am doing well." This blog and the support from each of you have helped me get to that point. I feel loved, supported, and so incredibly grateful for each and every one of you. Thank you for being a part of this experience.
When I was released from the hospital, I had Steri-strips along my incisions and a list of activity restrictions: no driving, no lifting, no exercise except gentle walking in the house, no crowds, no shopping at stores, no visiting kids, and no time spent outside. Since then, some of the restrictions have been lifted. I can drive again, and I can go outside for short periods of time as long as I wear a surgical mask. I can go to stores as long as they aren't busy (so no weekends or evenings), and I have to wear my surgical mask at all times, clean my hands thoroughly, and wipe down the carts. Needless to say, we've become BIG fans of curbside pick-up for groceries and Amazon for delivery of basic household items.
I was released from the hospital on a Thursday, and we got my dialysis machine out of the bedroom that afternoon. For the first time in 6 1/2 years, I got to sleep in my bedroom without worrying about dialysis. It was awesome! That weekend, Mike cleaned out all the dialysis supplies from the guest room. We lined it all up in the garage for bulk trash pickup. That was probably one of the most powerful moments I experienced. Peritoneal dialysis was good to me, and it kept me alive and relatively healthy for years, but seeing that machine packed up for UPS and all those boxes of supplies sitting on the curb was a moment of closure.
Following my release from the hospital, Dr. Rojas (my nephrologist and transplant specialist) wanted to watch me closely. She was quite concerned because they had given me the less powerful infusion during transplant, and it would take time for the anti-rejection meds to build up in my system. She was worried that my body would begin rejecting the kidney before the meds reached a therapeutic level in my blood, so I was asked to come in for labs every single day (including Saturdays) for the first couple of weeks I was home. I couldn't drive for 4-6 weeks, so my mom graciously drove me down to UTSW early every morning. The following Friday, my Aunt Renee arrived from Colorado. She stayed for a few weeks and helped with cooking, walking the dogs, and driving me to appointments. It was awesome to have the time to visit with her, and she's a great cook! Mike and I were definitely spoiled!
Eventually, as the medication levels began to climb, my doctor began backing down to visits 3 times a week, and now we're at 2 times a week. Throughout the last 8 weeks, my labs have been stable, but those first few weeks were nuts with all of the medication changes. I would get multiple phone calls or messages every day...add 1 mg of Prograf...drop the Myfortic to 540 mg...add Magnesium supplements...increase Prograf... During that time, the majority of my day was spent tweaking my medications in my pill organizer, tracking my vitals, and resting. Now, I mainly get messages saying, "Labs are stable. No med changes." I don't have to track quite as many things anymore, and since I'm only having to go in twice a week, I have more time to do other things.
For the last few years, I've been toying with the idea of getting my principal certification. I think that certification will open up some additional doors to me in educational administration, so I decided that - now that I had a new kidney that was working well - it is time to jump in and get started. I enrolled in an online certification program through Lamar University. Since I already have my Master's in Education degree, I only have to take 6 classes to earn the certification. My first class starts on Monday, and I should be finished with the program in April of 2019. I'm excited about this because I know it will help me grow and develop in my profession, and now I finally feel ready to tackle the classes.
It's amazing how much time and energy I was unconsciously spending thinking about dialysis or getting a transplant. Every time I'd think of going on a trip or starting something new (like this principal certification), my excitement would be tempered with thoughts about dialysis or transplant. For 7 1/2 years, kidney disease has been at the top of my priority list. Of course, post-transplant still requires a lot of maintenance, but the peace of mind that comes with transplant has been incredible. I finally feel like many of the things I've been thinking about for years are possible.
I also see this transplant as a "rebirth" of sorts. Moving forward, it's imperative that my lifestyle adjusts to accommodate for this incredible gift I've been given. That means Mike and I are adhering to a healthy, Mediterranean-style diet, and stress-management and exercise will be key areas of focus for us. I want to do everything in my power to maintain this transplant and honor this gift I've been given. In fact, it's odd because - for the first time in my life - my doctor has told me NOT to lose any weight. She wants the new kidney to stay happy, and losing weight puts stress on your body, so I've been told to maintain my pre-transplant weight for the time being. I'm actually really looking forward to getting back into the gym and being able to lose some more weight. Who would have ever thought I would have said that!?!?!
I have been so incredibly blessed with love and support through all of this. Thank you so much for that. I started this blog as a place to post medical updates around my diagnosis. This was primarily selfish in nature because discussing my illness back then was difficult. I was struggling with acceptance of many aspects of chronic illness, so having a central place to post what was going on gave me an opportunity to step back and better manage my emotions while still sharing important information with my concerned friends and family.
Over the years, this blog has become a living journal of sorts. I've been much more candid than I ever thought I'd be, and that has been good for me. Seven and a half years ago, when I was diagnosed, I had to make a decision about what kind of dialysis I would want to do. After going back and forth between hemodialysis and peritoneal dialysis, I settled on PD. A hemodialysis fistula is permanent (and often quite disfiguring), and the PD catheter is removable. I remember saying to my doctor, "I want to do PD. Someday, I'll get a new kidney, and they'll remove my PD catheter, and it will be like this never happened."
I think back to that statement and can't help but laugh a little. I was so naive.
That day has finally come. My PD catheter has been removed. I've got a new kidney. But I was wrong. It will NEVER be like this didn't happen. I look in the mirror and see the scars left by the treatments, medications, and surgeries. I'm not self-conscious about them, though. They are battle scars. And I earned every single one of them. Also, transplant isn't a cure. It's a treatment option. A good treatment option, but still not a magic wand. I still have chronic kidney disease secondary to granulomatosis with polyangiitis. The GPA diagnosis won't ever go away. There's no cure for that. But - for the first time in years - my CBC results look "normal."
This journey has changed me in ways I can't even begin to describe. I believe that I have learned to have greater compassion...for myself and others. I've learned to value myself, honor and respect my body, and manage my stress levels more effectively. I've learned to be more mindful of how precious each day is, how little some things matter in the long run, and the value of surrounding myself with positivity and kindness. I've learned that others are dealing with their own battles that we know nothing about, so we have to be patient and - above all else - kind.
A week or so after transplant, my therapist called me to check in. She asked if I needed to do some Skype sessions, and - for the first time in a while - I told her, "Thank you, but I am doing well." This blog and the support from each of you have helped me get to that point. I feel loved, supported, and so incredibly grateful for each and every one of you. Thank you for being a part of this experience.
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