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.

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 mayoclinic.com

"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. 

Another open letter to Shaun White

Dear Shaun White,

I know a heart mom sent you an open letter earlier today. I want to say I understand exactly where she is coming from. I even shared the letter on my personal facebook page. She wanted you to spread CHD awareness, because you were born with a CHD. I understand exactly what she wants. I understand why she wants it. For I too was born with a congenital heart defect. I too am living with half a heart. I understand the complications from this life and I understand the stress. I understand we don't have enough awareness. I understand the want and need for more awareness and for big names like you to help us in our cause, your cause. But I felt the need to say, I understand you too. 

I can understand you not wanting to be apart of the CHD community. I understand you not wanting to show the part of you that you just cant control. I know what it feels like to not have any control over you body. And to desperately want and need to have control over your body. So you ignore your CHD. I know what its like to have a scar, a scar you'll never get rid of. I know what its like to wish you didn't have to take those meds and  wishing you never saw your cardiologist again. I get it, I really do. I choose to be apart of the CHD community. I love it. I love these kids and I'm glad of my choice. But I understand that you don't want to make the same decision.

I also understand that maybe, someone in your life that we just don't know about might be fighting childhood cancer. So instead of supporting CHD awareness, you support childhood cancer awareness. I get it, childhood cancer awareness is important too. My dad died of cancer, so I support cancer awareness also. 

I also understand that maybe, possibly, you know that so much has been done for you that you want to give back. But maybe you just don't know how to give back. Maybe you possibly don't know what CHD is. You see, I didn't know what CHD was until I was told I needed another life saving open heart surgery at 19. 

So you see Shaun, I understand that you might possibly have reasons that not everyone would understand. I want to say I do wish you could help us in or cause. But if you don't I wont ever hold it against you, because I understand. Maybe the reasons I listed aren't your exact reasons. But I'm sure you have one. 

I also want to say I know the heart mom who wrote the first letter. I want her to know I agree with her. I wish we could get more CHD awareness. And I hope she doesn't take this wrong. I just felt the need to point out there might be reasons behind your decision. Good reasons, I know what it is like for people to question my decisions. I'm sure you have much more of that then I ever have. You're famous after all. 

I just felt drawn to writing this. I just couldn't let it be. 

Born With A Broken Heart

I was asked by Annette, found of Born With A Broken Heart to share my story. I need a place to write it, and since Microsoft is being bitchy, I thought I'd write it here. 

My name is Jessica, but I prefer Jessi. I'm 23 years old and I am surviving CHD.  I was born October 3rd 1989. I asked my mom a lot of questions about her pregnancy and delivery with me. It was a normal pregnancy, no problems what so ever. But now looking back she remembers her doctors would always listen to my a heart beat a little longer then normal. Maybe they heard something, but it 1989 and they didn't have great technology back then. Labor and delivery where normal and I was born in the early morning. Shortly before discharge my mom was trying to nurse me and I just wouldn't wake up and eat. The nurses told her she just didn't know what she was doing, but I have an older brother, she knew how to nurse. So the doctors to me away and managed to wake me up enough so I would cry. I turned blue. My mom knew something was wrong when the doctors and nurses came back without me. They told her I had a heart problem, it wasn't anything serious, probably just mitral valve prolapse and I'd be fine. I got my first ambulance right before I was even 24 hours old. When my mom finally got discharged her and my dad came to see me, and what awaited them was a much worse diagnosis. I have Tricuspid Atresia, Severe Hypoplastic Right Ventricle, Mitral Regurgitation and a VSD and an ASD. My parents where told the ASD and VSD were the only reasons I survived my birth. I had my first surgery, via cardiac catherization at 2 day old. A balloon septostomy to make my ASD and VSD bigger so the blood would continue to flow. I got to go home a week after my birth and did okay until I was 3 months old. That's when they had to do my first BT shunt. At 9 months old I needed another BT shunt. Both where done through my back and I have scars underneath each shoulder blade. At 1 1/2 I had my first open heart surgery. I went in on mothers day and got out on fathers day. They did the glenn, but it failed and they couldn't get me off bypass. So they did another procedure (this one I don't know the name of) and again, they couldn't get me off bypass. My heart just wouldn't beat. They had one more option but they weren't sure if it would work, it was so new. But it was all they had left, so they did the fontan. Luckily it worked and they finally got my heart to beat. But a 4 hour surgery turned into a 12 hour surgery. Because I was on bypass for so long there was swelling in my brain and I had a massive seizure and was in a coma for 2 weeks. Recovery was hard, but I made it. After that I had cardiology appointments once a year and daily medications. I had a lot of issues with pneumonia and my parents had to buy their own nebulizer to keep me out of the hospital. I got sick easier then "normal" kids and I got tired faster, but I had a normal childhood. A good childhood. When I was 18 I was told I had severe heart failure and needed another open heart surgery. I had a cardiac cath in preparation and a lot of appointments where it was found out I had sinus bradycardia and atrial fibrillation. They also discovered my heart was dilated and up against my breast bone. It caused me severe pain. I was terribly sick and my doctor got me in for surgery really fast. July 24, 2009 I had the fontan revision, maze procedure to fix my atrial fibrillation, atrial reduction (they removed part of my atrium) and a pacemaker implant to help the sinus bradycardia. Its been a crazy 3 years since my last surgery. I was in a car accident in November 2010 and was told the only reason I survived it was because my pacemaker kept my heart going. The maze procedure failed and my atrial fibrillation came back about 2 months afterwards. I had a cardioversion in September 2011and we are watching it again and if it gets bad again we will try an ablation. It's now called chronic atrail fibrillation. At my last appointment my doctor told me I have the best ventricle function post fontan out of everyone he see's in his clinic, and I'm quite happy about that. I've been diagnosed with an auto immune disease and I'm in a lot of pain, but I try to keep going. There has been issues with my pacemaker and they will most likely need to replace the leads, if not the whole thing. Which means they would need to crack my chest again. But as of right now we are just watching it. He doesn't want to do surgery just yet but is pretty sure it will need to be done. My cardiologist says it's just a matter of time before the heart failure comes back and I'll need a transplant. But I'm taking it one day at a time. I'm enjoying my life. I'm in college to get my degree in early childhood education. I love kids and want to work with them. I'm trying to get disability because as much as I'd love to work I know I can only do it part time. I love meeting new CHD families and go to visit children in the hospital whenever I go for my appointments. I also love meeting them outside of the hospital too. I've been told I give them hope and I am proud of that. They help me feel not alone. I'm enjoying being an aunty and being in school. I love my life and am thankful for the doctors who gave me a chance to live it.

We're Not There Yet.

A week in Salt Lake City!? What was I thinking?

In all honesty, it wasn't horrible. We (my mom and I) came down on the 4th the day before my cardiology appointment.  Which was great because that night was a fundraiser for my heart brother Cooper! It was great to go a see him again and show my support.

 

-Cooper and I in August- 

September 5th was my appointment. I went and got an echo and saw my cardiologist. It went really well besides having to lay in an uncomfortable position for almost the whole time. But we got some great news. My cardiologist  told me I have the best ventricle function post fontan out of all of the patients he see's in his clinic! Yay go me! I don't have to go back for another eight, yes you read that right EIGHT months!!! It took me so long (3 years!) to get to finally being able to go every 6 months and now its eight!

After that we got a few days to relax. A vacation for sorts. My friend, a heart momma, did my nails!

 

-Beautiful thanks Ali!-

I actually spent a lot of time with her and her awesome son this trip so it was great.

 -Her awesome heart hero Tanner- 

I of course had to go up to Primary Children's and see my amazing heart brother and sister who are there waiting for new hearts. Matthew and Kylie. It was great fun, Matthew and I had a huge battle with agent P. He beheaded me, so of course he won!

-Matthew and I-

Kylie was such a cutie as always. Playing doctor and smelling books. She even let me sniff her book also! She was taken to the CICU recently and needs many prayers. 

-Kylie and I-

I even went to my very first heart walk! It was great fun! My mom even got some amazing heart mom shirts!

-First Generation (as I call her) heart mom and damn proud!-

I do got to say probably one of my favorite parts of the trip was last night. I went to dinner with  4 heart moms and there kids. Kaylyn and her beautiful 8 week old Bailey and Bailey's sister Mckenzie, Jessica and her adorable 6 month old Clara, Ali and Tanner, and Hollie and her dear daughter Elaina. It was so fun, full of food, fun, laughs and a lot of support, love, and understanding. 

I really love my heart family, even though there is a lot of heart ache, there is also a bunch of love. Well today was the big appointment. The one where I find out if I need surgery.  We started out the day shopping and got ourselves a little confused and showed up to the office about 10 minutes late. They took us back really fast, did the vitals and the pacer interrogation started.

I asked him to look and see if there was any recorded events from Friday night. The night I had 20 minute episode of severe pressure/pain in my chest and jaw. Something that has been happening more and more recently. Nope nothing. It showed a 30 second arrhythmia around 6:30 pm but nothing at 10pm the time of the episode. 

And that's when I knew the appointment wasn't going to go very well. The guy took about an hour to interrogate the pacemaker. He did it said were done, unhooked me and walked out of the room. But then came back and said he needed more. He then unhooked me again and a few minutes late 'oh wait I forgot to ___' 

ARE YOU SERIOUS!?

But finally he got it all. And that's when the doctor finally came in. He told me they had to change the pacemaker settings, AGAIN! Seriously?! They've changed it at every single visit since last September! What the heck is going on? The lead that they thought wasn't sensing seems to be sensing a bit more. There was 19 recordings on the pacemaker. At the moment he says since my arrhythmia's dont last to long, he doesn't want to do anything about them. He doesn't want to add any drugs and risk putting to much stress on my liver and kidneys. And since my heart anatomy is so weird an ablation is hard to do, so he doesn't want to try when they aren't lasting long. As of right now, he doesn't want to crack my chest to replace the lead. Not yet, but it will probably end up needing to be done eventually. When? Not sure. But we just aren't there yet. 

I talked to him about my severe chest pain. I told him how when I was in the ER they gave me drugs to stop my heart, and how the chest pain I've been having feels exactly like that. It's a terrible pain. So much pressure in my chest and just horrible horrible pain in my jaw. It's unbelievable. He said he doesn't think its heart related, and I'm not old enough to have angina. He thinks it might be an esophagus problem. WHAT!? How can severe chest pain like that be an esophagus problem? 

As we all know I have really bad trust issues with doctors. I'm trying to trust him on this but it's just really hard. He said he will talk to my cardiologist and see what he wants. So its up to Dr Green whether to order more heart tests or get me a prescription for the esophagus problem. I'm really trying to trust them. I know they will do what they think is best for me. And I will try it, and see how it goes. I just have issues. I want to trust them fully. I don't want to have any doubt it my mind. But my doctors before ruined that for me. 

I'm learning to trust again. I'm just not fully there yet.

It's Not Just Kids

I guess I just don't fit in. I mean I fit in to a point but then I just...don't. 

Maybe because I'm an adult. Parents see me and are like

 'oh she was born with a CHD and made it, she's done, she's beat this.' 

Like now that I'm an adult I'm done with this. It's only children fighting CHD after all.

Can I just call a bullshit? I'm tired of parents acting all high and mighty like its only their child dealing with this crap. Well guess what, its not!

Let me say, yes I know right now some kids are going through hell. I'm not trying to belittle their journey, just like I wish some parents wouldn't belittle mine.  I was once like your child. I had my first surgery at 2 days old. I've been in an out of heart failure, I almost died 3 times during my fontan. I've had seizures and I've been in a 2 week coma. I've been through hell too. My last surgery was when I was 19 because I was in severe heart failure and could die any moment. 19 - not a child. 

My cardiologist told my this journey will end in a heart transplant. Not that that's really an end or a cure, its just the beginning of another journey. 

I just felt the need to get that out. I at times feel I need to just leave the CHD world. I was happier when I wasn't in it. I've made some friends, but they usually leave me for another CHD parent because they "understand better." Or they leave me because I "bitch and moan" to much. Because they are doing good and don't want to know what not doing good looks like.

I get it, I'm sorry I speak the truth. I should try and make everything seem like sunshine and daisies.
And I know I'll probably offend someone with this post. Guess what, I DON'T CARE.

The hurt.

So I  finally got my groove back. I'm in the mood to write. I'm not sure what exactly this post will be about. I guess whatever comes to my mind. 

So those who follow me on Facebook, and if you don't and want to go here. Well anyways if you follow me you know I am now the proud (ha) temporary owner of a 30 day event monitor.

This thing is so freaking itchy. It doesn't help that I'm allergic to the damn stickies. 

What really  bugs me is how much it recorded the first day. I mean yes, it was good that it was catching my arrhythmia's but what annoyed me, was I wasn't feeling any of them! I have a lot of arrhythmia's and I thought I felt them all. To find out I don't and that I have a lot more then I ever thought, its creepy! It's disheartening.

And I swear its trying to give me a heart attack. It use to make a little beep to let me know it was recording. But when the company made me take out the battery (and we lost 7 recordings.. don't get me started on how pissed off that makes me) it stopped doing that. So now I have no idea when its recording, because it records what I don't feel. Yet doesn't record what I do feel and I have to press the stupid little button. But anyways, I don't know its recording so I move and it makes freaking high pitched noise that sounds like dial up internet. Which is just lovely when it happens in public. 

So I have this monitor so my doctors can finally see what exactly is going on, because the stupid pacemaker doesn't want to do its job! Good thing I'm not paying the bastard. Anyways maybe they will finally listen to me when I tell them I go tachy (tachycardia - fast heart beat) when I brush my teeth,  or do the dishes or just walk a little to fast. Which isn't normal. Maybe they will finally do something about it. What sucks though is if they do have to replace the pacemaker lead they will most likely have to crack my chest again. They told me they usually go in through a vein in the neck which takes it to the heart. Well with how effed up my heart is and how they rerouted it during surgery, the vein would take it to my lungs NOT my heart. And well we just don't want to pace my lungs.

With all this going on I've just been really angry. My pacemaker is only 3 years old!! It was suppose to last longer then this dammit! And part of me thinks that when I go back on September 5th they will tell me I do need surgery, just not the surgery we expected. To be honest I have a feeling they will say its time for transplant. And well, if I'm going to be brutally honest, I'd much rather transplant. I've had nothing but issues with my heart and pacemaker since surgery 3 years ago. I'm so done with this. I want my new perfectly whole heart. I just want to feel better! I want to be able to run, I want to chase my nephew. I'm ready to start that next journey. And yes I know its not all sunshine and roses. I know its a long hard process. I know there is a lot of pills and biopsies and rejection. I get it, but the journey I'm on right now isn't easy either.

And you know what I'm so tired of going to Salt Lake City so much. I'd just love three whole months where I don't go! I went from July 31st- August 3, I have go back down on August 27th and then back again on September 5. Please tell me that's the last time for this year!  

Though this last trip was fun. We did a CHD play group in the park. 

I met Jacob, Tanner, Jaret, Cooper, Elaina, Shiloh, Matthew and Kenzen. 

And their families of course. Goodness I love these kids. 

I also went to Primary Children's Medical Center and met 3 kids waiting for new hearts.

Kaidence got a flu when she was a baby that attacked her heart, Viral Cardiomyopathy and had a heart transplant. She developed post transplant coronary artery disease and is now waiting for another new heart.

 

Matthew was born with HRHS and had a heart transplant. He also developed post transplant coronary artery disease and is waiting for another new heart. 

Kylie was born with HLHS and had all three surgeries but developed heart failure and is waiting for a new heart. Or as she calls it a 'Lub-a-dub'

Those kids are amazing and one of the reasons I think everyone should be an organ donor. 

So anyways since I've been home nothing much new has happened. Except this damn monitor recording. The more recordings we can get the better. But honestly this thing is a pain in my ass. And let me just tell you there are a lot of rude people who like to stare. Its summer so of course I wear take tops and what not and its visible. I understand people looking, but what gets me are the ones who look, look away, then look back many times. If your that curious ask me about it dammit! I haven't talked to too many people because either they are just annoying or I don't want to bring them down with my angry bad mood.

I didn't even call or text my best friend about my heart monitor. I didn't want to worry her until I knew what was going on. But she's smart and she reads Facebook, so she figured out things where wrong. I woke up a few days ago to a text message asking if I was going to be okay. I said I'd be fine. She then said do you promise? I cant live without my best friend. Something along those lines. We may go months without seeing each other, or even talking. But when we do get together again, its like no time has passed at all. That's how best friends are. I hate how much this hurts her too. 

CHD doesn't just effect the person and their family. It effects their friends to. Before my last surgery she called me crying begging me not to die. And I promised her I wouldn't. 

This sucks, I know I'm hurting people. Yes I know I have no control over this and I know I'm not doing this on purpose. But I hate how much this hurts people. How scared they get. Me, I'm not scared. Not this time. been there done this. I'm not worried, I just want to feel better. 

Is that really to much to ask?