Deb's Journal

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

My TruView monitor arrived today and I am trying to figure out how to get the thing hooked up and working. It is way fancier than the other monitors I\'ve worn, but it should be a lot more comfortable, and hopefully, more accurate. Insurance will not cover this one, (you are only allowed one monitor per year), so we are paying for it out of pocket. I just hope It isn\'t a waste of time and money. I feel pretty good this week........haven\'t had any dizzy spells and not as many slow heart beats. It\'s still jumping all over the place though. My biggest complaint as of late is my incredibly sore shoulder. My left shoulder has been sore ever since my surgery, but it really didn\'t bother me much until the past few weeks. I didn\'t use my arms much while my sternum was still healing, so my shoulder never felt too bad. And it didn\'t really bother me while I was skiing either, but we went land sailing a few weeks ago, and it has been excruciating ever since. The pain in my shoulder is way worse than any of the pain from the surgery. I don\'t know what they do to your shoulders during surgery, but it can\'t be anything good. Anyone else out there have shoulder pain that won\'t go away? I\'ve been going to a chiropractor for two weeks of cold laser therapy, but that hasn\'t done a thing. That\'s enough complaining for one day......I\'ll shut my pie hole! It may not sound like it, but I really am extremely grateful for my many, many blessings!

Jim and I took a road trip to Cleveland yesterday, so I could get my crazy heart beats checked out at CCF. For the last three months I have been having a lot of episodes of very slow heart rates (around 40 beats per minute) and then some very irregular and fast heart beats, and a few dizzy spells here and there too. The docs around here told me it was nothing to worry about, and for awhile, I didn\'t worry. But then I started feeling rotten again and decided to ask my surgeon for a suggestion. He gave me the name of an excellent electro-physiologist at CCF, and I met with him this morning. Dr. Saliba, like all the doctors I have met at CCF, was exceptionally likeable. I swear they must make the doctors there go through some sort of training so they are not only excellent doctors, but also genuinely warm and kind and helpful human beings. I have yet to meet one who is not outstanding in every way imaginable......and I\'m not just saying that because I went there! The whole place is outstanding.....everything runs incredibly efficient. There is just no comparison to the way that place works. If we want to overhaul our healthcare system, CCF would be an excellent role model for the rest of the country. Dr. Saliba explained to me that my normal resting heart rate is very low. (I didn\'t have a low heart rate before the surgery.) When your heart rate is low, your blood pressure tends to be low also (mine is usually 90 over 50 or less), so I may have to be careful when I change positions so that I don\'t get dizzy. I told him that sometimes I get dizzy even when I\'m just walking around, but it usually only lasts a couple seconds. I also feel very weak when that happens.....like I\'m going to collapse, but then it goes away, and I am fine. He said I also have a lot of extra atrial beats (a-fib \"runs\") that only last a few beats or a few seconds, and then my heart sort of stops and restarts itself. He thinks that when my heart is restarting itself, my slow heart rate may be taking extra time to restart my heart after the irregular atrial beats, and if it takes too long to get going, I could get dizzy. He has ordered a three week continuous monitor for me to wear so they will know exactly what is going on. I may need to go on some meds, or need a pacemaker or an ablation or nothing at all depending on what the monitor tells him. He did say I will probably develop full blown A-fib sometime down the road. He said people with a lot of a-fib runs usually develop a-fib at some point. I asked how long before that happens, and he said there is no way of knowing. Sometimes you can go for many, many years and not get worse, but other times it will just suddenly get worse out of the blue. He told me not to worry about it because there is nothing I can do about it until it happens. He said my stress test showed that my heart is doing exactly what it is supposed to do while I exercise, so that is a really good sign. He said he really wouldn\'t recommend any treatment at this point unless my monitor shows something unusual or if I start having more symptoms. Now I just have to wait for the monitor to show up. We are home now, and it is supposed to be sent to me with instructions on how to hook it up. Should be interesting:) My valves are still working good, and I\'m grateful that. My energy is so much better than it used to be.....I don\'t have that constant urge to go lie down anymore. I really didn\'t think I had any symptoms (other than palpitations) before my surgery, but I was definitely fatigued! We stayed at \"The Glidden House\" in Cleveland this time, and it was a whole new experience. It is in the museum/university district of Cleveland, and it was a piece of paradise compared to the rest of Cleveland. Lots of museums, parks, restuarants and beautiful old buildings. And it is less than a mile from CCF. Definitely worth checking out if you have time kill. Godspeed and God bless.

I had an epic day today. Four months and 8 days after my open heart surgery I skied in knee deep powder at 11,500 feet above sea level. My ticker was working as hard as it is ever going work for six hours of difficult (but extremely fun!) skiing. I think I have officially recovered! For the past six weeks, my heart rate has been bouncing all over the place.......from as low as 37 beats per minute to as high as 130 beats per minute .......on a daily basis. I\'ve had a few dizzy spells and have been monitored and tested only to be told my heart is skipping a lot of beats and throwing some extra beats, but it is \"nothing to worry about\". But I did worry. When your heart is only beating 40 beats a minute, you feel pretty weird. It beats hard and slow and you are very aware of every irregular beat. When the doctor told me it was nothing to worry about, I asked him if iI could go skiing at altitude, and he sort of back tracked and said I shouldn\'t go until I had a stress test. I had the stress test last week and passed, so he gave me the okay to go skiing in altitude as long as I waited at least 36 hours after arriving to ski. He said it was very important to get acclimated a little. We arrived in Snowmass Colorado last Friday, and I have been skiing for the past three days. I have the slow heart beats every morning when we first go out, but then they get more normal as I ski more. It\'s almost like the harder I work, the more normal they become. Not sure how that works, but it is a HUGE relief to know my ticker can handle whatever I throw at it.....especially in this altitude. I will no longer be afraid to push myself in whatever I do in the future. And I am really going to try to learn to just live with these weird heart beats. I don\'t want to take any medicine, and I\'m tired of going to doctors and having tests. I skied hard today, and I am fine. Today was a milestone for me. I reached my pre-op goal of skiing by the end of February.......thank you Dr. Gillinov! As I was riding up the chair lift today, I thought of all I have been through in the past four months. I had my sternum sawed open, my heart stopped, cut open, valves repaired, heart restarted and sternum wired shut. There were bumps in the road, but just four months later, I\'m skiing with great friends in the beautiful mountains of Colorado. How amazing is that??!!!! I am one very lucky and oh-so-grateful lady!

I went to the electrophysiologist yesterday, and he was GREAT! He went over all my records from here and Cleveland....spent well over an hour doing that. He scheduled me to get a holter monitor right away, so he could see what was going on. I got the holter yesterday afternoon, and I\'m so glad I did. This morning at rehab, I got on the treadmill and the girls asked me how I was feeling.....I told them a little weird. They said my heart rate was going from 70\'s to the 40\'s while I was exercising. That is definitely not normal. It was jumping back and forth constantly, but I didn\'t feel that bad, so I kep going. When I increased my speed and incline, I started getting dizzy. This was a first. I haven\'t ever been dizzy because of my heart before. They made me go sit down, and I never got to finish my workout. They called my new doctor and he told me not to work out until he has a chance to read my Holter Monitor. It will take a few days for him to get that back and read it. . I\'ve been feeling pretty good since I got home, but I am still wondering what the heck is going on with my ticker. I am so ready to get this behind me! For those of you in the Midwest.....stay warm today!

I showed up at rehab today, and after getting all hooked up and waiting for my blood pressure to be taken, the rehab girls asked me if I was feeling okay. I said yes, but I had been feeling like my heart was jumping around a lot the past five days or so. Well, I was right. My pulse was 40 beats per minute sitting there at rehab, but a few minutes later it was back in the seventies. There are times at home when I will feel weird and my heart will be either really slow (40) or really fast (110) beats per minute. The rehab girls suggested I see a doctor. My cardiologist told me not to come back for a year, so I am going to see an electrophysiologist tomorrow. Many thanks to the rehab girls for getting that all set up. They have been so great! I really hope I can get this stuff all figured out soon. I would really like to go skiing and sailing again without having to worry about my ticker! As I said, it is always somethin\'...... The sore spot on my sternum is getting better, but it still isn\'t gone. Every time I try to do some light weights or push or pull anything too hard, it gets sore again. No more weights, and I\'m trying really hard not to do much with my arms. Actually, it is my pectoral muscles that seem to aggravate it. I was really hoping to be on cruise control at this point in my recovery, but I\'m not complaining. I\'m able to do pretty much anything I want to, and I have the energy to do it. And my valves don\'t leak anymore. And it is snowing ......yeah!

It\'s been almost three months since my surgery, and while I feel really good energy wise (way better than before the surgery), I\'m still having some issues. I still have an extremely sore spot on the left side of my sternum that shoots pain over into my left breast. Some days are much worse than others, but it is always kind of there. It\'s much worse if I try to lift anything or use my arms for anything more than normal stuff. My cardiologist here won\'t give me any answers....says it\'s a surgical question. I called CCF and they said it is either nerve damage or costochondritis and told me to take advil for a week. The advil definitely helps, but the pain is right back after it wears off. Anyone else out there had this problem? My palpitations have quieted down significantly, and I am very grateful for that. They are still there on a daily basis, but they aren\'t constant anymore, and I don\'t feel them as much. I\'m still going to rehab three times per week, and I love it. The girls who run the rehab place are AWESOME, and I have really learned a lot from them. I don\'t really need to go anymore, but I am going to go as long as my insurance will permit just because I really like it, and I learn a ton. I would also like to start working out with weights if my sternum ever gets better. There is not a day that goes by that I don\'t think about how fortunate I am. When I think about every thing that\'s happened in the past year, and where I am today, I am filled with gratitude for all the love and support I have had throughout. Godspeed and God Bless

Anyone who has had valve surgery hopes and prays the surgery will be successful, but it isn\'t until you have a post surgery echo cardiogram that you know for sure whether  or not your valves are working properly.  I have read enough of these journals to know that \"redo\'s\" aren\'t all that uncommon.  So, after having my echo on Tuesday and meeting with the cardiologist on Wednesday, I was a little anxious about what the results would be.  The cardiologist said my trip to Cleveland was well worth it......my valves are working \"perfectly\".  He said my surgeon did a really good job because the valves aren\'t leaking at all, and apparently that is quite rare with repairs......usually there is still some leakage after the repair.  I was so relieved!  I think the smile on my face turned into a permanent grin for the rest of the appointment.  The cardiologist then gave me the results of my Holter Monitor test and said my heart is skipping beats and throwing extra beats in both the atria and the ventricle, but it is not in A-fib.  There were a few instances of \"atrial flutter\", but no A-Fib.  I asked if there was a treatment for the extra and skipped beats, and he said no, but they weren\'t dangerous or harmful......just annoying.  He got that right!  It feels like a fish is flopping around in my chest.  He said my heart is still traumatized, and the palpitations may clear up in a few more months, or I may just have to learn to live with them.  I\'m still hopeful they will go away, but in the meantime, I\'m trying to ignore them.  It\'s difficult.  The doctor also told me I could quit taking the rat poison (coumadin), and that really made my day.  I asked him if it would be alright to stop taking my Lipitor and try to get my numbers down with diet and exercise, and he said sure.  I just need to get retested in 6 months to see where my cholesterol is at. So, I am officially off all my meds.  Hooray!  I wasn\'t sure if that was ever going to happen, but I\'m really happy it did. Rehab is going well, and I love it.  It is very reassuring to be all hooked up and monitored while you are pushing your newly repaired heart.  I think I would be afraid to push myself if I were just on my own.  I have yet to be able to work my arms in rehab. I\'m still having shooting pains in the left side of my chest whenever I overdo it with my arms.  I called the Cleveland Clinic about that, and they said it is probably nerve damage, and it should gradually improve.  Gradually is the operative word.  It\'s pretty slow going. My sternum is still pretty darn sore considering I am seven weeks out.  I guess that\'s why they tell you recovery is 12 to 16 weeks.  I think it is going to take a long time for my sternum to heal.  Recovery is an adventure in itself......not really what I was expecting. I figured things would gradually improve a little each day, but that hasn\'t been the case. I\'ve had more pain along my sternum in the last three weeks than I did the first four weeks. Every day the pain is different too.....hurts in a different place or in a different way. Maybe it\'s because I am trying to do too much and just aggravating my muscles and tissues, or maybe that is just the way it is supposed to heal. I just know it is taking a long time! I still can\'t sleep on my side. I\'m getting close, but I\'m not there yet.   Speaking of sleep, or lack of it, I\'m only getting 2 or 3 hours a night unless I take Benadryl or Tylenol PM.  When I don\'t sleep, my palpitations get a lot worse, so I really want to figure this out.  Might have to try a sleep clinic. I\'ve tried ambien, and while it works, it is also addicting. Don\'t want to go that route. Anyone have any suggestions. I am still full of gratitude for my medical team, family, friends and Adam Pick for establishing this website. I wish all those facing surgery peace and strength......it won\'t be as bad as you are imagining!        Sent from my iPad

I just finished my first week (3 days actually) of rehab, and I can\'t tell you how good it is to be doing something good for my body again. I wish I could go more often! I was in A-fib when I arrived for the first two sessions, but this morning I was in normal sinus rhythm when I arrived (yeah) and was in atrial \"flutter\" when I left. So, my heart is still jumping around a lot. I\'m really really hoping it settles down in the next few weeks. It really drives me nuts when it races and skips beats all the time. I was supposed to have a cardiologist appointment on Wednesday, but they called and cancelled me. Kind of a bummer since I have all this A-fib going on. Guess their eccho machine wasn\'t working, and the doctor doesn\'t want to see me until after my eccho. It\'s all been rescheduled for next Wednesday, so another week of waiting. In the meantime, I have been hooked up to a \"Holter Moniter\" for the past 24 hours, and it will stay on me for another 24 hours. It records everything my heart does, so the doctor will have a pretty good idea of what it is doing when I see him next week. Jimbo will be gone this weekend, so I hope I don\'t have any unusual events while I am by myself. At least I can drive myself wherever I need to go now. That is HUGE! Be well and be safe....

I started rehab this morning, and it was great to be moving again. I was really worried they might not let me workout because I have been in A-fib for the last two days. My metropolol pills were done on Sunday, and monday morning I went into A-fib and have been in and out ever since. When I arrived at rehab, my resting heart rate was 115 and I was in A-fib, but they just hooked me up and monitered me the whole time, and it went fine. They won\'t let your heart rate go more than 30 beats per minute higher than what it was when you come in, so I was working at about 135 to 140 for the forty-five minutes. Now that I am home, my heart rate is in the 70\'s, so that is good. I go to the cardiologist tomorrow for another eccho and visit, so we\'ll see what the doctor says about the A-fib. It is really disappointing and worrisome to be having this after going through the surgery. I\'m really hoping it goes away, but I have the feeling I\'m not done with this yet. I\'m just taking it one day at a time and hoping and praying my heart settles down. Have a funny day......and be grateful!

I called the rehab people again today, and they FINALLY got me on the schedule. I go next Monday for a 1 1/2 hour informative appointment, and I start actual rehab 8:00 Tuesday. Yeah......finally! Rehab will be three times a week (Tuesday, Wednesday, Thursday) for three months. I can\'t wait to get started! My chest pain is a little better today, and I\'m really grateful for that. I want to thank Jim Davis for his post on my guestbook and for the tip about the NSAIDS. I took some Advil this morning, and my pain improved a ton within an hour. Not sure if it will stay away, but I\'m glad for the reprieve. It will be a real bonus if it helps my palpitations too:) I keep forgetting to ask if there is anyone else out there who has been through surgery and has been cold afterwards. I have not been able to stay warm since my surgery. I\'m wearing long underwear and have the heat cranked, and I\'m always cold. Quite a change from the daily hot flashes I\'ve been having for the past ten years! Has anyone else out there had trouble staying warm after surgery, or is it just me? It\'s a beautiful day in Wisconsin, so it\'s time to get out and walk and enjoy the sunshine. We haven\'t had much of that lately. May God Bless you all on Thanksgiving.

I\'m about 4 1/2 weeks out, and I seem to have had a few setbacks this week. Beginning about last Friday, I started having palpitations again. My heart seems to be skipping a lot of beats, and then it speeds up a bunch of beats. This happens pretty much all day, but it is worse at night. I did finish up my amiodorone meds last Friday, so maybe that has something to do with it. I\'m really hoping they go away, but I realize they may not. Dr. Gillinov told me sometimes they do, and sometimes they don\'t. I go to the cardiologist next week, so maybe he can tell me more. Anyone else out there experience palpitations after surgery? Did they go away? I felt really good yesterday, and I actually drove myself all over to do a bunch of errands. I felt great all day until I went to bed. All of a sudden I was having severe stabbing pain from my sternum across the left side of my chest and into my left breast. The skin is also very sensitive and a little numb. It was like touching a nerve at the dentist.......by far the worst pain I\'ve had since the surgery. It is a little better today, but not a lot. I just can\'t move much. I saw the PA at the cardiologists office when I went to get my coumadin checked today, and she said it is probably nerve damage and it will take a long time to go away. She also sent me for a chest x-ray to make sure one of the wires they used to wire my sternum together didn\'t break. I just don\'t get why this happened all of a sudden after 4 weeks of not having it. I\'m still trying to get my rehab scheduled. I\'ve been trying for over two weeks, and they still haven\'t called me back. They said they were waiting for my insurance to approve it, but I can\'t imagine that taking two weeks. I was anxious to start rehab, but now with this new pain, I\'m not so sure how I will do. My energy level is good, and I really want to get stronger, but it really hurts to move right now. I broke the no driving rule yesterday, so I hope that didn\'t cause this new pain. It certainly didn\'t hurt at the time, but maybe I irritated something. It\'s always something! I hope you all have a wonderful Thanksgiving. I am so grateful to have this surgery behind me and to have a second chance at doing good in this world.

In some ways it is hard to believe that I am three weeks out already, but in other ways, I am amazed at all my body has gone through in such a short amount of time and at how well it is bouncing back. I feel pretty good! I\'m off the pain meds completely, and I just have some soreness along my sternum. I think it is going to take awhile for all those bones, muscles and tissue to heal. I tried to sleep on my side a few nights ago, and I lasted about 3 seconds. It was really painful. I don\'t know how long it will be before I can be on my side, but it won\'t be soon enough. My body seems to be adjusting to all my meds better now too. I\'m not dizzy, lightheaded or spacey anymore. I can actually read and concentrate again, which is really a blessing. I\'ve been reading lots of books and enjoying them all. I\'m getting stronger every day and have been out and about quite a bit this past week. Went to a movie, out to dinner and made a trip to Costco yesterday.....whoo whooo! It\'s really nice to do normal stuff again. I was hoping to start rehab this week, but I haven\'t been able to get the rehab people to call me back to set it up. Very frustrating. I\'m really anxious to start getting back my strength.....it is amazing how quickly you lose muscle sitting around doing nothing all day. My relatively strong, pre-surgery arms are now skin and bones. I\'ve lost some weight, and I think is was all muscle. On the down side, I\'m still not sleeping, and it is getting old. I\'m only sleeping about 2 to 4 hours a night, and I don\'t nap during the day. I have no trouble falling asleep, but I wake up about an hour or two later and lay there for the next four or five hours wide awake. Then I usually sleep from about 4 to 5:30 or 6:00 when the dogs wake me up. It\'s not enough, and I\'m starting to feel really tired. I got the okay to take some benedryl for sleep, so I\'m hoping that will help tonight. I\'m sure the fact that I can only lay on my back all night is part of the problem, so maybe it will get better after I heal some more. I still can\'t drive, and that is really bumming me out too. I feel good enough to do things and go places, but I can\'t drive for a few more weeks. Jim has been GREAT about taking me where ever I need to go, but he has to miss work about three times a week just to get me to my doctor appointments, so I feel bad asking to take me to stupid stuff like going to get my haircut or to the grocery store. I\'ve been bumming lots of rides, but it is hard to be so dependent on other people. I might have to break the no driving rule soon:) Jim has been taking great care of me since Josie left, and I\'m pretty overwhelmed with gratitude for all that he does around here after working all day. He\'s getting really good at cleaning, raking, cooking, and he has been the best servant I could ask for. Thanks Jimbo.....you\'re the best! Godspeed and good luck to all of you waiting and recovering from heart surgery.......it truly is an adventure.

I\'ve been home for one week, and things seem to be going pretty well. I had a few bumps in the road trying to get my coumadin tested, but I think I am on the right track now. It is really a pain trying to keep track of all these meds and when to take them. Josie printed up a nice little spread sheet, so we could keep track of everything, and it is working really well. Speaking of Josie......she is on her way back to Portland. Sigh. I am really happy for her because after two and half weeks of taking care of me, she deserves to go back to her friends and fun life. She was great though, and Jim and I are going to miss her. She was my nurse, helper, cook (a really good one!), chauffeur, errand runner and good buddy. Jim is taking over for her now, and he is doing great too. I am starting to get stronger and trying to do a little more, so hopefully, it will be easier on all of us from here on out. I\'ve had the worst pain I\'ve had over the last three days. All of a sudden my ribs and left shoulder started to hurt, and I don\'t really know why. Might be the residuals of getting my ribs split apart during surgery. I am hoping it will go away soon. The vicodin is keeping it manageable, but I am definitely more uncomfortable than I was last week. The good news is that I have a lot more energy, and I have been walking quite a bit. Jim and Josie have been taking me and the dogs to the dog park (we all ride in the back together) and we do a few laps around the park and go home. It is good to be outside and enjoying the dog park again. I\'m not sleeping too well lately. I can only lay on my back, and you can only do that for a few hours at a time before you have to get up and move. So sleep comes in short spurts. I CAN\'T WAIT to sleep on my side! I go to the cardiologist this week, so I am going to ask him when that can happen. Thanks again to all my fans out there. I love hearing from you all!

As fellow HVJ Joe Gimble wrote in my guest book, \"Going home is like walking through a door to another room, another era of your life\". Well said Joe......I feel like I\'m in a whole new place not only physically, but mentally too. What can I say.....being home is great! I have had several people ask me if I received the cards or flowers they sent to the hospital, and I\'m sorry to say I did not. Not sure if I posted the wrong address or what, but I apologize and send a huge thanks to those who sent something. Hope it comes back to you! I would say my biggest complaint at this point of recovery is the side affects from my meds ( at least I hope it is side affects!). My \"morning\" pile of pills still causes light headedness and an inability to concentrate very well. I feel like my brain can\'t process information very well, and I can\'t remember things at all. It\'s frustrating and confusing at times. I really hope this will gradually improve as I am weaned off the pills and recover more from the anesthetic. My pain is pretty darn minimal. I still take vicodin about every eight hours, but that\'s it. Last week at this time I was taking 2 vicodin every 6 hours, so the pain is definitely improving even as I do more. If I improve as much this week as I did last week, I should be off of those in the next week or so. Maybe my brain will get better after that:) I go to my family practioner today to get checked out. It\'s a beautiful day here, so I really hope to get to the dog park too. I miss that place! Josie and Jim continue to take great care of me, and I am so grateful to have them helping me instead of a nurse or someone I don\'t really know. Jim went back to work today, and Josie leaves for Portland on Saturday. I will be on my own next week, but I\'m sure I will be fine. The no driving for six weeks is going to be a problem, but I\'ll figure it out. All for now.

We got home about 2:30 this afternoon, and we are sooooo psyched to be here! The drive home was surprisingly easy and comfortable. I sat in the back seat with lots of down pillows, and was quite comfortable. (The vicodin might have helped!). On doctors orders, we stopped every hour and a half so I could walk around, and we still made it home in only seven and a half hours....good time! As Josie said,\"After nine days in the hospital, an eight hour road trip is like a walk in the park\" So true. I\'m showered, in clean pajamas in my comfy chair, and very happy to be here. Jim is out picking up the dogs, and I really can\'t wait to see them. It\'s amazing how much you can miss your dogs. I haven\'t had a nap today, so I\'m hoping to sleep tonight.

Just made the trek from the hospital to the hotel, and I am so happy to be here! I almost cried when I got to go outside......I am so grateful to be out and actually seeing seeing the sun and feeling the crisp fall air. I finally feel like I\'m on the \" other side \" of this adventure. I know it is going to be a long, slow recovery ahead, but at least I\'ve cleared the first hurdle. I\'m trying to process all I\'ve been through in the past week, and it is really difficult to put into words the roller coaster we have all been on. I\'ll try to write more about that later.......I don\'t think my brain is functioning very well yet. For now, I\'m just so grateful to be here in the hotel with Jim and Josie. They have been THE BEST and have never complained once. One of them was with me at all times for the entire nine days, so I\'m sure they are just as psyched as I am to be over that first hurdle. A thousand thanks to all my fans out there.....I hope to write to each and everyone of you in the days ahead to let you all know how much your support means to me. Please be patient though:) Hope to head for home in the morning. It will be a long drive home, but I\'m glad to be heading that direction!

It\'s the end of day 8 and I\'m still here. And yes, I want to go home, but that isn\'t going to happen today. Still trying to balance my meds so my heart rate doesn\'t get too high or too low. One of the meds is pretty nasty and makes me feel light headed and gives me vision problems. I seem to be getting around better, and the pain is improving, so that\'s all good. Jim and Josie continue to be real troopers......it\'s getting really long for them too. I feel bad for them, but I\'m so grateful to have them here. Have I mentioned that before?? Maybe tomorrow will be the day. Love to all of you. Deb

Mom had a good night, everything was stable and her vitals were good. Now, it appears that she is experiencing a few side effects of the meds that regulate her heart rhythm. They think the dose might be too high for how small she is. It seems like a constant balancing act of lowering the dose of a med to reduce the side effects yet keeping the dose high enough so the med can do its job. They want to keep her for the day and see how she feels. We are of course hopeful that it will be just the day, but at this point we\'re prepared for anything. Mom was right, you gotta just go with the flow.

(josie here) We went through the discharge process today, Jim was waiting in the car downstairs, and on our way out Mom\'s blood pressure and heart-rate dropped significantly. They hooked her back up to the monitors and said they needed to keep her for one more night. The good news is that she was not in a-fib. We are also very thankful we were still in the hospital when this happened rather than back at the hotel or in the car heading home. They think the culprit was a med they call a \"beta blocker\". Mom had a similar reaction earlier in the week to it. They will likely take her off the beta blockers going forward to prevent this from happening again. While one more night in the hospital was not what we hoped for today, we\'re all patient and know that she\'s in good hands here. We certainly do not want to rush anything. She has all the time in the world to rest when she gets home. Since the discharge process was completely done today, getting out tomorrow will be fast and easy. We\'ll stay here at the hotel Thursday night. She has a test on friday morning to make sure she\'s on the right dosage of meds, and then as soon as the results come through we\'ll hit the road. It will probably be a 10 hour drive, so we may get home late friday night or on satruday. One of us will post tomorrow morning, hopefully with the news that she\'s out of there!!

My night got better once they hooked me up to the new drug. My heart rate came back down to normal, and I slept from about 1:00 on, so that was all good. Dr. Gillinov stopped by about 9:30 and reiterated that my heart rate isn\'t a problem, just a nuisance. He said the heart is \"angry\" from being cut on and repaired, and it will take a few months for it to quiet down. He said the heart beat and arrhythmia problems can be treated with medications and shouldn\'t be a reason to keep me here. They are going to spring me tonight....Yeah!!!! I will be on a ton of meds for four to six weeks, but hopefully, not after that. We are going to have to drive home tomorrow because I will need my coumadin checked in Wisconsin before the weekend. Not sure how all this is going to work out, so I\'m just going to try to go with the flow. One thing I\'ve learned in the past week.....you have absolutely no control over anything that happens to you, so you better just go with the flow and try to make the best of it. You not only get to be the patient, but you learn to have patience. That\'s still a really hard one for me, but I am trying to be nice and good. We are all tired of being here and are ready to move on to the next phase. We\'ll keep you posted on the our journey out of here.

I went into A-fib again about 4:00 p.m. this afternoon, and since I no longer have my pacemaker, they can\'t treat it with beta blockers for fear of my heart rate dropping too low. So, they decided to wait and see if I would convert back to normal rhythm on my own. At about 10:00 tonight the a-fib got a lot worse......heart beat was consistently up around 150 instead of my normal 60. They have now stuck me again to start a new drug that will hopefully slow it down in the next 6 to 8 hours. They are talking about cardioversion (shock) for tomorrow. Not much sleep so far tonight. Hoping to sleep later, but it is hard when my ticker is flopping around so bad.

They just came in and pulled out the wires for the temporary pacemaker that were still in my heart. They literally pull them .....about four inches worth.....right out of your heart and through your skin. Not a pleasant experience, but not too painful either. I\'m pretty much free of the tubes and wires now.....yeah! Now we just wait and see what my heart decides to do next. They are concerned about it going back into A-fib and will monitor me tonight and tomorrow. They will treat it with meds if it goes back in, and I\'m praying they will work. I am now free to wander the hospital (with permission), so I can\'t wait to go up to the rooftop terrace tomorrow and actually get some fresh air. I don\'t think I have EVER gone a week without going outside in my 57 years until now. All for now....

WOW......this is a life changer! I really didn\'t know what to expect before I went in, and there have been a few surprises along the way. The biggest and nicest surprise is the pain......it isn\'t nearly as bad as I was anticipating. The first 24 hours I couldn\'t even feel my incision one little bit. I kept waiting for that searing pain I had the last time I had surgery, and it never came. Dr. Gillinov was accurate when he said my pain shouldn\'t be more than a 3 or 4. It may have gone above that for a few hours when I waited too long to take my meds, but for the most part, it\'s been pretty manageable. It is a constant battle of watching what the effects of one medicine will have on another. I take A LOT of meds for a lot of different things, and they all affect one another. It is difficult to keep them all straight. Seems like they add a few more every day. It is day six after surgery, and I am still in the hospital......might be here for a bit longer too. I\'m having some electrical issues with my heart. The repairs to the valve went GREAT, but it is not uncommon to end up with some arrhythmia problems for awhile. I seem to have acquired most of them. I went into A-fib on day 4, but that cleared up just in time so that I didn\'t have to get shocked.(whew!) The last two nights I have struggled with low blood pressure and low heart rate (in the forties), but my rhythm has been good. Still have my temporary pace maker, and I won\'t be leaving here until that gets removed. Maybe Thursday???? I am still in awe of how all of you have been so incredibly supportive of me and my journey. You have all made a difference in my outcome with your positive prayers, thoughts and energy. I did this journal mainly to have a record of it for myself, and to make it easier for people to get information, but by far the biggest benefit has been the emotional support I have received from my friends and family. The days have been long in the hospital, and hearing from all of you is definitely the highlight! I\'m sure I will write more about this later, but that\'s about as much as my drugged up head will allow for now:) Speaking of long days.......a thousand thanks and a huge shout out to Jim and Josie for hanging with me 24/7 since day 1. Unless you have experienced hospital life on a 24 hour basis, you have no idea how grueling it can be. They have been my guardian angles every step of the way, and I love them both more than I can say. Thanks so much you guys! Hope you all have a great day, and BE GRATEFUL! love, Deb

Mom just got back from a long walk in the hall. It went super well, we had to remind her to slow down a couple of times. While she was walking, her heart-rate stayed very steady and did not spike. Her heart-rate has been a little on the low side (50-55) all day, but the rhythms are steady. Her pain is under control and her ability to move around is noticeably better today. They just hooked up the pace-maker because her rate did go into the 40\'s a couple times today. It will only kick on if it goes below 40 One nurse said a-fib is more likely to come back at night when patients are sleeping. So, we\'re hopeful that she keeps this steady rhythm through the night. If she does, she might be discharged as early as tomorrow. If the a-fib comes back, they\'ll probably keep her here and talk about cardioversion again. When mom does get released, our plan is to camp out in the hotel that\'s 1.5 blocks away for another couple of nights. If she\'s feeling good after that, we\'ll make the long trip home.

Moms heart-rate and rhythm have settled into a normal pattern. The Dr\'s think the magnesium and the beta-blockers they\'ve been giving her since yesterday (when the a-fib started) are working and her heart recovered on its own. They put the cardioversion on hold and ordered another EKG to confirm that everything is in fact back to normal. This is very good news, fingers crossed that this holds steady!

Dr. Gillanov (her surgeon) just came in after reviewing her heart-rate and rhythms. He said many, many times that this a-fib is a nuisance and not a problem. The atrial fibrillation is very common and she can go home with it. It sounds like this cardioversion is going to happen sometime in the next few hours. The 9:00 a.m. time is no longer accurate. Dr. Gillinov said if she gets the cardioversion today and her rhythm becomes normal, she could go home as early as tomorrow or Wednesday. Mom lost 4 of the 10 extra water weight lbs yesterday. Her heart-rate (different than her heart-rhythm) is actually down to a normal range again after being very irregular all night. Her heart rhythm continues to be inconsistent.