In the Beginning

I was diagnosed with heart failure on September 11, 2009: 57 days after giving birth to my first child and 262 after marrying my dream guy. I am prepared to beat this and live a better life than I had ever imagined for myself.

On Labor Day weekend I began feeling like I may have a respiratory infection or pneumonia. I was feeling pressure in my chest, having major difficulty breathing, and heart palpitations. It was a very busy weekend, and I was preparing to go back to work from maternity leave that following Tuesday. I quickly discounted it as my body’s was of dealing with the anxiety of returning to work. 

     I returned to work that Tuesday and felt perfectly fine; however, on Wednesday I began to feel crummy again. I was having trouble climbing the stairs and walking across campus at school. I assumed that this was just part of recovering from the pregnancy. I made a doctor’s appointment for that Friday, just to be on the safe side. I wanted to go ahead and knock out any virus or infection before I passed it on to Finn. On Thursday, I felt much better and almost cancelled my doctor’s appointment. That night I began to feel feverish and had a horrendous hacking cough the entire night and into the morning. I was able to take Finn to Ms. Annie and Mr. Arnold’s and get an earlier appointment with the doctor. After what seemed like forever, they called to the back to see the doctor. I described my symptoms and answered my doctor’s numerous questions. After doing an EKG and a chest X-ray, it was obvious something was wrong because of the amount of fluid in my lungs. He believed it was either blood clots or pneumonia, then recommended I go directly to the hospital. My mom came and got me from the doctor’s office and checked me into Providence Hospital. 

     Once I got to Providence it took about an hour or two to get settled in and all of my lab work drawn. Zac was at the school; it was a game day, and the coaches have to stay with the team after school until kickoff. He immediately made his way to me. The pulmonologist came into the room, listened to my chest, asked me about four questions, and told me it sounds like heart failure. He said, “I hope it’s not, but I really think it is transient heart failure. We’ll need to do an echocardiogram.” After about a one minute delay, I burst into tears. Since when does this happen to 24 year olds in perfect health? 

I went directly for an echocardiogram, and returned to my room. I was then sent to Radiology for another chest x-ray and a CT scan. I could barely stand for the x-ray, and by the time I got to CT they had canceled it and wanted me back in the room; the cardiologist was there waiting. When we arrived back in the room there several family members and my friend Tiffany there waiting for me. The cardiologist then proceeded to  tell us that I did have a rare form of heart failure called peripartum cardiomyopathy. PPCM is deterioration in cardiac function presenting typically between the last month of pregnancy and up to five months postpartum. I was told that it could slowly be treated with medications, but I needed to be prepared for possible transplant. To put it in layman’s terms: the left ventricle of your heart is what does most of the work for the whole heart. You have what is called an ejection fraction and that is the percent of blood that is squirted back out as your heart pumps it through. The healthy heart has an e.f. of approximately 60%; mine is less than 10%.  - A ticking time bomb-

     Since there are no transplant and peripartum heart failure specialists in Mobile, my family, doctor, and I decided it would be best to get to the nearest specialist asap: Ochsner Health System in New Orleans. They took me by ambulance on Sunday morning. I was petrified of what was to come, but relieved to be in the hands of the best.

After the Freeze...

Tuesday, January, 12, 2010

I love the freezing weather, especially when I don't have to get out in at

6:00 in the a.m. I have never gotten to enjoy the cold weather because I

have always had to get up and drag my burrrcicled self to work, and

with classrooms facing the outside pretty much since student teaching, I

rarely ever got to un-bundle during the day. Yesterday, I did have to

drag Finn and myself out into the chilly mini-metropolis of Mobile for my

labs and his six month check-up. Leaving the neighborhood at 8:00 a.m.,

my car's thermometer read 27 degrees! His check-up went great, and he barely fussed

with his shot. However, he is starting a little bit of stranger anxiety beginning with some

of Beth's sweet coworkers and wrapping it up with Dr. Sands. He weighs 21 lbs. and

measures 28 inches in length: I am rearing He-Man over here! When we arrived back

home and it had begun to warm up, we took a walk down to the pond to check things

out. Of course our new porch tenants, the ugly ducks, followed us down in a straight

line. Why can't the mallards be the ones crashing next to the house? Finn was all

wrapped up in his little brown hat and mittens. While we were checking out some large

deer tracks, the mallards flew over to join us. Finn watched the ducks follow us all the

way back up to the house, and expressed his dislike for coming inside as soon as I shut

the door behind us, but it wasn't anything that jar of Gerber sweet potatoes couldn't fix.

=) These little moments make staying home much sweeter: living in the quiet country

doesn't hurt either - another aspect of life I am growing accustomed to now. I never

realized how much of a city girl I was until I moved where I was thirty minutes from

everything as opposed five minutes from everything. Plus, it prevents as much frivolous

and impulse purchases, i.e. Target, Best Buy, Walgreens, etc.

I am actually looking forward to Tuesday's hepatology appointment in New Orleans, since

I get to go by myself. I am not going to stay the night since my appointment isn't until

9:30. Maybe I'll get to hit up a couple of the antique shops for my new project: the wall

in the dining area.

I was able to come down on my steroids again, and I can feel it. I am sleeping a little

better, the head-to-toe swelling is slowly going down, and the munchies aren’t as

ravenous, neither are the hot flashes. My next biopsy is on February 2nd, and hopefully I

will get to go down again (and color my hair)! Hehe. I will be four months out then; six

months is the big one; if I can keep it going like this many of my strong restrictions will

be lifted or “loosened.”

I also want to let everyone know that within a couple of weeks I will be moving to my

own blog and webpage. I have already purchased the domain name and host. I really

want to be able to reach more folks by showing up in search engines and in the blogging

community. I will also be able to insert photographs/graphics and details with more

freedom and creativity. There have been so many little things I have wanted to spill on

and get feedback for that I not able to do on here. Upon searching for blogs for pre and

post-transplant support I was very disappointed. Hopefully, I will eventually be able to

create a community for those facing the possibility of a transplant, living with heart

failure, and those dealing with their new lifestyle post-transplant. I also hope to put a

thriving face to organ donation and encourage those dear families having to face that

end of the spectrum. I cannot imagine the fear and unrest these families feel. Some of

them may never heal enough to be able to face the recipient of their loved one’s organ,

but I pray for peace to fill the souls of these noble angels

Roll Tide Roll

Thursday, January 7, 2010

Geez...this disability paperwork is no joke! I am not sure if I have previously posted about this

or not, but I am yapping about again. Once again, let me say how thankful I am that Beth kept

such a detailed, dated journal because it has definitely been a lifesaver in helping me list every

single test procedure and medication administered since the date I became disabled. I know that

it is rare that someone is automatically approved without having to appeal, but it would really be

nice if I didn’t have to deal with anything additional.

I am sitting here sifting through paperwork, sipping my coffee, and watching the Today Show as

Finn continues to sleep. I hate to brag, but I am so thankful everyday that I have a five-monthold

who sleeps an average of ten hours per night, and I didn’t even have to anything. He started

eating fruit last night and loved his apples. Maybe tonight we’ll try bananas or pears. He has his

six month check-up Monday. That should be interesting since he already weighs twenty pounds!

It has been brought to my attention numerous times that I should write a book about this

experience. Holy cow! How in the world would I manage to do that with my ADD??? I do not

know where to start, let alone fill an entire book. I suppose I could direct it at those going

through similar situations, throw in some humor, childhood flashbacks, etc. Is there a class to

take on memoir writing? I know there is for novels, or maybe that is how I should approach it -

with some embellishment; however, at this point I cannot think of anything that would require

any more embellishment than what reality hans’t already supplied on its own.

There are finally some good movies out on dvd, and I have been catching up on my media

through Netflix, and yes, all the hype is oh so true! Netflix is the most ingenious concept that I

have taken advantage of in a long time. I own way too many sub-par movies because I didn’t

turn them into Blockbuster on time. Netflix is the perfect enabler of the procrastinator. Plus, I

can rent as many as I want for a flat rate and free shipping! This works out great for tv series

that I want to catch up on at the moment. Some of the films and shows are available instantly

on the website. With instant view, I have watched all five previous seasons of The Office over

the course of the past month. This works out great since I am usually two - three hours behind

Zac going to sleep. I just stick in the earphones and cuddle up with my laptop and watch as

much or little as I like, but then again when I get the giggles it tends to disturb him even though

I try to stifle it.

I want to take advantage of this time at home because I will probably never get an opportunity

like this again. I am in the process of creating a realistic list of domestic and professional goals

that I hope to accomplish within the next year. I will reveal the list in my next post: maybe by

then I will have created it. :)

Now for what is really weighing on my mind today: the game. :) I so badly hate that I cannot

be there, but as far as I am concerned it should be called the “petrie dish” and not the Rose

Bowl. I cannot imagine the lecture I would get from every direction if anyone at clinic ever found

out, and with my luck I would get violently ill out there and have to be hospitalized then have to

tell them I was on the other side of the country. They would probably relinquish all responsibility

and tell me to find a new health care system! I send all of my spirit and support to Pasadena

tonight: ROLL TIDE!!!

To ER I Go

Sunday, January 3, 2010

As I sit here surveying the massive amount of Christmas decor I have yet to pack up, I

definitely feel more up to posting a blog. :) Our holidays were wonderful. Finn's first Christmas

season was much fun for all. His Aunt Kylee and Uncle Rob got to spend the week of Christmas

here in town with us and the rest of Zac's family, which we throughly enjoyed. Two days after

Christmas I begin feeling feverish and achey. By the time I took a rest around 1:00 p.m. I was

feeling so terrible that I couldn't sleep. Since one of the first signs of rejection is fever, I am

supposed to call the clinic anytime that I run a temp that is 99.9 or higher. I called and spoke

with Dr. Ventura, and he told me that if it continued to go up that I would have to come in to

the hospital. Well, long story short - my fever continued going up and by the time we decided

that I should go in, I could not even sit up to change out of my pajamas. We went straight to

the Ochsner ER, where there was a 163 minute wait! However, being a transplant patient I was

made top priority and only had to wait about 10 - 15 minutes while found me a bed in the ER

and contacted TSU about going up there. My temp. topped out around 101.9, and the body

aches were excruciating. It took almost two hours to get my IV put in, blood work and cultures

drawn, and IV pain killers going. Everyone there thought for sure that it was the flu, and I did

as well. Let me tell you, being “stuck” in the hospital is not so bad when you feel like hell. This

was not near as frustrating as last time. I continued to have and severe headache through the

next day but the pain Dilaudid took care of the body aches. My blood work and test results

showed no evidence of the flu or any virus! I was very glad to hear this and that it wasn’t

caused by anything heart related. It was my Prograf level. Prograf is an immunosuppressant that

I take twice a day. Everyone’s liver metabolizes it differently; therefore, the doses are adjusted

regularly to accommodate your own body needs. When I have blood work drawn, this the main

level that they check. Typically, we like to see it around 9 - 13. It has gotten up to 23 before

and that was major; my dose had to be adjusted. When the level gets too high it can cause

liver and kidney damage and other physical ailments. Well, my level the night that I checked in

was 65!!! Dr. Mandras and Cindy both said that they had never seen a level this high before -

period. Dr. Mandras also added that I typically at a level like that I should have been seizing.

Once again, my body compensated and all that it managed to do was make me feel like hell for

a day or two. My headaches continued, and when my level was checked again it was still in the

40s. She released me after two nights, and cut my Prograf dose in half. I go to lab in the

morning to see how the level looks on the new dose. On Tuesday, I have my echo-guided

biopsy and clinic visits. If everything looks good I will get to come down on the steroids again!

The swelling is coming down a bit finally. I am 1/4 of the amount of steroids that I was on to

begin with thank goodness. I am also hopeful that she will clear me to begin cardiac rehab and

will be able to exercise and begin getting my strength back up: you wouldn’t believe what two

months in the hospital will do to your arms and legs. Sometimes I forget that I can’t do certain

things yet that I used to take for granted like getting up out of a chair or couch, bending over,

lifting, etc. How about this: a while back I dropped a ponytail holder on the bathroom floor and

then squatted down to get it without thinking - and I was stuck there. Thankfully, Zac happened

to be within shouting distance and was able to lift me painfully from the waist, since you can’t

pull or tug on my arms either because of the sternum precautions. That was not so embarrassin

g. However, just before I left the hospital Beth had brought me some of Target’s Monster Trail

Mix. It is soooo good! Anyway, I knocked it onto the floor of my hospital one night around 1:00

a.m. or so while I was watching T.V., so I had to get up and find a pair of gloves then clean it

up by supporting myself with the bed and not bending my knees. Of course that is when nurse

tech came in to take my vitals and blood sugar. Plus, I had already picked up most of the raisins

and nuts, so it just looked pathetic - scrambling around on the floor for M & Ms and chocolate

chips.

Transfer of Griswold

Friday, December 11, 2009

As I sit here in the middle of my glowing living room, I cannot help but think, "home sweet, sweet, sweet

home." Oh, Christmastime, how I love you as well. My first artificial tree looks pretty darn amazing, if I

do say so myself. I love when the sun starts to go down everyday because then my living room is filled

with the glow of the tree, table, and other random light decorations that fill the living area with hues of

red, green, gold, and white. Now, I just have to get some gifts wrapped to fill empty space beneath the

tree.

The results from Tuesday's biopsy were good: no more signs of rejection. They adjusted some of my

anti-rejection meds because of some crazy levels in the lab work, but those are easily fixable. The

steroids haven't been brought down yet because of the new adjustments. They want to see how those

level out before adjusting the steroids as well. Monday's labs will hopefully give an answer as far as that

goes.

I am still adjusting to being home all day and unable to run any errands. Which is probably good because I

would want to be going, going, going all of the time when I do not need to; however, it makes Christmas

time extremely difficult: shopping and getting to see all of the decorations out and about. So far my

shopping has consisted of the Ochsner and Spring Hill Memorial gift shops. Ugh. I will say they do get in

some cute stuff that you can't find too many other places. Of course I have done some internet shopping,

but that gets pretty old after two months. Webpages do not change as often as store displays, believe it

or not.

Finn is loving all of the lights and fiber optics around here, too. We have a lot of extra decor that I used

in my classroom last year, so we are borderline Griswold. He has been watching Christmas Vacation and

Charlie Brown's Christmas, too. He loved watching me string up my ornament chandelier. My mom gave me

an oblong reindeer pillow with crimson bells on each corner, and he has figured out that if he hits it with

his foot, it will jingle. This keeps him quite intrigued. In addition to the pillow, he has become fascinated

with touching my face and mouth. He will even mush my cheeks and and bump heads with me; it's

hilarious. Speaking of my face, I will end with this little story: I went over to my cousin's house on Friday

for her to take some Christmas pictures. She has twin four-year-olds, whom upon my arrival were saying

things like, "Is that Bethany?," "Bethany's here!" etc. Then it came - "Mommy! That's not Bethany!

Bethany's face is brown. That's not Bethany. Bethany's face is brown. That's not her." Thanks for

reminding me. =) At least they didn't say, "Mommy! That's not Bethany! Bethany's face is orange. That's

not Bethany. Bethany's face is orange. That's not her."

Hook Me Up...To a Holter Monitor?

Tuesday, December 1, 2009

Ohhh, it's so good to be home, and it's a bonus knowing I have my days to take care of things

and not return to work. I guess that means there is no excuse not to have my ducks in a row.

=) Dr. Patel let me go to the apartment Sunday night and call the clinic Monday morning about

the Holter monitor. Tara told me I could go home and have it installed at Spring Hill, where I will be

going for labs and other stuff as needed. I will still go to Ochsner every other week for labs,

clinic, and echo. Since I am two months out now, I only have biopsies once a month, which is

tough to be happy about. Although I hate them with a passion, they cannot reduce my steroids

without a biopsy. I thought that the night I went into the emergency room it was hard to go

back into the hospital, but this was ten times worse. It definitely makes you want to make sure

that you follow all of the rules to prevent ANY compromise that would cause you to have to go

back. After being actually AT HOME, being in the hospital and not actually requiring anything was

soooo nerve racking because it still took forever to go to sleep, lab came in at 3:15 a.m., echo

came in at 4:30 a.m., and they came to get my vitals at 5:00 a.m. After that different doctors,

pop in anywhere from 6:00 a.m. to 9:00 a.m. and want to talk. It’s crazy. I was so ready to be

back at my house. Being at home made even the apartment feel confining. Last night as I was

picking up and unpacking, I told Zac that it felt like I was just moving out on my own for the

first time; I was so excited about every little thing. It’s nice to get back into old clothes, too.

Mom came over tonight and brought some more of my Christmas stuff from her house plus

some cute stuff for Foo from some Black Friday scavenging and my makeup that Sephora didn’t

have. She was able to be here for the unveiling of Moses new condo. Since he has to stay

outside now, and the nights have been so bitter, Zac built him a home about six feet off of the

ground on the back porch this afternoon. That way nothing can get his food either. He has been

inside for five years; I bet this is blowing his spoiled, fuzzy little mind. I say spoiled because

even on the back porch he is just that: his best buddy has lined the barrel he sleeps in with a

heating pad, pillow, and a fleece camping blanket - no lie. Pictures to come...no comment.

The monitor they put on me today is just like the hospital telemetry with the sticky leads, but

the transmitter is only about the size of a pager. I have to go to the hospital at 7:30 a.m. each

morning that I have it for them to download the activity it recorded. So I will go back in the

morning, and I will have labs drawn there as well. Yuck. My arms never have time to heal from

the blood draws because the immunosuppressants drastically slow your body's healing ability:

for example, the holes in my neck from the past three biopsies. It doesn’t have a clip on it so

you have to have a pocket. Needless to say, it fell out of my waistband and the batteries came

flying out on the tile floor, so I will probably have to wear it an extra day. Oh well, so what -

I’m wearing it AT HOME!!!

For each new morning with its light,

For rest and shelter of the night,

For health and food, for love and friends,

For everything Thy goodness sends.

~Ralph Waldo Emerson

Grrr...

Saturday, November 28, 2009

My how things can change in 24 hours. If you read yesterday's entry, you

know how well things were going. About two hours later, my heart rate

dropped into the 50's and became irregular. When I called the doctor, they

wanted me admitted immediately since it is still so close to transplant. We left

Finn at his Gram & PawPaw's and came straight over to NOLA. Of course

everything normalized by the time I got fifteen minutes down the road. Dr.

Patel wants me to stay until Monday when Dr. Ventura get back, while they

decide to put in a pacemaker or just a satellite monitor. With the satellite

monitor I would just push a button when my heart rate felt irregular, it would

record the activity, and send it to the hospital.

I am so frustrated. It is horrible sitting in here waiting until Monday when I

had so many plans for the weekend. I am so ready to get my Christmas on! I

was going to go to my mom's today and pick up my Christmas decorations

that are still there. Zac is gone to pick me up some La Madeline's for dinner

right now. I cannot believe it's only 3:30 p.m. I thought surely I would only be

here one night. This is awful; I can't stand it. Once you have been home, had

your freedom, been in your own house, visited around for the holidays, it is

torture. Monday, Monday, Monday come soon! I really do not know what else

to say. Misery.