Lillian's Heart Valve Journal

Terrie Syvertsen Lillian/.First off Heart Sister....Steven is sweetly correct(Bless your heart Steven/popeye) in that you are a beautiful woman and to let you know we have twin ... Read more

Terrie Syvertsen Lillian/.First off Heart Sister....Steven is sweetly correct(Bless your heart Steven/popeye) in that you are a beautiful woman and to let you know we have twin looking scars. Mine is raised up in between the breast(cleavage area) and is still sore. I happen to have been called for my mammogram just Friday and didn't want to make an appt. due to the soreness of this area. The rest of the incision(full sternotomy during surgery a month before yours!) By the way I love my scar as a sign of survival! I bought walking shoes at big 5 last night and the clerk was looking down my shirt as I was having difficulty angling myself to tie my shoes(really cool ones, orange, purple, gray, blue!) He said "Ouch, that looks like it hurts" and my husband told him I had OHS. By the way. Due to having 3 separate bad run-ins with viruses since Dec./ medication changes and insulin changes I went from losing weight to picking up 30 lbs too since surgery to which I am now going down again since my insulin changes, increase in activity and immune system finally got its act together again. I am back on track and if you want a little support with the weight issue I will back you up if you want kiddo(tsyvertsen1@sbcglobal.net)I will be happy to coordinate with you if you want to write me above email. We need to keep ourselves on track now that we are mended and I for one have been able to now finally get it going again to realizing that being given a second chance is a very big thing that I will not do well if I don't get back into a diligent awareness of diet and exercise. Let me know!
Anyway about the mammogram(pardon my scattered writing here Lillian as I have a garden gnome planter sitting upside down by my garden gate in the middle of having a new "paint job" and I have to do the painting in
different times so he is sort of unhappy being upside down out in the open and I am trying to hurry and get him in a position to continue with his sapphire blue "Hat" shortly. Being a painter yourself, I know you know the feeling of not wanting to put the paint brush down when you are on a roll! Ha. I like your acrylics! Nice color combos! Peaceful.
Oh yeah, back to the mammogram which I didn't want to do for fear of the tender areas but I decided to make an appt. so I go in for mine on June 18th. With what you wrote about your experiences and health I think maybe you ought to go too! I am glad you mentioned it in your post as now I know it was the right time to get it done. I am waiting with a smirk on my face for the day when the "Man" responsible for designing this "mammography machine" tries it out for himself so he feels the Squishiness of the procedure and in his case the "shelf" shifts a little lower below the waist. Sorry if I offended you ladies but I have many men think we are nuts for not liking to go get this done when we have to. In truth it isn't as bad as it looks. So I hope you too will make your appointment and do know that I being one month out of surgery than yours that I too have spots up and down the incision and especially on the one right side of
the breast that has issues with soreness. It is all part of the healing of the chest wall and this area is commonly very sore for some time for a lot of women. In time it will heal and life will get back to normal, eh? Well, I am
off to work on the elf. Take care.

Lillian Mark Steven,what a lovely, way to help support my new appearance. Thank you for the boost. You are special inside and out......as you understand the ohs chest scars ... Read more

Lillian Mark Steven,what a lovely, way to help support my new appearance. Thank you for the boost. You are special inside and out......as you understand the ohs chest scars on women is a delicate situation. Thank you. 💗
I have big thick and long scars all over my front torso along with odd shaped abdomen from repeated. ....over 20 surgeries. My husband tells me I look beautiful. I thought he was blinded by love. Those few words from your male perspective means more than vanity, thank you for posting heart friend.

Lillian Mark Hello Terrie, nice to see you respond and that you have life going on☺. I am tickled and delighted to see we share some things and are both going in for ... Read more

Lillian Mark Hello Terrie, nice to see you respond and that you have life going on☺. I am tickled and delighted to see we share some things and are both going in for mammograms.😊😊.let me know all goes well☺. I don't get the 30 pounds. My glucose A1C,and thyroid just came back normal. ... menopause was surgically induced 10 yrs ago and hormones just fine. I will be 52 this year......hmmm. Anyway, I have gotten my husband to eat healthier, I have always had to since my body is so sensitive. I do 45min to an hour of cardio 7 days a week,eliptical, and incline treadmil.i walk 5 days a week for 1 hour with my next door neighbor. I carry on with my art,music,family and mental health care.i hope my body is able to get back metabolizing normally. I feel quite healthy over all. I have had so many new starts in life physically and emotionally. It is taxing,but I struggle well......i wish continued good health and happy days for you. Stay in touch.

Terrie Syvertsen Lillian- You sound like you are on the right path and I am not far from you in determination either! We can do this and our bodies will learn to metabolize ... Read more

Terrie Syvertsen Lillian- You sound like you are on the right path and I am not far from you in determination either! We can do this and our bodies will learn to metabolize better the more we continue to stay positive and strong in attitude and in Faith in ourselves to get his done! You stay in touch also and feel free to email me if you care to keep checking in on our progress!
Take care now and keep posting as this community is a great support and love. I will be in touch too.

Meredith Bray I had my first mammogram ever about 3 months post-op. I told the tech I had just had surgery, and she was very gentle with me, telling me how she was going ... Read more

Meredith Bray I had my first mammogram ever about 3 months post-op. I told the tech I had just had surgery, and she was very gentle with me, telling me how she was going to move my body before she did it. I experienced the expected squishing discomfort but no issues related to surgery.

Lillian Mark Thanks Bob,you caught me...your comments are true I admit. Thank you for recognizing. You are thoughtful and I hope your journey.....actually I wish for all ... Read more

Lillian Mark Thanks Bob,you caught me...your comments are true I admit. Thank you for recognizing. You are thoughtful and I hope your journey.....actually I wish for all my heart friends strengths and joys, triumphs and supports💟💟💟💟

Lillian Mark Clare,you take care too.i am not vain about my scar at all my husband encouraged me to follow my dermatologist suggestion of silicone gel. It is pleasant,I ... Read more

Lillian Mark Clare,you take care too.i am not vain about my scar at all my husband encouraged me to follow my dermatologist suggestion of silicone gel. It is pleasant,I will add, and I hope you have good results too. Thank you💟

Lynn Quast Hi Lillian! I don't come on the site often anymore because I keep trying to move on, it will be a year for me on April 9. I always check on a few people when ... Read more

Lynn Quast Hi Lillian! I don't come on the site often anymore because I keep trying to move on, it will be a year for me on April 9. I always check on a few people when I do visit the site, you being one of them! I'm always happy you're still with us after all you've been through!! I'm still struggling with major anxiety and depression even with therapy. Thank god it doesn't happen to everyone. I just wanted to say I understand how hard it can be to stay and continue the fight but you are always so kind to everyone it would be a huge loss to the world to lose such a lovely, perseverant and courageous person like you! You are an inspiration Lillian! You're in my thoughts and prayers so often! Huge hugs!!!!!

Robert Osmachenko Hello Lillian. It's great to hear from you!! I often wonder how and what you are doing. Keep writing and talking... its good for you and we can help.
I ... Read more

Robert Osmachenko Hello Lillian. It's great to hear from you!! I often wonder how and what you are doing. Keep writing and talking... its good for you and we can help.
I think you are making progress. 45 min on the Eliptical is super good! I sense you are fighting and working hard. Do your Irish traditions proud. Thinking of you. Bob O.

Lillian Mark Lynn,what sweetheart 💗💘. I AGREE,long term mental health issues on top of medical issues is something I am glad isn't the norm. Any of us who do ... Read more

Lillian Mark Lynn,what sweetheart 💗💘. I AGREE,long term mental health issues on top of medical issues is something I am glad isn't the norm. Any of us who do have compounded issues, know that getting professional help doesn't take it away,it helps us stay afloat and we are not lazy or weak. ......we are often treading water and that is a lot of work. Thank you for sharing your generously kind impressions of me. I hope you get some freedom and a break from the weights you carry. Congratulations! !!!!!💗💗💗💗 on your anniversary. You have earned life's big and little rewards. The little ones are so precious. Thank you for giving me a precious gift of support and genuine care. Such lovely heart friends here to support each other. Lynn keep up your transition of moving on. That is just as important as all the individual stages this community goes through. Hugs back. Happy St Pat's day.
Ps .why does portions of this site think you are new here?
Love all of ya, Lillian

Clare Auten Mine sounds the same except I have heard it called hypertrophic (hope I spelled that right). I am a year out very soon and while it has not cleared up it doesn't ... Read more

Clare Auten Mine sounds the same except I have heard it called hypertrophic (hope I spelled that right). I am a year out very soon and while it has not cleared up it doesn't seem to be getting worse. I am trying an OTC scar patch but don't know the name right off hand. Only been doing it a week so I don't know if it will work. I am in hospital right now for my INR bur will post the name when I get home.

Clare Auten Sorry Lillian but I just saw this question. I am trying the scar away silicone scar sheets. I got the long ones...7 inches. They don't cover my whole scar ... Read more

Clare Auten Sorry Lillian but I just saw this question. I am trying the scar away silicone scar sheets. I got the long ones...7 inches. They don't cover my whole scar but I figure no one sees the bottom of it anyway. They seem to be helping but it has really only been 3 weeks. I think the scar is softer and less sensitive. I will keep up with it because it is not hard. I wear it at night...directions say 12 hours and then not during the day.

Eleanor R I am glad you are doing well Lillian. Like you, I have a 2,30 to 4 rehab session three days a week. Originally it felt overcrowded for the space, but patients ... Read more

Eleanor R I am glad you are doing well Lillian. Like you, I have a 2,30 to 4 rehab session three days a week. Originally it felt overcrowded for the space, but patients have steadily graduated and now we are down to about 8. Few new ones have joined, but there are many sessions so they may be in morning classes. My challenge will be keeping up the exercising with the cold DC area weather once the rehab sessions finish next month. Since I don't like exercising much anyway, I try to listen to books on tape so that I am not constantly checking the time elapsed! I am glad we have come this far and wish you a steady recovery going forward. Happy Thanksgiving to you. Eleanor

Lilly Black Lillian, those dark moments that you speak of, could it be related to drugs? I was just watching Adam Pick's video and listened to his story about post-op ... Read more

Lilly Black Lillian, those dark moments that you speak of, could it be related to drugs? I was just watching Adam Pick's video and listened to his story about post-op depression. It reminded me about my own experience.....I got depressed, but I was coming off some heavy meds! people have different side effects....meaning, I may not react the same as you do by taking the same drugs. Your dark moments could be a side effect of the drugs...but don't forget, your body just went through a huge trauma. Try to take some time to relax and visualize happy moments, or calming moments. The sound of the ocean works for me. Calming, serene music with ocean sounds...even better. Take one day at a time! it is a healing journey, and it doesn't happen over night. I wish you all the best....hang in there! Happy Thanksgiving!
Lilly

Lillian Mark Thank you Robert, Eleanor, and Lilly for pausing to pass on a message of support and care. I actually do like exercise and I am so glad I can go at it 7 days ... Read more

Lillian Mark Thank you Robert, Eleanor, and Lilly for pausing to pass on a message of support and care. I actually do like exercise and I am so glad I can go at it 7 days a week now.Three at rehab,4 days on treadmill. Eleanor, I had to giggle when you mentioned listening to books so you are less likely to watch the clock. Well,even though I appreciate my exercise time,I find it comes more natural if I keep a towel over the timer on my treadmill and clock out of site. Like a" watched pot never boils "sort of things. Robert,I appreciate your wishes for my peace and health☺.Lilly, you are so kind to pass on the things to think about and to try regarding my darker places. I agree with you,it all makes perfect sense. I suffer chronic,life long severe,depression and severe PTSD. I am tired if it ,but it is a part of my life. I continue to push on and continue through my emotional pain and appreciate appreciate and take advantage of the more pleasant times. Your calming suggestions are definitely something to practice and take advantage of less stress and more peace. My darkness has not reached a level lower than what I live with. I so agree meds affect people so differently. I am watched closely by several doctors and several fields and we try to work as a team and keep communication ongoing to keep me safe and as stress free as possible. You will like this, I am cuddling with my lap dog.he was "prescribed " to me several years ago to help bring peace through reduced anxiety. I am hoping to work on composing my music and painting these next few days. If nothing else I will play holiday music and feel that joy. THANKS again Lilly,and all of you.. your Responses mean a great deal. From my heart to yours 💟

Lilly Black Yes, exercise definitely helps. I also suffer with anxiety and sadness. I am not a depressed person, but I get sad, and feel the darkness you mention. Swimming ... Read more

Lilly Black Yes, exercise definitely helps. I also suffer with anxiety and sadness. I am not a depressed person, but I get sad, and feel the darkness you mention. Swimming was always a stress reliever and a great rehab method for after surgery. My last surgery in 2007, I began swimming after 6 weeks of surgery and never stopped until last year, when I was having issues with my valve, and didn't want to push it. I plan to get back swimming after my surgery this time as well. It greatly helps! I'm happy when I listen to music, creating recipes or projects, swim, speak with my son and husband, and watch good movies. I try to focus on my happiness.

My mantra I learned from Deepak Chopra from my last surgery, and I am practicing it again for this surgery, as it helps clear my mind of dark thoughts and helps me to be grateful for what I have:
The Heart Sutra: “Every decision I make is a choice between a grievance and a miracle. I relinquish all regrets, grievances and resentments, and choose the miracle.” I say this to myself several times until I feel it in my mind and heart.

I wish you all the best! take one day at a time....all we have is NOW!

Lilly

Lillian Mark You sound like you have found ways to live life with these emotional hurdles.I know i don't know you,but I am proud of your choices to help yourself. I loved ... Read more

Lillian Mark You sound like you have found ways to live life with these emotional hurdles.I know i don't know you,but I am proud of your choices to help yourself. I loved swimming as a child and did so as well as diving. My heart infection at 18 included stroke,coma and brain abcess. I had to relearn functioning,but my ability /sense of balance,stability, and what is up/down is permanently compromised and interferes. I am unable to swim,bike,play sports etc. I think a lot of people find swimming invigorating . The other things you enjoy sound very enjoyable to me too.Enjoy ☺

Lilly Black Lillian, thank you. I believe we all need to find our element as we all have different strengths and weaknesses. I find that when I have time to write to people ... Read more

Lilly Black Lillian, thank you. I believe we all need to find our element as we all have different strengths and weaknesses. I find that when I have time to write to people on this site, I'm also reminding myself of what I can do and what I need to do to keep moving ahead and progressing at life. Life is hard but we must continue to work toward what helps us cope, the things that motivate us, and provides us with something to look forward to. I don't have much time for myself with a full time job and a husband. And right now, I am so consumed with this upcoming surgery. But I will be spending time with my son before and after surgery, and I am so looking forward to it! I think the key is finding things to enjoy in life, whatever that may be at the time. I wish you lots of good things in life, and no more complications, but mostly I hope that your healing process will take you where you want to go and that you continue to feel better. Take care, Lillian.

Daniel Spurgeon Although none of us can change history, it is positive that you are aware of the ways that past events affect you, so that you can lessen the impact and seek ... Read more

Daniel Spurgeon Although none of us can change history, it is positive that you are aware of the ways that past events affect you, so that you can lessen the impact and seek support from your friends on this site and in your town. What kinds of painting and music do you enjoy?

Tom Elliott Hi Lillian. It's a long road, is what I'm finding - even though we're making progress it's not always as fast as it feels like. Our bodies and spirits took ... Read more

Tom Elliott Hi Lillian. It's a long road, is what I'm finding - even though we're making progress it's not always as fast as it feels like. Our bodies and spirits took a pretty good pounding there, and even though muscles are getting back to work and bones are knitting, we're still works in progress. I also hit patches of sadness - I'd say "for no good reason" but there's an excellent reason: I just had major trauma, and sometimes the ribs hurt, sometimes the spirit hurts. Longer time post- surgery folks say it gets better, and I'm putting my faith in them.

Sorry for the long rant. We're all pulling for you and appreciate your pulling for us.

Lillian Mark Tom,I didn't feel you went ranting.If there is anyplace to talk through and work through our individual stages,THIS community is the place. Like Lilly suggested ... Read more

Lillian Mark Tom,I didn't feel you went ranting.If there is anyplace to talk through and work through our individual stages,THIS community is the place. Like Lilly suggested she works on her own functioning as she shares ideas for other heart friends here. Daniel,you asked what types of painting and music I enjoy. I use acrylic on canvas. I painted a collection of realistic individual flowers and holiday paintings as well.I love them and had them printed on note cards (envelopes for each)several years ago. I have been selling them through galleries, gift shops,word of mouth etc. I have several works in early stages and in my mind. I am currently working on a collection of three canvas with acrylics. This is my largest project of abstract work on canvas . I used to paint glass and stained glass. I paint and compose with lots of emotion and heart and love of the processes.My piano work is whatever I hear in my head (just like my paintings I see in my mind). If I give a label to my music,it is classical in nature. All my pieces tell a story of which I visualize as I play. However when I play the piano ,I change up the speeds and weight according to my emotions at each sitting . I dropped out of piano lessons early grade school. I never learned to read music. I played what I heard. Over the years my hands and heart have led me to create pieces. I have them audio recorded as I rely on hearing them in my mind to play when I feel rusty. Kind of a long answer that may not be an actual answer. Thanks for asking. And,to all your gentle responses. 💗

Lilly Black Lillian, that's great! you have awesome creative outlets! I'm happy for you! Dan, my husband, plays piano, and I love listening to him. He has been schooled ... Read more

Lilly Black Lillian, that's great! you have awesome creative outlets! I'm happy for you! Dan, my husband, plays piano, and I love listening to him. He has been schooled however, he plays from the heart! you guys are so lucky you can play music. Music is like the sun....you can't live without it! it feeds the soul. Happy playing and painting!
Lilly

Lillian Mark Danial,I am not sure why,but my scar is darker and more prominent than this picture depicts.It is shiny and very sensitive to any touch. The skin surrounding ... Read more

Lillian Mark Danial,I am not sure why,but my scar is darker and more prominent than this picture depicts.It is shiny and very sensitive to any touch. The skin surrounding it is also a bit darker and reddish. Has anyone explained why yours is quite dark? Mine is also raised at the top,visible when dressed,and gets darker and completely smooth in the hidden portion. How do you feel about yours?

Hey Lillian. I follow your journals and am always amazed at your strength and resolve (finally found the correct word) in some of your challenges. You have ... Read more

Hey Lillian. I follow your journals and am always amazed at your strength and resolve (finally found the correct word) in some of your challenges. You have a tough row to hoe and I pray for you regularly in the hope that you can find some relief from your health issues. Keep talking as I am really interested in how you deal with adversity and challenges because that is how we learn to rise up and grow. Sounds a bit depressing but I've learned the most when I had challenges and the lessons stick too! Healthy heart wishes to you too. Bob O.

Lillian Mark Thanks to Joseph,Daniel,Robert,and Christine. Unfortunately the challenges I juggle are far too many to mention,but there is no need to anyhow. Despite that ... Read more

Lillian Mark Thanks to Joseph,Daniel,Robert,and Christine. Unfortunately the challenges I juggle are far too many to mention,but there is no need to anyhow. Despite that truth,I still find it surprising the positive impact I have on others would are open to hear me. I struggle quite well with my continued challenges. I understand that it is kindhearted souls who also live a journey filled with challenges and a full plate, that it is those who "get it". I agree that rehab will be a moral booster. I am up to 35 minutes daily brisk walking for several weeks ago closely monitoring my symptoms. I am so happy to add Rehab II. Thanks for your support. I humbled and appreciative of all of you.💗💗

Lillian. You certainly have had a rough road. It does sound like some things are improving but I know how hard it is to manage multiple conditions and you ... Read more

Lillian. You certainly have had a rough road. It does sound like some things are improving but I know how hard it is to manage multiple conditions and you still have such struggles to get through. Congratulations on finally getting back to sleeping in your own bed AND in your pre-op position. That is certainly progress. Getting back to your studio and how great that you finished your piano piece. It sounds like you are doing everything you can to keep moving forward. I will continue to keep you in my prayers as I know you still have so much ahead to get through. Blessings to you!!! ~Karen

Daniel Spurgeon Lillian, I am very happy to hear that you are noticing all the victories in your life, big and small, and not letting nature's challenges, physical or mental, ... Read more

Daniel Spurgeon Lillian, I am very happy to hear that you are noticing all the victories in your life, big and small, and not letting nature's challenges, physical or mental, keep you down. I'm Glad you mentioned your efforts to correct the stigma against mental medical issues. The military has an ongoing program to eliminate stigma in one of the most stigma-prone organizations on the planet and it is showing signs of success. I am glad you are also helping the cause by sharing your experiences.

Lillian Mark Thank you Linda,Daniel,&Karen.Daniel,I am hopeful as the Military gets more education about assisting the population of which you speak. That is benefitting ... Read more

Lillian Mark Thank you Linda,Daniel,&Karen.Daniel,I am hopeful as the Military gets more education about assisting the population of which you speak. That is benefitting others as well. I do what I can as one person to fight the stigma and get appropriately educated caregivers of all disciplines to become educated and supportive. 😊💗

Daniel Spurgeon Until this year the federal security clearance application asked if you had ever received any mental health treatment, which of course discouraged everyone ... Read more

Daniel Spurgeon Until this year the federal security clearance application asked if you had ever received any mental health treatment, which of course discouraged everyone from seeking treatment, because if you lose your federal security clearance you lose your position in the Air Force, either Reserve or full time. This year the form was changed, and only asks if you received a mental health diagnosis that interferes with reliability to perform military duties, in the judgment of the patient. The military medical system has also changed its rules so it doesn't necessarily even notify a patient's commander of a member's mental health treatment. In certain circumstances they will, such as if the patient needs to be placed on a Do Not Arm roster. Otherwise the mental health treatment is a private matter like most other conditions.

Jayne Martinko Lillian, just read your story and wishing you moments of peace as you fight to recover. I am heading to Meriter on Thursday for mitral valve repair. Perhaps, ... Read more

Jayne Martinko Lillian, just read your story and wishing you moments of peace as you fight to recover. I am heading to Meriter on Thursday for mitral valve repair. Perhaps, we will cross paths in rehab. warm wishes on this cold, rainy day.

Terrie Syvertsen Lillian. Thank you for posting and giving us an update. It has gotten harder to keep up with people as the website has changed so much making it easier and ... Read more

Terrie Syvertsen Lillian. Thank you for posting and giving us an update. It has gotten harder to keep up with people as the website has changed so much making it easier and more accessible for many more people to come into the community. Sometimes there are so many people you want to catch up with who have had their surgeries and in their recovery's and you turn around and see someone with a thought or question and you stop and dive right in and kind of shuffle around the intended person you set out to contact. There are more and more new people just beginning their heart adventure and in knowing this I hope today that each and everyone will take a moment for our Heart Sister Lillian and offer up a loving prayer. You are in my heart today and Lillian, if you want to email me at home please contact me
anytime at: (tsyvertsen1@sbcglobal.net) I am in my 9th week of recovery and doing well. I hope things get better for you and your body begins to heal better as we head into the Holiday's. Love to you Lady, I am glad you posted and will be sending prayers and healing thoughts. Terrie

Eleanor R Lillian, my thoughts and prayers are with you. I am sorry to hear you are struggling, but I must say I admire your spirit, not giving up and trying to move ... Read more

Eleanor R Lillian, my thoughts and prayers are with you. I am sorry to hear you are struggling, but I must say I admire your spirit, not giving up and trying to move ahead on so many different fronts. You are a strong woman! Love to you, Eleanor

Terrie Syvertsen Lillian. Terrie here! So glad you honored my request to have some word from you as I was worried. So, thank you for as you can see there are many people who ... Read more

Terrie Syvertsen Lillian. Terrie here! So glad you honored my request to have some word from you as I was worried. So, thank you for as you can see there are many people who continue to open their hearts with you and I am one.
I know you have more than your share of medical challenges to face and I am happy to read you are doing so much in spite of them. Working with your paints, finishing your piano piece, and taking life on one day at a time. I am proud of you and your attitude to keep moving forward. By the way, I know it is hard for you to post so if you want to email me at: tsyvertsen1@sbcglobal.net and I will give you my phone number so we could talk if you would like. I would love to hear about your paints @ music. I know things are difficult but maybe talking instead of dealing with the posting would lift your and my spirits up as I would love to talk to you as well. Think about it and I will continue to send you healing prayers and thoughts. Fondly, Terrie

Hi Lillian. The fact you have the strength to post something for us, I think, is great. Glad to hear you made it through. I was waiting to hear from you. ... Read more

Hi Lillian. The fact you have the strength to post something for us, I think, is great. Glad to hear you made it through. I was waiting to hear from you. :) Thinking of you and sending thoughts of strength and healing for you. One day at a time....

Daniel Spurgeon Lillian, there is absolutely nothing wrong with feeling down, physically or emotionally, after an invasive operation like ours. Good for you for talking to ... Read more

Daniel Spurgeon Lillian, there is absolutely nothing wrong with feeling down, physically or emotionally, after an invasive operation like ours. Good for you for talking to someone about it. Please also focus on the positives, such as the fact that the ordeal you just went through was a repair, and you now have better health than before. Once your body adjusts to the repair work you can appreciate it much more easily!

Terrie Syvertsen Lillian. Thinking of you and hope you are doing well in recovery. Will be looking for an update from you when you are feeling up to posting. Understand it isn't ... Read more

Terrie Syvertsen Lillian. Thinking of you and hope you are doing well in recovery. Will be looking for an update from you when you are feeling up to posting. Understand it isn't easy to do until your body wants to give you permission! Take care. Prayers and thoughts your way. Terrie

Daryl McCallum I had wire, sutures and glue on the outside for final closure. when I woke up I had a silvadean strip on the incision for quicker healing. The strip came off ... Read more

Daryl McCallum I had wire, sutures and glue on the outside for final closure. when I woke up I had a silvadean strip on the incision for quicker healing. The strip came off 10 days later to some beautiful work of my surgeon.

Clare Auten I woke up with a "bra" on but no dressing on the incision at all. They used surgical glue on mine. I saw the wires underneath on a chest xray but have no idea ... Read more

Clare Auten I woke up with a "bra" on but no dressing on the incision at all. They used surgical glue on mine. I saw the wires underneath on a chest xray but have no idea how many layers are in between. My surhery was on a Thurs. I did a selfie on either Fri or Sat to see how scary I looked before my kids, ages 4,7, and 13, came to visit. I got take a shower when I got to my own room (either Sat night or Sun morning) and was told not to scrub that area and pat to dry. I found it more comfortable to wear a bra 24/7 for a long time to hold thing in place even when I laid down. Yes, I could wear my regular bras. I did buy one non-underwire for those first few days. My incision seems to start pretty high and ends just under the bottom band of the bra. Ask if you need more. This was only my second experience with any type of surgery so I was a novice. My first was my one c-section so it didn't compare at all. :)

Mine was in 2002 so they probably do things differently now, but there was no dressing on the incision and it looked fine. My biggest problem was not the ... Read more

Mine was in 2002 so they probably do things differently now, but there was no dressing on the incision and it looked fine. My biggest problem was not the incision but the breast bone hurt rubbing together. I'm not sure how'll they'll do the second surgery yet.

Lillian Mark Oh great info Susan and Clare thanks.i hope I am able to wear and underwire soon after since it is so much supportive for me. I purchased sleep/comfort no wire ... Read more

Lillian Mark Oh great info Susan and Clare thanks.i hope I am able to wear and underwire soon after since it is so much supportive for me. I purchased sleep/comfort no wire one.did you experience wearing your own no wire bra at the hospital.

Daniel Spurgeon My sternum bone was closed with steel cable (not wire) , the layers of soft tissue sutured with dissolving sutures, and the skin glued. When I woke up there ... Read more

Daniel Spurgeon My sternum bone was closed with steel cable (not wire) , the layers of soft tissue sutured with dissolving sutures, and the skin glued. When I woke up there was a thin white dressing on it which the nurses removed 24 hours later. It has remained uncovered ever since. I was instructed not to put any creams on it and to simply avoid direct spray in the shower. Mine has not itched or annoyed me the way some people report.

The waiting for my rescheduled surgery was clearly the worst part of process. After 48 hours the sternum pain required almost no pain meds and just gave me minor muscle aches in my chest.

Eleanor R I had a similar event, still on for the same day, but advised on Friday that it would no longer be top of the day, as the surgeon had an emergency surgery to ... Read more

Eleanor R I had a similar event, still on for the same day, but advised on Friday that it would no longer be top of the day, as the surgeon had an emergency surgery to do at 7am. I went at 11. Several of us have been delayed by a week or more, with good results, but I do sympathize with all the preparations, especially getting your mind around it, then have a delay or relaunch. Your surgeon seems very skilled if he also does transplants, so sounds like you are in good hands. Mine too does the broad spectrum of heart surgeries, and I chose him for that. Best wishes to you Lillian. Eleanor

Olga Landry I am sorry to hear your surgery got bump, especily when you were so close ready to go in.
My surgery already got bump once.
I was told by my surgeon as well ... Read more

Olga Landry I am sorry to hear your surgery got bump, especily when you were so close ready to go in.
My surgery already got bump once.
I was told by my surgeon as well my surgery might get bump because of emergency.
Best wishes Lilian,

Olga Landry I am sorry to hear your surgery got bump, especily when you were so close ready to go in.
My surgery already got bump once.
I was told by my surgeon as well ... Read more

Olga Landry I am sorry to hear your surgery got bump, especily when you were so close ready to go in.
My surgery already got bump once.
I was told by my surgeon as well my surgery might get bump because of emergency.
Best wishes Lilian,

Lillian Mark My sister works there as cardiac nurse specialist ........she told me the emergency thing happens often.but REALLY, my alarm clock was still on set for early ... Read more

Lillian Mark My sister works there as cardiac nurse specialist ........she told me the emergency thing happens often.but REALLY, my alarm clock was still on set for early morning to go to hospital.....it beeped 5 1/2 hours later (after call from hospital regarding emergency issue).I never went back to sleep. Yes, it as so close.

Mary Myers Lillian, I actually was hoping for a mitral repair. My surgeon ended up doing a mitral valve replacement. The valve was so calcified due to me having rheumatic ... Read more

Mary Myers Lillian, I actually was hoping for a mitral repair. My surgeon ended up doing a mitral valve replacement. The valve was so calcified due to me having rheumatic fever as a child. I have an bincisdion under the right breast, and in the groin area. I am five weeks postbop today. I am doing very well. Have been off pain pills for at least two weeks. Will start cardiac rehab soon. My cardiologist said, I was doing so well that I probably did not need cardiac rehab. I insisted that I need it bto gain the confidence to work out at gym again. He agreed and said great idea. Stress test is 9/10. Then should start the cardiac rehab. I am looking forward to it. I am returning to my job as preschool teacher for about five hour shifts a couple of days. My walking isd great. I am sleeping well and breathe better and do not have the heart fluttering that I had. Am very glad that I went ahead and had surgery done. Lillian let me know if I can help you answer any other questions you might have. You are in my thoughts and prayers. So glad you got to have a mini vacation. Its good for your heart. Have a great night! Love Mia

Clare Auten Hi. My surgery was in Jan. I had a full sternum cut. I know my almost five year old and I managed at the house alone about 10 days after surgery. I did not ... Read more

Clare Auten Hi. My surgery was in Jan. I had a full sternum cut. I know my almost five year old and I managed at the house alone about 10 days after surgery. I did not feel normal and napped during preschool programming. I was able to make us breakfast, lunch and do very light chores. Your surgery day will be my 8 month mark. Last Saturday I walked 8 miles and mowed the yard. I was a little sore Sunday, but I think that was too be expected. You can read my journal if you want more particulars. Clare Auten

Tom Elliott Hi Lillian. I'm also going to have the full sternum cut. ("The whole nine yards" as I sometimes think of it, although I guess it's more like the whole nine ... Read more

Tom Elliott Hi Lillian. I'm also going to have the full sternum cut. ("The whole nine yards" as I sometimes think of it, although I guess it's more like the whole nine inches.) My surgeon thought he might need the extra space, especially since he may do a little touch up on the tricuspid as long as he's in there. One helpful thing that he said to me is that the sternotomy may prove less painful for some people than minimally invasive procedures that require a number of cuts through muscle between the ribs. There's not that much muscle or other tissue that they have to get to before they get to the sternum. Obviously, I'm not speaking from personal experience, so that could just be something he tells people to make them feel better ;-)

Michael Meyer Lillian:
I had minimally invasive surgery. I had chronic pain maintenance as some our friends have alluded, they disturb/cut the intercostal muscles. This ... Read more

Michael Meyer Lillian:
I had minimally invasive surgery. I had chronic pain maintenance as some our friends have alluded, they disturb/cut the intercostal muscles. This surgery was more painful than I anticipated, but my pain always managed. I could in theory drive after two weeks since I did not have a sternum repair, but I was still on narcotics so I delayed any driving till week 4.

I started rehab in week 5-6 like many others. My weight lifting restrictions are less prohibitive than a sternum repair. The pain subsides significantly after week 4 with the minimally invasive repair.

I still have numbness in my right pectoral muscle. I of course had several small incisions and I was placed on warfarin for 6 weeks after surgery as a precautionary measure for a stroke TIA. Managing the warfarin was a losing battle for me it was either too high or too low, never in the correct range. The minimally invasive procedure was the correct procedure appeared to be the correct one for me, but this will differ for patients and surgeons.
Michael Meyer

Michael Culpepper Lillian -

I, too, had the minimal invasive procedure, almost exactly as Michael describes above. My surgery was 11 July to repair mitral valve plus a Maze ... Read more

Michael Culpepper Lillian -

I, too, had the minimal invasive procedure, almost exactly as Michael describes above. My surgery was 11 July to repair mitral valve plus a Maze procedure. I was in hospital 7 dYs, the standard German protocol. Came home 18 July. I must say I never had pain, no narcotics, and no real complications. I went ba k to work after just over 6 weeks at home, on 2 Sep. While at home, I walked just about every day, building up to about 5 miles in a bit less than 1.5 hours. Like Michael, I still have some numbness in the right pectoral muscle, but it seems to be getting better. Sleeping was a challenge for the first week, but stayed in bed, not in chair. After about a week, I was able to turn on my side and sleep normally. I go foe my "90 day" echo the last week of Sep. Hoping to get free of the meds then and get release to start jogging and running. My current meds are coumadin, a Bp med, a diuretic, and a stomach acid inhibitor. BTW, I am about to turn 64.

Bottom line: My recovery has been near perfect. I know oghers have not been quite so fortunate, but I just want you to know it CAN be relatively stress free.

Best wishes to you.
Michael Culpepper (Mike)

Lillian Mark Wow, okay......thanks for all the insight. I have had more than several abdominal open surgeries. I am mostly numb there, but had lots of muscle and insicional ... Read more

Lillian Mark Wow, okay......thanks for all the insight. I have had more than several abdominal open surgeries. I am mostly numb there, but had lots of muscle and insicional pain.i still feel pangs where the nerves are "waking up". Anyway , I was told what you mentioned that it is less painful when they go in the sternum. My sister is a cardiology nurse and when she told me that it is not so much the pain like going through muscle. I liked the comment "the whole 9 inches". Thanks so much for the information everyone. !!!!! ! I will go back and read so more of your stories💟

Eleanor R Hi, Lillian. I just want to wish you well on your upcoming surgery. I hope it turns out to be what my surgeon termed "uneventful". I thought this was a pretty ... Read more

Eleanor R Hi, Lillian. I just want to wish you well on your upcoming surgery. I hope it turns out to be what my surgeon termed "uneventful". I thought this was a pretty lame description for something rather marvelous in technique, but he said "uneventful" is what every surgeon hopes for. He then said "it was textbook". I guess I wanted to hear him say it was the greatest surgery he'd even done! Anyway, I hope you have no other "events" and that the recovery is smooth for you. As for myself, I never had pain at the incision. I had the mini sternotomy, and while it was swollen (like a goose egg!) and bruised, it never hurt. What did hurt was while the chest tubes were in, one apparently had touched a nerve and that was painful. Otherwise, just twinges. I remember more being tired and kinda "blah" the first couple of weeks after surgery. I am now at week 8 and doing great, driving, cleaning and cooking (not doing so was good while it lasted), and most of all, I now can do things even at 8 weeks which used to be a problem. Looking forward to doing much more in cardiac rehab, and wishing you the very best on your own journey. Eleanor

Terrie Syvertsen Lillian- I want to wish you all the best with your surgery tomorrow. I also had the full sternotomy and it wasn't as painful as I had imagined. It isn't to ... Read more

Terrie Syvertsen Lillian- I want to wish you all the best with your surgery tomorrow. I also had the full sternotomy and it wasn't as painful as I had imagined. It isn't to date actually and just the fact it is right there in front gives you the feeling of just being irritated by a new "ache" more than anything. When the tubes come out it is easier and just something that you will adjust to but Lillian you will be so glad the operation is over and you are going to be on your way home that you will just run with it. The happiness of being on the other side is great feeling and you seem to have been keeping a very positive outlook up until now and I don't see that changing so use your great inner strength and know that you are going to do well. (I haven't been writing to you as I just got out on the 25th. and had to make adjustments like we all have and sitting at the computer wasn't easy up until a couple of days ago. I have been following your journal and story and want you to know that as you have seen and read you have many people out here following you with prayers and well wishes for tomorrow so carry those thoughts with you as they wheel you in! It is most important that you have such confidence in your surgeon as this is upmost important. I remember my surgeon in his blue garb with his little hat and his great big smile, HUGE smile and his giving me the thumbs up sign and asking me if I was ready as if it were this morning! I know my last words were that Yes I was and that I had complete confidence in him and "MY" team. HE grinned and the next thing I new I was in another room and the healing had begun! It will be something wonderful like this for you too! So good luck as Eleanor says on your own Journey as each of our journeys is our own unique experience. We are all with you in spirit . Take care Lillian. Terrie

Mary Myers Lillian, am happy in that you finally got the approval for the surgery. I am confident that you will be in good hands with the team of surgeons that you choose. ... Read more

Mary Myers Lillian, am happy in that you finally got the approval for the surgery. I am confident that you will be in good hands with the team of surgeons that you choose. I know this is a lot to digest but you are strong and will get thru this journey. Before you know it you will be home sweet home and b healing. Have a great night. Write when you can. Your heart sister Mary (mia)

Michael Meyer Lillian:
Did a little research for you. See the attached link. The mitral valve repair may be more complicated, but that is what these great surgeons do. ... Read more

Michael Meyer Lillian:
Did a little research for you. See the attached link. The mitral valve repair may be more complicated, but that is what these great surgeons do. You will find some other references that may lead you to some second opinions. I would not hesitate to ask for more rather than less information so that you are comfortable with the path forward. Any physician would do the same.
Michael Meyer


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3856991/

Lillian Mark THANK YOU for taking time for research and posting. I Today I received a 2nd opinion....actually my third thoracic surgeon. All gave same philosophy and protocols. ... Read more

Lillian Mark THANK YOU for taking time for research and posting. I Today I received a 2nd opinion....actually my third thoracic surgeon. All gave same philosophy and protocols. I have researched it online, and was educated at the hospital yesterday about Barlow's disease. I wondered if anyone here had personal experience directly or indirectly with the. disease. I did not feel any shock or disappointment regarding the news of my DX. I know i had severe damage to several other organs too decades ago during bacterial endocarditis. That is why we sought out a surgeon who performs repairs on very sick valves and has several techniques and colleague support. The opinion today confirmed that different surgeons see things similar. Today was another very long day at another clinic and more pre op labs and fighting insurance. AND WE WON our second attempt at reversing the denial of benefits. So, we are covered for the surgeon and hospital and the tests they also had denied benefits. Now we wait to see if insurance wants us to change the date. It has been another long hard day and my breaking down into tears as it is just too much . thanks again and healthy wishes for all

Eleanor R This is great news, Lillian. I am so happy for you that the insurance is going to cover the operation you need and the surgeon you want. What a relief! I ... Read more

Eleanor R This is great news, Lillian. I am so happy for you that the insurance is going to cover the operation you need and the surgeon you want. What a relief! I will be keeping you in my thoughts and prayers for a successful outcome and speedy recovery. Best wishes, Eleanor

Eleanor R This is great news, Lillian. I am so happy for you that the insurance is going to cover the operation you need and the surgeon you want. What a relief! I ... Read more

Eleanor R This is great news, Lillian. I am so happy for you that the insurance is going to cover the operation you need and the surgeon you want. What a relief! I will be keeping you in my thoughts and prayers for a successful outcome and speedy recovery. Best wishes, Eleanor

Terrie Syvertsen Hello Lillian. Terrie here. I really want to take the above photo and do a small 4x6 carving of him for you to use as a "card" if it is ok. His expression isn't ... Read more

Terrie Syvertsen Hello Lillian. Terrie here. I really want to take the above photo and do a small 4x6 carving of him for you to use as a "card" if it is ok. His expression isn't the cutest. I can see a bunch of other "buddies" photos being subjects soon! Eleanor are you listening? Take care Lillian, I am watching you!!! Love, Terrie

Lillian Mark Neat Terrie. What do you mean not cute expression and other buddies line up.I am okay with whatever you like to do. YES, I will be able to hold him!! Actual ... Read more

Lillian Mark Neat Terrie. What do you mean not cute expression and other buddies line up.I am okay with whatever you like to do. YES, I will be able to hold him!! Actual Cuddling might have to wait as he uses my torso as a spring board........oh well lol

Mary Ellen Doherty I too am having trouble finding everyone. I'll continue to try to find a way to navigate the site, but it's been very frustrating. I'm doing well, starting ... Read more

Mary Ellen Doherty I too am having trouble finding everyone. I'll continue to try to find a way to navigate the site, but it's been very frustrating. I'm doing well, starting to regain some energy, but it has been very slow going. Feeling good otherwise. Took my first walk outside yesterday with Gerry. Hoping to improve on that a little today. Slow but steady! Terri -hope you are doing well. Looking forward to talking to you when you are up to it. Mia - I have lost you completely. Hope all is well with you as well. All of you who offered help, suggestions and support, Thank You. Hoping I'll find the key to this new site. Mary

Adam Pick Hi Lillian and Mary, Thanks for sharing your challenges regarding the new website format. Fyi, we are continuing to make several changes to enhance your ability ... Read more

Adam Pick Hi Lillian and Mary, Thanks for sharing your challenges regarding the new website format. Fyi, we are continuing to make several changes to enhance your ability to find the wonderful people in our community. I thank you for your patience as we work through some unexpected issues connected to the relaunch. Thanks, Adam

Eleanor R I hope you are feeling better Lillian. It is difficult enough to go through planning for surgery, deciding when, which surgeon, which valve, without having ... Read more

Eleanor R I hope you are feeling better Lillian. It is difficult enough to go through planning for surgery, deciding when, which surgeon, which valve, without having insurance problems get in the midst of all of this. I do sympathize and hope that by now things will have sorted themselves out. I wish you the very best with your surgery and recovery. Eleanor

I keep putting my email into each persons journal to follow them but I'm still not getting notified when they post . But I think that only lets me know when ... Read more

I keep putting my email into each persons journal to follow them but I'm still not getting notified when they post . But I think that only lets me know when they post on my journal not when they post on the site :( hopefully things will get easier to find people we follow .

Lillian Mark Lynn, I will keep searching you out. I feel very lucky with your understanding some of my extra obstacles. I hope so very much that you are getting close to ... Read more

Lillian Mark Lynn, I will keep searching you out. I feel very lucky with your understanding some of my extra obstacles. I hope so very much that you are getting close to those days of happiness, family and laughter. My mental health therapist and I are making plans for my reactions to trauma and stress. (((((Hugs)))))...just one you know , your keeping in touch and caring means a lot...you are indeed of help. Thank you!

Lillian Mark MAry, Wow!! Outside. I hope the weather was very pleasant. I am curious how long after surgery that I I'll be blessed to walk outdoors just on driveway first. ... Read more

Lillian Mark MAry, Wow!! Outside. I hope the weather was very pleasant. I am curious how long after surgery that I I'll be blessed to walk outdoors just on driveway first. Last year after colon cancer surgery. ...when I was about to walk down our short driveway in beaut autumn weather, I had an unexpected surprise. I barely got out the door and I felt a painful POP ON top of my exposed foot. I looked down and before my eyes a purple egg sized lump rose up.we went straight to Emergency .They checked it out. It was a popped vein. A couple days earlier while not fully alert and still inpatient, the docs were tying to find a location on as I needed emergency blood transfusions. Well they nicked one in my foot that I was unaware of. I tell ya.....i am definitely not new to serious medical procedures and complications, but this was an odd one. Keep posting and walking💟!!

Mary Ellen Doherty I had surgery on the 15th and home on the 21st. I have been walking in our apartment building working up to a total of 27minutes as of today. BUT, the weather ... Read more

Mary Ellen Doherty I had surgery on the 15th and home on the 21st. I have been walking in our apartment building working up to a total of 27minutes as of today. BUT, the weather here is beautiful, Indian summer, so we walked outside yesterday in addition to my regular walking three times a day.

Mary Ellen Doherty Walked outside again this morning and if the weather holds, will again this afternoon. My energy level is very low today, so it's a struggle to maintain the ... Read more

Mary Ellen Doherty Walked outside again this morning and if the weather holds, will again this afternoon. My energy level is very low today, so it's a struggle to maintain the walking. Once you realize how important the walking is,to your overall recovery, you just have to push yourself through those down times. Stay positive, move as much as you can but within your parameters. Here's to you! Mary

Lillian Mark Thanks for responding. I hope it keeps going your way. I have a balance disorder that combined with a bleeding disorder is a daily issue...........i like to ... Read more

Lillian Mark Thanks for responding. I hope it keeps going your way. I have a balance disorder that combined with a bleeding disorder is a daily issue...........i like to be active so I hope having my husband or sister or sons, I can walk up my strength safely even on those slower days. Keep it up, your words sound very positive☺☺

Mary Myers Lillian, thinking of you as you approach your big day. It is normal to get emotionally overwhelmed. Try to focus on positives . I am almost four weeks post ... Read more

Mary Myers Lillian, thinking of you as you approach your big day. It is normal to get emotionally overwhelmed. Try to focus on positives . I am almost four weeks post op. Started driving again, am doing fantastic. Will start cardiac rehab in a few weeks. I need to have a stress test first. Keep us updated on your progress tomorrow. Hoping and praying you get approval for insurance to cover the surgery.
Hugs from your heart sister, Mary (mia)

Wow! Another test without sedation ! You astound me . I don't know if I could ever do that. Yes, all these things that are happening to you are beyond stressful!! ... Read more

Wow! Another test without sedation ! You astound me . I don't know if I could ever do that. Yes, all these things that are happening to you are beyond stressful!! So be very gentle with yourself . I'm really hoping you can get a break soon . I know I'm praying things start to run smoother for you . I wish I had something to say that could help but all I have to give is my understanding and to let you know I care!! Hugs,Lynn

Olga Landry Hello Lillian.
I just read your post. I had my Cath on Aug 6 and I am having my surgery on the 8 of Sept. When they did my cath in the groin they found out ... Read more

Olga Landry Hello Lillian.
I just read your post. I had my Cath on Aug 6 and I am having my surgery on the 8 of Sept. When they did my cath in the groin they found out the vain was damage from other cath in the past. It also took my groin a couple of weeks to heal.
The doctors had to through my neck.
I spoke to my cardiologist on Tues and he told me 3 to 6 month then I got a phone call from the surgeon on Wed the next day( this past week) that they can do the surgery in the 8 of Sept. That was a big surprise. I went to the dentist on Fri. I have to get a holter monitor this Tues till Thurs. then a week Thurs I have to get a Lung test.
I hope it will all work out for you your insurance wise. In Canada we don't have to worry about the insurance. The health plan pays it all.
Good Luck with everything. I hope I wasn't to long winded.
Hope to hear from you.
Take care
Olga

Lillian Mark Thanks Olga, I will keep checking on you.you were nit too long on your post. Insurance still a mess. Tomorrow I gave the big pre op day. Then the following ... Read more

Lillian Mark Thanks Olga, I will keep checking on you.you were nit too long on your post. Insurance still a mess. Tomorrow I gave the big pre op day. Then the following say I see the surgeon that is not qualified...doesn't have resources to deal with a liability like me..... i am glad things sound to be going well so far. Keep in touch💟