The Starfish Thrower

What do you know about donating a kidney?

Did you know that the most common blood type on earth is O+?

Did you know that donating a kidney does not shorten your life if you simply take care of yourself?

Did you know that the waiting list for the most common blood type on earth, is also the longest?

Did you know that the remaining kidney will increase functioning capacity by as much as 35%?

They will tell you that there is no gain whatsoever to the donor.

This is not actually true. You gain the knowledge that you reached out to a fellow human being, and gave them a chance at a life. To have children. To marry. To love. To grow old.

There is an old story of a man walking down a beach covered in starfish. Literally millions upon millions of starfish are dying in the heat of the sun, as the tide retreats beneath them. 

Way off down the beach, he can see another man running up and down the beach, each time to the water, and then back. 


As he draws closer, he sees that the man is picking up every starfish he sees, and flinging it back into the ocean. Again and again he scoops up starfish, flinging them back into the sea. 

Finally abreast the man, he asks "What are you doing? You can't possibly save even the slightest fraction of all the starfish on the beach. Nothing you are doing means anything." 

The man stops for a moment, and looks down at the starfish in his hand. "It means something to this one."

Now here is what I want you to do. It is simple, and easy. 

BE THE MAN SAVING THE STARFISH.

One More sleepless night.....

         As usual not sleepy.......this is really getting old. Course I guess it would help if I set a time for myself to take the Ambien haha. Im just not sleepy and I let time get away from me, and when I finally think to take the ambien its like 1 AM. What do I do with that time, lots of lame artsy things haha, and watch old movies.I'm a big James Dean fan. Hes the living end :p
So the move is pretty much settled, I love the new house way better than our old one. The dogs love it to. I turned my book shelf into a shoetopia <3
     Just because I'm sick and hardly go out like I used to does not mean I don't have to look totally cute :p. I don't need to look cute for anyone except me, I just happen to look xtra cute if I was seeing someone haha. Speaking of that so I decided to let myself be open to dating someone. Iv been kind of scared to do that because I am so afraid people wont be accepting of me with the chest cath and all the stuff going on. But I'm putting myself out there, I'm a one man kind of girl though, I can't do that dating many different people at the same time. I'v always been that way. I don't like to share haha. I mean I'm not saying rush things I just dont like to be overbooking, I mean how are you suppose to see if you have feelings for someone if you are seeing multiple different people? I'm really out of practice though so we will see how it goes lol. Like I said I'm just cautious because I don't want people leading me on, then they turn out to be over it all. I got me a new polka dot dress, one the cutest dresses I think own now. So maybe I'll look cute in it and be irresistible to someone haha........... There's this song I love,I like to think its like my theme song Fire Attire ~ "Attire on fire catches my eye, lights up the room like the sun in the sky.Burning me, killing me, now take me away from the light that I found. She is dressed to kill.Burning my eyes but I can't look away.The more I stare its the end of my days. She is dressed to kill. Brace yourself, shes dressed to kill. Iv got to get her, my hearts beating faster now. Shes dressed to kill. ...........haha I love that song. Some my friends from Bakersfield wrote that. I just want to give some that feeling when they look at me :)

I love me some polka dots :p

Haha see it just proves even more that Im just like any normal 25year old, I love looking cute, and always having my face did up, and I just want that one person who sees me for me and loves me for it. Even with all the crap going on. I look at it like a painting, I am the foreground, and all the stuff is the background. Once you see all the foreground has to offer in all its beauty then maybe the background looks ok,not so bad.I mean if I can deal with it, certainly someone else can watch me deal with it. I am woman hear me ROAR :p Now who doesn't want someone that determined hehe. Anywho I guess I better try and get some sleep.
Shall I leave you with a joke to end the night? hehe.....How do frogs die?????........................they Kermit suicide .....HAHA....hey I thought it was funny. :p

May God always be in your heart and may your spirit always be high.Let love fill your life, and joy fill your day. Let every moment in life be cherished and may you always have a hand to hold in tough times in life. Many prayers for me and for all. God bless and good night.

That Moment in Life

          There's always those moments in life when you wonder what the whole purpose was? Iv had so many horrible moments in life, that if I weren't the person I am I would probably want to just let go and give up. But in all those moments Iv had some wonderful beautiful moments too. And thats what you gotta do, just think about the beautiful moments; so that you can have more beautiful moments in your life. For every teary moment make a beautiful moment.
I'v had so many beautiful moments in life.

~Moments like looking at the beautiful Cliffs of Mohere, Ireland. Feeling the wind almost pushing you over the edge, and the sea below splashing. How many people can say they have experienced a moment like that?That's one those moments that I would relive over and over.



~Riding the London Eye, the tallest structure in London! Being able to see all of London through that glass. It stands 443 ft! When you press your hand on that glass to see all the sights, you feel an uncertainty for a minute as to how close your really want to get to the glass to see it all.

~Having high tea with my mom, and telling her all my stories of how it feels like the high tea from London. Sitting in a beautiful room, so prim and elegant. Drinking tea from beautiful china and amazing savory food.



~Coffee! that's always a beautiful moment. The minute you wake up and that aroma fills the house.As you put the cup to your lips you can feel the heat touching your face and your tongue gets that first lil bit and it reaches all the way to the pit of your stomach like a warm hug :p  

So many moments in life and if we dwell on the bad ones how will we be able to enjoy the wonderful ones? There might be times where your steps away from the edge,but you just gotta breathe look over the edge and step back. Tell yourself not today,tomorrow is always a new and beautiful day. 

~Like enjoying a former Storytold performance :p Those have been some beautiful moments. Listening to Loren sing amazingly, and the guys play awesomely (lol I don't think that's a word but I couldn't thing of any other way to describe it haha)The adrenaline rushes and your heart beats with excitement. Every lyric being lipsynced by you and everyone around you. Smiling with joy to every note and chord. :p

~What about when you make other people happy? Making laughter, a laughter so contagious they forget for a moment all that they are going through. Being able to share beautiful moments together.

~Being proud of yourself for your hard work :) and everyone else enjoying it, once again making others happy with your happiness. 

~Seeing your new puppy for the first time,and she sees you, and you both know you are meant for each other <3 

~Meeting someone new and that person makes you smile, even though your still unsure what to make of it all :p 



So many amazing moments in life and that is just a few I could name off the top of my head <3 There's so many more beautiful moments to come,I'm sure of it. So many more people I will encounter who will share a beautiful moment with me. 

That moment when I get the call about a kidney will be one the most beautiful, And its in my future somewhere. 

So to all of you with heavy feet and tired spirits, think of the beautiful moments in life.Let that be your strength, that you too have many beautiful moments ahead. <3

Turn Around

       So its been about two months now that my blood pressure  has been at a normal range. Things are looking pretty good,well in terms of that situation........still have the problem of no kidney yet, and still on four days a week of dialysis. But things could be worse.......... God has some plan, but Im really not sure what it is, and I dont know why he does such things to people sometimes.
           I was at McDonalds the other morning picking up some breakfast after dialysis and this homeless man stops me, he noticed my chest cath. He asked if I was on dialysis, I was a little uneasy, a random homeless person asking such information. I replied with a quick "yes" he tells me hes on dialysis too and that he has a chest cath. "Sucks doesn't it?" I was a little in shock at finding a random person with the same situation, non the less a homeless person. "Yes it does suck, I guess thats how life goes sometimes eh?" " Ya, God Bless" he replied and we went on our ways. 
Just goes to show someone could always have it worse than you. I could never imagine being homeless and have a failing kidney. I mean how do you keep that chest cath safe from harm? Of clean and sanitary? Life always surprises me.

 Cupcake biz is up and down.  The word of mouth process takes a lil time I guess. But the people that I have done jobs for have all loved what I have done. :) I think I'm becoming immune to cupcakes lol, I used to not be able to look at them without having one, now I just taste a piece to make sure I did not somehow screw up the recipe lol. I like baking and cooking but sometimes Im not even in the mood to eat haha. I just enjoy making and creating and having other people enjoy. 

Whats for fun these days? I'v kinda lost my "Mars attacks" fun side lol. Before my marriage and this recent health situation relapse  I used to hang out with lots of local band people, being the amateur photographer, just having fun being part of something. My friends of the former band Storytold just recently had a reunion show. Finally! lol I had been dreaming of that, like alot of people haha. As always they were amazing, and as usual they made their Lil Mars Bars feel special haha. I mean they made sure that I was going to be able to make it. Everyone as usual called to make sure I would have a way to get there and Loren (the lead singer) told me he has a ticket for me, haha sadly he told me to late cause I had already bought one, I was not going to miss that show. Anyway so I made the show obviously, even with me being a lil scared to be in the crowd of people with my chest cath. Heck I got up in the very front of the stage as usual, screamed my lungs out and totally had a great time, and had fellow fan friends guarding to make sure I would get bumped by some other crazy person haha. That was the most fun I had a long time since this relapse. 
           
                So I know I have not written in a really long time. Times gotten away from me, with having to recently move. Took forever to find a place that was not a scam. Plus there really has not been anything to say. I mean how many people want to hear about me going to Starbucks and dialysis over and over? haha Thankfully my health has not worsen so I have had nothing to report. As long as I stay positive and stay within my liquid restrictions and watch my diet I think I'll be okay for the time being. Lots of people have more problems because they do not follow the doctors orders. I look at people at dialysis and somehow they are in worse condition than what I saw them in a year ago. I guess people give up hope and just give in to temptations. 
I just keep telling myself its all for a reason and its all gonna get better. 

Just gotta rock on and be my crazy lil beautiful bubbly self :P 

Finally Feeling

Finally feel myself again, after that last ordeal in the hospital. I was feeling really messed up, not sure if it was just from being in the hospital, or from all the IV medications. Especially that nitro drip, Id never had nitro before and that was the only new medication I was given. So I think maybe the nitro had something to do with why I was still not totally feeling myself. 
I just had been nausea and vomiting the last few days after I got out the hospital.My appetite also was not what it usually is, I mean usually I can eat portions for four people lol, but I had barely been eating enough for one person. BUT this last week I'm finally feeling back to my regular me, no more vomiting or nausea. Well no more constant vomiting, I know gross, TMI but hey its part of whats going on.
Anywho, so back to my old self, still no word on a donor match. But good thing is since my last blood pressure ordeal in the hospital, my pressures have been EXCELLENT at home. I don't know what they did that fixed it but something worked. 
Nothing much else to report here, just hanging around at home as usual. Working on getting my foot in the door at that culinary school. Still doing four days a week dialysis...urg............

"Vacation Stanford"

So I was in the hospital this past week, was quite a rough adventure. SO I went in because my blood pressure was like 222/130 on top of having stabbing stomach pains, so bad that mom an dad were in route to the ER but it go so bad they pulled over in a 7-11 parking lot and called 911, mind you its already midnight on the 4th of July by now. Ambulance ride was bumpy and my stomach pain was now spreading to my back. The paramedic said she could give me paid med in an IV....well she attempted TWICE to stick me and couldn't get it.I told her to just stop trying, I did not know what was worse by then needle stabbing or horrible constant stomach pains.At the ER the doctors were puzzled. What could make my blood pressure so high? when I am already on 5 medications, and they tried giving me IV blood pressure meds and no reaction in a 24 hr period. Finally got moved up to a regular bed upstairs. About 6am as my parents leave to get a lil shut eye I started puking unstop ably for atleast 4 hours. Urg by the time my parents come back like 6 hours later the puking seemed to slow down, but then there was my room mate causin more disturbance, seriously the worse room mate anyone could have, she even annoyed the nurses to the point where they gave me ear plugs and said "we are trying to find you another bed". I got settled in my new room, but my blood pressure was still not where it should be. So the doctors ordered a Nitroglycerin drip, then I developed a bad reaction to that, got the chills like out of control chils, feeling unbearable hot then cold to no end. My body was shaking so much it looked like i was being electrocuted. They gave me something to sleep and I knocked out for a bit.On top of that I had an IV in each arm. Even though the Nitro was horriable it seemed to do the trick on the bp now they just had to watch for a few days and do dialysis in hospital tomake sure it really did the trick. the rest of the time i was just over tired and afraid to eat anything. but i think with the help of reorganizing my meds it looks like it uncontrol now. urg Im so tired now.but better.O! and one the head kidney docs who I already didnt like, I hate even more. SO he came into to do a final check and starts givining me a lecture about "maybe you remember how sick you felt and that maybe now youll take your medication." WTF! I was so in shock i was speechless. Seriously dude you think Im making this happen on purpose. I take all my meds and even extra some times, I pop it like candy! omg



Yea so thats my latest adventure.....Iv been home now about three days,but I am still not feeling myself. My appetite is not what it usually is, and I am just fatigued. It will just take time to get back to my old self. It was a rough four days in the hospital, my body went through a lot. Although I did have a wonderful day yesterday, one of my Aunts and cousins came to visit. We had a really great day went to the park and we had a bbq in the backyard. It was really great. Being with family always makes me happy. 

"To us, family means putting your arms around each other and being there"

Sometimes

Sometimes I dont want to write because my head is filled with so many thoughts. So many things and people wont understand. I mean how many people in my life time have I met that have been through even half of what I have? ...not very many lol. People cannot begin to comprehend, my thoughts, or feelings. 
I always seem to have a constant fight going on in my head,  fighting over whether I can keep up this perky act.  Yes I am a very optimistic woman and full of positive energy and what not. But then there's a part of me is like why me? why again do I have to be my own heroin in my story? I mean I know there is some reason that this is all happening. I just wish it wasnt.I mean how much more can one person take, especially only just reaching her twenty sixth year of life.Kidney disease is really serious, I really do not think people understand how much your kidneys effect your life. Last week I had a little too many potato chips, and my potassium shot out the roof, I could have seriously dropped dead, from eating a potato chip! If I was to stop going to dialysis I would probably die withing the week. Thats how scary this is. I know I look great most the time and have a beautiful attitude, and shelter everyone from how sick I feel sometimes. So I guess people do not really realize whats really going on.  I am not sure when it will all make a turn for the better,but somewhere in the future it is there. I just gotta keep trudging on. Picking myself up when I fall. Not sure where all these pieces connect in my life to make for a better..though I do know that all these "adventures" have made me more aware of what life really means.t. It's over a year now on dialysis and waiting for a kidney. And I am grateful to be alive. I wonder though when am I going to get that wonderful call? How much longer? I still have my chest cath, docs are surprised how long its lasted, and everyone keeps pushing to take it out and put a fistula in...I have been stalling that. Im hoping that transplant it around the corner and that there is no need to mess with my chest cath if there is nothing wrong with it.That potato chip incident last week was real bad...8.5 potassium, I decided to have a few potato chips havens had any all year..well had a few and few more and few more, and next could barely walk, nurse said I could have had a heart attack, and the dietitian said I could have dropped dead right there. So pray for me and pray I find a match, and not only for me pray everyone in there dying need gets what they need. 

 Faith is being sure of what we hope for and certain of what we do not see Hebrews 11:1

the sickness

Been getttin sick alot, lots on my mind, but have not wanted to spill my guts about it all just yet. Much love and prayer to all. Sending you good thoughts, please send good thoughts back <3

5,400 people....

5,400 people are diagnosed every year with FSGS (focal segmental glomerulosclerosis) kidney disease. My brother and I were both diagnosed as we turned 13. FSGS there is no cure and they have no idea how it occurs. FSGS is very different in every case, some are diagnosed at an early age, some are able to be stable just on medications without going the route of transplant. 
In my brothers and my case we had no idea, it hit us like a wave, one day we were fine the next day I was near a stroke at  13. Doctors have not what causes FSGS and are working hard to improve treatment and find a cure for FSGS. 
Today my family and I walked a walk-a-thon with the local Nephcure chapter. Its so wonderful for people enduring similar situations to get together like that and  raise awareness and donations. 
My family walked together, sharing our story with others, our story usually shocks people because there are three of us that have had  transplant. My Aunt who donated a kidney to my brother, walked with us. The weather was so beautifully perfect for the walk. 
I did really well with walking about 2 miles, my energy was upbeat, course the minute we got home I zonked out for a cat nap :p We had a lil family BBQ after and enjoyed just being together. I really love spending time with my family it helps me cope really well with all the things I am going through. And next week we are all walking the National Kidney Foundation walk. 
Well my dialysis treatment is about over, so Ill bid you adieu. <3

92,488

As of today there are 92,488 people in the United States waiting for a kidney. Can you believe that?! Think about all the people who have two perfectly good kidneys, and you only need one to live.

the blood being cleaned 

 Iv been on dialysis a year now, and Iv talked to many others in the same situation.. dialysis...but theres one things that's different, most of them have decided to stay on dialysis for life rather than try for a transplant....Scared of transplant. Somehow they have a gruesome picture of transplant process. Not only is the surgery tolerable, its means so much more. It means no more fluid or diet restrictions.Means not having to spend hours of your life on a machine, and having more health issues. I'm not saying everyone is like that choosing dialysis for life over transplant, but there are that handful. 
As for being an organ donor, its one those things that if I could i would do it in a heartbeat. If more people were organ donors the waiting lists wouldn't be so long. My father, brother and I all had living family donors.
Anyway enough of my ramble about organ donation, but do give it a thought :p. 


      As for my progress, well dialysis is doing well, I think we finally figured out for sure my limit as to how much fluid we can pull off in one treatment. Iv had to decrease my fluid intake again because I am not peeing as much, and the more fluid that stays in me causes more problems. I am not like most of the other on dialysis, I am very petite and I mean very lol, so every lil once effects me unlike most people who can go kilos over in fluid. Believe me I know I cant. A few weeks ago I over drank by 2 kilos and they tried to pull it all off but I ended up puking not stop until they gave me a nausea medication that made me feel like I was now intoxicated lol. Urg I will never over-drink fluids again....course thats easy to say, and I really do try to stay on task with watching my fluids but sometimes, I just really want that extra glass of iced tea. Im doing good though, always a lil over but never like that one horrible time. 
Went to UCSF yesterday for a full transplant evaluation.Just have to wait to hear back from the doctors on what the next step is. Other than that nothing else to report, blood pressure is still not under control.


O! I am doing two 3 mile walk a thons in weekends to come :) very exciting. They are both for kidney disease, plus it helps me stay in shape, AND show people that just because I am on dialysis doesn't mean I can not be fit and energetic. 
SO I think I caught up on all thats happeneing. I really will start writing again on a every other day basis.<3

Bad at This

Wow, I have been getting really bad at keeping up with my blog :p Iv been in and out of the hospital with major blood pressure issues. A few weeks ago it was like 222/140, even after taking all five of my blood pressure medications. Dialysis has been rough, the doctor is has changed my fluid goal on dialysis, and added more medications. Things are going so slowly, its already been a year now that I have been sick, I cant even believe that. I have so much to say for updates,but Ill have to wait until tonight, because my energy is not the greatest during the day until about 3oclock. I hope all is well, and that everyone is enjoying the sunshine :)

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