My Mother

I've decided it's time since it's almost mothers day, that I should tell you about my mother. My mother is my rock, my support, my second hero (my dad's my first.) My mother loved me before I was even born. And even more after. She's been by my side through everything. She's the one who knew there was something wrong before the doctors even did.

When the doctor told her there was something wrong with her daughters heart, she didn't give up on me, she said okay how do we fix it. She sat in waiting rooms while I was in surgeries waiting for updates. She sat by my bedside while I recovered in the hospital.  She did everything she could for me all while still taking care of my brother who was 3.

Mothers day 1991 was my moms worst mothers day. That mothers day, may 12th, I was admitted to the hospital. I needed my first open heart surgery which wasn't suppose to happen til I was 3 years of age. But I was only 1 1/2. May 13th I went into surgery and my mother and father sat in the waiting room, praying. They did the glenn, but it failed. They couldn't get me off bypass, my heart just wouldn't beat. So they had to do go to a different procedure, whose name I don't know. But still, they couldn't get me off bypass. My heart still wouldn't beat. At this point my mom and dad began to pray that if I was going to die, it would be fast and painless. But the surgeon had one last option. It was called the fontan and it was pretty new. They didn't have very high hopes for it, but it was all they could do. By the grace of God, the fontan worked, my heart finally began beating.

(My mother and me June 16th 1991)

But because I had been on bypass so long there was swelling in my brain. I had a massive seizure and they had to keep me in a coma for 2 weeks. All the while my mom sat by my bed. I finally woke up after the two weeks but still had a long way to go. Luckily I didn't have brain damage. On June 16th, 1991, fathers day I was finally able to come home.

(my mom, me, and my dad) shortly after my surgery)

After I got to come home our lives went back to normal. My mom took care of me and my brother and held a part time job while my dad worked full time. She got up every morning and made sure I got my medications and my brother and I ate. She did everything a good mother did. Once a year she drove me to Chicago for my yearly cardiology appointment. When I was around the age of six my dad was diagnosed with Acute Myloid Leukemia. She kept on doing what she did and began going with  him to appointments. She took care of not only me and my brother but now my father too. She held the house together when my father was in the hospital. She was our rock. After my father died she took on another roll, mother and father. She held us all together, comforted me and my brother and worked. She was strong for all of us.

When I got out of control as a teenager (we didn't know about my bipolar or borderline personality then) she did everything she could to try and keep me under control and help me. We fought a lot, but she did it because she cared.

(my mother and I 2008 highschool graduation)

Eventually things got better. As we entered a new stage of life, things got even rougher. I hadn't been feeling to well for around a year, so in late 2008 I had a cardiology appointment and found out I needed yet another surgery. I was in severe heart failure so I moved back in with my mother. She supported me and gave me a place to live yet again. She was nervous and anxious but tried to never show it and just support me.

( my mother and I early 2009)

As we waited, she did everthing she could for me. And finally surgery came. July 24th 2009. She was by my side the entire time. She came every morning bringing me whatever I needed. She helped with everything. She even had to wash my hair for 6 weeks. And she did it without complaint. She made my bed, and did my laundry and did everything for me for those 6 weeks.

(my mother and me, mothers day 2010)

In September of 2011 I was admitted to the hospital here in town the day before she had knee surgery. The day after she had knee surgery I was transfered to Salt Lake City and she got in her car, had her mom drive so she wouldn't mess up her knee and was on her way. She came to visit me every day of 4 day stay even though she had to use a wheel chair to get around.

As the time has passed she still supports me. I live with her while I fight for disability. She pays for almost everything and is happy to do it because I'm still here. I know one day I'll be able to pay her back, but right now it just sucks. I'm 22 and she shouldn't have to do this for me. She is amazing. I've recently been in constent pain. I see a rheumatologist on the 25th and pray they can figure it out and help. But while I wait she has been a huge help. Even though she has constent back pain and had knee surgery she still tries to make sure I'm okay. When I wake up in to much pain she brings my pills to me so I don't have to get up.

I cant say enough good things about her, she is awesome, strong, beautiful and so much more. I love her.

 

How Calling a Doctor a Jackass Saved My Life.

I was talking to my friend Ashley today about her son's upcoming surgery and how much of a nervous wreck she is. So I started telling her how nervous I was while waiting for my surgery. And then we came about the story of how calling a doctor a jackass saved my life. So I decided to share with all of you. 

Late 2008 I found out I would be having my surgery at Primary Children's Medical Center in Salt Lake City, Utah. Every day leading up to the surgery I just felt this horrible unease. My mom and grandpa felt it too. No one liked the fact I was going to have surgery, there. But of course, they didn't say any of this to me. And I continued to wait, steadily feeling worse about it all, until finally I realized what was wrong. I KNEW I would die. I KNEW I'd be seeing my dad again soon. I was really reluctant on telling my mom this, but eventually I just couldn't keep it in any longer.

Everyone tried to be supportive telling me everything would be okay, until one day I yelled at them. We didn't know thing's were going to be okay, and I honestly believed they wouldn't be. But still, we didn't do anything about it. We waited and waited. I decided to read My Sisters Keeper by Jodi Picoult to pass the time. That was a bad idea. At the end of the book I broke down and cried so hard. That was the night I decided to write notes to everyone I loved. 

I wrote a note to my brother, my mom, my boyfriend at the time, my grandma, and my best friend. I hid them under my computer key board knowing eventually someone would pack up my room and find them. Finally the day came, we left for Salt Lake. 

About a day or two before surgery the hospital called telling me we had to postpone surgery because I haven't had my pre-op testing. This made me mad, they never even told me to come have it done. They where going to make me wait even longer. And they where bumping up someone else's surgery. Those poor people, what if they weren't ready!? But I did as they send and we immediately went over to Primary's to get the pre-op testing done.

This included 2 echos, blood work, EKG's, all the normal heart stuff. It also included meeting my surgeon and the cardiologist in charge of my case. Now as much as I'd love to name names and call them out on how horrible they where to me, I wont. Because I know I have some friends who might read this who go to these doctors and like them. And I don't want to get in trouble either.

So anyways I met the surgeon first. He came into the room shook all three of our hands (my mom, me and my brother) and got right down to business. I could tell right away I didn't like him. He didn't have a very good bedside manner and he was very rude. He told me I couldn't have kids and I asked a simple question. 

"What is life without kids? Whats the point?"

Cause you see I've always wanted to be a mom. That's all I've ever wanted. When he answered he wasn't even a little bit compassionate. He was down right cold actually. I asked again and he said the same thing. I could tell I wasn't going to get any more out of him. He went on talking about the surgery and it seemed like he was rushing. So eventually I stood up, shouted, "You know what!? You're a jackass" and stormed out of the room.

It took my mom and brother a couple to seconds to realize what happened and follow me out. I ran past the nurses station bawling (I cry when I'm angry) all heads turned to look at me. Finally they caught up and calmed me down. Eventually we went to meet with the cardiologist. She told me I was in severe heart failure, I could drop dead any second, and without surgery I didn't have more then 5 years to live. 

Oh and they would no longer do the surgery.

So we left and called the doctor. I was freaking out and wanted to give up. But eventually he got me in with a surgeon in Spokane Washington. We went there and met him a few days before surgery and did my pre-op. Once I met him I felt comforted. I knew I was going to get through this. 

My open heart surgery was done July 24, 2009. Dr Worrall, an amazing surgeon at Sacred Heart Medical Center and Children's Hospital, performed it and did a wonderful job. After surgery was finished he talked with my mom and told her that he had to hook me up to the heart lung machine and just let me sit for half an hour before he could cut in. My heart was so swollen and up against the breast bone it needed to rest and un-swell a bit before anything could be done. If he didn't let it he would have cut right through the heart and that would have been the death of me. 

And now we know why I would have died in Primary's. The self confident surgeon wouldn't have waited, he would have just cut right in and killed me. 

Waiting for a date, yet again.

I live in a world where the government just doesn't seem to want to let me succeed. 

October 2008 I found out I needed another life saving open heart surgery, so I immediately applied for medicaid. I got denied with this exact quote "Idaho medicaid has NOTHING to do with your health." So I applied for disability. I needed some way to pay for my surgery. I got denied right away and appealed. Yet another denial. I cant tell you how many times I got denied before we decided to go to court.

All the while I had my surgery. My doctor wanted it done as soon as possible. My heart failure was bad. And I went into debt, about half a million in debt. Months turned into years of waiting. I had to file bankruptcy because people where threatening to sue. 

Mid 2011, 3 years after applying I got the notice that my court date was set. August 3rd 2011. I was excited, and nervous all at the same time. What if I lost? These people had my life in their hands, its a very stressful experience. August 3rd finally came and I went to my court date. As soon as I got there my lawyer was waiting had good news for me. The judge reviewed my case and knew right away he would give it to me. We didn't have to go through with the hearing, but they wanted to, because my lawyer had a trainee with him and they wanted to let her practice. I was just so excited I won I didn't care I had to go through this fake hearing. 

I got home and started waiting for my first payment, they said it could take 6 months. But it never came. What came instead was a letter from the social security administration (SSA) saying they where appealing my case. So I waited about 7 months and nothing happened. Until today. 

I talked to my lawyer today (finally) turns out they had my number wrong that's why they hadn't called back. We talked, and she said yes, I won my first case, and yes sometimes the SSA do pull cases and review them to make sure you still deserve your money. But she has never seen them do it this fast. They pulled my case only 2 months after winning. This has never happened before. I asked her how long I will have to wait for a hearing and if there is anything I can do to speed this up. I have been waiting since 2008 after all.

She couldn't even tell me an average wait time because again, this has never happened before. So I sit here in the dark and pray. Pray I get a judge who understands how badly I need this. Pray someone wants to help me. Pray I can win and finally get my life on course. Pray that soon I'll get money and be able to live on my own again.

Pray that I have the strength to do this all over again. 

Trust.

It's one of my major issues.

I've had issues with trust ever since I was a little girl. I never liked going to the doctor and whenever I did, they always seemed to lie to me. "Oh this wont hurt" - Bullshit! I still have issues trusting doctors to this day. After my open heart surgery I still new something just wasn't right, and for 2 years, 2 horribly long years, my cardiologist and electrophysiologist said I was fine.

I took it upon myself to start reading all the medical records I had, which took me forever to find. But I came across terms I've never heard before. A bunch of EKGs that suggested I had an issue I never even heard about. I sent my cardiologist a copy of the EKG and a letter asking him what the hell was going on and why I wasn't informed of any of this stuff. And I kept reading, while waiting for a responce.

-Left Ventricle Hypertrophy

-Sinus Bradycardia (that explains the pacmaker)

-My shunts had stenosis

-Mitral Regurgitation (I personally asked him at an appointment what was up with my mitral valve and he said he didn't know but it was doing something funky)

-PVC's and SVE's

So many things never mentioned to me. I know before my open heart surgery there was a lot going on with my heart. It was dilated, appearntly everything in my heart was dilated. Maybe they didn't want to tell me everything because they didn't want to scare me. But I'm a person who likes to know whats going on with my heart, everything that's going on with it. I mean I never even knew why exactly I needed a pacemaker until after I got it! That's just not okay in my book.

Well my cardiologist read my note I sent him and said it was just a routine EKG and it was fine. But because I questioned him he didn't think he would be able to work with me anymore. He dropped me as a patient. Good I was about to drop him for not telling me all this stuff in the first place.

As much as I wished I could have been the one to drop him, tell him he was a bad doctor, because I do have an anger problem and I would have straight out told him he sucked, I was just glad I was rid of him. For the past few months I had started hating him anyways so this was coming for a long time. I took it upon myself trying to find a new cardiologist. I called the doctors at Sacred Heart in Spokane, where I had my last surgery but they never called me back. So I called a local, adult cardiologist who was only an hour away instead of the usual 4. I saw him and he also wasn't someone I could see myself with. Plus he told me he couldn't treat me because he doesn't know anything aboit CHD.

So I was at a loss, until a facebook friend who told me the guy who did my heart cath, an amazing fun man who I loved, was also a pediatric cardiologist! I imediatly called him and got everything transfered over to him. I like this guy from the start and knew everything would be great. They called me back a few days later saying he wanted to send me to Salt Lake City, Utah. He knew a great adult congenital specialist there who came to boise every three months. He said he'd take me but he thought I'd be best with him.

I met Dr Green about a week later. He told me more info that I had never heard of before. I have 2 supior vena cava's. Why weren't people telling me this stuff? But I imediatly like Dr. Green! He told me the truth and seemed to know what he was doing. He set up to see me in 6 months time for another check up. But I saw him a month later after being admitted to the University Of Utah Hospital. My A-Fib was getting so out of control, my heart rate was in the 190's and I hurt so bad and it just wouldn't go away. They gave me meds to lower my heart rate but it would ware off every 4 hours, which meant every 4 hours my heart rate would shoot back up and the pain would be back.

I spent 6 days in the hospital, had a TEE, cardioversion and med change. Finally someone was doing something. I knew I had been having rythmn issues for so long, it pissed me off that it took this situation for it to be caught. If the other doctors had listened to me and did more tests and help, maybe I wouldn't have had to spend 6 days in the hospital. Once I got out and went home I read through more medical records. The Adult doctor I saw, who said he couldn't treat me, did do an EKG and Stress echo and a month long event monitor. And the results clearly stated POSSIBLE ATRAIL FIBRILLATION. Why wasn't I told? Why didn't they look into it more?

It's been about 7 months since my hospital stay. Almost 6 months since my last cardiologist visit (I cant believe I finally made it 6 months between visits! I havn't done that since before 2008!) I see Dr. Green again May 25. My last visit with him he told me I was doing pretty good. But he didn't do an echo..why not? I'm use to having a echo every visit so it's just weird to me not to have one. Something I'll definatly ask him about. He told me I was doing well, but I've been having chest pains. Something I'm sure isn't anything, probably just scar tissue. But still I get worried. He and his nurses are amazing. They answer my questions and never make me feel stupid like my old cardiologist.

And even though Dr. Green has never lied to me, I still cant trust that I'm okay, when for 2 years I was told I was fine and I really wasn't.

Lies the Doctor Told Me

So tonight I thought I'd do a fun little post.

Lies the Doctor Told Me

It will taste like rootbeer
As a kid I kept getting a lot of tummy aches so they sent me to the hospital to get a stumach test. They wanted to make sure my open heart surgery didn't flip my stumach. I had to drink a this dye for the test, they told me it would taste like rootbeer. LIARS! It tasted like chalky shit!

You'll feel some pressure
When I was having rythmn issues last september I went to the ER. They wanted to do this one test to diagnosis what it might be. They would give me a drug that would stop my heart for a second. I had this drug three times before, I knew it would be more then pressure. But I didn't say anything, maybe theirs was better. NOPE! Pressure my ass! That was the worst pain ever. When I told the doctor that he looked at me and said "well, now I know what to tell the other patients."

This will make you drowsy
Not really a lie, but they sure forgot to tell me what else the drug would do. When I was in the hospital in september I kept getting really nauseated so they decided to give me phenergan. They told me it would probably make me sleep. What they didn't tell me was that it would hit me so fast I wouldn't be able t finish the text I was writing when they injected it. Without a lot of errors that is. They also forgot to tell me I'd find myself staring at the TV with my mouth wide open, who knows how long later. They also didn't tell me that once I realized my mouth was open and my tounge was dry, I wouldn't be able to figure out how to move my tongue for a good 5 minutes.

This will make you drowsy
While I waited for my open heart surgery back in late 2008 early 2009 I got really stressed. So much so I got stress hives and had to go to the doctor to get a steroid shot in the but. They told me that the shot I got was going to knock me on my ass. So much so I wasn't allowed to drive myself home (even though I lived 2 minutes away). Liars, I was up all day!

This wont hurt a bit/ You wont feel a thing
I don't remember any specific experiences for this one but we've all been there. A doctor goes to give you a shot or do some exam and says "no worries you wont feel a thing" or "this wont hurt a bit." But it almost always does.

We wont vent you
I had a cardiac cath in october 2008. They told me all they would do. I ask if I'd be vented. They told me no, this is just a simple procedure we don't need to vent you. Liars! I woke up with a sore throat and looked at my nurse. She told me I was coughing so hard I was waking myself up. So not exactly their fault, but still.

An Update (Yeah I couldn't think of a cool title)

So I thought it time to do a little update.

The coumadin is going well, trying to get my INR in check
because its a little high, but other then that is good. I've stopped seeing
spots. I still get really light headed, but hey, thats okay! There is no spots
and I don't feel like I'm going to pass out! That's what really
matters.

I finally got my primary care doctor to refer me to a pulmonary
doctor! Today was my appointment, and I got unbeliavably lost! I made at least 5
wrong turns and was over half an hour late. But they still got me in and did all
the tests. And then the doctor came and talked to me for about an hour. He took
my history and asked a lot of questions.We went over the tests. Normal range
for lungs is 80-120 percent. All three of my tests came back to 68 percent.
Overall my lungs are functioning good, 105% of what they should be. But the
individual tests is where things go wrong. The tests do prove I have mild lung
restrictions. It is not possible for me to get a full lung of air. Its not
possible for me to take good deep breaths.
So he put me on inhalers

The lung tests show us why I can no longer walk more then half a mile. Or down a walmart isle with my nephew. He said its because of my surgeries. Hopefully the inhalers help me be able to excerise more. He even has hope that they will help my constant cough I've had my entire life. He isn't sure about the asthma, but if they inhalers dont help I go back for more testing.

Recently I've just been craving soft serve frozen yogurt. So I hit Kiwi Loco on the way home!

Heaven in a cup!

There is even more exciting news in my life right now. Wednesday 3/21/12 at 4:10pm my niece Alyssa Faye was born!

Beautiful girl terrified us not even 5 minutes after birth. She was only sating in the low 80s. Then she began crying and they dropped to 61. They whiskered her away to the nursery really fast. I was terrified praying it wasn't her heart. Luckily it wasn't. The doctor came back in a few minutes later and told us she inhaled a muscus plug. They suctioned her and she was sating 100 on room air! Thank you Lord!

Auntie Jess's first time holding her little lady love.

6lbs 13oz of love

auntie and her babies!

Little Lady Love all snuggled in aunties arms.

Life is Good!

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.