I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: goofynina on May 14, 2006, 12:39:26 AM
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This post has been moved to the correct section "Introduce Yourself"
~Rerun, Moderator.
Well hello everyone, My name is Susie (or Goofynina) i am 38, married with no kids and I HATE DIALYSIS!!!! When i came across this message board, i thought to myself, maaaan, these people really know what i'm going through, i dont feel so alone anymore. I think i just may have found my newest best friend (this message board). Here is MY story...
In January of '03 i was told my kidneys were failing. Wha? Who? When? How? NOOOO WAAAAY, not me (so i thought) and i ignored the dr. and thought to myself, he's crazy, thats not happening to me, Well, after ignorning all my symptoms for 8 months (and believe me, there were hella symptoms) lol, I was at the point where i couldnt walk cuz i was toooooo tired, my legs were tooooo swollen and besides, all i wanted was to sleep in a dark room, oh yeah, and in the summer, i was always cold, i would drive around with my windows rolled up and the air off, whew, go figure... It finally got to the point where my mom (we were living with her at the time) threatened me that if i didnt let her take me to the hospital, she was just going to call the ambulance. So I agreed to go see my physician. He took one look at me and said PLEASE, go to the hospital now, he said it was a miracle i lived this long and i might not make it threw the weekend. WOW, talk about scaring the bejeezes out of me!!! So i told my mom to take me to the hospital. Low and behold, i was admitted right then and there and dialysis started immediately. (i was that bad) I was in the hospital for a month until they got my numbers good enough to go home (not to mention the sores i had on the backs of my legs, i couldnt walk or move, ohhh i remember the pain, THE PAIN I SAID!!! I got out in October and that is when i started going to the clinic, the depression, ohhhh maaaaaan, the depression.. it lasted forever it seems, i wasn't able to walk so i had to be wheeled in a wheelchair and then walk with a walker, can you imagine, i was only 36 at the time, what the p*ck? I remember my mom had borrowed a hospital bed from one of her friends and set it up in the living room, there i stayed, day and night, (unless i went to dialysis) UGH THE PAIN!!! I had no appetite and when i did eat, it was only cuz my mom forced me, gotsta eat my protein she said, blah, but anyways, the weight came off pretty quickly, oh, i think i didnt mention that part huh? Well, i am obese, damn i hate that word!!! No one in my family had the same blood type as me so MORE DEPRESSION SUNK IN, but my best friends husband stepped up and said he wanted to be tested, and guess what? YEP, HE MATCHED, sooooo, they had to send us the little kit for him to take to San Fran to do the extensive testing, in the mean time, we all waited with anticipation, We got a call in february that he was a match and it looks like we needed to schedule a transplant (as soon as i reached my goal of 200lbs) p*ck!!! Ok, EYE OF THE TIGER, EYE OF THE TIGER,,,WE CAN DO THIS, RIGHT??? RIGHT!!!! Then, in March, the finance dept called and said my insurance will not pay for a living donor's portion of the surgery, Medicare will cover 80% BUT, i needed to come up with the remaining 20%. And they gave me a figure of $50,000.00. WHAT THE p*ck??? We tried to contact the Kidney Foundation so we can start raising the money and there were so many loop holes, i just didnt want to deal with it, we tried to raise it on our own and start a trust fund, but we were told that we couldnt do that either, all this legal mumbo jumbo...sooooooo, i gave up, i started eating again and now i am back right where i started! p*ck!!! My sister has offerred to pay the 20% YAY, and my friends husband is still ready, willing and able to "stick his organ in me" lol, BUT, i am finding it hard to lose the weight, damn freaken fluids!!!! damn them to hell i say!!!! i was down to 102 kilo's, i know it is still alot but compared to where i am now, that is nothing, I would love to talk about all my troubles, trials and tribulations with being on dialysis, the cramping, the crashing, the clinic, the techs, but for now, i really would love someone to tell me that i can do this, and it is going to get better. Well, i think it has gotten a little better, hopefully i start PD this week and i am sooooo excited, dont know what to expect but i am going to make the best of it, wish me luck,,,,, love to hear from you all
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Hi Goofynina,
Welcome to the site. I moved your posts because they were in the wrong section. This site is so big that we need to keep some order. Also, we have all ages reading this, so please stick to "acronyms".... WTF. Okay, now that I've slapped both hands, I want to welcome you to this site. MAN....... I can relate to not knowing anything about kidney disease and then all of a suddon you are living on a machine. Most people have a couple of years to process the significance of this life changing event.
Please read through the site's topics because a lot of subjects have already been hashed out. Then chime in where you see fit.
Good luck with CAPD, and I hope you can raise the money for a transplant. Infact, you should go to the "Transplant Stories" and talk about the red tape you have gone through.
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Hi Rerun, Thanks for the welcome and i apologize for the bad language, i will remember next time to watch what i say. I look forward to keeping in touch with all of you and let you know how my progress is going and i hope you all do the same with me too. I really look forward to hearing from all of you, whether it be advice or questions or just a simple "hello" I really am glad to be a part of this site. Thanks again....... goofynina
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Hi there, Goofynina! Welcome to our board. I can see that this just the place for you. Take your time and read through the previous posts. We started in August last year (just a month before I needed such a site!) and there is much valuable material that has been posted (along with some good venting!) I do hope that everything goes well with you.
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Hi Goofy! I am glad to hear that you are starting PD. I have been on dialysis for about 10 years and been on PD for 9 of them. My advice to you is to do everything the way you are taught...take no short cuts and you should not have problems with peritonitis.
Good luck with the transplant!
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Hi Goofy! I am glad to hear that you are starting PD. I have been on dialysis for about 10 years and been on PD for 9 of them. My advice to you is to do everything the way you are taught...take no short cuts and you should not have problems with peritonitis.
Good luck with the transplant!
Hey Adrienne, how about making a new thread and introduce yourself, tell us about you.
- Epoman
Owner/Admin
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I sure could have used this site seven and a half years ago when I started dialysis. No information begets an uninformed patient. I had to practically scream at my renal team to give me any information on my diagnosis and treatment. Finally after two call to membership services and a letter to the doctor during my first hospitalization I was given the "Welcome to Dialysis" packets.
What a crock! Get educated on your treatment and be the TEAM leader.
Katherine
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Hey Adrienne, Thank you for the great words of encouragement, i am starting to notice that people on PD are much more happier than the ones on Hemo (ok, maybe not happier but just more accepting), I sure do hope i made the right decision. I know one thing is for sure, i am not going to miss those needles one bit!!! Look forward to hearing from you again and welcome to the site, i am new here and i am loving this site more and more each day,
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Hi, welcome to the board. I'm not a dialysis patient, but I'm married to one. I'd also love to hear more about the transplant process. Welcome again! :)
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Hi Sara, So sorry to hear that your hubby is on dialysis, how long has he been on it? My hubby (and my family) have been such a great support and that is very helpful. I know there were times when i was a real B**** but they stuck by me and let me throw my tantrums, i am better now (dealing with it that is) but the support from my family alone has been a big factor in my getting over this disease and moving on with my life. This site has been wonderful, just reading everything that everyone has to say makes me feel better, whether it be good or bad, i learn from it all. Thank you Epoman, you are ACE in my book...
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This post has been moved to the correct section "Introduce Yourself"
~Rerun, Moderator.
Well hello everyone, My name is Susie (or Goofynina) i am 38, married with no kids and I HATE DIALYSIS!!!! When i came across this message board, i thought to myself, maaaan, these people really know what i'm going through, i dont feel so alone anymore. I think i just may have found my newest best friend (this message board). Here is MY story...
In January of '03 i was told my kidneys were failing. Wha? Who? When? How? NOOOO WAAAAY, not me (so i thought) and i ignored the dr. and thought to myself, he's crazy, thats not happening to me, Well, after ignorning all my symptoms for 8 months (and believe me, there were hella symptoms) lol, I was at the point where i couldnt walk cuz i was toooooo tired, my legs were tooooo swollen and besides, all i wanted was to sleep in a dark room, oh yeah, and in the summer, i was always cold, i would drive around with my windows rolled up and the air off, whew, go figure... It finally got to the point where my mom (we were living with her at the time) threatened me that if i didnt let her take me to the hospital, she was just going to call the ambulance. So I agreed to go see my physician. He took one look at me and said PLEASE, go to the hospital now, he said it was a miracle i lived this long and i might not make it threw the weekend. WOW, talk about scaring the bejeezes out of me!!! So i told my mom to take me to the hospital. Low and behold, i was admitted right then and there and dialysis started immediately. (i was that bad) I was in the hospital for a month until they got my numbers good enough to go home (not to mention the sores i had on the backs of my legs, i couldnt walk or move, ohhh i remember the pain, THE PAIN I SAID!!! I got out in October and that is when i started going to the clinic, the depression, ohhhh maaaaaan, the depression.. it lasted forever it seems, i wasn't able to walk so i had to be wheeled in a wheelchair and then walk with a walker, can you imagine, i was only 36 at the time, what the p*ck? I remember my mom had borrowed a hospital bed from one of her friends and set it up in the living room, there i stayed, day and night, (unless i went to dialysis) UGH THE PAIN!!! I had no appetite and when i did eat, it was only cuz my mom forced me, gotsta eat my protein she said, blah, but anyways, the weight came off pretty quickly, oh, i think i didnt mention that part huh? Well, i am obese, damn i hate that word!!! No one in my family had the same blood type as me so MORE DEPRESSION SUNK IN, but my best friends husband stepped up and said he wanted to be tested, and guess what? YEP, HE MATCHED, sooooo, they had to send us the little kit for him to take to San Fran to do the extensive testing, in the mean time, we all waited with anticipation, We got a call in february that he was a match and it looks like we needed to schedule a transplant (as soon as i reached my goal of 200lbs) p*ck!!! Ok, EYE OF THE TIGER, EYE OF THE TIGER,,,WE CAN DO THIS, RIGHT??? RIGHT!!!! Then, in March, the finance dept called and said my insurance will not pay for a living donor's portion of the surgery, Medicare will cover 80% BUT, i needed to come up with the remaining 20%. And they gave me a figure of $50,000.00. WHAT THE p*ck??? We tried to contact the Kidney Foundation so we can start raising the money and there were so many loop holes, i just didnt want to deal with it, we tried to raise it on our own and start a trust fund, but we were told that we couldnt do that either, all this legal mumbo jumbo...sooooooo, i gave up, i started eating again and now i am back right where i started! p*ck!!! My sister has offerred to pay the 20% YAY, and my friends husband is still ready, willing and able to "stick his organ in me" lol, BUT, i am finding it hard to lose the weight, damn freaken fluids!!!! damn them to hell i say!!!! i was down to 102 kilo's, i know it is still alot but compared to where i am now, that is nothing, I would love to talk about all my troubles, trials and tribulations with being on dialysis, the cramping, the crashing, the clinic, the techs, but for now, i really would love someone to tell me that i can do this, and it is going to get better. Well, i think it has gotten a little better, hopefully i start PD this week and i am sooooo excited, dont know what to expect but i am going to make the best of it, wish me luck,,,,, love to hear from you all
:bump;
>:D
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Just to think, I never welcomed you to the site, so here goes.
Welcome goofynina, good to have you aboard.
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I never had the honor either so here it goes... :welcomesign;
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Thank you guys for the warm welcome :beer1;
*shakes fist at Epoman* darn you Boss for bumping this :P
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Wow, Susie, and I thought I knew you so well ;) - I really didn't know anything at all.
You have been through so much, and I cannot imagine how frustrating it must be to have a willing donor and being unable to go ahead with the surgery because of ridiculous reasons like an unrealistic copay or weight restriction. You would think Medicare would gladly pay for 100% of the transplant surgery since dialysis costs them so much more in the long run... but who ever said it was logical?! (Limiting the antirejection drug coverage to 3 years is just as ridiculous!)
I wish you the best of luck for reaching your goal. In the meantime, it sounds like PD is a good option for you and I know you're an inspiration to those who are currently having to choose their initial modality.
Keep on being the cheerleader here!
DeLana :grouphug;
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:bump;
lol is that what the cool kids are doing now?? :bump;
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Thank you guys for the warm welcome :beer1;
*shakes fist at Epoman* darn you Boss for bumping this :P
I knew the boss would get at you somehow ;D
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I should have deleted you when I had the chance! ;D (Just Kidding) :cuddle;
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:bump; >:D
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goofynina.. I swear I just saw your picture on a milk carton today. >:D ;) Most wanted, don't worry I won't tell anyone. 8)
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goofynina.. I swear I just saw your picture on a milk carton today. >:D ;) Most wanted, don't worry I won't tell anyone. 8)
What the HELL were you doing with a MILK carton!! >:D
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goofynina.. I swear I just saw your picture on a milk carton today. >:D ;) Most wanted, don't worry I won't tell anyone. 8)
What the HELL were you doing with a MILK carton!! >:D
I'll never tell. >:D >:D ;) ;D
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My imagination is running wild!
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>:D >:D :bump; ;D >:D >:D
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OHHHH Great, first Epoman, now you Sluff?? lol, aye yi yi, i just cant win can i :P :popcorn;
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yep, ya see... the bumping in a public place... uh huh
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You know I try and try to come up with something original but Epoman left some big shoes to fill. So I have to copy him once in awhile. :thumbup;
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And you are doing it very well!
Never mind, Goofynina, you know I won't do you any stuff like this. :cuddle;
(but it sure is fun!)
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I am covering my head and lying low!
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:popcorn;
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Geeeze, after reading my very first intro, i've come a long way baby ;) :2thumbsup; and i am going to Keep on Keepin' on and you best believe i am going to Live until i Die ;) :clap;
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Yes, you are awesome! :2thumbsup;
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Hey Susie!! Karol said it all...woman you are AWESOME! I have never met anyone that is so much like me. You make all the trials and tribulations that happen in my life so much easier to bear! :thx; We can and will do this and with your help I know that I will be a better person for it. :cuddle;
Luv Ya,
Earlinda
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Geeeze, after reading my very first intro, i've come a long way baby ;) :2thumbsup; and i am going to Keep on Keepin' on and you best believe i am going to Live until i Die ;) :clap;
Keep on Truckin!! Baby!! :2thumbsup;
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Truckin? i am ready to rent a damn U-Haul to pull this damn body of mine the rest of the way :-\
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Just bumping up the thread to bug Goofynina. So go back and read her very first post on the site! Now she is an administrator! How far we have come!
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Just bumping up the thread to bug Goofynina. So go back and read her very first post on the site! Now she is an administrator! How far we have come!
Yeah but have we moved forward or backwards??? Just kidding Goofynina, you know we love ya.
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Just bumping up the thread to bug Goofynina. So go back and read her very first post on the site! Now she is an administrator! How far we have come!
Yeah but have we moved forward or backwards??? Just kidding Goofynina, you know we love ya.
To be honest, i believe i'm going in circles over here :P lol, but i am loving every minute of it and i am so glad you are all with me every step of the way :2thumbsup;
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You bet we are with you. Can't shake us off now!
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For you people who don't know goofynina very well, your lucky...Jk :) Actually she is one of the greatest people I have never met. I am so glad that Epoman saw the good in this Lady and appointed her to Administrator, I have never worked with such a wonderful person. :thumbup; ok, ok enough with the mushy stuff.. :urcrazy; :)
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thats for sure susie, you are 1 terrific gal! i remember the first...well only time we played together in the "bone yard". man, you about killed me, you are so crazy and i luv ya for it. i'm so hoping i make it to vegas becuz i want to plant my lips on ur "oh so dirty mouth", :o :o :o or would that be fingers!?!?!?!?!
uh whoops, disregard that last statement, that was suppose to stay sealed away inside my head. ;)
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thats for sure susie, you are 1 terrific gal! i remember the first...well only time we played together in the "bone yard". man, you about killed me, you are so crazy and i luv ya for it. i'm so hoping i make it to vegas becuz i want to plant my lips on ur "oh so dirty mouth", :o :o :o or would that be fingers!?!?!?!?!
uh whoops, disregard that last statement, that was suppose to stay sealed away inside my head. ;)
Tubes I hope you know you said that out loud... >:D
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For you people who don't know goofynina very well, your lucky...Jk :) Actually she is one of the greatest people I have never met. I am so glad that Epoman saw the good in this Lady and appointed her to Administrator, I have never worked with such a wonderful person. :thumbup; ok, ok enough with the mushy stuff.. :urcrazy; :)
Aww, thank you so much for the kind words Sluff, the feeling is mutual my friend ;) :secret;(ok, now how much do i owe you for saying these nice things? i forgot on the amount you quoted me) :P
thats for sure susie, you are 1 terrific gal! i remember the first...well only time we played together in the "bone yard". man, you about killed me, you are so crazy and i luv ya for it. i'm so hoping i make it to vegas becuz i want to plant my lips on ur "oh so dirty mouth", :o :o :o or would that be fingers!?!?!?!?!
uh whoops, disregard that last statement, that was suppose to stay sealed away inside my head. ;)
Woohoooo, Tubes, you better be going cuz i am making EVERY effort i can to get there NOW that i read this, lol ;) ;) *reminder to self* pack the extra handcuffs!!! 8)
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What happens in Vegas stays in Vegas? HA! I have a camera!
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What happens in Vegas stays in Vegas? HA! I have a camera!
Camera?? Camera?? Noooo, i want VIDEO :bandance;
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Video? Didn't the cops say last time that the videos would be confiscated last time you came home from Vegas! SHHH!
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What happens in Vegas stays in Vegas? HA! I have a camera!
Camera?? Camera?? Noooo, i want VIDEO :bandance;
then video u shall have, anything for the queen. :bow; :bandance;
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Video? Didn't the cops say last time that the videos would be confiscated last time you came home from Vegas! SHHH!
Yeah, but i found out they were using them as instructional tapes, ;) ;)
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I was reading this and thinking of Susie. What a gal! :angel;
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Thanks for bringing this back to the top... I had never read her intro. Wow. Just wow.
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I thought about bumping this thread. Epoman used to do it every now and then, then Sluff used to do it as well. thanks, Romona! what a girl my Susie is! As she said "I will live until I die", and she did just that. So full of life!!
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Susie,
It was so nice to know you. I'm just glad I had the oppportunity.
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:bump;
Just missing you. Hope you are watching all of this from up there and having a laugh.
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Thanks for bumping this - made me laugh too - missing you Goofynina. :-*
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Missing her too! :'(
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I laughed and then I started crying. Between re-reading Epomans posts and now Susie's -- I am an emotional wreck today. :'(
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I remember when she was new.... I was Moderator and had to PM her to tell her to watch her language!
:rofl;
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Laughing and crying and laughing and crying and laughing.....
I miss my girlfriend so bad!!!
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i thought of her today and now i come across this post. i'm sitting here in tears............
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:waving; Hi Goofy
You are so missed. xox
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She was listed as a friend on facebook, and when I send things its still has goofy....
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I know, and I find it hard to delete her email, etc., from my contacts. Am I being silly?
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She's still in my facebook, myspace, I kept all her PM's and even her mom's voice mail from the hospital. I cannot delete her.
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I miss you Babe. Every time I hear your song I pray for you!
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G :-* :-* FYNINA
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What a wonderful world.............
She is missed. :'(
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Happy Valentines Day. Bittersweet, but always thinking of you.
:angel;
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She is always in my heart. Goofynina and IHD changed my life. Meinuk is right --- bittersweet. :cuddle;
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And another year passes. A lot of good has come to many friends here at IHD since Susie's passing. I just wish there was some way to have helped her when she needed it.