Susan's Journal

Meredith Bray  I know a tissue valve patient who had clicks. I don't think it's awful unusual, still ask your doctor though.

Pat Bluemel  I had clicks with my trifecta- Especially with deep breaths, I asked my cardio at my echo and she was not alarmed as things are still healing. I just noticed after reading your post that I'm not clicking as much however.

  Excellent recovery, Susan! God is Good! I have a pig valve, as of seven weeks ago, tomorrow. So far....have not noticed a clicking sound. Everyone is different. I agree with Meredith...ask your doctor.

Penny Prichard  Great news. Glad you are doing well. I'm still have high blood pressure and rhythm problems. Meds don't seem to be doing much. I'm seeing cardiologist Friday again

Jennifer Miller  I put off cardiac rehab, thinking I could do it myself, but it's just not happening. Going to set up my rehab tomorrow, at 4.5 month post-op. You inspired me! ☺

Tammy Pilcher  Susan, I think for me, it was around 6 to 8 weeks that I felt "normal" again. But, like I said in a post to Tammi earlier, my problem is remembering that I still need to be careful in what I do. Just because I feel like I can do something doesn't mean I should. I've hurt myself a couple of times by doing things that my body wasn't ready to do. Best wishes on your recovery!

Terrie Syvertsen  Susan-I was thinking back to the 4 week period of recovery and read my
notes in my daily journal. In it I am frustrated because I am so tired still and don't seem to feel like myself yet. You say your hemoglobin is still low and you are a little weak. Your oxygen is not what you feel it should be and all of the above things are just part of the recovery your body is going through and you will pick up more energy as the body has gained strength which is different for each of us(frustrating). You are still early in your healing process and the hard thing to be/do is be patient with yourself. Just because you have a mini incision doesn't mean that inside your body is adjusting quickly to all of the trauma it has gone through. I bet you will
feel quite different in a couple of weeks! Hope so. Take care and Happy Healing!

Dan D.  I haven't had surgery yet, so can't tell you about my recovery. It sounds like things are going well in some areas, but remain frustrating in others. Everything I read suggests that people tend to be much improved and closer to their ideal during or after rehab. We all want to recover at a pace that is as good or better than others. Hopefully, you can overcome the frustration, be patient and you will get where you want to be very soon.

Susan Bach  I think you all hit it on the head, I'm being in-patient and frustrated. Normal emotions I suppose. Tammy's right, I might think I can do more things, but I need to be careful . I just needed to vent. Seeing my Cardiologist once every 3 weeks, doesn't cut it. Thank Goodness for this website !! I've learned more from this, than any doctors could tell me !

Eleanor R  I remember being tired and weak at week 4 and even week 6, and I recall that little steps of progress were not so noticeable unless I stopped to think that I was walking upstairs with more speed, or able to open the patio door more easily. We miss small signs, I hope you begin to have them, and notice them too. Certainly cardiac rehab was a gift and I came away much stronger and more confident. I wish the same for you.

Lewis Garlisi  Cardio rehab seems like the place for you since they can monitor some of those issues while you exert yourself. It sounds like your healing process is going well otherwise. Although I was / have been progressively healing, at 4 weeks I felt far from being "back to normal". Those issues are best addressed by your cardiologist (and cardio rehab nurses) though.

Tim Goff  Right there with ya Susan. Im 4 weeks out tomorrow. Scar is healing well, not much of any sternum pain unless i reach outside of the zone to pull or pickup something. My heart rhythm is another story. I have plenty of irregular beats according to the home monitor and my pulse continually runs above 110. I've let the dr's know and they dont seem to be the least bit concerned so I have taken that approach too. I am eating well, resting, staying away from stress, and walking twice per day to get some wind in my sails. I think we just have to do our best to control what we can and let the medical folks let us know when we are off track. Hang in there!

Nancy D  with a low hemoglobin you are going to be easily tired and weak. Depends how low, but some people here had to have a transfusion or two, others on iron or iron rich food. Four weeks my issue was LOW B/P, and dizzy and week, and I suffered a fall striking my ribs against the bedside table. This was a real set back for me, and I had similar frustration that you are talking about. I felt like I was starting all over. But, it does get better. Hang in there, keep having your blood count checked, and let them know how you are feeling. Take good care!

Meredith Bray  I was taking naps for almost 6 months! And you'll never be "normal" like you were before. You'll have to define a new normal, a better normal. Once you start rehab, you'll sense greater improvement. My surgeon, cardiologist, and GP all told me it would be a year before I wasn't thinking about the surgery every day. They were pretty close. My energy levels are far beyond what they were pre-op. And I still get twinges when I reach "out of the zone" (I like that, Tim Goff!). It might not feel like you're improving each day, but you sure are!

Heather Wilson  My surgery was 3/24 and I am still tired too- you are in good company. I struggle with stairs and hills (I was active before having symptoms with my AS). My surgeon said expect about a year to feel totally back to yourself...tell us how rehab goes next week. Good luck and hope you are feeling better soon.

Pat Bluemel  No Afib! I hope it stays away, if you get another bout call your MD. I drank (and still drink) one Gatorade a day and it keeps my PVCs at bay. Take a nice hot steamy shower first thing in the morning and it helps with the sore and stiff get out of bed in the morning aches and pains. Did they recommend iron for the low blood counts or anything? I started iron pills and more red meet for a while. I felt low from week 3 to week 5, cardiac rehab and getting my blood counts higher were key in me not feeling so low. Hang in there, it gets better Susan.

Adam Pick  Hey Susan, Sorry to hear about the Afib. As you may have seen, Afib is somewhat common after surgery. If you are interested, here's a video about that. https://www.youtube.com/watch?v=L73AQaCS3do Take it easy. One step at a time.

Adam Pick  Also, I too had anemia after heart valve surgery. Here's more about that. https://www.heart-valve-surgery.com/heart-surgery-blog/2008/09/21/anemia-anemic-after-fatigue-pale-replacement/

Susan Bach  Wow, thank you Adam for that information. You really made me feel so much better about my blood count and A-Fib, PVC's. I was becoming depressed, thinking I was becoming weaker than before, and what does this bring ? Am I in danger? With your info, I now see it's common, And I think I can cope now.
And Pat, thanks for the scope on Gatorade, just had my daughter go buy me some. And thanks for being honest and telling me week 3-5 was your toughest, cause it is for me, too. I guess low hemoglobin and weird heart beats are all part of it. I will use this info to calm down, and realize its all part of recovery.

NO A-FIB !!! NO-AFIB !!!!!! Hahahaha

Duane Beeman  "Three weeks post op". Those are pretty magical words. And you think YOU"RE depressed ?? I got two months to sit here and think about what's coming. "Three weeks post op" are words I can't wait to to speak !!! Now look what you've done.....I need a drink again......darn.

Susan Bach  Hey Duane, I was YOU, from Sept 2014, when I found out I needed Aortic Valve surgery to save my life, until March 18th, day of surgery. I, like you, had months to think about my up-coming surgery. I really think waiting is the hardest part. It plays with your Psyc.
The best thing you can do, is enjoy your life, as you do, get in the best physical shape you can. Be sure to ask everyone here, who has had surgery , what to expect after you get home, and how to prepare your home.
I'm in the 3rd week of recovery , and I'm told week 3-5 are the hardest.
And not being able to drive is a bitch. I miss my freedom. but thank God for this website, it has helped me more than I can ever say. It's a blessing.

P.s. if you enjoy a drink now and then, do it now. The thought of alcohol , the smell, or taste, will make you sick after surgery. I hear you don't require the taste for it at least 6-8 weeks after surgery. Bummer, huh?

Tim Goff  Susan,
Sorry to hear you are still experiencing sternum pain. Are you sleeping flat or raised on a wedge or pillows? I have been using a wedge pillow that I think has been pretty helpful. Though I haven't had any pain issues like that my heart rate is still running 100-110 and though irregular it doesn't seem to be in AFIB. I like Pat's gatorade suggestion and will try that. Walking has helped my both physically and mentally so I hope you have been able to do so too. We are a day apart on the start of our journey and I look forward to hearing good news from you.

Duane Beeman  Susan: As I said in previous posts, me losing the taste for alcohol will rate among the great scientific mysteries and miracles of all time. In spite of that particular vice, I am nonetheless in great physical condition and I'm ready to do this thing. No fear........yet.

  Susan, a heating pad on my mid to upper back while I slept in my recliner was night and day for me, especially when I woke up. I could not believe the difference. It really helped. Hang in there. :) You are doing great.

Pat Bluemel  Also, what are your doctors (and insurance) saying about cardiac rehab? I cannot evangelize it enough. I dreaded the thought of it at first and delayed it one week
(week 3) as I was down in the dumps. Now, I walk out of each session full of endorphins, feeling alive and positive. And I have grown special bonds with other patients who get it. It also helps with my aches and pains.

Gerald Schaffer  I've read several posts here and on other support sites and enough people reported afib after the replacement that I spoke to my cardiologist who confirmed it's common and typically goes away on its own.

Susan Bach  Pat, yes my Cardiologist and insurance has approved me to do Cardio Rehab. so you recommend it ? I should start it in a couple of weeks. Trying to get my Hemoglobin up, before I start rehab, taking Iron pills. Plus, I still have not been cleared to drive yet. Tell me about what goes on in Rehab? I'm curious, I know it will get me back into shape and I sure could use help with my muscles , they ache so bad.

Pat Bluemel  YES! 100 times yes! They don't push you to do anything you can't do, and they support you all along the way, they hook you up to monitoring and give you daily exercise prescriptions that you have the goal of achieving. I flew back from Hawaii on a red eye and was so sore and achy and tried to talk myself out of rehab this past Wednesday. I went regardless and walked out feeling so great. Yesterday I really pushed myself and felt great after, this morning - not so great, but I know it's par for the course of healing. The things rehab has done for my "blues" are the biggest benefit. My outlook on this whole thing has changed for sure. Give them a call and get signed up for the day after you can drive a car, you won't be sorry. OH and not to mention the camaraderie. You will meet new friends! Do it!

Bob M  Amen! Home is where your fixed heart is. A dedication song for you Susan and our awesome Community. The song is "What Faith Can Do," by Kutless. Here is the awesome refrain: "I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do."
God bless and rise up!

Pat Bluemel  Great news Susan! Looking forward to details. Now take it easy when you get home and don't overdo it. Happy healing.

Lewis Garlisi  Congratulations Susan. Its a great feeling being back in your own environment. Now its all about recovery. Be patient and you will see things getting back to normal before you know it.

Terry Shermeister   So nice to hear from you Susan! You were the first one that I posted when I learned about my Mitral Valve and need for the surgery. I'm very grateful for you success and the fact you are home. I related to your concerns before the surgery and your comment about how glad you are that you had the surgery. Yippee! Look forward to hearing more about your successful recovery.
Terry

Jennifer Miller  Hi Susan! I just wanted to check in to see how your recovery at home is going. I remember those first couple of days at home, but they began to blur together after that. I hope you're resting, eating well & cuddling with your fur baby! 🐕

Terry Shermeister   Hi Susan and thanks for your encouragement. It's nice to see your positive attitude and outlook. Just what the Doctor ordered. Terry

Tim Goff  Susan we are all a little Irish today and your luck will go far beyond surgery tomorrow. Please don't worry we are praying that all goes well for you.

Linda Whitney  Susan, I have been meditating every day for a couple months, and I still can't quiet my mind. You will be able to concentrate on your healing in a matter of hours, and the weight of the colossal anxiety will be in the past. Check in with us and let us know how you are doing when you are able to!

Cheryl Batzing  Susan, yes, God is good and great! Prayers headed your way heart sister! Can't wait until you are on the other side and recovering.

Pat Bluemel  Susan. All normal questions and worries. I'll give you my experience. Don't worry about your pup. She will be fine. My dog and cats slept with me on return home from hospital. You just have to watch your incision. My dog jumped on mine 2nd day. That hurt:). Side sleeping was uncomfortable for 3 weeks. Simply because getting In that position feels odd on your sternum and you want to avoid moving it too much. I just started side sleeping again and it's dreamy. You get used to sleeping on your back as you are too tired to fight it:). You might get insomnia. That goes away. It takes a few days to stop feeling like you should be doing something. Then you just go with the flow. Allow yourself to be ok just being and healing. By week two you'll be able to do little things. At week three I was doing laundry - very carefully. Time is suspended and racing at the same time. You'll be quite surprised at your progress and little wins that come about each day. I got the blues. They aren't bad. I just need to be patient and keep my body moving and each day is better and brighter. You'll do great! Ask if you have more questions.

Elaine Foster 
I am 3 months out from AVR. You will need to sleep on your back, side is definately uncomfortable for quite awhile. For me it was at least a month, and then for only a little while at a time, and I had a mini- sternometry! For me, the pain was not terrible, take what pain pills you need, but if they are narcotic--- take stool softener !! Very necessary !! You won't have much of an appetite, but try to eat protein, or have protein shakes on hand. Naps are important too. I didn't have any big issue with sleeping, but everyone is different. I found that I couldn't concentrate to read, even though I like to. But it wasn't that big of deal either. It takes a little while to get back to yourself- but let me tell you this far out- it was so worth it!! I can walk with no shortness of breath and feel very good. If you think of anything else you want to know, feel free to ask, or read my journal. Oh, yes, a bed wedge pillow was helpful, as laying flat for a couple of weeks was not comfortable. I slept in bed from the first night, but needed help to get up. I could get out if chair and recliner on my own.

Greg Johnson  Hi, you still have a week to get prepared. I have been home for 4 days now and there are some definite things I would have done to get ready before hand. Without my wonderful wife taking care of me, running errands, getting crap, taking stuff back that didn't work, etc I would have been lost.
1. Get a good sleeping chair / recliner / sofa. You will want to sleep on your back, you will need to be able to get out of it without using your arms. Practice this. Cross your arms in front of your chest and try to get out of whatever it is you have selected. A powered recliner is probably the best option.
2. Get an array of pillows / memory foam pads. (I used memory foam dog crate pads :) These you will use to change your position (both head and legs) in the chair as the same position for too long causes almost as much muscle and bone pain as the incision. You will also use one for hugging when you cough, and cough you must to get your lungs clean and clear from fluids.
3. Get some nice cheap cotton blankets. I got hot, sweats, cold sweats, even with the room temp. always the same. I wash them almost every day.
4. Get a remote control light. Something you can turn on and off from your chair.
5. A large dual (am/pm) weekly pill box. This makes management of the array of pills you will be taking much simpler.
I thought I was going to spend a lot of time reading, but I also found that I could not concentrate for more than a page or two at a time. Medication I guess. I don't know how long any of this will last as I am right in the middle of it now, but I can begin to see the possibility of sleeping in a normal bed in a week or so from now. That will be great. Good luck and once it starts it goes pretty fast and soon you will be looking back and on the road to a speedy recovery!

Pat Bluemel  Greg does bring up some awesome points, it's funny how quickly you forget. I am 4 weeks out and can 100% endorse a recliner if you can borrow or rent one, and the blankets - That's gold right there. The sweats were annoying but they do go away soon enough.

Susan Bach  Oh my, you guys have no idea how you have helped me, both in information, but humor , and support. Made me tear up . We are all in this together. I will have more questions to come this last week, before surgery. But the real truth is, I know I will survive this surgery , but it's the recovery and possible risks in aftermath that scares me. Everyone is different . But just knowing your out there , somewhere, makes me feel so good. Love all of ya

Tim Goff  Susan it is amazing how so many here have similar thoughts and fears. Most of mine through this process has been similar to yours, the aftermath risks and "mortality" factor. Wishing you peace and that all goes well with your surgery.

Penny Prichard  I got an electric recliner from rent a center. Not too bad in price. Very comfortable. I've done relaxation techniques for years. There are lots of CDs with soothing music and sounds. If you have an iPhone there are some really good apps for it. This does reduce any anxiety you may have. Keep busy

Bob M  I pray that this calmness will stay with you throughout your surgery and recovery. God bless and rise up!

Robert Osmachenko  "Talking about my generation". Yes, this is a mind blower and you must do it. Stay calm for everyone is behind you and supporting you.
Keep on rockin in the free world! Bob O.

Lewis Garlisi  Susan, sounds like you've set things up with a good team at a good hospital. This is a major event, but a positive one for you as well as all of us, since our alternatives are worse. I understand. I was where you are only 3 mos. ago. Your team will get you through the surgery, and you can work on your recovery so that you will have many more quality years! Try doing fun things before the 18th. Best wishes. You are in my prayers.

LaDonna Mangile  We all (already done or still waiting) will think of you and pray for you to have a successful surgery and uneventful recovery.

Pat Bluemel  In no time you are going to be looking back thinking - I CAN'T believe I had open heart surgery. It all goes so quickly. Enjoy your weekend and be good to yourself.

Susan Bach  Thanks Peter, you have no idea how happy I am to be part of this wonderful support website, full of lovely compassionate people.

Terrie Syvertsen  Hello Susan and another welcome to the site. I live across the "Bay" from you in Manteca, Ca. and also am in the recovery side of Aortic Valve replacement surgery. There are many people here who will be joining me in letting you know you came to the right place for support and will be a great source of information. Do you have a date set for surgery yet? Will be checking for updates to your post! Later!

Penny Prichard  Welcome to the group. It's nice to see a few from California. There are a lot of great people on this site

kathy lesnau  In some respects" the waiting" is the hardest part. Focus on what your needs will be for recovery, see yourself on the road to recovery. Good Luck!

Edith Dim  Welcome, Susan. I'm so glad that I read Adam's book, and found this wonderful group, too. I think that fear is normal as we await heart surgery.

Jim Kelly-Evans  Welcome, Susan...I'm in the last week of five and one half weeks of waiting...it's tough but probably the worst part is the waiting. Best wishes on your upcoming surgery.

Tammy Pilcher  Welcome Susan! Prayers and best wishes for you! I'm 3 months post op now and doing great! You can do this and Father God will help you! Isaiah 41:13

Bill Cherry  Hi Susan, I'll join in also. I had aortic valve replacement on Jan 12, 2015. It was my first time in a hospital for any reason. I am now coming up on my 4th week anniversary post op. and have completed 1 week of phase II cardiac rehab.
I feel fine, actually feel like I have a new heart. It's amazing that things like this can be fixed and the person return to useful life in a months time. I probably cannot alieve any fear you have, but the after part is well worth the operation.

Nancy D  The fear subsided and calm replaced it once there was a plan in place, date, time, surgeon, hospital, choice of replacement if needed. The waiting, wondering and decisions are tough, but then it falls into place, and with prayers of many and support of many I went in that morning, calm and collected, and I felt good about it all. Wishing you peace and calming in the days ahead....Take good care.

Cheryl Batzing  Glad you are here, Susan! We're at one stage or another on this heart path. I had mitral valve repair surgery Dec. 16 and am recovering well. Ask many questions! We're here to help. Praying for you now, Susan.