Tuesday, June 25, 2013

Wishing it were August...

"Jesus, I trust in You..."

        I am so ready for the ablation. Yes, you heard me right! My heart raced again this morning... for two and a half hours! It started about 4:30 in the morning. About 6am we headed toward the ER. Seriously right before we pulled into the parking lot of the building my heart slowed down.
So we turned around and went back home. It was sooo frustrating!  My heart rate has been in the 80's and 90's after that, so far today. That's still fast, but I'm not too worried about it. I'm sure it'll take a day, or after my second dose of my heart med, for it to calm down. It does make me feel shaky though... Don't like it!  Going up half a dose at night on the med, btw.  Hope it helps.
        Anyway, yes, the ablation scares me like crazy... but I don't want to have to deal with this anymore. I'm tired of rushing to the ER, being freaked out, feeling crappy, shaky, and anxious...and almost passing out, feeling dizzy and light headed.  I just want the operation done and over with. So I won't have to deal with this anymore.
         I'm in the midst of trying to schedule my ablation, clinic visit, and nerve test. It's been hectic...but I should have it all figured out by tomorrow. Hopefully.  It will probably end up being sometime next month. The sooner the better. However the cardiologist's PA emailed with me today and said, "I understand you wanting to get this done soon, but the doctors want to be sure you're 'in a good place' and have healed enough post transplant first."  Makes sense, but I still wish it was tomorrow. ;)
        I do hope it's as routine as they make it sound.  I've talked with a lady who got an ablation years ago and she remembers it being pretty simple... and hasn't had an episode since!!  That does make me feel better :)
        Oh I'm tired of "issues." I want it to be August so all my operations will just be over! Maybe then things will really go to normal...?
        Other than that, my breathing is doing fine. My energy is fine. My numbers are all fine. My lungs seem to be just fine! And that's a good thing. I am lucky. I know it.
         And I know I'm complaining. I'm sorry. I'm so blessed, I shouldn't complain. I'm just frustrated and stressed at this moment. Need to vent a little...before my husband gets home. Ha! ;)  I guess I just needed a few hours of being upset. I mean it's just scary in the midst of my heart racing.  I know I'll be ok...all the docs said I'll be ok. My loving husband constantly reassures me I'll be ok.  (He is so sweet... and I'm so blessed to have him.)   But still, in the moment, it ain't fun.  Ok. Done venting. I'm exhausted. ;)
        Lord, I do trust You. I just got to get through this next hurdle...
        Pray for me, please. Thank you.

Much love,
~Julie Jean

Tuesday, June 18, 2013

Here we go...

"On the road again..."

        Well, we're on our way back home from Dallas. In all, it was a good clinic visit. Nothing immediately wrong or that is going to hurt me.
        So I did see the cardiologist. And, well, I'm getting a heart ablation next month.  Yay (sarcasm). That means I'm going to get an operation on my heart to burn off the bad cylinder that's causing it to freak out so much.
        They said it's an overnight operation and it's low risk for me because I'm young. So that's good, but still scary.  There are risks... like accidentally burning something wrong or it being too near to the normal stuff, that they want to keep, that it damages those.  If something like that happens, I think she said they'd have to put in a pacemaker...? Ugh.
        I also may have to be intubated again. That's where they put a tube down your throat for the operation. So that will probably mean (I'm thinking) it will cause more damage to my vocal chords. Nobody told me that was a probability, but it's just my mind worrying. It was damaged last time I was intubated. Oh I hope I don't lose my ability to eat or talk!! <-- more overreacting. ;)
        And to make things worse I may have to be awake through some of the operation. You see, they have to trigger the heart to start racing to find exactly where the problem is to burn it off. And I guess sometimes if you're asleep it won't work. I told them, "The thought of being awake during that freaks me out." So they said they could try it first with me asleep the whole time. Hoping it works! Because I do NOT want to be awake when they stick a wire up my artery to trigger my heart to race!! Just the thought will probably trigger it!
        And after allll that I will still need to get the throat nerve test and operation too. Good grief.
         Sigh. Not too thrilled right now. I'm so stressed and really need prayers for courage and peace. I know God doesn't give us more than we can handle...but, wow, God, You give me a lot sometimes it feels like. I need a break. ;)  Maybe after all the operations are over all the scary stuff will finally be over...? I hope so.  I shouldn't complain. I've been blessed thus far.
        For now they have me on heart meds to hold me over until the operation. And the doctor did tell me, "No matter how scary it seems when your heart races, it's not going to kill you." Ha! That's a plus. I'll try to remember that.
        Anyway, thanks for letting me vent...not that you had a choice. Hehe ;)
        "Everything will all be ok in the end. If it's not ok, then it's not the end." :)

Much love,
~ Julie Jean

Monday, June 17, 2013

Heart and Throat

"Quit playing games with my heart, my heart..."

        ^ Ha! Got that song stuck in my head now. Well, we're back in Dallas for clinic.  And I've had a few more short episodes of rapid heart rate. I'm seeing the cardiologist tomorrow. So hopefully I'll have some answers or ideas to what's wrong AND have a plan to fix it. Sigh. So nervous.
        When it comes to my heart... I'm so scared. When my heart is racing, I feel so awful. Being scared it could start up again any time, anywhere, is frustrating. The heart just seems so fragile. I don't want anything wrong with it anymore... I want it fixed!
(Throat specialist office)
        Also, I saw the throat specialist today. Next month I have scheduled a nerve test on my vocal chords. Yay (sarcasim). Wait til you hear this.  The nerve test involves being awake, having a needle stuck in my throat, and making throat noises. :D Sounds fun, riiight? Maybe it'll become my regular Saturday night thing (sarcasm again)! :/
        The doc smiled and told me, "It hurts. I wont lie. I had it done on myself once just to see how it feels..." That's.... sweet or weird? ;)  He told me, "It hurts, aches, and lasts... ten minutes." :( Ah! Scary. That seems like forever to have a needle sticking in your throat!
        He also thinks, depending on the results of the test, that down the road I might need a reconstructive nerve operation on my vocal chords ... to close the gap I have in between the chords and to bring my voice back. Sigh. I was thinking... maybe I don't mind having a hoarse voice for the rest of my life. :D  But he also fears aspiration if we don't fix it. Fiiine. At least I'll be sleep during the operation.
        Anyway, enough of my complaining.  I guess I'm just getting out all my thoughts in this post.  I know it'll be ok... I hope. :D I may be scared and it may be hard to see past this bump in the road, but we'll get over it.  Somehow.  I know there are people in more frustrating situations than I am. The first six months to a year post transplant will have those tough days and mountains to climb. But I am stressed and nervous... Prayers appreciated that I get through this one.
        Anyway, that is my update. No more health problems, please, Lord...forever!  Too much to ask? ;)

 Much love,
~ Julie Jean

Tuesday, June 11, 2013

Home :)

"I'm coming home... I'm coming home... Tell the world I'm coming home..."  ;)


        I suddenly realized I never made a post about coming home.  Well, for those of you who don't know, me and Joe are back home!!  Home sweet home for sure :)  We've had a lovely time since we've been back.  We've been home for about a week and a half now, I think.  We've done so many things already - drive-in, out with friends, a baseball game, Joe's started softball again, chillin with family and friends.  It's been lovely
        We've already decided that we're going to fill this summer with fun... doing things we haven't done in a while and things we've never done... and things we always do and just enjoy doing them! ;)  There's definitely a few things on my list to do this summer... random, but exciting for me.  ;)  1) BONFIRE!  I want to sit around a bonfire and roast marshmallows, sing songs, and just feel the crisp night air. :) 2) Fishing!! I haven't gone fishing in forever.  Now, I can't touch the lake... or the fish... or the worms for that matter, but I can touch the fishing pole and do all that is necessary to catch a fish.  HAHA!  3) Camping... of course (which might include the bonfire and fishing experience...)!  4) Biking!! We bought bikes, so I'm so excited to get started on this.  ;)  Mostly I'm looking forward to just spending time with friends and family... making up for lost time while we were far away in Texas.
        Anyway, both my husband and I are so happy to be home again!  Our experience these past few months makes us appreciate every moment of life so much more.  We are blessed.

Much love,
~Julie Jean

p.s.  Since we've been home I did go to my first Royals baseball game :)  Here's a few pictures from that!

Muah! XOXO


"My heart it beats so, I can scarce hear my lover's approach..." ;)

-my day in the ER-

        So around 8 o'clock this morning I woke up with my heart racing.  Let me tell you, for those of you who don't know me very well - I do have a history of sudden rapid heart rate.  I've had it for as long as I can remember.  However, it only occurred once in a blue moon.  And as my lungs got worse over the years, due to my CF, the palpitations got worse and more frequent.  Post transplant I also had issues, as I'm told do many transplant patients.  So they had me on heart medications to keep it under control for a few months.  After that, they quit the medications to see if (because my lungs were new and healthy) the heart issues would simply go away.  It's been months since my last bad episode...
        So back to today.  After a while of my heart not slowing down, we drove to the ER.  I waited in the room for the doctor for several minutes.  Now, it'd been over two hours at that point that my heart had been racing... Then, of course, five seconds before the doctor came in it suddenly stopped and slowed down to a normal rate.  I was glad of this of course, but it was also kind of hilarious.
        Anyway, the doctor still wanted to do a full checkup on my heart - just to be sure.  They did an EKG on my heart - it was fine.  They did blood work - I guess some level was high, so he was worried about heart attack...?  Not sure what that was about.  So he ordered an MRI.  Here comes the fun part...
        I have a port in my chest, due to the fact that my veins are extremely difficult to access... so the port is there to access with needles to make it a whole lot easier to take blood and do IVs.  However,  it is not a power port ... only a power port can have contrast through it.  AND to get an MRI I needed to have contrast intravenously put in me.  And if they couldn't access any of my veins, I would have to be admitted into the hospital for the night for other tests, possibly a pic line placement in my arm (for IVs), and to be watched carefully.  So thus it began... After being stabbed in the right arm three times and in the left arm twice (trying to get my tiny veins - and yes  I cried) the IV team lady FINALLY got a vein.  Perfect timing too, because they were thinking about trying the veins in my neck!!! AH!  
        So then I got the MRI.  And anyone who knows anything about contrast knows the lovely side effects it has... bleh.  So then there I sat worrying about heart attacks or that my heart would start racing again... About ten minutes later the doctor came in and said that everything checked out and  it was all normal and I could go home.  :)  SIGH OF RELIEF!  
        So here I am at home.  I'm not going to do anything for the rest of the day... just relax and crochet.  I'm ok.  I'm just exhausted; feel like I've run for miles.  I'm going back to Dallas next week for a checkup anyway, so I'll probably get checked out there as well by the cardiologist.  I'm hoping it was just a fluke and it won't happen again.  Crossing my fingers.  Thank you all for the prayers and support through this stressful day.  I greatly appreciate it.
        It amazes me how different each day can be from one to the next.

Much love,
~Julie Jean