Wednesday, February 16, 2011

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.

Tuesday, October 27, 2009

Woah. I'm back.

So I really haven't written since the PKD Convention? If you ask me, that's a little pathetic. :-/

I'm really glad I got to go to that Convention, I learned a lot and got some ideas. I had a lot of questions answered for me; some of them I didn't know I had. I was able to go to my next doctor's appointment very informed and ready with a set of questions to ask him, and a list of little tidbits of information that I wanted to share and have verified.

It was my first appointment without my dad, because he was out of town, but a friend took me there, so that was good. Going to those appointments are always are an "experience" because it's one of the few times out of the year where I really have to deal with PKD as a disease that I currently have. I mean, everyday I still have to take the medicine and every month I send in blood pressure reports, and sometimes I have issues or whatever, but for the most part, because of my age, PKD isn't giving me a lot to worry about. Because of things like the convention and knowing about my dad's experience, I am aware of preventative things I can do (Water. It's the key. There's even a study out there that tells the participants to drink more water, not try out new pills, that has shown success.) and ways to stay healthy so PKD will continue to play a small role in my life.

But when I say life, I guess I really mean health, because PKD has a constant present in my life. It's just at the doctor's office I feel sick, like I'm actually a patient. I don't like the idea of being sick, and I really don't like the idea of having something in my body that is preventing me from doing exactly what I want to do whenever I want to do it. (Yes, I have been called stubborn a few times.)

For example, a week before my doctor's appointment, I organized a little blood drive for one of my friends who has Sickle Cell Anemia. He was undergoing surgery to remove a brain tumor, and to show support, I asked his friends to go out that day and donate blood because with Sickle Cell, regular blood transfusions are needed. I was going to the clinic to donate, and I was filling out the forms, and there it was, that question asking about your kidneys. I put down that I have PKD, but I explained to the nurse that I'm not expected to have complications until later in life and that I was fine now. She looked at my medicines and noticed I was on blood pressure medicine, and informed me that if I have elevated blood pressure my kidneys have some damage to them and that I couldn't donate without a doctor's note.

Yeah, that sucked.

So it's times like that where I have to really deal with the sick part of PKD. The other days I can just be involved in the community and advocacy and whatnot, and that's great. I mean, I get it. It's a disease, it's in my life, and that's okay. Sometimes I just like to have company on the ride to/from the doctor's office. :)

Thursday, June 25, 2009

She's Baaaaaack

Hello Hello!

Here I am, yet again, posting an entry that makes me want to apologize for not writing more. Eh. It happens.

Tomorrow I'm headed off to the National PKD Convention in Chicago, with my parents and little sister. I'm not sure if all of us are attending the conference, but it I know for a fact my dad will be there with me, staying by my side and ready for the questions.
We decided that this would be a good conference to attend for a few reasons: 1-It's not that far away, 2-There are a lot of questions that we have and always love knowing more about PKD and the way things work, and 3- Dad and I were talking after I got my test results from Colorado and we both decided that it is time to know more and for me to find more people my age with PKD.

Basically the information that I got from Colorado confused, and upset, me a little. But then again, I don't know if I have reason to be upset or not, which is why I'm excited to go to the convention, AND I have gotten a list of things I want to ask my doctor when I go for my checkup in July.
This is what I got: (I had to convert all the numbers becuase they were in different units of measurement becuse they were taken directly from the MRI. I might have even converted them wrong, but I know they compute volume so I thought converting them to a weight that I was familiar with would make it wasier to understand.)

My right kidney weighs 20.25oz (1.27lbs) and measures 14.3x9.1x7.9cm. The biggest cyst is 5.6cm.
My left kidney weighs 22.85oz (1.43lbs) and measures 15.4x9x11.3cm. The biggest cyst is 9cm.
My kidneys grow at a rate of 5.2oz a year.
Final Diagnosis: I have severe cystic kidney disease with normal kidney function. I tried to understand how to read the blood/urine tests to check the creatinie level but I wasn't sure how. I think for one test it was 1.3, but I don't know for sure. That will be a question for me to ask Dr. Porile (my nephrologist).

After converting, I did some research so I could put things into perspective. (I really like to know how things work, why they work that way, and understand what is going on in the world around me/my life)

The average adult kidney weighs 4oz (.25lbs)
I also tried to figure out the growth rate, but had some trouble with that one.

Also, as I was reasearching, I read about ADPKD and it's two types; PKD1 and PKD2. The difference between the two is the defect on the chromosone. The majority of the PKD population, roughly 85%, has the first kind, PKD1, which is a mutation on the 16th chromosone. The other part of the PKD population, roughly 15%, has the second kind, PKD2, which is a mutation on the 4th chromosone.
"Cysts and kidney failure occur at an earlier age in PKD1 disease; the average age of end-stage renal disease (that is, needing dialysis or a transplant) is approximately 57 years in PKD1 disease versus 69 years in non-PKD1 disease." (http://www.uptodate.com/patients/content/topic.do?topicKey=~Zn9BAWqzJRzqQZ)

I didn't know that, and I'm sure there is a lot more that I am not aware of, so I'm looking forward to this conference!

Sunday, March 22, 2009

Whoops

This month is National Kidney Month and I've been thinking a lot about them. Kidneys. Life. Etc.

I haven't been updating this. I start to but then I feel like it's just too late and I tell myself that no one is reading it anyway. But then I remember how beneficial blogging has been for me. When I used to do it regularly I really got a chance to let things out and deal with the emotions that I was feeling. Life is a hard thing to have happen to you.
Gross. That was quite corny. My apologies.

Colorado was a very interesting experience. I went there by myself because I'm a legal adult now so my parents didn't need to be there. I had to put my big girl boots on and set myself up for an adventure. It was pretty lonesome; being in the hospital room by myself at night was the worst. The brain really knows when to turn itself on and become obsessive and begin to overanalyze.
Emotions? I felt a little out of place because I was in the Children's Hospital and am 19. And then there was the whole constant reminder of having a medical condition. But that's not a bad thing because I have a kidney disease and am okay with that. I mean, I'm not thrilled that I have it but I also understand that it's not the end of the world. And I can be completely pro-active about it. I try really really hard to do this, even though at times I just want to complain about having it to deal with it when in all actuality I am living my life to the fullest and it isn't really affecting me too much.

I just had a life revelation an hour or so ago so all these thoughts are extremely jumbled but very real. I'm not going to take the time to edit this because I want it to be honest and raw.

I think that I want to go to the Kidney Convention. I want to have enough guts to tell people about PKD this month in honor of National Kidney Month. I want to keep up with blogging. I want to be pro-active about my disease all the time. I want to help people and feel like I'm doing something again.

I'm going to try really hard. I would write more and try harder right now but the fact is that I'm really busy and should be doing my homework right now.

Monday, January 5, 2009

I fail at Updating

Hello!

I fail at updating my blog, obviously. I've been at school and haven't known what to write about kidneys lately.

BUT- I will be heading out to Colorado for my second hospital visit for the testing program. I'm missing the first few days of school but am still excited. I'm a bit nervous because I'll be out there without my Mom but I know that everything is going to be alright.

I promise I will keep you update from there. Afterall, what else is there to do in a hospital? :)

Friday, September 12, 2008

PKD WALK

Hey--

I realize this is a bit late on my part, but I've been a tad busy at school. :)

For those of you who don't know, the PKD Walk is next weekend and I hope that you're all planning on attending one near to you. If you go to the www.pkdcure.org website you can find all the information that you need pertaining to the walk itself. I love going every year because it really helps you to feel the whole PKD community. I can feel it in this Blog, I find that it helps me to continue pressing on at times when it gets hard and I feel alone with a disease. But I will assure you, there is nothing better than talking face to face with a bunch of people that have PKD or are affected by it in ways similar to you.

If you can't walk, and want to donate, feel free to do so. If you want to donate in my name, you can access my page at:
http://walk.pkdcure.org/goto/ldreyer

So. I will write more when I get some breathing time about adapting to college and Dad and all that good stuff.
I hope everyone's doing great!!!!

Wednesday, August 20, 2008

2nd Attempt

So I wrote this really great entry, and then it was deleted. My internet is sketchy, so I'm going to wait a bit before I write a whopper of an entry. Plus, I'm swamped with college stuff... I leave in 4 days!

I wanted to share a bit of an interview that I did with Lori when we went to visit her. It was for a contest at Butler, and I actually ended up winning the contest. We had to interview someone and get them to share their story, like in the book, LISTENING IS AN ACT OF LOVE. That was the book that all the incoming Freshman had to read, and there was a contest to go along with it. Who better to interview than the woman that saved my Dad's life and became a great friend of mine!?!?

Here is is:

Lydia Dreyer, 19, interview’s her friend and father’s kidney donor, Lori Brewer, 45
Recorded in Mulvane, KS


Lydia Dreyer: What do you tell people when they ask why you donated a kidney to someone who was not in your family?

Lori Brewer: It depends on who the person is and why they’re asking the question, and if I feel like they should get an answer. I tell them it’s because I felt very strongly that this person, your dad, Kevin Dreyer, needed to live. And there was something that I could do, so I did it. And it doesn’t matter whether it’s someone in my family, it doesn’t matter at all. Really. Is that bad?

Lydia: No. No. It was really good. Did that question come up when you were being evaluated by the psychiatrist to see if you qualified as a donor?

Lori: Yes, constantly. That was the big thing, you know, why do you want to do this for someone who isn’t a family member. But I really don’t understand why it’s such a big deal. It’s my kidney, I figure I should be able to give it to who ever I want and don’t have to see a psychiatrist.

Lydia: So what did you tell them when that question came up?

Lori: That it was really important for me to do this because Kevin wouldn’t live without it. He was a father of 3 daughters and I believe that the most important relationship that a girl can have is with her father. And that’s really the reason I did it. I felt like it’s for the family, for your mom, Indi, and it’s for you and your sisters. He needs to live, and if I have the power to do that then why wouldn’t I? To me it’s not even a question- I didn’t understand what the big deal was. Really. You three girls need that relationship and you don’t need to have a loss of that magnitude. You just don’t. So that was the main reason. Because of you guys. And plus he’s funny as hell. And he can answer any question! You know you ask him a question and he answers it. That’s impressive.

Lydia: I’ve heard there was a question that you asked him. Why was that question so important?

Lori: It was the way he answered it. It wasn’t the question. That wasn’t what impressed me, what impressed me was the way he answered. When I ask questions of people they usually answer simply, and then I have another and then it’s like I’m pulling out the answers. With Kevin, he answered that question from all sides and there were no more questions. And I can’t remember that happening too many times in my life. And that was impressive. You meet people all the time, and they just don’t make that big of an impression on me. But that wasn’t the case with your dad. This guy needs to stay around, he’s got things to say and do.

Lydia: Well I’m really glad you donated a kidney to him. It helped create life and friendships!

Lori: That’s true because I just knew Indi. And you guys met me when you were little toddlers, and you never would have known me or my family or come to Kansas.

Lydia: So what was your full relationship to my mom? You knew her when she was in college?

Lori: She was just finishing her undergraduate studies when I met her and we were waiting tables at the Olive Tree and just making our way in the world. It wasn’t very long. It was probably less than a year spent together and then it became the Christmas card thing. A card every Christmas, and then every once and a while we talked on the phone and it was like that until she came back for her reunion. When she came back we reconnected and started talking again. And then she came back here and stayed with me, and it began just spending more time with each other and together. And then she told me about Kevin and that you guys were looking for a kidney and I heard the story. And I was like, God, that’s terrible. All these people are going through the process and I couldn’t understand what the deal was. Two years and it keeps going on and on. So I came for her birthday party and thought, “What is the deal? Why can’t this happen?” And then I started thinking about it, and thought, this is just ridiculous. If none of these people can do it, then I’ll do it. It’s just time to get it done.

Lydia: She always talks about you saying that you just knew you would be the donor.

Lori: I knew it was going to be me.

Lydia: How did you know?

Lori: I’ve always known. I just knew. Like I know that 1+1 is 2 and I knew that I was going to donate that kidney.

Lydia: How did you talk to your family when you decided you would donate the kidney?

Lori: Well again, see that wasn’t the problem, deciding to donate the kidney. The problem I had and when I really spent time thinking about it was before I even told your mom that I was going to start the process because I knew once I started that I would be the one. I talked to the girls; I told them what I was going to do. I asked if they had any concerns, and they wanted to know if I was going to die and I told them probably not. I explained to them what I knew at that point, which wasn’t a whole lot.

Lydia: There were a lot of people that had to drop out, not by choice, but because they didn’t match, and I know that was really hard on them because they felt they were letting us down, which they weren’t—

Lori: Yeah. If you think you’re going to do it, and you want to help someone and you can’t, it was like the way your mom felt. She couldn’t donate because she didn’t match. The family members wanted to do it. I mean, how can you depend on someone else in the world that you don’t even know. The generosity of someone like that would be scary as hell. Again, it was just the upfront that was the hard part.

Lydia: I remember getting that call. I was in my sister, Natalie’s, room when we got the call and they came in and told us. We all just started screaming. The whole house erupted in screaming. OH MY GOD SHE’S A MATCH, SHE’S A MATCH. And then they wanted to do the surgery on Friday the 13th or something.

Lori: Yes. Yes. I mean, I’m really not superstitious or anything, but why bother? Let’s pick a different day. I mean really. It was really fast after that. And I felt strong enough to do it, it wasn’t that hard. I will admit that on the morning, after I checked in, and I saw your mom and dad come in. I was sitting in the chair, and I remember thinking, okay this is getting a lot more real. Okay. Here we go. You can start feeling, “Are you really just going to take this organ?” That was the only time that the emotions started getting rapid. And I told myself to relax, that this is what I’m doing. And this is why I’m doing it. And then I just said okay, let’s go.

Lydia: Do you remember anything before you went down before the surgery?

Lori: I remember them telling me to count backwards from ten. And that was about it. And then I remember when they were trying to move me from the operating table to the roller cart, I was awake, but I just didn’t open my eyes. They were lifting me up and I was like, do you want me to help you? And they freaked! “She’s awake!” And then they were said okay, so I lifted up my butt and scooted for them and they couldn’t believe it. They rolled me in the recovery room and I remember saying, I’m staying awake until I know Kevin’s okay. They told me before that they would tell me if the kidney worked. I could see the end of his bed in the recovery room and I could see his nurse. And I kept telling my nurse tell me about the kidney. Finally she said we have urine or something like that or the kidney is working and it was processing or whatever. And Boom. I just went out. And I remember them trying to wake me up, and I just said leave me alone. It was all fine, I could go to sleep, and that was it.

Lydia: It’s just an incredible thing to think about. I look at Dad and I have those moments. I’ll just look at him and think that’s not his kidney that’s keeping him alive. Seeing Dad that day, I mean, he looked different. His face looked better, his skin. He looked more alive. I didn’t realize how sick he was, which was weird, but I guess I just got so used to the gradual decline of his health. Then I went in to see you and you were just so happy. I could tell you were in a lot of pain but you were just fighting it or something. Oh My God. And when I see you two together and think about it. Wow. She is the reason that my Dad is still alive. With the PKD community, and the transplant people, everyone’s floored. They’re amazed. Always asking, you mean she’s not family? She’s not related to you? Oh is she a really good friend of Kevin’s?

Lori: I didn’t really know Kevin. Not really. I met him once when he was really young when you guys were toddlers, but I didn’t really know him. I knew of him. But once you know Indi, you just know her and love her. You know your mom, she’s just like that. It’s her. That was the conduit that caused this to happen.

Lydia: Did she ever directly ask you to donate?

Lori: No. They asked me that. There were a couple of things they were concerned about. They wanted to know how I got involved. Who asked who first. Whether you guys were paying me any money, and then they told me if I didn’t want to do it for any reason, just tell them and they would tell you I flunked. And I’m thinking, God this is weird. If I didn’t want to do it I wouldn’t be here.

Lydia: Have you felt anything different?

Lori: No. I feel exactly the same. And I think I always have felt exactly the same. I didn’t feel anything. That’s the whole thing about this kidney thing that’s so weird. I mean, you can live with just one! You don’t need them both.

Lydia: I think it’s just the idea of getting something taken out of you.

Lori: It’s a little bit weird. Oh. I don’t have anything to do this summer, how about you take an organ? Yeah. It’s not like you go into it thinking that. If you stop and think about it that way, no one is going to do it. My kidney in my body was like, 94% both of them, but separate its doing like 128%. It’s like 64 or 66% in me and its something like that for him too. I remember I talked to my kidney doctor about that. I’m involved in math and statistics, and that is amazing. It’s almost like everybody should do this. Look at how productive we can be. If two kidneys together are 90%, separate them and look at how productive we can be! You get 120%! Everybody should do it! It’s amazing!

Lydia: I admit, this whole situation with you and my Dad just gives me hope for the future. Your kidney was amazing. His health levels are stable and he feels a lot better and is a lot better. And it’s because of you, because of the choice you made to donate.

Lori: Everybody says they want to make a difference in the world. Well do it. Don’t talk about it. Do it. And that’s how you do it. If somebody needs your help you give it to them. You don’t just sit there and say oh my god I’m scared. No. You do it. To me this is like a big story now. Now I get to see what happens, and I think it will be fun. I get to see how all of you grow up and what you will be.

July 6, 2008