Sommer's Guestbook

Air hunger can be caused by 1 lung inflating less than the other, if at all. This can be caused by nerve damage when cooling the heart with ice to stop it beating prior to surgery. Please ask your cardiologist about it. This problem may have been noted on chest x-rays taken since surgery and you were never told. I hope your air hunger decreases with time.

Hey Sommer Happy New Year! Ive been meaning to check in on you but the holidays and new position got the best of me. I see you are on the recovery road! Have you had any luck with the shortness of breath? I hope they have got that figured out and amen to no more chest tubes. God I hated that thing!

Wrap you in our prayers, Sommer. The doctors will figure it out. I had terrible time with one med. So bad I couldn't move and they thought I had a stroke. Yipes ! Most of us have a "story". Really hope you do not need tube, but sometimes we have to do what's needed. You look great and THE SURGERY is over. Yea !

Sommer- how are you? Thinking of you and hope your recovery is going smoothly. Our surgeries were the same day so I think of us as “sister heart warriors”😊 I came home on the 9th after 11 post-op days in the hospital, six of them in ICU, so a little bumpy. But now that I’m home I’m sailing into recovery. Hope it is the same for you! You’re in my prayers.

Hi Sommer, Been thinking/praying for you. Know you have your hands busy with kids and healing, but if you can, send a little note out to all of us who care for you that would ease our minds. So many are cheering for you. Take care and God Bless.

Hi Sommer. I was talking to Mark, another Heart Warrior, today on the phone and he asked if we had seen an update from you. Realized that you've been quiet. Praying all is going well with your recovery. Update us all when you can.

Hi Sommer, Thinking of you and hoping the time goes fast for you and your healing. I am in 4th week and 4th day. Stick with it and when you approach approximately this time, you will be amazed at how much progress you made. Went from needing help the 5 steps from bed to bathroom in hospital to walking into hospital front doors, up elevator to 5th floor Cardio today. Yea! Then fixed a simple dinner for my husband. It will all come back. Just have patience with what my 3 yr old grandson calls the "big owie". Oh, did I tell you, I almost skipped out of the house to say good bye to him in the car . . . and I was the little old lady who couldn't make one lap around the nurse's station 4 weeks ago. You can and will do it ! Cheering for you.

Hi there Sommer, it's been awhile. I just noticed your surgery is tomorrow, you will do great and be on the way to a speedy recovery.. My thoughts are with you and your family..

Hi Sommer! Am sending good thoughts your way. My recliner arrived yesterday, and my shower chair all set. Seems I have so much to do...and trying to stay productive to keep the fears at bay. Let's get through this!!

Hi Sommer. Happy to see so many people cheering you on. It won't be long now and the waiting will be over. As most have said, "that is the worst of it". My AVR was Nov 1 and it's getting better each day. Had years of decline in energy so I am a little slower to bounce back. I am walking, showering, getting tea, coffee and simple meals, caring for clothes, etc. You will run circles around me at 73. The cardiologists I met are no nonsense, focused and highly trained. They run a tight ship and anyone on their team better keep up. You will be in the best of hands. If you like, you can write things you would like a nurse to read during surgery. Most doctors are ok with someone reading your thoughts. Things like, "My vital signs will be normal and my mind will be at ease. My body knows how to shunt the blood away from the surgery site so my surgeon can work easily. Then it will return the blood when it is needed to heal. I will wake easily and comfortably. I will wake thinking of my favorite soothing food (tea, broth, etc.) so my digestive system will be ready for food." You can add anything that you may have concerns about, just make them positive. My team was happy to read them since studies at many hospitals show positive results when used. They found less need for pain meds and quicker recovery. May the angels wrap their wings around you and you know only love, support and peace each day forward. The next big sigh you hear will be from you when someone says, "it's all over and everything went well".

Hi, I am writing from England. My operation was almost exactly 8 years ago. As someone else said, the nights after the operation were the most difficult times. Think about what you could do when you lay awake. Once when I was so desperate I asked a nurse to tell me a fairy tale and she didn't know at all what I was asking for. Have soothing books with you, something that makes you think of something else than only heart surgery. I am doing so well now that I can say it was worth having open heart surgery. With lots of warm wishes and good thoughts to you, Ursula

Hi Sommer, My surgery for an aortic valve is 11/26. Keep stress down by thinking positive thoughts and having faith in your surgeon. I requested the earliest available booking so not to be waiting around. I am bringing a robe and slip on sneakers. Trying to pack light. I had the same thought about a button down shirt but am opting for a lose soft full pullover. A sports bra with back closure and a high front to protect the surgical site. From past surgery I have learned to take the pain meds and then 20-30 minutes later do your breathing exercises, get in the chair or walk in the room. It will take the edge off and someone will be with you to support you. The more you move the easier it will become. Best wishes, Darlene

Hi Sommer, I have a mechanical aorta valve, due to a congenital bicuspid valve. I was very exhausted after surgery, and it does take awhile to recovery but..... the good news is you do recover. I’ve walked /jogged some 5K races post surgery, plus go skiing and biking. I had total faith in my surgeon, knowing he does this all the time. Try to think positive. You know you’ll be so much better off having the surgery. Take care, Paula

I forgot... important, A bra that you can get into from feet up, no underwire... kind sports type with no hooks or stays. I got mine at target,10-12 bucks. I think champion brand. I still wear them!!

Hi Sommer, my Aortic Valve replacement , open heart was 10 months ago. I am a nurse and I likely overplanned. In hindsight, this was not a bad thing, because it likely helped with my anxiety prior. I journaled what I was feeling, and journaled my lists. I found that most everything that I brought to the hospital was not used. I used my toothbrush, my brush, moisturizer for my lips and body. If your hair is long, braid it or bring ties. Your hair can get involved in the IV and leads and tape and just tangle. I was tired and rested between walks. The nurses keep you busy. The one thing that I didn’t have was a eye mask to block out light for my husband to sleep at night. Slippers, bring. Robe? Maybe. Your focus will be on the task at hand, getting well and getting home! Most important, bring your husband or sister or mom or bestfriend!! I made a list of all the people to contact following and my husband did that for me. I was wrapped up in the warmth of their love for me and all of the prayers sent for me!!!! When I woke up, my husband was there. I was briefly aware of the vent. An anesthesia friend told me , don’t try and talk. This will make the awareness of any tubes more so. I had a deal with my husband. He was to tell me my condition and I would shake my head yes if I felt ok and no , if not. It was yes all the way and tubes were out pretty quick. I felt safe. I felt strong. I never felt scared. Once home... button up pajamas, I wore for a few weeks and loose pull overs. You are not to put arms over head for a few weeks, I believe. I had a good wedge, not a recliner and it was great. It adjusted to different heights. Use your heart pillow to splint chest!!! I was lucky though to have family with me for a few weeks. My friends set up an app ( Meal Train) for them to bring me dinners... definitely do this. People want to help. They also helped my husband so that he could get away from the confinement with me and they would stay with me for a few hours. I was conscious of his burn out. Anxiety.... night time. Everything is always worse at nighttime. Think of your recovery in weeks, not days. Lorazepam! Meditation, prayer... mostly reassurance, acceptance and trust, trust , trust. Be aware that the sternotomy pain is real. The need for narcotic analgesic is real the first few weeks. My husband and I wrote every dose down and gradually weaned me down a dose at a time, a week at a time. The dosing was combined with ibuprofen and Tylenol stagger. I wish you luck. The anxiety prior is so hard. Cry like a baby, but don’t stay down too long before you reach out for help. Know that you are loved. I feel really good. My life is back now and it’s behind me. God Bless. Rosemary Crane, Raleigh, NC

I HAD A TAVR AORTIC VALVE REPLACEMENT JULY 31 OF THIS YEAR. I AM 81 YRS YOUNG AND 15 YRS AGO I HAD IT DONE BY OPEN HEART SURGERY. THIS TIME IT WAS 99% BETTER. I WENT IN THE HOSPITAL ON A MON. OPERATED ON TUES. HOME THURS. I AM STILL TAKING IT EASY.. A LOT IS DUE TO MY AGE. BUT I WALK A LITTLE FURTHER EACH DAY AND I'M DRIVING, DOING MY OWN GROCERIES AND DOING LAUNDRY AND COOKING. SO I WISH YOU WELL AND I KNOW YOU WILL DO GREAT. PRAYERS ARE YOURS.

Dear Sommer, I'm so sorry about the embarrassment, it must have been humiliating. I'm glad you got a wonderful family that loves you. I want to wish you the best with your surgery and recovery.

Hi Sommer, Good luck with your surgery!! My 56 year old husband had an aortic valve replacement a year ago, tissue graft. He’s doing great now. He had radiation treatments as a child that affected his valve and prior to the surgery could barely walk across the supermarket parking lot. Within 8 weeks, he was back to work full time as an auto mechanic. He did have to have a pacemaker after surgery, which we knew was a possibility, but that does not effect his now active life, hiking, swimming, boating, etc. The most import item he had at the hospital and at home was a small pillow the cardiac unit gave him to huge when he coughed or sneezed. It was a life saver. We brought in his PJ bottoms and slippers, and his pillow from home made him a little more comfortable too. Hospital pillows aren’t comfortable. Chap stick is a must! Hospitals are so dry. As far as a recliner, we had a simple non electric or lifting that was perfect. Again, good luck!!!

Sommer, As I read your questions, many are the same I asked myself after I needed the same surgery as you. I had No symptoms of this going on, but at an annual Dr's visit, my Dr said, "Your lab results were absolutely great and I just need to take a quick listen to your heart and we will be done"...but then she asked me how long I'd had that "significant heart murmur!?" My tests reveled I had a "normal" 3 leaf valve but one was torn. Tomorrow will be my two year "still kicking" anniversary. After picking ourselves up off the floor from the news, my wife and I hit the internet trying to find out everything we could and met with several doctors for answers because my murmur was severe and I needed surgery immediately. That is how we found Adam's site here. I only opened this way to say I was in the military and returned from a deployment in 2008 with injuries and went through multiple major surgeries over the next 8 years and physical therapy, now for the rest of my life; not one previous surgery shook me as did the news from this one in 2016 after thinking we had finally "stabilized" from all the others. And this was out of the blue, as no other doctor had caught it, even as severe as it was. As other people have posted, anxiety is going to happen. As strong as I thought I could be, I allowed it to get to me by thinking about it all the time. But I turned to my anchor....God. Lots of praying and learning to allow Him to comfort you before and after your surgery plays a huge part in all this. Focus on your family, enjoy in this moment, or it will get the best of you. My wife has been a God-sent for me. Understand anxiety is going to be a normal reaction from your husband/family along with yourself. I wouldn't expect any meds before your surgery...I just got a bottle of surgical scrub solution to shower with the night before and morning of, and a showtime to ck in. Bring to the hospital...as little as possible. tooth brush/paste, deodorant, MP3 and front button up PJ shirt and change of cloth for when you are discharged...you won't be lifting your arms up high for awhile to get on any over the head shirt. Wear the hospital gown, nurses will in and out of your room constantly and there will be tubes they need to access. Don't expect any "comforting sleep" due to some discomfort and the nurses many visits in and out checking on you. My physical therapy, before I could be discharged, was to walk so many laps around the nurses station without being totally exhausted. After the fifth day they asked if I wanted to go and I said no, only because I had a four hour ride home and did not feel well enough for that. But by the next afternoon I wanted to go. Oh, and don't forget to practice blowing in that little machine they give you to restore your lung volume intake...do it as much as you can!! Once nurse ask if you want a shower, do it, even if you have the nurse or your husband just wash your hair you'll feel a little better. Forget the recliner it was a waste of money and made things worse for me. Find your favorite sheets/blankets/pillows have them washed with your favorite smelling softener and pad your couch with them and stack up your pillows so you are elevated. Learn to "roll" of couch and not just try to sit up. You'll find out fast enough your "Heart Pillow" will be your very, very best friend for the next several months...always keep it within arms reach. Lastly....Take it easy for the next several months, you have a long recovery in front of you along with physical therapy. Each Hospital is different but this is what I experienced and Baylor Heart Hospital's are outstanding. I had the minimal evasive procedure done...where they leave the lower part of sternum intact...read up on it if you have not hear about it...ask your dr if he does that procedure. We will prayer for you that all goes well and that you have a speedy recovery. God bless.

Sommer, I know how you feel, even though I am quite a bit older than you are, I had NO idea that I had a heart murmur! 2 years ago after turning 60 I decided that I better get a primary care doc. I had all the other docs, derm, gyno, ENT, etc. but never bothered with PC because I was feeling good. I’d had breast cancer 14 years ago, it was caught early so that was in the past, btw, over my left breast. No chemo, but 36 radiation treatments. Life went on and I was fine, or so I thought. I was followed by my oncologist for 10 years after and he never mentioned a murmur. He retired and went on his merry way. I went to the PC I’d decided on and she immediately heard a “very loud” murmur! I was shocked. She sent me to a cardio doc, he did a tee procedure, and recommended surgery for mitro valve prolapse ASAP! I was terrified! I had the surgery, this website was invaluable for support, and I am fine. It was painful and I had some pleurasy problems after, but that’s rare, I probably had them because I elected to have robotic surgery. In retrospect I think I would have gone with a standard sternotomy if I’d known. Here I am 2 years and 3 months later and I feel terrific! I’ve lost 20 pounds, and my energy level is good. You are going to need all the energy you can muster with three children! I love to travel, go to the gym, watercolor and I really don’t even think about the surgery anymore! I just live my life to the fullest and I am very grateful they found it! You are young, you have everything to live for and you will do great! Keep us posted! Lise😘

Friday . November 16 Sommer, My Story: 1. rheumatic fever at age of 16 . . . missed second half of junior year in high school. I grew up on a farm, and my small town provided a home bound teacher that came out to the farm a couple times a week so I could stay with my class. This was "home schooling" before it became popular. My chemistry teacher excused me from all labs. 2. mitral valve replaced at age 46 (1987) . . . Because of my age, my team recommended the St. Jude mechanical valve. The tissue valves have less longevity. I have been on coumadin for 31 years and have not adjusted my life because of it. I ride my bike, hike, and fly fish with my husband. I gave up skiing a year ago due to fear of being hit by wayward skiers/boarders. I was more fearful of bone damage than coumadin issues popping up. 3. aortic valve replaced on 6-16-2016 at age 75. I now love the number 6. This valve was replaced with another mechanical valve = ATS-AP valve. Both times I had OHS. 4. We like to travel, and we camp once every summer. I tell my husband as long as we can crawl into a small tent with our sleeping bags we are young. We just spent the month of September in Prague. 5. LOVE my two children and four grand children. 6. I live in Colorado . . . my home from birth . . . I graduated from CSU (Colorado State University) and have a master's from CU-Boulder. 6. THERE ARE GREAT TIMES AHEAD FOR YOU ! ! ! It feels good to have tender thoughts from others under your pillow each night. Put mine there, too. Judy