A phone call
Well, hello there...
I know... it's been a while. I suppose I haven't posted because I didn't feel like I had any news to share. I've been rocking and rolling along on peritoneal dialysis for the last five years, and - to be honest - I think I've been on a bit of auto-pilot. I read through some of my old posts, and dang... what a journey.
So here's the update...
Remember that whole kidney transplant thing? To catch you up, in 2011, before starting dialysis, I went to UTSW to be evaluated for a transplant, and they basically said I need to go lose 60 pounds and the come back. Well, for any of you who have struggled with your weight, you know it's not exactly that easy. I worked on my own to stabilize my illness and lose weight for about 4 years, but had only lost about 10 pounds. So I decided to join Weight Watchers in October of 2015. The program had worked well for me before, and I knew it would allow me to implement my special renal diet. I dropped about 35 pounds within 8 months or so, but then I just sort of stopped and got stuck for about 8 months. I didn't gain any back, but I wasn't losing either. Anyway, I decided that it was time to get this done. I was within 30 pounds of transplant, and I knew that I could do this!
I recommitted to Weight Watchers and began tracking my points diligently again. Pretty soon, my nephrologist noticed, and he contacted the transplant team at UTSW. So, a couple of Fridays ago, I got a call from UTSW's transplant team, inviting me to apply. I told them I had more weight to lose, and the lead nurse asked for my current height and weight. She figured my BMI and told me that I was eligible to apply for transplant.
Wait, what?
Wait.
I thought...
I thought I had to lose more weight. I thought I couldn't apply until I hit the goal BMI, which is still 30 pounds away. What?
She repeated herself, saying that I could apply. I was under the limit.
Under. The. Limit.
She said she would email me the application packet, and I should complete it and send it back. An hour later, I had turned in the paperwork. I reached out to her again this past Friday to check and see where we were on the process, and she said they are waiting for my dialysis clinic to send in the paperwork. I have my monthly clinic visit at the dialysis center on Wednesday, and I'll be making sure they've sent in the paperwork by then.
Based on what Laura, the lead transplant nurse, told me, the first step of this journey is the application. Done. The next step is to collect paperwork and medical history from the dialysis center. After that, they'll be working with my insurance companies to get financial clearance. Then I'll be called in for testing. I'm not sure what kinds of tests will be required, but there will be a series of procedures to ensure that my body is "well-enough" to take transplant and make it through major surgery. If I pass all of those tests, they'll list me. The great news is that my "listed" date will be the first day of dialysis, so that means that I'll already have 5 years "on the list." The average wait for a kidney is 3-5 years. That means that - once listed - I just have to wait for the call.
Living donors are also a possibility, and living kidneys tend to yield better results than cadaver kidneys, but that's a whole other process involving testing for the donor, matching, etc.
Anyway, it's all a tad overwhelming, and I've been dealing with that from time to time. There are moments when I'm shocked and awed, moments when my chest seizes in fear, moments when I'm wide-eyed and optimistic, and moments when I'm consumed with flashes of my time in Hotel Centennial.
I've tried to read up a bit because I've learned that knowledge is power for me. It tends to calm my neurotic monkey mind. But I have also learned that I have an obsessive mind, and - to be honest - I think there's a little post-traumatic stress buried deep inside from 2011. So I'm trying to keep pretty "zen" about the whole thing.
I will say this, though. Nothing is as motivational as this phone call and first step. I have started losing weight again....finally...and I'm determined to get this done. I envision myself strong, powerful, and healthy again. I keep that vision of myself in my mind's eye, front and center, to make sure I maintain focus.
If this works out.... if I get a transplant... I will have been given a second chance in life. I am determined not to waste that chance. I have always been a "good patient." I follow directions well, am compliant, speak up when needed, and listen carefully to my doctors and nurses.
Right now, the biggest thing I have to focus on is being patient, allowing the steps of this process to work themselves out in due time. Now that I see this option, laid out before me, it's hard not to push things to move more quickly. But I realize that this may take some time. And while I'm waiting, I will be preparing my body for its second chance.
So, my friends... stay posted for updates. I hope I will have a lot to share in the coming weeks. In the meantime, please keep us in your thoughts and prayers. I could use prayers for strength, fortitude, patience, and tenacity.
Thank you, dear friends, for your continued love and support. This blog has always been a source of love and strength for me, and I appreciate you all more than you know.
I know... it's been a while. I suppose I haven't posted because I didn't feel like I had any news to share. I've been rocking and rolling along on peritoneal dialysis for the last five years, and - to be honest - I think I've been on a bit of auto-pilot. I read through some of my old posts, and dang... what a journey.
So here's the update...
Remember that whole kidney transplant thing? To catch you up, in 2011, before starting dialysis, I went to UTSW to be evaluated for a transplant, and they basically said I need to go lose 60 pounds and the come back. Well, for any of you who have struggled with your weight, you know it's not exactly that easy. I worked on my own to stabilize my illness and lose weight for about 4 years, but had only lost about 10 pounds. So I decided to join Weight Watchers in October of 2015. The program had worked well for me before, and I knew it would allow me to implement my special renal diet. I dropped about 35 pounds within 8 months or so, but then I just sort of stopped and got stuck for about 8 months. I didn't gain any back, but I wasn't losing either. Anyway, I decided that it was time to get this done. I was within 30 pounds of transplant, and I knew that I could do this!
I recommitted to Weight Watchers and began tracking my points diligently again. Pretty soon, my nephrologist noticed, and he contacted the transplant team at UTSW. So, a couple of Fridays ago, I got a call from UTSW's transplant team, inviting me to apply. I told them I had more weight to lose, and the lead nurse asked for my current height and weight. She figured my BMI and told me that I was eligible to apply for transplant.
Wait, what?
Wait.
I thought...
I thought I had to lose more weight. I thought I couldn't apply until I hit the goal BMI, which is still 30 pounds away. What?
She repeated herself, saying that I could apply. I was under the limit.
Under. The. Limit.
She said she would email me the application packet, and I should complete it and send it back. An hour later, I had turned in the paperwork. I reached out to her again this past Friday to check and see where we were on the process, and she said they are waiting for my dialysis clinic to send in the paperwork. I have my monthly clinic visit at the dialysis center on Wednesday, and I'll be making sure they've sent in the paperwork by then.
Based on what Laura, the lead transplant nurse, told me, the first step of this journey is the application. Done. The next step is to collect paperwork and medical history from the dialysis center. After that, they'll be working with my insurance companies to get financial clearance. Then I'll be called in for testing. I'm not sure what kinds of tests will be required, but there will be a series of procedures to ensure that my body is "well-enough" to take transplant and make it through major surgery. If I pass all of those tests, they'll list me. The great news is that my "listed" date will be the first day of dialysis, so that means that I'll already have 5 years "on the list." The average wait for a kidney is 3-5 years. That means that - once listed - I just have to wait for the call.
Living donors are also a possibility, and living kidneys tend to yield better results than cadaver kidneys, but that's a whole other process involving testing for the donor, matching, etc.
Anyway, it's all a tad overwhelming, and I've been dealing with that from time to time. There are moments when I'm shocked and awed, moments when my chest seizes in fear, moments when I'm wide-eyed and optimistic, and moments when I'm consumed with flashes of my time in Hotel Centennial.
I've tried to read up a bit because I've learned that knowledge is power for me. It tends to calm my neurotic monkey mind. But I have also learned that I have an obsessive mind, and - to be honest - I think there's a little post-traumatic stress buried deep inside from 2011. So I'm trying to keep pretty "zen" about the whole thing.
I will say this, though. Nothing is as motivational as this phone call and first step. I have started losing weight again....finally...and I'm determined to get this done. I envision myself strong, powerful, and healthy again. I keep that vision of myself in my mind's eye, front and center, to make sure I maintain focus.
If this works out.... if I get a transplant... I will have been given a second chance in life. I am determined not to waste that chance. I have always been a "good patient." I follow directions well, am compliant, speak up when needed, and listen carefully to my doctors and nurses.
Right now, the biggest thing I have to focus on is being patient, allowing the steps of this process to work themselves out in due time. Now that I see this option, laid out before me, it's hard not to push things to move more quickly. But I realize that this may take some time. And while I'm waiting, I will be preparing my body for its second chance.
So, my friends... stay posted for updates. I hope I will have a lot to share in the coming weeks. In the meantime, please keep us in your thoughts and prayers. I could use prayers for strength, fortitude, patience, and tenacity.
Thank you, dear friends, for your continued love and support. This blog has always been a source of love and strength for me, and I appreciate you all more than you know.
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