Amy's Journal

I celebrated my 3 year anniversary of aortic valve replacement surgery one week ago and am doing very well. Reports from my cardiologist continue to be good, but I'm never complacent since I have a biologic valve and will face more surgery in the future... although I'm looking forward to a less invasive procedure next time. Cutting through the tritium plates and cables in my sternum may cause difficulty for the surgeon. I continue to volunteer 2 or 3 days per month in the cardiac wing of the hospital where I had my surgery; working with the Cardiac Rehabilitation Therapists to visit patients who have undergone open heart surgery. I share my experiences, answer questions they, their families or care givers might have about recovery from a patient's perspective, and try to lift their spirits a little. Just as on this forum, it's so nice to 'talk' with those who have been or are going through the same thing. After all, the doctors and nurses know all about the medical side, but they haven't been in the bed! My husband and I also sent our youngest off to college this Fall, so we're now officially empty-nesters! I have been recently slowed down again (at lease a little) after undergoing surgery on my foot. (Going through the list of repairs and maintenance that comes with being over 50!) Healing requires no weight bearing for 6 weeks, and the pin in my toe would keep me from trying. I've got a great 'all-terrain' knee scooter which has kept me going; 3 weeks to go! For everyone in the 'waiting room' and those who have recently undergone surgery, you are all in my thoughts and prayers.

I can't believe that I missed my two-year anniversary post by two days... :-) Wednesday was officially two years since AV replacement and a little over a year since my sternal debridement. I must apologize to all of my heart sisters and brothers for not posting in so long. I have been following your journeys even if I haven't been posting. Looking back much has happened in the past year. Turns out that recovery from the second surgery (September 12, 2017) to repair my sternum wasn't as easy as I'd thought it would be. I had much more pain than anticipated and the debilitating fatigue took a full 5 months to go away. Every time I visited my primary care doctor, surgeon or cardiologist, they all told me the same thing; "Give it time." In January, before I reached that 5 month mark, I began a new part-time job. Fortunately, the hours are flexible, but it took awhile to figure out how to juggle working 15-20 hours and do all the things I was doing before as a stay-at-home mom along with my other volunteer activities. Also, even before the job came along, I had begun the process to become a volunteer at the hospital working with the cardiac rehab therapists. I'm part of a group of four former heart surgery and cardiac rehab patients who visit with cardiac patients after their surgeries before they leave the hospital. We are there to give a patient perspective and answer questions about recovery from major heart surgery - and also to encourage them to go to cardiac rehab when they're well enough. I am only able to volunteer two or three days a month, but it is so worthwhile. This takes me so much out of my normal comfort zone, but I absolutely love it and feel as though I am able to help out in a small way... even if just to listen to them and let them know that it gets better! We had also gotten a puppy mere weeks before my sternum repair surgery, sent our oldest child off to college, had unexpected major home repairs including a new roof, a major water leak, and much needed yard improvements. My heart seems to be doing fine, but I do find myself pausing when I feel some fleeting rhythm irregularity. So far, so good, but I'll find out more when I go in for my checkup with my cardiologist later this month. I am very thankful for another year and look forward to many more.

One Year Anniversary Today is the one-year anniversary of my bicuspid aortic valve / root replacement and aneurysm repair. Tonight we celebrate with a 'pig-out' in homage to my pig valve. It’s been an interesting and very busy year with a lot to be thankful for… I am doing great and am back to feeling like I did at least 10 - 15 years ago; although surgery three weeks ago to debride my unhealed sternum and install metal plates has me sidelined. …for a little while. I look forward to resuming all my normal activities in the next weeks, and am now officially known to my friends and family as the “Woman of Steel(e).” 😊 For those of you facing surgery or have recently gone through it, this website is a great place to be… Not only to read other’s stories and find out lots of great information from those who have already gone through the same things as we face, but to be able to encourage and give advice to others who follow… A big thank you to Adam for your long hours creating and maintaining this forum, and to everyone who is so willing to share real stories and experiences and to encourage others. With all the knowledge that our doctors and surgeons have, there’s no replacing the advice and reassurance from those who have experienced the same things we are going through. Blessings to you all!

It’s been a week since I had sternal nonunion repair surgery. A week ago Monday, I got a call from the hospital informing me that my surgeon moved my surgery from Wednesday to Tuesday. Yikes! I had my list of things to do and a schedule to get it all done. That sure didn't go as planned! There was no sense in postponing until this week, so on Tuesday Sept 12th, I went in and had my sternal nonunion repaired. The surgeon said that this should be a relatively easy recovery since he didn't have to do anything with my heart, but boy I wasn't prepared for the pain immediately after the surgery. My surgeon was surprised when he found that there were segments of my sternum which had healed, but not the whole thing. The CT which diagnosed the sternal nonunion was 6 months ago, and it appears that some healing had taken place since then. Would my sternum have continued to heal on its own? There’s no way to tell, but I do know that the pain had increased over that 6-month period. Craig Wise said that his repair was much more painful than his first open heart surgery, and I would agree. I had very little sternal pain with my first OHS, but this time I was in recovery for nearly 5 hours trying to get the pain under control. Wednesday, I was moved to the cardiac step-down unit (even though I didn’t have anything cardiac done) and the day was pretty much spent keeping my pain under control. I ended up going home on Thursday in the afternoon. My surgeon ended up using 3 tritium sternal cable plates that should keep things very stable. A week out from surgery and I find that my recovery is so much the same and so different from my first OHS. I must be careful how I move and I’m still on pain meds several times a day to keep the pain level down and I find that I’m sleeping a lot, but I feel so much better physically than the first time around. I’m not having to deal with a heart recovering from its own trauma, just an ‘orthopedic’ surgery… So, was the surgery worth it? I’m hoping so. It’s still too early to tell. Here’s a link to the plate system used in my surgery. http://www.medigroup.com.au/tritiumscp

The surgeon got me onto the schedule really quickly to repair my sternal nonunion. I am scheduled to have the repair done locally on Wednesday Sept. 13th... Just a few days away. My cardiologist squeezed in an echocardiogram at his office this morning to check everything out from my AVR/aneurysm repair from last October. It's been almost a year since surgery and I hope that everything looks ok... I suppose that if there's anything that needs fixing, the surgeon can take care of it while he's got the hood up... My husband has been able to get approval to work from home for at least 2 or 3 weeks, so that will help tremendously. He has a lot on his plate right now, but he is always there for me and takes great care of me! I feel truly blessed!

It’s been several months since I found out that my sternum didn’t heal after open heart surgery last Fall. I had been hoping and praying that it would heal on its own, but it hasn’t. In fact, I’ve been having increasing pain which limits many of my normal daily activities. Fortunately, this is a relatively rare complication and if you're facing OHS, don't worry, it probably won't happen to you... My husband and I met with the surgeon this past week and discussed options and the path forward. After looking at several options, it looks like the best is repair surgery. This involves opening the chest again, removing the existing wires, debriding the edges of the sternum, and securing it with plates… Pretty much the same surgery that Craig Wise had almost two months ago. I haven’t heard back from the hospital yet, but we’re looking at a surgery date in the very near future. We want to do this sooner rather than later to take advantage of medical deductibles having already been met for the year. Recovery is 6-8 weeks (again!) which I’m not looking forward to… Unfortunately, my husband is not able to work from home as he did last Fall, and my son isn’t here to chauffer my daughter wherever she needs to go. Even with this repair coming up, I am very blessed that my new aortic valve and anerysm repair is doing well.

It’s official… I have sternal non-union. I have seen both my cardiologist and my surgeon, and the surgeon doesn’t want to do anything about it for at least a year. He says that each side of the sternum healed, but not together. The wires are holding and my sternum is somewhat stable, but I can feel it move. Many people don’t have any pain with this condition, but I do. It is painful if my husband gives me more than a gentle hug, if I lay too much on my side when sleeping, if I move the wrong way when reaching for something, or if I do housework or work in the yard. (I think I’m also getting poked by one of the wires) So that means I’m in pain every day… Surgery involves opening the incision, shaving the surfaces of the sternum, and then bringing the halves together using plates and screws. Recovery is 4-6 weeks which doesn’t sound fun… again… I feel so much better now that my heart is fixed and after 7 months I want to do all of my normal activities, but right now I feel so restricted. Even with this complication, I feel extremely blessed to have my heart repaired and be able to do so much more than before surgery. It helps me to keep things in perspective knowing that there are many of you in this community who have gone through much worse than this and remain positive and encouraging. Thank you all!

As life becomes normal again, the time between updates stretches... It’s been six months since aortic valve and root replacement and aneurysm repair. Despite the expense, my husband and I decided to bite the bullet and have me go through the entire cardiac rehab program. I started three days a week in late December and graduated almost two weeks ago, having made great strides in my recovery and fitness. One of the young therapists reviewing my progress commented that he would find my ending workout challenging. It was worth it… (It also got me close to my insurance deductible for the year. 😉) If you are considering cardiac rehab after surgery, I highly recommend it. It kept me exercising consistently and I pushed harder knowing that I was being monitored. Even though I had 10 weeks of recovery before beginning rehab, it was tough going at first. In my first rehab session, I thought I was never going to make it two minutes at the lowest level on the elliptical machine, but by the end it was one my favorites. I’ve had a few blips on the radar with some medication issues, atrial flutter and a larger concern with some recent, increasing sternal pain. My cardiologist ordered a CT scan of my sternum last week to check it out, and it looks like it didn’t heal properly. The radiologist’s note is, ”Sternotomy is still visualized and there is no bony union.” I haven’t heard from my cardiologist yet, but he should have also received the report today. I don’t know what the path will be from here, but from what I’ve read, it may require more surgery to get the sternum to heal properly. Has anyone else had this problem? If so, what was done about it? I had hoped that after six months it would be smooth sailing, but apparently this is not to be… I do feel incredibly blessed to have found this site and have the support of so many who have and are going through the same things.

I have a question for those on metoprolol. I'm almost 6 months out from aortic valve replacement and aneurysm repair and had an appointment with my cardiologist this past week. At my previous appointment he had me weaning myself slowly off metoprolol tartrate, and I've been having some PVC's and some atrial flutter with the lower doseage of 12.5mg daily. I had been taking half of that dose in the morning and half in the evening. He wants to keep me on metoprolol for awhile since my heart is still irritable, but he upped the dose back to 25mg once a day and changed my prescription from metoprolol tartrate to metoprolol succinate. He said that the metoprolol succinate is a longer lasting formula and should be better for controlling the rhythm problems... The only thing is that since I've been on the other formulation, I've felt awful. Incredibly tired, nauseated, and unmotivated. Metoprolol tartrate didn't affect me this way, even at double the dose. Just to be sure that I wasn't coming down with a cold, I've given it most of a week and still feel lousy. Has anyone else had this reaction to succinate? Obviously, I'll talk with him next week, but I'm just curious if anyone else has felt the same way on this drug. Any input is welcomed!

Merry Christmas to everyone. I hope those who are on the schedule for surgery in the next days and weeks were able to enjoy Christmas before undergoing your procedures. I looked at the calendar today and realized that it’s been four weeks since I last posted an update and twelve weeks since my surgery. Preparations for the holiday have kept me busy. I make maple candied walnuts as Christmas gifts every year to give our friends, and everyone was surprised that I actually made them this year. It’s physically difficult to stir them in the final stage as well as wrangling heavy pots. I usually have no problem, but I’ve had pain in my right chest muscles since surgery and didn’t know how I’d fare. For the first batches, I recruited my husband and then my daughter to help, but when they kept not being available on future days I became impatient and wanted to just get them finished. I ended up making them for about five hours straight one day just to get them off my list. I did better than I expected, but was totally wiped out the next day. I also was ambitious and made a whole bunch of cookies this year… Hopefully things will slow down just a bit now that the new year approaches. I also was finally able to get the insurance company and hospital to coordinate and began cardiac rehab last week. It felt good to begin exercising again knowing that my heart was being monitored and is doing fine. I had three sessions last week with another three scheduled this week. I had hoped to get more time under my belt before the end of the year since we’ve met all our out-of-pocket maximums for the year and the insurance covers the entire cost. I’ll have to start over with deductibles on Jan. 1, so we’ll see how everything shakes out. If it’s too expensive, I may only get one or two weeks in during 2017, but I’ll be glad to get what I can. I feel truly blessed to continue recovering so well and feel better than I did prior to surgery.

Time is starting to go by a lot faster now that the holidays are upon us. I hope everyone had a very nice Thanksgiving. I’m 8 weeks post-op, am feeling better all the time, and am doing more ‘normal’ things every day. After 5 ½ weeks of wearing the heart monitor, I finally got rid it a little over a week ago. I’m so glad to not have that silly thing attached to me 24/7! I also started to drive again… Yay! I’m free!!!!!!! Does my reaction give away my enthusiasm? I’ve said before that my biggest obstacle is patience and I love getting out and doing things on my own. I still have some pain on the right side of my chest, and it hurts if I cough, laugh, sneeze, or park the car, but it’s tolerable. My husband and kids called me ‘T-Rex’ right after surgery since I couldn’t reach up to get anything off a shelf, open the laundry chute from upstairs (that one didn’t make me unhappy…) or get dishes out of the cupboards. My T-Rex days are behind me and I’m now able to reach most everything. I had my first post-surgery echocardiogram today along with a visit with my Cardiologist. My appointment went well, with my cardiologist even using the word ‘super’ when reviewing my echo report. My arrhythmia is gone, I’m not showing signs of Afib, and I’ll be able to start weaning myself off Metoprolol in a couple of weeks. The best news is that the Left Bundle Branch Block (LBBB) which showed up right after surgery has resolved itself. The cardiologist said that the nerve bundle may have been nicked or it could have been inflammation from the surgery. This is a common risk of aortic valve replacement that I didn’t know about prior to surgery. Nevertheless, it’s gone and I am very pleased. I love the fact that I don’t have to stand and catch my breath after going up a flight of stairs anymore. I have a referral to cardiac rehab and should be able to begin soon so I can focus on regaining my strength and stamina. For those waiting on surgery this probably won’t make you feel any better, but my fears about surgery were much worse than the actual experience. Don’t get me wrong, it’s not easy by any stretch of the imagination, but it wasn’t what I feared it would be. My thoughts and prayers are with all of you who are facing surgery soon and with those recovering. Blessings to you all.

One month since surgery. Wow! It’s amazing what modern medicine can fix, and how the human body can recover from major surgery so quickly. It seems like forever (mostly because I’m stuck at home unless someone takes me somewhere), and at the same time it seems like just yesterday. I’m feeling a lot better now that my heart rhythm is getting closer to being normal. Still a lot of PVCs, but I don’t feel them as much as I did before. My heart would feel like it was going to come out of my chest when it would pound and ‘bound’ while sitting and relaxing, but that isn’t happening anymore. I still have to wear the heart monitor and will hopefully be rid of it in a week or two. I thought I’d totally shaken the low-grade fever, but it seems to come back every day or two. Not bad, but enough to make me feel pretty yucky. Neither my surgeon nor my cardiologist seem concerned since the fever stays in the 99’s, and only occasionally gets over 100. I also thought a rash on my chest could possibly be shingles, but I think it’s just a bad reaction to the glue they used on my incision. I came down with a case of shingles about two years ago and this is a little different, so I’ll give it a little time to settle down. I’m able to do more around the house all the time, but it will be awhile before I can do a marathon cleaning day, or lots of cooking. I still need naps if I’ve been very active in the early part of the day. I’ve been regularly walking around my neighborhood and am looking forward to the weather finally cooling down. We had a few days in the mid 90’s last week and are looking at high temps in the 80’s the rest of the week. I’m getting more and more anxious to be able to drive again. There are so many things I can take care of quickly by myself that now have to wait until the weekend or until someone is available to do it. That’s just my impatience showing… Overall, my recovery is going well. I just need patience to not push too hard too fast! I am very grateful that one month after surgery I feel as good as I do and can do so much already! Thank you all for your prayers and encouragement.

I've been home two weeks already. In some ways it seems like forever, but I still marvel at how much I've healed in the 2 1/2 weeks since surgery. I had my first appointments since I came home with my cardiologist and surgeon yesterday. Both seemed to think that I'm healing well and that everything looks good. I'm still having a lot of PVCs while at the same time having an elevated heart rate. I'm on very few medications and haven't needed pain meds for almost two weeks. My low-grade fever seems to have gone away, hopefully for good. I'm on a monitor 24 hours a day for three more weeks, and I'll be eligible to begin cardiac rehab when the monitor is off. I also am looking forward to being released to drive. That's probably the most difficult for me... I'm so used to chauffering my kids around and running errands, that being stuck at home is rather frustrating.

I haven’t posted a journal in a while and thought it is about time. My recovery is going well. I’ve been very tired, however, fighting off a persistent low-grade fever since surgery. I was prescribed an antibiotic by my primary care physician on Tuesday for the fever and redness around my chest tube site, and yesterday my temps finally came down to normal consistently. I came out of surgery with a Left Bundle Branch Block (LBBB) which is causing some arrhythmia; nothing serious though. I had no idea prior to surgery that this can be a side effect of aortic root replacement. It goes away in some people and I’m praying that it will in me. To be safe, my cardiologist has me wearing a telemetry unit for the next month so he can track more closely what’s going on. I feel very fortunate that I haven’t needed any of the heavy duty pain meds since last weekend. Ibuprofen and Tylenol for the fever have been sufficient for any pain I’ve been having. I did, however, swallow some of my dinner the wrong way last evening and thought for sure that I’d need pain meds to sleep judging from how sore my chest was after the coughing fit was over. Turns out, I didn’t. Am I sore? Yes, but not bad all things considered. In fact, I was in much more pain for much longer after an auto accident 10 years ago. I have been walking several times daily in my neighborhood with my husband, doing more small things around the house, and he even took me on a short trip out to the grocery store on Wednesday evening. I am very thankful to be on the other side getting better every day.

Thank you everyone for your prayers and words of encouragement. I did make it home by dinner time. The 45 minute drive home, including the stop at the pharmacy, was exhausting. I sat in the middle row of our minivan clutching my heart pillow to minimize the bouncing and rocking. I was surprised at how sore I was by the time we got home. A friend from my church had brought a meal over (thanks, Cinda!!!) and my Mom was there too. After eating and visiting for a bit, my Mom went home and I had plans for a shower and then sleep. My husband walked me back to the recliner in the bedroom where I wanted to sit for a few minutes first, but as soon as I was in the chair with my feet up, I was asleep. I ended up sleeping all night, only waking a couple of times for a pain pill. My husband has been taking such good care of me today, making sure I got a good breakfast and meds. He also remembered to be monitoring my temp as I have been running a low grade fever in the mornings. He also helped me to finally get a shower, and settled back into the sleeping recliner. That shower really wore me out. I'm now just hanging out with a nap in the near future. I think a short walk outside will be in order after I rest for awhile. I have to keep reminding myself to take it easy... my family will also make sure I get plenty of rest and care.

This is Amy posting today. Things have improved significantly yesterday and today. I took three walks yesterday and had a steady stream of visitors, including a wonderful visit from Phyllis. The surgeon has been pleased with my progress and said I'm well enough to go home today. I felt really good yesterday, but had pain during the night. A little more tired today, but doing well. Paperwork is being processed right now, so I should be able to have dinner at home with my family tonight. I want to thank everyone for their thoughts, prayers, and encouragement. I know that I have to take it one day at a time and take care of myself. I'm so glad to be on the other side and on the road to recovery.

From Ken: Sorry to be such a slacker, but my brain was dead after yesterday, shuttling back and forth to the hospital while trying to work remotely and keeping up with the kids. But then I remember I have it easy compared to my lovely wife... ...who was indeed moved to a new room yesterday morning, something in-between ICU and ordinary and designed to accommodate heart patients. She is now down to just the IV and chest tube, although they had to redo the tube due to an air leak. Remaining upright and standing is getting easier. Amy took a very long walk with the cardiac rehab guy yesterday, and didn't realize she was carrying on a conversation at the same time. Her cardiologist had to track her down, too, joking that she'd run off on him. But last night the weight of, well, everything came crashing down on her emotionally. The reality of all that has happened in the past three days, the pain both old and new, and certainly the frustration of still being somewhat helpless made for a lengthy session with Kleenex. As of this morning she is doing much better, and hopefully this day will be encouraging with more progress, and maybe a little confidence. As I told her last night, "God has brought you this far, and will certainly take you the rest of the way -- if you need help, ask Him." That's all for now; thanks for "listening."

From Ken: Yesterday was a long, busy day for Amy, without a whole lot of rest. Most of the tubes and such are gone, but sadly sometimes their removal meant lying flat, or worse, head down, and that brought out the sternum pain. Ouch! Well, "ouch" doesn't really do the feeling justice, I suppose. Suffice to say there were good times and bad. We enjoyed visits from Karen and Sally... thanks so much for coming by! The cardiologist dropped by, too, and was pleased with her condition and progress. It wasn't until very late in the day that Amy was able to tolerate standing for any length of time before the blood pressure bottomed out, so the transfer to an "ordinary" room was postponed. As of this morning, Amy tells me she actually got some rest last night, and took a lap walking around the nurses' station. Progress! I expect she'll change rooms today, and that things will continue looking up. And maybe she will feel up to filling you all in herself later today; if not, I'll be back!

From Ken: Amy is looking a lot better, and has mostly shaken off the cobwebs. She was up at 4am for a "bath," then into a chair for a few hours. Ice chips are going down easy. There was a valiant attempt at walking, but she's not quite there. She has been dutifully hugging her pillow and coughing, plus using the respiration aid to keep her taking deep breaths. It hurts, but OxyContin seems to be most effective. The tubes are slowly coming out, but there are several yet to go. Vitals and such are good, so no worries thus far. She's getting a little rest now, and may try to post herself later today.

From Ken: Well, it's a quiet night in ICU, and all continues to be well. The surgery was very successful, and could not have gone much better. At the moment she still has the breathing tube, but the monitors seem to indicate they can pull that out within the hour. As expected, she has wires and tubes everywhere, and the machines are all dutifully blinking, clicking, whirring and beeping. She only needed the one unit of blood she donated, plus a clotting compound. Blood sugar was a tad high, but easily managed. She is slowly coming out of the fog, and will definitely feel better breathing without obstruction. Looks like ice chips are coming soon after. A long day, and quite the ordeal, but in a few weeks time this will (almost) be forgotten. I'll stay until I know she is more comfortable and breathing on her own, then run home for a few winks. But for now, all is well, and God has been faithful and merciful to us. Thank you all for your prayers and encouragement.