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!
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