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….