Carolyn's Journal

Willie Radl  I'm 6 weeks and mine has gone down significantly in the last 2-3 weeks. I would guess you'll probably start seeing some improvements soon.

veronica gunthner  I'm only 2 weeks out and have the bump too! I was told it was sutures under the skin that would dissolve in time, and that it's more visible in thin people. I'm hopeful it will go down soon!

Barbara Wood  I had a huge one! I'm thinking it was pretty much gone after a month or so...congrats on 3 weeks! Best recovery wishes:)!

Adam Pick  Carolyn, Holy Moly! You just brought back a memory... That Bump!!!! Give it a few weeks. Here's what happened to mine - https://www.heart-valve-surgery.com/heart-surgery-blog/2009/11/13/bump-incision-after-open-heart-surgery/

Rose Madura  I can't remember exactly when it went away but when my cardiologist first saw me in the hospital, he wanted to look at my scar. He told me then that the bump will go away - not to worry. And it did. to me, the scar is sort of a battle wound. Maybe I'm weird.

Barbara Laurie  Everyone’s healing time will be different, but my bump was totally gone after about 5 months. Of course it lessened over time. Best Regards and glad to hear you’re okay! ❤️💕❤️

Wanda Mroz  I had a bump but can’t really remember how long it took to go away. It will take a few weeks. Glad to hear all is well! I agree with Rose... battle scar! You can hardly see it now... ck out my pictures and you’ll see. All the best! 💞

Carolyn Newell  Okay good to know everyone that this too shall pass I just need to be patient it sounds like. I hope it's a few weeks and not a few months but I am on the thin side so time will tell. Thank you!! XO

Carolyn Newell  I'm 5 weeks post op today!! It's definitely going down which is encouraging. Thanks so much everyone!

Bonnie Stone-Hope  Hello Carolyn,
Yes, agree that the sleep issue is tough. Tried the recliner, and even rented a hospital bed, but until I was back in my own bed, could not get much sleep at all. At about 3 weeks post op, I used about 3 good pillows for support, and slept in my own bed. So much better! In another few weeks, I no longer had to sleep on my back, so then sleep was once again, bliss!

Susan Killian  I got a wedge for the bed and started sleeping in a bed pretty quickly. However can't sleep in my side yet. Surgery was April 11.

Rita Savelis  Sleep was hard for at least a month after OHS. I took sleeping meds occasionally just to give my body (and mind) a break. I was in a bed, but sleeping on my back was hard to get used to (But it's now something I can do easily after all that practice after OHS).
Take care.

Civita Fahey  I'm happy to hear that you are doing well Carolyn. I also was anemic when l left the hospital.. as I mentioned in our phone conversation that was the hardest part for me. Just sheer exhaustion, but it does get better.. I slept in bed from day one, with LOTS of pillows..nothing really was comfortable.. I cant sleep on my back and I tried pillows to slightly move to the side. its all experimentation. I also wasn't a fan of sleeping on the recliner, though I did take cat naps on it.. this will all be a blur soon enough ! let me know if you have any questions, feel free to call me.

steve godbey  I have been in a bed every night since I got home from the hospital 3 weeks ago. I cannot stand sleeping on my back though. I typically wake up around 5:00 am and move to a recliner and then sleep another 2 to 4 hours. I will get better Carolyn, hang in there.

Carolyn Newell  I'm happy to report that I have moved into my bed after the first week at home. Still waking every night around 4-5am for about an hour and then back to sleep for 2-4 hours of deep sleep. Everyday I feel a little better. Today marks my three week post OHS.

Lyn Hubber  I was in chair for 6 weeks brought a wedge which didn’t help me stil find it hard to lay on my back small price to pay to be able to breathe again and walk Good luck with your recovery.

Sherry Stevens  My AVR was 5 years ago, with a bovine replacement. I tried a recliner but just could not sleep. I learned quickly, with my husband's help, how to sit on the bed, lie down on my side and roll to my back. I had never been able to sleep on my back prior to surgery but since there was no choice post surgery I had to do it. Five years later I still sleep on my back most of the time and am very comfortable. Surprise?! Be patient and kind to yourself, your body and your mind are both in recovery. They will follow your lead if you look to the path ahead where you are healing each day and regaining a strong healthy life.

Joan Lyons  There is a wonderful product call the Mattress Genie that my OT recommended. They have twin thru king. It is a blow up wedge that goes between you mattress and box spring. The air compressor blows up the wedge to any angle and height you want from flat to almost sitting upright. It will work with any bed except waterbeds. Worked like a charm for our king bed and I can use it later to read in bed. Fills easily and I lowered it quickly by disconnection the air hose then replacing it if I was in a hurry.
www.contourliving.com/ . or google Mattress Genie . I was able to sleep on my side with it by 8 weeks.

Lilly Black  That’s what happened to me as well! And my surgeon and hospital were not local. It was nerve wracking especially for my family who also travelled. But it all worked out very well! Good luck with the surgery....wishing you a great outcome ✌️😊

Susan Lynn  Thinking of you! You can do this! We'll be here waiting to hear your good news and to welcome you to the recovery club!

Carolyn Newell  Thank you all so very much for the best wishes and prayers and support. It got rescheduled for tomorrow first thing. I'll be in touch....

Gina Fiorentino  Necessities: chapstick, earplugs, eye mask. Also, if you have a Smartphone, you may find it nice to have ear buds to listen to music, audio-books, meditation downloads or the like while relaxing when awake. Lastly, dry shampoo, hand lotion, loose fitting boxer shorts (draw string or elastic), and a phone charger with a long cord to reach the bed.

Carolyn Newell  Thank you Gina Fiorentino! All wonderful advice. Especially the phone charger with long cord. I will go get that tomorrow. Were you able to sleep much? I found it so hard when I had my two c-sections. Appreciate your help! :)

Susan Rush  I bought a cheap pair of Pajamas to come home in. They were comfortable, easy for the nurse to help me into, and gave me something to wear for a day or two that I didn't mind receiving visitors in.

Deb Lewis   Hi Carolyn, I posted about this— what I needed in the hospital and what I didn’t in my journal that you can go back and read. I couldn’t face the thought of a bra for weeks after surgery. At home, good to have a stack of wash cloths so you can use a fresh one every time you shower to prevent infection. Liquid
Soap was also considered better than bar soap for infection.

Helen Daw  The two things I found the most useful are, the extra long charger and headphones. I did not wear any slippers, I was wearing the hospital nonslip socks. I bought a robe, but did not use, the hospital gave me a clean one everyday. I packed a pair of sweat pants ,cotton long sleeve shirt and a cotton sports bra to come home. Make sure your slippers are rubber sole, mine weren't and they were slippery.

Gina Fiorentino  Carolyn, I dozed off and on... and took a lot of "cat naps" in the hospital in about 2-3 hour stretches. The nurses start early, so it is nice to have the ear plugs and eye mask (the "Mindfold" is the best one I have ever found as it blocks out 100% of the light and also doesn't press on the eyes like the fabric ones)... from Amazon. It looks a bit weird, but when your able to sleep comfortably in a bright room, it is a lovely thing! ALSO, I've read that cardiac patients often get into unusual sleep patterns after surgery. The key is to not let it stress you out, and just get sleep as you can. This was great advice for me. I have found that I often still sleep 2-3 hours at a stretch, get up, lay down.... sigh... Twiddle my thumbs... and eventually go back to sleep. Or just relax. A lot. -Its all good.

Gerald Poulton  Lots of good ideas to take to the hospital with you but I consentrated more on home and recovery. I bought a really good air purification machine for home, last thing you want to do is sneeze and it worked for me. Next was a bath tub chair, those nice warm showers with your loving partner washing your back are soothing and priceless. I borrowed that from the local read cross, normally you rent them but free to loan in my city. I also got from them a bed rail to help getting in and out of bed one part just slides under your mattress and so very helpful. The other thing I did was buy a used treadmill, because I live in an area with hills, the hills didnt stop me but I used the treadmill a lot and I still do 8 months later. There may be more in my journal. One last thing, take a good positive attitude with you to the hospital and bring it back home when you leave. This operation is not only going to save your life but will hopefully enhance it as well.
🙏 Coming your way, you can do this 👍

Civita Fahey  Carolyn, I think what I found the most useful were the boxers so I could get in out and bed with the johnny and not feel "naked". they will give you slippers with rubber on the bottom so you don't have to take your own. I wanted my phone next to me and the plugs are far away on the wall, so a long extension cord is a good idea. To be honest, I brought so many things I didn't use. My ipad, kindle etc. .I didn't have the concentration to read.. I just liked having my phone in case I wanted to call someone. The hospital will give you whatever you need to be comfortable. They even have bras if you need them, actually I used my own. I didn't have a problem with wearing one..but I was lucky to only have a 4" incision so maybe that's the difference. I was able to clip in the back. I even brought dry shampoo but never used it.. my hair actually looked better in the hospital than normal ( hahaha).but, it goes by very quickly and you find you brought a lot of "extra" stuff that just has to be brought back.

Carolyn Newell  Civita, Thanks! I'm getting the long extension cord today! I think that will be very important to have. I'll bring dry shampoo too but don't know if I will need. The bra thing I'm not too worried about as I'm not very bustie. ha! And yes planning on the boxers for sure.

Carolyn Newell  Gina, Thanks on the mask idea! I ordered it from Amazon last night. And for the sleep advice....I'm going to take that as it comes and try not to stress about it.

Rose Madura  A big thing that helped me was a travel pillow for when resting in the chair. One nurse referred to me as the pillow lady

Carolyn Newell  Thanks Deb and Helen! Deb, I will go and read your post on this. I agree with the bra thing, not sure I'm gonna wear one for awhile after. Helen, I do have rubber sole slippers so I'm good there. Have a great day ladies!!

Lisa McLaughlin  Two things you might want when you come home from the hospital are a digital thermometer and a pulse oximeter. It was helpful for me to check my weight, temperature and pulse rate every morning when I got home from the hospital.

Carolyn Newell  Thank you Gerald!! I totally agree with the positive attitude. Makes all the difference in the world.

Carolyn Newell  Thank you Lisa! I ordered the bras you recommended. I definitely will want to know all the above that you mentioned when I get home. What pulse oximeter do you like?

Gerald Poulton  The one other thing that I bought for post op was a good blood pressure monitor, I bought one that detects Atrial Fibrillation as it seems most people get at least a short bout or two, came in handybecause I had a short bout in the hospital and then again after I got home. Although my blood pressure is good I still check it from time to time, a good investment in ones self.

Lisa McLaughlin  I think I have the Homedic brand pulse oximeter and got it at Walgreens. Another good purchase for me was an extra step stool so that I had one for the kitchen and the bedroom. I didn't realize how many things I keep on shelves that require reaching above my head!

Felix Cherny  I think the biggest preparation must be mental. I don’t want to scare you off, but each person is unique, and there could be numerous issues with you after the surgery. I had a mindset that I’d go in and out in a week, but ended up 23 days in the hospital. In general, the mortality risks are very low these days, but the inflammations, pain, etc haven’t disappeared of the face of the Earth yet. Get mentally strong!

Rose Madura  It wasn't a hessrt pillow but a travel pillow that goes around your neck. My hospital did not give heart pillows but a devise to keep the sternum together when sneezing etc.

Gina Fiorentino  Carolyn, I am on week five of my recovery... if you have any questions at all feel free to email me your address and I will share my phone number... gjfiorentino@gmail.com

Willie Radl  I think most of the key hospital items are covered above. I spent most of my time in the hospital gowns and only put on normal clothing for the trip home. Depending if you have someone to care for you when you get home you may want to move some of the hard to reach items that are higher up or in cupboards (i.e. bowls, plates, cups, etc.) to a level you will be able to reach to without stretching your arms to far above your head.
I also slept in a recliner when I got home because getting up from laying flat can be a bit challenging by yourself.

Carolyn Newell  Thanks Gina and Willie! It all became very real today when I saw my name on the upcoming surgery list. I'm ready to move on and get this behind me. Gina, I will definitely email you so we can talk this week. :)

Carolyn Newell  Susan Rush, I bought those cheap pjs today. They are pink with little hearts all over them. Thanks again for the thoughtful tip. :)

Mark Wilbur  I'd call the doctor when there's anything out of the ordinary. Better to be safe and hear them tell you so.

Oneida Arambula  Hi Carolyn, I am 54 and have already decided on the OnX valve - As far as the tissue valve, I personally don’t think I would want to have it replaced in 10 years . I am hoping someone answers your question so that I can also learn more. God bless you.

Carolyn Newell  Thank you Oneida for taking the time to answer my post. Really Appreciate it. Are you concerned at all about taking coumadin? When is your surgery?

Susan Killian  Hi Carolyn, I am 64, am having mitral valve repair hopefully, if it fails they will use a mechanical valve due to the longevity. I am a nurse and the coumadin issue does not bother me. I cared for many people on coumadin and it was not a problem. My hospital will even have me do my own testing at home if it comes down to that. I am very active, swim, kayak, hike and fish and am not at all worried about the coumadin. My surgery is April 11.

Carolyn Newell  Thank you Susan Killian for your information on coumadin. I have heard with the OnX valve that they are trying to get away from coumadin in the next few years which is comforting to know. I will say a prayer for you on the 11th that everything goes well.

John Formby   Hi Carolyn

I am 59 and in the UK . I had OHS to replace my aortic valve on 29 January 2018.
The decision to opt for a mechanical valve or a tissue one is not easy but it is very much a
personal decision and there is no right or wrong answer. Also, the advice and guidance from the experts may differ between the US and the UK, but ultimately the decision is yours.

I responded to a similar question on the forum a few weeks ago and thought this may help.


I met up with Mr Ng ( my surgeon at Papworth Hospital) on the 2 January where we discussed in detail the issues with my condition. During the consultation we spoke about the valve options. Mr Ng explained that he did not need to know which option I was going for until the morning of the operation so there was no pressure for me to make a decision at that time. Although he would not make a recommendation, he explained that as the life cycle of a tissue valve is 15 - 20 years, he could not give a guarantee to anybody under 65 that they would not have to have a repeat operation during their life time. He explained that it is feasible that repairs to a tissue valve could be done in future years by keyhole surgery, but there is no guarantee that this procedure could be done. With the mechanical value, it’s a one off operation with a guarantee that the valve will last for the rest of your life.
We then had a conversation about living with warfarin. Mr Ng told me to ignore the horror stories you find on the internet ( unfortunately I didn’t!!!) but he reassured me that living warfarin is a day to day occurrence for millions of people. He explained that having day to day minor accidents isn’t a concern- it just takes a little bit longer for cuts to stop bleeding. He said I should avoid contact sports, but those days are behind me anyway. I came away reassured that I would be in the hands of a brilliant man and the strong probability that I would be taking the mechanical valve option. During the weeks leading up to my OHS I discussed the valve options with close friends and family. All were supportive and the general consensus was that the mechanical valve option would be best for somebody at my age. As mentioned on my journal, my brother made the point that as I get older. If I’m feeling tired and possibly breathless, at least with a mechanical valve I’ll know that it’s old age whereas with a tissue valve I will have the added concern that the valve maybe wearing out!!
Finally, I spoke with my local doctor. Again, she would not recommend a route, but agreed with the view that age is a big factor in deciding which valve option to take. She told me that the first few months on warfarin can be frustrating but once your INR level and dosage have settled There is no reasons to stop you having a normal life.
I hope this has helped and I wish you and your patner well. Please keep me informed with his progress and if you have any further questions please do not hesitate to contact me.

I am now 9 weeks post OHS and am really well. I have been discharged by Mr Ng and am waiting to see my cardiologist. I have started my cardiac rehabilitation classes and am now making plans to return to work. I am getting use to the warfarin routine. As far as the valve click . Yes I can hear it, more so during bedtime, but both my wife and I are getting use to it and it’s not causing a concern.
I hoped this had helped in some way.

John 🇬🇧

Civita Fahey  Hi Carolyn, Im 56 and had a tissue valve last year.. I chose a tissue as I didn't want to deal with Coumadin and the ticking would drive me crazy, as low as it may be. I know that others on this site have no issue with it, I just personally did not want that lifestyle, if I could avoid it. Will I more than likely have to have another surgery, yes, but, as technology advances and the tissue valves lasting longer, I'm counting on the TAVR being the gold standard in 10-15 years when I would need it replaced. Also, I'm trying to stay as active and fit as possible so that if and when surgery is needed, I will be in decent shape and the complications of a redo is around 2-3%. its a very personal choice, probably the hardest we will ever need to make..,but eventually, you will decide on what is best for you.. best of luck.

Susan Robichau  I am 64 and having my surgery on Thursday. I have been told that there is a 75% chance that they can repair my mitral valve but if they can't I have opted for a tissue valve for the same reasons as Civita.

Carolyn Newell  Thank you all so much for the information you sent me on your valve choices John, Civita and Susan. It certainly is a very personal choice and hardest decision EVER as I keep going back and forth on this. Just wishing I would get a sign or something but I think that's being a little naive. I was told if I go tissue then I would be facing not one but two more surgeries bc of my age. UGG I certainly don't want that!

Susan Robichau  I am just hoping that I fall into the 75% who can have a repair instead. Evidently it is my anterior (vs posterior) valve which needs work involving building me a new chord. That is what takes me down to 75% vs 90 -95% chance that repair will work.

Carolyn Newell  Susan Robichau Well I think your odds are good and I would focus on that. I will be praying for you, your surgeon, and that you have a successful repair tomorrow. Best of luck and keep us posted. I will be eager to hear how it goes for you.......I'm next! XO

Jim Harvey   Hi Carolyn, I'm at the "top of the list" - scheduled for Monday. My surgeon believes he can repair the mitral valve, but the backup is an artificial valve. I am slight of build, and my cardiologist said I'd very likely hear it. Plus the blood thinner thing...I already have to manage diabetes. I know the artificial valve won't last forever, but I also know I won't have to have OHS to replace it. I'm 59 so I figure if I get another 25-30 years out of the valves, I'd be doing well. Of course, I could always get hit by a bus and it wouldn't matter anyhow, right!?

Carolyn Newell  Hi Jim, Exactly!!! haha Darn, I was hoping we would rub elbows in the halls of St. Vincent's but I think you will be long gone when I get there in two weeks. Sounds like you will go with the tissue valve if it needs to be replaced and that is what I'm leaning towards. Best of luck for a repair and looking forward to hearing how it goes for you and what the food is like there. Keep us posted. Praying for you .....

Carolyn Newell  Civita, I wanted to ask you about the nausea part with the narcotics. I too was throwing up for five days after my second c-section so of course it's a huge concern of mine. Anything I can do? Should l tell the doc about it before surgery. What's your advice on that? I know about zofran and will ask for that but is there really anything you can do about it beforehand?

Civita Fahey  Caroly, I did tell them that I reacted like that with any narcotics and they the anesthesiologist said they would put something in my IV to help with it. I cant tell you if it helped or not as I did still vomit, but, maybe it did help and it only lasted an hour or so and it could have been worse..They also put a patch on ear right after too, which seemed to help and they kept that on me for a couple of days.. I would say talk to anesthesia and they will do what they have to keep you comfortable.

Carolyn Newell  Civita, Perfect and will do. Does everyone get a heart pillow? I want one just in case I sneeze or cough. I've heard that they really help.

Civita Fahey  I got one.. I believe everyone gets some kind of "heart pillow".. funny mine is still in my family room on the recliner.. reminds me every day hahaha.

Maureen Dainton-Lynes  I'm 78yrs had my op June 2017 I chose a mechanical valve but it ended up haveing a repair,I didn't want to take blood thinner for rest of my life good luck