Ups and Downs

 Time flies, when life is just passing you by and your still in the same place. Heavy feet and heavy eyes. I wake up sometines and even though I'm happy and thankful to be alive, I still think what is this all worth. Just repetitive day after day.
With that said Easter was wonderful had some family come spend the day it was really great.Just what I needed. Togetherness<3  We even did a "big kid" Easter egg hunt :p 
Also Im working on finally following my dreams and going to Culinary School :) Cooking is one of my passions. I love to cook for anyone and make them smile. Thats how I show my love tee hee. Luckily there's a awesome culinary school bout 15 min from my home. I was hesitant to wait and enroll after transplant. But waiting for transplant looks like a longer wait than I thought. SO Im thinking of attempting to go to school, hopefully I can do it, even with all my sickness and fatigue somedays, and dialysis. 
Also the doctors said they wouldn't let my Aunt be my donor......hence the wait longer. They said something with one the tests showed that she she would not be a suitable candidate....so we are going to go to another hospital and get a second opinion. Life has twists and turns, I am not sure what will happen next. But I know something good will happen, everything happens for a reason. Even if it looks hopeless. When I heard the news I just got this big lump in my stomach, the docs has acting like this was it, then suddenly it was like ROADBLOCK. 
Dialysis is going pretty well, have not gotten sick in along time during treatment. 
Sleeping has become a new-sense again, the sleeping pill I am on seems to have no effect on me anymore. Other than that just hanging at home with the dogs, baking and cookin, taking the dogs to the dog park. And now that the weather is warm and sunny, I started pulling weeds to get a nice garden in place.
Just pray that I get a donor soon. Much love to all <3

how time gets away

Sorry for not writing. Its been a wave of things going on. On top of its been just a time where I have alot to say, but at the same time. I dont feel like talkin. So many questions, and no answers. I'll fill everyone in probably tomorrow, or later tonight. 

Donate Life-Blessed-Waiting

Well I ended up getting the cold everyone had. Doing much better now, cold symptom wise, lil sniffles. Kidney wise still waiting waiting waiting! The docs are still doing more tests on my aunt,she was here again this last week for more timed blood test. Now more waiting. She and I are both anxious  :p Did you know that 113,786 people are waiting for some sort of transplant? Today I went to a Donate Life Meeting. I am really involved with different kidney organizations, and organ donor awareness organizations. I just really want to get the word out. Organ donation has been a big part of my life and my families life. WIthout organ donors my brother and father and I  might not be here .We were all blessed to have a familiy member donate. 

Lysol, Hand Santizer and

 Everyone in my house is sick right now, except me. With three transplants in the house and all on immunosuppressed medication germs are easier to catch. I really hope to avoid catching the families cold. 
We have to be extra careful about germs, because we catch them extra fast and it seems to be double the cold that everyone else had. 
So cross your fingers that I do not catch this cold :P I especially do not need a cold being on dialysis and everything else that my body is going through.

Wondering

I think alot about how its gonna be when I get this second transplant. Its been twelve years since my last one, and I'm sure procedures have changed since then. I remember being in the ICU and being weighed in a hammock type strap because I couldn't walk yet, lol felt like a giant whale being lifted out of the water haha. I remember the ganciclovir antibiotic stinging as it went through the IV and then through my veins, I wonder if they will do that again, and if it will hurt as much. I remember being embarrassed because I could not read my new kidney and my bladder control was horrible, 13 and peeing my pants, how embarrassing, I wonder if my bladder control will be a lil more controlled . I wonder if my scar will be as big as the last.I remember shocking the docs as I started walking three days after surgery.One determined lil princess I was...I mean I AM :p I wonder if I will be as strong as last time. I wonder so much of how different it will be second time around in good and improved way. I know in my eyes this will be a piece of cake, because it beats doing what I have been going for the last year. 

Draggin

Just taking it one day at a time. Urg these doc are draggin their feet on getting all the testing done for my aunt, and the whole transpant process.....trying to be patient.

Learning Patience

 Today mom and I spent the day with my Aunt at the hospital while she got more donor testing done.She had to get infused with some sort of IV dye, and then every hour for four hours get blood draw, eeks! shes brave. The blood tests are to check to see how much of the solution is still in her body and how it is filtered through the kidneys. 
So we spent the day running back and fourth to the lab. We should get some results in about two weeks. Patience, patience. Everything will come into place when the time is right. <3

World Kidney Day- March 8th

World Kidney Day was today. Happy Kidney Day!. urg well I have been tired alot more, just because of med changes and adding an extra half hour to my treatment time. I thought I was going to have to have surgery this past week because my dialysis port possibly had an infection. thankfully they gave me antibiotics and it cleared whatever was going on. Im so relieved I really did not want to have to get another chest port in, be sore for days and possiably bleeding and urg, just having to go through another procedure.I mean I know its a piece of cake but still the fact that Id have to go through another procedure :(.  Other than staying at home and being sleepy alot, I have not done much. My energy is just sucked out of me from any little activity. 

Transplant Scars-brother and me :)

As of today the organ waiting list is 113,307. Thats an insane number for the United States alone. I'm so thankful to my mother who was my first donor, as well as my younger brother who received a kidney from an Aunt. We could have had to wait years if we did not have a living willing donor. People wait 6 to 8 years before their number comes up on the list.Soon though hopefully I will get a new kidney. God has a plan, not sure what it is but hes got one. Its getting late, and I really should try to sleep. Much love and happiness

Long Hall

Iv been typing and retyping this piece. Iv been up and down lately with feeling fatigued and achy and just all sorts of little things still due to dialysis.I was sitting in dialysis the other day, and in the chair next to me there was an old woman getting treatment and her husband  was there sitting with her. I know that us as patients have to be strong with what ever we are going through, but the people that really stand by and see us through whatever maybe in our path those people have to be just as strong. Finding a love that strong is rare. To find someone who will watch you at your lowest and even when they it all, they put on a strong face for your sake. And sadly people walk away because they cannot handle what you have to go through but then again there will be that one love who will. I haven't met that person yet but someday.In the meantime I have my wonderful family who stands by me through all this crazyness. Not very many people have someone who sits with them for the 3 to 4 hour treatments. I'm really thankful to have my parents stick by me through it alll <3

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 :)