I have a terminal illness. The Make a Wish Foundation even granted a wish for me, to enrich my life with hope and strength.
I am still well alive, further along then medical science originally thought possible, but kept alive by breaking achievements in the medical field of technology. I pledge my full support to experimental procedures, and look? I'm one of the few to actually survive to adulthood with something that should kill you before the age of eight.
Today, I am respected volunteer Sysop aka administrator for AboutUs (this site) and now a renowned wiki expert! I run a successful blog over at rawr.mp/blog and had made myself a community champion for chi.mp due to my determination and help. I am a simple twenty year old that is proud.
I am Nick Burrus, and this is my story of my last open heart surgery which I was nineteen years old at the time. This was my third open heart.
edit Full Description :3
Wow. I cannot believe it has nearly been an entire year since I had my third open heart surgery. Let me give a crash course of how it went. ^^.
Well. I went in for a cardiac catheterization. I woke up in the middle of it in pain. I was given a mild sedative due to I was actually really freaked out about a giant hole in my groin. xD. I wanted to sleep through it, so they let me. I lost feeling in my right leg, of which they did the catheterization. So they quickly finished up, and the nurse helped calm me and talked to me the rest of the procedure.
The discharged papers got signed, and I was to go home. But as soon as I got up I collapsed and my face turned ghostly white according to the nurse. Even though it was a side effect he ordered that I stay overnight and they got me a room all to myself. .
The next day, a group of doctors came in to talk to me and my mom and my dad. I was nineteen at the time, but my parents still came. . The results of the catheterization came in and they determined they needed to do an emergency surgery. They said if they waited a month I would've been dead. They also looked into my Kawasaki Disease, as they thought there was a possible relapse. (Which is even rarer because I have no Asian ancestry, I am Caucasian)
They decided they'd start the medications that night for my surgery. They called the surgeon in who would be performing it, Edwin Petrossian. He is the medical director of cardiovascular surgery at Children's Hospital, and he is a professor with Stanford University. He is most known for his expertise and interest in complex pediatric and congenital cardiovascular surgical repairs. He also often times guest teaches at the University of California, San Francisco.
All the doctors I had were some of the world's most renowned heart cardiologists and people certified in the fields. Many work with the University of California, San Francisco, Los Angeles or Stanford. My main cardiologist was actually named doctor of the year. Many of my doctors have a very special interest in my case because it was highly unusual, and anyone who has ever gotten anything similar to what I had actually has passed away before surgery can be done. I am the longest living survivor, and my congenital defect has no known name.
The surgeon, Edwin Petrossian explained to me in detail exactly what he plans to do. They decided they were going to use an experimental technique to attempt to use donor tissue to repair the valve, and cut my left ventricle in half by patching up half of it to be unused, because it had expanded far too much. If the repairs did not hold, they gave me options:
1) Mechanical valve. 2) Tissue valve. 3) Take my pulmonary valve and replace it with the aortic and bring in a tissue pulmonary.
He explained which each would have best effect for lifestyles. For example #3 was best for people that are very athletic. I was a best candidate for a mechanical valve. My parents argued over which was the best, but I choose mechanical valve myself because I had researched and talked to my doctors about their recommendations. The catheterization proved that my aortic valve was not shutting at all and that my left ventricle has grown too big to weaken the heart.
This surgery was supposed to be from five to six hours. The surgeon promised to clean up my old scar and to use new scaring techniques that just started getting used within a few months before my surgery. I died during the cracking of the chest cavity. I was dead for over a minute, and was successfully resuscitated. The doctors were afraid I would've received brain damage.
The old scar tissue from my previous surgeries attached itself to my heart and to my chest cavity. They couldn't see the scar tissue on xrays, and it was very unusual for them. My innominate vein ripped in half, as so did my aortic valve. They repaired the innominate vein using the experimental tissue procedures, and it held. But when they went to repair the aortic valve the damage was too great. They attempted but it fell apart quickly.
They replaced the valve with a mechanical valve from St. Jude Medical Research, and used tissue to close a part of the left ventricle. Afterwords, the doctor did what he promised and took the time to clean up the scars from the last surgeries (they've gotten hideous and took up a lot of my chest).
I was surprised he actually took the time to clean up the scars, as well, I had complications. The surgery that was to be 5-6 hours ended up 15-16 hours. I had a lot of complications after the surgery as well. They couldn't wake me up when they first tried to. My body wouldn't breathe for itself, and they felt the machine has done it too long. My body was extremely swelled up as well.
Within a few days, I started to breathe on my own again. About a breath per minute. My family was there from all over to be by my side, as nobody knew what the outcome was going to be. Did I have brain damage? Will I make it? Not even the doctors were sure. The surgeon, according to the nurse, did not go home for a week. He performed another surgery that week, but spent most of his time overseeing the team of nurses and doctors that had to attend to me. My lungs collapsed on the third day I believe. They were not fully drained yet, or working yet, but it did not help that they collapsed. I started coughing up blood. This freaked them out even further.
They even had a respiratory systems doctor at my side for nearly a few days straight, nearly nonstop. I had full time nurses at my side. There was not a moment where I did not have nurse overlooking me. Any time one left, another one came in. Even for lunch breaks or bathroom breaks. The doctors were always on call and checked in multiple times during the day and night.
When I regain consciousness, I realized I had lost the ability to speak. As much as I tried I couldn't speak. The nurses and doctors quickly realized I had regained consciousness, as the machines told them. They gave me a pen and paper to write on. I was able to write my questions. My doctor, the surgeon, Dr. Petrossian came in and told my family in front of me to not lie to me. He said lying made everything worse.
First thing I wrote was that I couldn't speak. The nurse quickly explained why. My lungs and throat were not cleared out yet. I then asked if I got a mechanical valve or not. My parents hesitated to answer the question. But, wow, it took FOREVER to write such simple questions.
Stuff kept coming up out of my mouth. And I kept feeling like I was choking, was either hold onto it, spit it into my eyes, or swallow it. So I kept asking for it to be suctioned out. The nurse said I was suctioning way too often. The doctor said just hand me the freaken suction thing and let me do it myself. It amazed them that I gagged myself because I can feel where the stuff was stuck and bothered me so much.
This one nurse...who looks a lot like my favorite was not my full time nurse, but took over when the full time one left, or when she needed help. This nurse came up with an idea to help clear my throat. As I kept grabbing the suction. xD. She got a really really small tube to add onto it. And she pushed it down my throat. This caused me to throw up all over the bedding and the floor. The nurse was freaked out because it was really bright red. They cleaned it up fast and she removed the tube. I still had my suction thing. xD. When I saw that nurse again I thanked her, because of this I was suctioning less, and I was able to speak very lightly. The doctor later said it caused my body to push out most of the stuff, which was actually really, really good for my lungs for some reason.
Well. A lot more stuff happened but none of it was really critical. My blood work was highly unstable for the entire month I stayed in the hospital. I know a month. ><'. Nearly a year later, it is still unstable, but doing much better. My heart is showing signs of recovery, and they're glad about it. ^_^.
I lost twenty pounds in the surgery, and I am officially underweight. I still need to gain weight, even a year later. Trying to gain weight is harder then it looks!
I did upload some photos to my photo album. :]. Feel free to show them to people you know that may undergo a heart surgery, or curious of direct after effects looks. ^^. http://rawr.mp/albums/4827 :]
edit Original Stuff Follows
On Monday, August 11. 2008 I, Nick Burrus was admitted to the hospital for a cardiac catheterization to take place around nine to ten in the morning. Here is a wiki page at the one and only AboutUs.org about this time!
edit 15 May, 2009
Word of transplant is still undecided. But, according to a kind nurse who called about my blood work, my blood is on a rampage again. My number that was supposed to be 30 hit 19. My INR needs to be 2.5 through 3.0 and it dropped from the regular 2.6 as it was for the last two months down to 1.7
edit Updates as of November 2008
My blood is back on a rampage. The doctor hasn't said transplant is out of options yet. Actually transplant is getting more likely if my blood cannot get under control. On the upside...the valve is working perfectly but my heart is showing slow signs of recovery but it is enough for now.
i has good news! I was discharged today for a test period. If my blood levels continue to stabilize I can stay with my mom. If not I'm being readmitted. So for now, I'm home for a few days with my mom, but not my apartment just yet. =D
edit Heart Transplant
I found out that a heart transplant is still an option. If my health doesn't improve within three months; mainly the left side of my heart to a near normal state I won't be able to survive much longer; hence I'd be put on the donor list, in need of a heart. Mechanical Heart possibility? Damn FDA, allow them!
I went in the hospital around 6:50 am on August 11. Soon after I had x-rays taken and I was admitted to the day surgery. The nurse whom stuck with me the entire day, put a smile on my face was Susan Patterson. As my family and friend left the room while she applied numbing to my groin cream she said a prayer.
I later asked about her mission, she said she loved it. And loves working as an RN watching miracles happen. I later asked if she was always a part of this hospital before the move because of my curiosity and she was. :]. This hospital has grown from a tiny building to being one of the nations largest and most respected in childrens care.
She took me to a new room, where they did the surgery and introduced me to another RN/Nurse. This time it was a guy, Steve Frisby. She left the area while he applied the soap and removed the numbing cream from my groin. The soap was to antibacterial the skin. I felt more comfortable with a male doing the wider portion of the groin area. :]. He inserted the IV as well.
The cath went well, I fell asleep after I drunk an icky tasting orange liquid. It was for the pain. I woke up when there was roughly an hour left of the cath. The nurse Susan Patterson started talking to me asking how I'm doing, answering my questions, etc. I told her my foot was in pain the doctor relieved some pressure off of it.
Soon it was done and I was taken to Recovery where the nurse Chona Causing took watch over me for about an hour nonstop and talked to me constantly to make sure my pain and pressure feelings and body did not change or get worse.
edit Surgery Done
Updated by my mom until, I can type well again" "This is a update from Theresa Nicholas Mom. Nicholas has gone through a 15 hour surgery and had some complications during the first 30 minutes of his surgery they blew the aorta valve and could not save it, so due to that they had to put in a mechanical aorta valve which we were not hoping for, we really wanted to be able to save his valve. After blowing the aorta valve they blew a main artery so they had to repair it, and add 4 units of blood. Today August 16 they had to put him on a bi pap machine because he was not breathing deep enough on his own, and they are adding 2 units of blood today, his blood pressure is been high on and off today, so we have been letting him get a lot of rest which he really needs. So please just keep our little Nicholas in your thoughts and prayers. I know he will make it through everything because he is such a strong boy. Thank you all for loving and and caring for Nicholas he is such a wonderful boy!
edit Other People I liked
- Care Tech Amy and Judith in the Explorer Starship Wing.
- Nurses Rachel, Darcey (day surgery) and Cheryl Edwards.
- Steve Frisby, RN
- Susan Patterson, RN
- Pa Choug, RN Explorer Unit
- Rachel, RN from Explorer Unit
- Roni, PCIU
- Tanya(spelling?) PCIU
- Gina PCIU, both of them. :]
- Annette, PCIU
- Charge nurse the sate of 20-21 august, and my night nurse the night before.
edit Open Heart!
According to the surgeon there is a newer procedure he'd be doing which would be to repair the valve chamber which is a 50 / 50 chance of working. Since I had surgery in the past dead transplant tissue will be used and scar tissue removed.
Surgery can be from 6-12 hours, maybe longer.
According to the surgeon I have three options if the repair fails.:
- Mechanical valve. The valve will be from this company.
- Biological Valve.
- Ross Procedure (sp?) Pulmonary switch; pulmonary valve moved to aortic valve, aortic removed and new pulmonary put in.
- 1-3% chance of death.
- Chance of weaker heart
- Chance of surgery redone.
If the mechanical valve is done, I will have to get a blood test done twice a week for the rest of my life.
If something happens my family may update this page to announce the death (which is likely not to happen). They may forget, if I'm not online in a few weeks, something is wrong. :].
If a nurse or staff member wants their picture removed then it will be. This is a log for NickBurrus and I asked to take the pictures with the nurses, consider this a digital personal diary.
- *Chris was released early by two weeks by Judge Loza for my surgery.
- Feel free to add your note below. :]. Do not remove others please. Your name and date would be nice as well. :]. AboutUs requires a logged in account to edit pages so an account was created for ease. :]. Updated Note: The account below has been locked/deactivated ; please do not try to log on. This page is now locked to non administration level editing. If you wish to leave a comment or note to Nick Burrus or family go to User Talk:NickBurrus; thanks for your support through this difficult time!
- Password: 2008
- Please do not spam the page, I do not want the other AboutUs staff to lock the account down. Please sign your name. :]
- Nick! It's been a long time, school years ago. It was nice seeing you again the other day, and I hope everything is going well for you. Good luck on everything! Justin Doyer 8:10PM, Sept. 8th
- Hi Nick, Thanks for being a part of our lives and sharing your experience with us, your journey is inspirational. You are often in my thoughts and prayers. - Brandon CS Sanders 16:32, 12 August 2008 (PDT)
- Nick we wish you good health and a speedy recovery. You've been a pleasure to work with and thanks for sharing your enthusiasm with us. - AboutUs Lahore Team.
- It looks like you are in good hands, thanks for letting us all know how you're doing and all the best - Ray
- speedy recovery! Hope you recover quickly & fully from surgery! Julia 15:27, 12 August 2008 (PDT)
- Ok Nick here I am thanks to Brad's help and your link:). Wow it is hard to believe that you are having your surgery as I am typing this. I can't get you off of my mind. I have prayed that this will be your last surgery and that you be stronger than ever to do all the wonderful things in life that interest you. You have touched so many lives with your spirit and I am glad we have become close friends. Blessings to you, Chris, your mom, Vincent and Daniel. Talk to you soon, Cami Cassaday
- Rawr! Love, Kristina (contact me) 22:32, 13 August 2008 (PDT)
- Hey Nick, I pray that you recover fast, and have a good life and AfterLife. Remain optimistic and hopeful! Umar Sheikh
- Thank you so much for the update, Theresa. All of us at AboutUs have been hoping for the best for Nick. He is a wonderful young man and we want all the best for him! Much love to him and his family and friends, TedErnst (talk) 07:43, 17 August 2008 (PDT)
- We are praying for Nicholas and his family. Hope to talk to you soon Nick! I hope you recover fast. But do as the doctors tell you to; taking rest and all; all the best to him and his family to bear this with so much courage and hope. Umar Sheikh
- Hey Nick, it's me Aunt Mary. When we left yesterday Dan, Derek and I said goodbye you nodded so we thought you must of heard us. Your incredible strength is amazing to us, your positive outlook on life and your quest for knowledge is awesome (even if you do talk our ears off).
- We will be back on Friday, be ready to talk World of Warcraft tactics. Dan and Derek couldn't stand your being so quiet. It really didn't surprise anyone your first questions were about the type of surgery you had and then you wrote Chris a note "When can I eat and Drink" the Nick we all love. You stay strong as you have inspired many and will continue to do so for years and years to come. We Love you... -- Aunt Mary
- Give your Dad, Grandma and mom a big hug and kick your brother Chris if you can reach.. ok give him a hug too ..kick little James instead :O ..
- Get well soon. -- Saad
- My strong Son Nicholas your Mom is so proud of you. You have grown into such a wonderful young man thats has gone through so much and still always stays so strong with a positive attitude. I hope that you start feeling better really soon, you have been through a lot in the last week. Always remember your Mom loves you so much!!!!
- 8-25-08 - Hey Nick Aunt Mary again, it was good to see your smile and hear your laughter. I am glad we made the trip back up this past weekend. Now eat your food, drink drink drink!!! Get stronger and stop giving grandma such a hard time (LOL). Really you looked so much better this week, I know you have a long recovery in front of you but with your great attitude and if you listen to grandma and eat/drink you will be back up and online in no time. WE LOVE YOU !!!!! p.s. those nurses can't give you sponge baths forever.
- 09/03/08 Hi Nick it was really great to talk to you Gosh you are so grown up I know you will be up and better in no time Nick you are a very special person who has went through a lot in the past I am praying for you to recover soon so you can get on with all your dreams You are a wonderful person Get well soon and eat and drink and have a speedy recovery and maybe your mom can bring you out to Texas and we can all go to Schliterbahn together and ride all the water slides my treat,, Take care Nick we love you. Tracey and John Stanko Chris David and Steven we will talk soon get lots of rest....
- Hi Nick, it's Vartan. I sure hope you'll be a-okay. No, wait - I'm sure you'll be. :)