Michelle, pour it all out. We are right behind you, we have you covered with faith and prayers and love. Your posts are hard to read, but I want to participate in anyway I can, and I appreciate your honesty. I am proud of you, your strength is carrying me through this, too. Blessings, Puddin
Michelle, Sorry I thought my name would have been posted automatically. lol My name is Kathy Mcgeath. I remember finding this site the night or two before my surgery I was sitting in my hotel room,not sleeping reading posts of encouragement from strangers. I was so scared i could do nothing but cry and pray. Lets be honest, this surgery is scarey stuff. But it sounds like you have a great support system. Having my husband there at my side most of the first two days was critical for me. You will need an advocate. But seriously, I have a bovine valve and i will need to do this again sometime down the road. And although it isnt a pleasant thought, I know I can do it. You can do it too, like I said visualize yourself on the other side of this whole ordeal. Make plans to do something post surgery for when you are feeling better. REalize that this is a moment in time for you, not the end but the beginning.
Michelle ~ You are one of the strongest women I know and you always have been since you were a tiny girl. I remember you squatting down to rest whenever you got tired and it seemed like Meme & Dodie and all of us cousin's were counting the days til you were 7 yr's old(?) so doctor's could repair the hole in your heart. You come from a family of tough, fightin' women... look at your beloved Mama and your sweet sister. Going through this remarkable surgery with your wry sense of humor, your positive outlook on life and your faith in the Lord will carry you through in triumph! All your aunties and your cousins are metaphorically carrying you around with them right now. I love you, Kimmie
Michelle, Your post made me cry because I felt the same way a few months ago. I am 4 weeks post op and can tell you what you are feeling is completely normal. Of course you have to go through with the surgery and deep down you know that. All the "what ifs" you are having is exactly the reason why you will have the surgery. Theres too much too lose by not having it. You will be fine. Visualize yourself on the other side of this surgery. Have faith!
Cardiology has come a long way over the past couple of decades. They can do amazing things with the heart. These procedures are second nature to the doctors who are in this specialty. You will be in good hands and God's strong Hands will be right there with them, leading the way!!
Hi Michelle, I had my surgery last Sept for aortic stenosis and anneursym of ascending aorta. My doctor said I would probably have about 3 years to live. I have so much in life to look forward to. Yes it is major surgery but it is so dooable. I feel lucky that I got this problem compared to cancer or some other nasty thing. My life now is so wonderful and I feel so blessed and I know you will to. It is also very normal to have all of these feelings but I just prayed a lot and it really did work. Right before I had surgery I felt Gods arms wrapped around me saying it will be ok. And my daughter when she was 29 years old had aortic stenosis and now is ok with 3 very active kids. Please read my journal. I just put a new one in tonight that I received from my stress management class at rehab. It might help you. Good luck and I will keep you in my prayers also.
Linda H and Elsie AVR 9/19/12
Michelle, you are one of the many heroes I look to everyday for hope. I know I will be facing this decision one day too. The same thoughts that you have expressed are what go thru my mind as well, but I know the odds are on our side and the inspiring words of everyone that has gone thru this ordeal before us are truly refreshing. Keep the faith and one day you will be giving me the encouraging words that I will so need to hear. You are in my thoughts and prayers always. Leticia
You have many more years. Although it is scary you will feel so much better after.. No one would choose to have this condition but happily they can fix it. My son had his aortic valve repaired at age 24 which was 2 years ago. Please have the surgery.
Michelle, every word you write lets me walk beside you on this journey. Thank you so much for sharing this.
Blessings, baby girl. I look forward to rekindling our cousin-ness even more as you recover!
A date! You are one giant step away from feeling well again. I am so happy for you and your family. I can't even imagine how scared you are. I am glad you took your time sorting this all out. The Good Lord is holding you carefully and safely in His hands--leave it to Him. He is the one really in control. Stay rested. Be happy. You are going to be fine. Love ya! Marcy
I am so glad you have a date. I have not experienced heart valve surgery as a patient, but as a daughter. My mom had her aortic valve replaced a few years ago. As a daughter, I am so grateful for the time it has given me and my kids to spend with her. Think of all the things your kids have to look forward to sharing with you. I know how much they love you. You are a great mom to give them this gift.
I finally figured out how to see your journal. My computer will not let me open it up, so I have to try my iPhone. Anyway, I have 2 friends who have had that MAZE procedure done. I know they explained it to me at the time, but that was years ago. They are both with us today, so it helped them. I'm sure technology has improved over the past 15 years.
You need a relaxing trip to Leakey with me when Ella goes to day care next month!! I'll be in touch. It's 4:30 am right now and guess who's on my mind, little buddie!!!
O.k., so now the date is set. The sooner it gets here, the sooner this ordeal will be dealt with and you will be on your way to feeling good again. That's a good thing to look forward to. I am due to see my Doc again mid-April. Hoping I won't need to do the valve replacement yet. But I am so glad to have been able to read your journal and been exposed to all the good info you have generated for me. Keep your chin up, Sweet girl, Love you. Aunt Mel
Good Evening Michelle,
I am glad you have found the surgeon for you. What hospital will you be at for surgery? Take care of yourself and get stronger for the surgery. I will pray for a complete recovery.
If we could we would give you a big hug as getting these types of news is so very difficult. Steve's valves were also very damaged as I had shared with you and in addition he had a concrete layer of calcium deposits that prevented a repair. It was shocking and surreal to hear all of this. We also were told that they couldn't guarantee that Steve would feel better (I think they just have to say that), but if it is any comfort Steve has not been lightheaded in the mornings as he was for a while and slowly his coloring in his face is coming back (he was waking up pale every morning). I want to say that the wheezing is also started to fade if not already gone. I am encouraged to see him come back to life a little every day. The surgery truly saved his life and the rest we're leaving in God's hands to restore as we are assured that God can do the same for you. As for the mechanical valve and coumadin, it really is a small price to pay if he can be with us and hopefully avoid re-operation in about 10 years due to his age. We will continue to pray for you as we empathize with all your feelings. Feel free to email me at any time.
Michelle, I think you are a very brave lady
this can not be easy but I know you will
walk through this all, maybe a little slow at first, but as soon as you are done with the surgery, it will be behind you and off to the races you will be.
We are praying for you.
Psalm 91 and Is. 54:17
this is John Madonna
by the way my valve is mechanical....the warfarin is no big deal...you learn to live with it and the blood tests are not that bad....and believe me I used to fear them now I can be in and out in 30 seconds...Mechanical is the way to go...although you hear ticking and you know you are alive..
I had my surgery to replace my Aorta nd root repair at 48 years old.. You are not the only one with complex issues.
Normal valve surgery is about 4 hours MINE was over 8 hours...normal ICU stay is 36 hours mine was 9 days.
YOU ARE NOT ALONE
my surgery was 8/9/11...and I am still here to tell about it.
Put yourself in God's hands..PRAY HOPE AND DONT WORRY and you will be alright.
Keep me posted
LAS VEGAS NV
They cut some of my existing chords and stitched in at least a dozen or two Gor-Tex chords as part of the repair. Although I had my surgery at Cleveland Clinic, Dr. Ryan had also explained that he would have used the same types of chords and annuloplasty as CCF. Not sure if my situation with chordal length was the same as yours though.
From what I recall reading, the success rate over time for repairs is typically better than replacements, so it sounded a little out of the ordinary to hear that a surgeon might be concerned about a redo so soon. But maybe there is something unique about what he sees.
By the way, if you haven't found it already, you may want to look at valvereplacement.org. That is another great site for information.
If there is anything you want to ask outside the HVJ site, please don't hesitate to email me at email@example.com. I remember exactly how I was feeling at the early stage in the process....mostly a lot of late nights reading everything I could find in mitral valve surgery.
Well, today was not a good day to ask you for your journal. I am sorry about the findings of your cath procedure. I have no idea what to say except that when I read your notes, I am so reminded of your Mom. You are as brave as she was, humorous even when things aren't great, and such an inspiration to all. I know she is with you on this journey and will help you through it. Thank you for keeping us informed.
God Bless you, AP
I had bi-leaflet (i.e Barlowe's) prolapse and had it repaired using minimally invasive surgery through an incision between my right ribs with no problems. I spoke with 3 other top surgeons and they all planned to do a repair using the same method and avoid a replacement. I am 36 and the surgeon thinks I may never need another surgery. Is there something specific about your bi-leaflet prolapse that is different from others? Has your surgeon done several hundred of these types of repairs? Just a couple of questions to consider.
If you could handle the travel and there aren't major insurance hurdles to jump through, would recommend Dr. Ryan out of Dallas. He is known as the superstar valve surgeon in North Texas.
Contact me if you have any questions and feel free to read my journal here. All the best of luck and hope you hear some positive news soon.
Michelle, i just read your last journal entry. I know some day in the near future I too will be receiving this type of news. I just want to give you support and raise your hopes. Your not alone and remember the success rates for these surgerys is excellent. I know it rattles nerves and I'm scared too, but stats are on our side. Faith and prayers, Leticia.
Sounds like you had a rough day. More questions than answers. To learn more about our faulty valves and the impact on our lives read the journal entries from Dave Van Buren. His writings will fill in a lot of the blanks. I will keep you in my prayers.
Bicuspid AVR 04/02/12
Thinking of you, sweet girl. You are at the top of my prayer list, especially if I wake in the middle of the night and use that time for prayers. So if you awake and can't go back to sleep, please know that prayers are swirling!
Wishing you the best of news from your visit with the surgeon tommorrow. Hopefully all will work out and he can schedule the surgery soon, so you can start feeling better. Stay strong and know you will be remain in my thoughts and prayers throughout this process. Miss you, Jess Worthey
Hope you are resting today after your procedure yesterday. You are getting closer to a decision on a surgery date and that is a good thing. You remain in my prayers. Dad and I send our love to you and Karl. Janey
I am so sorry to hear about your problem. I, like Puddin, remember how sick you were before your heart surgery all of those years ago and how the surgery changed your life. You have been through so much in your young life, but you have always bounced back and become a strong and courageous person that I admire so much. My thoughts and prayers are with you for a speedy recovery and quick return to your active life! Love, Aunt Mary
Glad to hear you received your cath results. I know this is a hard time but be assured that we will all be with you in thought and prayer. I hope that your surgery gets scheduled soon so that you can start feeling better too. I might miss a few postings because I leave to Los Angeles tomorrow for my pre-admission but we will keep our eye on your updates. We will pray for you Michelle.
Oh Michelle, I cannot believe you are going through this again! I remember when you had surgery as a child. It took your tiredness and other issues away and made you healthy,and you have become such a beautiful, smart and compassionate woman. You have that Dolle/ Ulbright gumption that will carry you through this. So instead of shaking my fist at God for you having to deal with this deja vu all over again, I will humble myself before Him and pray for a quick and easy and less painful resolution to all of this. Blessings to you, precious baby girl, and continuous prayers. Love, Puddin'
Good morning Michelle
You have been in my prayers everyday and I will continue to lift you up to the Lord and ask him to be by your side during the surgery and during your recovery. If there is anything dad or I can do for you and Karl, please let us know. We will be with Karl during the surgery. love you, Janey
Hope your visits with the surgeons go well. We sent you a brief list of questions we asked..by reading your journal it will be crucial to ask what types of surgeries they specialize in: repair or replacement. You will want to have a surgeon that has a very high repair rate and that understands your specific medical history. Our best to you Michelle. We know it is scary but without it we cannot get better. We're in this together.
We have been friends now for over 17 years. You are such a strong person, I have no doubt that you will come through this with flying colors. You have to.....you have too much on the horizon. You are in my thoughts and prayers. You are blessed to have a strong family and friend support system as well. I'm here! Love you, Tracy
Welcome to HVJ. This website helped me tremendously when I learned of my valve repair need. I ended up traveling to a heart center to have my aortic valve repaired when I was told it needed to be replaced. It was well worth the travel and expense to go somewhere they did valve surgery on a regular basis. I live in the chicago area and my local surgeons were not willing to do anything but a standard replacement of the valve using a full sternotomy. Cleveland Clinic was able to repair my valve with a mini sterotomy. So, in my opinion, it may be worth expanding your search area if you have the resources to do so. At Cleveland Clinic, I would recommend a surgeon by the name of Gillnov who I believe does repairs on a regular basis of the mitral valve.