Denise's Journal

Nancy Surprenant Takahashi  Good question, I glad you asked. I will be due after my surgery too. The very first time i went into A-fib was during the prep. Did all the prep and went to the hospital for my colonoscopy and I was in A-fib they sent me to emergency room and I never got the colonoscopy after all that....

Marie Myers  The Coumadin will be of consequence if the doc needs to biopsy something during the colonoscopy. Your cardiologist and gastroenterologist will let you know how your Coumadin needs to be handled for the colonoscopy.

Kate Watson  How are you, Denise? I actually don't know the answer to this but have wondered it myself. I feel nervous by the idea of having one while on coumadin but I'm presuming they do it all the time.

Denise Campbell  Hey Kate. How are you. Do you come on here often? Are you back to normal things? I’m going tomorrow to get my INR check so I’ll ask my coumadin lady what she thinks. Then I’ll make appts for consult.

Michael Cline  Denise, On-X claims less anticoagulation meds. Is that true and is it a major lifestyle change taking the warfarin and going to blood tests?

Denise Campbell  Hi. Lessbif it’s for aortic valve. Not mitral. It’s been an adjustment. You need to be consistent with vitamin K intake. Bruising hasn’t been too bad. It’s a pain getting blood checked every two or so weeks. But I probably won’t have to have replacement like I know would happen if it was tissue valve replacement

Denise Campbell  Hi Michael. Sorry I didn’t proof read. I meant to say I think the Inr numbers are required to be lower with an on-x if it’s for the aortic not mitral. So that would mean less warifin too.

Leslie Bakos  It took me a month for my bruises to go away from the injections of coumadin I got in the hospital for afib.

Kate Watson  Hi Denise, how are you feeling these days?! I have bruises constantly now since being on Coumadin, but I am very clumsy so I often bump into things Sometimes I get huge bruises and don't know where they came from, or I get bruised from just scratching my skin too hard. I think it's just par for the course unfortunately, but if it's just gotten worse lately I'd touch base with your ACC. Has your INR been under good control?

Denise Campbell  Hi Kate. How are you? I've been good. Do your bruises have a lump under them? Yes I get them for no reason too. Sometimes I get worried about it. I think I'm having a little pity party lately about having to be in meds forever. I'll get passed it. Hope you're well. I think I'm going to stay involved more in this site. Do you stay get on here often? How is the lady who had her surgery around the time we did? Was it Laurie? She had a bunch of complications

Rita Savelis  Denise, I hear you, Ihave pity parties regularly. And yet have been lucky to not get too many bruises. Or I'll just avoid looking or pretend they're not there.... Whatever it takes to keep going.
Take care.

Debbie Bentley   When I went to cardiologist shortly after surgery he done a echo and told me to come back in 6 months

Franklin Wyrick  I saw my cardiologist in one month post op, then in three months for echo and ct scan, then I will see him in six months and once a year thereafter.

Barbara Laurie  Unless you have other cardiac concerns besides your valve that sounds typical...Best Regards❤️❤️

Juergen Li  My cardiologist told at the last visit - which was my one month post surgery visit - that there would be no need to see him again. I received a mechanical valve (should outlast me) and got a wrap around my slightly enlarged aorta which should stop any further change. I am feeling great, are very active and had no complications and a very smooth recovery. Returned to work in less than three weeks.

Emily Rowley  My Cardiologist is excellent and does all testing on my heart. At first due to my cardiac complication/surgery I was seeing him every 2 mnths with consulation calls in between. Yesty I had my 6mnth post-op visit and since my heart is going well I will visit him in 6 months time (unless something happens before then) with update ecg+ekg. It depends how your condition is progressing and if anything needs closer monitoring. Is it your Cardiologist who you are not too happy with? You are entiled to a second opinion/change in Doctor to who you feel comfortable with. My old Cardiologist was only doing once every 12 months follow up.

Rita Savelis  It will really depend on your condition. It could be every 6 months or once a year. I know that is sort of scary... There is this feeling that one would like to be seen more often. I went to my GP a lot at first (since I couldn't see a cardiologist often), because I just wanted someone to tell me I was okay and to answer my questions....

Denise Campbell  Thank you everyone. Rita it is scary to think I won't see a doctor regular. That's how it's been for a while. I feel better now that I've heard from you all and your all hearing the same thing. Thanks guys. Today starts a new school year and I'm with preschool this year. Wish me luck. Good luck Juergen. Try to go slow and ease in.

Chris Vereb  Before surgery it was happening to me. Its called night numbness. Very common as we get older I think. For me it was the position I sleep. Easiest thing to try is get two pillows for you arms and rest them on the pillows when sleeping. Try not sleeping with your arm under your head and pillow. It has to do with pressure we put on our arms when sleeping.

Patti Talbot  I was told it was caused by sleeping on your back, which I was doing after my surgery. Once I was able to switch to side sleeping - gone!!

Jean Raber  What Chris said. I have a body pillow. Use the bottom portion to ward off sciatica and the top part to keep arm elevated. Stays in place better than two extra pillows and takes up less room in the bed. I had an expensive feather one when I was pregnant 20 years ago, but found the synthetic floppy cheapo one feels better now.

Meredith Bray  I was worried my first time flying also. But you know what? I had no issues at all. Before surgery I would feel weird things in my chest when changing altitudes, but since surgery I've experienced NO problems. My doctor suggested wearing compression stockings if I thought I wouldn't be able to get up and walk around on the plane. I wore them once, then disregarded them because they were hot and itchy.
We drove to Key West at my 10 week mark. I couldn't have driven down and back myself - 6+ hours one way. My ARMS were exhausted from holding the steering wheel for so long! I was still in the routine of taking naps, so it was nice to not be the only driver. It was a tiring weekend though, and I fell asleep pretty quick after relinquishing the driver seat on the way home.
tl:dr - You'll be fine. :)

Meredith

Kate Watson  Not very far yet, but I'm sorry for your loss. I am planning two short trips next month, when I will also be 3 months post op. Like Meredith said, I'd just be sure to get up and walk around on your flight and consider compression stockings. And on your drive, I don't know how long of a drive it is, but definitely make sure you stop every few hours to walk around. And stay hydrated too!

  I flew three months post op and it was fine for me. I did have mild chest pain from putting on my backpack, but that was it.

Denise Campbell  Hey all. My flight to and fro Maine went well. And two days after we got back we drove to Indiana. That was good too we made that a two day trip to and two say drive back. We did get out and walk around too. So it all was good

Meredith Bray  Nice! My first vacation was about 4 months post op. I went for an INR test 3 days after I came home, and it was 4.8!!!!!! A stern talking-to from my nurse, and we determined that i had consumed liquor several nights (I don't usually drink) and neglected to eat my usually salads and vegetables, instead subsisting on hotdogs, hamburgers, and potato chips. Whoops! Now, I'm not above running to the grocery store while on vacation to grab some broccoli or green beans to munch on throughout the day.
Glad to hear you had no problems.

Denise Campbell  Hey Meredith wok lent it be nice if we could drink whenever, and just balance it out with greens.

Elaine Cutri  Are you becoming more active? That's what happened to me. Now I'm getting more graceful - less bruises :-)

Denise Campbell  I guess I've been doing more and not being as sedentary I'm going to call my Coumadin clinic if it gets worse.

Emily Rowley  When on Coumadin, I noticed slot of unexplainable bruising, I talked to my GP he said the Warfarin will do that but since it is in my legs and didn't bump my head it would be okay. But definitely check with your Dr/the clinic esp with your mechanical valve (which is important).

Meredith Bray  Change in activity level, slight change in diet, addition of alcohol, weight change. Mine changed at the end of last summer and I'm not sure why. Maybe because it's warmer out and we're wearing shorts and being more active, you may just be noticing it more? I'm interested to hear what your doctor says.

Kate Watson  Did you ever get an answer to this, Denise? I noticed a big bruise on my leg that I was wondering about but had just gotten my INR checked which was in range.

Denise Campbell  Hey Kate. My Coumadin lady said its because of the Coumadin. I also take a baby aspirin everyday. Do you? She said it is more worrisome if it's on your torso area since it's harder to bump into things and hit your torso. So it might be something else causing the bleeding. I bumped my elbow and now I have a big ugly black and blue. She said with arms and legs you bump into things and not realize. It doesn't take a hard hit since we are sensitive

Kate Watson  Thanks for the response! I don't take any aspirin anymore, they had me stop it about a month ago. They said with warfarin and aspirin, the risk of bleeding was increased. But I've read some literature that suggests it is better with mechanical valves to be on aspirin, so now I'm confused. I think it's debatable and depends on the individual. Do they plan to keep you on it for life?

Denise Campbell  I don't know. I'm going to ask my cardiologist when I go for my echo in July. I remember he wanted me to take it because it part of the protocol. I'll let u know.

Kate Watson  Hi Denise, I'm still struggling with sleep issues too. I hate to admit that I usually can't sleep soundly unless I take something, like Xanax. For me, it's usually related to anxiety or just being unable to get comfortable. Have you ever tried melatonin? I tried it one night and it worked, though I forgot to ask the Coumadin clinic if it's ok so I need to do that before using again. It is good for regulating sleep. My surgeon said the sleep cycle is the last thing to resolve! I imagine cardiac rehab is stirring up some pain while you re-build your strength. Maybe mention it to your rehab and see if they have suggestions. Maybe you are over doing it there?
Ah the sun- I miss it. We had some beautiful days here in Washington state but it's been so gloomy here lately!

Denise Campbell  I'm going to ask the Coumadin clinic (heather ) if melatonin is ok. Rehab does make me tired but it makes my legs restless at night and sometimes my knees hurt. And my arms and my back. Lol. I guess I'm a mess. My surgeon never mentioned sleep but hopefully this isn't my new pattern.

Kate Watson  Oh man, I think we get so de-conditioned after surgery, so it hurts to build the flexibility and muscle strength back. I really can't say I'm looking forward to cardiac rehab , I'm having too many pain issues as is still! Do you stretch afterwards or while you are there? Stretching is one thing that's helped me a lot.
I'm surprised your surgeon never mentioned sleep issues to you, I hear it is quite common and expected post surgery. Though I thought it would be resolved by now for me!

Meredith Bray  I take atorvastatin. It took me about 4 months to settle my legs down. Instead of taking it right before I lay down, I take it about 3 hours before bedtime. Also, i don't know how far past surgery you are, but I suffered decreasing bouts of insomnia for almost 6 months post-op. Everyone is different though. I still have a tendency to not sleep if I'm anxious or tense about something. I used to drink sleepy-time tea, but all that did was get me in the middle of the night to go.
Meredith

Cathleen DeWitt  That's what I've been wondering,..I posted this same question last week and (member) Sophia Ridley went by 3 days after her surgery but couldn't see her or get info. She was still in ICU 😞.

Sophia Ridley  Nicola and Barbara first connected through Facebook. I remember seeing one of Barbara's relatives post something for Nicola post op which implied that there was news on Facebook.
Barbara/Dave - do you know? I haven't had chance to go back to St Thomas' this week.

Barbara Laurie  Hey folks, Nicola is finally awake and up, walking and eating. She's a tough fighter and before she was extubated they brought a food tray and she fought to make sure no one took it away😄 She's now in a new room with a lovely view of Big Ben , I think that's all the newest news so far!

Wanda Mroz  Oh thank you Barb! I'm so happy to hear that. I've been worried about her! Glad that she is doing good!

Kate Watson  I understand insomnia is very common after the surgery. I am having trouble with it now in my second week post op. Do you feel like it's possibly anxiety? I've been taking a small dose of Xanax to help with anxiety, plus I do a guided meditation before bed which helps. But I'm still not sleeping through the night, and need a nap during the day!

Tracy Simmons  Hi Denise. I have the same thing. I fall asleep just fine and about 3 hours later wake up and cannot go to sleep. I've learned some meditation and relaxation techniques which I've tried, but they don't work either. I'm on metoprolol and was on coumadin for six weeks, just ended it last week. I try to take a nap in the afternoon and sleep evades me then too.

Denise Campbell  I read that Lipitor can cause insomnia. So since I have to take that I started taking it in the morning. Last night was a little better Good luck Tracy

Mike Brill  Hi Denise, I replied to a note from you without reading your post first. I too am on Lipitor, although only for the last 6-8 years or so. I take mine last thing at night and sometimes find it difficult getting to sleep. I generally find it because of a whirring mind, so meditation might be a good idea, but I generally find reading will settle my mind and tire my eyes sufficiently for me to nod off.

Mike

Meredith Bray  Lipitor can aggravate insomnia, but the biggest culprit is surgery. I watched a LOT of netflix just laying in bed with my cPap mask on for hours. I think it was mostly I couldn't/wouldn't relax enough to let go and fall asleep. Try getting a massage? I got much better quality sleep during my naps during the day, I'm not sure why.
Meredith

Enrique K  No problem Denise. Didn't go to cardiac rehab. Developed my own exercises. I had a very fast recovery and very fit at the time of my surgery. It was never discussed with my surgeon and cardiologist. Others in this support group highly recommend it. Also make sure that your insurance covers it. Good Luck!

Clare Auten  I am a special ed teacher. My doctor had me wait 9 weeks but then week 10 was spring break. I guess I was out 11 weeks. ;)
I had a full sternotomy and was able to do a 4:30 rehab session after school.

Wanda Mroz  I was off for almost 4 months but I had OHS. When I returned I worked 4 days a week for awhile. I work afternoons so I was able to do rehab in the mornings before work.

Emily Rowley  I'm also a special ed teacher, however I can't go back yet. My Surgeon is concerned with my clicking Sternum bone that hasn't healed yet. So it's when you feel ready, you will know in yourself how you feel. I would suggest start by having shorter days (hopefully your workplace is flexible and supportive) and build the days up along you go, however we all have good and not so good weeks.

Denise Campbell  Yes Emily. You're right, good days and days when you're more tired and sore. I guess I'm just worried that's since its been 5 weeks for me I don't want others to think I'm taking advantage. But I am still easily tired and drained.

Mary Wagner  Hi, I teach orchestra at the elementary school. I am 7 weeks post-op. I was supposed to go back on 4/25 but I get too tired after about 3 hours. Last night I judged a festival and was gone for 7 hours. Really tired today but think I will go back on May 2. My rehab doesn't start until 5/19 as I waited too long to call. Can you work half days?

Denise Campbell  Hi Mary, I haven't ask about half days. If I go back it would be just the last three weeks of school. I'm going to start rehab and see how I feel. Right now I'm hoo drained to do all day at school

Mary Wagner  I know- me too! And the anemia is making me so out of great. It's breaking my heart as I retire this year. I would still have 8 weeks of school but 8 concerts to do....

Emily Rowley  You're defiantly not taking advantage of anyone, they should understand you have been through a major operation and your body still needs time to heal and recover more. See how you go at rehab, it will help as you progress. I feel heaps tired and worn out after a rehab session so I need more time. Anemia is terrible, have you had a transfusion?

Denise Campbell  Emily, I had one transfusion in the hospital three days after surgery. I'm hoping rehab helps with energy

Meredith Bray  pffft, i took the whole 12 weeks through FMLA! (Well, I drive CDL so I kinda HAD to wait that long....but still...) I felt like I could have gone back at 10 weeks. My first day back I was right back at work driving & warehousing & working with students. At the end of the day.....oh MAN I hadn't been that tired in years! But it was a completely different kind of tired than before surgery. I still had enough energy to come home, make dinner, clean up, and since I was still arguing with the Sandman about insomnia, I didn't fall asleep until close to midnight. It got a little easier each day. At 5 weeks, you should still be increasing your activity levels and taking lots of naps!

Meredith

Patti Talbot  You are ahead of me - I'm just 12 days - but your day sounds like mine. I was annoyed and frustrated with everything still not being normal and was hard on myself all morning for this. I called my sister (who has had same surgery) and she reminded me to listen to my body and slow down. It really helped to hear what i already knew. So relax and go to bed early and wear comfy pajamas and be easy on yourself. This is just so difficult, but tomorrow is a new day.

Barbara Adams  I'm 3 months post op and struggle with back pain. I had some physical therapy and it was helpful however the pain is still there. I also still have aching in my chest. Some days I feel good and others, very tired. Healing is really an up and down process.

Wanda Mroz  Takes time for the body to fully heal... Up to a year... So be good to yourself and patient with yourself. This is a big surgery. I had back pain, etc. I still get achy across my rib cage and I'm almost 8 mos post op. Much better than it was though.

Tracy Simmons  I am approaching 5 weeks post op and experience similar aches, but mine is more in my shoulders. Are getting enough sleep? Every night around 2am I wake up and it takes forever to get back to sleep. Be patient with yourself and treat yourself well.

Denise Campbell  Thank you all. I just got back from the E.R. Now I have cystitis. They dig find an antibiotic that doesn't mess with my Coumadin. Hopefully they right

Meredith Bray  Make sure you are standing up straight! Very straight! And that you are supporting your upper body weight when resting/reclining. Resist the urge to curl inward to "protect" your incision site. Head up, shoulders back!

Meredith

Nicola Laker  Haven't seen anything. I have messaged her hoping might get a response from her husband. No news is good news so they say. Hopefully she is awake and he is too busy to update! Xx

Sophia Ridley  Hi Denise, I had my mitral valve repair in mid Nov. I have a connective tissue disorder (EDS Hypermobility) which means everything's more stretchy and my muscle form weakens from lack of exercise.
I've had pains between my shoulder blade and spine, which prevented me sleeping flat. It spasmed recently and hurt a lot. I was using a hot water bottle and when spasmed a Physio had to sort it out (fabulous!) I was having trouble changing gear! I have had pain between sternum and ribs, which is/was Costochondritis, from trying to sleep on side and everything was still moving (meds and heat again).
I've also had muscle pain where my skull meets my neck, which was very tight. When loosened, my aura migraines have gotten a lot less frequent. When manipulating this area I had funny sensations under my scalp where I had felt tenderness.
All in all, I recommend that you see a Physio when 3 months (need to be skeletally healed) post surgery to put you back together!!!

Meredith Bray  Try standing up straight, and using your back muscles again. I had a LOT of back pain once I got home, until my Physical Therapist told me I really need to use those core muscles that hold my upright. In addition, make sure your head, shoulders, neck, and arms are ALL supported when you are resting. It'll get better!
-Meredith

Linda Wiebe  Hi Denise, I had a mitral valve replacement 4/15/15. You asked what the EF is, it is the ejection fraction, the amount of blood pumped out of the heart to the rest of the body with each pump. Normal is 55-70% Mine was 40-45 prior surgery, after surgery it was 25 and then I had my right lung drained and the EF went down to 15%. They do not know why it is still so low yet. My throat has to heal before we can try the TEE again. They think the TEE will help them to determine why the EF is not higher. I sure hope so.
Denise, I hope things get better for you soon. I am thinking it took several months for me to be able to no use the pain pills.

Denise Campbell  Yikes. Good luck. I don't know what my EF is. Good questions when I go for my four week visit.

Autumn Griffin  Yes, I had surgery on March 4 and I have a lot of upper back pain. It is actually worse than the chest pain at times. They are both getting better. I have found if I put pillows behind my back when I am in bed it gives me extra support and it is very helpful.

Kate Watson  Do you have a home testing kit or do you actually have to go to the lab every day? Starting on coumadin and all that goes with it is one of the things I'm dreading the most! Glad you are home, hope you can get some rest.

Denise Campbell  I have to go to the clinic everyday. I'm on the fence about getting the at home kit. They are expensive plus my Coumadin manager is concerned the patient can become obsessed with checking and since it takes a few days to change your INR level it is anxiety causing. So I don't know. Any opinions?

Erin Hannum  It can take a while to get the INR level where it should be and stay there. I know this from experience. I'm seven weeks post surgery and my INR is extremely low and has been for a week. Yes, the clinic visits are very annoying, but I figure it that I'd rather do that than wait for a pig or heart valve to fail on me in ten years. I have a mechanical valve, that's why I'm on Coumadin. My clinic does not recommend a home test until I'm regular for quite some time. Doesn't look like that will happen soon. Best of luck with your decision, however, please know that my nurse said today that it can take a week after changing doses to actually see a difference in the INR so we don't want to get obsessed with this.

Denise Campbell  Yes Erin it is easy to get obsessive about inr. But I agree. I have a mechanical valve too. I'd rather deal with Coumadin then surgery again in 10-15. Or less years for some people.

Barbara Laurie  So, Denise, that last line sounds like a comedy routine❣ Gee, says the Doctor.. I don't know of anyone getting headaches fron Lovanox, oh, by the way, your brain is asymetrical! Have a great day! Hope you're feeling better soon Denise and can rest at home❣🐥

Denise Campbell  Well lol. He asked me if I've ever had a crush scan. I said yes. He then asked if they had ever discussed findings. I don't remember them ever saying anything So he then proceeded. He did say radiologist said it was probably from inutero , so I guess I'll trudge along with my weird brain. It's got me this far with no issues.

Barbara Laurie  I was like, hey, Ive never heard of a crush scan!! 😄 Glad it was just that darn auto correct! Well, an asymetrical brain will be a great family joke for years to come, you're a gem, hang in there Denise, let us know how things go. Best Regards❤️

Wanda Mroz  Lol... I thought that said crushed can! I guess my eyes did auto incorrect! Hope you are feeling better soon!

Clare Auten  Wanda, This made me chuckle. I pictured Denise crushing too many cans on one side of her head....glad it is nothing to worry about.

Jan McClain  Well your post sent me to Google for far too long this morning, such that I didn't clean the house or start food preparations, and was actually in the shower when two groups of family members were arriving for Easter brunch and ringing the doorbell. I blamed this and now blame all bad behavior on pumphead brain and plan to continue to do so for the rest of my life. Anyway I was fascinated by your asymmetrical brain and HAD to research it. Rejoice, Denise! Your brain asymmetry may mean you are more adaptable and also more able to multitask, though unfortunately you may be more vulnerable to attack by predators. There was a fair amount of information on "paw preference" and lots of other interesting stuff. Look it up!

Clare Auten  1.8 is actually the bottom of my range.... 1.8 to 2.4 so don't panic about that number. They will get it straightened out.

Barbara Laurie  Denise, sorry it was so rough, we just got toSF for my surgery on Wednesday, hang in there❤️💕❤️

Clare Auten  Hang in there. It hasn't even been a week yet. Our bodies are amazing but healing takes time. I have an On-X valve too.

Emily Rowley  Sorry you have been going through all this pain. I too had iron transfusions as we all lose blood during our Op causing our Hemoglobin level to drop leading to side effects like dizziness, I hope you feel better after yours too 💛 Look forward to hearing how you are and how your new ON-X Valve goes 😊

Denise Campbell  I'm feeling great. Of course still tired but going home today. I heard my valve today. It took me a minute but it does sound like this old times watches. It seems loud in a quiet room.

Emily Rowley  That's great news, I'm pleased to hear 😊 Take care on your trip home. Can you hear it when people are talking? Do you have a recording of it? Hopefully it won't keep you awake at night.

Denise Campbell  No Emily. I hear it so far when the room is really quiet and small. I did notice when I went to sleep but when I was in the bathroom, home and at the hospital, I hear it loud then. Of course, as I sit here typing, I can here it. So strange.

  My dad had a mechanical valve and I could always hear it ticking away in the car. Pretty neat and I am sure a big adjustment to get used to the sound!

Denise Campbell  Thank you. All you words bring me great comfort. Thank you. I'll be back to post as soon as I can.

Petey Bello  Keeping you in my prayers! Please keep in touch when you are up and about. Looking forward to hearing about your recovery!

Clare Auten  Good luck to you. Hopefully they will still let you walk the halls with your IV pole.....I did when I was in for heparin only. Also hope you can get a good shower before surgery.

Denise Campbell  Thank guys. I hope for a shower before surgery too. I will have to ask about walking around.

Barbara Laurie  Denise, hope your days go by quickly, and you continue to trust in the Lord, all the best❤️❤️