The Truth About Organ Donation

Organ donation is a subject near and dear to my heart, because I know that one day my life will be saved by an organ donor and I got more time with my dad because my uncle was selfless enough to donate bone marrow.

Let me share with you some interesting facts about organ donation

1) 104,748 U.S. patients are currently waiting for an organ transplant; more than 4,000 new patients are added to the waiting list each month.

2) Every day, 18 people die while waiting for a transplant of a vital organ, such as a heart, liver, kidney, pancreas, lung or bone marrow.

3) Nearly 10 percent of the patients currently waiting for heart transplants are young people under 18 years of age.

4) Acceptable organ donors can range in age from newborn to 65 years or more. People who are 65 years of age or older may be acceptable donors, particularly of corneas, skin, bone and for total body donation.

5) An estimated 12,000 people who die each year meet the criteria for organ donation, but less than half of that number become actual organ donors.

6) By signing a Uniform Donor Card, an individual indicates his or her wish to be a donor. However, at the time of death, the person's next-of-kin will still be asked to sign a consent form for donation. It is important for people who wish to be organ and tissue donors to tell their family about this decision so that their wishes will be honored at the time of death.

7) Donor organs and tissues are removed surgically, and the donor’s body is closed, as in any surgery. There are no outward signs of organ donation and open casket funerals are still possible.

8) Virtually all religious denominations approve of organ and tissue donation as representing the highest humanitarian ideals and the ultimate charitable act.

Myths About Organ Donation

Myth: If I agree to donate my organs, the hospital staff won't work as hard to save my life.
Fact: When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

Myth: Maybe I won't really be dead when they sign my death certificate.
Fact: Although it's a popular topic in the tabloids, in reality, people don't start to wiggle their toes after they're declared dead. In fact, people who have agreed to organ donation are given more tests (at no charge to their families) to determine that they're truly dead than are those who haven't agreed to organ donation.

Myth: Organ donation is against my religion.
Fact: Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a member of your clergy. Another option is to check the federal Web site OrganDonor.gov, which provides religious views on organ donation and transplantation by denomination.

Myth: I'm under age 18. I'm too young to make this decision.
Fact: That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of organ transplants, and they usually need organs smaller than those an adult can provide.

Myth: An open-casket funeral isn't an option for people who have donated organs or tissues.
Fact: Organ and tissue donation doesn't interfere with having an open-casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation. For bone donation, a rod is inserted where bone is removed. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back. Because the donor is clothed and lying on his or her back in the casket, no one can see any difference.

Myth: I'm too old to donate. Nobody would want my organs.
Fact: There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.

Myth: I'm not in the best of health. Nobody would want my organs or tissues.
Fact: Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.

Myth: I'd like to donate one of my kidneys now, but I wouldn't be allowed to do that unless one of my family members is in need.
Fact: While that used to be the case, it isn't any longer. Whether it's a distant family member, friend or complete stranger you want to help, you can donate a kidney through certain transplant centers. If you decide to become a living donor, you will undergo extensive questioning to ensure that you are aware of the risks and that your decision to donate isn't based on financial gain. You will also undergo testing to determine if your kidneys are in good shape and whether you can live a healthy life with just one kidney.

Myth: Rich and famous people go to the top of the list when they need a donor organ.
Fact: The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

Myth: My family will be charged if I donate my organs.
Fact: The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal go to the transplant recipient.

Let me introduce you to 8 kid's whose lives have been affected by organ donation

Organ Donation Saved Their Lives

Averi received her gift of life, a new heart, on 3/20/10

Abby received her gift of life, a new heart, on 7/12/11

Kaiden received his gift of life, a new heart, on 4/15/10

Alexis received her gift of life, a new heart, on 5/29/11

Organ Donors Could Have Saved Their Lives

Pierce 10/16/09 - 1/15/10 Died waiting for a heart

Emma 8/7/09 - 10/17/10 Died waiting for a heart

Kayden 12/21/07 - 7/14/11 Died waiting for heart

Organ Donation Could Save His Life

TK is currently waiting for his gift of life, a new heart.

Now I'm only apart of the heart comunity so I could only find people effected by heart transplantation. But there are countless other kids and adults out there waiting, died waiting, or who have received kidneys, livers, lungs, bone marrow and other transplants.

Sure some people do died even after transplantion. Transplant is not a cure.

Transplantation Gave Them More Time With Their Families

Adam died 4 months after his heart transplant. But because of his new heart, his parents got 4 extra months with him. 4 extra months of memories and love they wouldn't have had otherwise.

Dave, my dad, died a year after his bone marror transplant. But that transplant gave me, my mom, my brother and the rest of our family a extra year of love, and fun, and memories we would have never have had without transplantation.

Organ donation is an extremely selfless thing to do. Your tragedy can be someone else's miracle.
Please consider giving the gift of life. Please consider giving another family more time and memories with their loved ones.

When you miss something you shouldn't

It felt like home I guess you could say. Something that was there, constantly. A comfort.

All my life I had a heart murmur. I had my own stethoscope and I loved listening to my heart. I loved hearing my mumur. I knew exactly where to put the stethoscope to hear it best.

When I went into heart failure (though at the time I didn't realize it was a heart failure) my heart got enlarged. It dilated and it was up against my breast bone. It made walking very painful, but I could just lightly lay my hand on my chest and feel my heart beating away.

Appearntly you shouldn't feel that.

After surgery my nurse realized you could no longer hear my murmur. She let my mom listen and then gave it to me to listen. (and I mean this was RIGHT after I woke up, I still couldnt see anything). I imediatly grabbed it out of her hand and moved it to the perfect spot where it was best heard. But it was gone. And in the moment, my world crumbled a little.

Eventually after being released and going home I realized I couldn't lay my hand on my chest and feel my heart anymore. I couldn't help but cry. Not only did I just have my chest cracked open, but two things that comforted me so much where taken away.

I know its best they are gone. They weren't good. I get it. But they where reminders, that I am alive. No matter how rough the day was, my heart is still beating. To hear that murmur, to feel my heart beat, it comforted me. It reminded me I'm still alive and kicking. My heart is seriously messed up, but yet, its still beating away. So no matter how bad and messed up the day was. I can carry on.

And now that's gone. So what do you do when you miss something you shouldn't?

we meet again, coumadin.

It's been 2 years and 3 months since the last time I've been on coumadin. At least.. something along those lines, I was taken off in December of 09, 6 months after OHS.

I never liked coumadin, only for the simple fact that I hate needles and blood. That's why in September of 2011, I found out the maze procedure failed and I would need to be on blood thinners again, I got sad. Well maybe not sad, it is just a stupid pill after all. But I wasn't happy about needing it.

But then they told me about this wonder drug. A blood thinner that didn't need monthly blood checks. Pradaxa. I was quite excited. WOOHOO for no more blood draws! But once I got out of the hospital I noticed some side effects. At first it wasn't to big of a deal, but then it got worse.

Lightheadedness
Seeing Spots
Near Constent Headaches
Unecplained Joint Swelling
Extreme Exhaustion

At first I thought it might be another drug (TIKOSYN) that they started at the exact same time as the Pradaxa. But then a friend on FB, another adult CHD messaged me saying that he had these same symptoms when he was on Pradaxa and had to be taken off. So I looked into it and brought this info to my primary care doctor. We decided it would be best if I ween off the Pradaxa and back onto the rat poison (coumadin).

Yes coumadin is what rat poison is made of.

And you know what, after all the side effects of Pradaxa. I'm okay with needles now!

So heres to hoping I start to feel better! He also even put me on a new pain med cause I'm only allowed tylenol and tylenol doesn't do shit for me!

*fingers crossed*

Baby Adam

Babie's shouldn't die, yet, they do.

Let me introduce you to this handsome little man. His name is Adam. Or as some called him "Baby Adam" or "Bubbi."

Friday the tenth at a little funeral home in Saint Helen's Oregon a bunch of people gathered to celebrate this litte babies life. Why? Because he went home to be with Jesus about a week before. Let me tell you a little about his life.

Adam was born June 6th, 2010 with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).

Adam was able to hold out til he was 6 weeks old before his first open heart surgery. And shortly after he was put on the transplant list. Adam has his set of complications but at 15 months, September 2011, Adam got his miracle heart. Adam did okay but had complications. He was able to make it home one last time for Christmas with his family. In January Adam got an infection and on the night of January 28th, 2012 Adam went to be with Jesus.

Adam proved stronger then anyone thought, making it to 6 weeks before his first surgery proved to everyone how much a fighter he was. He touched many lives, especially mine.

Adam was a true CHD warrior, now he's a beautiful CHD angel. He is loved and missed by everyone who knew him, and even by many who never got to meet him.

Down on my knees, I thought I was stronger.

You know I'm not quite sure what this post is about, I just know I need to write. So here it goes I guess.
All my life all I've ever wanted was to be normal. And yesterday I got the reality check that said, "haha never gonna happen!"

I have an infection inside my belly button. It's been there for a few months, but I finally decided to get it looked at. Because I've been tired and had swollen joints and a rashed showed up they decided to test for endocarditis and call my cardiologist. And this is where it gets fun. All the labs and everyting point to it NOT being endocarditis. But my cardiologist decided to voice concerns about the way I'm living my life.

Let me just say something right off the bat. I've had a doctor and a nurse both look at the infection in my belly button and tell me it has nothing to do with the piercing and that the piercing is clean and not infected. Sure I have tattoos and piercings, and sure, maybe they arn't the best idea for a CHDer. But my tattoos and piercings have NEVER gotten infected. Because I know how to keep them clean. And let me say something else. I've never gotten an STD before either. Because I'm NOT STUPID! Yet here my doctor is calling me an idiot because of some of the choices I've made. And what hurt worse? He called me an idiot for some of the things I ALREADY regret. If I could take certain things back, I would, but I can't. As much as I'd like to, I CANT! I've been working with a therapist for months now. He's helping me understand that some of these decisions are because of the borderline personality disorder (BPD). He's helping me with knew medication and counsling me on how to get my life back on track. And I am trying my hardest!

Which brings me to another point that I feel I need to talk about. More for my own comfort. I need to get it out. I've been on "happy pills" for a few months now and things have been going well. Until recently, the depression is back. I've been so depressed, I've hurt so bad that I've wanted to break something. I want to break something just so something will hurt as bad as I do! I wont deny it, I've thought of hurting myself too. Of falling back on something I use to do years ago. Falling back on a horrible habit I'm ashamed of, a habit I never want to go back to. But at times like this, its the only thing that seems logical. Because I hurt so bad, I need a reason to hurt. I've tried everything to distract myself and nothing seems to help. Coloring is the one thing I can focus on for longer then 5 minutes. But at times it doesnt last. My newphew is one of the only things that can make me smile. But when he's gone, these feelings come back. I took him sledding for the first time today, and it was fun. But as soon as I came home, I wanted to cry. I thought I was stronger then this. I thought I was better. I sit here, and I have an IV in for antibiotics. I have two more rounds and all I can think about is how much I want to pull it out, crawl into bed and hide. All I want is to be done. Is to not to have to do this, any of this anymore. To be free. To be normal.

Me a transformer? No thank you.

I've had a bunch of weird nightmares since my last open heart surgery. Nightmares about heart lung transplants. Nightmares about the earth slowly crushing me. Nightmares about an old lady hiding snakes in her tree. Random dreams. Just something to scare me enough to wake me up.

Recenetly these nightmares have a reoccuring theme. Never the same dream, but always the same theme. Being wide awake during a procedure. Wide awake during a heart biopsy where I felt them tearing a part of my heart out (which was very painful btw). Wide a wake during a cath where I could feel them cutting and inserting the tube thing they use. (again very painful)

Well this last dream had the same theme, to a point.

It started as something completely different. Something so weird I knew it could never happen. But suddenly turned into an operating room nightmare. There was an old lady in the OR who was having some sort of foot surgery but for some odd reason she couldn't be put fully out. So she was just very stoned. I appearntly was donating an artery from my foot to her's. (or something along those lines, I'm not exactly sure).

I told them I wanted to be put fully out, but they came back with "she cant be, why should you be?" So I went on to tell them, I've had open heart surgery, and had nightmares about being wide awake during procedures, you will put me to sleep. They didn't buy it. I even got my mom to come in and explain to them. They said okay, shooed her out of the room then tied me to the table. My mom came in, untied me and I ran. This is where the fun part begins.

Appearntly the OR was in a walmart, because I was all of a sudden running down the isles of walmart. Every one there who had any sort of medical implant like fake knees, hips and whatever else you can have fake, and even the people on crutches, where turning into transformers. And these transformers where evil, chasing after me wanting to take me back to the OR. I swear this was a disabled peoples walmart because everyone was a transformer. And I was running down an isle when it hit me. My pacemake is going to turn me into one of these things any minute now.

As I continued running I just knew it was a matter of minutes. But I finally made it to the exit and that's when I realized I was dreaming and I managed to chant "wake up wake up wake up" enought to wake myself.

This has got to be one of the weirdest heart related nightmare I've had.

I really don't ever want to be a transformer

OHS: Pt.3: Cardiac Cath

The days leading up to the cardiac cath where some of the best of my life I guess you would say?
I had just got news I needed ANOTHER life saving heart surgery, I was worried and all I wanted to do was have fun. So I did. I spent a lot of time with my then boyfriend. Those day's where also difficult. My symptoms where getting worse. Everything got me out of breath. My chest hurt a lot.
I spent a lot of time on the phone talking to nurse Julie. Setting up plans and preparing. About two days before cath I had to set up for a room at the Ronald McDonald House of Boise.
(Have I ever mentioned how much I hate talking on the phone?)
Those two days are a blur of memories. A blur of my boyfriend and I hanging out. A blur of chest pain. I remember the day before going to Boise I went to my friend's house to hang out with her. I remember dropping my phone in the toilet. (Just like me to ruin a phone before a 3 hour trip through the Mountains.) Then having to stop by the Sheriff's office (where my mom worked) at 11PM to tell her my phone had died. Then rushing home to finish packing and put the phone in a bag of rice to see if I could dry it out. And of course to try and get some sleep.
The next morning was hectic. Running over to my brothers house to see if he could fix the phone because I couldn't get it to turn on. Then finding my old phone that I had before I upgraded. Once I finally got my sim card in my old phone and turned it on I found a message from the doctor who was going to do my cath. From then on it was a bunch of phone tag between me and him.
Phone tag, checking into Ronald McDonald House Boise, shopping at the Boise mall, getting soaked in the rain, more phone tag, dinner at red lobster (but I couldn't eat I was too nervous) and then finally meeting Dr. Womack.
Dr. Womack was, is, an AMAZING man. He met me down in the entrance of St. Luke's Children's Hospital. He explained everything he was going to do the next morning. He then described my heart defect and the surgery that was needed. He even explained everything a tenth time when I began to cry and said I still didn't understand.
The next morning was slow. I remember waking up and going to the hospital and having to sit in the entrance until a orderly would come down and take us up to 3 telemetry. The wait seemed like forever. I remember playing on Facebook on my phone, trying to pass the time. I was so anxious. But finally he came and I got to go upstairs. I got into my gown, I answered all the questions about what I'm allergic too and did I eat that morning? (No of course not, you told me to fast!) Finally doctor Womack came back in and did a physical exam to check my liver and other organs while the nurse put in my IV. That's when nurse Julie came in! She gave me a big hug and said "I feel like I already know you!" She was amazing! Soon it was time for the good drugs. The anesthesiologist then began to ask questions (boyfriends name?) and was sad when mom already knew the answers. Soon they where wheeling me to the cath lab.
I don't remember this, but this is what I was told. The anesthesiologist tried to get me to princess wave down the halls. He was appearntly hilarious to watch. I refused to princess wave. (thank goodness!)

I remember waking up in recovery, coughing so very hard. My throat hurt. I turned to nurse Julie. I was very thankful she was still there. Waking up to a familiar (okay, I only met her a few hours ago, but it was familiar) face just made everything better. I asked if they had to put my on the vent. They told me they were not going to, but my throat was so sore I thought maybe they did. I was right, appearntly I had a reaction to the anastesia and was coughing so hard I was waking myself up. This is when they told me I needed to be checked for asthema. I asked if they blocked veins like they said they might (nope they didn't).

After that all I would ask is what time is it and can I see my mom. I wanted out of the recovery room. Everyone in the room looked dead. They where just laying there, and the only reason I knew they weren't dead was because it was recovery ward. I kept having them switch me from the nasal canula to the mask because I hated the canula.

At one point I got hot and the nurse guy who was watching me walked away for a second. I considered moving the blanket until I realized I was naked from the bottom down. No one needed to see my butt. So I slowly sat up and removed the socks they put on me. At that point the nurse guy came back and gave me a weird look. Appearntly you are not suppose to sit up in recovery.

Eventually it got to the point where I was so anxious that I annoyed the nurses enough that they moved me from recovery to 3 telemarty. (sooner then they thought I would). I was happy to be away from all the sick people and to finally see my mom again! We started joking right away and I told my mom "shut up or I'll kick you." None of the doctors and nurses knew what to make of that and just stared. Eventually nurse Julie spoke up "Use your left leg!" (They had gone in through my right leg and I wasn't allowed to move it for a while.)

The rest of the day was blur of everyone not waiting for a backboard to move me to a different bed but of about 6 people just lifting me with a sheet. A blur of Julie, a blur of my cardiologist coming to see me. A blur of finding out yes, I did need surgery. A blur of meeting an electro physiologist. A blur of a nurse I didn't like a of an amazing nurses assistant name Drew. A blur of having a major headache but they wouldn't give me a meds because they couldn't find a doctor to authorize it. A blur of chugging caffiene to try to get the head ache to go away. Of being anxious and complaining about not moving my leg. Then of finally being able to move my leg and it felt so good that I forgot about the headache for a while. A blur of my mom becoming super bitch and harassing the nurses until they finally gave me some damn asprin and my prozac to help my anxiety.

And then when both kicked in, it was me and my mom joking. She helped me clean up some blood and went to throw away the tissue in the sharps container and lost her ring in it. It was then Dr Womack coming back in and saying "I hear someone is anxious and wants out of here." My reply? "Well now that I have my prozac and asprin I'm good!" He gave me a weird look and then went on to say,

"You've been a lot of trouble, are you worth it?"

I didn't even need to think, I answered

"Hell yes, I'm awesome!"

So we went to a walk so I could go see the video from my cath. He told me it was a good test, because if I was gonna, spring a leak, it's best it happen here in the hospital. He was shocked to see my right ventricle (what tiny little bit of it I had) actually trying to work. It was trying to do its job. Of course, it wasn't, it was just pushing a little bit of blood around, not at all helpful, but it was trying!

I got to go back to the Ronald Mcdonald House after that to spend another night. I remember waking up the next morning and finding another sticky on my shoulder. And then it was the 3 hour drive home to start a whole new journey.

A journey to save my life.