Friday, May 25, 2012

Gowns, and Needles, and Pacemaker Leads -- OH MY

So I thought about saving this post till after I got home, but I decided I needed to write. Get it all out. I came down, or maybe up, lol I'm so bad with directions. So I came down to Salt Lake City for my Rheumatology appointment and my six month cardiology check up.
Let me just say, this is the first time since 2008 that I made it six months between cardiology visits. I'm quite happy with that.

So as I said, I am the definition for directionally challanged. But I made it into Salt Lake and to my hotel without getting lost! Thank to my mom and google maps idiot proof directions. So I check in and go to meet a little boy who is in the hospital waiting for a heart transplant. I did not find Primary Children's Medical Center as easily. But I got there, and I found his room and I got to meet this sweet little boy. 

Anyways. Today was my appointments. After fighting with insurance having to get them to change the name on my card, which they misspelled I got called back. Almost right on time. My Rheumatolgoy appointment took about 2 hours. They asked a bunch of questions and then made me get into a gown for a physical joint exam
(sexy gown right!?)

And I got my diagnosis, Spondyloarthritis, which is an umbrella term, there are a lot of diseases that fall under it. Specifically, Psoriatic Arthritis. They found a patch of Psoriasis on my scalp. This Psoriasis that I didn't even know I had, caused the auto immune disease, Psoriatic Arthritis. Which is what is causing my swelling and pain.
(You have no idea how happy I was to finally know what the heck is going on)

So they ordered a bunch of blood work and xrays and hopefully I will be able to start my new medications on Tuesday. The medication I'm going to start is used to treat cancer, just a low dose of it. I asked "Will my hair fall out" they told me its a possibility but they are giving me folic acid to help prevent it. Fingers crossed I can keep my hair. I'll see them again in 3 months.

So I go have my xrays about 11 or 12 of them. I wouldn't be surprised if I turn into an awesome super hero. I took the led vest off before the xrays where done cause it was just to heavy. So I expect any day now I'll morph. My xrays took so long I barely had enough time to scarf down 2 bites of mashed potatoes before I needed to be in cardiology.

Cardiology went GREAT! NO HEART FAILURE! I go back in 6 months for a routine check-up and echo. My DR did want my pacemaker checked out though, even though that wasn't on my shedual. So the lady came down and interigated it. Which is where the first little bit of bad news pops up.

Appearntly the lead is showing a lot of noise. Which means it isn't reading right. Sometimes it reads that there is issues and paces because of it when there was really nothing. Sometimes it doesn't pace when it needs to. My doctor said its a mild to moderate problem. We need to keep an eye on it. He wanted me to come back in one month, but I wont have the gas money, so I'll come back in three since I see rheumatology again in three. One visit less gas.

My doctor also told me that it would be best, and easiest for him to see me in Salt Lake. So we are officially moving are my heart care to utah.

All in all, not a bad day. I'm quite proud to say I broke my record of viles of blood. My high is 6, but today rheumatology wanted 7 and cardiology wanted 2. I was quite excited!

 Two unexpected turns, I'm still having issues getting my mind around having Psoriasis. I was prepaired for the auto immune disease, but I was not prepaired for a skin issue.  It will take me a bit to get that through my head.
As for the pacemaker lead, that was unexpected. But I can deal with it. Another surgery might be sooner then we imagined to replace the lead, but thats okay.

I've got this.

Tuesday, May 15, 2012

A Letter To My Father

Dear Dad,

I wrote you a letter years ago, but I figured it was time again. Anyways I lost the original letter. So I guess here goes.

I'm mad at you. You left me when I was only 11. I wasn't ready for you to go. We didn't have enough time to prepare. You where healthy, in remission, and then on day you got a cold. That night at 12:01 am, you where gone. Dead, never coming back. And I was left behind without a father.

You weren't there to give my highschool boyfriends the "father with a shot gun" stare. You weren't there to tell me I looked to old when I got all dressed up for school dances. You weren't there to yell at me when I was being a bitch to mom. You just weren't there for a lot of things. The little things, dance recitals, camping trips, family outtings. Just the every day little things.

You weren't there for the slightly bigger things either, Christmas's, Birthday's, Fourth of July's and every other special day.
And you weren't there for the really big things. My heart surgery. I really would have loved to have my father there. To hold my hand, kiss my forehead, tell me everything is going to be alright. But you weren't I had to be a blanket of your clothes with me. It was the only way you could be there, to comfort me.

There are many things you wont be able to be there for also. More birthdays and holidays, camping and family outtings. Many little things. But what truly makes me angry is, when I get married, you wont be able to walk me down the isle. I'll NEVER get that father daughter dance. And dammit dad I really want that dance!

I watch movies and see wedding scenes. The pretty dresses is what most girls focus on, but me, I stare at the dad. I cry everytime I see a wedding scene. Because those girls get there daddy walking them down the isle. The dances is what really brings the tears. Some sweet song and a dad and daughter dancing. I want that. I want that so bad.

But you know what. I'm happy for you too. You are free from pain. You are in heaven. How glorious that must be. I hated seeing you sick. Hell I hate seeing anyone sick. And now, your no longer sick. You are finally cured from the evil disease. And for that I am thankful.

And though I miss you like crazy and am upset I'll never get that dance, I forgive you.
I know if your body could have fought more, you would have. You never gave up on us, you just reached the end of your battle. You won and you went home.

I'll see you again some day.
Save me a dance when I get there.
I love you

Thursday, May 10, 2012

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.


Wednesday, May 2, 2012

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. 

Tuesday, May 1, 2012

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.