Deb's Posts

I haven't made a journal entry in a really long time! I had good intentions to do so at my one year surgery anniversary (October 20th), but the day before that, my 85 year old dad had emergency mitral valve replacement surgery, and we had a few tense weeks thereafter. I am happy to report he recovered completely, and he is now 86! I will write more about his surgery later. I got to be a spectator at his event, and it differed greatly from my own. A few things have happened in the past few weeks that made me decide that it was time for an update. 1.) I ran into some old friends a few weeks ago who also have had some heart problems. After discussing my on-going problems with palpitations, they urged me to reach out to anyone and everyone and to not give up trying to resolve them. They have both had issues that took a few years to resolve. 2.) Thomas Hunt called me out about updating a day or two ago. Yes, I have been lazy, so thanks Thomas! 3.) Today I received a note in the mail (snail mail) from a woman in Pennsylvania. Her husband is facing valve surgery for three leaky valves, and she wanted to talk to me about my surgery. I took that as another sign to update. So here goes..... How do you sum up 17 months after valve surgery? Gratitude is the first word that comes to mind. There is not a day that goes by that I don't look at my scar and thank God for my many blessings. I thought I would hate my scar, but the the opposite is true. Instead of being a big, ugly memento of pain and suffering, it is a daily reminder of everything good in my life. I actually really like having it. That probably sounds ridiculous, but every time I see that thin white line, I remember all the love and support that me through this whole ordeal, and I can't help but smile and feel humbled and blessed. I keep reading journals of people who say their lives are "back to normal" after their surgeries, and I really don't feel that way. My surgery was defining moment in my life, and I like to think it made me a better person. I know I am not the first to say it, but having open heart surgery truly has been a gift (although, I'm hoping it is a once in a lifetime gift!). I've been blessed with a newly repaired heart, a new appreciation of my amazing family and friends and a second chance to do good in this world. How can that be anything but a gift??? On the health front, I spent my summer trying to adjust to my constant heart palpitations, but they are very difficult to ignore and/or get used to. I was told by two electrophysiologists that they were nothing to worry about, but that didn't make me feel any better physically. The palpitations make me feel anxious, weak and sometimes light headed, and I spent the entire summer dealing with them on a daily basis. Some days were definitely worse than others, but I could always feel them at some point throughout the day. In September, I went to a new cardiologist, and he told me to try increasing my magnesium to 600mg/day, to see if that would help. While I think it helped a little, it wasn't a significant change. The cardiologist then put me on a very low dose beta blocker (bisoprol) and assured me it would help my palpitations. Well, it worked, and I feel sooooo much better! I'm not sure how beta blockers work because I still have very irregular heart beats, but I just don't feel them nearly as much. My blood pressure and resting heart rate are still really low.....usually resting heart rate is about 50, and BP is 90/50.....but once in awhile, I will feel "off" and take my pulse and BP and they will always be even lower. My pulse has been as low as 34 and my BP as low as 83/37. It kind of amazes me that I don't feel worse when it is that low. I still have no idea why it is so low (other than the beta blocker making it lower), and I'm hoping the cardiologist can give me a good explanation at my next visit. Even thought the beta blocker is making me feel better most of the time, I still feel like crap whenever I go to ski at altitude. And I love to ski. I don't get out of breath, but I feel extremely anxious and fatigued while I am there. I am able to ski, but I sure don't feel good, and that really takes the fun out of it for me. So, I need to ask the cardiologist about that too. I'm not going to give up trying different things, as we really hope to move to a mountain town someday. My shoulder took about a year to get better. I can still feel some soreness when I do certain things, but it is 98% better, and I can do most anything I want or need to do. I am realizing that most of this stuff just takes time to heal and sort out, so for those of you with post surgery problems, BE PATIENT and hang in there! Shelly Poluka is the name of the woman who wrote to ask me about my valve surgery , and she would like to hear from anyone else who has/had three bad valves. She doesn't do email and doesn't have a journal, but I can give you her phone number if you would be willing to give her a call. She is very worried about her husband, and they have some big decisions to make in the next few months, so if you are willing to help her out, please leave me a note on my guestbook, and I will give you her number. Last but not least, it is time to give a big shout out to Adam Pick for creating the incredible resources he has made available to everyone facing valve surgery. His book, blog and especially the heart valve journals, provide not only a wealth of information, but more importantly, a connection to and emotional support from those who have been or are about to go through open heart surgery. His work is truly a lifeline for anyone filled with the fear and anxiety of facing valve surgery. The connections made through the heart valve journals are incredibly empowering. Our virtual friends provide the answers to the questions and anxieties torturing our minds. And it is SO COMFORTING to know you're not alone! Having an outlet to express fears and concerns is huge. No one knows how we feel better than the people on this site. A thousand thanks to you Adam......you have done so much for so many facing the greatest fears of their lives. I think most of us who have been through open heart surgery feel a need to give back and make this world a better place. It is a second chance to do good in this world. You have done good, Adam! Godspeed and God Bless! Deb Z

Last Friday, after calling every other day for three weeks, I finally heard from Dr. Saliba regarding my truview monitor results. He said I have a lot of extra and skipped beats in my upper atrium, and while they are not dangerous, they can cause symptoms (palpitations, light headedness etc.) that are very annoying and difficult to ignore. Some people feel every irregular heartbeat (that would be me!) and some don't. He doesn't want to treat the irregular beats unless they are really bothering me because he said sometimes the treatment (meds and/or ablation) can sometimes make it worse. That is not what I wanted to hear, but it did make me want to learn to live with this wacky heart rate of mine. I was feeling really good for the past month, but this week, I started having the really slow heart beats again. I'm thinking it might be stress related, but I don't know. I'm going to try to figure that out. We just sold our house (after only four days on the market) and we have nowhere to go and have no idea what we are going to do. It's a little overwhelming at the moment, but we'll figure it out. I think that might be why my ticker is acting up again though,. My shoulder continues to hurt, but I think it is SLOWLY getting better. My physical therapist keeps telling me not to get discouraged because it can take months to get better, and I am right on track. Just seems like it has been about the same for a long time. That's all for now. I'm still so grateful to be back doing the things I love. There is not a day that goes by that I don't look at my scar and thank God that I am here and doing so well. All good wishes to those of you waiting and recovering. Deb Ziegler

Well, I turned in my truview monitor a month ago, and I am still waiting to hear from my doctor at CCF for the results. He told me to call him a week after I turned in the monitor, which I did, and he has yet to call me back. I have continued to be a pest by calling there every other day, but it hasn't helped much. I was told by his NP and receptionist that he wants to talk to me about the test, but he never calls me back. Very frustrating. This is the first bad experience I have had at CCF, and it is very disappointing. Guess I'm just used to Dr. Gillinov and Dr. Griffin who return your calls/emails immediately. So, I don't know much more than my last post. Dr. Saliba's nurse practioner did tell me she didn't see anything alarming on the strips she read, so that is somewhat reassuring. The good news is that I have been feeling really good for the last month. I haven't had any dizzy spells, and I am able to work out and do all the things I love without a problem. I am very grateful for that. I still have a very sore shoulder, and after having an MRI, found out I have a "frayed" rotator cuff muscle and my whole shoulder is very inflamed. I don't need surgery, but it will take a long time to heal. That is also a result of the surgery, but a pretty minor complaint in the big picture. I had the pleasure of meeting Chris Hanson and his lovely wife, Samantha and their two adorable boys a couple weeks ago. As some of you know, Chris had a mitral valve repair done last September and found out in December that his repair had failed. He is scheduled for his second OHS on June 20th at CCF with Dr. Gillinov. While I can't even imagine what a roller coaster he has been on, he seemed to be in a good place regarding his upcoming surgery.....he just wants it fixed and over with. Let's all give Chris a big shout out and say some prayers for him for a successful repair this time around. I handed off my wedge pillow to Chris (I'm hoping I won't ever need it again) and we compared surgeries for a little while. We both went to CCF, and we both had Dr. Gillinov as our surgeon. Chris had his mitral repair done robotically, and I had my mitral and tricuspid valves repaired via mini sternotomy. We got to talking about costs, and it was pretty interesting to compare our total costs. Chris had one valve done robotically and was in the hospital for four days. I had two valves done and was in the hospital for nine days. We both requested itemized bills from the hospital. My total bill for everything (pre op testing, surgeon, hospital etc.) was $119,000.00 after insurance discounts. Chris' bill was tens of thousands of dollars more than mine (I don't want to give out his numbers without asking him.) One difference was that I didn't have a heart cath done at CCF and Chris did. But he only had one valve done and was in the hospital 5 days less than me. How does that work???? Are the robots that much more expensive? I am just curious if anyone else would like to share their hospital bills. I find it just incredible there is such a huge difference in cost. Hope you are all doing well in your recoveries, and to those of you waiting.....God Bless. It is so hard to wait! Deb Ziegler