Open your eyes....and see

I have been through so much in my life and you wouldn't know it if you looked at me...Sometimes I don't even believe it. But iv got plenty of battle wounds to know its all true :p. What makes me get through it is the love of the people in my life and I am so grateful to them for being there for me through everything in my life. I know I wouldn't be as strong as I am if I didn't have the support...People don't understand how sick I am really am sometimes....I try to keep upbeat and look strong for everyone else...but someday I just am sick as a dog and look like it loll...People who are not really familiar with kidney disease do not understand how critical it really is. ..
I go to dialysis four times a week and I never go alone....but there are 16 other patients getting treatment at the same time and I think only 2 other patients have someone with them....the others are alone, and I could never imagine being alone during that time...or how people could leave a loved one to go through that alone.
No one should ever have to feel alone while going through things like this. 

I have a few messages I want to get out to people:
1) I need a kidney donor
2) Organ donation awareness-and how many others need a kidney
3) if you know someone going through something like this ...don't be a stranger.
4) Life is beautiful, just like you don't forget that, you are worth it!

*And to thank all the people who have imprinted in my life in small and big ways.

The Story of Alma~Living Organ Donation

I asked my Aunt to write her story about when she gave her kidney to my brother, to give her experience as a donor.I know some people are scared to do it because they do not know anyone who has been through it, just talked to doctors and such. So I asked her to write her story as a donor :)To help give other a little more reassurance that is an amazing choice to donate:::

             :Ten years ago on January 13,2003 I left my home in Sacramento at 6 in the morning and headed to Lucille Packard Children’s Hospital at Stanford University.  My nephew was waiting for me to check in so we could start a new journey in both our lives.  He at age 13 just as his father and sister at age 13 under went kidney failure and depended on dialysis until a suitable donor came along.  Luckily, I happened to be a good match for him!  

 When my sister who is my nephews mom called me and told me the news about needed a kidney donor for my nephew, I did not hesitate in stepping forward and immediately asked how we got the process moving.  The first thing I did was go down to the hospital where they took a few vials of blood to check and see how many, if any markers matched.  I was told the more markers matching, the better my chance to be selected as a donor.  Just because we were family did not necessarily mean we would be perfect matches.  A stranger could sometimes be selected as a better donor than an immediate family member.  

Well, after our matches came back as being classified as a “good” donor, I had an opportunity to talk to a pschycologist who offered to answer any of my questions I might have, and at the same time I think they were checking to see if I was be forced or coerced into giving my kidney.  Well, I had many questions and concerns as I had 2 young children of my own, but I was reassured that being a living donor would not affect my health in any way.  If I continued to take care of myself and eat right and exercise, as we all should, my life would continue as if I still had 2 kidneys.  That was good news to me as I worried if I would jeopardize my future of being around for my own kids, as I grew older.   

After my many questions and concerns were set to rest, I continued with physicals and a few more blood tests.  I then saw another psychologist who needed to confirm I was doing this at my own free will.  I thought this second appointment was unnecessary, but I was willing as to not prolong this process and get my nephew his kidney.  You see, dialysis takes a big toll on a person’s body.  Yes it helps them live longer, but during this process it is hard having all your blood drained (slowly of course), filtered and then re-circulated back into your body.  He was getting thinner and it is a difficult way for anyone to prolong his or her life.  Yet, for so many people, this is the only way to stay alive.  This was the last step before we could schedule an operating date.  We were almost to the finish line!  

So we set the date and waited in anticipation.  My husband and I set up for grandma to come and stay with the kids while we headed to Stanford.  In getting there, I was checked in and feeling a bit under the weather.  I hadn’t gotten enough sleep the night before worrying if I had forgotten to tell my mother in-law about something the girls might need or want.  Well, the nurse took my temperature and it was 101.  I could not believe it!  They asked me question about my health, and did a few test and we soon learned that I had strep throat!  So we had to reschedule and we were all bummed!!!  Its like standing in line for that concert ticket of a life time, and getting to the front of the line and they put the “sold out” sign up as you put your money on the counter!  So we headed home only after being told the surgery calendar for our world-renowned surgeon was booked up for the next 3 months, but if anything opened up, they would let us know!  Ok thanks!  Just what we wanted to hear after we had waited so long.  So we headed back to Sacramento with a bag of antibiotics and a heavy heart. 

That was December 2002.  Christmas came and went, new years came and went, finally the phone rings and they say we got a surgery date but we need to be to the hospital the following morning at 7 am!  We have no time to arrange or wait for people to drive down for our kids, so we pack the car with bags of clothes for each of us and head to Sanford early before the sunrises the next morning.  We put our sleeping girls into their car seats and head to Stanford.  We check in, get vitals taken, and all is good!  

After talking to our doctor one last time (an angel of a man!) saying a prayer and hugging everyone, they wheeled me and my nephew off to our operating room to prep us.  

I remember them telling me to count backwards from 10 and they would all see me when I woke again.  Our doctor patted me on my shoulder and he said “don’t worry, see you soon and Jeffrey will be fine because of you” 10, 9, 8….

As I woke up, I remember the nurse saying everything went well, Jeffrey is fine!  That was exactly what I wanted to hear!  I felt a bit of pain as I attempted to move, and they recommended me not to move too much.  I was wheeled to my room after being watched in the recovery room for some time.  I was greeted by my husband who said to me “happy anniversary!”  I hadn’t realized with all the excitement of hurrying to get to the hospital that it was oue wedding anniversary!  I always joke that on January 13th I gave my heart to my husband and my kidney to Jeff!  From there on it was a breeze!  I was in quite a bit of pain, I won’t lie, but with help room some painkillers, it was very tolerable.  I was up and walking the very next day and after 4 days, I was on my way home!  

I was not on any life long special diet.  I was told to walk everyday, no driving and by 6 to 7 weeks, I would be back to my old self (minus a kidney).   

That is exactly what happened.  I went for a check up to Stanford the week following, then one 2 weeks later, then once a month for 6 months.  They gave me the all clear that my kidney I had was working well and I learned that the kidney I had would grow to be able to do the job of 2 kidneys.  

It has been 10 years now and as each day goes by, I feel thankful and blessed to have been able to give such a gift to my nephew.  I have had wonderful health and no issues what so ever with my kidney or anything else for that matter.  My nephew is also doing great!  He has really made an effort to take care of himself and his new kidney!  

If anyone were to ever ask me “if you had to do this over again, would you?”  My answer would be 100% YES!  If asked “do I ever regret doing it?”  My answer is 100% NO!!  If asked “would you recommend others to do this?” My answer is 1000% YES!! No the extra zero on that number is not a typo.  I really want people to know that this is not a health affecting surgery for the donor.  This is a LIFE effecting surgery for the recipient though!! I encourage you to step up and help someone in need.  Not only did this change my nephews’ life, but it changed my life also.  I have only felt so fulfilled and happy and needed three times in my life.  Twice was when my 2 daughters were born, the third was when I saw my nephews smile for the first time after our surgery.  To know what it is to give someone a second chance at living is indescribable.  This was the right choice for me and my family.  I hope it can be the right choice for you and yours as well

Fighter for life

Waiting waiting waiting......................Im getting really good at patience...kinda.....sitting on dialysis for 3 hours ......that takes patience............waiting for a kidney takes patience...WELL to some point. Waiting in sense. BUT still working to get the word out that I need help. And thats what you have to do. You cant just wait and wait and wait for the doctors to fix it, because they wont work as hard as you to save your life. They will do what comes easy the surgery, but they don't have to be you and be on dialysis and take meds and be on a special diet so they don't really have me as a priority. They have tons of other people that want the same thing.. YOU are you best advocate.
Speak up for yourself and be aware.
Im one that really shocks the medical staff because I ask lots of questions and sometimes I tend to put the doctors in their place and make sure I am herd.

I doubt you will meet many surgeons that have the patient arguing with them the OR about where the placement of the chest cath is going to be LOL only for me to win.
And my IV rule with nurses is two sticks if you do not get it in within two sticks then your out and I get a whole new nurse.
Or how about the time I was 13 when I was in the hospital for more than a month and then finally the doc said I would be released withing the next few days and he kept telling me that over and over and I finally got fed up and told him you are not allowed to come in my room until you have my discharge papers. HAHAH
But seriously the only advocate for yourself is yourself; its also good to have a good entourage of support to back you up in case your are too sick.

I have quite a few people in process to see if they are a match for me. The nurse says its very shocking to see the amount of people that have come fourth for me. Well that's cause I am very determined. I do not want to stay on dialysis one day longer than I have to.

I have talked to some people waiting for a transplant and they are too afraid to ask anyone even friends for a kidney. Not me...I need help and getting a kidney is the only way. If I could grow a kidney tree in my backyard and fix the problem myself I would lol,but life doesn't work that way. Sometimes you cant save yourself.

So tell everyone to be an organ donor and they may save your life, and maybe they wont match. But it could help them to think maybe they can save someone else.
95,307 are waiting for a kidney! Certainly is everyone who has two working kidneys gave ONE away that number would not be that high.....

MIA

https://www.facebook.com/marinaneedsakidney

Wow so its 2013...ya I was away from blogging for too long sorry.Time has just been crazy busy. In a good way for the most part.Well aside from still waiting and waiting for that call about a match.
So ketchup...December was just full of family time and enjoying Christmas...Donor status...well I had a friend working on the prcoess. He got really far and we all had a feeling he was going to be the one because he had gotten so far in the process.. We came to learn he was not a match :( So the search continues. 
The key is just to keep on thinking IT WILL HAPPEN. And to just think happy thoughts... lol I know that sounds kinda silly. But its the truth. And I know I keep repeating that in my entries. But I want people to really think about that.

In case you forgot what a
dailysis machine looks like :P

Dialysis is going pretty good, well good enough for a dialysis treatment. Iv gained weight so the doctor upped my dry weight. :) which is good means I gained actual weight not water weight..water weight what is that you ask? Well since my kidney doesn't work and I dont pee. Every liquid I consume just keeps adding up in my body. I am only allowed to have about a liter of fluids in-between dialysis treatments. So the dry weight is my actual weight AFTER they pull off all the extra fluids. If someone goes way over their fluid limit that can cause more health problems; heart problems, blood pressure problems etc. 
:( I hate having to depend on a machine to keep me alive. Things will be soooooooooo much better after I get a kidney. 
January went by in a flash...And we are now in February .. so I started a new project. I am making blankets for other dialysis patients :) I really want to get the word out about what I am doing.I need donations of fabric and sewing materials and monetary so that I can keep making blankets. 
I think I am caught up on whats going on...lol ya not much...dialysis...dialysis....sewing <3 

Much love 

Low low low

(<---- I just like that song :P) Christmas is just around the corner :) I just love all the decorations my house is looking pretty cute inside hehe. I was really hoping I would have my match by this time and be having a transplant by Christmas :( hey I can have high hopes. I am very determined to get the word out about my needing a kidney, as well as about organ donation in general.
In the mean time dialysis is going pretty smooth, have not had any problems getting sick, well for the most part lol. Had a few time where my blood pressure dropped then I felt like I wanted to drop to the floor ...not good. Even had to spend a whole day on the couch one day because it was too low and every time I tried to walk I seriously just about blacked out. So I am slowly being taken off blood pressure medications. Thats a big deal because my bp used to be so high that I was on five to six medications and some days that did not even help. Urg well not much else going on  right now dialysis,dialysis,dialysis lol . Good nights loves :p

Princesses,dragons, Kights and Witches.

       When we are children we read lots of fairy tails about Princesses and evil witches, about Princes coming to the rescue and far away adventures.   I used to wish I was a mermaid Princess :P  That I would be able to have amazing underwater adventures and be the most beautiful mermaid princess. Lol of course even though I knew it was impossible it was still fun to imagine.  To imagine a life so amazing, being unstoppable and to always have the courage to go on so many dangerously amazing adventures. As a child most of us do not think we will have to face so many real dangers. 

           But in a way life has become like a storybook, just a different type. There is the evil I have to overcome and there is a hero, but no knight in shining armor; that parts on in the books :P Im the heroine and the princess; and I have to fight my battles day and knight. I look those nightmares and villains dead in the eyes and tell them "you will not win today." Its a constant battle sometimes deciding whether or not I am gonna give up and let the evil win.  I sometimes have those thoughts to just want to give up cause thats the easy way out. I mean why take the scary path through the dark wood crossing paths with unthinkable dangers? And I just think to myself at the end of this long, very long dark tunnel there is a glimmer of light. I can not see the light it so far sometimes,but I can feel it. 
Its hard sometimes but we all just got to think to ourselves that its all worth it,  the path may not be clear right now,but it has a reason. And we all have dragons to sleigh at sometime or another.  No one can defeat it for us, you and only you can conquer it. So always have hope and be as brave as you can, just never give up.

So thats my lil poetic fairy tale metephor :P  ug I should really get some rest, I am not tired at all but its already 3am and I suppose the Princess does need to attempt to get some rest. This is when being Sleeping Beauty would come in handy haha.  Btw I take that Princess bit to heart still even at 26 hahah. Hey whatever gets me through my day. SO I guess I bid you all a Good Night and  Good Morning <3

Keep On Walkin

Well I had a friend being tested and had gotten quite far in the process and it looked really hopeful..well a few days ago I got the dreaded phone call, that he was not a match....That kinda burst my bubble...But there is still hope. He and I opted to join the Paired Donation program so we will continue our workups and get on the list to hopefully find my match that way.....It sucks cuz he did not match but its still very hopefull with this option, I just have to be patient and wait....but in the mean time I am still having more friend start testing, cuz you never know someone could be my match.