Jayne's Journal

Ben Hyman  That's very unusual to have a repair fail so quickly. I've read that 95% of all MV repairs show no leakage after 10 years. I'm wondering if you had Rhumatic Fever as Rhumatic valves have a higher tendency to fail and they are normally replaced.

I will eventually be going for a Mitral Repair at Abbott Northwestern Hospital here in Minneapolis. In fact, their Minneapolis Heart a Institute does slot of repairs. They just did the first mechanical Mitral Valve through a catheter on a 76 year old man from Cumberland WI. I also asked about the Mitra Clip as they do a lot of them. Unfortunately they don't use them on younger patients. They are not as durable as traditional repairs or replaced valves and are normally reserved for those too old or frail to handle the rigors of traditional valve surgery. They also don't work well on larger jets as they are smaller than valves .

You may want to go to a center that does a lot of valves as even a "redo" like yours can be repaired if the surgeon has the right skills. The best in the world is at Cleveland Clinic. Dr David Adams at Mount Sinai in NY is also highly regarded. Dr Robert Farivar at Abbott is also highly skilled.

Hope this helps

Ben from Minneapolis

Barry Van Gemert  I don't think that the Abbott clip is approved for use in the U.S. yet, but you could probably register to participate in a trial. That being said, it sounds like something went horribly wrong with your procedure.

Ben Hyman  Barry, you are correct. The procedure done on the Cumberland man is brand new and the valve used is made by a local company. The MitraClip is entirely different and not designed for otherwise healthy patients.

Tammy Pilcher  Jayne, I'm so sorry you're having this problem again. Praying that the doctors will figure out the best thing to do. Best wishes!

Wiliam Height  So sorry to hear this news. The most important thing you can do now is go to a heart centers/featured surgeons, many of which are listed to the right. I say this because if you are being told you are a candidate by a doctor for the Mitral Clip, run. It is for older, weaker heart patients only.

Nancy D  while the odds are that a repair is the way to go if possible, the 5% that don't do the job is significant if you fall in that category for sure. We look to the experts to make recommendations, and hope odds are in our favor. But just like anything, repairs can fail, tissue valves can too, and mechanical are almost never bad, but......things can and do happen.
Jayne, I am so sorry your repair wasn't what it was supposed to be, but I do hope you get something done that fixes it for good. Not knowing much about the clips, why did your doc suggest this and not a replacement? Is it because that is less invasive to go through? Praying you get your answers and the information, care and treatment necessary!!! Take good care and keep us informed as you can!

Michael Meyer  Having a positive outlook and anticipation is important going into surgery. I tried to relax with my family, enjoy the creation around me and practice the meditation and imagery techniques prior to surgery.

Nancy D  Wishing you a complete and rapid recovery. Be patient with yourself, celebrate the baby steps of progress as those come more frequently than big ones in my experience, get enough healing rest and walk! I started with strolls around the house, taking the long way to the bathroom, then moved to the driveway and did laps, then the street, then the block! Lots of baby steps there to celebrate! Soon you will be journaling your post of course encouraging others who are anticipating!
Know you are in good hands, and all of us are cheering you on!

Joan Napier  Jayne, Praying for you this week as your surgery date approaches. May God keep you close and give you peace. Joan

  sending you all my best thoughts and prayers! may you, your family and your whole medical team be guided, protected and blessed ! ~

Debbie cross  Yes, I thought everyone had these.Pace wires were connected to the box that fits in a pocket of the hospital gown.These wires were not taken out until discharge f me.(I am 3 weeks post op)Do you think this is what he was talking about?

Daryl McCallum  Just making sure you don't go into Afib...I had it too but when they took the wires out I went into Afib for a couple of minutes...it was fine

Eleanor R  Yes, I imagine we all had "pacer wires" which attach to a small battery pack which fits into your hospital gown pocket. They don't "insert" the pacemaker into your body, just the wires, and they are the last things to come out when you are being released. Many wires, tubes and machines, all serving you while you're there, and then suddenly you are disconnected, and free again. A quick process actually when you think of the enormity of the science. I wish you the very best. Eleanor

Joan Napier  Jayne, my surgeon said all heart valve surgery patients routinely have temporary pacing wires for 2-3 days post op, so I will have them too. From what I am told, it helps prevent various arrhythmias and ensures adequate heart rate and cardiac output. Whatever it takes, right?

Jayne Martinko  Thank you for all of the responses, I was really worried about this...now it falls into the "i can handle that" category!

Joseph Ballett  Yes the wires are not a big deal , the only thing i found was the extra weight around my neck as it would pull my gown down when walking

Melinda Hacker  I had the little machine in the pocket of my hospital gown too. It is hooked to me with EKG stickers. They told me that this keeps my heart monitored during my entire stay at the hospital. I had nice PJs that I had planned to wear in the hospital but this machine kept me in the dreadful hospital gown. It was a portable EKG.

  thank you for sharing your story Jayne, it is so helpful. I am likely facing a second surgery in the near future, also trouble with sleeping and "carrying on" when so much is going on inside. Blessings and all my best thoughts to you and everyone here, we can do this, one step at a time

Nancy D  The time between diagnosis and surgery day were very difficult for me as well, the testing, the decisions, everything. At least after the fact you have only to work on getting well, walking and forward momentum. It is so consuming...you are not alone and you will get there I promise. Stay busy, prepare as well as you can-- I put up a few meals in the freezer so my dear husband could take the night off of cooking some times and that was great for us. Kept me busy as well prior to. Decisions, preparing, recovery are all so individual, but we are all here striving to get better and get on with our new normal. Soon you too will be in the recovery phase and doing wonderfully well. There is no right or wrong way to feel. It just is what it is......and this is a great site to help you through......Keep your onward and upward ready and polished- and you too will be astounded when you are like me and nearing 8 weeks post op! Take care, rest when you can, it is a wonderful healer!!

Linda Crawford  Hi Jayne, I have RA and will be having my aortic valve replaced in January. One of my first concerns was how that might effect my RA. My RA doctor said not to worry and that he had had other patients who had had open heart surgery with no problems. I was worried about being off my RA meds. He said that I won't have to stop them and my cardiologist agreed. :). I was also worried about being inactive for so long because If I don't keep moving I stiffen right up. After reading other journals on this site, I see that I will probably be moving fairly soon after surgery :)

Jayne Martinko  Thank you Linda. Very helpful. I am more concerned with future surgeries with the blood thinners. Pretty sure my hips may be an issue in the future. Want to make sure I truly understand benefits/risk of my replacement choices. Still praying for repair!

Linda Crawford  I have been on a blood thinner for years -- had one major surgery and several fairly minor ones with no problems. They have you stop the blood thinner a few days before to let your levels drop down a bit. I have to take it because of my RA which causes surprise blood clots if left unchecked. The blood thinner is really the least of my concerns going into this valve replacement. It sounds scary but is really not as bad as it sounds. I will have to have knee replacements some day and I asked about how that worked after having heart valve surgery -- they said not to worry, they can still do it.

Eleanor R  Hi, Jayne. Me, too - I thought I was doing great, just an annual check up and a young PA saying "do you know you have a heart murmur?". So it began, with surgery in July and now almost three months later, back at the sweet spot in life where I thought I was before. Cardiac rehab, driving again for over a month, can do so much more than before, even though I thought I had no symptoms. Actually, I did, just didn't recognize them as such, discounting them with other rationale - aging, need to get back in the gym, etc. Only thing I notice is that while I don't take naps, I am really ready for bed most nights, which I guess is a plus, except I was a night owl before. So I go to bed earlier, and read in bed a while, probably a healthier side effect. You should do just fine as you are probably fairly healthy otherwise and in good shape chasing around after teens and their needs. You will have good caretakers once you're home! Best wishes to you. Eleanor

Liidia Wootten  Hi Jayne. it is a good thing your valve was diagnosed so you can take care of it. I"m 12 weeks post-op and finally starting to feel more normal - whatever that is. This is a great site full of information and empathy. And, a fantastic support community. Positive thoughts

Jayne Martinko  Thank you ladies, I am feeling pretty positive about the whole thing. Received A dam's book yesterday. Sat in my new recliner and started to educate myself on the process. Still sore from the cardiac catheterization. But heading back to work today. Thanks for being out there.