Phew! I got cleared from rheumatology to get my surgery next week. All my autoimmune tests came back negative! I still don't have a definitive diagnosis or explanation for the cause of the skin issue I had on my hands, which is frustrating, but it is mostly cleared up now. I am just grateful not to have one of these awful autoimmune diseases they were testing me for. Onward and upward!
Bob Fessler Mike made it thru surgery with Dr. Barnhart so I'm sure you and I will. Glad to hear your autoimmune ... Read more
Bob Fessler Mike made it thru surgery with Dr. Barnhart so I'm sure you and I will. Glad to hear your autoimmune tests came back negative. Relax and think good thoughts.
Pre-op testing today
Journal posted on March 21, 2016
Been a long day of testing. Grateful my hubby was by my side cause these are the kinds of things that frazzle me. But all went smoothly and the employees were lovely. This is all starting to feel real now and today I'm strangely excited to get this surgery over with. Just under 3 weeks til it happens, barring any autoimmune disorders show up on my bloodwork. The last hurdle is meeting with the rheumatologist on the 29th to find that out. For now just moving ahead as planned and making all the preparations I can.
Barbara Laurie Kate It's harder when we have other healh issues that may hinder our progress, praying now all will g ... Read more
Barbara Laurie Kate It's harder when we have other healh issues that may hinder our progress, praying now all will go well for you. I couldn't do it without Dave with me, truly, At All!! Best Regards, โค๏ธ Barbara
Kate Watson Thanks Barbara. Sending lots of good thoughts and prayers your way too!
Thinking of you, Kate! Hope all goes smoothly.
Wanda Mroz Best of luck Kate... Good vibes coming your way...๐
Emily Rowley You would be exhausted, rest up Heart Sister โค๐ค๐ซ Hoping results come okay.
Kim Murray Hello, I wanted to thank you for your comments to my journal, I read your story and we really are ver ... Read more
Kim Murray Hello, I wanted to thank you for your comments to my journal, I read your story and we really are very similar in our valvular disease issues. I was diagnosised much later than you, but who knows, my cardiologist said it must have been going on for quite some time, I prop ably would still not know if I wouldn't have went into congestive heart failure while getting tonsillectomy over the summer. I had some symptoms but I really didn't give them much attention. Anyways I'm glad you're getting exciting about your surgery. I'm hoping to put my off until the summer. I'm driving from Cincinnati up to clevland clinic on april7th, so I guess he will evaluate my records and decide if it's feasible to wait.. My oldest daughter is graduating from highschool and I reallly want to through her a great party and be able to participate in all her last senior activities ๐ Good luck with everything , I hope to hear from you again .
Erin Hannum Hi Kate, I, too, had a few weeks to wait before surgery and I filled it with organizing cupboards, co ... Read more
Erin Hannum Hi Kate, I, too, had a few weeks to wait before surgery and I filled it with organizing cupboards, cooking and freezing meals, stocking the cupboards - you would think I was never coming back! I did have an anxiety attack for the first time though which I will never forget. It was all part of the process. I hope you are not afraid of Warfarin and what that entails. I have accepted that this is part of my life and I have not been able to get my level stable in six weeks! I think that's because my life is not as stable now as it will be when I'm fully healed and working, etc. I'm not going to think too much about this, I will pay attention and do my very best, but not freak out. Remember that there are many people out there that have to deal with this same nuisance. I will keep you in my thoughts and prayers.
A challenging week with other health issues!
Journal posted on March 17, 2016
I had this painful condition erupt on my skin about 5 weeks ago. I saw 2 doctors, and a dermatologist who didn't know what it was but were sufficiently concerned. The dermatologist did a biopsy on it which came back abnormal, indicating that I May have some type of autoimmune disorder. But they said it could also be related to poor circulation with my heart. I was then sent to a rheumatologist who did about 8 vials worth of blood tests yesterday. The dermatologist and rheumatologist are both concerned that if I have a new auto immune disorder that I may need treatment, which would likely delay my surgery. I tell you that I do not need any more health issues- I am already dealing with IBS, fibromyalgia, and chronic/acute migraines on top of my heart stuff and trying to keep them under control as best I can. Surgery is scheduled for April 8th and I have family flying from 3 states to help with various part of my recovery process, so a delay in surgery would not be great. Also would not be good for my emotional status because I am about ready to get this surgery over with at this point and get on with my recovery! The last few months have been just rough with stress and terrible timing on many things. It's almost laughable and sometimes I do just have to laugh about all of it because the alternative is to go insane and become depressed! I do have my bad emotional days but overall I think I'm managing ok. I'm doing meditations, yoga, visualizing, affirmations, still walking up to a mile a day with my dog, taking xanax as needed at night, and leaning on my supports which is all helping greatly. I'm also learning to let go a little, understanding that I don't have as much control over my health as I'd like to believe. That's not really a bad thing, I'm not giving up fighting or anything, it's just causing me to loosen my grip, and acknowledge that what will be will be.
Joyce Shelby Kate, I am so sorry about your health challenges. I will be praying for you and your family. It sou ... Read more
Joyce Shelby Kate, I am so sorry about your health challenges. I will be praying for you and your family. It sounds like you are doing everything in your power to keep your head up. Sometimes things are out of our control and it doesn't feel pleasant, but we must persevere and it sounds like you definitely have been! You are an inspiration to many and you probably don't realize it! :-) I wish you complete health and healing. I hope everything works out for you! God Bless!
Alina FH Hang in there, Kate! You're doing all the right things. Just stay focused on you and imagine all the ... Read more
Alina FH Hang in there, Kate! You're doing all the right things. Just stay focused on you and imagine all the possibilities when all this is behind you. Thinking of you and sending good vibes.
Wanda Mroz Best wishes and prayers being sent... Hang on.... It'll be ok. Although it is hard sometimes.... Keep ... Read more
Wanda Mroz Best wishes and prayers being sent... Hang on.... It'll be ok. Although it is hard sometimes.... Keep positive. Hugs๐
Gail Magnus Hi Kate. Sorry to hear you're having to deal with more stuff...yuck! I firmly believe that things ha ... Read more
Gail Magnus Hi Kate. Sorry to hear you're having to deal with more stuff...yuck! I firmly believe that things happen for a reason, though... maybe it doesn't make sense now, but it will hopefully. Hang in there and let's talk soon!
Hang in there, Kate. How stressful. Thinking of you and hoping all gets cleared up and you can have y ... Read more
Hang in there, Kate. How stressful. Thinking of you and hoping all gets cleared up and you can have your surgery when your body is ready.
Kate Watson Thank you guys so much. You are right Joyce, I can't imagine myself being an inspiration but thank y ... Read more
Kate Watson Thank you guys so much. You are right Joyce, I can't imagine myself being an inspiration but thank you for saying so! :) Well, I am just taking it day by day at this point, being cautiously optimistic that nothing else presents itself. Obviously if something else is wrong though, I'd like to know about now before they do this major surgery. Not much else I can do about it but wait. Waiting is hard stuff and I'm not the most patient person. Thank you all for being here to help me through this though!
Coping with my declining health in the midst of moving
Journal posted on March 2, 2016
I really over did it physically the last week. We are in the middle of moving, and the timing couldn't be much worse with my health. We had this whole plan, where we are selling our house and moving into a temporary apartment. After the house sells, we are going to start looking to buy another house in our new location. My husband got a new job a few months ago and it required us to relocate because his commute was brutal. But I don't know that we would have planned to move right now if we had known I was going to end up needing my surgery next month! We weren't anticipating living in a tiny apartment during my surgery- it's going to be quite cramped here when we have family come stay with us for that.
There is so much to get done in this moving process and I ended up pushing myself so hard- I had a few woozy, dizzy spells that were scary. I'm so used to being active and independent and it's hard for me to accept that I am getting worse physically and need to slow down. It is so hard for me to ask other people for help due to my stubborn independence but it is a lesson I am learning. I have been finding that people actually want to help, especially if you tell them exactly what you need. I have to listen to my body and remember that everything that needs to get done will get done in due time. We'll just be living out of boxes for longer than I'd like, but it is not worth pushing myself and landing in the hospital!
Angela Hicks Kate I am in cardiac rehab and there was a class today on stress management. I am independent and ha ... Read more
Angela Hicks Kate I am in cardiac rehab and there was a class today on stress management. I am independent and have always been the caregiver. What I have learned is that it's okay to need help and to slow down. Listen to your body and relax and reflect on how great it is you have family/friends to help.
Alina FH Kate, I read your words and it sounds like we're soul sisters - I am also very independent, and my hu ... Read more
Alina FH Kate, I read your words and it sounds like we're soul sisters - I am also very independent, and my husband will even tell you - he married me because I didn't need anything, because I was self sufficient and never complained about or asked for anything - I just fixed it/ got it my own self. Well ... I am learning, too, to slow down and ask for help. It's really like having a lobotomy and being conscious about it. He even has to put on my socks in the morning, I can't bend over that low ... But I start telling myself before anything I do "heart first" - so, if it puts strain on my body, or my breathing, or steals unnecessary energy from me, I ask first. I keep all the energy I got for my rehab, which I know helps my heart get stronger. Cooking and cleaning and taking stuff out of the dryer can either wait or have people around me assist with.
Think of your heart first. It will take you far once it's healthy. Many good vibes your way.
Jean Raber Moving on a wonky heart, I just can't imagine. It makes me want to sit down just reading about it. I' ... Read more
Jean Raber Moving on a wonky heart, I just can't imagine. It makes me want to sit down just reading about it. I'm glad you have people around willing to help. I have always been the bread-winner and doer in our family, and I have had to sit family down and explain in blunt terms what I will do and what they will have to do for themselves. So far, they've done pretty well. But I have had to lower my standards about clutter considerably. I'm still doing the cooking or we'd be having dinner-in-a-can every night.
Kate Watson I know, Jean, we are nuts, timing was terrible for this! Alana, I like that advice "heart first." T ... Read more
Kate Watson I know, Jean, we are nuts, timing was terrible for this! Alana, I like that advice "heart first." Thank you for sharing that, I will use it :) Thanks Angela, it's a lesson I'm learning that it's ok to slow down. My mind is way more active than my body is able to right now and it's hard for me to accept that. But it's forcing me to focus on what's important in life, which is a good thing. I'm trying to look forward more to life after surgery when I'm fully recovered and have a lot more energy than I have in a long time.
Update posted on...
February 23, 2016
Has anyone here had a double valve replacement? I am scheduled to get both my mitral and aortic valves replaced with mechanical valves in April. I am very worried about the fact that my risks are higher because it's two valves now and my second OHS, (even though my risks are still relatively low given my age and otherwise good health). I'm still pretty freaked and sad because I hoped and believed over these years since I got my bovine valve that I would be a candidate for a minimally invasive procedure when the time came again and that my mitral valve could be repaired instead of replaced, but alas it is not the case. So I am working on acceptance and gratitude and visualizing life after surgery, and after recovery when I have a fully functioning heart again.
Sending warm thoughts of peace to you, Kate. Best wishes on your upcoming surgery. Mindfulness is a w ... Read more
Sending warm thoughts of peace to you, Kate. Best wishes on your upcoming surgery. Mindfulness is a wonderful tool. Best wishes!!
Cathy Slipski Thinking of you! Like you told me when I was gping for surgery....you got this Kate!
Gail Magnus I had a double valve replacement for my first OHS when I was 30 (16 years ago). I had the Ross Proce ... Read more
Gail Magnus I had a double valve replacement for my first OHS when I was 30 (16 years ago). I had the Ross Procedure , like Adam Pick! I read "your story" and our first experiences sound a lot alike! I just had my 2nd OHS on 2/1/16 and to date, I'm doing better than my first time. I had my AVR w/a bovine valve and my aortic anyeursm fixed. Not the exact same as you, but I had very similar worries and I'm doing well.
Sheila Harrison Hi Kate I had both my mitral and aortic valves replaced 9-9-15, bovine values. I am in cardiac rehab ... Read more
Sheila Harrison Hi Kate I had both my mitral and aortic valves replaced 9-9-15, bovine values. I am in cardiac rehab and have returned to work. I am 56 years old. I feel so much better than I did prior to surgery but have a lot of work to do. I have weight to loose and am committed to a healthier life style.
Wanda Mroz Best of luck to you. Everything will be fine and you will feel much better. Hugs
Kate Watson It's easy to feel so alone and scared with this. Thank you all so much, it really helps to have all o ... Read more
Kate Watson It's easy to feel so alone and scared with this. Thank you all so much, it really helps to have all of you here!
Alina FH Kate, I did not have two valves replaced at once, but I had a LOT of work done at one time - there we ... Read more
Alina FH Kate, I did not have two valves replaced at once, but I had a LOT of work done at one time - there were 3 surgeons in my surgery, and 3 PAs and they were all shocked at the amount of work my (main) surgeon did in one surgery: they replaced the aortic valve, they replaced the ascending aorta and the root with a Dacron graft, they put me in circulatory arrest (which is where they freeze your brain almost and they use your venous system to feed oxygen blood to your brain for about 30 minutes, so they can work on your aorta - very risky procedure because of potential for massive strokes) and they cleaned out my aortic arch, which, in their words, " was like a solid piece of PVC rather than like a flexible, fibrous hose". THEN, they did a quadruple by-pass on four major coronary arteries in my heart. I am 40, and I was in the ICU an extra day only(2 total), and out of the hospital in a week and a day. I have been in rehab for a week tomorrow - so, started rehab about 2 weeks since surgery.
Kate Watson Yikes, Alina, I didn't realize how extensive your surgery was! It is amazing how resilient the human ... Read more
Kate Watson Yikes, Alina, I didn't realize how extensive your surgery was! It is amazing how resilient the human body is and I need to remind myself of that often. It's inspiring to see how well you are progressing!
Alina FH Aw, thanks, Kate! One day at a time, and some days are better than others. But, YES, you are right - ... Read more
Alina FH Aw, thanks, Kate! One day at a time, and some days are better than others. But, YES, you are right - our bodies are amazing machines. :)
I found "The One"- my cardiac surgeon
Journal posted on February 19, 2016
It's like when I met my husband- I knew right away and that's how I felt after meeting Dr Barnhart at Swedish yesterday. I've talked with 3 surgeons now but he is the one I feel most confident in. At the same time, I am still reeling and trying to adjust to the news he gave me. He does not believe that my mitral valve can be repaired and that I will indeed need a double valve replacement and soon. It is now scheduled for April 8th. I guess I didn't understand from my cardiologist how bad both valves were, she had emphasized the worsening mitral stenosis after my last echo. Dr Barnhart thoroughly went over my echo and showed us how stiff and thickened my mitral valve is, it's barely opening. And my aortic valve is severely stenotic and also has mild regurgitation. Well, it explains why I feel as bad as I do. I thought a lot of my symptoms were in my head from anxiety. I was holding out hope until recently that I'd be a candidate for minimally invasive surgery, that they could fix my mitral valve without having to replace it, but that is not the case. So I am trying to move into acceptance around this. I wish the timing weren't so terrible- life is just chaotic right now! I guess there is never a good time for this though.
Daryl McCallum Kate you picked a good team there. I too had Dr. Barnhart and as far as I'm concerned he is the best ... Read more
Daryl McCallum Kate you picked a good team there. I too had Dr. Barnhart and as far as I'm concerned he is the best. My wife and I interviewed three different surgeons and he was the last. We felt so comfortable it was like OK when do we start. If it wasn't him visiting after the surgery it was one of his team. If you'd like to talk sometime, my wife could explain the whole thing to you. Be brave kiddo your in the hands of a good surgical team
Gail Magnus Hooray...you found the one! Congrats! :-)
Congrats on finding the right surgeon! Sending warm thoughts of acceptance as you move towards surger ... Read more
Congrats on finding the right surgeon! Sending warm thoughts of acceptance as you move towards surgery. Best wishes!
Robert Osmachenko Your intuition serves you well. I'm glad you feel comfortable with Dr Barnhart and I'm sure his team ... Read more
Robert Osmachenko Your intuition serves you well. I'm glad you feel comfortable with Dr Barnhart and I'm sure his team lines up with his high standards. Also glad you will be a doing a replacement vs. repair. Prayers aloft for you on a successful surgery!
Bob Fessler I'm glad to hear you liked Dr Barnhart as he's the surgeon I'm thinking of going with when the time c ... Read more
Bob Fessler I'm glad to hear you liked Dr Barnhart as he's the surgeon I'm thinking of going with when the time comes. I've only heard good things about him.
Lynee Casper Good to hear you have some of the big considerations covered, your Doc sounds great. Best to you as y ... Read more
Lynee Casper Good to hear you have some of the big considerations covered, your Doc sounds great. Best to you as you approach planning and preparations.
Sophia Ridley Faith in your surgeon is paramount, glad to hear that you've found the one.
Alina FH Good luck, Kate. It felt the exact same for me. It's going to make all the difference!
Kate Watson That's great to hear Daryl! I am still scared to death about this. He said my recovery will be long ... Read more
Kate Watson That's great to hear Daryl! I am still scared to death about this. He said my recovery will be longer than my first operation, which is very very hard to imagine cause I had a rough go the first time. I'm so glad for this group, to see so many people on the other side of this surgery and moving along in their recovery.
Do you find yourselves preoccupied with death or thinking about it/fearing it more than you did before you got diagnosed? I know I felt this way before my first surgery too. Because I've had surgery before, I feel like I should be confident that I'll be ok because I survived it before and will survive again but I can't seem to stay in that frame of mind. I cry at some point every day. I feel myself worrying about my symptoms and not sure which are real vs in my head provoked by anxiety. Sometimes this idea about a tragic ending to my life pops into my head and I feel such sadness for the family and friends I would leave behind. Sometimes I am just sad and angry that I have to go through this again and sad that my husband has to watch me go through it. Other days I have so much gratitude that I have a treatable condition and simply that I am alive. I'm all over the place emotionally. I am seeing another surgeon at the end of next week and I am filled with both relief and dread about it! I wish I could be all Zen about this all the time, but I can't seem to stay there.
Emily Rowley Yes, my mind was constantly preoccupied with the same thoughts before my surgery. Going into my secon ... Read more
Emily Rowley Yes, my mind was constantly preoccupied with the same thoughts before my surgery. Going into my second Open-Heart Surgery it hit me more like a tonne of bricks. I would spend sleepless night thinking "Will this be my last year or day, I want to do this or that just in case I don't make it", even picturing my own funeral. The night before I was meant to have my Surgery I was an emotionally mess, especially after my Surgeon came in saying we need to postpone it til I have a huge team of Surgeon because there might be complications which would be hard to deal with, but if I don't have this Surgery I might not make it to the end of this year due to the severity of my heart condition. That freaked me out, I burst into tears all that night. The Pastoral Care Workers were a blessing, helping me find peace right before my Surgery and gave me a blessing. Now my thoughts are "Yay I'm alive, I can make it through another Open-Heart Surgery. Although no one told me it would be this hard". I have two shoulders, if you ever need one to cry on xx
Wanda Mroz I thought those thoughts before my shoulder surgery too. Not all the time,but now and then. I was i ... Read more
Wanda Mroz I thought those thoughts before my shoulder surgery too. Not all the time,but now and then. I was irritable and snappy. But I was trying to get everything in order so that took up some of my thought time, plus i had my job to take my thoughts. Sometimes I was in zen but not constant. I took 1/2 a Xanax at night to help me sleep. I think it's pretty normal to feel what you are feeling. Hugs...
Kate Watson I take xanax at night when I need it too, Wanda and it definitely helps. I'm meditating, doing yoga, ... Read more
Kate Watson I take xanax at night when I need it too, Wanda and it definitely helps. I'm meditating, doing yoga, visualizations, going to therapy, trying to stay busy, but still my mind goes there. Emily, I've been following your story, and I can see why you felt so scared. I'm so glad you got through it ok. Thank you guys for listening and understanding :)
Shannon Sullivan I too have these thoughts. I have had my diagnosis for a long time but my symptoms started to escala ... Read more
Shannon Sullivan I too have these thoughts. I have had my diagnosis for a long time but my symptoms started to escalate over the last year and this past December my cardiologist told me I now need surgery within a year. It all started to get real and I cant stop thinking about it. I go see a counsellor once every few weeks which does help, and it helps that i can talk about it. That being said, my coworkers and family don't really want to talk about it and i find that feeds my anxiety about the whole thing. I also don't have a definite date as well....which is very worrisome.
try seeing a counsellor
Casey Overcamp I can totally relate to the roller coaster. Consumed by thoughts of mortality and then grateful that ... Read more
Casey Overcamp I can totally relate to the roller coaster. Consumed by thoughts of mortality and then grateful that we live in a time where it's fixable. Hang in there.
Gary Stripling I remember the moment I was wheeled into the OR (after being delayed some 2 hours). Calming sedation ... Read more
Gary Stripling I remember the moment I was wheeled into the OR (after being delayed some 2 hours). Calming sedation had worn off by this point because I was the last surgery for the day, which was a good thing since mine took 6 hours. Anyway, after I was moved to the skinny stainless steel table 2 nurses were holding my hands, one on each side of me. They pressed into me close as the anesthesiologist began administering the sedation. I remember thinking "this is it. Either I wake up here and face recovery and a different life, or I wake up in heaven and it's all over." I was calmed by knowing my future was in the hands of these surgeons, nurses, techs, et.al., but still praying silently I would survive and wake up in recovery. And then I drifted off.
Contemplating serious life and death issues is something most people never go through. I've come to place a higher value on my life post-OHS and appreciate all I've been through. Still, when I lay in bed at night, knowing I'm 100% pacemaker dependent, I have to pray for calmness and peace, trusting that God will keep me alive as I sleep.
Sophia Ridley My faith has been strengthened through this experience and I've spent time pre and post op in church. ... Read more
Sophia Ridley My faith has been strengthened through this experience and I've spent time pre and post op in church. I had a blessing days before surgery which really calmed me. I didn't have many mortality thoughts beforehand probably as I was keeping as busy as I could but I have had afterwards, think that's more the enormity of the operation and my active imagination when I've had complications. I do feel utterly blessed that I had a treatable condition which such a high success rate and am thankfully for each day.
Meredith Bray Yes, the thoughts that brought the most tears were the ones about, "He's going to miss me so much" ev ... Read more
Meredith Bray Yes, the thoughts that brought the most tears were the ones about, "He's going to miss me so much" even two years later I still get blurry eyes. Those thoughts are normal for us, they're human emotions. It's OK!
Cheryl Bass Kate, I have surgery on March 8th and I think these thoughts to some degree go through most peoples m ... Read more
Cheryl Bass Kate, I have surgery on March 8th and I think these thoughts to some degree go through most peoples minds that are going to have OHS, I have been trying to keep busy, it's tax season so I have been getting my information ready to give to our CPA for taxes, working, I volunteer at a faith based low income clinic in our area (they say helping others takes our minds off of our problems, and it has helped for me) and spending time with grandchildren. I have had sleepless nights but prayer have helped and I think that as soon as I make a definite decision on whether or not to go the Ross Procedure or go with the tissue valve it will be even easier. I am praying for you to find the right surgeon and have peace about your surgery.
Kate Watson Thank you all for sharing your stories and insights on this. It really helps to know that I'm not al ... Read more
Kate Watson Thank you all for sharing your stories and insights on this. It really helps to know that I'm not alone in those thoughts. It's been such a delicate balance to allow myself to feel my feelings vs going too far into a negative state about it. There's a lot to be said for staying distracted and busy. It so happens that we are in the midst of trying to move because my husband got a new job and is commuting far, so I've been trying to fill my mind with looking at houses instead of obsessing about my health. I haven't cried in 2 days!
Lynee Casper Wow, I hear your thoughts in my reflections too. I also worry that I have not done enough, that I cou ... Read more
Lynee Casper Wow, I hear your thoughts in my reflections too. I also worry that I have not done enough, that I could have done more to be a better person, wife, step-mom and grandmother, Aunt, friend, you name it. Well, I am thankful that the success rate is good for my upcoming surgery, and I can be better, by recovering and working on being there, in the present for all those who matter to me! Kate you are strong, and thanks for sharing what we all feel during this process.
Christine Oliva Looks really good. I'm very grateful for surgery but will be glad when my scar is not as noticeable. ... Read more
Christine Oliva Looks really good. I'm very grateful for surgery but will be glad when my scar is not as noticeable. You really have to look to see yours. Thank you for posting and God Bless.
Frances Halley I'm inspired! I'm going to wear red tomorrow and show off my 6 week old scar!
Kate Watson Thank you! And yay Frances- yes, show off your badge of survival!
Emily Rowley Very beautiful โค My Pastoral Care Worker asked me "Your favourite colour is red, it is the source o ... Read more
Emily Rowley Very beautiful โค My Pastoral Care Worker asked me "Your favourite colour is red, it is the source of your life, yet why don't you wear red more often?".
Update posted on...
February 2, 2016
I heard from a surgeon in Chicago I've been waiting on getting a second opinion from and he believes I'm not a candidate for minimally invasive surgery, and that I will need a full sternotomy to address both valves at one time. I sought him out because he is very skilled in minimally invasive approaches, so I am very depressed to hear this. I am still seeing another surgeon in Seattle in just a few weeks for my third opinion. I have been holding out hope that I wouldn't have to go through full open heart again and I am having a lot of trouble accepting that I likely have to. I am especially scared because this would be my second surgery and because I'd need two valves operated on, which I know is a bit riskier. It doesn't seem as common that people have multiple diseased valves so it's harder to find information on it. I'd love to hear from you if any of you have been through multiple surgeries or have multiple valves issues.
Jan McClain Hi Kate, I'm Gail Magnus' husband's stepmother, Jan, and I'm with Gail right now in the hospital. She ... Read more
Jan McClain Hi Kate, I'm Gail Magnus' husband's stepmother, Jan, and I'm with Gail right now in the hospital. She wants to remind you that she too just had a second surgery to replace her aortic valve and had a graft/repair of an aortic aneurysm. Her prior surgery sixteen years ago was a Ross procedure involving her aortic and pulmonary valves. So she also has had two complicated open heart surgeries. Her operation yesterday was performed by Dr. Ed Verrier at University of Washington, who has had alot of experience with "redo" surgeries. The surgery was successful, and Gail is generally doing very well, apart from pain issues.
Jeff V. Kate, Did the Chicago surgeon explain how he would approach the MV problem? Does he think it is repa ... Read more
Jeff V. Kate, Did the Chicago surgeon explain how he would approach the MV problem? Does he think it is repairable? The full sternotomy is going to provide your surgeon with the best access and opportunity to fix your dual valve issue. I had a full sternotomy and based on what I've read on this site, the discomfort level for either procedure (mini vs full) - especially during the first couple of weeks - is similar. I would search for a surgeon who has done many MV repairs and a facility that specializes in more complicated open heart surgeries. Though Cleveland is far from home, I would keep it on your short list. Jeff
Ed Miskovic Dr McCarthy of Northwestern Memorial will do my surgery (AVR). Both him & the hospital are highly reg ... Read more
Ed Miskovic Dr McCarthy of Northwestern Memorial will do my surgery (AVR). Both him & the hospital are highly regarded. If it weren't for Northwestern being a couple hours away, I would have seriously checked out the Cleveland Clinic because of its reputation. Hope this helps.
Sophia Ridley My surgeon estimated 90% success keyhole and 99% open for my MV repair, so open it was. For them to h ... Read more
Sophia Ridley My surgeon estimated 90% success keyhole and 99% open for my MV repair, so open it was. For them to have access and to see and address addition issues (I had an undetected hole) is worth the additional recovery time.
I really feel for those having repeat surgery, it's unimaginable. I think I would opt for open to make sure it's done right as the structure of the heart will have altered following the first surgery.
Kate Watson Thanks for the message, Jan. So thoughtful of Gail to send this message along while she's in the mids ... Read more
Kate Watson Thanks for the message, Jan. So thoughtful of Gail to send this message along while she's in the midst of recovery! Send Gail my best wishes for recovery. I hope we'll get to meet in person one of these days when she's feeling good :)
Kate Watson Thank you all for the input. I see why I'm going to have to opt for open so they can access both val ... Read more
Kate Watson Thank you all for the input. I see why I'm going to have to opt for open so they can access both valves successfully, whether they repair or replace the mitral. I think I am just having trouble accepting that I need to get that done again, even though I knew this day would come. And I'm really scared about being on coumadin for life which was largely why I got a tissue valve the first time. Jeff, I will definitely keep Cleveland in mind if for some reason this next surgeon in Seattle isn't the right fit. Thank you!
Jeff V. Kate, I also have a dual valve problem. When it was time for surgery, I followed the lead of my Cle ... Read more
Jeff V. Kate, I also have a dual valve problem. When it was time for surgery, I followed the lead of my Cleveland Clinic Cardiologist who recommended two surgeons to repair my MV and replace the AV (if necessary)... Dr. Gosta Pettersson and Dr. Nicholas Smedira. For your reference, the doctor bios and videos can be seen on the Clinic website. I had a great result with Dr. Pettersson. Regarding your concern about Coumadin... you will see the range of opinions on this site. I do not need a thinner, but have a somewhat different perspective as I have had the opportunity to see my 20 year old daughter thrive while on a Coumadin for the last 12 years following a MV replacement at age 8. Granted, she is a kid but she has lived an incredibly active, normal and untethered life... she self monitors her INR monthly using "Alere" eqpt. and sees her cardio once a year. Other than that, her mechanical valve has performed flawlessly and I am very thankful for Coumadin. If my surgeon had decided that my AV needed replacement, I selected the On-X valve based on performance and reduced dosage rqts. (and the recommendation of my surgeon)! Jeff
Rita Savelis Last year I had 2 valves replaced (with mechanical valves) and a third valve repaired. My valve probl ... Read more
Rita Savelis Last year I had 2 valves replaced (with mechanical valves) and a third valve repaired. My valve problems came from having had radiation treatment for cancer as an adolescent. I feel for you as going through heart surgery a second time must be so hard to deal with. I'm on coumadin and it's not bad. One gets used to it. And being as young as you are there is something comforting about mechanical valves because they do last longer in young patients than tissue valves do....
Ed Miskovic Last Friday I had my AV Replacement with a minimally invasive sternectomy.(sp?). Afterwards one of th ... Read more
Ed Miskovic Last Friday I had my AV Replacement with a minimally invasive sternectomy.(sp?). Afterwards one of the surgical team said that because I was so young (age 69) to need surgery due to calcification the bicuspid valve that they found was the cause. Unfortunately I never knew I had this. Fortunately no other parts of the heart were damaged. I wasn't presented as a choice for me by either the cardiologist or the surgeon. The first reason I wasn't given a choice was that I had received coumidin about 10 years ago, on a stroke related diagnosis, and was taken off it after two weeks because both my fore-arms swelled and bruised. I felt I looked like a battered Popeye. So after this surgery I was not put on it but aspirin. I was told that in the past aspirin, was the protocol blood thinner for my type of procedure anyway. My point is nothing seems to be fixed. But flexibility is in the surgeon's decisions with statistically validate research and his/her experience. My valve is bovine. Because I had done my research from Adam Pick's book, I knew there were other options. The answers I was given were that for my age (69) the bovine would last 25-30 years, but if I were younger (30s) it might last 12-15. The reason for the difference is that my age group has lower metabolic rates with the older group having a lower rate so the bovine would last longer. Since I have been moderately active for the last 8 years, my mind-body recover is good, meaning I had my "tiny" muscle movement program going while laying in the ICU. This gave me hope. So if I knew that I was going to have future heart surgery I would specifically choose activities that build core muscles, train in the use of smooth body movements, and trains in muscle awareness in order to initiate movement from specific muscle groups (leg from lower abs). Pilates, Yoga, Tai Chi and the like are available. From my perspective the degree of skill level is not as important as the awareness of your own mind-body connections. Find and talk to some cardiac rehab therapist and get their advice on what pre-surgical preparation which would best meet your needs to minimize the post-op experience. I hope this doesn't sound like I'm spouting off. I do feel for your dilemma and will pray for your ability to meet the right medical practitioners for you.
Update posted on...
January 29, 2016
I just got my second opinion consult booked for Feb 18th with Dr Barnhart in Seattle. I've heard great things about him and I am hopeful that he can help me. I've been so stressed not having a plan in place, so I am going to try to put my worry aside until then, since there is literally nothing I can do about it. I've been having such a difficult time managing my anxiety around this and it's preoccupying my thoughts. I've already been through one open heart surgery and it was a rough and long recovery, which is probably why I have so much anxiety. So I'm trying to approach this differently than last time and I am arming myself with as much information and support as I can. I just got Adam's book and started reading it last night. I am so grateful to have found this community, where we can give and receive a kind of support only those of us with heart valve disease can truly understand.
Ed Miskovic I read your story and it sounds like you're doing what you can: learning from your own past experienc ... Read more
Ed Miskovic I read your story and it sounds like you're doing what you can: learning from your own past experience; learning from other people's experience at this website; gathering facts; reading Adam's book; getting a second opinion; advocating for yourself; and you've turned one anxious thought into an action plan in order to get your detailed plan in place. Congrats on redirecting anxiety into action.
Jean Knappik Hi Kate, you will be fine...I live in Pa. and went out to San Francisco to have my Aortic Valve and R ... Read more
Jean Knappik Hi Kate, you will be fine...I live in Pa. and went out to San Francisco to have my Aortic Valve and Root replaced by Dr. Castro. At first my recovery was rough: achy, short of breath and palpitations. Long story short I thought I was never going to feel good again, but by 6 weeks I felt great, so look it like you had you last valve 10 1/2 years ago how many more improvements they have come up with!
Lisa Thibodaux I am going through the same thing. I am having another echo done on February 19th. They wanted to ... Read more
Lisa Thibodaux I am going through the same thing. I am having another echo done on February 19th. They wanted to do surgery back in October but l asked for sometime to do some research. I have anxiety so bad!!! I can not sleep and I am having a hard time concentrating on my job. I am so scare of OHS and very scared of being on that breathing tube and coming to and realizing it. I know how you feel.
Jean Knappik I only remember a couple of minutes on the ventilator and at that point they removed it...my surgeon ... Read more
Jean Knappik I only remember a couple of minutes on the ventilator and at that point they removed it...my surgeon makes sure to get that out ASAP he knows it is high anxiety for people. I was so nervous I felt like throwing up before my surgery, but I have to say a lot of people on this web site helped me cope with some of it...you will both do fine, it is a big surgery, but you can do it. If you feel confident and comfortable with your surgeon that helps a lot.
Gail Magnus Hi Kate, I live in Seattle and am having surgery Monday. We should connect!
Kate Watson I keep reminding myself that a lot has changed in 10 1/2 years and it can only be better! I think th ... Read more
Kate Watson I keep reminding myself that a lot has changed in 10 1/2 years and it can only be better! I think the worst part was not knowing what to expect. But now I know, and can plan accordingly mentally. When I am having bad anxiety, I start having a lot more heart palpitations and pounding sensations, which only makes my anxiety worse because it makes me very aware of my heart issue. It's a vicious cycle. So Lisa, I totally feel for you. I think Ed makes some really good points that would likely help you as well. I'm also trying to focus on other, positive things in my life too to get my mind off of this, and planning for the future. Part of my challenge has been working on acceptance that I have to face this again because I was pissed off and depressed about it at first. But I am getting there, slowly...
Learning to be ok with the unknown
Journal posted on January 26, 2016
I've been struggling for the last few months since I got my last echo, which showed my replaced aortic valve declining and my mitral valve worsening. I wasn't ready to face and I don't want to face it. I want to run away from it, quite frankly. I'm waiting on another surgical consult, trying to ready my house to get on the market, and finding somewhere else to live due to my husband's new job. Because of all the changes and unknowns, I have been filled with anxiety and deep fears. Today I came across this poem and it brought me some peace. I am sharing it here in case in helps someone else today:
Let It Go by Donna Faulds
Let go of the ways you thought life would unfold: the holding of plans or dreams or expectations โ Let it all go.
Save your strength to swim with the tide.
The choice to fight what is here before you now will only result in struggle, fear, and desperate attempts to flee from the very energy you long for. Let go.
Let it all go and flow with the grace that washes through your days whether you received it gently or with all your quills raised to defend against invaders.
Take this on faith; the mind may never find the explanations that it seeks, but you will move forward nonetheless. Let go, and the waveโs crest will carry you to unknown shores, beyond your wildest dreams
or destinations. Let it all go and find the place of rest and peace, and certain transformation.
Sharmin Atker Good luck with your appointment and your move. The poem you posted should be inspiring to those wait ... Read more
Sharmin Atker Good luck with your appointment and your move. The poem you posted should be inspiring to those waiting for surgery - I wish I had seen this before my surgery.
Ed Miskovic Thanks for the positively upbeat poem.
Robert Osmachenko Thank you, Kate. That poem is fitting and always timely. One cannot push the river but go on faith. ... Read more
Robert Osmachenko Thank you, Kate. That poem is fitting and always timely. One cannot push the river but go on faith. Leave it in the hands of the Lord.
Anxiously awaiting second opinion
Journal posted on January 21, 2016
Hi everyone,
This my first journal post. I am glad to have found this community and have been so inspired by all of your stories!
I had open heart 10 1/2 years ago to replace my aortic valve. I got a bovine valve, which is now starting to decline but is not bad enough for surgery yet. Additionally, I have mitral valve stenosis that has recently progressed to the moderate-severe category and does need treatment. I am extremely scared because I have two valves affected and it's complicated to figure out the next steps, especially because I'm only 40 and want to minimize how many times I have surgery on my heart. I've have had one surgical consult, and he suggested I try balloon valvuloplasty on the mitral to see if we could avoid needing a replacement on that one. He said I'd still need open heart on the aortic, though and it's hard to say when. I decided to get a second opinion because I was concerned about how relatively few of the balloon procedures he has done and also want to be sure they are looking at the whole picture. I have been waiting for weeks to get all my records to this surgeon in another state. Once they get everything, I will have a phone consultation with him. In the meantime, I have so much anxiety and I burst into tears nearly every day at some point. I just need some clarity and need to know my next steps. How did you pick your surgeon? I am so overwhelmed by that alone. Sorry for the long post!
Kenny Knox Hey Kate, welcome! I'm young like you and just had my second valve replacement surgery. I chose the ... Read more
Kenny Knox Hey Kate, welcome! I'm young like you and just had my second valve replacement surgery. I chose the Cleveland Clinic because I only live a few hours away. No brainer. I was extremely impressed with the CC and I know a lot of people have had valves replaced there. Dr. Lars Svensson is one of their heavy hitters, I'd check him out. He is highly rated for 2ND amd 3Rd surgeries. I'd be glad to answer any questions. Good luck with your decisions!
Paige Rupe I hope you can find some peace soon with your condition. I personally have been followed by a cardiol ... Read more
Paige Rupe I hope you can find some peace soon with your condition. I personally have been followed by a cardiologist my entire life being affected by a congenital disorder, but in my experience cardiologists and especially surgeons look at the big picture very carefully in deciding how to proceed procedure-wise. I think it's a great idea to get a second opinion if that helps alleviate any anxiety you have. I hope the new surgeon you found will make you feel better about your expectations for surgery. Much love to you.
Ashley Cross I pray that your second opinion helps give you some answers!! I meet with several surgeons first. One ... Read more
Ashley Cross I pray that your second opinion helps give you some answers!! I meet with several surgeons first. One surgeon was very rude and said I was faking everything. I always get many opinions before I decide. If two surgeons that I see recommend surgery than I go with that. But I normally choose the surgeon that I connect best with.
Hi Kate, best wishes to you. I am sorry you are going through all of this. It doesn't seem fair, does ... Read more
Hi Kate, best wishes to you. I am sorry you are going through all of this. It doesn't seem fair, does it. I hope you find support through this site as I know it helped ease my anxiety with all my valve issues. Sounds like you are doing exactly what you should do, get second opinions and research your options! I am 40 and just had my first AVR on 12/1 due to stenosis from my bicuspid valve. I chose a bioprosthetic valve because I wasn't comfortable on long term blood thinners due to a family history with issues with them. My surgeon ended up putting in a valve that was on the larger end of my "window" with plans to implant a second bovine valve via transcatheter replacement in 10-15 years when I need the next replacement. We didn't discuss this prior to surgery, but I appreciated the forethought so I could plan to prolong having open heart surgery again. I hope you and your doctors are able to find options that work best for you and you are at peace with it.
John Schutte Kate, glad that you've joined this community. Like Kenny, I was highly impressed with Cleveland Clin ... Read more
John Schutte Kate, glad that you've joined this community. Like Kenny, I was highly impressed with Cleveland Clinic and Dr. Svensson, who performed my first bovine AVR on 30 September 2015. CC really is incredible; I cannot recommend Dr. Svensson or the facility highly enough. Regardless of where you choose to go for your second OHS, know that God has you in the palm of His hand and will see you through this valley.
Kate Watson Thanks for your input and support, everyone. I really appreciate it. It's comforting to know that t ... Read more
Kate Watson Thanks for your input and support, everyone. I really appreciate it. It's comforting to know that there are other people, including younger people who are going through this. I used to feel like such an alien with this condition. Though I'm sorry all of you have to deal with this too! My husband is of the belief that I should get as many opinions as I need until I find the right doctor. I live outside of Seattle, so I know there are many good surgeons there. But I just didn't feel confident in the one my cardiologist referred me to. I decided to try this other one in Chicago because my uncle, who is a retired cardiolologist, and needed open heart surgery himself, highly recommended the surgeon who did his surgery. This surgeon is very skilled in minimally invasive procedures and has excellent reviews. I find myself ruminating constantly about if it makes sense to even pursue a doctor in another state because the travel would be stressful on us right now. I also have to get out of my head that I'm somehow committing to one of them if I just have a consultation with them.
That is interesting Laura, that they plan to do the transcatheter approach. From what I've heard so far about that, I thought it was only for elderly frail people, but that is definitely way more appealing to me than going through open heart again.
I read your story. You have had a hard time with your previous experiences and I can understand why it starts to come back for you.
I can recommend my surgeon Dr. Clifton Lewis, at Princeton Baptist for a for a second opinion consultation. If you call his office, Gloria or Kirsten might be able to help get your records to his office.
I was having trouble with my cardiologist office and local hospital getting my records to him for a first opinion. Kirsten took initiative and got it all settled for me.
Dr. Lewis called me on the phone the day they arrived and we continued our discussion.
Here is an excerpt from on
WHY DR. LEWIS AND PRINCETON BAPTIST?
For the surgery I was facing, mitral valve repair, I wanted the following: 1) robotic surgery for a repair and not a replacement, 2) a surgeon who did a good number of these operations, and 3) a surgical/hospital team that had weekly experience with all that this would entail.
If I could get all three in Alabama, it would be much easier for my family to provide me with support during the process.
So I found that Dr. Clifton Lewis and his team are quite good. Some of the nurses told me while I was recovering at the hospital that he has done as many a 7 operations in one day although that is not his normal routine. They do the most valve surgeries in the country for non-university hospitals. Number 6 if you include universities. A hidden gem in Birmingham, Alabama.
The hospital is no 5 star hotel, but I felt like everyone was capable and interested in my welfare. The doctor was never far away and I saw him every day. The staff definitely know the way he wanted things done and ensured that things were taken care of.
My opinion is that Dr. Lewis might consider the robotic surgery on a broader array of clients than perhaps other doctors/hospitals because of his experience, the experience of his team, and his own strategies for success. But I can't really speak for him.
So, I felt that Princeton Baptist and Dr. Lewis' group had what I needed. My experience there confirmed these initial impressions.
Kate Watson Thank you Robert, thanks for sharing your experience!
Catrina Glover Kate,
Before I had my 1st surgery I definitely got a 2nd opinion. I think that is a wise thing. Im a ... Read more
Catrina Glover Kate,
Before I had my 1st surgery I definitely got a 2nd opinion. I think that is a wise thing. Im about to have a 2nd aortic replacement (getting a mechanical valve) & am using the same surgeon that did my 1st. I trust him and he is one of the best for the area.
U will know when its the right Dr. God will give u peace about it and there wont be any doubt that u are in the right hands.
I got my pig valve April 26th 2011. Scar tissue is causing it not to function properly so I am going in to have a mechanical valve put in. I am also 40. As much as I don't like the idea of taking coumadin, I'm more willing to deal with that now over anymore surgeries.
Michael Shaughnessy I had several opinions, including Lars Svenson at CCF, prior to my AVR and aneurysm at age 43. I cho ... Read more
Michael Shaughnessy I had several opinions, including Lars Svenson at CCF, prior to my AVR and aneurysm at age 43. I chose Akan Markowitz at University Hospital in Cleveland. The best! 4+ yrs out feel great. Full time physician, run 40+ miles/week, compete in triathlons, golf, no meds. I have pure organic biologic valve (Freestyle Medtronic). Get opinions get educated get living. Good luck!
Kate Watson Catrina- I know what you mean. I don't want to be on coumadin but I can't go through open heart ever ... Read more
Kate Watson Catrina- I know what you mean. I don't want to be on coumadin but I can't go through open heart every 10-15 years either. I'm sorry you have to go through it again so soon but hopefully you'll be healthy for a good long time after this.
Kate Watson Thanks Michael -that's very inspiring to hear! I'm so glad you are doing so great. I am just collec ... Read more
Kate Watson Thanks Michael -that's very inspiring to hear! I'm so glad you are doing so great. I am just collecting all the info I can and going to several surgeons until I find the right one. I decided I need to try to chill out and take this one step at a time. I'm trying to trust my intuition that I will find the right surgeon for myself.
Melinda Queliz I am not able to give any advice because I face my first open heart surgery in March however I just r ... Read more
Melinda Queliz I am not able to give any advice because I face my first open heart surgery in March however I just read your story and some posts and said to myself 'Wow, what an incredibly strong woman' and you seem to be facing it somewhat well. I have said this so many times but everyone on here is such a blessing to me. Remember God works in mysterious ways and although we may not understand your situation and having to face it again could very well be God leading you to be the strength and wisdom for someone else facing these things for the first time.
March 28, 2016