Thursday, August 15, 2013

Decisions, Decisions.

I want to write, I need to write. I'm just never sure what to write. But I'll just write and see what comes out.

I finally moved out of Idaho! And I'm super happy where I am, but I honestly think getting everything switched over might just be the death of me. Plus with all the moving, and having a 2 story apartment, my pain is worse then usual. But I'm in Utah, and I'm near friends so its nice. 

I think most of you who read this either follow my fan page, or are personally friends with me. But if you aren't there's some news. I dropped my rheumatologist because she just seemed, not the brightest in the box I guess you could say. I was getting super sick on the chemo and I called her asking if she could give me nausea meds. The chemo was helping, I was just so sick and miserable. She said no. She dropped my dose. Which of course meant the pain came back. The lower dose just didn't help. But I still got sick, and it was killing my immune system. I just kept getting infection after infection (respiratory, sinus, so on). I just couldn't get better on the meds. So I called her and told her I stopped them. They were making me sick and I wanted to try something else. She told me "The meds aren't making you sick, its just a coincidence" she wanted me back on them. So I thought about it for a day and decided no. So I told them I wouldn't be seeing her again.

Thankfully I found a new rheumatologist who came highly recommended, who is actually in the town I moved to! I found him online, and I asked a friend about him. Apparently her friend use to work with him and says he's amazing! I found myself a new primary here also, and when I mentioned I was going to a new rheumatologist in October, someone over at the budge clinic, he immediately asked "Dr. Walker?" and when I said yes, he said how amazing he was. So I'm super stoked to meet this Dr. Walker. It sounds like I found the right doctor!

But I've been thinking. I've been thinking a lot about what I want and don't want and I've decided that I'm going to tell him I refuse to do the chemo again. It just makes me so miserable. I feel worse on it, then I do off of it. I understand it helps slow the progression of the disease, but I just don't think I can take it anymore. I'm hoping he will have other suggestions on things we might be able to try, but I understand I'm complicated. It wouldn't surprise me if he said there was nothing else. I know a lot of the meds taken for autoimmune arthritis you cant take if you've been treated for heart failure. Which I have.

I'm really hoping he can help me, but I'd honestly understand if he couldn't. I just hope that if he cant, he can recommend someone for pain management. I hope no one thinks I sound like a drug seeker. But I hurt, and I don't want to keep hurting so much.

Thursday, July 4, 2013

My last 4th of July

4 years ago today, I was certain it was going to be my last 4th of July. My last holiday, period. I wanted it to be amazing, 4th of July is like my families Christmas after all. So my brother and I made a trip to Wyoming to buy fireworks to make it AWESOME. I remember the day, it was the day Michael Jackson died. Goodness the drive was horrible because they played all the crappy MJ songs and none of the good ones I knew! And we had no CDs! It was a good day though, I was slowly ticking off things on my bucket list. No one really knew what I was doing. I never let anyone know I was going to die.

Everyone felt HORRIBLE about surgery being done at Primary Children's. Everyone, my mom had a bad feeling, my grandpa. On the 4th of July even my best friend knew something wasn't right. She called my crying telling me "You can't die on me!" It tore me apart that this was hurting everyone so much. I even wrote goodbye letters and hid them under my computer keyboard so they would be found when they packed up my stuff.

So, we did a big 4th of July, bottle rocket wars and all. It was so much fun. I didn't really participate in the war because I couldn't run. I was in heart failure, and my heart was dilated and up against my breast bone. I was in so much pain and so tired. But I had fun. It lasted well into the night. The next morning we got up early and headed to Utah.

One of my bucket list items was making a road trip with my brother. Utah wasn't a big road trip like I really wanted, BUT, it was a road trip. I couldn't do any other kind, I was to sick. So on the 5th of July we headed to SLC, we stopped at Lagoon on the way. Spending the day with my brother was awesome. Riding rides was awesome. I didn't last very long, we only stayed a couple of hours, but it was worth it.

Things happened, surgery was changed, want to know how? Read here and here
After surgery was changed, I felt so much better. I met with the new surgeon and I just knew, I would be okay.

My brother worked so hard to make my "last" 4th of July  an amazing one. I'm so happy I won my disability case and got paid so I could make this 4th of July and amazing one for him. I couldn't do a lot, but I was able to do some.

I'm so grateful for my life and family. I'm such a blessed person.
I'm glad I have many more 4ths to come. 

Sunday, June 23, 2013

Let's Day Dream

So I wanted to write, and I had no idea what to write, so I asked my facebook friends for suggestions. 
My friend asked me: What would your life be like if you didn't have a CHD?

At first, I didn't think I could answer that. This is all I've ever known, and you know what, it isn't a bad life! Its actually really good! I may have days where I hate it, but its brought about so much good in my life and I couldn't imagine life without it. 

But then I started day dreaming.
What would life be like!?
Maybe I'd be married, and maybe I'd be a mommy. 

Maybe I'd be running marathons! In the past year, all I've wanted to do was be able to run!

I know for sure I wouldn't be in Idaho. I would have a full time job and living on my own, maybe in Chicago. Salt Lake and Spokane wouldn't even have been an option. 

At that's when it hits me, knowing those places wont be an option. I can't imagine never meeting all the wonderful people from Spokane and Utah. I can't imagine never know all the wonderful CHD families I've met in person, and online all over the world. 

I stop day dreaming. If I can't know these people, and I know for a fact I wouldn't know them if I didn't have a CHD, I don't want to imagine.

CHD is hard, so very hard. Its scary, and at times, its a true nightmare.
There is so much heart break in the CHD community.
But at times, there are triumphs to. And those we celebrate. 
There are things I cant do, that I really wish I could. But, its my life. 
There is so much love and support in this "heart family" 
I wouldn't want it any other way.

Tuesday, June 18, 2013

My Advice to CHDers: It's okay.

I've had a lot of CHD parents I met, in person and online ask me "What advice would you give me?"
Recently I visited a mom in the hospital who asked that exact question. My answer is always, "treat them normal, they will know their limits." I also added to my advice, "You will never regret fighting for him (her). (S)he is worth it." It made me start wondering what would I say to a CHDer as advice. I thought about it for a while and I think I figured it out. So here it is.

It's okay.
It's okay to be scared. CHD is very scary and it is OKAY to be scared. There is a quote I like, before there can be courage there must be fear. 

It's okay to cry. Tears are not a sign of weakness, tears are a sign of weakness leaving your body. It is 100% okay to cry. Some days you might hurt, or be scared and all you can do is cry. That is okay!

It's okay to not like your scar. Some CHD parents say that us CHDers should be proud of our scars. Personally, I am, I like showing off my scars. But I do understand what its like to not like it. Because as I kid, I didn't like mine.  I understand how it can bring back memories of a really painful time in your life. It's okay to want to hide it. Its okay to not want to show it off. Its also okay if you do want to show it off.

It's okay to be angry and wonder why me. Life isn't fair, we learn that at a young age and its okay to be upset. Just know God gave you this special heart because you ARE  strong enough to handle it.

This life is hard, and its scary. You will learn your limits and there may be a few things you cant do because of your heart. But know your heart doesn't define you. You have CHD, CHD does not have you.
Your life can and will be AMAZING! 

Friday, February 22, 2013

A Promise Left Unkept

It's not that I didn't want to keep it, because boy did I. I would have loved to keep it. But I didn't get to.

 -Kylie and I-

I've mentioned Kylie on here once or twice before. I loved to visit Kylie when I was in town for my appointments. She had a beautiful smile, sass that could fill a room and contagious giggles. The first time I visited Kylie I was made to make a promise. A promise to come back the very next day after I had my "lub-a-dub" checked out. Lub-a-dub was what Kylie called her heart. Kylie was patiently awaiting a new lub-a-dub (heart transplant). So as promised I went back the next day. And we compared out stickies because I was wearing a 30 day event monitor. 

 -Kylie and I comparing stickies-

Those two visits were fun. We laughed a lot. Kylie thought it was so funny that if we took my lub-a-dub and her lub-a-dub and put them together we'd have a full lub-a-dub. When she saw my stickies she asked me why I had it and I told her my lub-a-dub was sick too. I told her this yesterday, but seeing the stickies really made it dawn on her, and the smile was priceless. At the end of that second visit I made the promise I'd never get to keep. I asked Kylie how she'd like it if once she got her lub-a-dub and she felt better, I'd come back and play with her. She said okay and I promised her I would. 

I visited Kylie whenever I was in Salt Lake. Each visit was a little bit shorter. Kylie was shy, and not feeling good. But we still had fun. She let me sniff a book with her. And we played a little.
My last visit was in November. She was in the CICU by then. When I arrived a nurse was drawing blood and she was in a chair with her back towards the door. I gave her mommy diet mountain dew and she was grateful because she hadn't been able to find one all day. I told Kylie that once she was done with the blood draw I had a gift for her. I talked with her mom about how my appointments went and how Kylie was doing. Kylie kept turning around looking at me, like she remembered me but she was shy. So I just stood there behind her. Once the nurse pulled out the tube Kylie immediately turned around and said "she's done!" The nurse hadn't even stood up yet but Kylie was ready for her gift.

So I walked around and crouched in front of her and noticed how swollen her body was it broke my heart. But I put on a big smile and held out a gift card and asked if she knew what is was. She didn't. I said I knew she recently got an Ipad that all her heart family pitched in for, and I knew how much she loved it. So I gave her a Itunes gift card so she could go on a shopping spree. I gave her the gift card and told her I wanted her to buy whatever she wanted that mommy said was okay. Mommy said Kylie got what she wanted and I smiled. I told Kylie and her mommy I was glad I got to see them and left not wanting to intrude to long. 

About 2 and half months later Kylie passed away. She got the ultimate lub-a-dub in Heaven. And that was the end of the promise. I never got to go play with her again. My Salt Lake visits will never be the same. I went to the funeral and got to say goodbye, but I'm heart broken. That was one promise I really, really wanted to keep. I miss that beautiful girl.

Wednesday, January 9, 2013

Question and Answer

So I felt the need to write, but had no idea of what to write about. So it's question and answer time!

What does your o2 saturation's run and what daily medications do you take?
I'm not sure what my sats were as a child, but after my fontan revision (7/24/09) they were 98%. They stayed that way for about 2 years. Recently I've noticed they are usually 93%. 95% on a good day and around 91% on a bad day.  
My current med regimen is; Digoxin (a med to help my heart), Celexa (anti depressant), Asprin, Zantac, Potassium, Coumadin, Coreg (beta blocker) 2x daily, Tikosyn (a med to keep me out of Afib) 2x daily, Lasix, Buspirone (anti anxiety med) 3x daily as needed, an allergy med, and folic acid. I also inject methotrexate (a form of chemo) every Friday evening. 

What do you remember from surgeries as a child and day to day living? Do you remember having any pain? 
My last childhood heart surgery was done before I was 2 years old.  So I don't remember it. I had my last heart surgery when I was 19. I remember that one, and honestly there was pain. Coughing was the worst. But they keep you well medicated, or well my doctors did, and honestly it wasn't as bad as I thought it would be. 
As for the day to day living, honestly it wasn't bad. My mother raised me "normally" just like she did my healthy brother. I was like any other 5 year old, 9 year old, 13 year old, and so on. There really wasn't any pain, except for the normal fall off the bike, scrapes and bruises. There was one point in time where I had a lot of stomach aches and they thought surgery flipped my stomach. But all the tests came back normal and eventually the stomach aches went away. 

You've been diagnosed with borderline personality disorder... Jessica what exactly is that?
It's been almost 2 years since diagnosis and I'm still not 100% sure how to answer this. So I will use a little help from my friend

"Borderline personality disorder (BPD) is a mental health disorder that generates significant emotional instability. This can lead to a variety of other stressful mental and behavioral problems."

It, along with my bipolar, effect my moods. I have mood swings, anger issues, self image issues, and anxiety issues. As my mother says, I have violent mood swings. I can go from being happy to ragging mad in a matter of seconds. I also had issues with my weight when I was a teen.

How to deal with "almighty" Doctors that don't share all his knowledge because they think you wont understand more detailed info.
I've had a lot of doctors who didn't tell me the whole truth.  I've learned to ask questions, lots of questions. I read my medical records and if there is something I don't know I ask. I found an old EKG that had stuff I was never told. I called the doctor out on it and he got mad. He dropped me as a patient. It is okay to get second opinions. If your doctor isn't telling you the whole truth, its okay to find someone who will. Make sure your doctors know you want to know everything. The good, the bad and the ugly and if they are good, they will comply.

I would like to know how long you were cheer-leading as a kid?
I must have told you the story about the pom pom extravaganza I did when I was little. It was one day. I never actually was a cheer leader. But I did do gymnastics when I was little. I wasn't very good and I only did one season (I just that's what you'd call it??) It had no effect on my health what so ever. I did play soccer a little bit when I was little. My mom pulled me out during the first game and never took me back because the running was effecting me to much. As a teenager I did drill team (dance) in my high school. I had to have a physical and have the doctor sign off on it so I could do it. He didn't want to sign, he didn't want me to dance (or even participate in PE for that matter). But I talked him into signing. He signed and told me I was only allowed to dance NOTHING else. It was fun and I loved it. I got tired quicker then the other girls, but other then that I was fine.

 Did you have many limitation and as you grew up how did that affect the choices you made?
I got tired quicker then most. I got sicker easier and the heat also made me sick. But that's really the only limitations I remember. I didn't play team sports because I just got to tired, but that was fine by me. I'm not really a team sports person. I've known my limitations since I was really little. I'm okay with stopping and resting when I need to and going to the AC when its to hot out. It never really affected any of my choices until I decided to drop out of college. I wanted to be a kindergarten teacher, but I get way to sick to be around that many kids everyday.

Are you okay flying?
I am perfect flying. I never had any issues at all.
I do have a pacemaker so I can't go through the metal detectors and have to get patted down, but that's the only "issue" I have. 
Also, because I've seen this asked a lot, sternum wires do not set of metal detectors.

Can you have children?  
I've had some doctors tell me yes. It will be hard, I'd need to be followed very closely by a cardiologist and high risk pregnancy specialist. I'd also need to have a c-section.  
But I've had other doctors tell me no. Not only would it be to hard on my heart, it could possibly kill me and the baby. Plus I'm on medications that can cause very serious birth defects.
I think it really just depend on the person. I've made the decision to not even try. I will adopt when the time comes.

Have you had the fontan? If so, do you do yearly checks for your liver and kidneys and when did you start doing this? 
Yes I've had 2 fontans. My original fontan was at age 1 1/2 and my revision was at age 19. Every visit we do blood work and they always check my liver and kidney levels. I've heard of some fontaners having MRIs on their liver but I have a pacemaker so we cant do that. We stick with the blood work.