The month of June has come and gone, and from my perspective it was extremely productive. I had my one month check up this last Wednesday up in Madison, which was my last meeting with Dr. DeOliveira. From now on, I am free from meeting with a surgeon until this valve calcifies, which we are expecting to be anywhere from 10-15 years from now. But who wants to think that far down the road anyway. Who knows what kind of operation I will actually have then.
The weather has been beautiful here in Rockford and I have taken advantage of it. Yesterday was my 1 month anniversary of my surgery and I spent it going to the pool. The scar is healing a lot quicker than what I thought it would, but my surgeon reminded me that the scar is just like new baby's skin so it can burn incredibly easy. No problems yet, SPF 30 seems to do the job. I had someone about my age to come up to me and comment that she had a scar just like mine. It's fun to meet others who have had the same thing!
When I first met Dr. DeOliveira for my initial appointment 1 year ago, one of the things I loved about him is that he always showed me pictures of what he does during surgery. He had always promised me that he would take pictures during my surgery. In my amazement, he printed out 3 great pictures of my diseased aortic valve and my brand new healthy bovine pericardial valve during my surgery. What a difference! I will try somehow to get the pictures on here, but as of right now I only have hard copies of them. A picture says a thousand words but these even go beyond that. What was happening with my own aortic valve was that it wasn't closing enough, as you can see in one of the pictures. The edges of the valve were very thick and looked like they didn't fit together. A normal, healthy valve should look like tissue paper - very thin with a perfect "Mercedes-Benz" logo that fits together without a gap. The edges of a healthy valve are extremely thin and flexible. My valve was "thick and floppy". His pictures of my valve will now be showcased in his lectures that he does for the medical school and from what he said, the "fish mouth" appearance is a classic textbook case of a bicuspid aortic valve. I hope these pictures can help some future doctors!
Although everything has gone very smooth so far, I did have some questions when I went for my appointment. If there has been one thing that I could complain about, it has been a skipping or the feeling of an extra beat every so often. I found out that these are called PAC's and PVC's, standing for pre-atrial contractions and pre-ventricular contractions. What I am feeling is a PAC, and it is nothing to be too alarmed about. The electrical activity at the top of my heart (the atrias) is still a little bit irritated from surgery, so there is an extra firing from a nerve coming from somewhere else that starts an extra heartbeat. It is of no worry to me since I feel fine and they said that it would go away with time. I guess it also helps to keep your potassium levels up.
I want to wish everyone a very happy 4th of July weekend! My biggest interests are in the food eating contests and fireworks. Hope everyone enjoys their weekend!!!
I can't believe it but today marks 3 weeks with my new bovine valve. So far, so good except I've noticed I have a new liking for cows. It was a little awkward on Father's day eating a steak since I have a new brotherhood with them. The cow jokes never get old for me.
Yesterday I went in for my first work out session at the rehab center and I loved it. There is definitely a positive, upbeat attitude in the room because everyone has the same goal in mind of getting their hearts back in shape. After getting hooked up to the monitor, I did 10 minutes on the treadmill and 10 minutes on the recumbent bike. There is a standardized scale that they use to gauge how hard the exercise is which they call the BORG scale. The ideal area of exercise is in the light to somewhat hard region, which I believe is 11-13 on the scale. After the bike I did some cool down laps and then about 10 minutes of stretching. I had a great time. Although most people don't see working out as a fun thing to do, this was definitely fun for me. My nurse was telling me that all of the other rehab patients were asking "what's with the young kid?" while I was working out which I got a good laugh out of. It was only my first day, I'm willing to bet I'll be sharing my story with everyone in there pretty soon.
As far as the rest of the recovery process, I am still hanging out in my recliner for most of the day. Luckily I have gotten plenty of good books from friends and family that help pass the time. The Seinfeld DVD's that I bought are coming in pretty handy too. I am still reluctant to sleep in my bed yet because my incision is still pretty sore. I just don't know if I would be able to shift my body weight enough to get in or out of bed. The good thing is that I have learned how to sleep really good in the recliner. Thanks to everyone who gave me the advice on the recliner vs. bed. If there's one thing this process of healing teaches, its patience. I have learned that the body does a good job at telling you if you are doing too much. The recovery process is extremely individual. When looking at the big picture, all that matters is that the progress is going in the right direction.
I am 2 weeks post-op today and I am feeling great so far. Today I went in for my initial assessment at the cardiac rehab center. I am very excited about starting this program. It is a really nice place with a lot of equipment and the staff seems so organized. I am in the 4:00 class that meets Monday, Wednesday, and Friday. I am told that this is the class for "younger" patients :). I am also meeting with a dietitian to control sodium intake and things like that. It is really cool to put down goals that I would like to accomplish both long term and short term. They will have me doing at least 45 minutes of cardiac exercise by the time I will be going back to school. That is very exciting to me! The cool thing is that I am hooked up to a heart monitor at all times so the nurses can see if my heart rate is too high or too low whenever I am working out. When I first mentioned that I wanted to do a cardiac rehab program to my doctor's a while back, they weren't too excited for me because they told me that I would be bored with it. The really cool thing about my program is that this is going to be specific to me and my age so that I will go at my pace and progress up to what I used to be able to. All of the staff told me that they have high expectations - I guess they want to get my butt back in to shape!
I do have one burning question for my fellow zipper chest friends on here - how long did you sleep in a recliner? I am 2 weeks post-op now and I am still a little stiff to get into bed. I am sleeping great on the recliner, but I was just wondering if I should move to a bed soon. Other than that, things are going great and I am continuing to make good progress!
Yesterday I had my one week check up with my surgeon in Madison. Seemed like such a distant memory walking into the hospital again. I still could not believe that I was done. I met with an NP who got my stitch out of my chest tube incision and also removed the steri strips on my 7 inch scar. I now have little horizontal steri strips holding my incision together, which is looking very good. I gained a little bit of a rash around the chest tube incision which is bothering me. They put me on bactrum for 7 days to clear it up. My bone seems to be healing well with no creaks or cracks. They keep reminding me although I may feel good, there's no mistaking that I still have a broken bone. It will take a full 12 weeks to heal the breastbone. Long way to go!
I've consistently been doing 5 minute walks throughout the day, and yesterday I even made it outside to walk in my driveway. Other than that, a lot of watching TV and movies to pass the time everyday. The low sodium diet is going very well so far. It really isn't that bad because I don't have that much of an appetite anyway. I have finally lost all of the fluid that I gained from my hospital stay thanks to the Lasix. Ended up being about 15 lbs of fluid!
I MADE IT!!!!! What an exhausting, frustrating, exciting, and thankful time this last week has been. I have felt sooooo many of everyone's prayers and I am confident that is what got me through the surgery. It feels great to be home. No more 4am wake up call from x-ray!!! The doctors at Madison are phenomenal. I guess I didn't realize how many residents I would be working with, but I was extremely interested in meeting all of them and hearing their stories. My room was nice and big, but being spoiled in this day in age with HD TV, the television could have been a little bigger :). I had the perfect amount of visitors. Wednesday was an extremely tough day for me so it was good that only my 2 brothers in town came up to see me. I can see progress with the walking which is really cool.
I am not going to lie, Tuesday night was hell. They kept bothering me to breathe on my own or the ventilator tube would not come out. All I wanted was more pain medication. I was very comfortable going into the surgery because I kind of had a peace of mind about pain control. I was way wrong when I woke up. They gave me oxycodone which did not work at all. They kept giving me that over and over again until I demanded something better. Finally, at 1:30 am the MD ordered Toradol which is an anti-inflammatory. That seemed to work a little bit, but the pain was aweful. Luckily, that is all behind me. I am still in considerable pain, but it is a little more tolerable. It really hurts to move my arms or back. I have gotten much better and getting up out of chairs, though. I just cannot wait until I will be done with the rehab for this. I want to get back to some basketball right now! :)
It is interesting to note my spurts of energy. They are few and far between, but I can see progress everyday which is really cool. I couldn't have done this without every single one of you. I had so many prayers coming from all corners of the nation (and Canada too!) that helped me through the first few nights. Until next time, thanks so much again! It feels great to be back.
We have just received word from the nurse that Trevor is going to be discharged today!! The doctor didn't make it in(most likely an emergency surgery) but he has reviewed Trevor's chart and says he is ready to go home. We have had a visit from the pharmacist; he has a long list of new meds for a while. We will be coming back up next week to see the surgeon. Trevor is tired this a.m. and I know that the trip home will be exhausting for him, but I am VERY upbeat and excited that we can bring Trevor home after only 3 days!! PTL!! His heart monitor is gone and now just an IV to come out and off we go!!! He is sitting up in the recliner in a pair of pjs - no more green gown!! He will take his first shower at home today. Thanks to everyone for your support and prayers this week. We couldn't have made it without you!
I was hoping to have Trevor write to you today, but he is VERY tired and isn't up to it. He did have a good night of sleep according the nurses. I went to the hotel for some much needed rest, so we both slept well! :) The doctor wants Trevor to walk the halls today 6 different times. He isn't thrilled about that but knows it is important. He is napping in the recliner on and off today. That is good...he needs it. He is still in considerable pain and needs pain meds as often as they are allowed He tried to eat some solid food today, but really has no appetite. We know that there will be up days and down days....think that yesterday was so full and busy that today is a bit of "pay back". He is receiving an IV with potassium. They weighed him last night - up 10 lbs since Tuesday before surgery. The doctor told Trevor that this is very typical. I am just sitting in the corner of his room today reading a book and letting him rest. Thanks for your continued prayers - we feel them.
As I look back to the beginning of this day (1:00 a.m. and on) I NEVER imagined that Trevor would be where he is now!! Trevor is basically "wire free" except for one IV where he is getting meds (Lasix). He has walked around the hallways 3 times today. Although he is tired and naps often, he is talking more and I can tell that his pain is much less because his mood is better. The doctor says that he will most likely be going home on Friday...that is my birthday!!! That will be the BEST present I could ever get from Trevor for my birthday! I am hoping that he will be comfortable enough tonight that I can actually go back to the hotel for some much needed sleep. My husband, Marsh, and I have been catching a few zzz'z when we can. Marsh has actually found a quiet dark family waiting room down the hall where he can sleep and he's taken advantage of that more than once. I am doing fine so far, but admit that the 15 minute naps here and there aren't enough. It has been an exhausting day for Trevor with all of the activity, but the rewards are paying off with his excellent progress. Thanks for the many prayers. God is holding us all close and giving us the strength that we need. Trevor will have a short visit from his brothers, Ellen & Jessica tonight. Trent & Martha are coming to Rockford this weekend; Trevor is so excited to see them. More tomorrow.
Trevor's chest tube was removed at 12:30 p.m. The nurses are all telling us that he is definitely on the fast track for post op recovery. He is staying strong and doing exactly what he is being told. Not too hungry yet...I suppose the chicken broth and apple juice isn't that appetizing anyway! Thanks for your prayers...God is so good.
Trevor had his first stroll down the hallway @ 10:15 a.m. He pushed a wheelchair that carried his chest tube "bubbler" and IV's. He is going to take another stroll by 12:30 and then his chest tube comes out. YEA! One by one he is losing all of his lines, tubes and machines. He is kind of irritable,(understand why!) but is cooperating because he knows that this is what will help him.Good job Trev!
Thought I would bring everyone up to date on Trevor. He had a rough night...pain meds not helping much. The nurse called the doctor at 1:30 a.m. to get orders for other meds. Trevor was put on an anti-inflammatory and another stronger pain med. The pain is most likely coming from his chest tube. The meds did put him to sleep for a few hours..I really don't have much of a sense of time anymore! Doctor came in at 6:00 a.m. and said Trevor is no longer considered an ICU patient. He will not be moved to a different room; the room moves around Trevor. Slowly tubes and lines will be removed. He got up in a chair at 8:00 a.m. Pretty hard, but the nurse keeps encouraging him that it will help him with his pain and his recovery. He ate a very light breakfast - jello, apple juice and LOTS of pills. He is bit "puffy" so started him on Lasix and Potassium in addition to other meds. Although he doesn't feel like it yet, he is on the road to recovery and we are SO thankful! We feel your prayers.
It is now 8:15 p.m. and I have a few moments to update all of our dear friends. I haven't left Trevor's side much since mid afternoon. The breathing tube finally came out at 6:00 p.m. Trevor was SO happy to say goodbye to that guy! His swan was also removed...a cath to the heart which monitors blood flow. The surgeon came in for a visit and said that everything is routine - that is good news. Trevor is sipping on ice chips He says that they taste like heaven to him! Trevor has also been receiving potassium through his IV. He started using his spirometer (I think that is what it is called!). This is hard for him, but the nurses are very impressed with his levels. Trevor is in some pain, but he is receiving as many pain meds as he is allowed. They are monitoring the dosage because they don't want him to get nauseous. Trevor has asked me to stay tonight with him in his ICU room. I am happy to stay - actually relieved that he wants me to because I want to stay. I will be "sleeping" on a recliner. We had a full house at the hospital today - it was wonderful to have such support from our family. In addition to our son, Tyler and Trevor's best buddy, Mike, Trevor's Grandma Johnson was here, Aunt Cindy, brother Troy and his wife Jessica and our adorable granddaughter, Madilyn, and Tyler's fiance, Ellen. What a blessing to have them here with us. Even though our son, Trent lives in Denver, he was here with us through many, many phone calls and text updates. It has been quite a day - a day of answered prayers. Please keep praying for Trevor's continued recovery and that everything will continue as routine - just like Dr. D said! Love you all. PTL!!
Hi Everyone. Trevor is still very sleepy...the ventilator won't come out until he is more awake. We have all taken turns going in to spend time with Trevor. Although he hasn't opened his eyes yet, he is able to understand what we are saying and what is going on by shaking yes or no or a thumbs up. He is now clutching the small guardian angel that his grandma gave him before surgery. God is good. Keep praying that everything continues to improve as the day goes along. We are so thankful for this journal to keep everyone updated. Your prayers are holding us up. More later.
He's in recovery. The doctor came in and praise God everything went as he expected! God is so faithful! He's sound asleep...and looks great! They're going to be taking out the ventilation tube soon, which Trev seemed to have a little anxiety about so keep praying! The rest of the tubes will come out throughout the afternoon...Sherry and Marshall are in there now with him.
It is 11:10 a.m. here and we have just heard that Trevor is off the by-pass machine. Everything is going well. I'll keep you all posted as I hear more. Keep praying!
It is 8:30 a.m. central time and we just received word that the surgery is underway and everything is going well. Trevor's strength and courage is an inspiration to us all. We feel all of the prayers - we appreciate them more than ever. I will update as I know more.
We have arrived at the hotel and the time is flying by. I had a speaker phone conversation with my senior pastor at my church which was great. The passage that God gave him to share with me is Psalm 121. I took my first dose of Allopurinol at 8 PM. Have to scrub up with the Hibiclens tonight still and I wanted to read a little before going to sleep. We will probably be rising at 4am and leaving at 5am tomorrow morning. I have one more dose of Allopurinol to take and then the heavy stuff starts coming. Had a great conversation with all of my family members over the phone. For now, this is me signing off. I hope to get back at this as soon as possible to update you all. So, I want to thank you all again and just tell you that I love everyone. Lets all keep praying hard and staying strong through this together!
I want to introduce myself to you. I'm Trevor's mom, Sherry, and I will be keeping you posted until Trevor is feeling up to journaling again. I want to thank you SO much for all of your kindness and prayers for Trevor. We all appreciate the support and encouragement. It has truly been a blessing to our family. Talk to you tomorrow.
I am still in Rockford right now doing some last minute preparation. The recliner is all set up, DVD player, Playstation, Wii, and plenty of books are set up so I should have plenty to do when I get home. I got a ton of new sweats to wear around the house when I get home too. In a few hours we will be leaving for Madison to stay at the hotel for the night. I have a 5:30 check in now for a 7 am start. The surgery is set to last until 1:10 PM. I am only able to bring one person back with me to my pre-op room, but they are making sure that I get to see all of my family and friends before I get wheeled back to the OR. I just finished up a great meal out with some great friends. Maybe I can fit in one more meal before I have to have a light supper :). No food after 6:30 PM tonight, but I can have clear liquids until midnight (like I'll be up that late ha!). I want to just continue to say a huge thank you for all of the support I have gained on this website. I started this journey feeling like I was one out of a million going through this but now I realize that there are so many of us out there. I have had a rollercoaster of emotions throughout the last 10 months, most of which were extremely unpredictable. As this date has been approaching fast, I just now am sick of dealing with fear and worry about the surgery. I am ready to just get this behind me and move on to my senior year of college.
One of the main questions that I have been getting recently has been "what do you think life will be like without this constant fear not in your mind anymore?" Honestly, I have had lots of time to think about that, and I am still speechless. I am so excited to get back to playing sports, traveling, and actually being able to concentrate on school work. My fatigue really hindered me in my clinical work these last 2 semesters, so hopefully I will gain full potential back after the operation.
One last trip to Target this afternoon and then we should be set to go. I am traveling up with my parents, Tyler, and Ellen and we are all staying at a hotel near the hospital tonight. I am bringing all of my DVD's, 4 books, some magazines, my iPod, a portable DVD player, some cards, and a whole lot of courage. Like in Adam's book, this is the biggest thing I am bringing with to the hospital. I will just be sitting back and being the patient.
My mom will be taking the ropes from here on giving updates....still have to teach her how to use this though. I will update once more when I get to Madison tonight. Again, thanks for all of the continued support. I do just have one huge favor to ask of everyone: keep praying hard these next few days! I will need it and I will be sensing all of your prayers.
Today marked 7 days left until I will be on the operating table. My PA told me to keep as busy as possible in the last 7 days until surgery. Taking his advice, I just got home from a great trip to see my Aunt Barb & Uncle Bruce in Ames, IA. We even got to go to a minor league Cubs game in Des Moines! While there, I got to meet my childhood hero, Ryne Sandberg :). On Thursday, I will be going to Wrigley Field to see the Cubs play the Dodgers. Hopefully I can fit a game of golf in this week too. Please keep praying that I will be able to stay calm as the date approaches.
We are entering the last week before the big day....deep breath. I had a very long but productive day at Madison last Wednesday. I started with getting a chest x-ray and some blood work, then headed up to the cardiothoracic offices. Dr. D was involved in an emergency lung transplant the night before (12 hour surgery!), so I had to put off my meeting with him until a little later that day. I started with the PA, which turned out to be the most beneficial meeting for me. He is a great guy who has been in pediatric CT surgery for 22 years. We talked very honestly about the surgery and basically went through admission to discharge. He was very interested in hearing my questions and offered a lot of advice to me. It was a very upbeat meeting in the sense that he sees me bouncing back fairly quick. I mentioned my concerns about my medications and he already had that figured out before I could ask. We are holding the lisinopril 7 days in advance along with the aspirin, and I have stopped taking my multivitamin already. He did prescribe a new medication for me to use the night before surgery and the morning of - Zyloprim 300 mg. I've never heard of this drug but they told me that it will promote healing by killing free radicals.
We then went on to discuss what actually is going to be happening during the surgery. They will start by putting as many lines in me as they can, which he explained takes about an hour to an hour and a half. This includes the central "swan" line that goes inside of my heart to monitor pressures on both sides, an arterial line in my wrist to monitor BP, catheter to monitor kidney function and body temp, a few IV lines, and ventilator to breath for me. Once that is complete, Dr. D will come in and start the surgery. He said that he is pretty close to 4-4.5 hours for an aortic valve replacement. The amount of time I will be on the heart-lung bypass machine will be anywhere from 30-60 minutes in that time. He reassured me that he has always been impressed with Dr. D's work and that he is a great surgeon. We ended our meeting with the presentation of the informed consent sheet. Even though it is just a sheet of paper with my signature on it, I viewed this as a pretty big step in going forward. I guess there is no turning back now!
I met with the Learning Resource Nurse after this to go over more questions and some basic care and nursing stuff. She also gave me the famous Hibiclens antibacterial soap to use the night before and the morning of surgery. I can only have my face shaved that morning - they'll do the rest. She also went over what to expect when I wake up in my recovery room. And, last but not least we went over the importance of coughing and deep breathing. I get burned out teaching patients in my own experience these techniques, but it is going to be important for me to do them. I will be given an incentive spirometer, which measures how much my lungs can expand. All post-op patients are extremely susceptible to pneumonia and blood clots, so keeping the lungs as active as possible is essential. Just give me the pain meds before!
Dr. DeOliveira came in after and went over some final things with me. He wanted to make sure that I was 100% with the biological valve still (which I am). Basically all of my questions had been answered by this point, but it was still nice to meet with him just to talk. As far as pain management, they will use IV pain meds at first until I am able to swallow liquids. They are going to probably use 2 different meds - morphine and Dilaudid to start, and then wean myself to pills. Dr. D also had a positive outlook for this operation because I am so young. This does help with the anxiety.
Last but not least, I met with one of the nurse practitioners on the anesthesiology team. I have heard by numerous people that a successful surgery is held together by a great anesthesiologist. She went over my medical history with me, and my past reactions to anesthesia, which were all great. They are going to give me a relaxant right away in the morning, but will wait to put me to sleep until I am on the operating table. They have a specific team of MD's that only work with open-heart surgeries, so hopefully I will be in good hands.
I did end up needing a cardiac CT scan, which I did locally here in Rockford. It was very quick, but very strange. I had an iodine dye injected in me which felt like fire going through my veins. It didn't hurt, it was just a really warm and weird feeling. So, everything is done now. I am all set. We are staying in Madison the night before because I have a 6 am check-in time for an 8 am start. Sorry for the long update but a lot as happened in a short period of time. Keep praying that I stay at peace with everything.
Tomorrow I go up to Madison for my pre-op testing and final meeting with Dr. DeOliveira. I have quite a few questions that I need answered. It is a bittersweet feeling being done with school for the year. I am happy that the semester is done and that finals went well, but now it is time to prepare for "the big day".
Within the last week, I was trying to think of everything I am looking forward to and not looking forward to regarding my surgery. I have others, but I decided I will post my "Top 10 List" for each.
I am NOT looking forward to:
10. Losing touch with my friends for a while.
9. No driving for 6 weeks.
8. No lifting. I will have great help around the house, but I will not be able to hold my niece Madilyn for a while :(.
7. No job. I am already on a college student budget, but the finances are really going to be hurting with no job this summer.
6. Catheter. I think that's self-explanatory.
5. Pacing myself in the recovery process. I am wanting so bad to get back into shape and get back to exercising, but I will have to follow the doctor's orders on that.
4. 10 inch scar for the rest of my life.
3. Sleepless nights and the feeling of helplessness in the first few weeks along with the pain.
2. Waking up to a ventilator in my throat and chest tubes sticking out of me.
1. Heart-lung machine. My body will have to be chilled down to a ridiculous temperature so that the heart will stop. This is just a scary thought.
I AM looking forward to:
10. Spending a lot of time with my family.
9. Finally being able to concentrate fully on school. It was very hard to concentrate on school work this past year.
8. Always having a conversation starter at the pool. It's not everyday you see a 22 year old with a 10 inch scar on their chest!
7. Enjoying the small things in life.
6. Shaping my career around this experience. I am expecting to learn a lot, whether good or bad, through this whole process. Hopefully I will apply it to my own nursing career.
5. Full body shave?
4. Being the center of attention for a while :)
3. Getting back to playing basketball, baseball, and skiing.
2. Being able to grow spiritually through this trial.
1. Having a second chance at life! I will be a totally new person!
Matthew 11:28-30 - "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light".
It has been a few weeks since I last posted, so I figured I should really write a new journal today since my surgery is just a few weeks away (and gives me a chance to take a break from studying). This week embarks upon the two words that any college student dreads: finals week! Maybe I should be exempt because I have enough to worry about? I think I've figured out that the clock inside my mind must be skipping some time or something - it's already May 10?! I will be done with school for the year on Thursday. I know that God's hands have been pushing me right along to make it through this semester.
Next Wednesday I will be going up for my pre-op tests in Madison. I am still not familiar with how I will be able to bank blood for myself, or if I even will be able to. I have a list of questions already for Dr. D and the anesthesiologist. I think my biggest concern is my blood pressure during the surgery. I have been on the largest dose (40 mg) of lisinopril (aka Zestril) ever since I was first diagnosed with a leaky valve. The reason for this is to allow my heart to relax as much as possible, especially during the diastole phase. It usually runs about 100/60. The last surgery I had (not heart related), my blood pressure dropped to a pretty dangerous level. I would think that I would hold this med - after all, my BP is within normal range without the medication.
My checklist has also started for things that I will need to bring to the hospital and also what I will need at home. Seinfeld DVD's are already checked off :). Any suggestions from my fellow heart valve friends would be greatly appreciated! I'd love to find out what your own checklist had or what you wish that you had. The first thing I lined up to have is a big comfy recliner to sleep in for the first few days. Other than that, I'm loading up my iPod with plenty of music to listen to. I also have quite a few books that could use some reading. My grandma and I decided that this gives us a good excuse to also play some board games this summer too!
I always like to post a verse that is relevant to strength and support, but this particular one is actually hung up right next to my door so that I read it every day before I leave for school.
Isaiah 41:10 - "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with My righteous right hand." What a motivating and promising text. Hope everyone has a great week! I will post soon again since the surgery date isn't too far away.
This week marks 6 weeks until my surgery. To be exact, today is 44 days away from the date. As usual, I am really enjoying this time of the year. Most of this is because there are so many great sporting events going on - NHL playoffs (Go Blackhawks!), NBA playoffs, The Masters, and of course there is baseball every day. Unfortunately, this week I was swamped with a massive amount of school work. On the bright side, this last week is over and it seems as though I am in the homestretch of my semester. This semester has been such a blur to me, but I was kind of expecting that. I juggled around the idea of taking a medical leave from this semester and having the operation in December, but I believe I made the right choice by staying in school. Although the health of my heart is more important to me than school right now, it would have set me back another year in class work.
I am so excited for this upcoming weekend because my brother Trent is flying in from Denver for the weekend. It has been since Christmas since he has been home, and because of doctor's orders, I haven't been able to go out there to visit him. I'm glad I will get to see him one last time before he sees me on the other side of the operation. He is coming back 1 week after my surgery to visit me, but I am pretty sure I will look like I am in a horror film then. I also have planned a trip to go out to Denver with my best friend in late July. This trip has also allowed me to look forward to something this summer, rather than just dwelling on recovering from my surgery. I will be in week 8 of recovery by then, so I will still be taking it easy on any physical exertion.
One month from tomorrow I will be going in for pre-op testing. I still have not heard back on whether I will be having a Cardiac CT scan or not.
Isaiah 40:31 - "But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
After a fun and relaxing Easter break home with the family, I am back to school. Hard to believe there are only 5 weeks left of school. I guess having 2 spring breaks kind of speeds up the semester a little bit. I can't complain, most schools don't get 2 breaks like us; I guess it's just another joy of going to a Christian institution.
I was pleasantly greeted by a large manila envelope with a return address of Dr. DeOliveira when I came home last week. Inside was a thick folder with a letter attached to the outside. On this professional stationary (I guess that's to expect with what we'll be paying for) read that I am officially scheduled for Tuesday, June 1st at the University of Wisconsin-Madison. Judging by how fast this year has gone already, I think it is safe to say that this is within arm's reach now.
Although I had an immediate sense of "butterflies" in my stomach, I was impressed by what was included in the folder. I was not expecting any sort of "guide" beforehand, so receiving this has helped tremendously. I was given specific instructions on what I need to do with my current medications, what tests I will be having beforehand, and a lineup of events that will be happening on my pre-op workup date. I am scheduled to go up for a marathon of tests and visits on May 19th. This will include (sorry if I get long winded) a chest x-ray, blood draws, a cardiac CT, a meeting with Dr. D's assistant, a meeting with the Learning Center, a meeting with an Anesthesiologist, and then a final meeting with Dr. D to go over some final plans on the operation.
Another kind of cool thing that they included was a post-op care plan. This went day by day on what to expect and what goals I should have. It includes quite a lengthy list, so I will save it for a later post. Lastly, within the folder was a booklet specifically made by UW titled "Preparing for Heart Surgery”. This 13-page text goes through start to finish regarding my hospital stay. It is a lot to handle, I must admit, but I am thankful that they sent me all of this information.
As a quick side note, I was very excited to see Aaron Boone (my personal hero through this whole thing) working with ESPN broadcasting baseball games. As some of you know, Aaron Boone is a former MLB player who grew up with the exact same condition as me and had his bicuspid aortic valve replaced last year on March 26th. He has been and continues to be a huge inspiration in my life. Boone thought that his season, and possibly his career were over, but he surprised everyone by coming back to the game of baseball in just 5 months when he joined the Houston Astros in September. He retired at the end of the year, but it is great to see him on TV again. He has quite the inspirational story and it is my dream to be able to get in contact with him before my surgery.
I hope everyone had a blessed Easter!
Isaiah 58:8- "God will shed His own glorious light upon you...your godliness will lead you forward, goodness will be a shield before you, and the glory of the Lord will protect you".
I am enjoying every part of my spring break so far here in Rockford. No trip this year for me, just rest and relaxation at home. If I had a choice, I would probably be skiing in Colorado or maybe even a trip to Disney World in Orlando, but traveling doesn't exactly agree with a college student's budget. Staying home also gives me a great opportunity to reflect on my upcoming thoughts about my fast approaching surgery. On Monday (which happened to be the Ides of March) I had a check up with my cardiologist here in Rockford. I had posted previously that I wanted to bring up the possibility of a referral to Mayo Clinic. I have been seriously considering the possibility of the Ross Procedure for the past month. My dad and I honestly explained to my doctor that I am not doubting the ability of my surgeon right now, but that it would give me some peace of mind to get some re-enforcement on why I shouldn't have the Ross performed. My physician expressed his thoughts on a second opinion, and most were negative. My initial reaction was disappointment. Just another emotion to add to the medley of feelings with this whole adventure.
Some thoughts that Dr. De Oliveira, my surgeon, had brought up in our first meeting have come back to me since. He studied under Dr. David, a world renowned surgeon from Toronto that performed a study on patients with BAVD, which is me, and the success rate of the Ross Procedure in patients with dilated ascending aorta, which is me. What he found is that it is a more difficult operation to perform when the patient has even a little bit of dilation in the AA. It is difficult to predict whether the aorta will continue to dilate or not.
The reason why I remembered this was because I took advantage of using the Cleveland Clinic website as a resource. To my luck I was able to speak with a nurse of Dr. Gosta Pettersson's. He is a specialist in congenital adult valve disease, and he has written that he will only perform a Ross if there is little or no dilation in the AA, which is a common feature with BAVD. Having heard this really has made me more comfortable and I am still leaning towards getting a bovine pericardial valve.
Just 11 weeks to go. I have started telling more people that I will be having this surgery, which is setting in the reality a little more to me. The tough part about it is that the majority of people who have known me have never known that I have a heart condition. Some great reactions I have gotten from friends so far are "is that dangerous?", "are you gonna be ok?", and the blank stare with raised eyebrows.
Only 8 weeks left of school, but I have something more exciting on my mind right now. Baseball season has started, March madness has started, and NHL playoffs are fast approaching. Gotta cheer on my Golden Eagles of Marquette tomorrow at 6:20 CT playing Washington. I like our chances with how much heart they have played with all season. I'll keep updating on occasion, and I'll start trying to make these posts shorter. Even though I don't post everyday, it is part of my daily routine to come on here and read journal updates from everyone. You are all in my thoughts and prayers and are offering me so much advice for me.
Proverbs 3:5-6 - "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."
First of all, I just want to thank Adam Pick for creating this website - never had I imagined reading and learning about so many valve cases. I had always had the impression that I was just going to be able to talk with my family and my physician's about my case. It is great to read the success stories, it really helps with keeping up the inspiration. A big thank you to everyone who has "signed" my guestbook, too. It really does mean a lot to me and I really appreciate it.
Like I had stated before, I was under the care of a pediatric cardiologist up until the age of 18. To this day, I still believe he is one of the most caring, thorough physician's around. He ended up moving to Arizona right when I turned 18, which was the same time we decided I should think about getting an adult cardiologist. Dr. Hecht, my pediatric doctor, always had told me that I would be having a revolutionary valve surgery for young patients which is called the Ross Procedure. What happens in this procedure is a "musical chairs" of my own heart valves. The bicuspid aortic valve is discarded and replaced with the healthy pulmonary valve, and then the now unoccupied pulmonary side is replaced with a donor heart valve. I was told this is a great choice for young patients because of utilizing a healthy auto-graft valve, which could grow with the accommodating changes of size within the aorta. This is also very attractive because most likely I would not have to use Coumadin for the rest of my life. Being so young, the whole Coumadin thing is not very enticing - that's a lot of years on a blood thinner and a ton of INR check-ups at the lab.
I still have quite a bit of time until my surgery, although I keep thinking to myself it is just around the corner. Part of that might be I am just anxious for baseball season to start and having warmer weather. I just thought of an idea this past week about maybe getting a second opinion from another cardiothoracic surgeon to make sure on what operation I should get. As of right now, I am leaning towards getting the bovine pericardial biological valve. I understand that these do not last as long, but it seems like it fits my lifestyle the best. My next appointment with my cardiologist here in Rockford is in March - I am going to mention the possibility of going up to Mayo Clinic in Rochester, Minn. just to talk with a surgeon about my case. Through research, it looks like Cleveland Clinic and Mayo are really the top echelon of heart valve cases in the nation. I think I will feel more comfortable if I do this. I might still be in that awkward stage of being between the care of a pediatric and adult cardiologist, which is probably making the decision of Ross vs. Bovine a little tougher. I guess I am just wondering if this is a common thing for people to get a second opinion on which operation to get.
As for the rest of life, I am into the full swing of Spring semester and at another rotation for clinicals. I really don't have much tolerance for exercise anymore - if I do exert myself too much, my body tells me I need a nap. I am really looking forward to the day I can play basketball with my friends again. Every day is a gift from God, and I try to make the most of it. I think my current cardiologist, Dr. Kotis, said it best, "We cannot change the cards we are dealt, just how we play the hand." Universally, I think that is a fantastic philosophy that we could all live by.
Psalm 28:7 - "The Lord is my strength and my shield; my heart trusts in Him and I am helped. My heart leaps for joy and I will give thanks to Him in song."
My name is Trevor Nelson and I am a 22 year old college student currently at Concordia University Wisconsin. I was born and raised in Rockford, Illinois, which is about 90 miles west of Chicago. I am the youngest son of my parents, Marshall and Sherry. I have 3 older brothers: Troy(31) who is married to Jessica, Tyler(29) who will be getting married in September to Ellen, and Trent(26).
I am an avid sports fan, especially college basketball and Major League Baseball. I also enjoy skiing and hiking, and thankfully I have a brother (Trent) that lives in Denver, CO so I get to go pretty often. My other hobbies include golf, following Chicago sports teams, traveling with my family, and attending concerts.
At the age of 12 going into a routine sports physical, my primary care doctor discovered a heart murmur that he had never heard before, so he wanted to obtain further testing. After an echocardiogram, it was discovered that I had a mild leak in my aortic valve and that I was born with this condition. I had no restrictions and no symptoms, so this news was very frightening to me. My cardiologist said that this was no immediate concern, but I may need surgery to correct the condition later on in life. I continued to participate in sports, primarily basketball and baseball without symptoms for the next 8 years.
I started noticing a slight difference in my stamina while exercising in my Sophomore year of college at the age of 20. I was running, lifting weights, and playing pick-up style basketball 3 or 4 days a week. After having yearly echocardiograms since I was 12, my cardiologist decided it was a good idea for me to meet with a surgeon in July of 2009 just to get familiar with the logistics on the operation and possibly set a schedule. The leak in my aortic valve had worsened to a moderate/severe level. My cardiologist also decided that I had a bicuspid valve (two functional leaflets) until proven otherwise in surgery. I was referred to the University of Wisconsin at Madison Hospital, where I have set a preliminary schedule for my aortic valve to be replaced in early June of 2010. I feel very comfortable under the care of my surgeon, Dr. Nilto De Oliveira, and the rest of his cardiothoracic team at UW-Madison. Over the last year I have had an increase of symptoms, most notably shortness of breath. My heart has increased in size, but my physicians assure me that the size will go back to normal after the valve replacement because the strength of my heart is still great.
Through my faith in my Lord and Savior, I have embraced my condition as an opportunity to make my self a stronger person, not only physically but mentally as well. With doing the research on my condition, I gained a passion for the field of medicine and helping others. I am currently a Nursing student in college and hope to go into the field of cardiology someday. I hope to learn as much as I can through this website and Adam's book in preparation for my surgery and look forward to getting my endurance back and returning to the ski hill!
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The weather has been beautiful here in Rockford and I have taken advantage of it. Yesterday was my 1 month anniversary of my surgery and I spent it going to the pool. The scar is healing a lot quicker than what I thought it would, but my surgeon reminded me that the scar is just like new baby's skin so it can burn incredibly easy. No problems yet, SPF 30 seems to do the job. I had someone about my age to come up to me and comment that she had a scar just like mine. It's fun to meet others who have had the same thing!
When I first met Dr. DeOliveira for my initial appointment 1 year ago, one of the things I loved about him is that he always showed me pictures of what he does during surgery. He had always promised me that he would take pictures during my surgery. In my amazement, he printed out 3 great pictures of my diseased aortic valve and my brand new healthy bovine pericardial valve during my surgery. What a difference! I will try somehow to get the pictures on here, but as of right now I only have hard copies of them. A picture says a thousand words but these even go beyond that. What was happening with my own aortic valve was that it wasn't closing enough, as you can see in one of the pictures. The edges of the valve were very thick and looked like they didn't fit together. A normal, healthy valve should look like tissue paper - very thin with a perfect "Mercedes-Benz" logo that fits together without a gap. The edges of a healthy valve are extremely thin and flexible. My valve was "thick and floppy". His pictures of my valve will now be showcased in his lectures that he does for the medical school and from what he said, the "fish mouth" appearance is a classic textbook case of a bicuspid aortic valve. I hope these pictures can help some future doctors!
Although everything has gone very smooth so far, I did have some questions when I went for my appointment. If there has been one thing that I could complain about, it has been a skipping or the feeling of an extra beat every so often. I found out that these are called PAC's and PVC's, standing for pre-atrial contractions and pre-ventricular contractions. What I am feeling is a PAC, and it is nothing to be too alarmed about. The electrical activity at the top of my heart (the atrias) is still a little bit irritated from surgery, so there is an extra firing from a nerve coming from somewhere else that starts an extra heartbeat. It is of no worry to me since I feel fine and they said that it would go away with time. I guess it also helps to keep your potassium levels up.
I want to wish everyone a very happy 4th of July weekend! My biggest interests are in the food eating contests and fireworks. Hope everyone enjoys their weekend!!!