Beja's New Heart Parts

Dos Semanas

2009-02-18T14:30:00.001-06:00

Two weeks until I can drive. That can't come soon enough. Getting better and doing well, but starting to go really stir crazy.

I went to the store today!!

2009-02-06T16:11:00.002-06:00

Went to Sams Club today with my mom- walked around quite a bit. It was GREAT to get out of the house. I didn't pick anything up and I stopped a few times to sit down for a few minutes and rest (luckily there are lots of recliners/ comfy chairs around the sams club) but it was great just walking around looking at stuff and convincing my mom to buy me things. We got a bag of 5 avocados which I am super excited about! I have been seriously missing avocados since I left Texas...they were so cheap and so fresh and so good...mmmmmmmmmmmm.

getting better, getting bored

2009-02-04T18:00:00.002-06:00

Hey all,
I am getting better and better and stronger and stronger everyday. I'm walking about 15-20 minutes a day on the treadmill and hope to start going longer and longer in the coming days. Hopefully it will warm up here soon and I can do some outside walking too- I am getting pretty tired of sitting around the house! Went out to lunch this weekend and it was great to get out of the house- even if I had to come home and take a long nap. I am still kind of sore but it's more discomfort than pain at this point. I am still having a lot of trouble getting comfortable and sleeping at night but it is getting easier. I am still having to sleep basically sitting up which is just killin me as a formal stomach sleeper. All is basically well here- getting better and better everyday and more and more bored of sitting around the house.
Thanks again for your support everyone!

Getting better!

2009-01-30T10:25:00.003-06:00

Feeling better and better everyday. I've got a ways to go but everyday is a little bit better. Everyone has been so nice and supportive. I have gotten some beautiful flowers that I am really enjoying. My dad is getting me a membership at his gym so I can go there and walk and eventually ride the bike and workout and get back into shape. I think we are going to go down tomorrow so I can walk on the treadmill for awhile (it's just to cold for me to get my walks in outside right now).

I'm HOME!

2009-01-27T07:27:00.002-06:00

YAY YaY YAY!
I was released from the hospital around noon on Sunday and made it home a couple of hours later. I still feel like a mammoth stomped on my chest but it is so so so so so much better being home and so nice having my kitty by my side again (even though I keep having to block him from stepping on my chest (he's trying to lick my face!)). My biggest struggle right now is trying to sleep. It's really hard to get comfortable and the pain meds im taking keep making me have hot flashes and chills. I've also been having some really whacky dreams.

Helloooooooooooooooooo

2009-01-24T15:14:00.004-06:00

Hey everyone!

This is Rebecca updating on my own for my first time since surgery! I'm doing pretty good, other than feeling like i got kicked really hard in the chest by a really pissed off horse with really big feet. They took out the last chest tube earlier today and I feel a lot better with those gone. I am going to be getting a blood transfusion tonight because my blood counts are kinda low- I should feel alot better after that. I will be getting a chest x-ray tomorrow morning and if that goes well then hopefully I will be released tomorrow afternoon! I haven't had a chance to read all the comments and such yet but thanks for your support everyone. hope you are all doing well.

Boo Dilaudid! part II

2009-01-24T11:59:00.002-06:00

ok.....I had written a nice long account and it wouldn't publish so here is the edited version:
D made her barf,better now on percocet,never get to update this because they never give you a minutes peace here,B is the color of weak lemonade and will get 2 units of blood today,...here they come again...
more later from Momja

Boo Dilaudid!

2009-01-24T11:40:00.002-06:00

May be going home tommorrow

Yea dilaudid!

2009-01-22T15:55:00.002-06:00

The Beja is doing better all the time. Today,the neck line was removed which seems to be a very big deal,and precipitated a brief return to dilaudid. Percocet now. She is walking a little and eating a very little and barfing a bit. But,keeps getting better and better. We are on track to go home this weekend if nothing unexpected happens.
Most importantly,the loot is rolling in with a special bear she is now hugging to her incision.

She is not quite phoneworthy but wants me to thank those of you who have been so supportive. She will be in touch soon. I am reading your posts to her. Momja

good news

2009-01-21T10:14:00.003-06:00

Wed 11:15 from Momja:
great news! Beja is soooo much better! Last night we finally got to see her in ICU and they said she was doing really well.....she didn't look it,to me. Late last night she was extubated and this morning is sitting propped up in her own room(out of the ICU!) and sipping a little juice. She is not yet phone or blog worthy but will be soon and I know wants to keep in touch with all her friends and family.
She is in Emory University Hospital ,room B459
1525 Clifton Rd, NE
Atlanta.GA 30322

the longest day

2009-01-20T14:15:00.003-06:00

from Momja:
After arriving at the hospital at 5:30 am,as ordered,
Beja was made to wait until 1:45 to be taken to the OR.
This,along with needles and IV's etc,was pretty tortuous.
Finally at 3-ish we have received word that the surgery has been under
way for about an hour and things are going well.
Beja has had a very tough day. Most importantly,things are going well! More in a few hours when she is out of surgery.......

Afternoon update...

2009-01-20T12:55:00.002-06:00

This is Crash's (aka Rebecca's) brother Matt. After some scheduling errors and minor difficulty with putting in IVs she entered the operating room at around 1:45. The surgery before hers (which had the doctor informed us there was a surgery before hers we wouldn't have showed up at 5am...) took longer than expected. The surgery is supposed to take about 4 hours, and then it will probably be another hour or two after that until we get to see her. Sorry my writing is not as amusing/clever/funny as crash's blogging...she got all the creative genes. I'll post with updated we get from the OR.

still waiting...

2009-01-20T06:46:00.003-06:00

uncle Jeff, Cousin Emily and I

2009-01-20T06:10:00.005-06:00

me and my padre. He didnt even know his computer had a webcam.

my bracelet says i am a "fall risk"

X Marks the spot! My doctor drew an x on my chest so he would know where to cut...how hard could it be....

Here is a picutre of me and my mom in the waiting room.

more waiting

2009-01-20T05:47:00.002-06:00

So apparently there was some kind of "emergency" and my surgery got bumped to Dr. Kogon's 2nd spot. He came by and talked to us and expects it to start around Noon. lame lame lame. I am hungry. Im really tired of waiting. really really.

My valve.

2009-01-16T17:48:00.003-06:00

So my doctor is going to be using a porcine (pig) valve made by St. Jude medical. It's called "The Epic" hahaha....that amuses me for some reason.

here is the valve : http://www.sjm.com/devices/device.aspx?name=SJM+Epic+Valve&type=20&location=in

I think you might have to copy and paste the link.

I asked him what happened to the rest of the pig...he seemed taken aback...apparently no one had asked that question before. I am still trying to find the answer.

Pre-op is over

2009-01-16T16:03:00.002-06:00

Just got home from my pre-op appointment at Emory. I met with my surgeon and his nurse and another nurse and some anesthesia people and another nurse and physicians assistant and...ok I think that was it.
It's all good to go.
I have to be at the hospital at 5:30 am Tuesday morning.

They have decided to bypass my right coronary artery but it should add only about 30 minutes to the surgery so we are looking at 4-5 hours total.

A new president, heart valve, and coronary artery all in one day! what more could I want?

here we go

2009-01-13T22:19:00.002-06:00

One week and counting.
Pre-op on Friday.

Ode To My Right Coronary Artery.

2008-12-22T16:21:00.003-06:00

My cardiologist just called me in regards to my CT scan last week. The scan showed that I have an anomalous origin of the right coronary artery. Basically one coronary artery is supposed to come off each side of the heart and supply that side of the heart muscle with blood. The artery that supplies the right side of my heart actually originates on the left side of my heart (so both of my arteries originate on one side (the left side)).

This may need to be fixed at the time I have surgery. It can cause a lot of problems if left alone; but fixing it can also cause a lot problems (there is a high incidence of early graft failure). The likely solution would be a bypass of this artery. One of the problems with doing this is the durability of a bypass. Since I am so young my cardiologist is concerned with the ability of a correction to last for 60+ years. I will be speaking with my surgeon about this in the next few days; but he likely wont know whether he is going to fix it until he actually gets in there and sees what it looks like.

One good thing

2008-12-21T20:36:00.002-06:00

So word travels fast down the Hudson family grapevine and I have been getting lots of supportive phone calls and messages from my extended family members. Today one of my uncles called me to tell me that he and his daughter (one of my closest cousins) are going to drive down (over?) from Arkansas for my surgery. That made me really happy. I wish it was under better circumstances but I am really excited about getting to chill with my cousin!

Oh and my mom took me shopping in Atlanta. Make that two good things.

Official Surgery Date!

2008-12-16T17:02:00.003-06:00

So I am now officially scheduled for my Pulmonary valve replacement and possible Aortic valve repair at Emory Hospital on January 20th.

I was hoping I could get squeezed in earlier and get it over with, but really I am just glad to have a date.

Unfortunately the 20th is the Tuesday after MLK day (when Emory is closed) so I have to go down to Atlanta Friday for pre-op then come back to Chattanooga then go back to Atlanta Tuesday for surgery (or maybe we will just stay in Atlanta-logistics are still being worked on). It was either Jan 20th or December 23rd and I don't want to be in the ICU for Christmas- not because I care about Christmas that much (we aren't really even celebrating this year), but I don't want the 3rd string people who are pissed off to be working on Christmas taking care of me.

Here we go!

so now

2008-12-09T08:50:00.003-06:00

I am scheduled to more tests the 18th and 19th. That was as early as they could get them all in a 2 day period and we are trying to avoid any more 6 hour trips than necessary. So....this means surgery not until the second week of January- tentatively scheduled for the 6th. I am so tired of waiting.

Emory Appointment

2008-12-03T22:20:00.002-06:00

So I had my appt. at Emory.

Heard pretty much the same thing they told me in Texas a couple of months ago before I moved: Pulmonary Valve definitely needs replacing, Aortic valve is leaking but they arent sure what to do about it yet (it needs something sometime but- repair? replace? wait till the next inevitable PV replacement (im going tissue) and replace it then?)

Highlights:
My heart is apparently very photogenic and they asked if they could use my Echo (2 & 3D) images in a research study- (I said "sure!"). 3 or 4 different people came in and said things along the line of "wow those are some great images".

so now they want: a CT scan (well they wanted a MRI but the metal rods fused to my spine made that a no no); a Nuclear Stress Test, A Pulmonary Function Test, and they want me to go to the genetics clinic and get screened....they think I might have Noonan's syndrome (which apparently (my mother just told me) years and years ago my pediatrician thought I might have but eventually determined I didn't have enough features of (I clearly don't have any of the mental disability which is generally present)). If I do have it I am on the very high end of the spectrum. It would explain the concurrent PV and AV problems (concurrent PV stenosis and aortic regurgitation is apparently pretty rare)

so hopefully I will be going back down to Emory (6 hour round trip) one day next week to get all that done and then onward to surgery.

If there is room in the surgeons schedule we are looking at December 16th (the nurse said she thought there might be 1 open spot they could put me in) if not then then probably the week after Christmas.

Everyone was really nice and seemed on top of their game so I'm feeling pretty confident.

The nurse practitioner was GREAT about answering all my questions and addressing my concerns. Apparently she used to do pediatric ICU nursing and took care of me 22 years ago when I had my first surgery! Awesome!
She made me feel alot better, especially about my back. She even said she would make sure that they put extra padding on the operating table for me and gave me extra muscle relaxers and anti inflammatories afterward! Fantastic!

6 hours in the car and much waiting and testing later and I'm really freakin tired.

The times, they are a changin

2008-11-26T23:11:00.003-06:00

back in Chattanooga now....its kinda strange.

Appt. at Emory 1 week from today. echo, ekg, cardio, surgeon. day of fun.

Happy Thanksgiving!

Have you hugged a Native American today?

Tick Tock!

2008-11-13T18:00:00.006-06:00

I am Rebecca, Beha, Beja, Bebs, Behizzle, Baywho, Bebbs, Bebbyboo, Becca and so forth.

This blog is primarily a means to update my scattered friends and family on my upcoming Open Heart Surgery (who hoo!)

You can access my other, non heart surgery, blog if you look at my profile.

Instead of turning my other blog into an "oh shit I'm having heart surgery blog" I made a whole new one. After all my life isn't ruled by my heart, why should my blog be?

So yea- I'm having heart surgery. Specifically I am having a pulmonary valve replacement and an aortic valve repair- they may end up having to replace the aortic valve but lets hope they are able to repair my natural one!

So why? why oh why oh why?

well I was born with a congenital heart defect called Pulmonary Valve Stenosis. The pulmonary valve is the the valve that lets blood go from the right ventricle into the pulmonary artery- which carries it into the lungs to get oxygenated. This valve has 3 leaflets that open and close (open to let the blood into the pulmonary vein then closes to stop it from flowing backwards). My pulmonary valve was all misshapen (they call is dysplastic) which made the opening too narrow. Not enough blood could get from the right ventricle into my lungs... they took it out when I was 19 months old. That's right they just took out the whole valve. They also enlarged the right ventricle outflow tract (basically the channel the blood goes through to get out of the right ventricle- the valve is like the gate to this channel) using a patch that goes from the right ventricle to the pulmonary artery (its called a transannular pericardial patch)

So you mean I don't have a pulmonary valve? at all?
Yep- many people live for many years without a pulmonary valve- better no valve than one that's too narrow and all stuck together.
Here's the rub though- because I don't have a pulmonary valve there is nothing stopping blood that is pushed into my pulmonary artery from flowing back into the right ventricle. This is called Pulmonary insufficiency (or regurgitation). Luckily my heart muscle is strong and pumps hard so most of the blood is able to make it up and out into my lungs (where it gets oxygenated). Some however does flow back into the right ventricle (RV) and this makes the RV have to work harder. Over time this can cause the RV to dilate. It doesn't always happen in people with absent pulmonary valves- but its pretty common. After 22+ years pumping with no valve to help it out my right ventricle has started dilating.

But wait! It gets better!

I have recently found out that I also have moderate to severe Aortic Insufficiency. No one is really sure why this is. It could be a defect I was born with that was really mild and undetected but worsened recently or it could be a result of the extra work my heart has had to be doing as a result of the screwed up pulmonary valve. The aortic valve is the valve that opens to let blood go from the Left Ventricle into the Aorta and then out into the body. For some reason my valve isn't closing right so just like on the other side of my heart some of the blood is flowing backwards back into the ventricle (the LEFT one this time). Note: heart drawings are backwards, these drawings are oriented as if you were the surgeon, not the patient.

So in a nutshell on both sides of my heart blood is flowing backwards down into the ventricles where it is making them dilate.

So it's time for a tune up.

I'm in Texas right now but decided with my parents that it would be best if I went home for awhile to get this all taken care of. So in 11 days I will leave the Lone Star state and go back to Chattanooga, Tennessee (my hometown). I have an appointment on December 3rd. at Emory in Atlanta (where I will be having my surgery) for an echo/ekg/bloodwork/cardiologist appt. (Dr. Wendy Book) and then I will meet with my surgeon Dr. Brian Kogon. What a Fun Filled Day! We will likely schedule the surgery at this appointment (unless they decide they need to do more tests first). I will let everyone know when I know more.

If anyone has questions or comments just let me know!