My pulmonary valve replacement story with advice and tips

At 22 years of age, I went through one of the most scariest events of my life...my second open heart surgery to replace my pulmonary valve. This surgery has literally brought me back to life and for that reason, it was worth it.

I don't know the reason why You brought me here...I'm going to walk through the valley if You ask me to...

I hope my story and my advice brings comfort to you and eases your fears and worries as you are about to embark on your own journey to the road of recovery.

My Story

An Echo and and MRA confirmed my worst fear. My heart was working way harder than it ought to, and the right side of my heart was enlarged. I knew this was for the best as my energy had been on the decline so much so that all I wanted to do was sleep to the point everyone thought I was suffering from depression. It was such a slow decline, it took me the longest time to realize what was going on.

The phone call came. 9 cardiologists met together to decide if the ticker needed a tune-up, and surgery was the only option for a bright future for me. And so it began...

First things first, my surgery had to be scheduled... for scheduling your surgery, my personal advice- you want to be the first one on the roster for that day s0 you don't have to wait...

I researched mortality rates...good news, it was a very VERY small percent that did not make it through this surgery (I would say the percent number, but I don't remember where I got it from and don't want to steal someone's research, so you're going to have to trust that I am being legit or do your own research) ...so I decided there was no need to plan my funeral.

People freaked me out. "OH MY ***!" was the general response to me having surgery. Don't let them freak you out, as it's just a little shocking to them that a 20-something would need this intense of a surgery. If it does freak you out still, like me...honestly, your best bet is to quit talking about it with people that don't know your situation very well. Harsh, but say as little as possible. People mean well, but their reactions don't help...especially dramatic chicks.

Two weeks before

Some hospitals/doctors will want to schedule a "consultation" (if you will) appointment with you and the surgeon and their/your support team if they sense you are uncomfortable with the idea of having this surgery, or if it standard for them. I met my surgeon and the head hancho nurse (sorry Sue, I will look up your job title). Make sure you get the nurse's business card incase any serious questions or concerns come up, you can contact them prior to going back for your surgery. E-mail is your friend! :) I met my surgeon and immediately became more comfortable...err...okay... with the idea of this surgery. I believe he described in lame mans' terms what the surgery consisted of. The valve replacement actually does not take a lot of time itself. My doctors say it generally takes them an hour to get you on the heart and lung machine, an hour for the replacement, then an hour to get you off the heart and lung machine. Mine took a lot longer, as they had trouble getting me to breath on my own again...so plan for longer. Honestly, a lot of people could have probably skipped this appointment but I found it valuable to know whose hands I was placing my life in and who my advocates were. Don't be afraid to ask questions!

If you break out from stress, I suggest mellow, low stress two weeks before your surgery. My surgeon told me he wouldn't operate if I had any acne anywhere near where the incision was to be, as that valve is super vulnerable to infection the first month or so.

Do lots of things you won't be able to do for awhile...drive, take baths, enjoy the fact you are allowed to pick up a gallon of milk...do some cartwheels, whatever it takes to whoop it up...

The Day Before

There is a LOT of prep that needs to be done the day of surgery. I went to a University hospital, and probably spent 4 hours there. That day, I had my blood drawn to find out my blood type, urine test...and heaven knows what else they did. The surgeon drew on me where he wanted to make my incisions...I also met with the anesthesiologist for the first time so he could measure my throat and ask me a million questions. Be sure to ask him any questions you have and tell him of any fears. For me, I was scared about waking up during surgery, to which he reassured me that only happens to really, really sick people or people that have emergency surgery. I found it comforting I wasn't going to wake up as they're sawing me open. (Thank you Oprah for your medical mistakes show, grrr) I also met with all the nurses and other staff that would be in the OR, assisting.

After the hospital, we went to the local Olive Garden. I wanted to make sure to have a heck of a good meal since I wouldn't be allowed to eat for a LONG time... my advice= stuff your face before midnight, eat up because you might not enjoy food again the rest of the week...(but then again, maybe you're not a wuss like me!)

That night, I had to scrub with special with soap they gave me to prepare for the OR. Take the longest shower of your life! Thoroughly wash EVERYTHING. It will a few days at least before you're going to want to shower, so use this time to de-skank-ify! :) I think my skin was bright red when I was finished.

Pack and get organized the night before. Forget your cute Victoria's Secret pajamas...if anything, bring comfy clothes that will fit over a heart monitor (aka the devil) and you can get on and off fairly easily. I wouldn't pack too much stuff if you are the patient. I had surgery on Tuesday and didn't wear my own clothes until Friday, the day I got sent home. Bring something that calms you down. For me, it was my iPod that had praise music on it to listen to when it got ROUGH. Also, bring chapstick. Surgery dehydrates you.

This is probably the time I was the most emotional. I've never cried so hard in my life. We spent a lot of time together praying as a family and it helped calm my fears, but I am human! Parents, be there for your kid. Don't try to be rational, just be there and listen and offer your support.

The Day Of

I was checked in upon arrival and changed into a gown. They do all the normal stuff, weight, blood pressure, etc. Then comes the horrible part...IV in the hand! Ouch! This is when I had to say goodbye to everyone but my parents and was taken down to the surgery waiting area, which is a big room of beds separated by curtains. I was put in a bed and totally started to panic. I was begging every nurse to give me meds, and eventually they did. I got something not only to put me to sleep but to wipe my memory. I have absolutely no memories of having to say goodbye to parents or being wheeled back to the OR. I came to in the OR for a few moments, but all I remember is feeling drunk-like, very out of it and people were running around all over the place.

Six hours later, I woke up and was told to hold as still as possible. I was still really groggy, and I tried to tell them there was something in my throat (breathing tube) but I couldn't talk so I just did as I was told and passed out again...I wasn't scared when I woke up, I felt at peace...like wow, I can't believe it's all over.

The first hours after

ICU was the best time of my hospital stay. I chose to stay in PICU, and it was a great decision. I was allowed to have as many visitors as I wanted, and they kept it quiet on my floor. (I've heard adult ICU was another story...)

I remember I was talking a mile a minute and no absolutely no idea what I was saying. I was on a strong dose of morphine, and it was great! Enjoy this...it's pretty a funny feeling, I'm not going to lie. I remember shouting "dad, slow down, you're driving too fast!" and talking a mile a minute. Apparently I was pretty funny...

When I was finally allowed to drink, I drank way too much too fast. Sip on water, don't chug it. You'll be beyond thirsty but take it slow unless you want to puke it up. This is also known as common sense, but you have to make a conscious effort to overcome that desire :)

Here is my advice, mixed in with my story:

Tell your doctors your fears/concerns:

Talking through my fears with my doctors, nurses, and anesthesiologists was extremely comforting for me. I was really scared about waking up during surgery, and it didn't help that Oprah had some horrible medical stories show on (Thanks, Oprah...) with a lady that it happened to. My anesthesiologist told me that only happens to people who were really, really sick, so I shouldn't worry about it. Relief, sweet relief.

Stick Up for Yourself

1) Always ask your nurses what medications they are giving you. I was almost given Morphine, which I was really allergic to. Doctors don't always take the time to fully scan your charts before they prescribe something... This is more important once you're on a regular floor. ICU is pretty one on one attention (enjoy it and stay in ICU as long as they let you...seriously.)

2) Once on regular floor, if you get stuck with some whacked out roommate who is on so much morphine she thinks the ceiling tiles are people (my experience), fight to get out of that room. Raise hell if you have to. My surgeon got involved when he found out she had kept me up all night during a visit and I wasn't getting any sleep and got me into a private room... You are your best advocate and no one is going to fight for you like you will. Although make sure your doctor knows what's going on.

3) Leave me alone, nurses! I, thank the good Lord, somehow got my nurses to only come take my

Pillows, pillows, PILLOWS!

For the ride home, bring lots of pillows... every bump for me felt like we were going through a gigantic pothole but i had pillows under me, behind me, and one between me and the seat belt to help. In my opinion, you want to do everything to help protect your sternum!

Normal- my new reality

Yesterday, I went to the cardiologist for my annual appointment and apparently the news hasn't hit me yet...so maybe in writing this, I'll come to grasp the wonder of it all...

My heart is normal size. NORMAL. Me? My heart?! NORMAL? What?! I was told this would never happen! Although I was told the pulmonary valve replacement would help, my heart was always suppose to be on the bigger side.

The most amazing part in all the poking and prodding they have done to me over the years is getting to watch the Echo. There is nothing more amazing than getting to watch and hear your heart beat...which is another reminder to thank God and praise Him for the gift of life. I got to see my new valve working in me, and it made me grateful to be alive.

After reviewing my echocardiogram, my new cardiologist came back with big smiles and was very pleased with what she was seeing. I believe the word was "WOOOOW..." The valve is holding up...relief! Tissue valves don't come with a guaranteed life span, so you never know! There is no narrowing or blood moving out to my lungs too fast (something like that, probably should have paid more attention...) No blood is sloshing back in, no more holes were found...sweet, sweet relief!

And to that, I give praise and glory to the One who breathed life in me 24 years ago and the one who will take it away on my last day. Dr Stevens and Dr Davis, NICE WORK!! I was a lucky girl to have you two for surgeons! And to Dr Bartlett and Sue Crimmins, I am grateful for both of you as well. Thank you for letting me be normal.

Thanksgiving

Approaching this special day, I have so much to be thankful for!


I am so blessed for my health, as it is the first time ever I've had a heart that works this efficiently. Lord, may I never take Your blessing for granted and all the praise, glory, and honor goes to YOU and none other! May I never forget this time of my life!!

Looking back at the journey leaves me flabbergasted!!

The Lord Blessed Krista's Surgery Today

Hi...I just wanted to let everyone know that Krista's surgery today went flawlessly. The Lord definitely filled this place with His presence today. The whole procedure went perfect with no complications of any type. The Lord was without a doubt with every part of the surgery and we are so thankful!!! Krista has been in recovery for the last two hours and has been doing very well. She must be feeling pretty good because she has been cracking some pretty sweet one liners over the last hour or so. They plan on having her in the ICU over night and then to a regular room in the morning to start the healing process.

Thank you again each and everyone of you for your prayers as they definitely were a blessing on this whole process. All the praise, all the honor, and all the praise goes to God on this day!!!!

Please continue to pray for a speedy and healthy recovery process as we move forward. God Bless!

Her Loving Bro,

Kyle

The Scoop

June 2

This business gets started around 10 o'clock.

1 hour to get on the heart and lung machine.

1 hour for the actual valve replacement

1 hour to get me off the heart and lung machine

They'll get me breathing on my own ASAP

And then I spend the day & night in ICU

Pray that I don't get infection with all this nasty MRSA and staff infection. If I got that in my heart, it would for sure kill me due to a weak heart being vulnerable.

What's going on...

I hadn't ever thought of doing this, but my dear friend suggested I do to keep people updated on my heart and my health. I wasn't quite sure what to think of this...but if I can let God's light shine through my pain and uncertainty, then praise be to Him! This is all a bit overwhelming for me, so I'm not really suppose to be talking about it.

So I would like to say a huge thank you to all my family (immediate and extended), my friends, my family's friends, and people who don't know me but have been faithful prayer warriors through this journey. I am overwhelmed with the amount of support you've poured on me, especially from people I least expect it from. I can tell you all are praying because I have a peace that surpasses all understanding (which is much needed, due to the fact I'm narrowing in on my final weeks at Central).

-Today my friend Lauren (I love you!) and I were having a long talk and the topic of why things happen came up. And this reminded me that this is NOT about me, about my parents, or my family at all. When I was fourteen months old, I went through a very intense open heart surgery to repair a hole in my septum wall, among other things that come along with tetralogy of Fallot, which causes Blue Baby Syndrome. As hard it was on my family, I am reminded how God took something so ugly and turned it into something so beautiful. I have heard a few times, from my awesome mother, about how the nurses would come up to her and my dad and tell them that they were praying for me, even if they didn't believe in God, because they saw something different in them...I wonder how many lives God was able to save, to touch, caused to question God's existence....this is where my main source of comfort rests. God can use something so...painful... at the age of 22, and use it to bring glory to him all over again so people can see the hope my family has had throughout the years. Yes, life would have been easier for my parents if they had had a healthy baby girl, but God has His hand in my life and I can see His fingerprints all over it. I trust He knows what He's doing by allowing this to happen. I hope to be like Job and be faithful to my God, keeping my integrity, no matter what I lose or how much pain I have to go through.

So, as far as updates...I had an appointment last fall that indicated there was swelling in my heart, due to my narrowed right ventricle which was made larger when I was a baby. Since they had to make it bigger, it made my valve flaps barely come together and now there is space in between them, so my heart is having trouble pumping out blood to the rest of my body. I have been through the whole panic before, and it turned out to be nothing. Unless the ECHO (which is like a sonogram for pregnant ladies, where you can see images of your heart, pretty awesome watching it beat) is measured in the exact same spot as it was previously, it has been known to be inaccurate. This time was different. In March, I went to have an MRA (like an MRI) done (much more accurate) which confirmed the right side of my heart has gotten huge from a leaking valve and would need to be replaced. Nine cardiologists met together and "are pushing for surgery" so surgery it is. They said my heart wouldn't ever necessarily return to normal size but they could get it pretty close. I don't get what took them so long to see the change...but whatever.

On May 14, I will meet my surgical staff- surgeons, nurses, anesthesiologist etc. The whole team. I have been blessed as I received word that I was assigned the top surgeon in the hospital, without even asking. God is good! Pray that I have peace during this day. Going to the hospital can cause a lot of anxiety for me...especially because this is becoming more and more real to me, knowing that in just a month (or, then, it will be 2 weeks), this is really going to take place.

June 1, I will be the hospital for three hours, getting ready for the big day. I will have blood taken and all that jazz, I don't remember all what she said will be going on but hey- details, details...

June 2, I have to be there for surgery prep by 6 am. I believe my surgery is at 10 AM...but don't take my word on that... I'm not sure how long the surgery will be, I'll have to make sure to ask them. I will be in ICU all day and night following surgery, and hopefully everyone can go home and get a good night's rest. They said I will be in the hospital a good four or five days, so come see me. :) I might be at my worst but it is great to know I have people who love me and support me and are praying for me.

I would tell my parents to update this so you all know I made it through surgery fine, for my friends who are unable to call but are still worried, but I don't know how that is going to be possible unless my dad or brother happens to bring their laptop to the hospital and they have internet...so, to people who know my outcome, feel free to leave comments so people that I am okay. I'm not too worried about me making it through this surgery! There is only a one percent mortality rate- so if my odds were that bad, then it would be blatantly obvious that God was calling me home...and then, I could see my Memmers (Grandma Wright) again, who I miss DEARLY, so it's a win-win for me!

Mom and Dad, I love you two insanely! Thank you for being my never ending support system and being my soft place to land when I get scared. I wouldn't want any other people to call mom and dad besides you two! Don't worry Daddy Allen, I have an "awesome" dad too. :) Love you- let's get those over with so I can get out on that lake and get a nice tan!

If any of you are interested on keepinig tabs on the healthy Fleen child, he has an awesome blog about how God has blessed him in his running- duathlons, triathlons, etc.