Debby's Guestbook

Hi Debby, I enjoyed reading your story. I\'m pretty much in the same situation as you (only 10 years older). It must be disappointing to not get your running endurance back now that you\'re \"fixed\". I\'m sort of hoping me repair will fix all the problems in my life....do you think that\'s expecting too much? :) Your boys remind me of mine ten years ago....keep up the hugs as long as you can, it won\'t be long before they come once in a blue moon. Love your dog too! Take care, Nancy B

Debby, So glad you are on your way to total recovery. Sounds like like you and your family are doing well. Best wishes in your continued health. Vickie Cain

Hello Debby where was your surgery done? Let me tell you about my story, I live in Chino California and last month I was told that the only way to fix my valve regurgitation was by open heart surgery only, today I had an appt. at USC with Dr. Starnes and he told me that I don\'t need to have open heart surgery, he can repair my valve using minimally invasive. thank you Marina Becra

Hi Debby – My name is Darlene Nowak-Baker (age 46) and I had a mitral valve repair on Sept 2nd at the Cleveland Clinic with Dr. Sabik – When I read your posting it was as if I was writing my own (including the fact that I had ventricular tachycardia) – It is funny how you think that you feel pretty well so …. Do I really need this surgery ??? It isn’t until you have to face reality that your body isn’t performing quite the way that it should and Yep …. surgery it is !!!! I was fortunate and I had minimally invasive surgery (mini thoracomoty) – Everything went very well and I am grateful for that – based upon your dates it appears that I am just a little ahead of you along the recovery path – It must have been nice that you had “family” at the hospital to help ease your questions and help you through the process :) I have been walking around the neighborhood with my dog … I am not breaking any records but I am able to enjoy the fall days in Michigan !!!! Today was a fun day as I went out with my best friend and had a mani/pedi --- nothing like that to make a girl feel great !!!! I guess that is when you know that you are starting to turn the corner !!!! I am glad that you are off all of your pain meds --- I too share that accomplishment as well as still being on a small dose of the beta blocker – which I too hate for the exact reasons that you described!!!! One day we will be off of these and it will be time to celebrate :) Well I have taken up enough of your journal !!!! Everyday gets better --- If I can answer any questions for you or if you want to chat my e mail is lov2boat@comcast.net Darlene Nowak-Baker

Congratulations Debby! You are on the other side. It is sometimes a slow road to regaining strength, so be very patient, it will happen in its own time. I am on my 11th week post op. I did too much last week, and had a cascading muscle spasm starting in my shoulder or collarbone muscles, and cascading around to my sternum, and in the muscles between my shoulder blade. Moms tend to carry lots of stuff (laundry, gardening, cooking pots, groceries, stuff strewn around the house, etc.) My advice is to listen to your caregivers/rehab people, don\'t rush, listen to your body. (I slept 4 days in the recliner with the back, only one day after surgery, but I loved the recliner during the day while healing, watching cooking and gardening shows. I needed to rest daily.) I had a bit of regurg too post surgery, and was told this was expected to heal away. I go in for my 3 month echo in a few weeks, so I\'ll let you know. It is a hard thing you are going through. The dangerous part is largely over. I can only advise you to keep your chin up when it seems like healing is reaching a plateau. It gets better. I could sleep on my stomach by week 8, and take a bath, and open heavy car doors, and crack my own water bottles. All milestones. I go to rehab 3x week now, and I\'m the only young person. I recommend massage for back and muscle pain, and even loosening up the scar tissue and adhesions you may have. I go 1x/week. Happy healing, it gets better. -Jennifer Turner

Hello Debby, I had my surgery for an aorta replacement about 55 days ago...I also had severe regurgitation. I was in ICU 8 days as well. Just last week I was able to go out and take a walk by myself!!! IT WAS AND IS GREAT!!! Keep in mind there are a lot of bumps in the recovery journey BUT ALWAYS REMEMBER that each week you get stronger. My prayers are with you. JOHN MADONNA

Dear Debby, So glad you shared your story with me. It\'s amazing what your going through and how great you look! I am happy to help out in any way I can. I\'m glad you\'re getting the surgery done. Sooner the better!!! Thoughts are with you, Steve, the kids, and Sandy!!! Wendy

Hi Debby... thanx for the quick response & clarification. I was thinking since I have heart failure & am an \"at risk\" patient , the robotic approach might be less hard on me, but now not so sure!! Guess I will wait & see what my new doctor has to say tomorrow. I see that I forgot to tell you my name... it is Sunny.

Hi Debby.... I was thinking how fortunate you that they have caught this problem NOW! I am 72 & they kept telling me the leak \"is not that bad.\" Finally a new doc ordered a stress echo & with exercise the pulmonary pressure went to 90! I hope it is not too late for repair. I am going to a surgeon in Portland tomorrow w/ my daughter along to help me remember what stress will help me forget!! He specializes in High risk patients.... I also have heart failure . I noticed somewhere in your journal about the robotic procedure including a longer time on heat lung machine? We are trying to learn what we can about different approaches & if they help A-Fib ( another problem related to my MV regurgitation) So much to learn!! Even tho you don\'t feel all that symptomatic, I think it is far better to get it fixed before you end up with multiple symptoms... like me.

Hi Debby. You are one brave, smart gal. I too used to wonder if I really needed surgery when I was feeling OK. But you are right about getting it done before a repair becomes a replacement. And before there\'s irreversible damage to other parts of your heart. MV repair for regurgitation while asymptomatic restores normal life expectancy. That\'s what I latched on to. What a deal! -- DVB

Dear Debby, I think you were my guest today(no name), and I forgot to tell you some other hints that helped me a lot post surgery: 1) Breast reconstruction sleep bras from Sears, made from Cotton stretchy material, and hooking in the front, no underwires, called Dr. Rey sleep bra, you can get online. I bought 2 different sizes larger than my size (I tried on in store), and the ONE size larger was correct, as you need to minimize movement of your breasts, but have enough slack around your rib cage to be comfortable (I imagine your rib cage will be sore too in a different spot.) The 2 sizes larger just didn\'t provide enough support to keep things not moving. Your minimally invasive wound is definitely different, but ask the nurses with a phone call. This would be a pain to arrange after surgery. I ended up buying five, I try to have clean bras daily, as the wound is unbandaged (steri strips first 2 weeks), and I just wanted clean things touching my wound. You get sweaty walking your 2 walks... 2) Front buttoning shirts. You are just sore afterwards, and I don\'t know about your surgery, but I suspect you will still have mischief with your chest muscles, making moving your arms above your head painful at first. I just like the convenience and ease of my cheapie Target blouses. I also bought a lot of stretchie yoga capris and shorts, as I knew these would be more comfie in the recliner. They were nice too. I fell asleep in the recliner, and liked the PJ feel of my oversized button front tops (for comfort, I planned no binding up while napping) and stretchy pants. (I also bought button front cotton jammies at JC Penney, which are comfy, and I love.) 3) I used my sleeping wedge, purchased from the Mayo clinic store(they have an online store, I think), every night for the past 7 weeks. I just stopped as my ribs feel somewhat healed, and I don\'t have to exclusively sleep on my back. You will need to sleep on your back, and the wedge helps the downward painful pressure on your ribs and lungs ease up. I\'m not sure with your wound, but I imagine you will still need to sleep on your back. I cradled my head with a down pillow, and softened the wedge with a folded up down blanket on top. This setup was very tolerable. 4) New washcloths used exclusively for your wound washing (I used white and bleached these and some old white towels to dry off with, daily, careful to dry off my wound first) and some dial antibacterial soap for wound. This is what they recommended at the Mayo clinic, so I followed orders for more than a month with the soap, and still used bleached fresh cloths and towels daily. 5) Shower chair and handheld shower attachment, if you don\'t have one. I love this setup, very relaxing, and necessary at first. 6) Lots of Tylenol. Super sized. I think that\'s my latest list. You do need to get your heart repaired sooner rather than later, I\'m sure. I was asymptomatic too until about 2 months prior to surgery. When I got my presurgery echo at the Mayo, they said I got there just in time. (I wondered if I was jumping the gun too, I\'m so glad now I went ahead with the surgery.) I hope you will be too! Hang in there! -Jennifer Turner

Dear Debbie, It\'s Jennifer again. You signed my guestbook yesterday. I just wanted to reassure you that Dr. Starnes is a WONDERFUL choice, according to my best friend\'s superstar heart surgeon husband. He recommended Dr. Starnes for me. (I was in their wedding too, so can\'t kill the bridesmaid! HA!) Also, they thought I had a chord that was broken, and I had some almost fainting episodes this spring (missed shy son\'s singing solo to run out of auditorium for air and water...I was teary and knew it was probably time, had been watching for 6 years with echos too...) My heart valve was trimmed and sewn, and a partial ring was sewn in to cinch in the valve, and it went very well. Only a little regurg w/ echo 2 days after surgery (echo didn\'t hurt, don\'t panic like I did), and they expect the surgery to disappear with healing. My heart goes out to you, this is so hard for young moms. (It still is, I\'m not going to kid you, but it is not scary hard, just frustrating-can\'t-pick-up- the-heavy-stuff hard. We moms do a LOT of heavy lifting. Bummer.) Hang in there girl. You have a wonderful surgeon. Round up reliable CONSISTENT kid and house help. I also reorganized my shelves, closet, and drawers so I could not have to lift my arms high. Kinda helped at first. You just can\'t bear weight, and no way with weight up high. I got a Golden automated recliner. You can search online. Expensive, but they have 4 sizes for different heights, and infinite positions, unlike Lazyboy (second best). Macy\'s had a couple good cheaper automated recliners. I Love my chair. You can\'t manually operate recliners post surgery, so somebody will have to get you in and out of manual chairs, not great when you have to go potty (and you need to keep hydrated!) Keep your chin up. You are doing the best thing for the family getting fixed. You are doing what I just did. I am so glad I did it! Also, the tubes, IVS, machines, etc. sound scary, and I\'m a wimp. But they didn\'t bug me (I\'m very tactile sensitive too, so big wimp). They come out fine, and the pain meds make me not really get bugged by mine. I had one chest drain, and one set of pacemaker wires, and a neck line, a couple of IVs, and a urinary catheter. I could have lost a lost of the paraphenalia by the 2nd or 3rd day if I didn\'t have a low blood pressure issue, but I got most out by 4th day, and it really didn\'t bug me (except the catheter by day 3, and my body was preparing to have a suprise period...FUN. And I used pads- my choice, and the nurses helped). So just hang in there. It will be OK. You have made great choices, and September 13 pm will be the best day ever!!! Take care of yourself. :) Jennifer Turner

Debby, I did research...so glad I did...probably the best decision of my life was to go to Cleveland Clinic for my mitral repair valve job...a bit of a trip from Albuquerque for my March 11th surgery with Dr Mihaljevic & Dr Gillinov, but, believe me I woudn\'t be frustrated with my 5 K (3.2 mile) run time in about 95 to 100 degrees last Sunday not being as good as my 5 K run time on May 1st, belly aching that I haven\'t quite made it all the way running up a particular mile long hill without any walking yet, and I never would have had, on April 17th, wet eye rushes at least three times as I began the bike portion of the Triathlon at Ft Lewis College as I looked over those snow capped mountains in the distance and was so thrilled to be able to be there doing what I was doing, the bike portion being after I crawed out of the swim part with a whole bunch of people applauding after someone overheard me tell the other person in my lane, as we waited for the start, that I had open heart surgery about 5 or so weeks prior, this being maybe a week after I rode my bike for 50 miles one day about a week before (it was a very flat course) ....never could have done it had it not been for the type procedure I had at CC and the care I got there. Even with my tri-swim shorts on, they had to look in the right place to even see where the minimal scars were. Yep, you can tell I recommend CC. Search Anne Shannon on HVJ and see what she has to say. ...Barry on the mtn in NM

Hi Debby. I had my mitral valve repaired at UCLA in April and it was a magical experience. You can Google their contact info. They are in the top-10 nationally. Be sure to stack the already wonderful odds in your favor by choosing a hospital that excels in mitral valve repair. Centers of excellence have greater than 90% valve repair vs valve replacement rates, so be sure to ask what their repair success rate is when interviewing surgeons/hospitals. Best wishes -- DVB

Hi Debby, We really are in the same boat. I still want to hold off on the surgery as long as possible. According to my cardiologist, everything besides the mitral valve is normal with my heart. It\'s funny you mention your parents. I always have thought that it was strange that I have an identical twin with a healthy heart. Some of my previous cardiologists have insisted that it is a genetic, but I know that it can\'t be (we even have had our DNA tested). It\'s all really interesting to me. I hope you can continue to be simply watched for the next decade or two. Take care. Chris O.

Hi Debby, You posted in my guestbook, so here I am in yours. Which leaflet of your mitral valve is it? Posterior or anterior? Posterior is the most common and most easily repaired. The surgeons at the Cleveland Clinic advocate early repair, even before the patient has symptoms. This, of course, prevents damage to the heart and makes a repair more likely. I have had mitral regurg. since my late 20\'s. I\'m now 64. In my 30\'s I had horrible chest pains, palpitations, you name it. Then it all went away and I was fine for many years. Over the past few years I had developed fatigue, but attributed it to being older and out of shape. My doctors said I had chronic fatigue. HA!!!! Then suddenly I began devoping shortness of breath on exertion and I just KNEW something was wrong. Sure enough. My regurg. is severe and causing my symptoms. You can go out to the Cleveland Clinic for a cardiac consult if you like. I saw Dr. Brian Griffin and love him. Or you can go ahead and schedule a consult with Dr. Gillanov. He is scheduling 3 months out. Or you can request an online consult. You might want to do one of these to see when they feel surgery would be recommended - just to be sure you don\'t wait too long. My surgery is April 21st with Dr. Gillanov. If I can answer any questions for you so far, please feel free to ask or email me directly. ruthjohnhowell@gmail.com Ruth Howell

Hi Debbie, I was wondering how high your pulmonary artery pressure has been. I just recently developed pulmonary hypertension and I was on an online webchat with the Cleveland Clinic. During that chat, my question about getting a second opinion with a diagnosis of mitral valve regurgitation and pulmonary hypertension and was suprised when the answer came back that the time for surgery was now and I should have it withing 3-4 months. I am now waiting for my appt on 8-3 with the surgeon from the Cleveland Clinic. (note: my cardiologist wanted to continue to treat me with medication and I was not happy with that). Linda Stahl

hi, im 47 and i had my surgery back in sept 08. i was diagnosed 5 years before my surgery and i was told it would be 20 years or so into the future ! i also was born with it and noticed twinges when i over excerted myself too.never knew what it was though.i agree its scary when it comes up fast like mine did. but better than thinking about it for another 15 years and you never know what your health could be like in the future. youre strong now.its for the better. if you have any questions dont hesitate to email me at jeffstoveken@yahoo.com jeff

Hi Debbie I went through a MVP repair Oct/09. Good for you for being right on top of things. You have to know your own body and recognize all the warning signs. This is a good place to sound off. Cheryl, Ontario

Hey Debbie, Thanks for signing my guestbook. Waiting definitely had a certain unnerving feel to it. I hope your valve stays the same for many years! Patrick