Stranger from Afar
Hello hello.
I'm not even going to get into how long it's been since I've written.
I was sitting in class the other day, and I just got very overwhelmed with the idea of having a kidney transplant in my life at some point. What will it feel like? Will my scars fade away? Who's kidney will I get? Why won't they be needing it anymore? How much pain will I be in? How bad is it going to hurt? Will the needles bother me more than the surgery? Or by the end will I just not even have a fear of needles anymore?
All of this was brought on by my final and last visit to Colorado. Well rather, the results. Basically I found out that my kidneys grow at a rate of 10% per year which is more than the average PKD patient. Most children in the study grew at about 7.4%. Note: This is all off the top of my head, I'll put my exact stats up here later.
My function is still good and all that jazz, but my kidneys are a total of 1331 ML, and at 1500 ML the kidney function usually starts to go on.
Well damn.
The whole time that I've been dealing with PKD, I've said to myself and others that I will probably need a kidney transplant, but I'll be fine. But in the back of my mind I had a glimmer of hope that perhaps I would live to see the time when I could grow my own kidney, or a cure would be found, or that my case was so special that my kidneys grow really slowly and I don't need a transplant at all. I know that chance is still there, but I'm pretty positive that a transplant might be in my future. It's just a new confirmation I guess.
Why am I growing so quickly? Why do my kidneys have to be different than the average?
Basically, I want to start writing more because I think that writing about all this stuff, regardless of if someone reads it or not helps. It helps to know that there might be someone out there who has the same fears as me who is reading this and saying, "yes Lydia! i understand! this sucks! lets just feel better about the situation because someone else feels the same way!"
Because I'm fine now, but the fact is that later in my life I won't be as fine. That doesn't mean I won't be fine forever, because I will of course be fine again.
But I know it's all going to be okay, because it has to be. Look at my Dad! He's doing great and things are going so well for him. I believe that this will all end according to plan, I just wish I knew what the plan was, and what it's all going to be like.
I know that my situation is nothing at all compared to the huge medical issues and problems that other people are dealing with, but that doesn't lessen it at all for me. Because everything is different from your own perspective, and no feeling that you have is wrong- it's what you feel. Because even if I compare it to other people who are dealing with harder problems, that doesn't have anything to do with how this is personally effecting me now. It's hard to come to terms with having something wrong with you, no matter how big or small it might be. It's hard to have to accept that at some point in your life, you will have to undergo a surgery because part of you doesn't work the right way.
So if anyone's out there, I'm here.
I'm not even going to get into how long it's been since I've written.
I was sitting in class the other day, and I just got very overwhelmed with the idea of having a kidney transplant in my life at some point. What will it feel like? Will my scars fade away? Who's kidney will I get? Why won't they be needing it anymore? How much pain will I be in? How bad is it going to hurt? Will the needles bother me more than the surgery? Or by the end will I just not even have a fear of needles anymore?
All of this was brought on by my final and last visit to Colorado. Well rather, the results. Basically I found out that my kidneys grow at a rate of 10% per year which is more than the average PKD patient. Most children in the study grew at about 7.4%. Note: This is all off the top of my head, I'll put my exact stats up here later.
My function is still good and all that jazz, but my kidneys are a total of 1331 ML, and at 1500 ML the kidney function usually starts to go on.
Well damn.
The whole time that I've been dealing with PKD, I've said to myself and others that I will probably need a kidney transplant, but I'll be fine. But in the back of my mind I had a glimmer of hope that perhaps I would live to see the time when I could grow my own kidney, or a cure would be found, or that my case was so special that my kidneys grow really slowly and I don't need a transplant at all. I know that chance is still there, but I'm pretty positive that a transplant might be in my future. It's just a new confirmation I guess.
Why am I growing so quickly? Why do my kidneys have to be different than the average?
Basically, I want to start writing more because I think that writing about all this stuff, regardless of if someone reads it or not helps. It helps to know that there might be someone out there who has the same fears as me who is reading this and saying, "yes Lydia! i understand! this sucks! lets just feel better about the situation because someone else feels the same way!"
Because I'm fine now, but the fact is that later in my life I won't be as fine. That doesn't mean I won't be fine forever, because I will of course be fine again.
But I know it's all going to be okay, because it has to be. Look at my Dad! He's doing great and things are going so well for him. I believe that this will all end according to plan, I just wish I knew what the plan was, and what it's all going to be like.
I know that my situation is nothing at all compared to the huge medical issues and problems that other people are dealing with, but that doesn't lessen it at all for me. Because everything is different from your own perspective, and no feeling that you have is wrong- it's what you feel. Because even if I compare it to other people who are dealing with harder problems, that doesn't have anything to do with how this is personally effecting me now. It's hard to come to terms with having something wrong with you, no matter how big or small it might be. It's hard to have to accept that at some point in your life, you will have to undergo a surgery because part of you doesn't work the right way.
So if anyone's out there, I'm here.
Comments
Both my husband and my son have PKD. When we found out that my husband had PDK I just couldn't understand how this could happen to him. Then we found out our, then 10 year old, son had PKD and his had rare side affects that usually go with ARPKD.
My first thought was couldn't he just have it normal? I would prefer not at all but why is his different?