Lynne's Journal

Since meeting with the surgeon on July 16, 2025 she wanted me to increase my weight and have managed to reach 105. This past long weekend I noticed as I was doing daily activities and cleaning up the house etc. I was having far more chest tightness and now shortness of breath which I hadn’t had. Usually it was on exertion but now I’ve had some moments at night trying to fall asleep that I was getting chest tightness. So things are becoming more symptomatic. My walking has slowed to a crawl and mostly up and down my driveway. I’m still able to do my exercises they gave me but noticed a change there too. So last night I sent an email off to my surgeon letting her known that things are changing. So we’ll see what happens next. 

One thing she mentioned was a root enlargement to accommodate a big valve for future valve in valve TAVR. I’m sure someone in our heart community had this done. What did they do for you? Was there a special name given to the procedure? I’m just curious and will ask her again the details. Sometimes you need to digest and reread what you first heard which is what I’ve been doing. 

That’s the update for the moment. 

So some of my questions to our Heart Value community is this. With the sternum wires have others been told that they may have to come out in the future because you are petite and not much fat/muscle that it will probably irritate the skin? 
How did you manage to sleep- in your own bed or a recliner?
When I look at different videos they all seem to show your average person size which I’m not (4’11”).  My bed currently comes up to the top of the hip bone so my feet won’t touch the floor when I sit on the side of the bed. Have others had this and would a raised platform help? Thanks

Coming up August 11, 2025 should have been a special day for my 10 biscupid valve surgery done as a mini thoracotomy but it won’t be. My bioprosthetic aorta valve has failed. I’m current on the wait list again to get it replaced as a redo aorta surgery and this time it will have to be the dreaded full sternotomy and not the mini. Because of the Perceval stentless valve that was used the first which is smushed into the heart muscle it needed to be explanted and then the aorta and heart area reconstructed and the new valve installed. It is a long 6 1/2 hours with lots of blood so they will probably have a transfusion or 2. They do recycle your own blood as well. This doctor is Head of Cardiac Surgery at Toronto General Hospital named Dr. Maral Ouzounian. She has an excellent reputation as a cardiac surgeon and does a lot with connective tissue issues involving biscupid valve patients because they can have these aneurysms etc. She didn’t recommend doing it as a mini because it is too complex as a surgery to do safely in a small 4cm hole. Too many extra complications could arise. As to the date that isn’t known yet because I’m dealing with another health issue the past 2 years of blood sugar and weight loss that I can’t regain unless I eat junk food, something I don’t eat. I’m not even a pasta, bread or potato person, 🤪🤪

The Valve is bad enough that I could have surgery tomorrow but I need to put on 17 lbs. I started out in 2023 without knowing I high blood sugar problems but I also was sick with RSV at the time. What I know now and not then was that you shouldn’t test glucose levels when you are sick, they will be elevated. They were, and one week later for the OTTG test they were still elevated as I was still at the end of RSV? So the FD said to eat low carbs and exercise and we’ll check back in a month. I reminded him of joint problems and will do my best. I’m petite at under five feet and never weighed more than 120 lbs. In 2023 I was 117 heavier than I like and was going to take off 5 lbs. 
So I picked a number of 30 not knowing because I never had to know and lost a lot of weight too quickly and was making myself ill at the same time. Of course, the FD was away on March break for 2 weeks and I ended up calling diabetes Canada and asked for help. They sent me to the pharmacy and gave me a glucose monitor to use over the next five then see the FD when he gets back. 
So whatever happened that day for low carbs switched something off and no matter what I did the weight would not return. So up until July 16 my lowest weight was 93lbs. of muscle and skin. HA! 

So the surgeon said we need you to get to 110lbs. because you will loose weight during surgery and your too thin. She said the arteries have no CAD or arteriosclerosis it is only the valve damaged, so go and pig out on junk food, steak and potatoes , fats, ice cream, chips, hamburger, all the bad things we tell not to eat you need to eat. So, I literally took it to heart and have been having a junk fest for weeks now. My poor body doesn’t know what hit it. You fell so bloated because they want to eat just about 24/7. So I’ve gone from 93 to 100lbs, 10 more to go before Oct. This is when they are planning it, maybe end of September. 

I need to speak with them and see where we are going next here if I get there faster that Oct. I’ll keep you posted and I have questions for the community but need to make my list first. Stay turned community of lovely Heart People.!❤️❤️❤️❤️❤️❤️❤️

Thank you Adam. Happy 15th Anniversary! You provided the space to find reliable heart information from the people that have experienced it. This has always been helpful for me. 👏👏👏🤗🥂

Didn’t get a chance to post on the actual day of surgery which was Aug 11, 2015. So 4 year anniversary for me. Heart wise I feel ok. Still have pectoral muscle cramping from the mini thoracotomy and I guess I always will now. It is less but all depends on what I’m doing. Found out by chance from a neck strain and headaches that I have had a stroke sometime between 2015 and 2018. Had a few CT scans showing that I have 2 discs in the neck that are degenerating which was exasperated from the the neck strain. The CT scan showed something so they repeated in 1 Year and still showing something so they did the MRI May 3rd and they confirmed it was a corona radiata infarct or a silent stroke. As I write this the news on TV was talking about silent stokes. I’ll have to go back a re listen to it. Have a CT angiogram next to see what is blocked or damage. No symptoms that I’m aware of. So we’ll see where this goes. You know you just start getting back to feeling better then something else starts. Getting old sucks!

Didn’t get a chance to post on the actual day of surgery which was Aug 11, 2015. So 4 year anniversary for me. Heart wise I feel ok. Still have pectoral muscle cramping from the mini thoracotomy and I guess I always will now. It is less but all depends on what I’m doing. Found out by chance from a neck strain and headaches that I have had a stroke sometime between 2015 and 2018. Had a few CT scans showing that I have 2 discs in the neck that are degenerating which was exasperated from the the neck strain. The CT scan showed something so they repeated in 1 Year and still showing something so they did the MRI May 3rd and they confirmed it was a corona radiata infarct or a silent stroke. As I write this the news on TV was talking about silent stokes. I’ll have to go back a re listen to it. Have a CT angiogram next to see what is blocked or damage. No symptoms that I’m aware of. So we’ll see where this goes. You know you just start getting back to feeling better then something else starts. Getting old sucks!

Well it has been 8 months now since I had to have my lung hernia repaired. I can say I'm not thrilled with the progress or lack there of. I have been having almost daily muscles spasms or severe cramping of the pectoral muscle on the right side. The area of the incision is basically skin and bone with the muscle split in a V on either side. The muscle spasms below and above the incision. It can be very severe at times and even brings tears to your eyes if cramping badly. Family doctor hasn't any idea want to do so I'll have to go back or at least let the surgeon know what's happening. I have been giving it time to heal and just doing daily living activities. I was planning on taking the heart rehab program again but the muscle is not able to stand up to even light weights never mind the full program. Very discouraging.

Hi All, Received some disappointing news yesterday. I had a right mini-thoracotomy done Aug 15, 2015. On Aug 30, 2016 I noticed as I was looking in a mirror and coughed at the same time a huge bulge come out between the rib bones and it was above the original incision. Of course, it's our Labour Day weekend and all my doctors were away. Anyway, I connected with my cardiologist and saw him on Tuesday Sep 13th. I had described in detail to his secretary what was happening. The Dr. had a pretty good idea what had happened. He said to me that somehow the internal stitches have giving way and created a hernia between the two ribs and when I coughed it pushed a bit of the lung tissue out. he said it is very,very, but does happen and is familiar with it. I don't have really any pain which I'm thankful for but do find I'm achy at the end of the day from talking, coughing, laughing etc. Anything that makes the lung expand outward. He is a bit concerned with adhesions like I am and hope none are forming or have formed. I hope to be in within the next 2 months. Till then I'll place my hand over the area with pressure to help keep it inside. Never a dull moment with me. HA!!!

Just over four months now from my mini-thoracotomy for a aortic valve replacement from Aug 11th. Feeling great. Started my cardiac rehab on Dec 2 for a 6 month course. Like Gary Stripling, I'm having this pulsatile tinnitus and hear the heart beating with a little ring at the end. It can be annoying, but it's not all the time. As I type this it's doing it but only the last hour or so. Who knows.

If anyone had a mini-thoracotomy done for their bicuspid aorta valve did you have right thigh numbness and localized swelling in the area from the by-pass tubing? If so, how long before it goes away or does it not go away completely? I have been having this since day 1 with very little change in the feeling. The thigh area bothers me more than the heart incision does. Lynne

Finally had my severe bicuspid aorta valve replaced on Aug 11, 2015 in London, Ontario,Canada (University of Western Ontario) It appears from the group of people being done that I later met in the halls walking all had the traditional open heart surgery. I was the only one that mini thoracotomy AVR done, also using a paravertebral nerve block. Even though it took a bit longer doing the nerve block I would use it again if offered. The worst part for me the chest tube. I'm small woman and really felt the tube the till they took it out. That created a muscle spasm which still has not gone away yet. I have been having a bit of fluid retention 1-2 lbs. when I last weighed. I noticed today all the aches and pains of the surgery are making themselves known. Each day should get better and the muscle release soon. I'm too sore to be massaged just yet, but soon. Happy to say I Survived!!

Disappointing news. They have postponed the surgery for possibly the following week. I will know more on July 23rd if it will be the week of July 27th and what day. It has been a very trying experience with so many cancellations that is no wonder I haven't become one of the emergencies or something else. Thanks for the wishes regardless, they help encourage me on. Lynne

Hi All, Thanks to everyone for the well wishes. It really does make a difference to the emotions. The Hospital called as a heads up yesterday at 3:30 that an emergency had come in and they were waiting on a decision from the family. The hospital called this morning at 10:45 to cancel. the next date tossed out might be July 17th. This really has been a nightmare with 3 cancellations now. Supposedly, with 3 bumps the next one is for sure (nothing is for sure with hospitals) so I don't know if they will bump someone else to put me in earlier. I did mention that i'm having a bit more increase in symptoms now and didn't mention before because I expected I would be in this time around. I'm trying to be strong but it sure knocks the wind out of your sails. Anyways, that's my update. Lynne

I finally got a date for surgery on June 18th. I was cancelled for May 20th so I hope this one stays. It has been a very long wait time for me with added stress from the wait and the cancellations. I'm having it done in London, Ontario which is out of town for us. I had made reservations to stay at Amica for post-op surgery and they cancelled on me 2 days ago. Now, I had to scramble to find another place to stay when I'm discharged. I have to stay in London for a few days before coming home to make sure the heart is ok. Finally arranged everything today and I'm mentally worn out never mind physically worn out too. I was planning on taking it easy this week but it sure didn't work out that way, so hopefully this weekend I can just relax!

Had my pre-op on Dec 29th. Because of all the confusion dealing with Fibromyalgia flares after surgery, (since surgery was my trigger) I was not convinced that the surgeon really understood where I was coming from. He was meeting with another patient near pre-op area and was asked to see me before he went to surgery. I think he was not in the greatest of moods with me about the FM but if I don't speak up now no one else will. Anyway, I was asking him if it is possible for him to do the surgery once time and not have to worry about replacing the valve for at least 10-15 years. By then there will probably be another way to do replace the valve. I mentioned that I had seen it done as a minimally invasive thoracotomy surgery by cutting 2 ribs and removing the aorta and valve or as a mini-sternotomy. He was a bit snarky and said that in Canada we call it a hemisternotomy and if thats what you want you could have done it in Toronto. (I live in Toronto and I'm going to London, Ont because of his experience in minimally invasive surgery) I was taken back by this and I'm usually quick with a response, but not this time.He also said we don't do that kind of surgery in Canada yet. He said the diameter in normal range of 36mm (last Nov 28th he said 34.29mm looking at the CT scan and his fellow said 40mm) So somewhere between 34.29 to 40mm is my range - normal/ above normal. He mentioned a word "remotely" in saying that the aorta is within normal range and that it will remotely if at all become involved and to not worry about it. He feels the replacement will reduce the wall stress and lessens the aorta problems. Of course he has no crystal ball nor do I in regards to either FM or the aorta. So, after much pros and cons with my sister over the day I finally decided to have the mini-thoracotomy to replace the BAV. Now, I still have some unanswered questions which I'll ask the RN Pre-op nurse assigned to me. As to when this will be done, I play the waiting game, with one twist thrown in - my surgeon has his holidays for 3 weeks, the last 2 of Feb and 1st week of March, then we have reading week, March break. So about 5 weeks of no surgery time for those ahead of me as well. A slim window of the 1st 2 weeks of Feb. Who Knows. I wait.

Had the tests and met the surgeon on Nov 26th. The CT scan unfortunately showed that the aorta root is now involved. I had asked at every echo if the aorta was ever enlarged or involved and they always said no, so I was bit overwhelmed when the doctor said it is starting to enlarge. The bicuspid aorta valve needs replacement very soon but the aorta is not yet at the size they start removing it. So, all my planning to have no open heart surgery have gone out the window. They will follow me very closely till it reaches their measurements then book the surgery. He said they don't know how many years it may take to enlarge 2,5 ,10 yrs and sometimes the aorta stabilizes and may not be replaced. So the plan is to replace the bad valve 1st through a mini thoracotomy sometime in Jan or Feb 2015 then wait and watch till it's time for the second surgery. I have my pre-op Dec 29th. I'm still getting my head around this new unexpected news then I'll try to put it out of my mind till it's time to replace it.

Writing my lists of questions for the BIG appointment on Nov 26th. I have a CT scan, another echo and the meet the surgeon all on the same day as I'm going to London, Ont. for my surgery. I think that's the plan so far. With all the bad weather and traffic I'll leaving Toronto early and staying over night. Too far to drive in the morning for a 7:40 appointment. I don't want to get up at 4 or 5 am to drive so early, I'd rather arrive the day before and scout things out.

Hey Everyone, Had a trying time with my angiogram with bleeding 3 times the afternoon and night. I was a little nervous about sleeping so I used a tensor bandage loose enough to hold some pressure pads in place. Worked well. The bandage stuck to the the cut and of course can off with the bandage, more bleeding but just the skin edges. I used some steri-strips to close the cut and keeps the edges tight together to heal. Bruising was terrible. I had a 6" X 5" bruise that even went along the crease of the leg. After enquiries about what others have experienced, most had no problems but some worse than me. So I guess it all depends on where and with whom it is done by. Too bad they don't have a rating system in place so you can see who has complications. The important thing is that I have no blockages or enlarged aorta just the BAV. So the next step as you all know is waiting for the surgery time but 1st comes the visit with the surgery. I called today but haven't heard back from them. And to you, Robert, thanks for enquiring after me. I'm still hanging in. I'm trying to keep my daily living as status quo because I would like to keep by body as fit as possible without any heart overload. How are you doing? Lynne

Have a question for the Heart Valve family. Does anyone have fibromyalgia with their biscuspid aorta valve? What if any, problems have you encounter with surgery or recovery over the many months?

I received the call to book my angiogram and it will be next Wed. Sept 24, 2014. I didn't realize the angiogram would be a whole day affair and the recovery time is 4-5 hours with the actual procedure is only 45 minutes long. I have to arrive at 6:15AM. What a time! Not use to such an early hour anymore. Things are moving along.

I have started to notice a change in the beating of my heart now and sometimes a shortness of breath going up inclines and stairs to second levels in August. Called the Cardiologist and of course whenever you need them they're away on holidays. Anyways, I saw her on Sept 9th and she has started the referral to my surgeon. Because of my fibromyalgia we have chosen to do a minimally invasive robotic surgery to lessen the pain from open chest surgery. I'm hoping that this works and I don't have a severe relapse with the FM. So, now we play a bit of a waiting game with our health care system in Canada. I'm sort of calm at the moment and want it over with but at the same time I know I will get more anxious as time gets closer to the date, which hasn't been set yet. 1st is the angiogram, then to meet and go over what he'll be doing and how, then setting the surgery date. Time frame I don't know at the moment,but if I get worse they move you along quicker. So for now I wait.

Still playing the waiting game. I see the cardiologist in May for another 6 month followup. I will be having a repeat modified stress test and echo. Still not showing any classic symptoms they are waiting for but after reading about the new guidelines on this site I will be asking my doctor about them. Not sure how close Canada follows the same guidelines. If they do, then I may be in the category to consider surgery.

Saw cardiologist yesterday Oct 1 and since I still don\'t have the classic symptoms showing, she would like to do a modified stress test to see where the heart is at. She feels the arteries are clear but will think about an angiogram to be sure then make a referral to speak with the surgery and get into the system. So the wait continues for me.

Saw the cardiologist on March 20th and read a copy of my report and tests. It appears that there is mild left ventricular hypertrophy which is new since the last check-up In Sept.2012. I guess on the next visit if there is further change then the valve will need to be seriously considered. I still have no symptoms showing.

I got mixed up with my appointment day and saw the cardiologist today not tomorrow. They did a another echo and the change in the gradient is 81 from 80. This is the 1st time in 13 years that the gradient has not moved about 6 points. The Dr. feels even though the aortic diameter is now .5 from.7 she feels it still is about the same as 6 months ago when you consider all the test results. But the palpitations she wants to check out further with the holter monitor for 48 hours. She also gave me a different Doctors name in London Ontario that does very minimal invasive surgery with much shorter recovery time and length of stay in hospital. He does a very small incision sideways over the centre/right chest area. Sounds interesting to find out more. I really was expecting worse news so this is good for now.

I have been stable since I found out 1999 that I had a bicuspid aorta valve with severe aortic stenosis. As far as I know I have no other complications with the aorta artery. I have palpitations that come and go just as quickly. Get them for a few days every few months or so then nothing for months on end. Now that I might be starting to have some slight symptoms showing up the reality is hitting home with worry and on/off crying spells with fear and anxiety, so much so I had severe muscle spasms in my neck and shoulders for the past month. Even with massage they aren\'t going away, only easing up but still there. My Mom past away 12 hours after heart surgery April 2, 1999 that\'s when I was diagosed after severe palpitations. My fear is dying like my Mom as well as starting up my severe fibromyalgia. My FM started from a simple knee sugery in 2003 and has been fairly stable since 2007. So I\'m scared this surgery will start the severe pain of the FM all over again. But, there is nothing I can do about it except hope and pray it won\'t flare up. Not sure if anyone else has FM and BAV. I see the cardiologist March 20, 2013 and we\'ll see what she has to say if it\'s time or not. On one had I want it done and on the other hand I\'m pertrified! Lynne