Until There's a Cure...

Stranger from Afar

2011-02-16T09:42:00.001-08:00

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.

2009-10-27T07:29:00.001-07:00

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. :)

She's Baaaaaack

2009-06-25T06:43:00.001-07:00

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!

Whoops

2009-03-22T20:53:00.001-07:00

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.

I fail at Updating

2009-01-05T21:22:00.000-08:00

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? :)

PKD WALK

2008-09-12T07:03:00.000-07:00

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!!!!

2nd Attempt

2008-08-20T11:46:00.000-07:00

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

2008-07-02T15:43:00.000-07:00

So I just had the pleasure of reading an incredible book. And I mean an INCREDIBLE book! It’s called Driving Sideways and it’s by Jess Riley. It’s about this girl in her 20’s who had PKD and has recently undergone a transplant. The transplant was successful (and sounded familiar to me) so she decides to go on a road trip where she encounters many hilarious and wonderful people/things. It was an incredible book because it read well and was funny (I laughed out loud on the plane and had people staring at me like I was a fool), but it was even more incredible because I connected with it. It was so nice to read a book about someone with PKD because it showed that I am not alone in the way that I feel. I know that I’m not because I know other people with the same problems, but it’s pretty neat to have a fiction book written about it.
When I was reading it, the main character said and felt a lot of the things and ways that I feel myself. She even said something about not having kids because she didn’t want to pass on the PKD to them. I mean, I feel that way right now and some people just don’t seem to understand. It was a wonderful experience and I’ve been telling all my friends, with or without PKD, to read it because it’s just that good. She connected with her readers in a way that I haven’t connected with other books that I’ve read.

I’m currently in Kansas at Lori’s, Dad’s kidney donor, house. We came down here for a mini reunion because we haven’t seen each other in a while. The 26th was the official 1 year anniversary of the transplant, and Dad is doing great! He was driving in the car right around the time that he was in a hospital bed a year ago. HE went to see the doctor that morning and he was taken off of one of his medicines, the antibiotic, because he’s been so healthy. He said that he doctor was very impressed with him because he maintains his Creatinine levels. Dad’s really good about drinking enough water all the time. The tip that the nutritionist gave him was to take his body weight, divide it by two, and then drink that amount in ounces. Example: you weigh 150 lbs, you drink 75 ounces a day. He was telling my great aunt the other day (the one with PKD) that water is a really good thing to constantly drink.

Anyhoo- I’m being a bit anti-social and not joining in with Lori and her family and my family too, so I’m going to post this and then join in on the festivities. I hope everyone is well, and it has been great to hear from some of you guys! Take care- drink your water and read Driving Sideways!

(That sounded a bit like an advertisement. My bad. I just want everyone else to read it because I loved it so much and it made me feel so much better and not alone)

Summer!

2008-06-15T15:05:00.000-07:00

I am currently deep in the mountains of North Carolina, staying with my Grandmother. (Donna Jean, my father's mom). I love North Carolina, especially the mountains. I find it one of the most relaxing places to be because my surroundings are superb, and the company is even better.

Last night was a bit of a rough night for me because it was my first night staying in the house since my Grandpa passed away. He's an incredible soul and was an amazing person. The house seems quite empty at times, but I am still always thankful for the family that surrounds me. He died almost 5 years ago, with one of the reasons "funky kidneys". He appeared almost pregnant, or with a larger belly later in life, so it is presumed that it was PKD.

Speaking of which...

Dad and I had our regular checkups with the kidney doctor a week or so ago. That started with me getting my blood drawn, which sucked, as it always does. You know, they should really hurry up on this whole 'finding a cure' business, because my fear/hate/loathing of needles hasn't seemed to get any better. It was better than last time however, when I cried at the lab. I didn't really cry because of the needle or blood draw, but more so because of the reason behind the blood draw. (NOTE: I know we're doing our best in the whole 'finding a cure' business. Don't think that I'm belittling the quest)

Anyrate...

Believe it or not, but I still have PKD. Shocker, eh? Part of me wishes I could just go into the appointments for the yearly check-ups and be told that I am PKD free, but I know that isn't possible. Dad, on the other hand, is! And I couldn't be happier for him! He set up an appointment with a dermatologist because he has had these two spots on his nose that continue to scab over, yet never go away. (I think that he's picking at them, but he says that's not the case... you can never tell with him though. Ha Ha.) He also has to get a bone density test which I'm sure won't be too pleasant, but apparently it is procedure to get that test and go to the dermatologist and the one year point.

Yep! The 26th of this month will mark the anniversary of my Dad's second chance at life. The anniversary of the precious gift that Lori gave my Dad, without a second thought. (Or at least a third). We are actually embarking on a road trip in the next few weeks to travel to Kansas and celebrate with Lori. I'm excited for the reunion and the celebration of a shared life.

I haven't heard from anyone in a while. How's the PKD going for everyone else? How's life in general? I could always use a good story or a new/old friend!

Happy Trails!

Suprise!

2008-04-21T13:47:00.000-07:00

Everything’s changing. It’s the last quarter of my senior year and I’ve never felt so sure and unsure of my life as I do now... but I love it.

I haven’t written a Blog entry in a while because I haven’t really had anything to say that directly related to having a kidney disease. But then I realized that everything indirectly relates to PKD, and my life is interesting whether I have a disease or not.

I’ve recently coined the phrase, “I’m Lydia Dreyer. I do what I want.” It pretty much sums me up in a nutshell. I guess that isn’t so recent, but lately I’ve been saying it a lot more and living it. I went down to Butler and registered for my classes and I am oh so excited! It finally feels like everything is falling into place with school and life in general... to a certain extent.

The friendships are changing all over the place and that leaves me confused and exhilarated, but I love it. I’ve made a lot of new friends that I wish I would have met earlier in the year rather that when it’s ending, but I’m happy that they’re there nonetheless. I’ve filled out a lot of scholarship forms and have been asked a lot of similar questions, and am learning the expected answers... but I haven’t really been giving them. :)

The national fundraising letter went out that my dad and I co-wrote this year. It was neat; the foundation sent us a copy of the letter and a few sheets of our own without the letter and just the border with our picture. I love getting those little things from the PKD foundation that just remind me that I’m not the only one dealing with this and that there’s other people out there.

When I meet new people and establish friendships, there’s always the initial shock when I mention that I have a kidney disease. It’s usually some off hand joke that I make assuring them that they can drink after me because I don’t have any diseases. Then I laugh and am usually given a look if they don’t know about my pre-existing condition. (Ha Ha. Get it? They can share a drink with me because I don’t have any disease that they could catch--but I do have PKD, aka a disease)

PKD has become a part of me. A part of my life and a huge (semi-literally) part of my body. I still go through those times when I just get so pissed that I have it at all. I had one of those moments the other day. I was in the car on the way home from school, venting about something or another at the top of my lungs to a friend. It was a funny scene because I would yell and scream, then apologize about venting so much, and then do it some more, and then apologize and so on. My friend pointed out that I never really do this, so it was okay and whatnot. After that I decided to make the vent worth it and I screamed a few swear words followed by I hate my kidneys. I hate my life. (Which I don’t, it’s just fun to yell)
Don’t worry; I don’t hate my life or my kidneys. I get pretty pissed at both of those things, but I don’t hate them. PKD was a gift that I was given. Duh. It’s a gift to everyone else that has it. We can change the world, change the norm. Who says that kidney diseases aren’t cool? Our movement is helping to fight against genetic discrimination. Our stories inspire others to carry on in the rough times. We can be in medical testing programs, which is pretty sweet. PKD isn’t just a disease, it’s a community, it’s a lifestyle, and it’s a chance to make a difference in the world. Some gifts aren’t pretty at first, but it’s what you make of it that really counts. I’m being pro-active. And I’m living my life. I’m Lydia Dreyer. I do what I want.

Creative Writing Assignment

2008-03-11T15:15:00.000-07:00

So recently in my Creative Writing class we were given the assignment to write a ballad. I didn't like it at first, becuase I'm not much of a ballad writer, but I did my best. We were supposed to write about a real and legendary event, so I decided to write about Lori giving my Dad a kidney. I mean, it is quite legendary! And it also had to rhyme. And I find rhyming poems awkward... but eh, it turned out better than I thought. :)

“Lori”

Kevin was a man with a healthy soul
A sound mind and a heart of gold
The only thing wrong was a kidney disease
One that was invasive and did as it pleased

His function was elastic,
Never went above fifteen
Yet he maintained a hopeful heart
Acted like a healthy human being

The search for a donor was hard and long
Filled with pain and rejection; it was hard to stay strong
Praying every few hours for an angel to be found
With the donation of a kidney to keep Kevin around

His family felt hopeless
When their blood types didn’t match
Everyone wanted to help him
To throw him a rope to catch

Friends and family from near and far
Stepped up to the challenge, but weren’t up to par
Until Lori Brewer standing 6 feet tall
Came to visit and surprised them all

The search for a donor was hard and long
Filled with pain and rejection; it was hard to stay strong
Praying every few hours for an angel to be found
With the donation of a kidney to keep Kevin around

She swore up and down that the donor’d be her
That she’d be that angel, the one with a cure
So she went through the tests with eager expectations
While Kevin waited for the results, using all his patience

She passed the first round
Than the second and third
But it wasn’t until the fourth test
When a miracle occurred

The search for a donor was hard and long
Filled with pain and rejection; it was hard to stay strong
Praying every few hours for an angel to be found
With the donation of a kidney to keep Kevin around

She received the call on and ordinary day
Her kidney was a match; Kevin would be okay
Tears of joy erupted from his eyes
Someone finally matched, after all those tries

An angel was found in an unlikely place
A friend of his wife; yet not a familiar face
She lived in Kansas, 700 miles away
Yet she came to Indiana and saved the day

The search for a donor was hard and long
Filled with pain and rejection; it was hard to stay strong
Praying every few hours for an angel to be found
With the donation of a kidney to keep Kevin around

A date was set and a place was found
Lori stood tall in her hospital gown
She lay on the table and showed no fear
While everyone waited for good news to hear

The surgery was long
And the pain was great
But the transplant was successful
They had defied an unhappy fate

The search for a donor was hard and long
Filled with pain and rejection; it was hard to stay strong
Praying every few hours for an angel to be found
With the donation of a kidney to keep Kevin around

Groggily Lori opened her eyes
Not knowing who in the next bed lies
It was Kevin sleeping and recovering well
She had successfully provided the good news to tell

Kevin was cured of an invasive disease
No longer would it harm him and do as it pleased
And Lori was a hero, an example to all
And angel sent from heaven to answer a call

The search for a donor was hard and long
Filled with pain and rejection; it was hard to stay strong
His prayers had been answered, an angel was found
Lori’s kidney was the reason Kevin was still around

And the Award for the Abandoned Blog goes to....

2008-02-20T12:32:00.000-08:00

Hello All!

It's been far too long since I've written one of these, and I'm sorry! I've been swamped with life and school and whatnot. I got accepted into the Butler Theatre Program, so I will defineltely be there next year!

Through this blog I had the great experience of connecting with someone my age who has PKD. Her name is Kristen and she's 20. It was great to talk to her and share our experiences. It wasn't face to face or anything, but it was over the phone and that was nice. She goes to IUPUI and will be around when I'm at Butler next year.

She mentioned insurance rates, and I realized that I had forgotten about those completely. It stinks that PKD people, and others with pre-existing medical conditions have higher rates. I did that thing for PKD Advocacy when you called all the people that were voting on the bill. I hope that works... and SOON!

Dad is doing quite well. He had some trouble sleeping after the surgery, and was still in a lot of pain. But he's his old self again, doing cartwheels and back handsprings.
Kidding.
He never did that.
However, he did trim his hair. And I'm still not too happy about that, but he said it was thinning out because of the meds and he felt like he was lying to himself keeping it so long.

Life is good. And I hope all of you are as well.

OH! Today I heard the rumor that tea is bad for your kidneys.
Is this true?
I heard green tea and tea with ice cream.
Being a dedicated tea drinker myself, I would really like to get to the bottom of this.
So let me know what you know!

Answering a few questions

2008-01-02T13:31:00.000-08:00

Hi this is Lydia's dad, Kevin. She has been telling me that a few questions have come up about this second surgery and asked if I would be able to answer, which of course I am happy to do. We have all found it interesting how this little community has grown from just friends at first to a much wider circle that reaches into the PKD community. I have found your responses uplifting at times and it has helped Lydia understand that she is not in this on her own.

As I understand it the question of if there needs to be a second operation is not a cut and dry one. It depends on the health of the recipient, the health of the transplant and the progression of the disease. In fact we did not determine that we would be removing any kidneys at all until the day before the transplant.

I had started to find it hard to eat much, if anything, and had a constant feeling of fullness. This was coupled with internal pressure that would wake me up at night and force me to change sleep positions and unexplained bowel problems none of which really met the criteria that I had been given a year earlier of "inability to eat" and "pain." So I met with Dr. Goggins and we talked about how I was feeling, after chatting he asked to check my abdomen and basically squeezed me in two positions and said; absolutely one of them is coming out. I had been feeling more issues on the right side so we decided the right would go, unless the donor organ dictated other wise.

As you have probably read on here before we did take the right native kidney and performed a right side to right side transplant, an unusual procedure in number of ways. The new kidney sits between a native kidney location and the usual transplant location, this was only possible because we had removed the native kidney. The connection was a ureter to ureter connection as opposed to creating a new direct connection from the kidney to the bladder.

The first indication that we would need to begin to think about a second nephrectomy came within days of the transplant. Dr. Goggins felt that the number and kind of cysts on the organ he removed indicated it would be wise to plan to remove the other one. When I asked when he said anytime between 3 months on up to a year but no longer. We started talking with my donor Lori and thought it would make a great excuse for a one-year anniversary get together. While she had managed to secure images from her own surgery she really wanted to see about getting permission to watch this one.

The first shift in calendar came around the 8th week post transplant. We had been dealing with stubborn, unexplained white blood cells in my urine and a continued presence of protein. Both transplant surgeons were convinced that the source had been narrowed down to the native kidney, but I was already back to teaching, which made the earliest opportunity the end of the semester.

Then came the process of connecting with the robotic surgeon who would perform the procedure, arranging for leave time from work, and figuring out when during the holiday season we could schedule this. There were more than a few times when I was not convinced everything would fall into place in time. I was also not fully convinced that I needed to have the native kidney removed.

In the three to four weeks before surgery the issues of pressure, eating, or not and bowel problems began to reappear. By the time we met for our pre-surgical consult and I got to see my abdominal MRI I was convinced this was the right thing to do.

Since starting this journey I have spoken with PKD patients that had both kidneys removed without a transplant option, patients who have followed the pattern I have and a few who still have both native kidneys and a transplant. Clearly there is no one answer and it is important to listen not just to your doctors but to your own body. Understand what kinds of stress affect you the most; can you wait and see if a problem pops up or would you rather deal with an impactful surgery and know the problem is gone for good.

It was never what I felt was an easy decision but it has become very clear that it was the right decision. Despite the pain (unexpectedly high,) the weakness, the sensitivity to cold (bad thing for late December,) and my ability to forget how to be a good patient, I know it was the right idea. But I am now able to fully focus forward and deal with the health of the transplanted organ and not continue to wonder about the PKD. I still have really good blood chemistry and have every reason to believe that I will return to the same level of activity, and more, quickly.

This is probably more information than you were looking for and I hope you have not been too bored by it all. I really appreciate the support both Lydia and I have found through all of you, so in a way I feel like this a small way I can give back, by sharing my story and my experience.

Kevin

Hopefully These Links Work!

2008-01-02T11:29:00.000-08:00

FIRST OF ALL:
Someone left a comment that they wanted to see the kidney pictures, and they left me their e-mail, but for some reason when I approved the comment, it was deleted. So whoever that was I'm extremely sorry, feel free to leave another comment with your e-mail and I can get back to you directly.

http://aycu23.webshots.com/image/38022/2005152560646236646_rs.jpg

http://aycu05.webshots.com/image/39324/2005130633337778706_rs.jpg

So if those links above don't work, then I can post the actual pictures on the blog. I'm just a bit hesitant to do this because I know that not everyone wants to sit down and look at some kidneys. ;)

Currently, my Dad is sleeping on the chair. He had a big day today... we visited Butler, making that visit his first official trip from the hotel after the surgery. We made a pitstop at the hospital on the way home because Dad's incisions are bruising quite a bit, and one of them had a little bubble of blood on the top layer. Confusing, I know, but I can't think of a better way to put it. Dr. Goggins (transplant surgeon) checked it out, and said that it was fine and we didn't need to worry.

When Dad is more awake, I will address Bob's question about why the kidney was removed. I want to be able to give technical answers that are correct. :)

But I also know that I needed to update this for the people that are wondering his status.

Happy New Year!

WARNING: Contains Link to Nasty Kidney :)

2007-12-30T19:22:00.000-08:00

Hello All-

Things are going quite well in the Dreyer Family Hotel Suite. Or rather, Hotel Room. The room has begun to feel a bit smaller as the time spent in in lengthens. Dad got a nice break today because Natalie and I went to see a movie, while Wilhe and Mom tackled the Indiana State Museum. He said that he had a 3 hour nap and spent some time reading the paper.

Currently he is watching The Sound of Music while Mom washes his hair. His lovely hair, which is really starting to thin due to the medications. It's going to be a hard thing to lose, but as I was advised earlier, its not the hair that makes the man. My Dad makes himself. :)

He's been wearing the t-shirt that I made him for Christmas all around the hotel room. It says I HEART MY KIDNEY. I smile everytime I see it and think of the lovely gift that is living inside him.

We all had a lovely chat with Lori (the donor) this morning. She is such an incredible woman, and continues to suprise me every time I speak with her. Her outlook on life is superb, especially the hope that she carries with her. She really is a superhero, so I can understand why my mother wants to make a comic strip. She talked about how this Blog helps people to understand better, and maybe even make the decision to donate.

And, as I promised. Here are the links to the two pictures that I took of Dad's kidneys. They're pretty nasty. Watch out. :) You have to copy the link, and then paste it in your address place thingie. (Not too sure how to explain that in words, obviously)

http://s28.photobucket.com/albums/c235/ATasteofDisaster/?action=view¤t=0106800000a.jpg

http://s28.photobucket.com/albums/c235/ATasteofDisaster/?action=view¤t=0106800000.jpg

So far the medical-technical stuff with Dad is still good. His creatinine levels went up after the surgery, but that is expected, so we weren't too worried. He's just a big ball of healthiness. Kinda.
Still in a lot of pain, but still my hero!

Take Care! And Happy New Year to everyone!

RELEASED!

2007-12-29T15:27:00.000-08:00

Dad was released from the hospital. Currently he is on the lazy-boy in the hotel room.

I'll update more later!

2007-12-28T14:50:00.000-08:00

I planned to write an entry the soonest that I got a chance, but the day has been a bit busy. I planned on it being a happy entry, filled with jokes and such. But, I really can't do that right now. Don't freak out, Dad's okay. He's in a lot of pain, but he's okay.

Today someone from my hometown suffered a huge loss. His parents were involved in a plane crash, and his mother died and his father is in critical condition, suffering from burn injuries. It's even more horrible because he lost his sister to a plane crash last year. I don't know him well at all, but he's a friend of my sister's.
I started praying the minute that I found out. I had to write it out because my mind was moving so fast. I jumped from praying for his family to praying for my Dad. And I'm sure that his family would appreciate some prayers of your's as well.

Dad went on a walk earlier today, and during that walk his pain level as about an 8. That's pretty bad, because my Dad doesn't really talk about pain too much, so even a 3 in his mind could be a 5 or 6 in my mind. I'm extremely proud of him.

Today is his wedding anniversary. They've been married 22 years. I think this is one of the most interesting anniversary's that he's had so far.

But I'm happy. And thankful for the successful surgery. I only wish that Dad would feel better and quit hurting so much, I hate seeing him like this.

BLOG ENTRY FROM MAMA

2007-12-27T12:27:00.000-08:00

Holiday greetings from Kev's hospital bed in Indianapolis. THe left side nephrectomy (removal of nasty PKD Kidney!) was yesterday 12/26 from 12:30-5:00 with prep at 11:00AM and recovery until 7PM. The team was unable to remove it totally laproscopically as planned so he has another vertical incision in addition to three "stab" wounds. His pain is much more intense than the transplant and he hasn't been able to rest or sleep much. Lydia and I asked about seeing the diseased kidney and sure enough- it was VERY gross, but fascinating. The best thing is that it no longer lurks in Kev's body and PKD is no more. YIPPEE! Now we should all pray for a cure in hope that Lydia will never have to go through all of this. Again, we are eternally grateful to Lori Brewer for her amazing, loving, healthy gift to our lives.

By the way- I am working on creating a super-hero gal- TWO STORY LORI who is adorned with a bean shaped beret and a large kidney shaped shield. Out of her back, the remaining kidney radiates sparks of light to attract potential donors and ward off PKD and other renal problems. I want to be her humble sidekick something like OGEG- Old Green Earth Girl or whatever, I am a work in progress to say the least. I am lousy with graphics so I am looking for some artistic talent to help get this show on the road. I tried some sketches at a workshop at the library. It was for the kids. I went anyway. I tried extending the scale to accomodate and accentuate her over-average height and power. I drew her in an asymmetrical skirt and that's about as far as I got before I realized I should not be doing that part. I would like to help educate and encourage through real life causes and stories. If anybody is interested in contributing in anyway please contact Short Story Lydia. Thanks.

Kev continues to improve a bit at a time so we plan to stick around here for awhile.

Take good care all,

Indi Mama Dieckgrafe- Dreyer

Successful Surgery!

2007-12-26T14:01:00.000-08:00

The time is 5:00 and Dad is out of surgery! We met with the surgeon a few minutes ago and Mom and I got to see the kidney that was removed! It was quite the experience, to say the least. I took a picture of it on my phone... and I'm depating posting it on this site. Ye with weak stomachs, beware!

The surgery was about 3 and a half hours long. They didn't have to disect the kidney like we originally thought, but instead they made a larger incision than planned and took the kidney out in one piece. It was massive and gross, to say the least. We're just happy that it's gone!

He's still in "limbo", stuck between the operating room and the recovery room. We're anxiously awaiting the room number so we can see him when he comes out. I think I may suprise him with that picture of his kidney....

Christmas Eve...

2007-12-24T10:26:00.000-08:00

First of all Happy Holidays to all! Things are bustling at the Dreyer household. Excitement and anxiousness fills the air.

I got accepted into Butler a few days ago, so I am extremely excited about that. I'm on break at school and I think my finals went really well!

We are celebrating Christmas today so we can have enough time to pack the car/ our bags tomorrow. Dad's surgery is still set for the 26th, but the time has been moved later. First, he had to check into the hospital at 5 in the morning, but now he has to check in at 11 and the surgery is set for 1. We are really excited for the procedure, but of course a little bit nervous of course.
Natalie is set to leave for Morocco January 3, and has started taking her vaccines. She's started the one for typhoid, and we are hoping that she will still be allowed to be around Dad because it's a live virus. He asked the anesthesiologist today when they called to check in and they said it shouldn't be a problem.

So basically we're ready. Just not packed or anything, but I mean, that's the way that we do it. :)

So keep us in your prayers and thoughts, and we will keep everyone in ours as well!

:)

2007-12-13T17:51:00.001-08:00

I think I have finally started crawling out of my black hole. The hole where I felt sorry for myself and my father and didn't handle things the best way that I could.

The world is a beautiful place my friends. The snow is freezing all the grass and giving my car the flu... but it is all beautiful.

Everything. You. Me. Kidneys. Food. Heaters. Etc.

Yeah. I'm doing great. And I'm ready do be completely pro-active about PKD, so if I come knocking on your door asking for support and donations, you better watch out! Lydia is coming to town!

I really don't know what's come over me. Maybe it's the holiday season? I'm in show choir at school, and we've been performing all over the place, so maybe those songs have gotten into my blood stream. And the holiday cheer is taking me over? Or maybe it's God, and my family and friends, and the community here.

Things are stressful every day. For example, Butler mails out its acceptance letters December 20. I'm freaking out, to say the least. I have no money, and have been so busy with the play at school/ show choir/ finals that I haven't been able to work. Christmas presents are going to be scarce, but quite thoughtful. Because I have a lot of things to say to those around me... nice things of course!

We're all waiting for the surgery, and I know it is constantly in the back of our minds. Mom and Dad will leave for Indy on the 25th and then the girls will follow behind. Honestly? I'm excited. I probably couldn't have said that a few weeks ago, but I really truly am. My Dad is about to be given another way to heal himself. Another way to relieve discomfort.

I've been praying a lot. Praying for safety and for a sweep of calm to come over me. And I've been praying for those that aren't are fortunate as my family and me. Who are still out there waiting for the gift of life, and I'm also praying for the donors out there, or the potential donors that have yet to recieve their call. A call quite similar to the one that Lori recieved a year or so ago.

Crazy isn't it?
Sometimes when I think about the transplant, it seems like a dream. I mean, did that really happen? Did they really put Lori's kidney in my Dad's body? And wait- it actually worked! You can do that?
Life is crazy.

But you know what, I wouldn't have it any other way!!!!

The blog will be up and running during the surgery, just like old times. So get ready to read. :)

HAPPY TRAILS!

A Penny For Your Thoughts

2007-11-21T11:44:00.000-08:00

There's something that can be said about the general person's behavior. We're actually quite tame. I mean, you go to a movie or a performance of some kind and generally no one radomly yells or shouts loud obscenities. Have you ever thought about what would happen if you did? I mean honestly nothing is stopping a person from behaving in that maner. Yeah its rude and everything, but who's stopping you?
Generally not everyone speaks their mind. Someone can say the most ridiculous comment and you want to tell them how dumb they are and rip apart their life; but you don't. Why not? What's stopping you?
Everyone is holding something back. Maybe its a scream or maybe its a comment or maybe its a tear or a cry of pain. Maybe they don't even know what they're holding back because they're holding it back from themselves. I like to think that I'm an intelligent person and that I generally seem to know what I'm talking about. I think I've hit the nail on the head here...

Lately I've been that person. Holding back that scream or that particular comment. I am so incredibly stressed out. And I'm even more stressed out by the people who don't appreciate what they've got. Life. Freedom. Family. Happiness.
My Dad is getting his kidney (the leftover diseased one) removed December 27th. At this point, this is a tentative date, but we're pretty positive that that's when its going to be. My parents wedding anniversary is the next day, the 28th. New years is right around the corner. You could safely say that our Holiday season may be quite busy.
Don't get me wrong, I'm so incredibly happy and thankful the surgery is happening, I can't even begin to express how thankful I am for the doctors and the chances that my dad has been given. I guess the date just isn't our first choice. Their wedding anniversary in the hospital? Sheesh....
It'll be okay though. We'll all be together and we'll make it work. I'm just scared I guess. I'm not looking forward to the stress of another surgery.
I don't know how my dad does it, stay strong, I mean. He balances it all with incredible strength. My only wish is that I could become atleast half the person that my father is now. I wish that those of you who are reading this could meet him. He'd change your life, or atleast touch it significantly...

Thanks again for the stories and words of encouragement, guys. Have a good Thanksgiving tomorrow, make sure to eat lots. I'm pretty excited, because this is the first Thanksgiving since the transplant, and my Dad won't have to watch his potassium intake. (That means he can eat those mashed potatoes!)

I've been mentally making a list of things that I'm thankful.
One of the things at the top is Lori. I guess I could call that organ donations in general.
Then there's family and friends.
And warmth and shelter.
And love and life.
And everything nice... :)
Then you can add the PKD Community who has made this burden that we are all bearing a little bit lighter.
And of course the doctors that save lives every day.
And the others that put smiles on faces that seem a bit empty.

Ugh. I need to work on my list some more I think. :) What's yours like?

Moral of the story? I'm okay. We're okay. Dad's okay. And he's going to be even better after the surgery.
And me? I'll continue to abide by society's rules...to a certain extent anyway... :)

HAPPY HOLIDAYS AND STUFF!

Few Days?

2007-11-12T07:36:00.000-08:00

Eh. I'm blushing a bit while I'm writing this, because I know I have indeed been behind. I'm sorry!

Don't think that I'm ignoring this blog, or any of you. It's been great to read all those comments from everyone. It's still nice to know that I'm not alone.

I'm currently in school while I'm writing this, and breaking the rules a little bit. :) I'll update when I get home. I'm not going to promise, but I'll try my best!

2007-10-28T17:50:00.000-07:00

Hello Strangers!

Suprise! I actually updated my blog! :)

I am really sorry that I haven't been as regular in my writings. I've thought about writing numerous times, and have even gone as far to write one out on paper, but obviously, things fell through. I've been really stressed with the whole college application process, etc. Things have been pretty smooth lately in the kidney department. I've gotten pretty discouraged lately, and I think that's one of the reasons that I haven't been writing as much.
Because of writing the blog, and people finding out about my "position" in the "Magical World of PKD", I feel bad when I get in those discouraging moods. I want people to read my blog and feel happy and hopeful, not depressed by the way that I'm feeling at that given moment.
I have just basically been discouraged by the incurable part of PKD. I always assumed that a transplant would be the ultimite cure for PKD, but I am slowly learning that its not really. My dad's daily life is still different that it used to be and I know that I will come to that point eventually. He still has to take those pills twice a day, and has to be careful about some health issues. When he had that cold, I think that some things just clicked for me. The difference in our lifestlyes. The fear I get when any of my friends get a common cold; praying that I won't get it and then eventually pass it on to my dad.
I'm not going to lie, I've been pretty down lately when it comes to the kidney department. I wrote this essay a while ago for a contest, it could be better, but it was what I wrote at the time... and I'm going to share it with you guys.

Finding hope during the rough parts of life can be extremely hard. It’s difficult to look forward to a new day when you know that the new days won’t shine as much as they used to. I always heard stories about people finding hope through their diseases but for a while I never understood how it could be done. I was oblivious to the reality of diseases, to the reality of finding hope when everything else is working against you. When I was about twelve years old, I decided that diseases existed only in stories and would always be that way for me.
A few years after that my Dad was diagnosed with polycystic kidney disease (PKD), an incurable disease that causes the kidneys to fail. I took the news of the diagnosis badly and gradually became paranoid, hopeless and angry. Instead of being hopeful for a better outcome, I was too fixated on the idea of the disease in the end.
I spent hours online researching PKD, because I was so determined to learn as much about the disease as possible. I couldn’t stop picturing all the cysts covering the inside and outside of my Dad’s kidneys, suffocating them, and turning them into a foreign object. Even though I was so obsessed with PKD, it never became a reality, and was still another disease that was only found in stories.
PKD finally became a reality for me on Father’s Day in 2007, when I was told I had inherited the disease as well. They detected PKD after an accident that resulted in the bursting of a cyst. Normally people don’t find out until they’re in there thirties or forties, so me finding it out when I was fourteen was a weird. I took the news negatively at first, using all my time to feel sorry for myself, rather that see what I can do about my kidneys.
When I found the website, www.pkdcure.org, things started to change. At the website I could read stories of hope from people who were going through the exact thing as me. I read about the hopes to find a cure, and that’s when I stumbled upon the walk that raises the money that funds medicinal testing programs. I went to the walk at found my PKD family, who helped me see the hope in the disease we all shared. I started to channel my energy towards finding a cure, rather than being negative. A few months later I signed up for one of those medicinal testing programs that would be starting in a few years. All of my energy was turned into hope, which then turned into the goal of finding a cure, and my first big step was this testing program.
While all this was happening my Dad’s function was gradually decreasing. He was put on the transplant list we started the search for a donor. The process was long and hard, and very taxing on all of us. Eventually our angel, Lori, pulled through and tested positive as a match. The transplant was successful and gave back all the hope that had ever been lost.
A month after that I went to Colorado and started the testing program. It’s only been two months since the transplant, but in those two months my hope has grown larger than it’s ever been. My Dad’s doing great and I’m being as pro-active about PKD as possible. I’m spreading our story and hope to as many people I can.
Finally I understood those stories about finding hope through a disease. It wasn’t as hard as I thought it would be to find hope in that situation once I realized that hope only works for you if you work for it. I understand now that there is no reason to lose hope when there are so many options out there. We come closer and closer to our common goal of a cure every day, and that thought alone helps me find my hope. I know that no matter where my health is later on as the disease progresses, my hope will never leave me. I will always have my hope for a positive ending, and my goal to find a cure for polycystic kidney disease.

I've been reading that essay over and over again, trying to instill some more hope in me. I know this is just a phase that I'm going through, and that I don't have to be positive all the time... but I can't help feeling guilty. So I think that may be a big reason why you haven't heard from me in awhile...

This has been a long entry... so I'll update in a few days with some new stuff. ( I promise I will this time!)

Lydia

Long and Winding Road

2007-09-23T17:41:00.000-07:00

So first of all. The walk was amazing. I actually meant to post something when I got home, but my computer decided to crap out on me. :(

We got to talk with a lot of people, and I (with the help of a lot of amazing people) raised about/possibly over $2,000! Donations are still coming in, and I have about 5 more checks to mail in. The support system has been amazing. It just reminds you how many people are out there that genuinely care. Dad compared it to getting all the get well soon cards during the time of the transplant. He didn't completely understand how many people were there for him, and then they all came flooding in as reminder, keeping his spirits up.

I'm really using the fundraising/walk experience to find hope. Things are getting a tad more stressful in my daily life, and I'm realizing a lot of things.

Dad has a cold, and he's had it for a few days. With the meds, he can't fight it as fast, so something that would have taken 2-3 days to get over can take up to 10, if not more. That's hard to watch. It's just another reminder that it doesn't leave you. The kidney may be gone, but his life will still be completely different.

I have a lot to say, but I'm in that "tornado frame of mind". All my thoughts are spinning around, and I am having trouble catching any.

:-D

2007-09-12T14:22:00.000-07:00

If I could make that smiley face any bigger, I would.

Thank you to everyone out there that has commented on my last post. Im sorry that it wasn't as upbeat as normal, but like I said, we all have our ups and downs...

Today my hometown newspaper put out an article about me, you can read it at http://www.southbendtribune.com/apps/pbcs.dll/article?AID=/20070912/News04/709120301/1051/News04

In it, they talked about my goal for raising money, and a the briefing of my dad and my story. I am extremely proud to say that my raised funds have now reached $600, and there are still checks being mailed.

Wow. That means SO much to me. Some of the people I don't even know. A lot of my dad's co-workers donated money, some of them that I don't even know all too well. Today in school I had teachers giving me words of encouragement, and my smile started to shine a little bit brighter.

I can't wait for the walk. I can't wait to see all of my "extended family" and share stories. I swear, reading the comments that a lot of you put on this blog just help me keep going. The words of encouragement, the words of thanks. Im sitting at my table, and every so often letting out those excited/frusterated grunts because I can't explain all that I'm feeling. I want to meet all of you individually, sit down over a cuppa joe, and just talk. I am so thankful for PKDCURE.org for giving me this opportunity to be connected. I don't think that there is anything I could want more...

Dad goes to Indianapolis tomorrow for the routine tests, and I have to muster up some guts to go get some blood drawn for the study. I really do hate getting blood drawn....

A little bit of discouragement is in the air....

2007-09-04T13:00:00.000-07:00

I think that having a kidney disease has completely changed the way that I look at things, more specifically life. I’m really trying to live for me, doing what I want to, because I want to. Don’t get me wrong, I’m not living life in the moment because I’m afraid I’m going to drop dead, it’s more because I really want to appreciate life.
This summer I grew up a lot. I experienced my father’s dying organ, but I also experienced the life of another. I experienced love and I obtained an amazing support system.
Now, I’m back in school, and I’m on yet another ‘kidney mission’, and I’m waiting for all that support to kick back in again. I think it’s hard for my friends that weren’t directly involved with me during the transplant, because they will never understand what happened, unless it happens to them.
It’s hard raising money, and spreading the word. I hate asking for money, and I guess I almost expected that everyone would support me right away. With words of encouragement, or donations, or even the offer to walk alongside me. Of course I have gotten a few of those, and I am so incredibly thankful for them, but I guess I expected more.
I want everyone to understand how important this walk is to me. I want them to understand how important the testing program is.
You never understand what an incurable disease is until you, or a family one, have one. From the outside, there are no clues leading to PKD, I am like every other normal teenager.
I wish I could make people understand how scared I get. Or even how alone I feel at times too. What happens if theses programs don’t work? What happens when my kidneys fail?
I get so mad sometimes about this disease. Why I had to be the one to get it, or why it had to attack my dad.
I am constantly looking for hope in the bad situations, but it’s really hard when you feel so alone. Hardly anyone in South Bend knows about PKD, and if they do, we don’t talk about it together.
This is why I am looking forward to going to the walk. I will have that community. I will have those people working towards the exact same goal as me.
It’s hard not to get discouraged. I know this isn’t the most positive entry that I’ve made, but it’s what I’m feeling right now. I have my good days and my bad days, and lately I guess I’ve had my alone days. I want everyone else to be just as excited about the cure as I am, and to be beside me every step of the way.
I feel like I’m letting people down, because I know that a lot of you read my blog to find hope, or a friend dealing with PKD. It’s hard. I know. I could use you too. :)
Good luck to everyone who’s doing the walk. And good luck to everyone who is involved, in any way, with PKD, or any other disease. It’s really hard, and the fact that you are reading this, and being proactive, means a lot.
I apologize for the bad grammar/writing/spelling that I am sure is in this.

Walk For PKD, etc.

2007-08-18T10:24:00.000-07:00

So I guess more people are finding out about me, about my story, and about PKD.

The article came out, and it is getting closer and closer to the walk. I think that I am more excited to go this year than I have any other. I have a team started, and if you would like to sponsor me, that would be amazing. You can go to my page online and donate directly there. The address is www.pkdcure.org/goto/lydia.dreyer

You can also walk online, or even find a place near you that you can walk. Check it out at the main address, www.pkdcure.org

It's been so wierd lately. People have been coming up to me to thank me for what I'm trying to do with this whole PKD thing. And I just want to put something out there. I'm just a normal teenager. I'm 18, and I have a kidney disease. It happens to be incurable, so I'm doing all that I can to find one. We can all make a difference in this world, it just depends on where we decide to challenge our energy.

I'm so luck to be in this program, to have discovered this amazing family that I have around me. I don't mean my blood family, I mean my "kidney family". All the people out there that are going through the same thing as me. The people that leave me comments telling me their story and how its nice to know mine. Sometimes its hard to be upbeat, ya know? It's these new people in my life that help me.

My dad is still doing well. Lately his toe has been hurting, so we don't know if thats because of the kidney failure or not. There are some white blood cells in the urine, but we don't exactly know where that is coming from. I still have complete confidence in his doctors, and know that he's doing well.

I hope everyone is enjoying the end of summer... Hang in there!

Hello Hello

2007-08-09T06:26:00.000-07:00

So.

I'm home, and I have started the new medicine.

I'm feeling excited and hopeful... and exactly the same as before, in a good way of course. The medicine hasn't done anything negative to me, as we knew that it wouldn't.

I just wanted to say thank you to everyone thats been commenting me with words of encouragement and thankfulness. Know that I'm not the only one out there doing these tests and whatnot. I may be one of the only ones who's talking about it, but there are a lot more like me. :)

I think that its really important to take an active part in a disease, especially a disease that you have. If you're interested in giving up some time on a semi-regular basis, then think about doing a testing program. It is not that scary. I admit that I was a little bit nervous at first, but its really not that scary at all. And just think, you get to take an active part in finding a cure for this common disease!

And if testing programs aren't for you, there's always the PKD walk. The years that I went to the PKD walk, I loved it. I wish that I could go back this year, but I happen to have a marching band competition. But they're great. You get to meet the PKD community, and also get to raise money for a worthy cause. They're fun. Filled with music, friendship, laughter, and raffles!

Hang in there guys!

Hello From Denver

2007-07-30T17:17:00.000-07:00

So I am currently writing this entry from the "Teen Lounge" in the Children's hospital in Denver, Colorado.

Mom and I got here, after the bumpiest landing we've ever experienced, yesterday at about 4:00PM. The trip was filled with wasabi mayonase (very hot) sandwiches, laughs, and a lot of spilling on my part. I managed to cover my white shirt with random food items, and other stains that I have no idea where they came from, or what their nature is. So basically, it was a normal trip.

I got to the hospital, checked in and started a 24 hour urine collection, and monitoring my blood pressure. The room is nice, and Mom has a window seat to sleep on. Not to bad, due to the fact that she is quite used to sleepin in odd places.

We checked in with the nurses, and I was informed that at 9PM I would start a fast, preparing for getting my blood drawn in the morning.

After that, we made our way down to get some food, and on the way talked of excitment and fears, and the good looking food. :)

In the morning, I woke up at about 7 and got ready for Dr. Melissa to come in and visit.
She arrived and we talked over the program and whatnot, and then we got my blood drawn, which turned into quite the adventure.

After getting my blood drawn (and I handled the needle very well!) I sat up to monitor my blood pressure. I was sitting for about 2 minutes when the tunnel vision started. Everything went black and fuzzy around the edges and I called to Mom, saying that I was going to black out.
Apparently I did, because I remember Mom and the nurse looking at me, and I was laying down. I was sweating, and my ears were ringing. I was quite spooked I must say.

We checked my blood pressure and it was really low. About 73/58 ish. (I usually run in the upper 130s/high 90s).

I was supossed to get an ultrasound of my artery at 10AM today, but we had to wait on that untill my blood pressure was stable.

Dr. Melissa came in and we talked more about the study. And I must say, I'm really excited. The basic idea is that the "pravisit" will stop the cysts from growing, etc. Apparently the abnormal kidneys produce hormones, and then those hormones accelerate the growth of the cysts.

Other things can come out of PKD, such as slower artery dialiation. WHich is why I will be getting the artery ultrasound (tomorrow, because we had to push it back). They will also be checking the left side of my heart, because PKD patients have problems with that area sometimes as well.

Ive been writing a lot, and I know I left a lot out, but I will be on tomorrow to keep everyone up to date!

Lydia

OH! Dad is doing well, of course! He made it into work again today, and drove himself to the lab today for the first time.

In A Few Moments

2007-07-29T05:12:00.000-07:00

In a few moments, I'll be walking out the door and on my way to Colorado. I'm really really excited. And nervous.

When I tell people I'll be involved in the study, they always ask me if its required or if I was told to do it. I am utterly and completely willing and excited to do this. I think that its so great to be able to do something that's actually working for a cure.

I mean, think about all the people out there that have PKD. This will be helping out a lot, and there are a lot of other programs out there up and running. The cure is so close, we just have to do as much as we can to get there.

So. Off we go. Mom and my flight is in an hour and a half, so we need to leave and make it to the airport.

It's been awhile...

2007-07-25T12:46:00.001-07:00

Hello Hello!

I know it's been a pretty long time since I've been on here. Things have been a little hectic over here, I've been going to camp and whatnot.

Mom and I leave this Sunday to go to Colorado, and I'm super excited! We have all the information, about flights, shuttles, and such. Once I get there, I start my first 24 hour urine test, and prepare for the weekend. During the first stay I will have:
A complete history and physical examination
And MRI of the Kidneys
A Brachial Arterty Ultrasound
Collection of all urine for kidney function tests
A blood draw for routine analysis and genetic study (one time only).

I'm stoked I must say. There will be a computer there, so I will kepp you updated.

Dad is doing great. I asked him to comment, and he threw out a few stray words while trying to focus on the new Harry Potter. Basically. He's doing well, walking, and actualy went into his office for very short visits. He's like everyone else, minus the fact that he can't drive.
And the not driving helped out a little, because I recently totaled my car. :)

Heh. I guess its true, never a normal day in the Dreyer Household.

A Comment From the Donor, LORI!

2007-07-13T06:51:00.000-07:00

Hello Miss Lydia, I hope that your Dad is doing okay and it was more scary than medically dangerous?

You are a very dynamic writer, you also said some very nice things about me. Thank you. I have been very overwhelmed by the love from your family, I have always felt that the true bonds of one's family is not defined by blood, but by love. Your family is my family.

Your Mom is a wonderful, graceful and intelligent woman, if not for her I would not know your Dad. I feel priviledged to be able to help such a patient, intelligent, creative soul.

I am now wearing the green donor bracelet your Mom gave me proudly. I love coffee again, and unfortunately food. I went to Connies yesterday, and it was awesome.

I would also like to say that anyone considering donation. It is not as painful as either a csection delivering twins, or back surgery to repair an L5 disc rupture. I think we should step back occasionally and ask ourselves if we are making a difference, if that is important to you as a person, this is a fairly logical decision. With very little risk to myself, I have hopefully extended the life of a very deserving person to continue to shower love on his family, friends and students.

I also feel like in some way I am living a creative life, in some "flat stanley" way. I cannot wait for the celebration of our first year of donation next summer. I think it would be a hoot to get everyone together here at my house.!! Please give everyone a big hug and kiss for me. Love to all, Lori

eek!

2007-07-10T04:13:00.000-07:00

So last night, I think that I had the scariest moment since the transplant.

I was sleeping and Mom came running into my room at about 2 in the morning to wake me up. All she said was "Lydia! Wake up! Papa just fell down!"

I got up immediately, and I kid you not, that run down the hallway felt like eternity. She didn't tell me if he fell on his kidneys, or his head, so I had no idea what I was going to find.

I walked in there, and he was sitting on the floor, holding his knee and looking quite stunned. Apparently he tripped over something and came down on his knee.

We cleaned up his knee, only to notice that his toe was bleeding as well. We bandaged that up, because there is no way he can afford to get an infection in his toe.

So I mean, yeah, he's fine. But when you read that he fell, weren't you a little nervous. Weren't you afraid that he fell in the incision?
It's scary. But its also a reality that we have to be so careful around Dad. I get scared when I drive him places, just because if I get in a car accident, it would be really bad.

But I mean. He's still the same old Papa. He still woke me up this morning for work, and made me a sandwich, even though he didn't have to. He's the same Papa, even though he has to take 9 pills twice a day, and hasn't left the house since he came home other than to go to do Labs. He's still the amazing father that I have, only a little more fragile.

I guess this morning was a reality check. A reminder sent out my the cruel world that Dad is changed, and we have to be really careful, especially right now.

I didn't write this to freak all you guys out. I wrote it so you can feel what it feels like over here. How its joyous every time I look at the new life that my Dad has, but its also scary to see how fragile he is.

SO keep praying. Thank God that he only fell on his knee and hurt his toe. Thank God that he has a kidney and is doing a lot better. Pray for the pain that he's in. Pray that infections stay away. And pray for the fact that my Dad's alive. Because I love him dearly, and I know that he makes the world a better place every day. And still, Pray for Lori, thanking the Lord for people like her, and the amazing strength she has to give an organ to another person.

From Mom Again

2007-07-08T12:55:00.000-07:00

Hello racing fans. Indi here at home as of yesterday afternoon The boring drive was uncomfortable for Kev but being back is so nice. I went to church this morning with Lydia, but Big K stayed in to rest up and heal. We must be SO careful about public exposure, crowds, hugs, germs, buffets, etc. We have hand-sanitizer by the front door just like at the hospital. Yes, I'm a bit paranoid about a whole new level of sanitation. But don't worry- I plan to turn Nat and Lyd into clean freaks- (ha ha on that one).

We attended "transplant clinics" Tuesday and Friday at Clarian. They do thorough blood and urine testing, all vitals, and then the team examines him. He's doing well on most accounts except funky phosphorus and adjusting to new blood pressure levels. His blood sugars have improved so we believe we are out of the whole insulin need deal. YUK- pray for that one. They took out the drainage tube ( that was gross) so we work on healing that hole and the mammoth scar. He still has to take pain medication regularly.

Transplant recipients are required to have two "clinics" per week for the first month. then one per week for two months, then monthly for atleast a year. Dr. Goggins, who is so cool, arranged for Kevin to do one of the weekly sessions here with SB Medical Foundationadn our nephrologist, Dr. James Porile. So that is great, and only means one overnite trip to Indy next week. Clinics begin at 7 AM and there are lost of patients. We have met some wonderful people and heard some incredible stories. Some folkes have 4 kidneys, some have had subsequent transplants (obviously). We think Kev may win the prize for one of the largest removed. He has lost 15-20 lbs, but we're not sue how much of that was football. Don't worry if he lost weight, I have found it. I also have new respect of Haagen-daz as a stress reliever and a source of phosphorous for Kevin. In fact, its such a delight to open up Kev's diet after 3 plus years of no potatoes, bananas, tomatoes, broccoli, milk, cheese- some of his favorites. We now are low-salt mainly. The cheese and ice cream thing is wonderful. Oranges and orange juice are back in and I've been fruit salad and yogurting him- he loves it. He seems to still like me too in spite of all my wierdness.

A word about donor Lori. She's doing well except hasn't much appetite. Her passion/taste for coffee has dwindled. She's happy as she wanted to drop some lbs. after the surgery. Things are just seeming to fall in place really well. We are so grateful.

One last deal from me...

When Lori and Dan left to return to Kansas they left a pint of Haagen-Daz Banana Split. ( Banana and whipped cream ice cream with strawberries, hot fudge and cherries)
The mutiple choice question from Prof. Dieckgrafe is this:

How did Indi interact with the Haagen- Daz?
a) She tried only testing it to make sure they hadn't forgotten the strawberries
b) She fed small spoonfuls to Kevin to increase his phosphorous levels
c) She thought about it all the time
d) She finally got up in the middle of the night and finished it off
e) All of the above

You guys take care!
Love,
Indi

Home Sweet Home

2007-07-05T10:58:00.001-07:00

I have been home for 2 days, and its nice to be back, but not as fun because Mom and Dad are still in Indy. Natalie and i stayed for the first clinical, and then left after that.
Dad has his second clinical on Friday, and then will hopefully be coming home! At the last clinical, there was no bad news, Dad was just told he needed to drink more water.

I will update more when I find out!

:)

2007-07-02T07:24:00.000-07:00

Mom Blog Update-

Happy July to all of you! We have Kevin here with us at the Extended Stay Deluxe in Indy. He is resting for longer periods of time and eating as many requested foods as possble. I'm trying to be a detailed, conscientious nurse but I have to admit that the medication regiment is intimidating- about 9 medicines several times a day plus a glucometer, weight, blood pressure, and temperature. I'm wearing a white nurses suite with a cap, but still look and act like Phyllis Diller.

Natalie and Lydia are still with us and will stay for Kevin's first clinic tomorrow. They they return to South Bland and jobs, etc. Natalie is off to North Carolina for Uncle Ron's 50th B-Day and will catch up with Wilhe.

Lori's kidney seems to be doing a teriffic job. Kevin's body is slowly adjusting to a new blood pressure norm and this process is really anatomically fascinating. I have loved the interactions with the transplant team, they allow us detailed technical refrences. We love to pick their brains about the PKD intensaty, genetics, Lydia's future. I hope this miraculous experience will encourage you to become advocates for PKD research and organ donorship. The gift of life is so very beautiful and the ultimite in human expression. Keep eating those kidney beans!

Love, Indi

*A NOTE TO ADD TO THAT FROM LYDIA

If anyone, at all, is interested in helping out the PKD research field then there are many places to do that. If you go to the webite, www.pkdcure.org , there is a walk you can sign up for, or even a way to make a donation.

Thank you for taking the time to read this, I know some of you don't even know Me or My Dad, but it feels great to be connected with a caring PKD community!

WE ARE HOME! (kinda)

2007-07-01T14:08:00.000-07:00

We have just arrived at the hotel. Dad is laying on the bed in his fabulous Spiderman 3 pajama pants that he got for Father's Day. He is in some pain, but he looks great, and is coping well. He's tired, but we are having trouble letting him go to sleep. It's great having him back!

I asked him if he had any messages and he said that he's happy to be out, and that he still can't get over the fact that he has someone else's organ, but its great.

We left the hospital with 50 masks and a lot of antibacterial gel and a better-working Father. He is supposed to wear the masks if he is in a highly crowded place for the next 3 months; or if someone is sick, they need to wear a mask when they are around him. Right now we have to make sure he stays healthy and keeps the kidney working well. We need to track his meds and weight and blood pressure and such. His medicine is on a timed schedule to make sure that everything works out well.

He goes in for his first clinical on Tuesday, so Mom and Dad will stay in Indy as long as it takes, to avoid the drive back and forth.

Looks like all our prayers were finally answered...

Eck.

2007-06-30T19:09:00.000-07:00

First of all, I'm quite sorry that its taken me so long to update. We left the computer at the hospital, and then were not able to use it earlier today.

Dad was supposed to get out of the hospital today, but then there were problems with his Phosphorous levels, and his blood pressure was low. He also had problems with dizziness any time he sat up or tried to stand. Because of that, he was forced to stay in the hospital another day. Hopefully he will be coming home to the hotel tomorrow, but our plans have already changed once, so we will just be happy with whatever we get.

By the time that we left tonight, Dad was up and walking and feeling much better. Apparently, when Grandma saw him earlier in the day today, he looked the same way that he looked two days ago, so I was afraid we were doing one of those "two steps forward, one step back" type of deals.

Mom is happily eating kidney beans in the hotel room, in celebration of Dad's new one! So go on, have a few of your own if you get the chance. :)

Indi's Entry

2007-06-29T08:57:00.000-07:00

Dear All Kevin Dreyer Supporters-

Yo! He talks, he walks, he pees a lot. YIPPEE and Praise the Lord.

The transplant team is quite pleased with his progress and will release him tomorrow (Saturday). We of course need to stay down here for clinicals (testing, updates) for at least next week on Tuesday and Friday. After that the clinicals continue and we will need to decide if the drives back and forth to South Bend will be to miserable taht soon. His incision is huge (about 12 inches) and pretty darn sensitive. He really needs to rest and heal and rest and heal. He had diabetic and insulin training today which is the only rather weird quirk in this so far. They believe the spike in his blood sugar levels may be accounted to the immuno-suppresant regiment. Hopefully this will only be temporary (2-3 weeks?!?) Again, Kevin is looking good, managing the pain well and enjoying his portable DVD player and headset that we gave him for Father's Day. Take care all of you and I'll try to stay in touch with this BLOG, GLOGG, KLOG, or whatever it is through Lydia's hands.

Love, Indi

Lydia's Entry

2007-06-29T08:29:00.000-07:00

Things are going pretty well. Mom and I had quite the adventure last night. We are constantly getting lost in Indianapolis on our way to and from the hospital.

I had the fun of taking Dad on a few walks around the floor. He's not allowed to go off the unit, so we've come quite familiar with our surroundings, such as the bandaged Simba, and the nourishment room.

Yesterday was quite a day I must say. I felt so bad for Dad. I guess something was messed up with his IV, it kept saying there was a break in the line. Eventully, they took it out, but before they did that, he was stuck with a painful IV not hooked up to anything just lying in his arm. Patience is a virtue, and even though he said he was growing impatient, he handled it all quite well.

He is also up and using the bathroom, and enjoyed a little bit of the movie Birdcage with my Mom earlier in the day. That was quite the contrast to the 3 hours of CSI that he watched with his brother, Robin, the night before.

I know that he is feeling quite loved, as well as the rest of the family. A lot of people have asked if they could send letters or cards to Dad. We are hopeful that he will be leaving his temporary home at the Hospital and join us at the hotel until (atleast Monday). Our stay ends on Monday, and we are still wondering where we will go next. We have to look into location and price and moving all of our things. The address for that hotel is:

Kevin Dreyer, Room 125
C/O Extended Stay Deluxe
5350 W. Southern Ave.
Indianapolis, IN 46241

So. I know I've talked about what's going on and whatnot. But I know there are people out there who are curious as to what we're feeling on the inside.
Me? Eh. I'm nervous, and I'm relieved. I'm really appreciating live, and people, and organ donors. I'm terrified about me getting a kidney transplant, because, my Dad is such a strong man. He can be at a pain level 5 or 6, and still walk around that stupid floor. It's not even an interesting walk, its just the same route over and over, but he goes through it because he knows he needs it.
I'm a little bit scared about growing older with these kidneys. If I'm going to get fat. Or get that belly. And the pain. And blech. I think that's why I'm so excited about this testing program. Finding a cure is an amazing thing, I mean, just think if we could have avoided this transplant for my Dad.

I know I've written a lot. And my Mom wants to write some too, she has finally figured out the internet thing ( to a certain extent ) and wants a way to talk to all of you.
Thanks again!

9:48pm

2007-06-27T18:41:00.000-07:00

Things are going really well. I was at the hospital for most of the day today, I got there right as Natalie and Willa and Gran left to go home. They made it home safely, and are only a tad worried about tomorrow and who will watch Willa during Gran's surgery. ( She has to remove a scrasquamis spot from her leg. I'm sure I spelled that wrong, its possibly pre-cancerious )

Dad's creatinine level this morning was 2.0 which they said was the best that you could expect over that amount of time. By the time that Mom and I left to go back to the hotel, it was at 1.8. For those of you who don't know, creatinine is what is used to evaluate the kidney function. When the level is up, that's bad, so lower is better.

He's not moving much, due to the pain. Grandma said that he could have gotten a part as a Corpse in 6 feet under, because he was staying so still. They had him standing up twice, and he may be sitting in a chair later on in the night.

He had some jello today, and his first real food was an amazing brownie and shortbread deal that someone had made for the family/Dad. As we left the hospital he ordered a cottage cheese and fruit salad and we are hoping he kept that down.

Lori had a bit of a migrane this morning, so the goal for her was to get that down. By the end of the day, she was feeling a lot better, and taking a nap.

I also got some news from the people in Denver, Colorado. Mom and I will be flying out July 29th to begin testing, and we will come home August 1. The flights will be quite long, because apparently its a bit difficult to find flights from South Bend to Denver. :) We're both very excited about that!

Mom is currently passed out on the chair. She's extremely tired, as this has been quite hard on her.

Continue to keep us in your prayers and thoughts, and thank you so much for all the people out there supporting us!

8:34pm

2007-06-26T18:13:00.003-07:00

I’m currently at the hospital with Mom and Dad and the rest of the family. Dad is doing a lot better than before. When I first went in to see him he looked so weak. It was exactly what I thought it would be. He warned us not to bump the bed, because he is in a lot of pain. His eyes were watering, and he was quite groggy. At first, he didn’t want to use the morphine, but he’s been using it a little bit more now.

Now, a few hours later, you can really tell the difference. His eyes look great, and his face looks different. I mean, he didn’t look bad before the transplant, he just looks better now. I asked him if he wanted me to pass on any messages in this BLOG, and his response was, “Tell them I’m happy to be alive”. They just asked him his pain level, and he said it was about a 4.5. That’s a lot better than what it was before.

Lori is also doing well. Her surgery went fine, and she is quite excited about seeing the DVD that they took of the surgery. The only complications she had was when they took her oxyen away during recovery, she kept going to sleep, so she had the doctor’s a little scared. She was actually in the recovery room with Dad, and said that she was watching him the whole time she was in there. When we went up to see her earlier, it was quite an emotional moment. Seeing her lying there just really got me I guess. I mean, she’s my Mom’s friend from high school. She lives across the country. She didn’t have to do this, but she did, and we are so lucky that she did. She just dropped everything to help us out. It’s so incredible, people like that.

She said something to me that I will never forget. It went something like this: “ Your Dad needed this. You guys need your Dad. He needs to be a Dad, a Husband, a Brother, a Son, and maybe later on a Grandpa. I’m not going to stop that. What’s a few days of discomfort, when he gets that chance again?” Wow.

She was lying in that bed, with only one kidney, and she did it all for my Dad. Apparently people were surprised when she told them she was only a friend, and not a relative or a spouse. Not a lot of people really got that she could do that for a friend. Donor’s amaze me. I mean, they give the ultimate gift, the gift of life. I only wish that I could do that for someone that really means it. To then see them afterwards, in a new way. Healthier than before, all because of something that I had to spare.

Mom wanted to add something in here, and she wrote this at the hospital to type up. I think I’ll sign off on that note. There may be some repeats of what was said earlier, but she wanted to make sure it was all known:

Greetings from the Clarian Transplant Center at University Hospital in Indianapolis. We are in full attendance at the bedsides of Kevin and Lori. The transplant recipient and the donors are on different floors, so we are all floating and making rounds. Kev’s mom Donna Jean, younger brother Robin, Gran/Joyce and the rest of the family are here along with Dan Brewer, Lori’s wonderfully supportive and fun husband. Since recovery they have been resting between all of the monitoring and logging, etc. Lori donated a healthy right kidney and placed hers much lower near the hip cavity. They connected the two ureters and the function of the new arrangement is very efficient and responding with strength. Kevin’s PKD laden kidney was even larger than they originally thought ( the size of an NFL regulation football), so we are curious to find out the actual size and weight. Kev is already looking more svelt! Lori’s surgical team video taped it and she is thrilled about watching it with whomever can take it. We are pleased with the attention and care here and will keep you posed as we enter the immuno- suppressant, rejection and acceptance stage. Please keep us in your prayers and we thank all of you for your support!

2:26pm

2007-06-26T11:20:00.000-07:00

Dad is out of surgery, and doing fine. We haven't seen him yet, but we have been assured that he is alright. Apparently the kidney that they took out was larger than a NFL Regulation Football, and they said that Dad must have been in a lot more pain and discomfort that he let on to. He will be in recovery for about an hour and a half or so, and then they will move him to a room.

11:33am

2007-06-26T08:33:00.000-07:00

Dad went into surgery about an hour ago. There was a bit of a mix up, apparently they were supposed to be there at 5:30 like they were originaly told. I guess they got a letter that said check in was at 7, and the surgery was at 9, but that letter was wrong. Because of that mix up the surgery was delayed. They decided to take his right kidney out, and they think we may be able to see him after about 6 hours or so.

There have been so many stories told about Lori, and I really wish I could tell all of you. She's an amazingly strong person. And halarious as well.
I guess her husband has a cold, and she made him sit in the back the whole way to Indy, and sprayed him with LYSOL every time she coughed, and was constantly handing him antibacterial wipes every time he coughed. She says she is determined to stay healthy, and if she would have gotten sick on the way up here she wouldn't know what to do.
She also made a lot of cookies, and wrapped them all seperately to bribe the nurses with. They told her she couldn't eat in 24 hours, but she is planing to bring herself a banana and some food to hide from the nurses.
Now those don't give her justice to her personality, which is a shame, because its a great one!

Check back for updates through out the day!

We're here!

2007-06-25T14:23:00.000-07:00

Mom and Dad went down to Indy yesterday afternoon, and Natalie, Willa, Gran, and I all came down today after Vacation Bible School. I'm glad that we got a chance to go to VBS, because it felt so good to know that we have all those people supporting us. I mean, of course, I know that there are a ton of people supporting us, but it was really nice to gets those words of encouragement from all those people.

Dad met with the surgeons today, and they are comfortable and excited for the surgery to begin. It turns out that Dad WILL have one of his kidneys taken out, so that increases the time of the surgery by about an hour. Lori goes under before him, and he checks in at 7am, to begin the surgery at 9am.

We are at an extended hotel suite, and its going to work out well. We booked for a week, and we will figure out where we need to go after that point. We're 20 minutes away from the hospital, and about 6 miles from downtown, and Grandma Dreyer and Uncle Robin. Wilhe's quite content with the spinning chairs, and I know we're all really happy to be together. Mom is currently napping on the couch, I'm sure tired out with all the news and excitement.

I must say, its been a bit hard on all of us, but we're holding up really well. The past week contained a lot of bickering, because all of us are on edge, but now we're all together again and doing fine. We're really really thankful and grateful for each and every one of us, and the support system that we have in all of our friends.

It's been great I must say. Everyone's really willing to do anything that they can, and some have insisted that they must.
I guess at this point, pray for all of us. Pray for Lori, her safety in the transplant, and the love that she is sharing with us through the ultimate gift, a kidney. Pray for my Dad, that he stays well during the procedure, and after that as well. Pray for my family, that we may have the strength to be there for eachother and my Dad. Pray for the people who haven't yet found their donor, and the donors out there willing to make that gift.

I will have the computer with me at the hospital ( I think, or atleast in the hotel ). I promise to keep all of you updated as soon as we hear anything new, and it is convient to do so. :)

THANK THE LORD!

2007-06-21T15:56:00.000-07:00

So last night, as I was pulling out of the driveway to go to youth group, my dad stopped me and told me he had to tell me two things.
1- my door was open
2- Lori passed all the tests and is going to be the donor
I can't even explain the thoughts that were going through my mind. I was happy, relieved, and I wanted to call everyone that I knew. I had so much trouble driving down the street, because I wanted to shout at everyone I saw. "Hey! My dad has a kidney now! He's going to be okay!"

I wanted to post that last night, but Dad made me go to bed after youth group. When I went to bed, I assumed that the transplant would take place the first week of July, because the 6th was the only day that they had an opening.
But then today I was getting ready to go to the beach when I got another piece of news from Dad as I was about to walk out the door. Apparently, the next opening actually wasn't untill Friday the 13th, and Lori told them she wouldn't do it then, but anything after that was to far away. So, they pulled some strings I guess, and the transplant is now going to be Tuesday.
That means that in 5 days, my Dad will be having surgery, and getting a new kidney.
That means that he can eat a banana, and not have to take so many pills. And he can have a working kidney.

Mom and Dad are going down Sunday and then my Gran and my sisters and I are driving down Monday. On Wednesday, Gran and my sisters will be going home so my Gran can have a surgery, and I will stay with my Dad and my Mom and my uncle and Grandma who are meeting us there.
We have a place to stay, Lori knows people that work at the Marriot, so they will be getting us hotel rooms at the employee rate. Everything is going so fast, but its going so well.

A few days ago, the people in Colorado contacted me, and it looks as if I will be flying out to Colorado July 29th to begin testing. All this waiting has paid off.

But now we have to wait 5 more days. Until it all happens. And I couldn't be happier either!

?

2007-06-19T04:55:00.000-07:00

Almost everyone that I've talked to in the last few days has had the same question: "Do you know yet? Is she the donor?"

Well. No. We don't. And its driving us all up the wall. Every time I walk into the kitchen, and see Mom or Dad on the phone, I always ask if we know anything yet. My older sister is going insane waiting, and her new take on the situation is to be really mad that we don't know yet.
Personally? I'd love to know, but I've also learned that a lot of the process is waiting. So I'm going to wait as long as it takes for my Dad to get better.

Colorado also hasn't gotten back to me yet. I think that kidneys are just a slow thing?

Extended Family

2007-06-14T10:17:00.000-07:00

Kate, especially thank you so much for that comment. It means so much to know that I'm not alone in this whole ordeal. Things have been really hectic lately at home. We're all on edge. Mom and dad are asking if I've heard from Lori. (we email back and forth) We're all walking around wondering if its going to be her. We planned a trip to Indy to look for housing, but that fell through due to complicated schdueles.

We were supposed to technically know by now. But, I got an email yesterday from Lori. And apparently when she was doing the 24 hour blood pressure test the cuff stopped working, so she had to restart. She said she will know by 1 today. I'm so nervous. I know that the whole family is counting on her. Everything has worked up to here. She's gotten so far. And every day I thank God for the amazing person she is. So we will know in maybe an hour or so. In my heart, I've already decided that it's going to be her. I guess the transplant cordinator already talked to her family doctor, so that show's promise. She's really healthy, so I don't see why it wouldn't work.

We have tentively scheduled the transplant for the 25th or the 26th. That's 11 days. In 11 days my dad could be in the hospital getting a new kidney. I'm terrified.
My dad has long black hair that is a couple of inches past his shoulders. His hair is part of his character. But for the transplant he wants to cut it off. That is going to be really hard for me. I'm already going to have to see my dad weak, with no immune system, and then he's not going to have his hair.
I don't know what this is going to do to everyone in the family. We're all excited and nervous. I don't think this has become real to us yet.

My status? Well Becky asked if I have had any complications.
I haven't really run into anything after the whole peeing blood thing. My only restrictions are contact sports and I can't take Ibuprofen. I've had high blood pressure for the 6 months or so, but that has been taken care of by prescribing blood pressure medicine. You can't look at me and tell that I have a disease. I don't have to restrict my diet or anything yet. I have to be smart when it comes to the things I do. I probably shouldn't play rugby or dodgeball.
Colorado sent me some information on the testing program. It looks really interesting. And I can't wait to get started. I just have to schedule my first visit. I have a packet of information that I was going to put up here, but at some point in the morning I misplaced it. (sorry!)

So. Now my family is just waiting. We're waiting to hear from Lori. And I promise all of you that the minute I know, and calm down a bit, I will get on here and tell you the update.

Thanks for all the support! And I'm quite sorry about my lack of spelling skills.

Colorado?

2007-06-08T17:51:00.000-07:00

So this Blog just got added to the www.pkdcure.org website. So hello to whoever is reading this. I hope you know you're not alone out there. :)

A few days ago the people in Colorado called me to talk about the testing program. I am offically in I guess. Before, I had only heard from the nurse that I was in, but the other day it was the doctor herself. I admit, I was at work when I got the call, so I don't remember all the details...BUT she explained the testing and that I would need to sign another consent form to begin. I guess I will be in the hospital for 48 hours and they will run all kinds of tests. I'm really just waiting on that information packet to arrive.

My dad's donor, Lori, also has been in touch. She passed the mental exam... I guess they asked her if my family told her she had to do it to remain friends, and they also had to make sure she wasn't doing it for money. She has a doctor's appointment on Monday and is taking the last test on Tuesday. That means that we will find out if my dad has a kidney in 5 days. I really hope that it all works out okay.
I think that we've all gotten attached to the idea of Lori being the donor, and I don't know what would happen if she couldn't do it. I guess keep all of us in your prayers. And thank God every day for the people out there willing to be a donor.

I think I'm out for now. I will keep the updates going though!

Grocery Store Shopping

2007-06-03T11:32:00.001-07:00

So I went shopping with my dad yesterday at Martins and I saw this lady wearing a PKD WALK shirt. I said hello and mentioned that I went on that walk in St. Joe Michigan, and that her shirt was the only other one that I've seen in South Bend. She then went on to tell me that her friend was the one that had PKD and had a transplant in November. So we talked about that situation.
Her friend went to the MAYO clinic in Minnesota, and she said she was out there for about a month. And that her friend's kidneys had gotten so large that they had to take them both out before she had the (live donor) transplant. I guess they rented an apartment that the clinic had made possible for the patients/ family to live in.
It felt so good to talk to someone that had a PKD transplant. My dad talked to her to, and I thought it was a neat thing to run into someone else that was affected by the disease, but had a good positive story.

I still think it will be a week or so before we find out if Lori will be the donor. Sometimes I feel like such a jerk, because I know that this transplant will take up a lot of my summer. Or my time. And I get frusterated with the whole ordeal. But then I think about it. It will be so good for my dad to not have to constantly worry about what his potassium levels are, or to check his blood pressure. And he's not a the COMPLETE discomfort stage yet, but I mean, when I hug him, I can feel his kidneys from his stomach.
I'm nervous about doing this transplant down in INDY. They don't really have those homes set up for families, so I don't know where we'd stay. Or if we'd have to drive back and forth a lot. But I'm even more nervous that this donor may fall through.
Keep us in your Prayers!

Introduction

2007-06-01T06:02:00.000-07:00

So I've always enjoyed writing, and I've got a lot to think about. I was on the website, www.pkdcure.org and I was reading some of the blogs on there and they just made me feel connected. There was the one that Nathan wrote. He had a transplant in January of this year. That's hope. I skimmed through the other ones, but I think the transplant one really got me.

My name is Lydia. I'm going to be 18 in 3 days, and I have polycystic kidney disease (PKD). I don't know who's going to read this blog and whatnot, but just in case you don't know, PKD is:

Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases, effecting 600,000 Americans and 12.5 million people, worldwide. ADPKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined.
ADPKD causes fluid-filled cysts to grow on the kidneys. Over time, these cysts multiply and grow, in 50 percent of cases, causing kidney failure. Dialysis and transplantation are the only treatments for kidney failure. There is no treatment or cure for PKD.
ADPKD affects 1 in 500 newborns, children and adults regardless of sex, age, race or ethnic origin. It does not skip a generation. Parents with ADPKD have a 50 percent chance of passing the disease on to each of their children.

There are two types of PKD. The most common one is ADPKD, and above is the information given on the website pkdcure.org. I will probably site that website a few more times, because I have found it extremely helpful with a lot of things. So anyway, there are cysts on the kidneys. On the inside and the outside. If you want to freak yourself out, then go ahead and do an image search on google for "polycystic kidney disease"... not a pretty sight. My father and I both have ADPKD.

I don't really remember when my dad was diagnosed with PKD. I don't remember how they found out either. I honestly wasn't too worried about it, and not a lot of memories stick out of my mind when it comes to the diagnosis.
I remember one day we got in a fight, and my dad told me that the doctor gave him 10 years until his kidneys fail, and that was why he was more stressed out than me. I am not going to hide the fact that I was a pill growing up. Especially when I was in my pre-teen/teen years. I gave them hell.
Hearing my dad say that made me think a little bit more about what was going on, but I was still pretty much in the dark on the whole ordeal... until it started to directly affect me.

I found out that I had PKD when I was coming home from a youth group retreat. I was wrestling with someone, and they threw me down and elbowed me in the stomach to prove defeat. The wind was knocked out of me, as well as my ego. Because I lost that match.
When I got home I noticed that I was peeing blood. (sorry if that's graphic) I told my mom, and she assumed that it was a bladder infection.
That was on Friday. I have a younger sister and it was her birthday that weekend, so we were pretty concerned with the party that was coming up, so we put the bladder infection on the back burner.

Honestly, it bugged me a lot. I didn't like the whole cranberry-pee thing that I had going on. It freaked me out. And I didn't like it. I think it was the summer before freshman year, and I had just turned 16.

Father's day was that Sunday and on the way home from church, we finally stopped at the walk-in clinic so I could get everything checked out. My mom and I went in, and everyone else went home. We had the cutest little Scottish doctor that had someone do an ultra-sound, and that's when they found the cysts on my kidney, and determined that I probably shared the disease with my Dad.

Mom and I went over to the ER, and my dad and my two sisters met us there. We did a CT scan and confirmed the diagnosis, and we set up an appointment with my dad's kidney doctor.
It will always strike me as ironic that we found out on Father's Day. That was June of 2005.

So where are we now?

My dad now has 14% function and is on the donor list. We have gone through 2 or 3 donors, and are on our last one right now. Her name is Lori and she's been a blessing to our family. She lives in Kansas, and we live in Indiana, but she's willing to make the trip to Indianapolis for my dad. She's healthy as an ox and has gotten pretty far. She's compatible in 4 out of the 6 antigens. ( I don't know what that means, but they like to do the non-living transplants with 3 out of 6). She goes to a psychologist next week and is seeing a kidney specialist as soon as they can fit her in.
We are extremely hopeful and are praying that she will be the one for my dad. We're hoping to have the transplant at the end of the month.

I signed up to be in a test program in Colorado. And that could be a reason why this blog could be interesting to you. I can tell you first hand how the testing programs are going. This one will give different patients a placebo and a pill for high cholesterol. They're thinking that the cholesterol medicine will help to stop the cysts from growing. If you want more info you can check out the website at: http://www.clinicaltrials.gov/ct/show/NCT00456365

Last that I heard, I was accepted and they would be flying me and a parent out to Colorado. I'm pretty excited and nervous. It feels to be doing something to start to find a cure. They are a little slow on getting back to me, so I'm a bit nervous that I won't be able to do it. But if that one falls though, then I want to find another one. I believe that we can find a cure, and I want to do everything that I can to help!