Re-zzzombified

So after my ordeal in the hospital they made a medication change from one the pills and made it a patch, well after a week of being on the patch it did not seem to be working to help my blood pressure but making it worse all over again. My blood pressures were back in the 160s and high with bottom numbers of 111 and higher. So yesterday the doctor said to discontinue the blood pressure patch and re-start my clonidine medication. Well I am was so tired yesterday, shows how powerful that medication is, knocked me off me feet for the whole day almost, I could barely keep my eyes open for dinner. But the good news is my blood pressures have gone back to normal numbers. I guess I'll take sleeping beauty qualities over heart attacks level pressures. :p
Other than that things are pretty stable, dialysis has been tolerable, my labs are looking great, well dialysis patient great. 
Family came to visit this past weekend, that was uber fun and made the day so wonderful. No word on transplant yet, still playing that waiting game. Its almost been a whole year I have been sick now. 

Its a good day

Dialysis went well this past week, doctor adjusted my dry weight, so they wont be pulling as much fluid off as they were. Have dialysis again this afternoon. Family come to visit later this weekend, super excited :) Im gonna make my yummy sweet potato cupcakes later today for when they visit :P Watching me some Paula Deen right now while I fold laundry. She is one my favorite :P. Not much else to say right now, Im doing A-ok right now, no sickness from meds, blood pressure is pretty stable for the most part, Im eating great. Just taking it one day at a time <3

"Hotel Stanford"

So last week I was suddenly admitted to the hospital or as I call it "Hotel Stanford". All last week I had been having small body aches and pains, Monday it was my back, I contributed it to maybe I slept on my back wrong so I thought nothing of it. Then Tuesday my abdomen was also in pain, pain like someone had beat me up in my sleep, sore and achy. But I really couldnt think of anything I did differently in the past few days; then Wednesday I woke up and I was still achy but even to the point where my arms and legs and chest and every inch of me was achy and sore. So my mother told me to make an appointment with my general doctor for later that day. Well I got an appointment for later in the afternoon but I didnt even make it .........also that day my heartbeat was a little high when I woke up 120, but I did not really think anything of it becaue it has been that high during dialysis at times, and it just comes down......welll....around 10am I started to feel my heart racing so fast, I had never felt it as if it was going to leap out of my chest. I checked my blood pressure like I do constantly and the heartbeat had leveled up to 143. That not so good...I called my mother at work and told her that I probably needed to go to the ER. As shes driving me I can feel my heart getting faster and faster to the point now where its getting a lil hard to breath. We finally get to the ER they check my heartrate on their little machine and its now 165......suddenly panic set in to the nurses and doctors huddled in, everyone was trying to figure out why my heart was so fast. They even administered an IV medication to try and slow it down and this medication makes you feel like you are suffocating for at least a minute until the medication flows all through the body. They tried different doses of that medication three times and no luck.........so they finally tired another medication and I was getting IV fluids and some more IV blood pressure medications because with all the excitement and my heart rate so high now my blood pressure was around 190..........and after all those meds it took a lil bit but it finally started slowing down, and I was able to regain my breath. ..............After getting all my medical history and all the little puzzle pieces the ER docs were able to think that it was all due to dialysis; and taking off way to much fluid lately. My little body was just so dried out that even my heart was working harder. They kept me overnight just for observation, I slept in a room with 4 other patient, blah. Had to take a heavy sleeping pill to knock out because my bed neighbor sounded like a motorcycle starting up all night lol, Woke up the next morning and all my aches and pains were gone, my heart rate was back to normal, I was feeling back to my usual. I can not believe that all that was due to basic dehydration from fluid pulled from dialysis. At least now I know the signs to look for. Just really goes to show how the body is all really connected. 

As usual I just get back on feet like it was no big deal, next day I started my big project for Valentines Day. I wanted to do something to give a little smile to all my fellow dialysis patients at the unit and to thank the staff for their care. So I baked cupcakes for everyone <3 Took a lot of energy out of me, had to take a nice long nap in the middle of the day lol. It was well worth it when I brought the goodies to dialysis the next day, most patients go to dialysis alone and just sleep it away. I have my parents by my side at all times, and they keep me company and happy. I just wanted to give other patients a little morsel of happiness :p                                                     Welll I think I am caught up on all the excitement in the past week. So doctors lowered my amount of fluid being taken off, hopefully that will help, maybe get back down to three days of dialysis a week? We will see. 

Hospital

Sorry I have not written. I was in the hospital this past week for a few days due to heart problems. All is well now. I will fill everyone in later on the details. I am very tired and need my rest but just wanted to put a lil note to let people know I am still alive :P Will write later

One Day at a Time

I'm 25 now and Iv been through more than I could really ever believe I would have to. As a child I asked my mother time and time again WHY ME? WHY OUR FAMILY? AGAIN! From the days my dad was undergoing kemo therapy for cancer, to the days I was in the hospital for my many different operations, to the days I watched my little brother follow in my footsteps and under go dialysis and transplant.
As a child I endured many things most kids never even have to dream of. I used to question God and sometimes even be so pissed off at him. Why would God pick on me so much? why would he want me to go through so much pain and agony especially as a child? And then not only to pick on me but my brother and my father? What am I suppose to get out of this? Dear God why couldn't you just let me die already? 
And time and time again as God puts me through these painful situations, he leaves me to dangle on the edge just for a bit just enough to make everyone belive that I wont make it this time and then brings me back.
As I get older and the years go by I look at all the good that came out of those experiences, and that God had a purpose for me. I am a pillar of light for others, I want to be a hand to hold, the rock that's hard to budge. What doesn't kill you makes you stronger. I am a fighter! One tough cookie to break. :p
My whole reasoning for writing this blog is because I think my life experience can help other people who are going through similiar situations, and even to help give people who have never been in any life threatening situation a look into my life,maybe give people a chance to think about what is really important and be thankful for their own lives.  
I live my life with so much happiness and see the beauty in almost every sitiation,not thinking about the negative of the situation, just think I AM GOING TO MAKE IT!
 I want to give people hope. Life can suck sometimes, but you got to keep believeing in yourself. Sounds so cliche saying things like never give up and things happen for a reason. But the truth is just that, fight for your life with every nerve in your body. Everyone is beautiful in their own way, and I mean that. You gotta take it one day at a time, and not let it get the best of you. Iv noticed that the emotional effects the physical, the days I felt sorry for myself I felt physically sicker, but the days I thought positively I felt stronger. Humor is always a great way to approach a situation. Yes I'm in a f***ed up situation right now, and I get mad and I cry and all the normal emotions. You cant wallow in your pain and feel sorry for yourself, that will only make you weaker. I look at where I am to where I was in May and think how lucky I am. I am going to get through this! With the love of my family and close friends, to my will-power to live. I most defiently know that things will get better <3

Outback :p

So there's those days where I feel so not sick, so much that I can almost forget that I am on the verge of near death...course then I just look to my left side and there's that big reminder sticking out of my chest. Anywho, non the less had a pretty good day today. The weather has been incredibly warm and sunny for winter, mom and I did some Ulta shopping today. If you have never heard of Ulta omg...welll Its this big amazin makeup and beauty store. I am like a kid in a candy store when I go there. I love makeup <3 I like to be colorful and loud and other days I like to be natural and toned down. It all depends on how Im feeling that day. Anywayy....so spent like 3 hours going down every isle and ever nook and cranny of that store playing with makeup samples, smelling perfumes and finallly 3 hours selected items I really wanted to take home. Then we went for a early dinner to Outback Steakhouse, mom, dad,brother and me. SO since its Saturday I still have to Monday night  until dialysis..that means gotta be careful about what I eat....and I think I did so so. Had a lil splurge on cheese fries....yum :)...and then ordered fish :) smart choice. Its now like quite a few hours and I think something I ate today was a lil too on the potassium side...I'm not sure what it was .........but my tongue is feeling kinda tingly and cotton mouthed and my fingers are a little on the achy tingly side.....it will pass just take time.
So tomorrow the Nephcure Foundation headquarters people are going to be in town, so we are gathering for a luncheon to discuss research on my specific. Speaking of tomorrow, its just around hte corner lol/ Midnight.....well much love all good night.

Coffee Makes everyday better

Tuesday.....my day off from dialysis :P Yesterday dialysis went pretty well, no light headed-ness, vomiting or feeling like my heart is gonna explode lol. The whole two and half hours ran smooth. Mom and I just watched tv the whole time, I did not even take a nap. My dad even surprised us with some Starbucks coffee :D Yum nothing like a gingerbread latte <3 
Coffee makes everyday so much better :p 
Today has been low key and slow....a..k.a. a normal day for me.
Not working  is so weird, just staying home all day. All my jobs in the past have been in child care/education. I'm kinda of scared to step  in a classroom with a bunch of little kids with my dialysis port. I usually work with children under the age of five. Five year olds are curious and testy, but they are also more compassionate than most adults sometimes. I just do not have the energy to be on my feet all day the way I used to. But since I am home all day, I try to keep myself as busy as I possibly can. I cannot sit and watch TV all day or sleep, well I could sleep if I let myself lol. I nap a bit, do my writing of course, and I dabble in painting and drawing. Morning is when I do sit and  watch a little TV.I like to watch Live with Kelly, lol shes so funny. And I watch some Food Network. O! how I LOVE food Network. Someday I leave that channel on all day just as background noise, while I clean house and cook dinner. Other than that my days are pretty blah, well not blah I guess. I have my four dogs who I have to entertain too :p. And since most of my close friends are not local anymore I do a lot of Skype with them. 
Well I am rambling. Dads taking the family out for dinner, I better start getting ready. I am so glad I have an appetite, some people in my condition do not have the want to eat at all. I on the other hand have no problem being hungry and wanting to eat lol. Course as always I have to watch my salt, dairy and potassium,but I am pretty good with that :) Much love
 ~And always think positive and know no matter what  tomorrow is always a new day <3

Fluid Overload

So your kidneys make you able to urinate, getting rid of all the fluids you drink throughout the day, but if your kidneys dont work then what? Thats one the hardest things on weekends since I don't have dialysis for two days, watching the fluids. Since I do not have a  kidney all the fluids I consume stay in my body minus a small amount I am able to pee. Everything else just accumulates, I have to watch everything I drink and even everything I eat, because some foods have fluids in them as well like fruits, ice cream and jello. All those will just keep adding up and have to find somewhere to hide themselves, fingers,toes; for me it usually goes to my face. If I go way over, you will be able to tell. That's where the dialysis comes in, it cleans the blood but also takes all the fluids out that have built up in my body. 
I'm usually pretty good about watching my fluids, but like I said Friday night to Monday night is a long stretch, and sometimes I just cannot get enough of my strawberry lemonade and cold iced tea. 
I can overdo it sometimes, just because you do not really take into account how much we really drink in a day. I have to be careful not too be way overloaded with fluids, because then that can cause more problems. Blood pressure can be out of control and that can cause the heart to work harder, and so much more. 
And yes I did indulge in my strawberry lemonade this weekend, but I think I indulged to just the right amount. 
Thankfully tomorrow is dialysis day :P
* I had a bit of scare last week with my dialysis port, a lot of soreness and pain not directly on the site but in the general area, thankfully the pain seems to have gone away. I really was hoping for that so that I would not have to go in for a new one. 
No new updates on transplant, still just sitting ducks, doing my dialysis thing and popping pills to keep me on track. 
Just take it one day at a time <3

Scrub A Dub Dub

So one the hardest things for me about being on dialysis is the whole hygiene routine. Since I have the hemo dialysis catheter in my chest, connected to my heart, I can not shower or take a bath like a normal person. AND yes I still get clean, it just takes a lil more effort and time. I have to zip lock cover tight my catheter to make sure no water gets in the tubes or the port sight  possibly causing an infection. So after Iv wrapped and taped  half my chest, I can get in the water only to my belly button, and clean below the chest, then I have to use a wash cloth and and alcohol pads to clean above, and wash my hair in the sink. Its insane the amount of time it takes, and I do not even get to enjoy the hot bath. I cannot wait to get my transplant and be able to shower and bathe normal.  I think between not being able to pee and bathe like a normal person have been two of the most annoying things.
But I guess its ok as a temporary thing, could be in a lot worse shape.  Blood pressure is still up and down, but its looking much better.

Everyday is new

Everyday is a new day. I wake up everyday, and just breath, and think how God has given me another day. I'm still here, alive. I may not have a lot, and people may go in and out of my life, because they cant deal with my baggage. But God has given me so much. 
O its a beautiful day in Cali, you would not even think its winter. Took my pup on a beautiful 4 mile hike, and its December :P 
Some days I do feel mad and upset with how my life has gone, but then I look back at the path I have walked. Neared death more than three times at least, but God would not let me. 


Blood pressure is getting under control FINALLY :0 course thats cuz I am on five different medications for it. I have been watching alot of Food Network, since I have been home not doing much else., and put that Food Network knowledge to use. Cookin and baking up a storm. Made home made raviolis, was so proud of myself :p. Gotta put my passion and energy into something beautiful might as well put it into my food. 


*Dialysis night tonight, lets hope it goes better than it had been going. The doctor has been challenging fluid take off, and well the last few treatments, we have tried for too much, to the point where I totally bomb out vomiting and all :( So lets hope it goes better. 
Much love and have a beautiful blessed day <3

Its a new year

Well its a new year,a new start, new hopes. No new kidney yet. My aunt that was being tested, she did not completely match. The doctors say I have 80% antibodies and that if I took her kidney as is, that I would fight it and reject it. There is some procedures they can do to help lower my antibodies, but they do not want to have to do that if they don't have to. Doctors have come so far with more ways to get people kidneys, they told us we could try the paired exchange; where someone who has a donor that does not match, can match with someone else whose donor does not match. SO they are giving it about a six month time line to wait and see if we get a better match. They do not want me on dialysis any longer than that because then I can develop more health problems and being so young they do not want that to result. I already had a heart attack scare a few weeks ago. Had lots of chest pains and heaviness. Docs made me do a blood test to see if i did happen to have a heart attack, as well as a treadmill stress test. Thankfully the results were negative. 
I have been doing dialysis four times a week now, because they want to see if that will help lower my blood pressure and take off hidden fluid, I am not sure where I could be hiding it lol. Dialysis has been quite the roller coaster, since the nurses do not really know what my limit on taking off fluid is.Pull off too much and my blood pressure goes from 170/112 all the way to 80/32, that's insane, as well as can cause me to vomit and lightheaded. So needless to say dialysis has tired me out, at least I have my pup home finally to snuggle with :) 

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