Preparing my room for recovery. Things within reach.
Update posted on...
April 19, 2017
It's been a while, 4 or 5 years since writing. But, I'm back! Need to have surgery again! Apparently the work done at Cleveland Clinic, Weston, Fl, will need to be redone. New aortic arch replacement, new Aortic Valve, new Mitral Valve, new MRI safe pacemaker/leads, scar revision, and something I didn't quite catch on the back of the heart. Reduces stroke chances by 80%??? Anyway, old pro at this. Not looking forward to it, but, much more prepared this time. Already have my recovery room at home ready to go. I'll post pics. Since my last surgery, I have been a mess. Turns out the Amiodarone toxicity caused my thyroid to first top out at well over 7.77, then bottom out to 0.0....I was ALL over the place and suffering the ill effects of thyroidism. Finally got it figured out and began feeling much better, then this info about my valves came up. Oh well, back to the drawing board. I'll try to remain active on here as long as possible. This site really helped me alot during the first surgeries. Always great to hear from others that are experiencing the same things...makes you feel less "alone". I have met my suregon a few times, Dr. Tomas Martin, Orlando Hospital and I have very high expectations. He seems to be a caring surgeon. He is a man of God, has traveled the world volunteering his services to very needy folks. It's good to know and feel that he got into this field as a passion for doing good and helping people. My local doctors appear to hold him in the highest regard. They have told me that if they needed surgery, he would be their choice. 9 May is right around the corner (20 days)...I will be praying and sending positive healing thoughts to those of you having surgery in the coming days, weeks, months....all of you! Abundant blessings to all of you. If you're not religious, I wish you abundant positive vibes and healing thoughts!
I'm wondering how folks deal with depression. If they suffer with it or take medications. Do they know they're depressed? I do know I feel like crap all the time and I'm wondering if I may be depressed. I really do not want to take anymore medication so I'm not rushing to a psych doctor yet. I'm just curious to hear from others and how you're dealing with your condition. For those that may answer, thank you in advance.
Friday night at 9:00 pm I started having severe heart fluctuations, dizziness and an overwhelming feeling of doom! My blood pressure was very elevated, as was my normally very consistent pulse. You can take my pulse 20 times a day and my pulse will be 70. Pacemaker? I think so. Anyway, I felt compelled to call 911. They took me to a local hospital that also specializes in heart and stroke emergencies. Pacemaker was interogated and some adustments were made. I was admitted for 3 days. I saw my cardiologist for a total of probably 5 minutes the whole 3 days and never got a "warm fuzzy" as if he knew what he was doing. Rather it felt like he was just guessing and taking shots in the dark. I was actually told by some nurses (and it really amazed me that they would be so open) that he wouldn't be their first choice and I was given the names of some first rate cardiologist. As soon as I can get the ball rolling, I'm changing docs. After 6 or 7 weeks I should not be having the same medication issues. But then, what do I know. Maybe this is normal?
This is my first journal entry. I worked an hour and half on it last night and something happened where it just disappeared. So, I'm starting all over again. I recall a time when that would have really pissed me off but the new Roger realizes, there could be much worse things in this life. So I just had to laugh and move on.
I'm going to chronicle my journey so this first journal entry might be a bit longer than the ones that will come afterwards. My journey actually starts back in 2003 when I was first told I had an Aortic Root Aneurysm. Don't worry, I'm going to jump quickly to the present time and not drag you through every little problem that came up since 2003. Oh, and for those that don't know, and in layman's terms, an Aneurysm is a weakening of a part of the wall of a given artery. It can continue to grow under pressure until one day it pops. Most aortic aneurysms, as high as 99%, are fatal if they pop. Originally, I was told not to worry about the one they found on me. It was rather small and they said "it's fairly normal", "lots of folks have them and never know". So I did just what the doctor said. Fast forward to June 2012. I was seeing a new neurologist for my strokes vs. MS. They weren't sure what was going on with me. I was either having strokes since 2003 or I had MS and there were "flair ups". In either case, I was sent to a local cardiologist for some tests. An echocardiogram found that aneurysm to be much larger than back in 2003. It had grown to 4.8cm. And apparently, that was also stretching out my aortic valve causing blood to "regurgitate" or flow the wrong way. This can cause all sorts of symptoms like dizziness, exhaustion etc. My cardiologist sent me right away to the Cleveland Clinic down in Weston Florida. The surgeon said let's wait a couple months and repeat the echocardiogram to be sure of the measurement. So I went back to my routine of riding bike 5 - 8 miles every day and then some light weights. I was actually starting to feel the best I had in many years. Not to mention, I started to notice muscles I hadn't seen in years coming back…even my old six pack was showing up. I was quite proud of myself, still there was that nagging worry in the back of my head that I had a bomb waiting to go off in my chest. Did you know that's how Actor John Ritter died suddenly?
So I go back for my tests in Oct. Follow-up in Nov. The surgeon said it's even larger than what my cardiologist measured. It was now 5.8cm and we needed to do surgery sooner than later. I said well let's do it before the thing pops. I told them I needed just a week or two to make sure my affairs were taken care of. Surgery was scheduled for Dec 3rd, 2012. Now as I go on, let me say now that I was surrounded by family and friends. It was a wonderful feeling to know I was not alone, ever. "We" were going to get through this. My mom and sister never left my side while in the hospital, EVER. My girlfriend flew out from California and stayed as long as she could. I had friends watching my dog Ben back home for as long as needed. Friends that happened to live 3 miles for the Cleveland Clinic (how is that for fate) housing my visitors/family and me after the surgery. Completely opened their house to us for as long as needed. And last but not least, the wonderful cards and stuffed animals I got along with so many prayers and positive thoughts.
3 December 2012, the beginning of my new life. I couldn't wait to have the surgery. Fix the aneurysm, fix the valve, and I'm back to normal in a few weeks. I wake up in the ICU after surgery and I'm a chatty Cathy. Asking questions and trying to be really positive and upbeat. At about the 7 hour post surgery mark, I looked at the nurse and told her, "I'm not doing very well, I'll going out, I'm going out"…with that, I went into cardiac arrest. After chest compressions and drugs etc…they brought me back to life. Everyone telling me that I gave them a scare but everything will be fine now. About an hour or two later, I crashed again. More chest compressions (mind you, I just had open chest surgery) and these folks are pushing down hard on my chest. I may not have felt it at the time, but I still feel it daily now. So I wake up the second time, breathing tube in my throat, more tubes and "stuff" coming out of my chest, more people around me than ever before. I knew something had gone terribly wrong and although I was temporarily brought back, I felt like I didn't have long and I didn't want to prolong the inevitable. I kept trying to motion to the doctor to tell my family I love them, and then kill me. End this all now. I even thought about my poor mom. I thought it would be best if I just die quickly and she doesn't have to keep going through all this craziness. One of the nurses in the room caught on and told the doctor, I think he's saying to tell his family he loves them, and he wants you to kill him. The doctor looked at me and I did what I could to shake my head and point at the nurse…YES, YES, she's got it!!! That's it, now just do it! The doctor looked at me and said "oh no, Roger, we don't do that! You are doing fine now and you will pull through this, you are doing much better already". I didn't believe a word he said. I didn't believe anybody. I knew I was dying and I wanted it to go quickly…of course. And, having gone into cardiac arrest twice already, I kind of knew what to expect. It's just lights out. No trumpets, no lights in a tunnel, it was just lights out. Quietly slip into darkness, no big deal. Like falling asleep. Well, thank God doctors don't do what crazy patients ask them to do in an altered conscience. I was on many drugs and had gone through quite a bit so I wasn't really in any state to be making decisions, obviously!
So, when I woke up the second time, I found that I had a new permanent fixture in my chest. A pacemaker. A device that keeps your heart beating as normal as possible. Then shortly after that, I started crashing once again. I was bleeding to death. The surgeons had to reopen me to find out why. They did, damage to my right coronary artery. Who knows how that happened. Could've been the compressions or a slip of the hand, regardless, now that needed immediate attention. Back into surgery they harvested some veins from my left upper thigh. The first vein turned out to be too short, so they took another longer one. At this point, what is one more scar? And no one will be visiting my upper thigh for a long time anyways!
So they fixed the bleeding, my heart seemed to started beating correctly with the help of the pace maker…could it be, everything was going "ok" now? Opps…nope! One more thing was going on, I couldn't breathe! So they began looking into that and low and behold, somewhere during all the surgeries, compressions etc…my Phrenic nerve was paralyzed. It's the nerve responsible for moving your diaphragm up and down during breathing. Now my right diaphragm was useless and pushing up and collapsing my right lung. At this point I'm thinking ok, what's next?
Well, it's been 53 days as of today. I'm slowly, too slowly for me, getting slightly better. And I have lost about 30 lbs! I don't recommend this has a good way to diet! I found this site that has been a total blessing. I was here at home just waiting for my heart to explode in my chest when I found this site and the many wonderful people that wrote personal experiences. I was not alone with the pounding heart thing. I found it kept others awake at night due to pounding in our heads. Enough to drive you nuts and worry you sick, yet the doctors had no answers as to why it was happening. Let's you know you're not alone.
Anyway, let me stop here, this first journal entry has gone on long enough. My next entries will be shorter and will chronicle my recovery and beyond in the hopes that it may help someone one day. until then, God bless and hang in there.