Jacqueline's Journal

Christine Oliva  Nice to hear from you and see you have been able to overcome this hurdle. Congratulations and enjoy your new and improved life. Its funny we can use this as ... Read more

Christine Oliva  Nice to hear from you and see you have been able to overcome this hurdle. Congratulations and enjoy your new and improved life. Its funny we can use this as a motivator to really enjoy and make a difference in our life. God's blessings to you and yours.

Jean Raber  I only have cats. I have a "bike to nowhere" for exercise. The cats lay on their little cushions and watch me. So it's sorta like exercising with them. I know ... Read more

Jean Raber  I only have cats. I have a "bike to nowhere" for exercise. The cats lay on their little cushions and watch me. So it's sorta like exercising with them. I know they're there for me in spirit (as long as they don't have to really DO anything).

Jacqueline Cook  Thanks ladies. Jean...I wholeheartedly agree with your wiener dog comment! And cats are awesome too...I grew up with them...unfortunately, my husband is allergic! ... Read more

Jacqueline Cook  Thanks ladies. Jean...I wholeheartedly agree with your wiener dog comment! And cats are awesome too...I grew up with them...unfortunately, my husband is allergic! Debbie..I'll have to check out your page for photos...

Sophia Ridley  That's wonderful news. You must be over the moon!

I had a similar report, I think I grinned from ear to ear for days afterwards! Just need to reduce the atrium ... Read more

Sophia Ridley  That's wonderful news. You must be over the moon!

I had a similar report, I think I grinned from ear to ear for days afterwards! Just need to reduce the atrium and my spectre of AF will hopefully be a distant memory.

I was going to check in with you regarding your eye aura.... What's the latest? Has it improved, if so what did you do? I have had the aura every morning for the last 10 days, BP and pulse all normal. It's beginning to irritate me even though passes in 20 mins.

Jacqueline Cook  Thanks for the messages ladies! Sophia...about the aura....I used to get this prior to surgery several times a month. Now I get if very frequently...seems like ... Read more

Jacqueline Cook  Thanks for the messages ladies! Sophia...about the aura....I used to get this prior to surgery several times a month. Now I get if very frequently...seems like every day or every other day. Mine typically pass in about 20 minutes also. I just make sure that if it happens when I'm out and about that I wait until it goes away before driving.

Kimberly Biddick  I am so sorry this has been such a frustrating experience for you! I hope that your cardiologist can get this sorted out quickly and get you some answers. ... Read more

Kimberly Biddick  I am so sorry this has been such a frustrating experience for you! I hope that your cardiologist can get this sorted out quickly and get you some answers. I am glad to hear the pericarditis is under control though!!

  Sounds like you are doing the best that you can do. Glad to hear the pericarditis is under control. Have your cardiologists looked at other tests besides an ... Read more

  Sounds like you are doing the best that you can do. Glad to hear the pericarditis is under control. Have your cardiologists looked at other tests besides an echo? We had a blip where we thought I may have a clot and I ended up with a 4D CT scan and it showed much better valve function (and a more reliable picture) compared to the echo I had. It sounds like your cardiologist is being vigilant about your care! Best wishes to you!

Jacqueline Cook  Thanks everyone. I am so very thankful for this community! Laura....I am considering traveling to UPMC to see the cardiologist that did the cardiac MRI when ... Read more

Jacqueline Cook  Thanks everyone. I am so very thankful for this community! Laura....I am considering traveling to UPMC to see the cardiologist that did the cardiac MRI when I was hospitalized in December. He was pretty adamant about getting a follow-up cardiac MRI 6-8weeks after starting the pericarditis treatment. I asked my cardiologist about the MRI and he seemed to think that it wasn't necessary at this time. But you are right....CT scans and MRIs are more in depth. They took thousands (literally) of images of my heart when I was at UPMC. I'll keep everyone posted.

Kelton Glewwe  Hello, I was diagnosed with pericarditis last June. I had all the common symptoms and I suffered for about a month before I got an x-ray that lead to an echo, ... Read more

Kelton Glewwe  Hello, I was diagnosed with pericarditis last June. I had all the common symptoms and I suffered for about a month before I got an x-ray that lead to an echo, and then the diagnosis. The echo also showed I had a leaking bicuspid aortic valve that may or may not be related to the pericarditis. I had no idea I had a heart issue until that day. I was admitted into the hospital immediately for the pericarditis. I had 2cm of fluid around my heart and it was effecting my heart function. I had the normal tests, CAT scan, Echo, TEE. They pumped me full of antibiotics and IV fluids. I felt like a water balloon. I was responding well to treatment and sent home after 2 days with ibuprofen and the colchicine. I followed up with my GP a day later and she sent me back to the hospital immediately. My pericarditis was not getting better and I looked, "like sh*t." In the hospital, it was then decided they would drain the fluid with a needle. I the procedure the next morning in a surgical lab. I was awake for the procedure. They drained .5L from my pericardium. I felt immediate relief.

I was sent home 2 days later with the Ib and colchicine. A week later after a follow up with my cardiologist, we did a cardiac MRI. It showed a lot of inflammation. I was put on a steroid treatment. That prednisone is an amazing drug short term. I felt better right away. I was on the prednisone for about 4 months. I gained about 15 lbs, but I was feeling much better. I started at a high 60mg dose and slowly tapered off.

On December 10th I had the aortic valved replaced with a bovine tissue valve. I'm still in recovery from that, but I'm doing great. The pericarditis sucked, but it was my early warning for the bad valve. I was able to get that fixed before it did any serious damage to me heart or aorta.

Good luck. I hope you feel better soon.

John Schutte  I had a bout of pericarditis that sent me back to the hospital for a week only one month after surgery. In retrospect, I suspect a large (5 cm) effusion behind ... Read more

John Schutte  I had a bout of pericarditis that sent me back to the hospital for a week only one month after surgery. In retrospect, I suspect a large (5 cm) effusion behind my heart is what pushed me into AFIB. Fortunately, my pericardium responded to the meds (colchicine and high dose ibuprofen). I was finally able to start cardiac rehab two weeks ago (10 weeks post op). Hang in there. Your patience and strength will help you get on the other side of this minor setback!

Jacqueline Cook  Thanks guys for sharing and for the encouraging words. John, I too am on the same meds. I feel like they are helping as my symptoms have disappeared. I see ... Read more

Jacqueline Cook  Thanks guys for sharing and for the encouraging words. John, I too am on the same meds. I feel like they are helping as my symptoms have disappeared. I see my cardiologist next week and will find out what he makes of my recent echo. My ejection fraction has plummeted. Not sure why. Thanks again for taking the time to respond!

Sophia Ridley  You guys are so lucky. I received my letter from NHS yesterday and unlikely to start any exercise class until February! I'm having to look into funding a private ... Read more

Sophia Ridley  You guys are so lucky. I received my letter from NHS yesterday and unlikely to start any exercise class until February! I'm having to look into funding a private one (not cheap!) as insurers won't pay. There's a issue on the classification of 'rehab' :(

Sophia Ridley  Yes, whilst in hospital I would get hot and then clammy. Now I get hot and cold, I start cold and then get uncomfortably hot and sweaty. I was wearing socks ... Read more

Sophia Ridley  Yes, whilst in hospital I would get hot and then clammy. Now I get hot and cold, I start cold and then get uncomfortably hot and sweaty. I was wearing socks and when I take those off I feel better. Been told it's medication and aftereffects of surgery (seems to be a stock answer!). I'm awaiting blood test results for iron, electrolytes and thyroid (underactive already). Do suggest you have a chat with doctor, I'ld be interested to hear what they have to say.

Jacqueline Cook  Hi Jean and Sophia. Thanks for the comments. I have a call into Cleveland Clinic about it....I'm at 5 weeks post op and I've been off my pain meds for about ... Read more

Jacqueline Cook  Hi Jean and Sophia. Thanks for the comments. I have a call into Cleveland Clinic about it....I'm at 5 weeks post op and I've been off my pain meds for about 2.5 weeks. I was told by CC in the beginning that this was typical with all the meds. It just seems like it is going on a lot longer than I anticipated. I have to get up 2 to 3 times in the night to change my pjs. Not getting much sleep as a result. Sophia, how long has it been since you had your surgery?

Sophia Ridley  I'm 4wks post. Apart from in hospital I never needed to change my night wear during the night. It certainly needs washing daily! Do get them to check thyroid. ... Read more

Sophia Ridley  I'm 4wks post. Apart from in hospital I never needed to change my night wear during the night. It certainly needs washing daily! Do get them to check thyroid.
Sleep - oh! What joy that would be! I seem to never get comfortable, get up every 2 hrs and then morning comes and I'm out for the count :(

  I did, especially when I first got home! My BP was out of whack. I also froze my family out of the house because I was so hot. It has gotten better and we are ... Read more

  I did, especially when I first got home! My BP was out of whack. I also froze my family out of the house because I was so hot. It has gotten better and we are now at a more comfortable temperature according to my family! Good luck!

Jacqueline Cook  Hi Jean and all...I saw my cardiologist on Monday and he was actually quite concerned about the night sweats. He sent me for blood work, blood cultures, urinalysis, ... Read more

Jacqueline Cook  Hi Jean and all...I saw my cardiologist on Monday and he was actually quite concerned about the night sweats. He sent me for blood work, blood cultures, urinalysis, CT scan, and an echocardiogram. He managed to make all this happen before we left for Pittsburgh on the 23rd! I will let you know what the tests reveal. All I know right now is that my white blood cell count is elevated and he is concerned about possible infection.

Jacqueline Cook  Hi girls. Emily, I requested that the chaplain come but I am pretty sure she was hanging out in the pre-op area. She also came and visited me once I was moved ... Read more

Jacqueline Cook  Hi girls. Emily, I requested that the chaplain come but I am pretty sure she was hanging out in the pre-op area. She also came and visited me once I was moved to the step-down unit. She did that on her own...

Christine Oliva  Jacqueline, that incisional pain is 100% normal and as you can see it will get better. The nerves coming back on-line seems to be a consequence of the surgery ... Read more

Christine Oliva  Jacqueline, that incisional pain is 100% normal and as you can see it will get better. The nerves coming back on-line seems to be a consequence of the surgery and you may have additional pain when you start rehab as I am now doing. Actually, the pain is a sign that you are healing normally and no pain means loss of nervous sensation which is not result you want. The good news any discomfort will be a lot less than those first few days in the hospital. Nothing that a Tylenol/pain tab cant handle-. Yea!

Keep your incision clean and dry, no direct hits with the shower head now, kind of trickle down & dry with separate towel if you can. Just remember less scaring with a nice dry incision. Good luck dear and keep on your path to recovery. Fingers crossed for you.

Tim Goff  Good to hear you are on the mend! It can be a slow process full of strange beats, aches, etc, but on the whole it gets better every week. The hr may stay a ... Read more

Tim Goff  Good to hear you are on the mend! It can be a slow process full of strange beats, aches, etc, but on the whole it gets better every week. The hr may stay a bit higher than you are used to, just part of the deal. Mine used to be about 70 at rest yet now Im likely in the 80's. The cardiologist told me to get living and quit worrying about the hr. so I did. Now 9 months out.

Michael Meyer  Jacqueline:

I did have both an elevated heart rate during rehab (after coming off toprol). I also had some sinus tachycardia upon waking. I did call CC, ... Read more

Michael Meyer  Jacqueline:

I did have both an elevated heart rate during rehab (after coming off toprol). I also had some sinus tachycardia upon waking. I did call CC, but they indicated no information for me.

I went to the cardiologist and completed some thyroid testing bloodwork. Long story short the tachycardia resolved itself for me around 9-10 months and my resting heart rate is back to normal. As others have said it may take some time an patience.

Melinda Queliz  Jacqueline--I am looking to have my valve repaired at Cleveland Clinic as well and am just in the beginning stages getting all my records and trying to get ... Read more

Melinda Queliz  Jacqueline--I am looking to have my valve repaired at Cleveland Clinic as well and am just in the beginning stages getting all my records and trying to get in, I will be traveling from North Carolina. I am absolutely terrified of all of this. My biggest fears are: heart cath, chest tubes, IV in neck, heart wires. How much do those hurt? I hope to be drugged on some pretty good stuff through all that. I will say your recovery is making me feel a little at ease.

Christine Oliva  Jacqueline good luck today and stay strong for the recovery. Its four week post op and would I do it again, yes I would. I would for now and for my future with ... Read more

Christine Oliva  Jacqueline good luck today and stay strong for the recovery. Its four week post op and would I do it again, yes I would. I would for now and for my future with my family. Its tough, but it can be done. BTW, absolutely love your friend. He is adorable and what is great you look at peace. Blessings to you and your family!

Tim Goff  Enjoy the weekend and the company of family. Many find the last few day's to be relaxing as all the decisions have been made and nothing left to do but enjoy ... Read more

Tim Goff  Enjoy the weekend and the company of family. Many find the last few day's to be relaxing as all the decisions have been made and nothing left to do but enjoy the time with those around you. Soon you will be on the other side of this and recovering. Best wishes for a smooth procedure.

Emily Rowley 
Hello Jacqueline,

Firstly I hope your operation and recovery goes well :) I had my mitral valve repaired few years ago (but not using any robotic equipment). ... Read more

Emily Rowley 
Hello Jacqueline,

Firstly I hope your operation and recovery goes well :) I had my mitral valve repaired few years ago (but not using any robotic equipment).

The relaxation music is a good idea, I'm going to do that too, so I can listen to it in Hospital (also having mine on the 18th but in January)

Also about the bra, I'm ordering an Aztec Surgical Bra, you might like.

Best of Wishes,
Emily.

Elaine Cutri  For a few weeks I wore a snug, not tight, camisole with cotton with spandex. The surgical NP said no underwire until the tissue was healed (worked for me). ... Read more

Elaine Cutri  For a few weeks I wore a snug, not tight, camisole with cotton with spandex. The surgical NP said no underwire until the tissue was healed (worked for me). After many weeks with the camisole, I found a sport bra 2 sizes larger that I was comfortable wearing. It went on from bottoms up. I had a full sternotomy and I did not want to cause injury or pain to myself by trying to negotiate it over my head. My husband always chuckled when he saw me working it on :-).

susan kotansky  I found the pressure from any bra very irritating so I've been wearing snug undershirts and am very comfortable. Hopefully you won't even have to think about ... Read more

susan kotansky  I found the pressure from any bra very irritating so I've been wearing snug undershirts and am very comfortable. Hopefully you won't even have to think about it if the robotic surgery is possible. I wish you the very best!!!

Christine Oliva  I used either a one size/roomy larger tank tops or cami with a sports bra. I don't need a lot of support so it worked. Keep the fabric lite/wicking and definitely ... Read more

Christine Oliva  I used either a one size/roomy larger tank tops or cami with a sports bra. I don't need a lot of support so it worked. Keep the fabric lite/wicking and definitely not binding or tight, no wires at all. Most important protect your incision and keep comfortable.

Connie Jewell  Good luck with your upcoming surgery, Jacqueline. I'm 18 months post aortic valve replacement and believe it or there are times I almost forget I even had it ... Read more

Connie Jewell  Good luck with your upcoming surgery, Jacqueline. I'm 18 months post aortic valve replacement and believe it or there are times I almost forget I even had it done. Going into it, it seems overwhelming but you'll see improvement faster than you think. As for the bra issue I normally wear an underwire, so that was out for sure. I found this one on Amazon called, Leading Lady Women's Sleep Leisure Cotton Bra, it worked great for me, and it's a front closure. Hope this helps with your question and again good luck with your surgery, you're in all our thoughts and prayers.

Enrique K  Hi Jacqueline, Many thoughts and prayers for you as you face your upcoming surgery. Hope to hear from you soon that all is well and you are on the mend. You ... Read more

Enrique K  Hi Jacqueline, Many thoughts and prayers for you as you face your upcoming surgery. Hope to hear from you soon that all is well and you are on the mend. You painted your room and I bought a new bed. New Heart-New Bed!

Jacqueline Cook  Yes! Doran. The waiting is the hardest part. Can you imagine if they had not been able to move me up? I'd be waiting until December 17! Enrique...well...this ... Read more

Jacqueline Cook  Yes! Doran. The waiting is the hardest part. Can you imagine if they had not been able to move me up? I'd be waiting until December 17! Enrique...well...this is a huge event in our lives right! Nice to do something special in preparation! Thanks guys for the encouraging words. I will keep you posted.

Betsey Osgood  You'll be on the healing side of this journey sooner than later! Praying the day's ahead include relaxation, acceptance and strength. You got this...keep ... Read more

Betsey Osgood  You'll be on the healing side of this journey sooner than later! Praying the day's ahead include relaxation, acceptance and strength. You got this...keep us posted. Interested in hearing about the robotic MVR experience!

Elaine Cutri  It was very positive. I felt safe in their care. They are very experienced and use it to make little improvements in your immediate care that lend itself to ... Read more

Elaine Cutri  It was very positive. I felt safe in their care. They are very experienced and use it to make little improvements in your immediate care that lend itself to a faster recovery. The nurses were super at monitoring my care, keeping me comfortable and in good spirits.

I had a slight downturn just after discharge, fluid build up behind my right lung, due to having previous OHS surgeries. It was annoying, not life threatening. I ended up being readmitted to CC. I'm on Coumadin so they had to wean me off, do the 20 minute procedure, and get me back up to therapeutic levels before discharge. Once that was gone my recovery picked up steam and a few days later I was on a plane heading back to California. I'm only sharing this with you because it was a hiccup that was handled well. It sounds like the robotic procedure will be much easier on your body. I'll keep good thoughts and prayers going your way. - Elaine

Jean Raber  If it were me (and I realize you're not), I would assume that the surgeons are recommending the procedures they feel most comfortable with. Given that they ... Read more

Jean Raber  If it were me (and I realize you're not), I would assume that the surgeons are recommending the procedures they feel most comfortable with. Given that they both have great reps and stellar outcomes, I'd go with what you think is best for you. You probably can't lose either way.

John Noriega  Understand your concern. If this were me, I believe I'd go with their decision based on the fact that this is their speciality. The success rate is way up there ... Read more

John Noriega  Understand your concern. If this were me, I believe I'd go with their decision based on the fact that this is their speciality. The success rate is way up there to not consider it. Always remember that the final decision is yours! Onward & Upward!

Steven A Husted  if it were me i would go with the mini sternotomy god forbid if something were to go wrong i would rather have a human there than a robot just my opinion but ... Read more

Steven A Husted  if it were me i would go with the mini sternotomy god forbid if something were to go wrong i would rather have a human there than a robot just my opinion but with modern technology who knows what a robot can do it is a hard choice i know best wishes and prayers pray about it the lord will help you decide

Cheryl Batzing  Jacqueline, I had a side entry mitral valve repair (not robotic, but minimally invasive none the less) last December. Also had a high success rate. Only thing ... Read more

Cheryl Batzing  Jacqueline, I had a side entry mitral valve repair (not robotic, but minimally invasive none the less) last December. Also had a high success rate. Only thing I was unaware of until afterwards is the recovery process. I am a total baby and was not told the initial pain/recovery....until the ICU nurses told me my form of surgery was the most initial pain. Yikes! Probably would have chosen the same surgery again, but that would have been good to know in advance! Prayers for your decision.

Tim Goff  Sounds like you are making good progress with confidence in your decisions. That will surely help to ease or eliminate most of your apprehensions going into ... Read more

Tim Goff  Sounds like you are making good progress with confidence in your decisions. That will surely help to ease or eliminate most of your apprehensions going into surgery. Keep up the good work and best wishes your way

Tammy Pilcher  I'm glad you had a good appt. with your doctor, Jacqueline. I had a mini-sternotomy (3 inches) and have been very pleased with mine. It means so much to have ... Read more

Tammy Pilcher  I'm glad you had a good appt. with your doctor, Jacqueline. I had a mini-sternotomy (3 inches) and have been very pleased with mine. It means so much to have a great feeling about your surgeon and hospital. It was a huge relief for me when I met my surgeon and immediately felt like I was in the right place! We walked into the lobby of his office and hanging on the wall in a prominent place was a huge painting of surgeons performing a surgery and Jesus was standing with them with His hand on the shoulder of one of the surgeons. I told my husband that we were in the right place. Then when we met my surgeon, we both knew he was the one we wanted to do it. God had worked everything out perfectly for me. He will for you too. God bless!

Tracy Herman  Dr Badhwar replaced my aortic valve Feb 11 2014 at UPMC Presbyterian in Oakland
Cannot say enough about Dr. Badhwar and his team. Surgery was on Tuesday went ... Read more

Tracy Herman  Dr Badhwar replaced my aortic valve Feb 11 2014 at UPMC Presbyterian in Oakland
Cannot say enough about Dr. Badhwar and his team. Surgery was on Tuesday went home Saturday. Had a mini sternomy. My photos show incision 24 hrs after and what it looks like today. Did not really experience any pain Recovery was uneventful. I would be more than happy to try and answer any of your questions or concerns

Jacqueline Cook  Thanks, Michael! I am now scheduled with Dr. Badhwar on October 12. As you shared, Cleveland Clinic has quite a process before you can even schedule an appointment. ... Read more

Jacqueline Cook  Thanks, Michael! I am now scheduled with Dr. Badhwar on October 12. As you shared, Cleveland Clinic has quite a process before you can even schedule an appointment. Seems I am going to have to wait until I have my heart cath complete before I send off all of my records. Seems they also like to do everything electronically. I left a message to speak with someone and have yet to hear back. Any tips on speeding up the process?

Jacqueline Cook  Michael. Please disregard the previous note. Interestingly enough, I got a call from a lady named Mary Jo at Cleveland Clinic yesterday afternoon. Apparently, ... Read more

Jacqueline Cook  Michael. Please disregard the previous note. Interestingly enough, I got a call from a lady named Mary Jo at Cleveland Clinic yesterday afternoon. Apparently, my cardiologist sent them everything they need (to date). She gave me her direct number and told me to call her back if I don't hear anything by Friday. The ball is rolling! :-)

Jeanette Davidson   Jacqueline~
Sounds like you are getting all of your ducks in a row. It is a huge decision , so I hope you find confidence in all of your choices. Keep praying. ... Read more

Jeanette Davidson   Jacqueline~
Sounds like you are getting all of your ducks in a row. It is a huge decision , so I hope you find confidence in all of your choices. Keep praying. I don't usually pray for myself. But three months prior to my surgery , every day I had one prayer , which was "no complications." My prayers were answered. And let's expect that yours will be too ! Stay strong and keep reaching out!💕

Tim Goff  Glad you updated us and here's to hoping all your tests are routine and easy. Instead of the heart cath which my surgeon felt was too invasive they injected ... Read more

Tim Goff  Glad you updated us and here's to hoping all your tests are routine and easy. Instead of the heart cath which my surgeon felt was too invasive they injected me with a dye, then a small dose of nitro while taking an mri of sorts. It generated a cool picture of my cardiac area! Best of luck selecting a surgeon and center it is a process worth going through. Keep us updated.

Rosemary Resler  Jacqueline I asked my surgeon if he was going to do the surgery and he assured me that HE was the one doing the surgery. I had though about the same thing having ... Read more

Rosemary Resler  Jacqueline I asked my surgeon if he was going to do the surgery and he assured me that HE was the one doing the surgery. I had though about the same thing having been in teaching hospitals before. Bad enough we have to have this done without worrying over WHO is going to do it!

Michael Meyer  Jacqueline: Just ask. My surgeon repaired the heart valve. The chest incisions and closures are likely to be done by a fellow. I did not find that to be ... Read more

Michael Meyer  Jacqueline: Just ask. My surgeon repaired the heart valve. The chest incisions and closures are likely to be done by a fellow. I did not find that to be a problem. My surgery was done at Cleveland Clinic.

Tracy Herman  I saw your question about Dr.Badhwar. He replaced my stenotic aortic valve on 2/14 at UPMC Presbyterian in Oakland. Very experienced surgeon and his team is ... Read more

Tracy Herman  I saw your question about Dr.Badhwar. He replaced my stenotic aortic valve on 2/14 at UPMC Presbyterian in Oakland. Very experienced surgeon and his team is wonderful. I would be happy to answer any questions I can

Jacqueline Cook  Thanks so much Tracy. I would love to talk with you about your experience. My husband's entire family (or just about) lives in Pittsburgh. It would be a great ... Read more

Jacqueline Cook  Thanks so much Tracy. I would love to talk with you about your experience. My husband's entire family (or just about) lives in Pittsburgh. It would be a great place logistically speaking for me to have the surgery. My email is jrcook3301@me.com. Perhaps we could exchange contact information and chat by phone?

Jeanette Davidson   Sounds like a good experience. Most importantly, I'm really happy that you made a connection with the cardiologist. It's going to make the world of difference ... Read more

Jeanette Davidson   Sounds like a good experience. Most importantly, I'm really happy that you made a connection with the cardiologist. It's going to make the world of difference for you. As you go through this process you will become more and more prepared for surgery. One step at a time Heart sister💕

Jean Raber  Glad you got good info! My TEE was quick, painless, and it was done to determine whether the MV regurg was "severe" or "moderate." I woke up groggy and the ... Read more

Jean Raber  Glad you got good info! My TEE was quick, painless, and it was done to determine whether the MV regurg was "severe" or "moderate." I woke up groggy and the cardiologist smiled and said, "moderate, we'll talk more at your follow-up in a couple of days." Then I got more of the details and the news that the valve could probably be repaired rather than replaced and etc.
Different tactic, but there are lots of ways to be a good doctor, no?

Terry Shermeister   Jacqueline Hi, I'm Terry. Just read your journal and the TEE experience. Just writing because I remember when I first went in for mine. It started early ... Read more

Terry Shermeister   Jacqueline Hi, I'm Terry. Just read your journal and the TEE experience. Just writing because I remember when I first went in for mine. It started early March, I had my MVR on May 14th, and now am 14 weeks post-op. I'm biking, swimming, walking, lifting weights and doing yoga. I had the Chordae repaired, my posterior leaflet sectioned and a ring placed to strengthen the Mitral Valve, like a "door frame. My surgeon was fantastic. When I had my surgery I had no symptoms, my heart function was normal, but I did have severe regurg. I agree with Jeanette and Jean. Ask questions, advocate, and trust your feelings.

Cheryl Batzing  Jacqueline, your story sounds very similar to mine. I had a mitral valve "parachute" cord "broken/flailing" as well, and severe regurgitation that was found ... Read more

Cheryl Batzing  Jacqueline, your story sounds very similar to mine. I had a mitral valve "parachute" cord "broken/flailing" as well, and severe regurgitation that was found last mid October, and had minimally invasive mitral valve repair surgery mid Dec. I'm doing well now at 8 months post op. Please ask any questions you have and know you have a huge supportive community here! Prayers to you!

Tim Goff  Good that now they, and you, have a clearer picture of the situation. I too had some ruptured chordae to go with the tattered valve and the swollen atrium. ... Read more

Tim Goff  Good that now they, and you, have a clearer picture of the situation. I too had some ruptured chordae to go with the tattered valve and the swollen atrium. The surgeon too care of all of is as will yours to repair the valve and replace the chordae. It is amazing and life saving work. Most of this is "mental" preparation on the front side so hang in there with positive thoughts that you are lucky they spotted it and will take care of you.

Jacqueline Cook  I do not know how I would be managing everything going on with my heart without you all!!!! I wish we had the ability to make individual comments below each ... Read more

Jacqueline Cook  I do not know how I would be managing everything going on with my heart without you all!!!! I wish we had the ability to make individual comments below each person's post. (If we do and I just haven't discovered it yet, please give me some instructions on how.) Instead, I am sending warm thoughts and big hugs to each of you individually in this "collective" post.

Rosemary Resler  I had the TEE done last week, it's like getting an endoscopy. They put me out and it was really fast and pain free. I was there a total of 3 hours from time ... Read more

Rosemary Resler  I had the TEE done last week, it's like getting an endoscopy. They put me out and it was really fast and pain free. I was there a total of 3 hours from time I went in to discharge. I had no side effects and we went straight to IHOP to eat. I hope your procedure goes as smoothly, which is the norm from what I've been told. Good luck Jacqueline.

Tim Goff  The TEE is an excellent test for your valve performance/condition. Mine was a breeze, try not to be nervous. It hopefully will give you peace of mind knowing ... Read more

Tim Goff  The TEE is an excellent test for your valve performance/condition. Mine was a breeze, try not to be nervous. It hopefully will give you peace of mind knowing that the surgeons now have better information to go on. Look forward to hearing an update.. hang in there

Jean Raber  TEE: You go to sleep, you wake up about 45 minutes later a bit groggy. Woke up on the way home. No pain at all. Have someone get the bottom line from the doc ... Read more

Jean Raber  TEE: You go to sleep, you wake up about 45 minutes later a bit groggy. Woke up on the way home. No pain at all. Have someone get the bottom line from the doc after the procedure so you'll know what he/she saw. In my case, it was to determine if the mitral valve regurg was moderate to severe. Told Raber, just needed to know "moderate or severe."

Gloria Savannah-Austin  I had a TEE....was pretty fast and painless, except the IV part, always dislike that, they stick me 2-3 times before they can get a line in. Otherwise- easy ... Read more

Gloria Savannah-Austin  I had a TEE....was pretty fast and painless, except the IV part, always dislike that, they stick me 2-3 times before they can get a line in. Otherwise- easy test, have someone with you to get the results, as you are a bit groggy waking up.

Lynne Ladd  Hi Jaqueline - I am 4 weeks in recovery from Mitral Valve Repair due to prolapse. I am just reading your journal and getting caught up on your journey. I ... Read more

Lynne Ladd  Hi Jaqueline - I am 4 weeks in recovery from Mitral Valve Repair due to prolapse. I am just reading your journal and getting caught up on your journey. I relate to your shock at having to face surgery. I, too, had no other cardiac symptoms and in fact did not know that I had a heart murmur. I went for the stress echocardiogram in early May and was told on the spot that I needed surgery within a few months. Severe regurgitation. My only symptoms were unexplained fatigue and only recently, breathlessness. I drove home in shock. Life has been a whirlwind since then.
The TEE I experienced was as everyone here has described. Painless, quick 45-60 min procedure, with minimal recovery from the 'twilight sedative'. Over before you know it. Praying for good results and no other complications.
I have a great medical team and cardiac team in Newport Beach CA. So, cannot offer suggestions on selecting a surgeon. It looks like you are being very thorough, the friends here have given you some excellent suggestions, and you have some great medical locations nearby to choose from.
Look forward to hearing more about your journey. And hope I can be of some help and support along the way. I only discovered this community a week ago and have already been encouraged beyond belief by the wonderful fellow heart sisters and brothers out there!!

Jacqueline Cook  Thanks to all of you for the support going into the TEE. The test was just as all of you have described. Still have a bit of a sore throat this morning but ... Read more

Jacqueline Cook  Thanks to all of you for the support going into the TEE. The test was just as all of you have described. Still have a bit of a sore throat this morning but doing well. I will post more on the results in my next journal entry. P.S. I cannot tell you how grateful I am for all of you here. This community is amazing! I am so very blessed to have found it!

Jeanette Davidson   I really took the time to search for my doctors. If you don't feel comfortable with your doctor, I encourage you to keep looking. I think it's all about the ... Read more

Jeanette Davidson   I really took the time to search for my doctors. If you don't feel comfortable with your doctor, I encourage you to keep looking. I think it's all about the fit and it really makes a difference in your journey. Good luck heart sister💕

Jacqueline Cook  Thanks so much Jeanette. I will have a different cardiologist with the same group doing my TEE. I am hoping that I feel more of a "connection" with him. It ... Read more

Jacqueline Cook  Thanks so much Jeanette. I will have a different cardiologist with the same group doing my TEE. I am hoping that I feel more of a "connection" with him. It took me a while to warm up to my cardiologist in Seattle. Now that we've moved to PA I am starting the process (seemingly) all over again. My husband and I discussed the visit on a walk last night. I guess what I don't want to do is prolong the tests while I am trying to find a cardiologist. We decided that I would go ahead and do these "work ups" and go from there. How did you determine the right doctors for you? Did you have people who referred you? Or did you decided based on their credentials and level of experience? It's funny, I have 3 surgeons already in mind when we get to that point. Here I am struggling with finding a really good cardiologist in our area. I welcome your input. Thanks for the encouragement! Means a lot!

Jeanette Davidson   Jacqueline, I went to five surgeons and received so many differing opinions. It was a quite confusing and complicated time for me. I chose my surgeon based ... Read more

Jeanette Davidson   Jacqueline, I went to five surgeons and received so many differing opinions. It was a quite confusing and complicated time for me. I chose my surgeon based on the amount of experience he had and the connection I made with him. He and his anesthesiologist have been together working in the hospital for 30 years. Because my situation was tricky due to my damage caused by radiation treatment from cancer many years ago . Then I went ahead and asked him to refer me to a medical cardiologist. I wanted to be in relationship with him prior to being in the hospital because I knew he would be tracking me post surgery. I liked him very much when I met him he was very bright and young and state-of-the-art differing from the surgeon, at a complement to him and part of their entire team.But those are my needs with a cardiologist. Although he is one hour from my home it was the best decision for me and he even said to me post surgery that it was really smart that we did it that way. Thank God it worked to my advantage. Good luck !

Nancy D  I think you have to be comfortable with your doctors as well. Post op I saw my surgeon while I was in hospital, but my post discharge appointment was with ... Read more

Nancy D  I think you have to be comfortable with your doctors as well. Post op I saw my surgeon while I was in hospital, but my post discharge appointment was with the surgeon's Nurse Practitioner who while quite nice had no idea about me and my procedure and had to read his notes to me when I asked questions. I was discharged from his care after this one appointment. My cardiologist was the one who with my Primary Care Dr who saw me the most and continues to follow me today. I asked my PCP for a cardiologist referral, and while he recommended one who wasn't available for 2 weeks, the one I saw was his second choice and we relate very well and he is young and sharp and well respected. I agree with Jeanette on this one. Take the time to assemble a team you have confidence in, and you have time to make appointments while you are awaiting your testing.....Good luck in your search for the best team possible for you!

Jacqueline Cook  Jeannette and Nancy. I appreciate your thoughts and support. What both of you have written is very helpful and very much in line with my "gut" feelings on the ... Read more

Jacqueline Cook  Jeannette and Nancy. I appreciate your thoughts and support. What both of you have written is very helpful and very much in line with my "gut" feelings on the matter. You have both affirmed my need to feel comfortable and confident in my cardiologist (whomever that ends up being) because long term this is the person I will continue to see on a regular basis. The good thing is that there are many highly esteemed cardiologists in the group my PCM referred me to. Right after I posted this morning, I received a call to set up my TEE appointment. It will take place on August 19. The girl who scheduled my appointment informed me of the doctors available to do the procedure. I was then able to look each of them up and decide (based on credentials and my gut) which one I preferred to see. This doctor also works out of the group's office that is closest to my house. So in the event that I do feel more of a connection with him it will be very easy to start seeing him instead of the doctor I saw yesterday. Thanks again for validating my concerns and sharing your experiences. I am so thankful to have found this community. I think I would be quite lost without it!

Nancy D  Jacqueline- trust your gut! Even with posts on here there will be some that ring true and others that don't. In this out of your control experience, you have ... Read more

Nancy D  Jacqueline- trust your gut! Even with posts on here there will be some that ring true and others that don't. In this out of your control experience, you have to gain what little control over it, and that starts with selecting the right choice of the team you trust to care for you. Not that the dr you spoke to yesterday isn't highly qualified, and respected, but personality isn't suited for you! and yes, your cardiologist is the one you will be followed by the longest- the only one more so is your primary care doctor! I saw so many different doctors; one did the TEE, another read the stress tests and Echocardiograms, and those I never saw again. But my key care providers I had to have a good working relationship with, and comfortable conversation. Good luck in your finding of your team!!!

Clare Auten  I "lucked" into my cardiologist. My GP wanted me to see a certain one but she was booked solid for weeks. So, I saw one of her partners. My husband and I were ... Read more

Clare Auten  I "lucked" into my cardiologist. My GP wanted me to see a certain one but she was booked solid for weeks. So, I saw one of her partners. My husband and I were super comfortable with him from the minute we met him. Hope you can find the right doctor.

Sonny Abbasi  Interesting. My primary care physician is friends with the Cardiologist but everybody said the Cardiologist mis-diagnosed me i.e. didn't seem to understand ... Read more

Sonny Abbasi  Interesting. My primary care physician is friends with the Cardiologist but everybody said the Cardiologist mis-diagnosed me i.e. didn't seem to understand the severity of the aortic stenosis. I went to another one for a second opinion who did a TEE in lieu of the stress test the first one was recommending. My uncle who is a Cardiologist said the first one should be doing a stress test if the stenosis is in fact severe. He said go get a second opinion first and if the second cardiologist recommends a stress than only than do it. He recommended a TEE instead. I go to Cleveland and the first cardiologist said why did you wait so long for surgery? The Cardiologist that did the Cardiac Catherization at Cleveland told my mother that the surgery should have been done a year ago. Same thing the second opinion guy said here. The surgeon at Cleveland said when we saw the aortic valve, it looked worse than the tests. I come back to the Primary Care Physician and she goes are you going back to her friend, my original cardiologist. I said no thank you, I am going back to Cleveland for the echos. Everybody said the echo 1 and 1/2 years ago was probably way off as well in that first cardiologists' office. So the technician was off as well.

Jacqueline Cook  Hi Sonny. I really appreciate the detailed explanation of your experience with the cardiologists. I kind of have a similar situation going on with the back ... Read more

Jacqueline Cook  Hi Sonny. I really appreciate the detailed explanation of your experience with the cardiologists. I kind of have a similar situation going on with the back and forth over how severe my mitral valve regurgitation is (or is not).

My cardiologist in Seattle followed me for over a year. Initially he identified me as severe and wanted to set me up with a halter monitor study, then a TEE followed by a heart cath. He believed that I needed surgery at that time. Something happened with their halter monitor machine just prior to the day I was supposed to pick it up so they opted to do another echo (not sure the logic in that?). At that visit my cardiologist "downgraded" my regurgitation to moderate/severe. He told me to "have a nice summer" and "see you in 6 months" for a follow up. The next echo (Feb. 2015) revealed no significant changes and then the last echo (June 2015) revealed severe regurgitation. I questioned all along about surgery and whether waiting could make a difference in my options (i.e., open heart vs minimally invasive or repair vs replacement) for my mitral valve. He assured me during every visit that "watching and waiting" was best for my case..until the June echo. This is when I was told that "the guidelines" have changed and they are now recommending surgery "sooner than later" for asymptomatic patients with severe regurgitation. If we had stayed in Seattle, he would have set me up for a TEE and heart cath and referred me to Swedish (one of the hospitals identified as a reputable valve hospital here on Adams website). Instead, he told me that once we got settled in PA, I needed to find a "cardiac center of excellence" and a surgeon who has done thousands of mitral valve repair procedures with "at least" a 90% success rate.

Now, of course, it is not as simple as that. I have had to take the necessary steps to get myself established in a new location. Fortunately, my new PCM has been great about getting things moving. However, I think what makes me uneasy about the cardiologist that I saw on Monday (besides the lack of eye contact) is that he seems to think that I shouldn't be so concerned about "rushing" surgery. Yet, I don't think I am "rushing" anything. And if I could simply opt out of surgery altogether or hold it at bay for a few more years I certainly would! Bottom line is that I don't want a surgeon asking me (like your surgeon asked you) "why did you wait so long?"

For this reason, I am ok with him referring me to one of his colleagues for the TEE. This is also what my cardiologist in Seattle would have done next. So that makes two doctors that are in agreement about a TEE as the next step. The cardiology institute has a great reputation here in the region. I have done some research on the cardiologist who will do the TEE. He seems to be well liked and highly credentialed. But how do you know for sure? Would you mind sharing your experience with getting the TEE done?

As far as the stress test goes....do you know the purpose? Are there any risks? My cardiologist in Seattle never even mentioned doing one.

Also, would you mind sharing about your experience at the Cleveland Clinic. It is one of the hospitals that I am considering for my surgery.

***Please feel free to direct me to your journal if you have detailed information about your experiences there :-)

Thanks again for your input! I really appreciate it!

Sonny Abbasi  I have detailed posts in the Journal and in other posts. I had aortic valve replacement and the stress test would have been to determine if my symptoms were ... Read more

Sonny Abbasi  I have detailed posts in the Journal and in other posts. I had aortic valve replacement and the stress test would have been to determine if my symptoms were related to other factors such as weight, mild asthma, being out of shape (unlikely because I went to the trainer regularly) or the aortic stenosis. However, several cardiologists told me that was "old medicine" i.e. the stress test. My uncle told me before surgery do not do a stress test for severe stenosis and blame him if I have to. When I told him that the surgeon said the valve looked worse than the tests, he said good thing I didn't let you do the stress test. Basically, he agreed with the TEE--the same thing the second opinion cardiologist said.

The problem was the cardiologist that was recommending the stress test wanted me to delay surgery for six months--I would have been dead. He kept saying weight was an issue. He clearly didn't know what he was doing so thank God I didn't wait to lose more weight (I lost 17 pounds before surgery but he wanted me to lose 50). THREE SURGEONS said at my weight, the risk of mortality does not go up--two here at home and the surgeon that did the procedure at Cleveland.

I don't know much about Mitral valve as much as aortic valve so I can't say if the stress test is for the same purpose. What I would say, is if you are in Pennsylvania, you are not far from Cleveland Clinic or UPenn so I would consider going there.

I am happy to chat on the phone if you like regarding more details around my experience. Email me at washingtondclawyer@yahoo.com and I will send you my cell phone.

Cleveland was great. I posted detail in another response. Email me and I will tell you my entire experience.

Sonny Abbasi  Here is one of my earlier posts I responded to--copied below--regarding Cleveland. Still dealing with some complications but working through it.

I sent ... Read more

Sonny Abbasi  Here is one of my earlier posts I responded to--copied below--regarding Cleveland. Still dealing with some complications but working through it.

I sent my paperwork to Cleveland (did aortic valve replacement two weeks to the day today--due to bicuspid aortic valve) and they assigned a doctor. I got Dr. Douglas Johnston who was outstanding. First make sure they have all your paperwork. A program administrator checks to make sure you have sent everything. A few days later a cardiac nurse will call you once the doctor has reviewed the file. I was happy with anybody I would get with Cleveland because they were the best in the world. Two local surgeons told me I didn't need to go there because I was not high risk. I said I am going there precisely because they see high risk people all the time. If you get Johnston, I wholeheartedly refer him. Adam Pick, the founder of this board, knows him and he put me in touch with him prior to me making my decision. Otherwise, you would meet the surgeon the day before the surgery. Read my review on Dr. Johnston. You have to believe in the Cleveland Clinic system, that is they are the best in the world because they have a process. I can say I was very happy thus far (two weeks afterwards). The rest remains a prologue. I was so impressed with them that when I posted my picture on Facebook, my tag for Dr. Johnston and Cleveland Clinic was #bestintheworldforareason. Meaning there is a reason they are number in Cardiac Care for 21 straight years in the US by extension, the World. Basically, my motto was if you need heart surgery you go to Cleveland; if you need special forces you get Seal Team 6. In short, this is what they do as a team--but you have to believe in their team approach i.e. each person has their part so you may not get as much face time with the surgeon. But yes, worst case you will meet them the day before surgery and best case, Adam Pick will know the surgeon.

Jacqueline Cook  Hi again Sonny. Thanks so much for taking the time to respond to my questions. In reference to the stress test: I am wondering if the cardiologist is trying ... Read more

Jacqueline Cook  Hi again Sonny. Thanks so much for taking the time to respond to my questions. In reference to the stress test: I am wondering if the cardiologist is trying to see if it produces any symptoms at all. So far I have not had symptoms to speak of. However, I don't push myself to the limits because my cardiologist in Seattle told me not to. He prescribed moderate exercise. Brisk walking is my primary form of exercise due to an ankle injury last year that prevents me from doing step aerobics and zumba. Having this chat with you has been helpful. I may call my cardiologist and converse with him about the stress test before blindly going in for that appointment. Depending on what he says, I may opt out of it. I've got to run for now (no pun intended)...I will be in touch as things progress. Thanks again!

Nancy D  I also had a TEE and then a stress test- the TEE showed the severity of the mitral valve prolapse and regurgitation; and the stress test, although it got my ... Read more

Nancy D  I also had a TEE and then a stress test- the TEE showed the severity of the mitral valve prolapse and regurgitation; and the stress test, although it got my heart rate up rather quickly and I got short of breath I had no chest pain, but that indicated probably no coronary artery disease which was then confirmed with the heart cath. Because I had no other cardiac issues I was eligible for the minimally invasive Mitral valve procedure. It is my understanding if you also need a bypass they do the full open heart sternotomy approach. Would hate to fix the valve and then during or after they decide I needed bypass as well. Thankfully for me that wasn't the case.

Jacqueline Cook  Hi Nancy. Thanks for sharing this. It makes more sense to me now. My hope is that I don't have any other issues; however, my family has a history of coronary ... Read more

Jacqueline Cook  Hi Nancy. Thanks for sharing this. It makes more sense to me now. My hope is that I don't have any other issues; however, my family has a history of coronary artery disease on my father's side. My grandmother (heart attack and quadruple by-pass) ; my father (2 quadruple by-pass surgeries); my aunt (heart attack and stints). Perhaps this prompted the new cardiologist's desire for the stress test. I guess, to me, it seems a little late in the game to be doing this. I am going to have to get the heart cath anyway. That is a far superior test. My greatest concern is that this new doctor's philosophy of care is more in line with the "watch and wait" guidelines. So I have my trusted cardiologist in Seattle (that followed me for a over a year) who has been all about "watching and waiting" until he did my last echo. Before I left, he was emphatic about moving forward so that I can get a repair. But I get the impression that this new cardiologist is not convinced that I need surgery at this time. (Maybe this is what getting a second opinion is all about...I don't know)..Like I was sharing with Sonny, I certainly would prefer to put off the surgery as long as I can; however, everything I have been reading (on this website and others) indicates that it is better to proceed with the surgery sooner than later with asymptomatic patients who have severe regurgitation. I want to make sure that I don't miss my window for repair. So, I am back to the "gut" with this new guy. Can I trust him? Do you know if there are any risks in getting a stress test before really knowing exactly how severe the regurgitation is (i.e, the TEE)? If not, perhaps I am worrying over nothing?

Sonny Abbasi  I don't know about the mitral valve but a couple of the cardiologists at Cleveland and my uncle and the guy I got the second opinion from locally here in DC ... Read more

Sonny Abbasi  I don't know about the mitral valve but a couple of the cardiologists at Cleveland and my uncle and the guy I got the second opinion from locally here in DC area all uniformly much preferred the TEE to the Stress Test. Basically, if the aortic stenosis is severe (as was the case with me), it could cause severe impact upon exertion, including passing out or worse. When I told my uncle that the surgeon said my aortic valve was worse than the tests showed, his response was thank God you didn't do the stress test.

If it was me personally, I would not do anything until I go to Cleveland and have CC do an echo and you meet with an cardiologist, especially since you are in Pennsylvania. That is what I should have done earlier except the first cardiologist's technician mis-calculated the echo on several fronts. Than based on what the Cleveland Clinic Cardiologist says, I would do whatever they suggest TEE, surgery right away, etc. Do not wait for surgery. I feel so much better (fever aside last few days) after surgery regarding difficulty breathing. You don't want to delay to the point your heart begins to get damaged.

Jacqueline Cook  Hi Sonny. Thanks for the suggestions. I wrote CC and was able to chat with a nurse there about my concerns over the stress test and TEE. Of course, she was ... Read more

Jacqueline Cook  Hi Sonny. Thanks for the suggestions. I wrote CC and was able to chat with a nurse there about my concerns over the stress test and TEE. Of course, she was not able to give me "medical advice" but she did indicate that they too do a stress test prior to surgery for people with mitral valve prolapse. That made me feel better about following through with the test here in PA. She also sent me the links to the information I need in order to proceed with making an appointment with a surgeon at CC once all the preliminary tests are complete. So, I went ahead and had the stress test on Wednesday. It seemed pretty uneventful to me. But the techs were not able to tell me much about what it did or did not reveal. They informed me that the cardiologist who would be reading my EKG would be the same one performing my TEE Wednesday of next week. I am glad that things are moving along as I do not want to wait for surgery. Thanks for engaging my posts and offering encouragement! I'll keep you posted. :-)

Nancy D  Jacqueline- I too did not want to wait for surgery, so after my testing was completed, I met with the surgeon...listened to his commentary on what he thought ... Read more

Nancy D  Jacqueline- I too did not want to wait for surgery, so after my testing was completed, I met with the surgeon...listened to his commentary on what he thought of the tests, how he approached my case, and he answered my questions and those of my husband. I knew after talking with him, that he would be my surgeon, so my last question was-- How soon can I be on your schedule? This was a Tuesday-- and he said, this isn't urgent, but if you are in a rush I could fit you in on Thursday. I was stunned as that felt too soon, and I said what day after that could you schedule me when I wouldn't be fit into your schedule, and I could be first thing in the morning. We decided on the following Wednesday, and it was set! ;-) Good luck with your testing and getting scheduled in a timely manner!

Nancy D  welcome to the site with a lot of information and a caring, sharing group of folks in various stages of being a valve patient. Read, learn and ask away- there ... Read more

Nancy D  welcome to the site with a lot of information and a caring, sharing group of folks in various stages of being a valve patient. Read, learn and ask away- there is quite a few of us Mitral valve folks on here as well! Good luck in your search, decisions and getting yourself fixed!!! Be well, and take care!

Nancy D  Fatigue was one of my symptoms, yes. I had also been bothered with a chronic bronchitis type cough for 2 years that they decided was Asthma. I took my last ... Read more

Nancy D  Fatigue was one of my symptoms, yes. I had also been bothered with a chronic bronchitis type cough for 2 years that they decided was Asthma. I took my last puff of my inhaler the morning of surgery and there is no signs of it now, 11 months post operatively! ;-)

Jacqueline Cook  Hi Nancy, Jean and Diane. Thanks so much for the responses. (Nancy) congratulations on your surgery and recovery! This website has been a God-send for me and ... Read more

Jacqueline Cook  Hi Nancy, Jean and Diane. Thanks so much for the responses. (Nancy) congratulations on your surgery and recovery! This website has been a God-send for me and I just discovered it yesterday! When I was first diagnosed, we were living in the Seattle area. My cardiologist gave me "the news" at my last appointment with him (June 3) before my husband and I moved to PA. We just arrived about 3 weeks ago. So I am here in a new place in search of a new cardiologist. I have an appointment with one Aug 3 (Monday). In response to your question, (Jean), as far as I know at this point, I am a good candidate for repair. (Diane) I have no symptoms and no significant changes in my heart with the exception of the severity of the regurgitation. My Seattle cardiologist informed me that they changed the guidelines in 2015 for asymptomatic patients like me and are recommending repair sooner than later. I was actually a bit shocked with the "it's time" news as he originally seemed to think that I might be able to go several years before having to have the surgery. But no one can really predict how slowly or quickly things will change. I guess after hearing "see you in 6 months" after a few visits I thought I was in the clear for a while. Thanks again for your comments, encouragement, and questions. I have been feeling really anxious about everything...I am so grateful for the support!

Nancy D  Anxious, stunned, confused, and afraid come to mind with regard to how I felt in the whirlwind of tests, new doctors and the "it's time" decision when I was ... Read more

Nancy D  Anxious, stunned, confused, and afraid come to mind with regard to how I felt in the whirlwind of tests, new doctors and the "it's time" decision when I was always told 'it will never bother you" my whole life! Once I faced the fact that my valve needed the attention prescribed or I could face problems up to and including sudden death, the decision was a bit easier, the waiting was tough- and I had a very short wait compared to many on this site! As the day approached, knowing I had done my research both here and in assembling my team who would do their work on me, I had this surreal sense of calm, due in great part to my praying and those praying for me. Once surgery was done, I was at least working hard to progress in my second chance at a full life. My progress was somewhat bumpy, but I tried to do all I could to get stronger and get well. Some days harder than others, but learning to listen to the signals my body was telling me I walked and did deep breathing each day, and pushed myself when I could and rested when I couldn't. It is a day to day journey, but 11 months have passed and I am doing quite well!! Wishing you and the others smooth sailing through this journey that none of us signed up for, but find ourselves navigating anyway!!

Steven A Husted  yes what nancy said it is a journey we wish we did not have to take but hear we are on this journey and with gods help we will make it thru and extend this ... Read more

Steven A Husted  yes what nancy said it is a journey we wish we did not have to take but hear we are on this journey and with gods help we will make it thru and extend this life of ours i know you may have heard this before but it was really not as bad as i thought it was going to be in the beginning i was scared to death but i made it and you will to your heart brother steve (popeye)

Jean Raber  Doc said I was a good candidate for repair, too. I really balked about surgery (took care of my mom after her AVR and swore I'd never put myself through that--but ... Read more

Jean Raber  Doc said I was a good candidate for repair, too. I really balked about surgery (took care of my mom after her AVR and swore I'd never put myself through that--but things change). He said he'd do another eval in September, but that the better shape I was in when I had surgery, the better I would do afterwards. No heart damage, functioning at 65 percent, symptoms are relatively mild, so nothing immediately life-threatening.

Tim Goff  Jacqueline- I had both a mitral repair and a MAZE procedure 4 months ago and am doing well. If I can be of assistance with information etc feel free to let ... Read more

Tim Goff  Jacqueline- I had both a mitral repair and a MAZE procedure 4 months ago and am doing well. If I can be of assistance with information etc feel free to let me know. It is a process filled with anxiety and questions on the front side, but all about perseverance on the other side.

Jacqueline Cook  Hi Tim--thanks for the support! I have my first appointment with a new cardiologist here in PA tomorrow. It will be interesting to hear what he has to say about ... Read more

Jacqueline Cook  Hi Tim--thanks for the support! I have my first appointment with a new cardiologist here in PA tomorrow. It will be interesting to hear what he has to say about my condition. I spent the last year or so under the care of the same cardiologist in Seattle. Little hard to switch cardiologists right after being told that I need to have surgery. I am trying my best not to stress too much over it. Such is the life of a military spouse I suppose! I have been doing my home work concerning surgeons who specialize in valve repair. There are actually three that are relatively close by and in my insurance network (Cleveland Clinic, UPMC Presbyterian in Pittsburgh, and Johns Hopkins in Baltimore). Adam's book and this community have been so helpful in curbing some of my anxiety over this process. Some days are better than others though. What kind of surgery did you have? Open heart or minimally invasive? I am unfamiliar with the MAZE procedure. Can you share more about it?

Tim Goff  Hi Jacqueline- Sounds like you have some great clinics near by. I was fortunate to have MA General close by and they couldn't have been better. Though I was ... Read more

Tim Goff  Hi Jacqueline- Sounds like you have some great clinics near by. I was fortunate to have MA General close by and they couldn't have been better. Though I was looking for an experienced surgeon I wasn't necessarily looking for one that did 5-10 ops per week. My questions to him had more to do with the results of his work as opposed to the volume and my comfort level with him was important as well. (surgeons should also be physicians) Having a leaky valve caused my left atrium to swell to the point where it disrupted the electrical pathways for normal sinus rhythm (AFIB) thus a MAZE procedure was required in addition to the valve repair. The MAZE entails a cauterization of places in and around the heart to prevent those bad signals and to channel the signals properly for sinus rhythm. I chose a sternotomy for 2 reasons: Bluntly said it is easier to work on the engine with the hood off! The MAZE results are far better with full access so a sternotomy was the choice there and for the valve repair I felt it advantageous that the surgeon had better access with the sternotomy. In the event of a problem I was already opened up. Better access for surgical results were more important than cosmetic results for me. Women and men surely differ on this.
Frankly the pain of recovery was far less than my rotator cuff surgery. Sure it hurts a bit for a week or two, but really not bad at all. Heart rates & rhythms were a much bigger concern than the sternum. I was a very active 52 year old male before and recovered very quickly and am back in the pool and gym since the 14 week mark.
Good luck in your search and interviews of surgeons and facilities and please don't hesitate to reach out as there is always someone who has walked the same path!
Best Regards,
Tim

Jacqueline Cook  Hi Tim. Thanks for sharing about the MAZE procedure and your thought process in finding the right surgeon. I too am all about results. I am fine with the sternotomy ... Read more

Jacqueline Cook  Hi Tim. Thanks for sharing about the MAZE procedure and your thought process in finding the right surgeon. I too am all about results. I am fine with the sternotomy if that is the route I need to go to achieve the best repair. But it has taken me a year of processing the fact that I need heart surgery to arrive at this place! I am fortunate to have several friends in the medical field who have encouraged me to keep an open mind when it comes to open heart vs minimally invasive surgery. Ivan (a retired general surgeon) would absolutely agree with you concerning lifting the hood to get at the engine! He told me..."the surgeon needs to get his hands on your heart!" Thanks so much for taking the time to share your experience with me and for the encouragement! I really appreciate it :-) I'll keep you posted.