Nearly Christmas

Christmas is just around the corner. forgive me for not writing often. I started out blogging so well :p but life just seem repetitive and pointless sometimes to write everyday, when everyday day seems like deja vu, get up and pop meds, check blood pressure, nap, awake, more meds, more blood pressure, more meds, maybe a lil stomach sickness or head ache, dialysis 3 times a week.....o wait thats changed, I go four times a week now.....so its a bit repetitive.......I think that would bore people if i wrote the same thing everyday...lol like that movie Groundhog Day. 
My blood pressure has  continued to stay elevated both the diastolic and systolic numbers. They think maybe I'm hiding fluid somewhere in my body....not sure where its hiding lol considering I'm only 80 lbs lol. So they started me going four times a week to dialysis to maybe pull of the extra fluid in hopes to help lower the blood pressure.


My pup finally flew from Kentucky a few weeks ago :D shes grown so much since I last saw here. I missed her so much.<3<3<3<3


One of my aunts is still in the running to be my donor, so I'm hopeful things work out, and soon.


My friend Jason moved away, and he didn't even say Goodbye .....yet another person showing their colors.....




I got all my Christmas shopping done, yay me :p course it was easy, I only shopped for mom,dad,brother and best friend, and two my lil cousins.


Well its getting late, time to snuggle into bed with the dogs and try and stay warm. 


Much love to all

My Apologies

Urg been a few months I know, sorry. Lifes been just one big question mark sitting on a iceberg. Had a birthday a few months ago, that was cool I survived another year :P My pup is still miles away, but soon, in the next weeks she will be reunited with me. Trying to get this blood pressure under control still, now up to five meds. And the dosages all upped. Stilll get sick from the lobatelol, hoping to be off that one soon, cause I cant take anymore of running to the toilet after consuming it.
No words on transplant yet, they are taking forever to do testing eeek!
Been  kinda lonely lately, friends kinda forgettin me, just because Im sick........
urg my head hurts...Im at dialysis........................ill talk later. nothin exciting anyway :P

Lemons

Sorry been very blah lately, no other way to put it, just happy I'm alive, but sad because majority of friends have deserted me, and It gets old being alone. Been sleeping way too much ,just cuz  theres nothing else to do. Celebrated my birthday a few weeks ago yay I made it another year lol. Was nice to have cake and coffee with mom and dad. Anyway, Ill write mote when I feel it. Sorry its been so long, there just nothing to report.

Friends these days

Friend:

1. a person attached to another by feelings of affection orpersonal regard.

2.a person who gives assistance; patron; supporter

Real friends are rare in this day and age, people only look at people as to what they can get out of that person. 

I think I can sadly say that I only have very small handful of true friends, I have many people who like to have fun and be there when all is fun and games.

Sad to say that if I died tomorrow a very small amount of people would notice because people let time go by . If people dont need something than why call your friends. And when something really serious happens thats when people flee hte scene, why hang around, To much reality to deal with. People want fun and material, fake. 

My parents keep stresssin to me, how I have nobody except them. And it hurts to hear them tell me that, but in reality the are right. My husband proved it,no ones gona stick around to see my life through. 

Friends are a rare word these days. I would go to the ends of the earth for people, make stupid cookies just because, take a millions buses just to see you for no reason, send a hand written letter. So many reasons, that dont involve wanting something in return except your friendship. 

That is rare these days, I feel stupid acting like that, but thats just the type of person I am. I could be doing a milllion things and still make a moment for you.

This isnt to any one person, its just a general fact.  

The scariest moment of my life, April 2011 Kentucky when I was in the hospital when all this sickness started again. I was paralyszed on my entire right side, and my neighbors so called friends just dropped me off and never checked back. There was one night I reallly wanted to kill myself. I was alone in this hospital, unable to speak or move, my parents and husband unknowing to where I was. That was the lowest moment of my life, alone unable to speak and I could have died there and no one would have known. To make it worse the nurses were so terriably rude and hurtful even more so cuz they knew I was alone and uncapeable to answer for myself, as they held me down, screaming with alll my might tears gushing ans they put a tube down my nose. The worse moment of my life. I seriously wanted to kill myself. What nice friends they were just left me, after I took care of all of their children like they were my own, and more. 

And then that moment when my husband saw me on lifesupport unable to communicate except for blinking my eyes, and he told my mother make her your problem now. 

People suck sometimes.

People dont know how to be friends.  Ya people are nice and all but theres a difference between a nice person and a friend. 

25

So my birthday is around the corner. I havnt written lately cuz life i kinda dull right now :P but dull is a good thing, cuz that means no complications. Have one person in donor process, hopefully they are a match :D

Burr

Burr Fall is officially here, been pouring rain like crazy, time to bering out the warmer clothes :P Dialysis days got changed, due to not enough people on the days I went. Got a few people in process for donor testing :).
Had  a doc appointment, finally decided to give me something to help me sleep, yay, and slept good last night with no problem.  Feeling icky this morning, urg Labetlol, I never know when its gonna make me feel icky. Most days it doesn't make me feel sick, other days im nauseous and vomiting all morning. :(
It willl wear off by the afternoon hopefully.

New day

So they moved my dialysis days :P even though i know all the nurses it still feels weird since majority of the patients are different.  Its more packed on the new days i go. More coughy germy people :X
Urg Im sleep already, but cant sleep because my blood pressure is to high so no reclining my chair for sleep time. Sittttin up right is not a comfy to take a nap. Seo sleepy the meds and the machine all makin me sleepy :P urg I cant even type I'm just urg tired. I fell so blah latley.Kinda down and just blah, spending too much time alone at home, sleeping the days away, while everyone forgets me.

6-8 years

So I had a few people who said they would test for donating, I'm not sure if anyone has called yet, the nurse cant tell me, for privacy reasons.Only the person can tell me whether they called or not......only one person told me so far and she been denyied by the doc for medical reasons. I really hope maybe more people will step up to be tested. Without willing people the wait list for a cadaver kidney is 6 to 8 years waiting list. And I duno if i could handle 6 to 8 more years of dialysis. 

The donor processs takes a while for testing so you cant like say I'll call tomorrow over and over. theres an interview, then blood work and it goes on step by step.You dont even have to live in my area, you could be miles away. And like I said even if people dont think they are NOT compatiable, the doctors are doin incrediable things to make transplnat happen for a many people as they can. 

Everyone is born with two kidneys but you only need one to function in daily life.  And nowdays this surgery is prefected the scar in tiny, the healing process is a week or so.  My mother and father cant be tested due to the fact that my mother already gave me one 11 years ago, and my father is a kidney recipient so he only has one. 

Im not tryin to seam like im begging or complaining. Im just trying to open peoples eyes. I just dont anyone in my household who can, so I have to ask else where. I dont want to be stuck on dialysis 3 days a week for hours gettin the energy sucked out of me, to clean my blood. I dont wanna sleep the days away, and lose more friends, because people dont wanna deal with someone who has this stuff in her life. I want to be able to go to job interviews and have people not turn me down because they are not sure we are a "compatiable match." I want to be able to eat my favorite foods without feeling like im going to vomit afterwards. 

People everyday in life tell themselves, I would donte, and put that dot on their license in case they dont make it out of a crash or something.

What if you could make a difference while your still alive? What if it was you goin through all this, what would you do? 

There are 112,283 people in the United State alone waiting for a kidney.

Somedays it feels hopless and down

Sunday Morning

Good Morning, its sunday, and I actually slept in today :) 7 am thats sleeping in :p. So last night was my last Saturday dialysis. They are changing my schdeule due to not enough patients on the same schedule as mine. Got my flu shot yesterday too.

So I have that chest cath for dialysis, seems like I'm the only patient in favor of that, many would rather have the arm fistula not me. eeks

Urg I have a lot of laundry sorting to do today, its really buggin my right now. Im gonna go and Ill talk laters :P

Ramble

So havent written in awhile. Reallly haven't had anything to say. Same ol thing everyday, most days. Gets really old fast. Get up take meds clean house, play with dogs, use computer more cleaning, some time cook, some dialysis, watch tv, more med. Thats most day o dont forget naps and insomnia :P lol thats most day. I like the simpleness and quiet most days. Most my  friends have busy lives so they arnt around too much, but most them check on me through phone and email. Im also tryin to stay as healthy as possible, because Im immune system is really low. So its easier for me to catch germs. I used to go to alot of local band shows, lot my friends are local band peoples, so I used to be out all hours hanging out at shows, and hanging out after with my friends, traveling as far as four hours to see them. I cant reallly do that right now, to crowded and full of germs. But I do out every once and awhile to dinner and the mall , coffee shops. Im just more cautious. Also my way to get around on my own is a lil more limited during the day, I dont drive and I dont have a car even if i did drive. LOL I know how to drive, Im just terrified of driving so I use the bus, taxi, train. and the bus system i know has tons of germs llol all the different people from all walks of life that take the bus, I cant even imagine the germs lol.

Urg I better go, Ill write more later tonight. its a dialysis night :P

Sleeping Beauty Overload:P

So I'v talked in the past about my insane insomnia, for instance like now lol its 3am. And I'm not even a wink tired AH! that's so annoying! And actually tonight is the first night in awhile that I have had trouble sleeping. I duno these last couple days have gone by like a dream. Iv been so tired during the day. And its not cause I'm not getting sleep. 
Its not like a sleepy tired, its just plain drained and weak tired. Iv been doing so well with dialysis and energy the past six months. These last couple days I cant even sit down without fallin asleep. LOL I don't even know Iv fallen asleep, and when I wake I don't know if its been two hours or 2 mins. And sometimes it it has been two hours haha. Part of it  I'm thinkable is the heat, these past few days we have had a lil bit of a heat wave, so heat plus sick person whos already petite and now under weight, maybe doesn't make a good combo? I duno that's just my guess.  And on top of that dialysis has been taking off more fluid than usual, not there is really anything to pull of but they are really stretching it. So I  feel like sleeping beauty stuck in a sleeping spell. :P Just gotta figure out what changed to trigger this sleeping spell. Like I said its not that I feel tired, well not at first. Just weak, but then as I take nap after nap through the day that makes me sleepier. Its only been that way the last 3 days or so, so hopefully my body will snap out of it.  


As for dialysis, like I said they are starting to tryin and pull more fluid. They are really tryin, I can tell, lol cause now I get cramps towards the end of treatment. Not major cramps but enough to bug me. And so I have a dialysis chest catheter for my treatment. Theres different types of ways to do treatment, the chest cath is usually for short term people who will eventually get a kidney. And then theres other things like arm fistulas that are more for long term, years of treatment. So the doc officially decided that I dont need an arm fistula. Thank God for that, I don't want one those, that scared me more than have tubes stick out of my chest. Theres quite a bit of people who say they would rather have the arm access, not me.  Ya chest cath makes it a lil difficult bathing, and thats one the biggest reasons say they dont like chest caths. Ya so you have to bath with the water right about at your belly button level. Wit the Catherine all bandaged up so it doesn't get wet, then upper half of the body that cant get wet I have to sponge bath, and lastly I wash my hair in the sink. Urg, ya its seems like an ordeal, and that because the catheter is connected directly to my heart. If bacteria was to get in the tubes and start growing that would be no good, direct line to my heart  hello thats no good.  So I don't mind, just as long as I dont have to get an arm fistula. If you have that you have to get needle pokes every dialysis treatment, And that is so not for me. Well sleeping beauty is going to attempt to rest. 
Good night and Good morning :P

A Midnight Ramble

Its ten minutes after midnight. So I'm feeling much better after a good amount of fluids through the day, and eating a full meal at dinner. Some days those blood pressure meds can kick my butt. Thankfully not very often. Any who, so hmm yes I mentioned Im on the list :), now I have family and friends who will hopefully call in and we can get this stuff going.

So very very exciting news, so my lil puppy that my husband and I had, I sadly had to leave her in Tennessee with some friends until I could find a way to fly her to California. How I miss my lil pup.Shes everything to me from TN/KY shes was prolly the best thing from my last two and half years. My husband and I searched and searched petfinder.com for a puppy for me as a companion, because he would be deploying very soon. Omg when I saw my lil Lily I just had to have her. My husband drove us almost 5 hours to go get her from a shelter. It was meant to be, because the minute I opened that shelter door she came running into my arms. her and I we so strongly bonded. The last two years she has been with my almost 24-7.

When I got sick, that week or so in the hospital had been the longest her and I had been apart. And I was devastated that having to leave to California, would mean that I couldn't be with her. And I tried to bring her on the plane with me, but she was too big :( 

But I promised my Lily that I would not forget her and bring her home to me when I could get the money to. Finally that time has come.

Its like a mother apart from her baby, lol. Hey don't laugh. Shes not just a dog shes a part of my family. And a gift from God, because without her, I would prolly have had a lonely life alone. I cant wait to snuggle and give you lots of lil doggie kisses. <3

Life has topsy turvied a millions times over and over. It hurts to think about the life Iv lead. It makes me cry to think about a person dyin on life support, alone so scared and unknowing if anyone knew she was hurt. She thought she would die in that bed and not get to see her loved ones ever again. It hurts to think about someone being in that situations, it makes me cry even at this moment, to imagine someone being like that, all her neighborhood friends dropped her at the hospital and didn't care to see if she lived through the night. You know I;m very positive about my life, and all Iv been through really doesnt bother me. But then when I think about it as just a person, it breaks my heart. It doesn't bother me that I have to deal with all these challenges in life. 

I just get scared, thinking about that woman dying in that bed. And no one cared enough to stick around, except her mother who flew miles to see her. This woman's own husband, couldn't even stand by her, even after a vow of death do us part. So it scares me to think, will I ever find someone whose not blood, who really will ever take anything near that vows to heart.  People are not as strong as me, and you know I probably will never meet someone who is. But I know God is gonna challenge me on that :P Hes gona put someone so strong in my path, that I wont be able to break away. I just don't believe God yet lol. 

People ask how can I be okay with a person I vowed my love and life to, leaving me at the moment I needed him the most. Well, if he left me to die, then why do I want him in my life anyway.  I dont. I survived. And he was to much of  a coward to endure this journey. I dont have time to wonder why, all I know is that non of it was my fault, and I am not to blame. That I had a life to fight for. And my health to worry about and no time to wonder why he couldn't be everything he was suppose to be. Im a beautiful woman inside and out. Maybe a mess lol, but a beautiful one haha. And he wasn't man enough to stick by. So I guess I got to work extra hard from now on to weed out the men from the boys. Have to bring out tests of ultimate strength, Million questionnaire tests, lie detectors, set the dogs on them LOL :P If your gonnna stick with me be prepared to be unprepared lol. I warn people, but guess people dont believe me. 

To me all this makes me stronger, thats a beautiful quality in me I think. Without all these life experiences, I do not know what type of person I would be, well Id probably be a person who takes life for granted, and lack self esteem. Im beautiful because of all of this, every scar and bruise has a story to remember and tell. <3

Sick day

Feeling siick today.
One the blood pressure meds labetalol. Its a tricky med,have to eat with it, but never can tell if you hafeve to eat right after you eat it or right before, cuz sometimes even when I eat I still get sick. Like today ate a whole bowl of cereal, and still ended up running to the bathroom puking my guts out. :( Gave me a headache and stomach had been uneasy feelin all day. So taking it easy alll day.

Its been awhile

Hello, wow I have not written in a few days, sorry bout that, Iv been really tired, and no energy for much of anything on top of drama, thats off and on. But thats life ya know :P
Anywho, So inbetween my sleepyness, then I did have energy I used all that energy to the last drop lol. I finally went and saw the last Harry Potter movie with my folks, omg was the best of all the movies, emotional but wonderfully made movie. We had dinner at Red Lobster yum, thought out my meal and liquid with a lil cheating and smart choice thinking. For instance dark sodas like Coke and stuff are the bad choice, Sprite or ice teas kinda drinks are better. So I had an ice tea, with shrimp and lobster tail. YUM I finished every last bite. You'd have thought I hadn't eaten for days haha.
And just a note, I have had a few people tell me my blog portrays lies, because I can not be that happy or confident with myself and my situation. Well truth is, yes I do have my down moments, but I do not let them run my life. I take all the negatives and change them into a positive. I tell life how it is, and go on. Urg Im fallin asleep at hte keyboard haha. Thats a sign to stop lol.
Dialysis tomorro. O!O!O quick note Friday the nurse called I am officially now on the transplant list :D\
ok Im tired, nite nite

I made it through today

I have not really had any inspiring thoughts or exciting moments to talk about lately :P Fact is life is what it is, you can either except what life had faced you with with a positive outlook or not. Either way you will have to face it. Its your own choice how you perceive it, and how you look at it might actually improve your situation or not.
I do not know how many times the doctors have told my family she is not going to live, and I always pull through and shock the doctors.And yes partly it has to do with the medical team and their hope that a certain treatment or drug revive me. But I think my will to beat all odd and my positive attitude helped me overcome death.
You would never know by looking at me that 5 months ago I was on life support and the docs there had lil hope.
Feeling sorry for myself is not goin to do any good for me, if your emotionally unhealthy, that effects you physically.  You have to think "hey today was a good day, cant wait to see what tomorrow brings. "  Girls put on your lip-gloss and feel cute even in sweats and flip flops :P
You gotta think happy thoughts, cuz if you live everyday feeling sorry and hating things, your gonna look back and see all those day of wallowing you could have been living life.

Im 24 and have two major life conditions, one which is genetic and I have a sibling who could be my identical twin in terms of medical issues but hes three years younger, and I watched him go through his journeys after me. I watched my father fight cancer, and win. All these life challenges within my home, and we all fought the odds, because we live with positive attitudes as sense of humor and lots of love, in addition to the wonderful medial team who stood by us through life.

Hope you have a beautiful day where ever you are <3

‎"Nothing is impossible, the word itself says 'I'm possible'!" 
-Audrey Hepburn

Food for thought :P

So I saw this cartoon and thought it was funny. Gotta have a sense of humor about life's situations. Renal diet does suck indeed, but you dont have to be strict, IF you are someone who has self control. If you have selfcontrol there is always room for a lil cheating. :) If you really want that milkshake, have it, but have it on dialysis day :) enjoy a lil of your fav foods is ok, just dont go overboard.
If I didnt cheat a little I think I would starve, with moderation and the phosphorus binders, and dialysis things should be A-ok :P

Chair Time

So here I am sittin in dialysis, thankfully Im only set for 2.5 hours. Got  wi-fi and my laptop, and dads sitting here with me. So time goes fast. So last few days whats been up. hmm. So Thursday I had a kidney doc appt, she adjusted my blood pressure meds a bit cause my blood pressure is still running high. Its gotten as high as 170 on the top number..no bueno. Thats stroke level. So doc upped the meds a bit, and my phosphorus was high in my last lab, eatin a lil too much dairy my bad :(.  So high phosphorus in renal failure paitients is bad, the kidneys cannot remove phosphorus very well. High phosphorus levels can cause damage to your body. Extra phosphorus causes body changes that pull calcium out of your bones, making them weak. High phosphorus and calcium levels also lead to dangerous calcium deposits in blood vessels, lungs, eyes, and heart. So mine was a little on the high side this last lab check so the doc put me on phosphate binders the  medicine will help control the amount of phosphorus your body absorbs from the foods you eat.  So that should help keep my phosphorus levels in check. So that was that, and then run and grab so fast food, cheat the diet a lil :P, and hurry off to dialysis. So just hung with mom for a Thursday night of dialsysis. And my wonderful friend Jason, came to dialysis in the last 15min or so, and then he and I scurried off to hang out by then it was like 9, so yea day was already pretty long, but dialysis cant tire me out :P. We hurried of to do a bunch of nothing, it was just nice to hang out with a friend doing a bunch of nothing watchin lame late night tv. 
I definitely knocked out that night cuz I hadnt napped all day haha. I usually nap 45 around lunchtime. Friday was a sleep in day, and quiet calm boring day, nothing out of hte ordinary the blood pressure is still getting under control but they just changed the meds so cant expect it to change over night. Nothing else much on Friday....now Friday night....was one those insomnia nights urg! Seriously it came 5:30 a.m and the Rocky my dog was ready to wake up and go outside. I finally dozed off on the couch this morning at around 7-9a.m lol. So Im running on no sleep but doin pretty goood :P I guess I'm just that happy and full of sunshine that it never lets me sleep :P jk.  
And so now here I am once again the famous chair, all this writing, now i'v got an hour and half left to go.  So I duno how many people read my blog, I feel like Im writing to space haha. So if ur read lemme know :P 


Its so dark outside and its only 7:40 at night. Gave  myself a manicure earlier, and sittin here listentin to some Katy Perry.  Feeling really good, not tired or sick, good job dialysis :). I'm not even really retaining fluid, well not enough to pulll it off. Least not today. But my pee output has gotten less and less. I know sound weird doest it? No peeing! Well the kidneys regulate ur fluid and make you pee and take all the toxins out of your body. So no kidney workin, no pee or very little. especially since I'm on dialysis, that i guess confuses the body, cuz dialysis takes the place of the kidney, so slowly as I stay on dialysis weeks and months, the kidney doesnt produce urine, but I still feel the urge to pee, but nothin, now that sucks :(. 


Hmm not much else to say at the moment, just love yourself, and others will love you, and if they dont, you dont need them. Life is extraordinary and you got way more in your path to dwell on negative things. 


God must have so bigger reason why he has done these things to me. He makes me stronger. <33




"I'm beautiful in my own way, God makes no mistakes" - Lady Gaga

Shortly :P

Sorry for not posting lately, been a lil crazy, but Ill be writing tonight in dialysis, so stay tuned :p

Friend Test

So not much going on today, took a nice hour morning nap lol. That usually happens, if I take some the morning blood pressure meds, that's ok bout a 45 min nap then I'm refreshed an ready to get back to my day...lol not that I have much to do in my day. On the hunt for a job atm, and cleaning house before the folks come home from work, that's the only way I can pitch in right now.
Anyhow so friends............we all think we have a good amount of friends right? You go out and party with them and go to dinners, and have lots of fun in big groups, and they are all ready to call or hang out when its time to party. Right?  Well the true friend test comes when something serious happens.

Such as say waiting for a new kidney, and being on dialysis. You really learn who loves YOU, and who loves the fun persona you carry.
The texting stops, the phone calls quit. Its really superficial, and I'm not saying everyone is like that. But quite a big number, and  even people you didn't think would be like that would surprise you. People get scared. Scared to see their friend go through such an ordeal that they never imagined to see them in, and would rather pretend they don't exist until they are better. Or maybe they get the hee-bee-gee-bees from seeing needles and blood.  I mean look at my husband, he knew two years ago about all my medical conditions, and that anything can happen. Guess he didnt believe me, accused me lying to him. And said he couldn't handle all I turned out to be about, course he didnt say it that nicely but non the less, he wasn't strong enough or man enough to go through this with me.
People handle sudden crisis like these in different ways. And like I said you learn who cares about you enough to be there for you, or pick up the phone every so often and check on them.
Its human nature to be scared for people you care about, but to run from it when they cant is just coward.
Or the people who blame and get mad at you for getting sick, well geeez how was I to know this would happen. Sorryy! get over yourself!
I've learned to deal with peoples reactions to my life, I'm not sayin I live sick all the time LOL, just that I've learned not be surprised what life throws at you.
People have walked away all time throughout my life, surprising what fear makes people do. I remember the last time i went through transplant, 13 years old a freshman in high school and i called my so called best friend to tell her what was goin on, she said "let me call you right back".....lol uhhh still havent gotten that phone call, lol. At 13 that hurts a young girl. Now being 24, I understand more that people have different ways of reacting, and you stick with the ones who stay by you through everything, and cant dwell on the ones who left you.
And I have that, my numerous amount of family that stick by me. And my very close best friend, shes like my sister. Shes prolly laughing at me right now if shes reading this, because I'm the mushy writer and shes not :P. We have been friends for 12 years, and not even kidding we have bee there through everything for each other. We both are kidney transplants, both transplanted at the same hospital, who happen to go to the same school in the same grade! I mean how more kismet could it have been lol.
Slowly other friends will maybe get over their phobias or feelings.And I'll meet a man, not a boy whose strong and can stand by me through EVERYTHING life throws.

I love myself and if people cant love me as an entirety tragedies included, then they can shove off. I'm too vibrant and alive even with dialysis, and a failing kidney. Iv got so much love and happiness to give that i cant dwell on the people who only dwell on my illness. My illness is only a chapter of my life.
So if you love my friendship dont leave me <3
But if you do its your losss :P

Sunshine & Happiness to all <3 until laters

What a way to make someone depressed if you never were :P

So woke up at 6a.m as usually for blood pressure reading. And the magic number this morning was 140/100  blood pressure reading, getting high better take some labetalol, yuck thats the nastiest medicine I take right now, makes my  stomach icky, and I taste it all the way up to nose and it make me sneeze like crazy ug, but its one the ones that sees to bring it down. 140/100 is actually not that high for me, its beeen up in the 180s bleh. I check my blood pressure usually every two hours. Its noon now sitting eatin some lunch and listenin to my beloved My Chemical Romance, O how I love you Gerard Way hahah.
Blood pressure is now at 126/90.

So yesterday I had my big evaluation with the social worker, the doctor and the transplant nurse. The social worker came in with this list of lame questions, first general  who do you live with, are you married, children, medical history stuff. Then asks if we could talk in private since I had brought my mother with me. And so i was like I really don't care, whatever, I have nothing to hide. But the social worker insisted we speak alone. As soon as she led my mom out her first question was "is anyone forcing you to go through transplant process?"  i kinda laughed and told her "no" and then she asked "why do you want this?" I told her because I dont wanna be stuck on dialysis forever, thats no way to live. I got alot in life to do, then sit and sleep my life away in a dialysis chair." She kinda sat their stunned, and smiled "Iv never had a such a confident response before"  I laughed again "Iv been through transplant once before, I'm ready, so lets just do it ."
All the social workers questions were so negative, you would think she was sent in there to make me depressed. "Are you sad or upset because your on dialysis, and  your husband left you." lol geez lady, If I wasn't as confident am, I would have killed myself right there LOL.
So that was the social worker,. she just  wanted to make sure I wasn't a mental risk I guess, but still she was so negative couldn't ask questions in better way? I mean I get that she the social worker and she just doing her job. Making sure I'm emotionally stable to pursue this, but I respectfully think they could ask their questions in more positive nature.
Next came in the doctor, hes my docotor so hes awesome, and he thought the visit was pointless anyway haha cause he knows I'm ready, and because I have all those potential donors. So he just asked how I was feeling, I told him excellent I ran a four mile race two weeks ago." hahaha omg the look on his face was like uhhhh wtf, hahah  Then he did his little check up, and then the nurse came in, showed me way if I didn't have a donor. I was like i got 7 people who wanna be tested and maybe still more."  That was that, she sent me for more lab work and I was on my way. With the rest of my day :) Next week they alll gather and go over how they all felt about me, and decide if I'm a good candidate for the Transplant list. I got this I know it :PS


I might write more tonight, who knows. Its a dialysis night, so two and half hours to kill with mom. Love and LOTS of happy thoughts to all. Have a great rest of the day


"Nothing is impossible, the word itself says 'I'm possible'!" 
— Audrey Hepburn

The Big Evaluation

So Today's agenda….Its Monday not a dialysis day, yay for that :P. But I do have to see the doctor today. Its an important meeting.

Evaluation day the Doctor, transplant coordinator, and social worker; will I guess interview me, and figure out if I’m a good candidate to be put on the Transplant Waiting list…..which I’m sure I will be. No doubt, I got enough spunk and positive energy, and love, and people who are willing and ready to donate. SO who better to put on the list :P 

They evaluate people to see if they should be put on the list, because some people already have a sore attitude about their situation, and the doctors dont want to risk giving people new kidneys if they are just gona be negative about it and not take their medications and such, or some people have multiple health problems and doing this surgery is a risk, and some people are too old. So now they do evaluations of every patient. Something new that I didnt go through when I went through transplant last time.  Transplantation knowledge has grown since I was transplanted. They have so many new ways to help people get transplants. 

The active waiting list is huge 72,395.  

Not everyone has people willing to donate like I do. I have at least six people who want to be tested. Some people dont even have one. And even with the people who do have a willing donor, if you dont have a match, they have like a organ trade, where if someone else has a donor that doesnt match them but matches you and your donor matches them, you could do a donor swap, so then everyone gets what they need :) Docs are really getting smart thinking like that now, theres even a last resort process if ur donor isnt a match called desensitization, its so crazy. Well its bout that time, I gotta head out to me with the eval team :P 

Ill fill you all in later.  Much love and have a happy sunshine day, cuz indeed thats what everyday is.  <3

Insomnia

So its like almot 1AM...I guess its an insomnia night....the dialysis makes my body chemistry imbalanced or something, I read in one my kidney Q&A books. So on very many occasional night I will b up until the next morning. Its quite annoying.Being awake and fidgety and it being so quiet. So thought Id post on random odds and ends that had been running though my head.....Running thats a good one.......*O! so you think dialysis and kidney failure makes you so ill and feeble, that your just suppose to stay home and veg on the couch all day and act like your dyin. That’s so not true. I just ran/walked a 4 mile race two weekends ago. So hows that for sick and dyin? Huh? …Ok yes thers up and down days, but most days I’m up and awake and lively J So just a food for thought. Even being sick living life does not end..

Note: Also..if  you have kidney failure, means your kidneys aren’t working, means all the liquid you drink stays in your body because you don’t pee or pee very little, embarrassing to say…but true fact… anywho ….SO it was fairly warm this weekend…and I indulged in drinking a little to much iced tea….bad idea….gota watch my liquid intake a little more…my feet are beginning to swell, and I have another whole day without dialysis so gotta watch my liquids very close until Tuesday night L ……things happen…bad me. I feel so normal I sometimes forget that I cant drink iced cold tea to no end….ok then……mental note that I remember that. Ill just look down and see my huge swollen lil toes ……:P …OK so I will prolly write more later today when its atualllly time to be awake.


Good night, Im gonna see if my mind will stop screamin and be quiet enough for me to sleep for a little bit.....fingers crossed I fall.

So Just a quick blurb

SO yesterday was dialysis day, all my blood levels looks good. Keeping good with the low sodium/phophus/ potassium diet :)
Havnt heard from the soon ex husband. So that makes life much easier and simpler. My hairs in need of another dye job :P and I got the fam and Justine, how ever far shes still there. And maybe who knows more friends will reach out who are closer.
Sorry about that last post. Some my friends told me I should start a blog about this whole experience. You know help people who may be on dialysis, or kidney related people. or people who just might be interested in how crazy my life has gotten, cuz their lives arent merely as unbelievable as mine lol. So I had alot to catch the bloggers on to understand. <3  Hope everyone had a great weekend...mine was A-ok for now I guess I could say. Didnt do anything except a trip to dialysis, the lame life I lead lol.

Ketchup-The Longest Post I have Ever Written-

So here I am been four months now since I have been on hemo-dialysis. Back to waiting, back to sleeping time away, back to almost feeling helpless, back to testing people of their true friendship and love.  …

    Ah love the big factor of every conflict no matter what the problem started out as, love is always takes part in a problem. So just a quick fact two years ago I got married to the suppose man (I used that word loosely and youll find out why in a lil bit.) Anyhow, he’s a military man, who I respected for that and I loved truly for all he was, I am from CA, and he had been placed in KY. We were for the most part happily married, so I leave everyone to believe minus for this moment…

Until recently, April 2011,  I was living at our house on post taking care of our beautiful 1 year old pup, as well as temporality had custody of 3 military children whose parents were both deployed military, while my husband was deployed.  April was one month until my husband was supposed to return home, so exciting in happy way. Well one week in April the storms were so bad in our home location on base, three nights of tornado warnings and hiding in bathtubs with 3 children and 3 dogs. I thought that was the worst of my week loll. Well one I took the children to school, came home went on as usual about my normal day cleaning and talked on the phone with my friend. Then I went to go call my dog in…..and half my face was paralyzed…..Panic set it...I text my friend to come over ASAP and take me to the ER on base. She drove me and was half playing around about the situation and kind of in a panic, cuz when I went to check in at the ER I could barley slur out my name at the front desk. We got me checked in they did all sort of scans and x-ray. I informed them by writing about my kidney transplant and my other condition of hydrocephalus and VP shunt. So automatically I became the priority of the ER. So the docs in the ER were not sure what was wrong and decided to send me to another outside base hospital.  My friend in the mean time was trying to get my husband informed in Afghanistan. They put me on an ambulance, and then my journey was on my own because my friends went home to care for the children I had been caring for., she said her and our other friends would be by later in shifts to check in. So I get transported to this other hospital. And still half my face was paralyzed and unable to make sentences and all alone.  They get some of my blood work back, which reveals my potassium levels are high. If potassium levels are high that can lead your body to go into Hyperkalemia (cardiac arrest). So to help to bring the levels down the nurse wanted me to drink a think grainy drink. I’ve had this in the past when I was younger so I was willing to drink it down….only problem was half my face mouth included was not be cooperative. Every time I attempted to drink it just spilled out of my mouth. The nurse came in PO off because she thought I was doing it intentionally…and threatened that if I didn’t drink it she would but a tube in my nose. So that panicked me, because I didn’t want that. 

The more I panicked to attempt to drink it, the more it spilled out of the corner of my mouth. So she was pissed, and another nurse ccame in to hold me down and she forced it down my nose. That was THE SCARIEST MOMENT of my life I was screaming and screaming tears rolling down my face as these two nurses are forcing the tube down my nose. At that point I just wanted to die in a hole with this thing in my nose; I could feel it all the way down to my stomach. And this nurse just sat their pumping the medication. I think I finally got so tired from screaming and crying that I fell asleep.  I don’t really remember that night clearly, it felt like a blurry nightmare. Laying their half my face paralyzing with a tube in my nose, just lying their in a dim hospital room all by myself. Prolly the lowest moment of my life.  A nice gentleman nurse came In saw the agony on my face and brought in a TV remote for the TV in the room and tried to help ease my hurt a little. The noise helped for a little bit, helped me to sleep again,…for a bit….then I woke up thinking I’m here all alone, and I couldn’t even call my Mom to tell her what was going on, and I didn’t even know if my husband was on his way yet. So then I started freaking out again, crying then hyperventilating because I had the tube in my throat. A new nurse came in and tried to calm me down, and all I could do was just sob. And I really don’t remember what happen after that, I remember I begged the nurse to take the nose tube out and she did. The next morning my friends from the neighborhood came to check on me, said my husband was in route, and that they let the children’s parents know, and their father was in route too. They stayed for a bit, and then I was taken away for a kidney biopsy. I don’t really remember anything in correct order after that for the next day. I remember still not being able to speak and lay watching the Royal wedding on TV. I remember being transferred again to another hospital. And then I guess I was out again cuz the next thing I remember was waking up my hands and feet tied in restraints to the bed, and a breathing tube down my throat, and this face I saw next to me, I knew her. It was my mother. Somehow she was there, and I hoped I wasn’t dreaming. I couldn’t talk but only touch her hand with my fingers. I was in and out of it for awhile seeing glimpses of faces and mumbles of words. My in-laws came, then finally I saw my husband’s face, I was so happy to have him and my mother there, first time they had all been in the room since our elope was now announced. The doctors spoke with mom and husband in private and I guess s the doc said my kidney was failing; yes my 11 years transplant one.

So since the doctors in Stanford Hospital, California, mom and my husband agreed that it would be best once I was stable for me to fly to California for better treatment. Then come back to Kentucky when all the problems were resolved. So I lay there still unable to breathe on my own do to paralyzed parts. My husband went to our home to make sure our dog was ok, since she was with neighbors. He was going to help get us a flight to California. Slowly but surely I was having a recovery, No more paralyzed. Abe to speak with a slur but full sentences.  And finally the tube was removed and I could breathe on my own, by then it was five days my mother had been with me, and my husband? Nowhere, no phone calls.  Said he was cleaning the house and taking care the dog for when I got home. Finally time came to leave and mom and I had no way to get to my house on base. Thankfully some lovely older Blue Star Moms came to our aid and helped get us to the house to pack a little suitcase and help us get to the airport. I said goodbye to my husband for a time being and said I love you and hugs and left all my things for a “visit” to Cali.

The next morning the ladies took us to the airport, we had planned to travel with my puppy Lily. But when we got to the check in where we get her on flight kennel she wouldn’t fit. L  I was barely able to move at this point, my body all swollen with fluid and joint in pain. Arms in pain from the numerous needle pokes. So sadly I had to leave Lily. But thankfully the nice ladies were so wonderful enough to care for her until I could find a way for her to come home to me. SO mom and I flew all the way to Cali, I slept most the plane rides. And we came through the gates at the Cali airport and there was dad and my brother waiting, two more people I had not seen in two years J 

Barley able to walk or see I just lay around, and waited two days later we had an appointment with the Stanford doctors.

And so their verdict was definite that my kidney was failing, but that they were still puzzled how two weeks ago I looked like death with a 15 Creatinine and I was sitting in front of them with w Creatinine of 6.  So they thought they would just see how much of a recovery I could make and just watch closely. A few weeks later my potassium got deathly high again, so I was in the hospital for a week.  This time I was feeling fine might I add, even on the edge of a so called stroke. SO I was able to drink that sandy thick drink with no problem. In that week they concluded that I was going to have to go on hemo- dialysis to help keep all the toxins and things intact. So they put the port in and that day I began dialysis. Bled to death for 5 hours since the port was no securely in my chest and the surgeon was not able to come fix it until 5 hours later….any who went home…..got my dialysis schedule. 3 times a week 2.5 hours.

My energy was actually getting better and upbeat, I was able to hang out with one of my wonderful friends Jason J and my best friend in the whole entire world Justine. Justine is a transplant just like me as well as my fellow high school mate so we were meant to b friends for life: P

Anyhow so once again here I am now. Living life.  Doin the dialysis thing and living with it until I get a kidney transplant.

*O yes husband….so he saw me in the worst state possible and after I arrived in California he decided that he could not deal with this illness ordeal, even though he fully knew this could happen. He wrote me an email saying it was over and he would be filing for divorce….yes that right. Ok let’s give a woman already with high blood pressure and kidney disease reasons for high blood pressure. 

Well I sobbed for a week, and then I woke up one day and realized WTF is his problem. That how could you leave someone to die that you loved so deeply. Just tell her over an email. Pshhhh he can eff off then I’m beautiful and way to awesome for him.  And I don’t need any negative people in my life. Especially right now with my health, only positive thoughts J

OK so yes I think, I finally caught up to NOW LOL.  

Preface of some sort I guess..

At age 13 I was diagnosis with FSGS/Kidney Failure, inherited from my dad ( my dad had a transplant in 1969.) I underwent hemo-dialaysis for almost seven months; I received a kidney from my mother in Jan 2001. It was a beautiful match, sadly about three months later my younger brother was diagnosed with the same thing and received a kidney from my aunt. Life has blessed us with living loving willing donors so we could get back to normal lives and living healthy with the help of medication daily other than that everything else is normal. Iv done so many things in life that Iv wanted to traveled to Ireland, graduated high school, been to college, fallin in and out of love, living with positive thinking  helps me get through life. And to to see all my life experiences as things that help to mold me into a stronger and confident person. ……It now 2011 and I’m 24, And my story has taken another turn for unbelievable path….