No more cardiologist visits....

This post is going to have a lot in it so I hope it doesn't get confusing...

Yesterday we headed up to the hospital for my cardiologist appointment. We checked in and waited. Then we waited some more. Then the nurse called us back!! But she only did my vitals...they still didn't have a room for me. My parents and I play a fun game called "predict my vitals"! We take bets on what my blood pressure and heart rate is. Unfortunately, we didn't play yesterday...Finally we got into my room over an hour after my appointment was scheduled. Next, I got to change into those adorable hospital gowns. Let me tell you, if you have never gotten to wear one, you are missing out the luckiest person alive. We knew what was coming next. The nurse came in to do an EKG.

Soon after that, the cardiologist came in. We talked for so long. He said that since I can't handle beta blockers or any other medicines he has given me, that there is nothing he can do. He started a sermon about how we just have to deal with things and get over it. I always complain about how hard and fast I can feel my heart beating 24/7. Then when they put me on medicine I complain because my blood pressure is too low. So he said that if I can't deal with that, that we just need to figure out what to do ourselves and that we really don't need to see him anymore. Has HE ever had this?! I can't just ignore my extremely hard and fast beating heart or ignore almost passing out and not being able to get up because of my low blood pressure. He also insists on me getting off my sleeping medicine because he believes that is what's causing my heart problems. He decided he wanted an ECHO (ultrasound of the heart) done right then. So we went across the hallway to the ECHO place. He looked at the results and they were fine. He is a very nice doctor. I understand why he can't do anything, but it still makes me mad. Every doctor does this to me. "I'm sorry, we don't know why this is happening and we can't do anything about it. Good luck!" I'm tired of hearing that!!! I guess it's good that I don't have to see him anymore. One less doctor to deal with.

So I'm not taking the beta blockers or any heart medicine. I'm also slowly getting off my sleep medicine. I NEED that sleep medicine. It's the only thing that has helped and trust me, we have tried everything. Today I started back on the long list of liquids and pills. We are going to be talking to my pain management team since they are the ones who put me on the sleep medicine. They told that they know how horrible it is when I don't take the sleep medicine so they are trying to think of something else to do. That's where we are right now. It's frustrating having so many doctors tell you so many different things and make you decide what is right. Usually that's WHY you go to a doctor. After my appointment I broke down walking down the hall to the elevators. I don't know why, but it just makes me upset when I have another doctor tell me there's nothing he can do and I just have to deal with it.

Here are 2 songs that I really love. They have great messages.

The Power of Your Name by Lincoln Brewster

"Surely children weren't made for the streets

And fathers were not made to leave

Surely this isn't how it should be

Let Your Kingdom come

Surely nations were not made for war

Or the broken meant to be ignored

Surely this just can't be what You saw

Let Your Kingdom come

Here in my heart

I will live

To carry Your compassion

To love a world that's broken

To be Your hands and feet

I will give

With the life that I've been given

And go beyond religion

To see the world be changed

By the power of Your name

Surely life wasn't made to regret

And the lost were not made to forget

Surely faith without action is dead

Let Your Kingdom come

Lord break this heart

Your name

Is a shelter for the hurting

Jesus Your name

Is a refuge for the weak

Only Your name

Can redeem the undeserving

Jesus Your name

Holds everything I need"

Until The Whole World Hears by Casting Crowns

Lord, I want to feel with Your heart
See the world through Your eyes
I want to be Your hands and feet
I want to live a life that leads


Ready yourselves, ready yourselves
Let us shine the light of Jesus in the darkest night
Ready yourselves, ready yourselves
May the powers of darkness tremble as our praises rise


Until the whole world hears, Lord, we are calling out
Lifting up Your name for all to hear the sound
Like voices in the wilderness we’re crying out
And as the day draws near, we’ll sing until the whole world hears


Lord, let Your sleeping giant rise
Catch the demons by surprise
Holy nations sanctify
Let this be our battle cry


Ready yourselves, ready yourselves
Let us shine the light of Jesus in the darkest night
Ready yourselves, ready yourselves
May the powers of darkness tremble as our praises rise


Woah, woah, sing until the whole world hears
Woah, woah, sing until the whole world hears

I want to be Your hands and feet
I want to live a life that leads
To see You set the captive free
Until the whole world hears
And I pray the day will see
More of You and less of me
Lord, I want my life to be
The song You sing

One problem after another

I know I have mentioned this before, but it's still a big problem. Because of my really high heart rate, I was put on a beta blocker. A couple weeks after starting it, I was taken off of it. I was so dizzy and out of it and a completely different person. My cardiologist said that I can not be put on beta blockers again because I can't handle them. So I was put on a medicine that comes from some plant I think. It's a very old medicine. He assured us that I would not react to it. He obviously doesn't really know me, because I reacted to it. That is what brought me to the hospital a week or so ago. My heart was jumping around all over the place. In the hospital, my cardiologist and the on call cardiologist kept talking back and forth, along with my pain management team. The medicine that the pain management team put me on for sleep, can cause heart problems. But when I first started having heart problems in November, I stopped the sleep medicine for a couple weeks to see if that was the problem. I still had the heart problems so I started taking the sleep medicine again because it is the only thing that helps me sleep.

So while I was in the hospital, there was a lot of communication with so many groups of people causing confusion. The on call cardiologist wants me to stop my sleep medicine. The pain team doesn't want me to stop it because they know that I have to have it to sleep. The on call doctor started me on another beta blocker. Remember how I said I wasn't allowed to be on beta blockers anymore? Well this was our only choice so I started another one. Again, they assured us that I wouldn't react. They also told me to get off my sleep medicine...

Fast forward to Thursday. I could tell that my blood pressure was so low. We ignored it. Friday, we talked to my doctor in Nevada. He has been uncomfortable having me on a beta blocker because he knows my low blood pressure problem. He told us we need to get a blood pressure and heart monitor. So yesterday morning, when I took my blood pressure, we knew it wasn't good. When my blood pressure is 90/68 or so, the nurses and doctors comment on it and freak out a little since my heart rate is so high and my blood pressure is so low. Yesterday morning my blood pressure was 78/53. No wonder I felt worse than normal. Through out the day I kept checking it and it would go lower than that. I felt so bad yesterday to the point of crying all day long. Not good at all. I was really scared so we called the on call cardiologist again and he said to stop the beta blocker.

On Wednesday I am actually seeing my cardiologist so they said to just see what he would say. So we have no idea what the plan will be now. I didn't get to go to church today which makes me mad. Church is the one thing that I get to go to every week. My blood pressure is higher than it was yesterday, but still low, and my pulse is higher than yesterday. It should be an interesting week...

"I'll never forget the trouble, the utter lostness,

the taste of ashes, the poison I've swallowed.

I remember it all—oh, how well I remember—

the feeling of hitting the bottom.

But there's one other thing I remember,

and remembering, I keep a grip on hope:

22-24God's loyal love couldn't have run out,

his merciful love couldn't have dried up.

They're created new every morning.

How great your faithfulness!

I'm sticking with God (I say it over and over).

He's all I've got left.

God proves to be good to the man who passionately waits,

to the woman who diligently seeks.

It's a good thing to quietly hope,

quietly hope for help from God.

It's a good thing when you're young

to stick it out through the hard times.

When life is heavy and hard to take,

go off by yourself. Enter the silence.

Bow in prayer. Don't ask questions:

Wait for hope to appear.

Don't run from trouble. Take it full-face.

The "worst" is never the worst.

Why? Because the Master won't ever

walk out and fail to return.

If he works severely, he also works tenderly.

His stockpiles of loyal love are immense.

He takes no pleasure in making life hard,

in throwing roadblocks in the way" Lamentations 3:19-33 (the message)

The Museum - My Help Comes From The Lord

"When sorrows come and hope seems gone

You're the rock I rest upon

When waters rise and I can't breathe

You're the love that rescues me

Out of the darkness I lift up my eyes

Unto the hills I feel my faith rise

Maker of heaven, giver of life

You are my strength my song in the night My refuge my shelter Now and forevermore My help comes from the Lord

When I'm broken scarred by sin

Death gives way to life again

When I suffer when I doubt

In you I'm free in you I'm found

Maker of heaven, giver of life

You are my strength

You're my refuge

Now and forevermore"

Heart update and father/daughter luau

We have talked to so many doctors the past couple days. I am having heart arrhythmia's which is not good. They told us that the problems I am having could be the rare side effects from medicines. 99.9% of people can tolerate every medicine. I am the 1% who has every side effect listed plus the rare serious ones. How did I get so lucky? Because of this, doctors are scared to put me on any pharmaceutical meds. I did start another beta blocker when I got out of the hospital Wednesday. The cardiologist and pain doctor talked and decided that I need to slowly wean off of my sleep medicine. The pain doctor really doesn't want me to get off of the sleep medicine because they know how bad it is if I don't take it. We'll see what happens.

My cardiologist has been talking to the on call cardiologist who worked with me in the hospital. They said that until we get the palpitations stopped, it is going to be painful. There is no way around that.

The main problem that we are trying to figure out is why is my heart not working properly. The pain doctor says it's from Lyme but the cardiologist won't say that for sure. They think there might be something else wrong. He has to rule out everything before he says it's Lyme. My doctor in Nevada says they need to figure out soon because this has been stretched out since October.

That is where we are right now. I'm not sure what is next. I've been really out of it from the nausea and meds. I'm so weak still and haven't been able to eat much.

Last night at church it was the father/daughter luau. I actually went! My mom did my hair and makeup since I'm ex hasted and weak. They had dinner which didn't go so well. I ate green beans and that is all. All the food made me more nauseous. But it was fun! We played games and just hung out.

I have been sleeping a lot lately. Monday and Tuesday night I was in the hospital which means I didn't sleep much. Hopefully I will get stronger soon and be able to eat again.

Here are some pictures from the luau!

Quick update about the beta blocker and side effects!

Yesterday my family and I drove to Dallas for the day! We had dinner at our favorite restaurant, Pappadeaux! And of course my mom and I had to go to a few shops. Our excuse? Well dad, here is the reason. I am starting on lots of new medicines. So mom and I need new purses and bags to carry all my medicines and supplies!! Best excuse ever? I think so!

We left for Dallas around 1 yesterday afternoon! My cardiologist called when we were in the middle of no where so it was hard to hear him. My mom told him about all the side effects I'm having and he said that the medicine is causing that. Uhh DUH!! Thank you captain obvious! I'm so rude like that...it's the meds, except my family says I'm always like that...probably true!

He told me to stop taking the beta blocker! I'm so glad! He said that every beta blocker will cause those problems. So unless there is no other option, I won't be on beta blockers. He is starting me on a medicine that they give people with heart failure and just heart problems in general. I'm starting that tonight. We are praying that I can tolerate this medicine better.

It is so weird because I just stopped taking the beta blocker last night. Today my heart rate is back up to 130-140. It's amazing how fast it came back...I'm all shaky and jittery from it. Hopefully it will go back down soon!

We got home from Dallas around midnight last night. Now we are sitting at home watching the blizzard. We wore shorts and tee shirts yesterday and now we can't leave the house! It's crazy!!

I hope you are having a good weekend!

Beta Blockers

Quick update.

We talked to my Cardiologist today. He said that the problems with the muscles in my heart are caused by the tachycardia (fast heart beat). He is able to monitor my heart rate with the heart monitor that I'm wearing. My heart goes down to 70 beats per minute at night, but then during the day goes up to 140 even at resting. He is putting me on a beta blocker to see if that will help with the fast heart rate and muscles.

Please pray that I will be able to handle the beta blocker. Ever since I got sick I am so sensitive to everything. I can't even stay in our laundry room for more than 16 seconds because the smell of the soap makes me cough and I can't breathe. It's ridiculous.

He wants to keep monitoring my heart for a while to see if the beta blockers will help. So I get have to keep wearing the heart monitor...

Thanks for praying for this!

Well this is a bummer...I got new medical jewelry

There is a lot of information in this post. So towards the middle is the serious medical information. The first part is just pointless stuff!

Sunday night through Tuesday I had fever. I don't know why but I felt horrible. Thankfully I don't think I have fever anymore.

Yesterday we headed to the hospital for my Cardiologist appointment. We drove up saying this was the same building my Rhematologist was in. I went to him right before we found out I have Lyme. He diagnosed me with Fibromyalgia and put me on Cymbalta, Ambien CR, Lunesta, and some other strong medicines. I was 15 at the time and none of that is approved for anyone under 18. I started taking them anyway and I blacked out a few times from them. We called the emergency doctor and he told me to stop taking everything. That is when we threw all the medicines in the trash and knew this was not the right path to be on. I never went back to him.

So yesterday we valet parked and got in the elevators and ended up in the SAME place that my rhematologist was in. Thankfully my rhemetologist isn't there anymore...

It was weird being there again, especially since we never came back.

They took me to triage and took my vitals. It took at least 2 cuffs and 3 tries to find my blood pressure. The nurse asked if I always have trouble getting my blood pressure to read and I said yes. I also told her that my blood pressure is always 90/60. She was still determined to find out for herself. When it finally read it was pretty close to 90/60. It's kind of funny that I have to tell my nurses where my good veins are and what my blood pressure and heart rate are. I'm unique because usually if you have a high heart rate your blood pressure will be high too. Nope, not with me. My heart rate is always too high and my blood pressure is always super low. Nurses can't even count my heart rate because it's too fast. Thank goodness for machines that read it for you. At triage my heart rate was 132 bpm.

After all that she took me to my room and told me to change into the gown. Well that was a bummer because it was a little chilly. After I got my gown on, another nurse came in to do an EKG. I guess it's just standard procedure to do an EKG on everyone who comes in because I have had like 4 EKGs recently. My EKGs are always fine.

After that, the doctor finally came in! We went over my life story 900 times and he listened to my heart and all that fun stuff. His first question was, and I quote "so where did you get the Lyme from? Did you live or travel to the north?" I thought oh no! here we go again. Please don't make us have to be escorted out of the building by security. Just don't even go there. (just kidding we aren't that rude but it's come close a few times) He finally moved on and was okay.

-Medical Information-

We started talking and he told us a few years ago that another girl my age came to him with Lyme disease. Her heart was completely blocked from the Lyme so they immediately admitted her to the hospital and started her on antibiotics and steroids. I'm glad she got to the cardiologist fast so he was able to save her life. They caught her Lyme in stage 1 so they reversed the heart problems and she's fine!

From glancing at my echocardiogram, he saw that there is something wrong with the muscles in my heart. He is going to call us in a few days and update us on what he sees when he has a chance to look in detail on my test results.

He said I definitely have tachycardia. That just means that my heart is faster than normal. I think above 100 is diagnosed as tachycardia. Fast heart rate is normal for a Lyme patient but that doesn't mean we can just forget about it. The Lyme is definitely attacking my heart which can obviously cause serious problems.

The doctor said that we need to find out what is causing the fast heart and how the Lyme is attacking my heart. In the next couple of weeks he might put me on beta blockers. We first need to see what's going on with my heart structurally. So for now we are waiting on him to call and tell us what the plan is.

On the way to the hospital I told my mom that I was hoping I wouldn't have to wear a heart monitor for a couple days. Well lucky me, I get to wear one for a whole 30 days!!!

When the nurse told us I about ran away. But I was very polite and tried to contain myself. It's a really complicated thing and she taught us in 10 minutes.

There are four circular pads that go on my chest and stomach that have color coded wires. The wires connect to a monitor that is recording everything. There is also a huge cell phone that I have to keep with me at all times because the monitor sends the information through the cell phone to a computer. Someone is ALWAYS watching my heart from the computer and can contact me through the phone if there is a problem. I have to wear all this around my neck...pretty much like an adorable necklace. Try not to be jealous.

I have to charge the phone every few hours which is a little annoying because then I can't go anywhere because the phone is plugged in to the wall. The only thing on the phone is a screen that shows a beating heart and where the wires go. Several times today I have set off alarms because the wires fall off or something like that. Also, if I feel dizzy, light headed, faint, chest pains, or anything like that, I push a button on the monitor and then on the phone i type in what symptom I am having. So at random unknown times the monitor and phone send off alarms. If I have to submit a symptom, then that sets off alarms too. I'm not sure how this will work in public...

I think that is all we know right now. We were hoping for easy answers but we didn't get any. The doctor was very nice and helpful.

I hope you have a great weekend! I will update as soon as I know something. Thanks so much for the prayers!!

Echo and another appointment

On Monday I went to Children's hospital for the Echo. It was interesting! I got to see my heart on the screen the whole time. She monitored different parts of my heart with the ultrasound. She said that she thinks my heart is good structurally. We asked if I still need to go to the Cardiologist. She said yes because the Cardiologist will look at different things. And there is still something going on with my heart. The nurse said I should not be able to feel my heart pounding all the time and it needs to slow down. So the Cardiologist appointment is in the beginning of February at Mercy Hospital.

Yesterday and last night I had a horrible migraine. I had to take 2 migraine pills, and 2 different kind of pain medicines and it still wasn't better. I felt horrible. It's mostly gone today but it still hurts and I'm really worn out.

Today I'm going back to Children's Hospital for an appointment with my pain management team.

If doctors were money, I'd be a millionaire..quick update

I wish there was a contest of who had the most doctors..because I think I would be close to winning. My primary care doctor called and said that he wants me to see a Cardiologist for my rapid heart beat. They couldn't get me in until February though. That will be my 9th doctor right now! Goodness. Every doctor wants to send you to someone else, who sends you to someone else, and so on. At least I have doctors!

I'll try to update after my Pain Management appointment today. We have lots of things to talk about so I should have more answers (hopefully).
I hope you have a great day!