Just Sad Today...

I've been a horrible blogger! Perhaps I need a place to vent again. It just seems like the only news we're getting (or I am getting) is negative and I can't see sharing negativeness with the rest of you.

I will. I (and the family) need some more prayers.

My heart procedure was an 11 hour thing, I was awake for 8 of it. I thought childbirth was bad, then my boob job was the worst pain ever. I am telling you- that procedure was the most painful thing I have ever been through. After the 8th hour when it was "decision time" I just begged to be knocked out. I made it awake much longer than I thought I would. The team was amazing at keeping my mind occupied or rubbing a hand or foot. We got rid of the nerve going to the sinus node of the heart and they also ablated some areas near the atrial node inside the heart.

We were so hopeful it would work, but so far it's not done much more than keep my heart rate below 170. Which, is an improvement b/c it would get to 216. The last 2 weeks has probably been the worst. We've changed my heart meds about 5 times (the pharamacy loves me. haha!). My blood pressure dropped so low last weekend that I couldn't get out of bed w/o blacking out. It was scary. I go in for another holter monitor on Wednesday. I am praying we can find something that works.

Last June (2009) I had a CT scan for my circulation- my toes like to turn blue. Weird things! Something in my R femur showed up. So, we did an xray. The radiologist called and wanted an MRI immediately. It was scheduled and I didn't go b/c, honestly, I just didn't want to. I figured it was no biggie and we'd do it later- let's fix the heart first. So, when I went back in to see my internist she kinda fussed at me. In Nov I did the MRI and we found 3 lytic lesions (The orthopedic doc says they are holes) in the femur. If I had a copy of the MRI I would post it. I need to get it.

So, today I went to the Nephrologist (Kidney dr) b/c the ct from Nov (we did a CT and an MRI in Nov) showed a "milk of calcium" deposit and several kidney stones (this is my 2nd time to get several stones in each kidney this year).

Today is what has me sad. The kidney guy said that the kidneys could be pulling the Ca out of my bones and depositing into my kidneys, causing holes in my bones- the right femur is the only one we've MRI'd. It's called "Brown Tumors". We discussed things with the parathyroid gland as well. I googled it. Should not have.

My list of Dr's is growing to be as long as Logen's at this point. The Dr today agreed in saying "you have multiple systems failing you, some of it has to be related". I am so glad that somebody agreed with me on that. He actually said it before I asked about it.

I am just not sure how to handle all of this. I am trying to stay positive. Now, it's just kind of like "really?". I love it when the doc says "this is rare" (as the bone, heart, and now kidney guys all tell me). I have to laugh and say "thats what the ___ doc said to. I must be rare!" haha!

So, anyway... as this crazyness all unravels we just need some prayers. Thanks :) It's putting strain on us all. I will try to be a more faithful blogger!

Heart Procedure Recovery

I am recovering from a heart procedure I had last week. I will update soon.

Need To Vent!

I spent 3 hours at the doc for myself today. I am so used to doing this for Logen, that I am ok with it. I have accepted that. I have accepted that there's not always good news when we pack up and head to his doctor's appts. It's just how it is. However, when it comes to me- I've expected to go and leave without "bad" or "crumby" news. Today, I went into for my hospital stay follow up. We went through my labs, etc. I kid you not, that stack was forever thick. My labs were so messed up. Things were too high, and too low. So, the doc ordered all of those again today. The one I am most concerned with is the ANA-titer. Mine is too high. Everything else is too low. I guess I just sat there with that, could anything else possibly be wrong? There are several things this could mean. I'm not going there, we will just hope for the best. It has to do with your antibodies though. I got a referral to a Neurologist for migraines (that have been around since before the heart stuff), but I wonder if all of this stuff isn't related in some odd way. like all of Logen's weird stuff??? Doesn't it all have to add up somewhere?!?!
Anyway, that's my deal. I want to be fixed. I'm done with the bad. Oh, Saturday's call... yea, I'm just sick of talking about it. Not what I wanted to hear. A heart procedure is in my future. I will elaborate in the next week.
Our family is in the need of more prayers :) Thanks!

I honestly haven't kept up here b/c I feel so much going on is negative. And, sometimes you just want to share positive news. I was waiting for that to roll around.

So, I am anxiously awaiting a conference call from a heart specialist (Electrophysiologist) in Oklahoma City. She is calling today to speak with my family about what looks like our 1 option for me. She (the doc herself) called me on Wednesday and told me that the only option she saw was experimental and risky. Her words, not mine. She said she put me in "tentatively" for heart surgery on Oct 6 (just happens to be 3 days after my 25th birthday). She requested todays call to be a family thing, where atleast one other person be listening and participating in the conversation. I chose my Mom b/c she is an RN and worked 10+ years at the Heart Hospital. The doc also told us to record the call so we could refer to it again while making the decision.

To be quite honest, I am scared out of my mind. Not only do I feel like I have been run over on most days I also have some weird, eerie feeling of death. My mom sat down and sumed up my tests and things for a family member in a recent email. I thought I would post that for those interested. Please continue to keep Logen & I, as well as our family in your prayers.

* We have not heard anything on Logen's test results. I will post them as soon as I know something! *

EMAIL:
"As you know Jess has been hospitalized 3 times since Nov 08 for "a racing heart" called SVT, Hypotensive crisis (low bl pressure) The cardiac catheterization showed no blockages in the arteries: a right & left were done. The right side checks for pressures inside the heart as well as the amount of oxygen. The heart itself is in good shape as far as healthy strong muscle. The electical conduction appears to be the issue although they could not see the right ventricle.

So far she has gone through:
ECG-sensors that detect electrical activity of the heart that measures timing & duration of each electrical phase in your heartbeat (this is only as good as the minute it is being done)

Holter monitor-worn for 48 hrs to record activity during a routine day, on more than one occasion.

Echocardiogram-uses sound waves to produce images of heart size, structure & motion.

CT & MRI-collects images of the heart & chest. Stress Test-failed this test within the first 5 min, so was unable to complete r/t heart rate above 200 while on the treadmill.

Electrophysiologic testing & mapping-catheters tipped with electrodes threaded through blood vessels to a variety of spots w/in the heart. The electrodes map the spread of electrical impulses through the heart. They stimulate the heart to beat at rates that trigger an arrhythmia hoping to find what may be causing the problem.

Pulmonary Function Test (PFT)-meaures how well the lungs are working, expanding & contracting & of exchanging oxygen & carbon dioxide efficiently between the air (or other gases) within the lungs & the blood. It records changes in lung size as air is inhaled & exhaled & the time it takes for the patient to complete the task.

So, as you can see she has endured a lot in the past 10 months, with very little explanation as to why she is short of breath after walking a short distance, poor circulation (blue toe syndrome) & a heart rate that cause fatigue/weakness with minimal tasks, dizziness & several faiting spells.

The cardio & pulmonologists are puzzled with what appears to be a healthy 24 yo who goes to school full time & is raising 2 small children. She is an over acheiver & it is extremely difficult to hold her back from doing all she does in a day."

NEW doctor, NEW plan!

Ok, so... I'm on night 4 in the hospital and i've lost my sense of humor. I'll give a run-down of whats up.

I passed out walking down the hall Sunday. I was home alone with both boys, Adam had run to the store. When he walked back in, him pushing on the door must've brought me "too". The boys were laying on top of me. He put me on the bed and got me dressed and on we went to the ER.

I went straight back b/c of my heart stuff. They checked cardiac enzymes, etc. I had had a migraine all day I couldn't kick. They decided to do a head CT. They started an IV and gave me morphine for chest/head pain. 5 hours later they said it was to risky to let me leave, they admitted me.

Monday, they watched me, did EKGs, and ran labs. Tuesday we did an echo, EKG's, a pulmonary function test and more labs. Today we've done EKG's, labs and called in a new doc!

My EP actually said yesterday that he thought I passed out b/c I have a UTI. Seriously, we were all ticked. We called in a new Cardio today who I really liked. First thing tomorrow I will get up and do a stress scho. My heart got up to 150 today (and I am sedentary in here, let me tell you). So, he wants to see what it does with activity. He said he is going to be in there to watch me. My BP is staying low (too low actually) at 95/59. I'm already on the highest doses they make of 2 heart meds, so we are kinda at the end of the rope with medication therapy.
Our new plan is extensive and several tests may be repeated. I have been under so much radiation this year, I think my insides are fried. I've had my blood taken so many times, I honestly cannot even feel them stick me.

Please say a prayer for our family. The boys are really having a hard time with this. Parker slept on the couch last night b/c he couldn't sleep, not even in Mom's bed! Last night when he left the hospital he held my hand and said "go with me, mommy". Talk about breaking my heart. Mr Logen adapts to change like no other. He is very happy to see me when he comes to visit and has the biggest smile ever. It's the bestest!

Prayers Tomorrow, Please!

I suppose this one is to be more of a vent. Or a prayer request. I'm just not sure.

We changed my heart meds last week b/c one of the medications. I'm on med 3 and nothing has brought my levels under 100 for an extended period of time or gotten rid of all the lovely things (like allowing me to walk without becoming winded!) like it should. My feet and hands have started tingling and feeling numb. My toes also started turning a lovely shade or purply-blue. The blue thing has happened on several other occasions and when I asked another doc about it, she'd said it was fine. FINE??! Blue toes aren't fine....

So, when I called my EP the nurse said, "come on in now". I went in, the doc looked at my toes- saw that they are blue and ordered an ABI to be done then. The 'people' came in and did my ABI (which hurt in one leg... as she warned. You wouldn't think just taking a pressure would be painful). I'm cutting out details here as I have a homework assignment due in a few hours. I was sent to check out and be on my way- they were going to call with the results.

I kinda freaked when the nurse caught up with me and said "I'm glad I caught you, we are trying to get your insurance to pre-auth a MRI and MRA now, can you just sit in the waiting room?" Um... ok. Flip out. So, I sat there and text my mom and was to the point on little water droplets in my eyes. The nurse came back out and just had me come back there b/c one of the nurses had the insurance on the phone and one had central scheduling on the line. My ABI ended up being .94 and 1.00. I was told that anything below 1 is abnormal. Anything below .95 is "significant narrowing of one or more veins in one or both legs." My Doc spoke with another Doc while I was there, we didn't get the test scheduled for that day b/c it's a 3 to 4 hour deal. And, the machine wasn't open. So, I go in at 2pm tomorrow.

Conclusion: the blood is not circulating to (and through) my legs/feet like it should be. We are going to figure out why. So, Dr B says. This can be related to my heart thing or not. We don't know.

I do NOT fit in the "approriate categories for any of this stuff. I am young, never smoked, I don't do drugs, or drink (well... not like they are talking!), my BMI is perfect... it just doesn't add up. And, my Doc says that. "This happens to 80 year olds, not people like you". Yes... he said that!

Anyway... I get to be in a tiny space for a while tomorrow and I'm just a little concerned about everything going on. So, please keep our family in your prayers. I had a test today and yesterday. And, still working on all of Logen's stuff. And, it's just really overwhelming!!!!

I'm Home!

I was discharged Thursday afternoon. Things look ok, I go back in 1 week for labs- my potassium was still low on days 2 & 3 of labs (and they'd give me a supplement everyday). So, I left for meds to take for heart health 4x a day. I'm 24! My d/c nurse said it nicely and I have to agree- nobody my age should have to take this many medications for her heart. A little self pity, I guess.

I'm home, picking right back up and going about our business. I haven't felt really good. The meds totally wear me out. And, I've been seeing doubles! (its the meds!) They said it would take a while for me to adjust to them. Oh, boy! haha The boys are happy Momma is home, but they are having some Nana withdrawls!!!!

I'm working on getting my private blog back up.... send me an email if you're interested, I will need your addy to add you.

Hospital Update

Not sure whats up with the ad in the middle of my blog?!

Thanks to one of my great friends, my stay hasn't been to bad! Julie has kept me fairly entertained.

Yesterday was a bit rocky. The new beta blocker knocked me out. I couldn't keep my eyes open. My blood pressure dropped very low last night and was still really low this morning. I got up and moved around, which brought my heart rate up to 113 and my pressure up to high (I also got dizzy and felt like I was going to float away... I'd rather have been on a cruise). My APN came in and said that's all part of inappropriate sinus tachycardia. The Doc came in about 2 hours ago and said on the monitor things are looking good- even with the fluctuations- the meds are doing what we need them to do.

I did get in "trouble" for just sitting a reading. I was told to get up and walk around the unit. I told him I never get to just sit :P As boring as this all is, it's kind of nice to not have to wash laundry or dishes! I miss my kids like crazy and am ready to go back to it all though.

I did not sleep last night. I finally went to sleep around 1am and at 4:30 I was woken up for an EKG and labs. A lady rubbing your arm with alcohol to wake you up doesn't make you happy, let me tell you! At 5:30 (I had just gone back to sleep) they came in to do vitals.... And, at 6:30 my step dad brought me IHOP.

Fairly uneventful here. My kids have been by to visit, but aren't able to stay long b/c they dont do confined spaces for long periods of time.

Zombie Hangin' In Space

It's about 12:30 Thursday- a little over 12 hours since my 1st dose of my new med. I feel really awful! Like a living, walking zombie. I'm so exhausted. I feel like I haven't slept in days. And, I have a just "hanging out in space" attitude. The doc said this is to be expected until my body adjusts. I can't wait. This stinks.

Heart Stuff

I started out my day by going to see the Electrophysiologist. Somebody had finally figured out what is going on with my heart!

I started a new medication for heart failure today, a cardiac glycoside. He started me on the highest dose. My Pharmacist warned me of nausea. He also said if I start to see "Halos" or lights around things (or any other vision change), my dose may be to high and I may need to go up a little slower. Doc also said to drink plenty of electrolytes! Blood tests can show if you have the appropriate levels in your system. I thought that was pretty cool.

He will be admitting me to the hospital for 3 days to start a new beta-blocker (BB) b/c the current BB is not working as it should. My heart rate is still averaging 120, but my blood pressure is around 100/60 (normal is 120/80). So, while my heart rate isn't going down, my blood pressure is. There are too many risks involved with starting the new med, so he won't let me start it at home. It must be done while monitored 24/7. I am waiting to hear back from the nurse on when.

This is a life long condition and surgery isn't an option (at this point, but who knows- maybe somebody will invent it!)- just symptomatic treatment with medications. It will be a combination of a few meds to treat.

Obviously, the biggest risk associated with this is heart failure. But, my doctor seemed confident that with the proper medications we should beable to avoid this. :)

The med I started today may make me tired as it slows things in my body down. My poor heart is so used to going so fast it's not going to know what to do when it gets to rest!

I'm trying REALLY hard not to let this get me down. Please say a prayer for me (and my family) on this. It's a scary thing, but I'm keeping my faith. I think I am going to start "private blogging" again (there's marital probs, Logen's stuff, this, etc!). If any of you are interested in reading, let me know.

I'M DONE! I'M DONE!

I took my last final today! I cannot tell you the HUGE feeling of relief today brought. (After my exam, of course!)

My French grade has been posted.... I got an A!!! My Theatre grade was also posted, also an A!

I feel accomplished. I worked my booty off!!!!

Side Note: I go in Thursday for a Holter Monitor & I see the Cardiologist Tuesday. The heart med I started has done ZIP! I've been having some funky chest pain that will go into my shoulder, creep to my elbow and then make my fingers tingle. Apparently the Heart Center doesn't read your stress echo's until the day of your appt? The nurse from my Internal Med Dr called & said they were going to see if they could get it read before next week. We shall see.

Keep On Prayin' For My Logen!