Hello from Washington. (:

[sammiejo23]

Hi everybody! My name is Samantha, and I am 19 years old. My story started during my first semester of college, when I was finally starting to live life how I wanted to live it; good classes, good professors, good friends and good fun. Everything was going better than I ever could have imagined, up until about the end of October, when I was diagnosed with strep throat. When I went in for that diagnosis, my blood pressure was unusually high and the nurse practitioner at my student's health center was quite concerned. She had me return within a week to see if it by chance it had just been the strep that had made it go so high, and maybe a bit of white coat hypertension, but to her great disliking, it had actually gone higher. I had always been healthy, and this hadn't been a problem ever before; in fact, my check up in August, just before I moved away for school, was completely normal. That was just two months earlier. But before long, I found myself overwhelmed with the task of getting blood work done, the results of which showed that my kidney function wasn't 100% normal.

No big deal, I thought. It can't be that bad. I was placed on medicine to control my high blood pressure and set up an appointment to meet with a nephrologist. The fun of my college days, quickly vanished, because instead of going out on the weekends with my friends and feeling like I could be included, I was stuck in my dorm watching my blood pressure. Making sure it wasn't getting out of control. Instead of being able to focus on my studies, all I could worry about was what was going to happen. Through November and December I underwent a series of CT scans, ultra sounds, biopsies, nephrologist visits and urologist visits. The end results; I would need to have my right kidney removed due to unidentifiable tumors. They couldn't determine if it was cancer or not, but on January 5th, just days shy of 19th birthday, I went under the knife for my right nephrectomy. Initially, the plan was to shave off the tumor and save a partial amount of the kidney, but upon operation, the surgeon realized this was an impossible task and ended up removing the entire organ instead, which we knew had been a possibility before the surgery had even been scheduled.

As it turns out, there were three tumors; all of them cancerous, so it was damn lucky they had taken the entire thing. The part I'm most thankful for? They got all of it, and I was cancer free. As for the left kidney, well, they thought that it would be able to stand on its own. The biopsy had shown a little bit of damage, but they believed it was simply from the high blood pressure going uncontrolled for as long as it did. It wasn't something to be worried about. Until it started to fail. Just 3 weeks following my nephrectomy, as well as a near episode of blacking out, and a while of not feeling so hot, I was back in the hospital having a permacath placed, starting dialysis, and getting my av graft. It all happened faster than I could see it coming, and I still find myself trying to take it in. Wishing it would go away, so that I could have my life back. I had to drop out of college after only a semester. I had to leave the best friends that I had ever made. The education that I longed for. The independence that I had waited my entire life to gain. And now, I am back at home. Forced to live on a machine 3 days a week. Lacking most of that independence. Unable to obtain work at the current time. Stuck sitting at home on the weekends, because who wants to party with a sober sally? And on the other hand, what fun are parties if you can't have fun in the same ways that everyone else is having fun? And let's not mention this renal diet. I can't eat any of the foods I used to eat, but I'm sure you all know all about that, so I won't take up time to rant about it.

I can't stand how quickly my life has had to change, and I can't stand that I never got to have a say in the matter. It isn't fair. And I know life isn't fair, but it's still hard to deal with.

[Rerun]

Oh Sammiejo, my heart cries for your loss.  The loss of the life you waited so long for.  Even if you get a transplant it will be better but not the same as a normal 19 year old.  You are grieving and this is very normal.  Stick with us and we will help you along the way.  Where in Washington do you live?  I'm in Spokane.

Rerun, Moderator        

[willowtreewren]

  Samantha 

[sammiejo23]

Oh Sammiejo, my heart cries for your loss.  The loss of the life you waited so long for.  Even if you get a transplant it will be better but not the same as a normal 19 year old.  You are grieving and this is very normal.  Stick with us and we will help you along the way.  Where in Washington do you live?  I'm in Spokane.

Rerun, Moderator        

Rerun, thanks for your reply! It is quite difficult knowing that I'll never get to be the 19 year old I should be, but I am just glad I have the chance to continue living. Life really is so precious, and I guess you really don't realize that until something happens to change it. I'm so glad I found this community though. I know it's going to help me a lot, because nobody in my life at the moment really understands what I'm going through. I mean, I try not to let them see it anyways, because it isn't fair to make my family and friends suffer anymore than they already have over this. But it's nice to know that there really are a lot of other people out there who get it. Without even having to try and explain it, they just get it. That's so cool! I have never been over to Spokane, but I have friends that are from the area. I'm from Puyallup.

[sammiejo23]

Samantha 

Hi there! Thanks for such a warm welcome. 

[looneytunes]

Hi Samantha and welcome to IHD!     My heart goes out to you for what you have been through.  Thankfully, you have found a great place to interact with others who are affected by kidney disease and dialysis.  There are quite a few younger folks like you that are members here also and we all understand what a life changer this has been for you.    

[RichardMEL]

Oh Samantha, my heart cries with Reruns for you. First of all, welcome to IHD! Sorry you have to be here under such circumstances though - that SUCKS!!

You wrote your story so well I was taken along with you from picturing this happy go lucky (gorgeous, ok I added that in because I'm a boy  ) young lady embarking on college and all it has to offer, and then out of nowhere being hit with the big C and then the big D. As we say down here - How much can a Koala bear?

Seems like you can bear a lot! You've got the priorities worked out (life is precious) and OK so you may not be the party hardy 19 year old, but you will be your own person, a very unique 19 year old - and that doesn't have to be a BAD thing. Just different. Who knows where this will take you.

Hopefully down the track you can investigate options such as a mode of dialysis that will suit your lifestyle better, and allow you to do some kind of study even (what were you studying?) and of course the potential of transplant has to be very real for you, and that could change your life yet again.

Having to deal with kidney failure for anyone is a very difficult thing, but as a teenager.. well yes, my heart cries for you.

We are here, come and vent, come and share, come and party with us !!

 

RichardMEL, Moderator

PS: you're still gorgeous, even with one kidney and on dialysis! Remember that!

[sammiejo23]

Hi Samantha and welcome to IHD!     My heart goes out to you for what you have been through.  Thankfully, you have found a great place to interact with others who are affected by kidney disease and dialysis.  There are quite a few younger folks like you that are members here also and we all understand what a life changer this has been for you.    

With every comment, I am more and more thankful I found this forum! To receive such a welcoming from people I've never even spoken to, is so comforting and touching. Sitting in dialysis, I find myself feeling really out of place, because everybody is significantly older than I am, and it's easy to doubt that anybody else can even relate to what I'm going through. But I take comfort in knowing that there are younger people on here, whom I may come into contact with. I think that's been part of the hardest part of this whole thing is not having anybody even remotely close to my age who can relate.

[sammiejo23]

Oh Samantha, my heart cries with Reruns for you. First of all, welcome to IHD! Sorry you have to be here under such circumstances though - that SUCKS!!

You wrote your story so well I was taken along with you from picturing this happy go lucky (gorgeous, ok I added that in because I'm a boy  ) young lady embarking on college and all it has to offer, and then out of nowhere being hit with the big C and then the big D. As we say down here - How much can a Koala bear?

Seems like you can bear a lot! You've got the priorities worked out (life is precious) and OK so you may not be the party hardy 19 year old, but you will be your own person, a very unique 19 year old - and that doesn't have to be a BAD thing. Just different. Who knows where this will take you.

Hopefully down the track you can investigate options such as a mode of dialysis that will suit your lifestyle better, and allow you to do some kind of study even (what were you studying?) and of course the potential of transplant has to be very real for you, and that could change your life yet again.

Having to deal with kidney failure for anyone is a very difficult thing, but as a teenager.. well yes, my heart cries for you.

We are here, come and vent, come and share, come and party with us !!

 

RichardMEL, Moderator

PS: you're still gorgeous, even with one kidney and on dialysis! Remember that!

Richard, your words are so sweet, and they are definitely being taken to heart! I have plans to return to college in the fall, assuming all goes well, and I'll be continuing to study Social Work. Kind of ironic that I would decide to make that my major just before all of this started happening. I've been talking to a couple of different social workers with all the hospitalizations and dialysis, and as easy as it would be to write that off as just another part of the problem, I like to see it as an opportunity to help me discover just how real social workers actually work. So I suppose this isn't all a bad thing, but I certainly have my ups and downs. Is it normal to become such an emotional wreck from all of this?

I'm assuming you're from Australia then? I've always wanted to visit there! It's on my list of places to see.

P.S. I really needed to hear that. You have no idea. And I will do my best to keep it in mind, because it's easy to forget sometimes, in the midst of all the medical madness.

[RichardMEL]

Samantha (or do you prefer Sam?) - you're most welcome. You totally got the message I was sending - that you have to remember WHO you are and that kidney failure, cancer, dialysis - all of it - does NOT define you. At your core you are still the lovely person who came to College with such hopes and dreams. And I am confident you can still achieve those dreams (certainly studying Social Work). My mother was a chief Social Worker of a major hospital here for a long time, so I have a soft spot for Social Workers (though I pretty much ignored our unit's one because she really had nothing much to offer me). I think it is fantastic you have already decided to work towards getting back to study and doing positive things. This is most important in my view.

You'll get to visit Australia, and wherever else you want - you're young and right now you're going through some setbacks - but I am certain you will be fine in the long run and have many opportunities to pursue your goals and dreams.

Just remember to not make dialysis take control of you. It's your life - it helps you keep it. I get the impression you won't let it do that.

And remember, we're here to help when it all gets a bit much (ie: "emotional wreck" stage (yes, it's normal. Even old men like me wind up there from time to time - but mostly that's when girls turn me down  ).

[KarenInWA]

Hi Samantha,

I also live in WA, just north of Seattle in Bothell.  I am not yet on dialysis, but am teetering on the edge of stage 4/5 CKD.  I was just listed a few days ago at the UW.  I found out about this at age 23, but I was lucky in that mine has been a relatively slow decline (I'm now 37).  I totally understand where you are coming from emotionally, for I have battled with this reality myself.  I can't imagine going through such an abrupt change like you have gone through especially at such a young age. Girl, I feel for you!!!  I applaud your attitude, and taking your life head on after this surprising set-back.  Don't let the disease win!!!  One thing I am trying to do is become all that I can be, all that I want to be, *despite* having this disease.  If I can look at this disease as an excuse to live life to the fullest (when possible) as others who more or less have their health waste away watching tv, or get caught up in doing the same things all the time then maybe this disease, in a weird and twisted way, has given me a gift.  Kind of like how some cancer survivors view their experience.  Cancer gave them a swift kick in the behind to embrace life and all the wonderful things it has to offer.  Maybe those of us who get that swift kick understand something that others don't.  This is how I cope with everything, I try my hardest to put a positive spin on it.  It isn't always easy, but once I get into that state of mind, I feel better.  The challenge is to not fall back down in despair.

RichardMEL is a valuable resource.  He's priceless!

KarenInWA

[RichardMEL]

 

shucks, gals.. please....

Like Queen sang "He's just a man.. "

[paris]

Welcome Samantha, As you can tell, this is an amazing group of people and they are all here to help in any way they can.  This site truly changed my life when I found it.   Richard is our resident "Romeo"!  He is very good for the ego!  He also can give wonderful advice and say just the perfect thing.  There is so much information here.  The support is incredible.  Keep posting. We look forward to learning more about you.  I think you touched all of our hearts with your post.         Welcome to IHD.



paris, Moderator

[galvo]

G'day, Samantha, and .

[sammiejo23]

Samantha (or do you prefer Sam?) - you're most welcome. You totally got the message I was sending - that you have to remember WHO you are and that kidney failure, cancer, dialysis - all of it - does NOT define you. At your core you are still the lovely person who came to College with such hopes and dreams. And I am confident you can still achieve those dreams (certainly studying Social Work). My mother was a chief Social Worker of a major hospital here for a long time, so I have a soft spot for Social Workers (though I pretty much ignored our unit's one because she really had nothing much to offer me). I think it is fantastic you have already decided to work towards getting back to study and doing positive things. This is most important in my view.

You'll get to visit Australia, and wherever else you want - you're young and right now you're going through some setbacks - but I am certain you will be fine in the long run and have many opportunities to pursue your goals and dreams.

Just remember to not make dialysis take control of you. It's your life - it helps you keep it. I get the impression you won't let it do that.

And remember, we're here to help when it all gets a bit much (ie: "emotional wreck" stage (yes, it's normal. Even old men like me wind up there from time to time - but mostly that's when girls turn me down  ).

Richard, I apologize for taking so long to respond! I've been out of town seeing my surgeon for a fistula check up! I do prefer Sam, actually. Samantha is fine too, haha, but Sam is much shorter for typing purposes!

You are so good at reading people, do you do this for a living? Haha.

Thank you so much for your advice, it is seriously helping me out a lot! I've had quite a few good days lately, in large part due to the positivity I've gained from talking with you all. Hahaha. I'm glad to know the emotions are normal, and don't let those silly girls make you cry! They aren't worth it. Haha.

[sammiejo23]

Hi Samantha,

I also live in WA, just north of Seattle in Bothell.  I am not yet on dialysis, but am teetering on the edge of stage 4/5 CKD.  I was just listed a few days ago at the UW.  I found out about this at age 23, but I was lucky in that mine has been a relatively slow decline (I'm now 37).  I totally understand where you are coming from emotionally, for I have battled with this reality myself.  I can't imagine going through such an abrupt change like you have gone through especially at such a young age. Girl, I feel for you!!!  I applaud your attitude, and taking your life head on after this surprising set-back.  Don't let the disease win!!!  One thing I am trying to do is become all that I can be, all that I want to be, *despite* having this disease.  If I can look at this disease as an excuse to live life to the fullest (when possible) as others who more or less have their health waste away watching tv, or get caught up in doing the same things all the time then maybe this disease, in a weird and twisted way, has given me a gift.  Kind of like how some cancer survivors view their experience.  Cancer gave them a swift kick in the behind to embrace life and all the wonderful things it has to offer.  Maybe those of us who get that swift kick understand something that others don't.  This is how I cope with everything, I try my hardest to put a positive spin on it.  It isn't always easy, but once I get into that state of mind, I feel better.  The challenge is to not fall back down in despair.

RichardMEL is a valuable resource.  He's priceless!

KarenInWA

Karen! Hi! It's very nice to speak with another Washingtonian! Haha. I'm sorry to hear that you are beginning to prepare for dialysis, but I am glad that you were able to avoid it for as long as you were able to. I wish we were all that fortunate. Your words are so well spoken, and so very true!!! I have incredibly similar views on the situation, and I definitely agree that in some way...perhaps this has provided us with a sort of gift. And in the end, well, I sure as hell know we'll be much stronger, better people for going through this, especially with the attitude that it sounds like we both have. When will you know when you begin dialysis?

And Richard does seem like a very valuable resource, haha. I'm quite fond of him already!

[sammiejo23]

shucks, gals.. please....

Like Queen sang "He's just a man.. "

Hahaha. Don't be modest, you know you enjoy it!

[sammiejo23]

Welcome Samantha, As you can tell, this is an amazing group of people and they are all here to help in any way they can.  This site truly changed my life when I found it.   Richard is our resident "Romeo"!  He is very good for the ego!  He also can give wonderful advice and say just the perfect thing.  There is so much information here.  The support is incredible.  Keep posting. We look forward to learning more about you.  I think you touched all of our hearts with your post.         Welcome to IHD.



paris, Moderator

Hello there, is it paris? I have a feeling this site is life changing for a lot of people...I know it's already had a really good impact on me. You are all wonderfully friendly, and so willing to help, and things like that make a huge difference. Especially when you're down in the dumps. I'm looking forward to getting to know more about everyone as well. You all seem like you have interesting stories and I can't wait to hear them.

[sammiejo23]

G'day, Samantha, and .

G'day galvo!!! It's nice to "meet" you!!!

[monrein]

  Samantha.  I really wish that you had no need or use for a site like ours...I wish that for all of us in fact but given the boat we're in, this is a great spot for support, information and friendship.
I've been at this a long time myself and it is possible to have a life despite this illness.  It sounds as though you have the determination to make sure that you create the best one possible for yourself.  I look forward to getting to know you through IHD.

[lou]

hi sam, lovely to meet you 

this really is such a lovely website full of great people (as you can prob see from the above guys!) it is crap the reason we are all here but also lovely to know that none of us are alone in this, with people from all around the world going through it.

i really feel this site saved my sanity while coping with being on the dreaded d and i still come on here all the time now just to read about how everyone is doing and im nearly a year since my transplant.

i hope so much things improve for you soon. you have your whole life ahead of you and yes this is a bit of a crappy setback in your plans but i honestly believe you will still have a wonderful life even if it is slightly different from the one you pictured a year ago. you can still achieve your dreams of becoming a social work, travel the world, whatever you want it just means maybe planning things a bit more carefully than other people may have too.

sending a big hug  x x

[edersham]

Hi Sam,

Your story is heartwrenching.  I thought my life changed so fast going from normal kidney function to dialysis in one year. IHD is a daily anchor for me. There is  so much information available here. Be sure to check out the transplant stories section if you haven't already to see if that route is for you. I was very lucky to get a transplant 3 months after starting dialysis and am almost a year post transplant now. It isn't a cure but it can be a miracle.

Best wishes
Ed

[rosa sihombing]

Hi everybody! My name is Samantha, and I am 19 years old. My story started during my first semester of college, when I was finally starting to live life how I wanted to live it; good classes, good professors, good friends and good fun. Everything was going better than I ever could have imagined, up until about the end of October, when I was diagnosed with strep throat. When I went in for that diagnosis, my blood pressure was unusually high and the nurse practitioner at my student's health center was quite concerned. She had me return within a week to see if it by chance it had just been the strep that had made it go so high, and maybe a bit of white coat hypertension, but to her great disliking, it had actually gone higher. I had always been healthy, and this hadn't been a problem ever before; in fact, my check up in August, just before I moved away for school, was completely normal. That was just two months earlier. But before long, I found myself overwhelmed with the task of getting blood work done, the results of which showed that my kidney function wasn't 100% normal.

No big deal, I thought. It can't be that bad. I was placed on medicine to control my high blood pressure and set up an appointment to meet with a nephrologist. The fun of my college days, quickly vanished, because instead of going out on the weekends with my friends and feeling like I could be included, I was stuck in my dorm watching my blood pressure. Making sure it wasn't getting out of control. Instead of being able to focus on my studies, all I could worry about was what was going to happen. Through November and December I underwent a series of CT scans, ultra sounds, biopsies, nephrologist visits and urologist visits. The end results; I would need to have my right kidney removed due to unidentifiable tumors. They couldn't determine if it was cancer or not, but on January 5th, just days shy of 19th birthday, I went under the knife for my right nephrectomy. Initially, the plan was to shave off the tumor and save a partial amount of the kidney, but upon operation, the surgeon realized this was an impossible task and ended up removing the entire organ instead, which we knew had been a possibility before the surgery had even been scheduled.

As it turns out, there were three tumors; all of them cancerous, so it was damn lucky they had taken the entire thing. The part I'm most thankful for? They got all of it, and I was cancer free. As for the left kidney, well, they thought that it would be able to stand on its own. The biopsy had shown a little bit of damage, but they believed it was simply from the high blood pressure going uncontrolled for as long as it did. It wasn't something to be worried about. Until it started to fail. Just 3 weeks following my nephrectomy, as well as a near episode of blacking out, and a while of not feeling so hot, I was back in the hospital having a permacath placed, starting dialysis, and getting my av graft. It all happened faster than I could see it coming, and I still find myself trying to take it in. Wishing it would go away, so that I could have my life back. I had to drop out of college after only a semester. I had to leave the best friends that I had ever made. The education that I longed for. The independence that I had waited my entire life to gain. And now, I am back at home. Forced to live on a machine 3 days a week. Lacking most of that independence. Unable to obtain work at the current time. Stuck sitting at home on the weekends, because who wants to party with a sober sally? And on the other hand, what fun are parties if you can't have fun in the same ways that everyone else is having fun? And let's not mention this renal diet. I can't eat any of the foods I used to eat, but I'm sure you all know all about that, so I won't take up time to rant about it.

I can't stand how quickly my life has had to change, and I can't stand that I never got to have a say in the matter. It isn't fair. And I know life isn't fair, but it's still hard to deal with.

Hi Sam,

Welcome to this site
I understand how you feel right now. Been there too! I had my first dialysis when I was 21, just two weeks after my graduation day  

Yeah, it's hurt to know that we're the younger patient in the whole Renal Unit, but it's better to bring our young spirit to cheer the other patients.

It is hard to know that we're not same like our friends, but do something you like to reduce the pain. I asked my parents to have French course, and believe me, it helps!  

[karrye]

Howdy howdy Sam!

It was a shocker to my system to see such a young person posting.  I am quite sure there are probably younger, but haven't ran into their post yet.  I am a mommie of 2-- 16 daughter and 20 son.  I couldn't imagine if it was either of my children making such a stand as you! As I have often posted, women are a tuff bunch and you are no exception! My husband is the naughty boy on dialysis and the 'eat/drink' attitude (he eats/drinks w/o regard to doctors orders--geesh)...lol

You hang in there, if it is only by a fingernail--oops just don't chip it! It takes time to adjust and I know quite well.  Lee has only started dialysis in the first week of December of 2010 and for the first weeks it has been hair raising to say the least.

Take care in knowing you found  a board full of good folk that will be here for you as they were for me in this 'beginning' time.  So, I pass along my support as much as I can to others that have found their way here.

You are a very beautiful young lady as well--in form and in your mental attitude.  Yes, you will have alot of mood changes and ups and downs, but overall, keep up the positive and take the negative one step at a time.  We will all be with you in our thoughts and prayers.

[Dry-Pack-Babe]

Sigh, sigh, sigh. SammyJo, I'm so sorry that you've been hit with this disease. Of course, I wish none of us had to endure it. . . but. You're so young. And it seems so extraordinarily unfair.

You said you dropped out of school after one semester. Could you resume your studies? I see people doing homework on the machines all the time. Instead of taking a full course load--12 or 15 hours. You could take two classes.

As far as your friends and partying, girl, all I can say is that you may have to party differently. I'm assuming because of your health issues that you can't have mixed drinks. But you can still listen to music. You can still dance and shake your butt. LOL! You can still laugh, joke and flirt and talk trash about people you don't like. LOL.
 
Girl, you could go see your favorite singer in concert.

And you're a young, beautiful girl and you should be out there having fun.

And this disease shouldn't preclude you from doing just that.

I don't know how you feel physically. Maybe all I've suggested isn't feasible. But don't give up because of your illness. Is the social worker at your clinic any good? Some of them aren't.

But if yours is, you could discuss your feelings with him or her. I think you could benefit from discussing the stages of grief, which will give you a better understanding of what you're feeling. And the Serenity Prayer may bring you some comfort.

And I'm sure you have loved ones who care, and please know that you are not in this alone. You have allies on this forum.