Well I'm 6 months since my 2nd surgery and I would say that I am as good as I was before.....regarding my activities and better than before regarding my heart health. Amazing what a good heart will do for the soul!
I've been back to work for 2 months and have done 2 business trips so things have returned back to usual on that front. Taking a full 4 months before returning to work allowed me to return with full energy. I could have gone back after 3 but I'm certain I would've been pushing myself and that's not wise. Exercise has been great, I go to the gym to lift weights 4 or 5 days a week, I ride my bike to work and also mountain bike on weekends. My rides are back to normal, 1.5 - 3 hours and no issues with fitness. I'm not as fast as I was when I was in my prime but I can still climb the big hills with no issues. Getting off the beta blocker will be nice when ever that happens. Likely not for another year I'm told. The beta blocker limits my heart rate so that makes intense physical exercise a little difficult. I don't swim as much now that I'm back riding to work but that's ok as long as I get my daily cardio exercise.
Life on Warfarin has been pretty good. I'm well into my post 3 month phase so my INR range is now 2.0-3.0 which is better than when it was 2.5 - 3.5 as I was getting some pretty good bruises when it was above 3.0. It took a while for it to stabilize with my dose and now I'm at a consistent 5.5mg daily. I eat greens every day for dinner; either, kale, asparagus, broccoli, or Brussels sprout. I still test my INR weekly as I like to keep on top of it since I'm so physically active. If it jumps high I know not to go mountain biking until I get it back down. I also still home test if I can't get to the lab so that's been a nice option and its also been helpful for when I travel.
Best wishes to all of those about to go through this or are on the other side recovering.
Here's a funny video of me doing a feat of strength to celebrate my 6 months!
1) Waiting for surgery is worse than recovering from surgery
2) The key to getting appointments with doctors is to self advocate
3) A Starbucks gift card helps speed up item #2. Receptionists need perks too :-)
4) Driving to the hospital the day of surgery is weird
5) Once you get rolled into the OR, it's all out of your hands.....so RELAX
6) Getting the breathing tube out is the best feeling, spending 2 days with the breathing tube in is not a good feeling. Trying to have a conversation with a breathing tube in is impossible. Trying to write messages with a breathing tube in is frustrating - especially when the pen dries up!
7) Being on lots of narcotics is a very interesting experience. Seeing visions and images when you close your eyes is funny yet annoying. Go with the flow, enjoy the movie being played on the inside of your eye lids.
8) Being nauseous sucks, it will get better
9) Good nurses and doctors are awesome, you can tell good ones within seconds of meeting them.
10) Sleeping in a hospital requires; sleeping pills, ear plugs and good luck. In other words: forget about it.
11) Walking at the hospital is boring but is necessary, the more you walk the better. Get out of bed
12) Use the breathing Spirometer often. 'nuff said.
13) Removing drainage tubes hurts. Suck it up it doesn't take long.
14) Having a drainage tube incision open up, bleeds a lot. Don't ask how I know that, just trust me.
15) Flip flops or waterproof shoes at the hospital are the best. You can use them in the shower.
16) Going home after surgery will feel like uncharted territory, you will feel weak, fragile and vulnerable to germs. Don't worry, you're stronger than you feel.
17) Sneezing is ridiculous, avoid it at all costs.
18) Try to do normal things as soon as you can once home, the more you feel you can't do something the more limited you will become (within reason). Just because you can't lift all the laundry at once doesn't mean you can't make 10 trips from the laundry basket to the washing machine.
19) Walk, walk, walk, walk, walk, walk, walk..........
20) Keep a daily calendar/journal of your weight, sleep, activities, meds and how you're feeling. This will be invaluable when reviewing how things are going with your doctor. If things have changed you will be able to provide exact details. It also helps you see improvements and set goals.
21) Things will hurt, you will be sore, get used to it.
22) Friends and family are the best!!!
23) Blood thinners aren't that bad, don't let the "fear" of blood thinners determine which valve to get. Base your decision on the facts of how living on blood thinners will impact you.
24) A home INR tester is the most useful tool I have, I couldn't imagine being on warfarin without one
25) Update your first aid kits to include clotting bandages and Woundseal
26) Spend time with family - when else will you get 3 months off work?
27) Life is unpredictable, go with the flow and enjoy every day
28) You can't worry about things beyond your control, so relax. Things have a way of working out.
Please feel free to add to the list, I would love to read others thoughts
Hello everyone, it's been a while since I've posted and for those who don't know my story I had 3 OHS since December. You can read details in my journals.
I'm at week 5 of my recovery and I am really happy with the way things are going. I honestly found it hard to visit this site after getting home from the hospital as it kept reminding me of my situation when all I wanted to think about was getting better. I found this site and the people on it absolutely invaluable prior to my first surgery and during my recovery. Its funny but after 3 surgeries it started to feel "old hat" and I found myself less reliant on reading about recovery as it was all so fresh in my mind.
My schedule has been much the same as before; lots of walking, working up to as fast a pace as possible and now I'm starting to lightly jog for 1/2 my walks. I think getting back on the bike trainer will be next as I feel about ready for it.
I ended up with an On-X mechanical valve and it's still ticking away :-) I actually don't hear it unless I'm in the shower or in bed so I don't find it bothersome at all. The warfarin treatment has been going well and it seems to be under control.
I'm excited to have a mechanical valve; being on this side of recovery and feeling better - life is good.
I'll make an effort to get back on the site a little more and hopefully I can answer some questions that members might have - time to give back :-)
I'm going to make another post of the "things I've learned" which might be of help to some.
Sorry I haven't posted an update earlier, but it has been a crazy few days! I will just copy and past the daily updates I have been sending out to our family.
Day of Surgery (Wed, Feb 4)
Jason just came out of surgery, and everything went well. They replaced his aortic valve with a mechanical valve, which was the plan going in. He is headed to the ICU and once he gets settled there, I will get a chance to see him.
The surgeon said that what had happened to his repair is something that he has never seen or read about before. When repairing the valve, they put in a suture below the valve to make the opening smaller, this suture had pulled through the "good" leaf of his valve, creating a hole. This explains why his symptoms had become so bad prior to this surgery.
Post Op Day 1 (Thurs, Feb 5)
Wow, not sure where to start, it has been a very long rough 24 hours. Luckily things are looking up!
After surgery yesterday, Jason was having some bleeding that they were having a hard time controlling. He was receiving lots of blood products but it was still not stopping the bleeding. He seemed to stabilize over night but shortly after I came into see him this morning, he drained a large amount of blood into his chest tubes. The surgeon was called back and a decision was made to go back in and open him up in order to see if there was a source for the bleeding.
He was wheeled off to the OR around 11am. They were unable to find a source for the bleed, but suctioned 1litre of blood and clots from his chest cavity. He received more blood products, and seemed to stabilize over the course of the afternoon. They weaned him off sedation and woke him up around 5 pm, and extubated him around 7:15 tonight. He was still fairly drowsy, but cracking jokes with us. He was pretty happy to get that breathing tube out. Hoping he gets some sleep tonight and that he remains stable overnight!
Post Op day 2 (Friday, Feb 6)
Just a quick note to say Jason had a good day today. His bloodwork is looking good and he has not needed any more blood products. He sat up in a chair at his bedside 3 times today for several hours each time. Then they got him up walking this evening. His chest tubes are still in, but the drainage from them has been minimal, they are hoping to have those pulled out by tomorrow morning. He is still quite drowsy at times due to the pain medication, but he has not been having any nausea this time around. They are hoping to have him up on the cardiac ward tomorrow.
Post Op Day 3 (Sat, Feb 7)
Jason is doing really well. They moved him up to the ward this evening, and he is actually in the exact same room as last time!
He still has his chest tubes in - as they still want to keep an eye on the drainage. He finds them the most bothersome as they are quite painful. Hopefully they will be out tomorrow. He was up walking around today and spent a good portion of the day sitting up in a chair.
Looking forward to getting Jason home, so we can being the road to recovery.......again!!!
Merryn (Jason's Wife)
I have an early appointment for Wednesday morning with an 8:00am surgery. Hopefully this time I'll get in on time as last time I had to wait until 3:00pm due to two earlier emergencies. No worries.
I'm really looking forward to getting this behind me (again). I consider the first surgery a dry run, it certainly was easier for my wife and I to prepare the house and get everything ready this time. Thankfully my support team was ready to jump into action again; I'm really lucky to have such great help.
I've asked my wife to update my journal and keep you all in the loop.
Best wishes for all of the others having surgery tomorrow as well.
Is anyone using the Coagucheck machine to home test your INR?
I ordered one and my pharmacist and I couldn't get it to work. It seemed like the test strips were defective as the blood wouldn't stick to the strip. The blood drop is supposed to be drawn into the strip by capillary action but we did 7 tests on me and 1 test on him and none worked.
He was going to check with the sales rep, but curious if anyone has had this issue? any solutions?
I saw the surgeon today and I'm booked for my aortic valve replacement for next Wednesday. Exactly 2 months after the repair was done.
It will be interesting to hear more after the surgery regarding the failure, but really it doesn't matter. I just need to get it resolved and move on. I can't wait to feel what it's like to have "normal" blood pressure and circulation!
I'm going to be getting an On-X mechanical valve as I don't want to go through this again if I can help it. A tissue valve at my age means a few more operations and I think 2 is more than enough for me. Besides, carbon fiber is pretty cool. LOL.
I got the dreaded phone call from my cardiologist; "he needs to see you as soon as possible". Can't be good news when you get that phone call, and of course it wasn't.
My "repaired" aortic valve has failed and I'm going back in for surgery. It only lasted 2 weeks - honestly I was hoping for much longer than that!
The ball is rolling really fast this time, my cardiologist is in a hurry to get this done. Looks like a mechanical valve is in my near future. Not the news my wife and I were hoping for on our 15th anniversary :-)
Well it appears like we've all emerged from this fog and our house is back healthy again (knock on some wood). I feel like I'm nearly healed except I still have a long ways to go regarding getting my fitness back to where it should be. My walks have been all I've managed to do recently since I haven't had the energy to ride my bike on the trainer.
This flu/cold really took it's toll and I can feel my lungs and heart need to recover some more before I can push it again. I'll give it another week and re-assess.
I had an echo done last Friday to investigate my murmur - the technologists doing the test was tight lipped and wouldn't say anything about the results so I'll have to wait until my doctor appointment this Friday to find out the details. I also have an appointment with a new cardiologist in early February so I'm looking forward to that. Funny how these are the things I look forward to now. LOL.
Not too much else new at this point. I had a few meetings for work which reminded me that I'm enjoying my time away. Not that I don't like work, but I find it nice to not think about work details.
I'll update this weekend after I find out my echo report.
I would say that this week has been a plateau in my recovery. This cold/flu that has taken grip on our household has really stagnated my progress. It seems like the kids have come out the other side but I still have a pretty bad cough and my wife is up and down (this is day 14). I've gone from being cared for to being the caretaker. Glad I am well enough to give back a little for all the work she's done in the past weeks.
I started driving last week so that's been good. Getting around to my appointments and just running errands is a nice change of pace.
I have been walking but just maintaining what I was doing before, nothing new. I saw the electrophysiologist yesterday and that was good. The holter monitor report came back good and he isn't concerned about my palpitations. I had .2% of my beets being palpitations and he said the number could've been as high as 5% and he wouldn't be concerned. Good news.
I have been referred to a different cardiologist who specializes in echocardiology and valve concerns. I still have a murmur after the repair so they want to look into it a little more and see where its at. Those appointments are in the next few weeks so I'll update once I've got more news.
Essentially I'm in a holding pattern until I can shake this cough, then I hope to be back on track with my recovery.
All the best!
I took over the guest room/sewing room to set up my trainer. Such a kind wife :-)
Week 5 post-op
Journal posted on January 7, 2015
This week was full of firsts.....I felt like Chuck Yeager as I did my first jog. I decided to break my own sound barrier and see what would happen if I increased my heart rate beyond 120. Wasn't sure what my body was going to do? I had decided that I was going to walk 1km, and jog 500m, as I approached the 1km mark it was like "mission control, light the rockets".......it worked! I was able to push my heart rate up to 137 and do my run without issues; felt great. The next day I did another and got up to 157. The next day the cold I had been fighting got worse so I had to back it off for a few days, but I was happy I had managed to get to the next level.
The cold proved to be the worst I've had in a long time. Brutal flemmy cough - it certainly gave my chest a workout. I am so glad this happened at week 5, not at week 2. My body would've struggled to fight it off. I also sneezed for the first time, I had been trying frantically to fight them off giving my wife a lot of good laughs as I would spaztically sniffle / twitch and tickle my nose to prevent myself from sneezing. This cold proved to be too much to prevent all of them and it really wasn't that bad. I had to press really hard on my chest but there wasn't any pain. I still don't want to sneeze anymore though.
I also got my bike set up this week and I have started to do cycling workouts again. This is great as being on the bike is my comfort zone. I even registered for a mountain bike race in June so I have something to train for.
My shoulders / neck are still sore, I have physio booked for tomorrow so I'm hopefully I can start to get that under control. I would like to start swimming again and I feel like I'm still a little ways away from that.
Today I had my heart rehab consultation and stress test. The doctor was pretty impressed with all of the data that I had from tracking my walks and my heart rate data over the past weeks. The stress test was good and she gave me heart rate zones to focus on. For the next week I need to do a 10min warmup, 30 min @ 128 - 132 heart rate, 10 min cool down. Once I feel I have that down solid I can move up to 30 min @ 132 - 138 heart rate. I feel good about that and it will give me a solid workout on the bike. It was funny because they didn't think that I needed to take the rehab program based on my training background and what I had been doing so far - instead they asked if I would come teach for them! LOL. I said I'll see how my rehab goes and stay in touch. They were really nice and very helpful.
I still feel like I don't have my stamina back yet, I walked up the steps to the 5th floor of a medical building and I felt OK but I could feel that my muscles were getting tired by the top. Heart rate was not too high (119) but it was a good effort. During the day I have been taking a nap in the afternoon and it has helped replenish my energy. I also found that I need to keep snacking and eating, if I don't I also crash pretty quick.
This week is all about getting the house in order for the new year. Cleaning out closets, purging old items for donation and starting fresh. We got our dog back from my sister-in-law which is nice, I have a companion to walk with again. Kids and wife have been great support and it's been really nice to have all this time to spend with them.
Best wishes to all those pending surgery and speedy recovery to those on the post-op side.
It's hard to write an update about all of the positives when faced with the stark reminder of how fragile and serious our conditions can be with the passing of Lisa today. It reminds me to live life to the fullest and cherish the moments we have; as it sounds like she did.
This past week has been busy and my body has felt it more than a few times. While I continue to feel stronger I do more and then it's like I hit a wall......I need to lie down and take a rest. I seem to recover pretty quick but I can tell that I don't have the stamina just yet. Walking has been pretty consistent and I'm still doing the same 4.25km loop twice a day. In the 3 weeks I've been home I've walked 134km! next month I'm planning on stepping up my walks to jog 500m, walk 1.5km and then progress to 1km jog/1km walk. We'll see how that goes.
I've been taking my beta blocker (atenolol) on an empty stomach, having a shower, breakfast and then walking. This seems to keep my heart rate about 5 - 10 bpm lower for the same effort.
I'm also planning on getting my bike set up on the trainer this week so I can start spinning my legs, all this walking is stiffening up my legs. I'm pretty excited to get back on the bike. I would prefer to ride the rollers but I think it's too risky in case I wipe out (very rare but there is a chance).
I feel like sometimes when I bend down to pick up something (kids toys, lol) I feel a little out of breath, I don't breathe hard but it's like a tight chest. I also feel it when I walk up the stairs. If I pause and take a nice deep breath it goes away. Kinda strange??? I don't feel that way when I walk and so I'm thinking (hoping) it's nothing and just part of the recovery. I realize that it's going to take a while before my full lung/heart function comes back to normal. It's like through this whole process I've lost all of my fitness and I'm starting back from ground zero. Someone pressed the "reset" button and I'm starting all over.
my weight is starting to come back and although I still look like a pile of bones I have gained a few pounds. My wife thinks I'll gain some weight because my heart isn't working so hard but I'm not sure that's going to happen. My Blood pressure is slightly low (107/60) but I'll see what my cardiologist says.
Tonight we had an awesome New Years party with the neighbourhood friends, nothing like 8 little kids running around with hooters and noise makers! I wish everyone a happy and healthy 2015.
As I write this it was almost to the minute 3 weeks ago that I was wheeled into the OR and while 3 weeks isn't long ago it feels like it was much much longer. This week was another solid week, my weight has stabilized back to normal, my sleep is basically normal except I keep waking at 3:00am for some reason. I'm able to go back to sleep easily but I would prefer not to wake in the middle of the night.
I'm consistently walking a 4.25km loop twice a day. My heart rate average varies between 86 and 97, with a max of 112. I find it interesting to see the variations between my walks. My pace has been progressively getting faster and its at the point where if I walked any faster I would need to start jogging. I'm tempted to start :-) but I think I'll wait until I see my cardiologist in January.
I had an appointment with my GP this week and everything seems good, need to get general blood work done but I'll wait until after the holidays as everything is closed. He brought up some points for me to discuss with my cardiologist based on some new recommendations he recently learned about:
1) Aspirin post op is only needed for 1 year
2) With a valve repair I should only need to take oral antibiotics before seeing a dentist for only the first 3 months after surgery
3) I should be able to return to exercise right away after surgery
I'll update the answers from my cardiologist once I see him in January.
I find that some days I'm still tired in the afternoons and it's nice to have a rest on the couch, otherwise with 2 little kids there isn't much "rest" around here. My wife has been a champ through all of this. She's been doing 90% of the work with the kids, I'm not sure how I'm going to repay her but I owe her a lot!
Thankfully my palpitations have almost fully stopped for the past 4 days which is really nice. While I realize they aren't critical or dangerous they certainly were bothersome and unnerving. I'm hoping my body has started to knit itself back together.
I'm most grateful that on this Christmas Eve, I have a beautiful wife, two wonderful kids......and a mended heart. Best wishes and Merry Christmas to all.
Overall this was another good week, I can feel myself getting stronger every day. Going to the ER was definitely a set-back but it now seems that my heart rhythm has settled out a bit. Ironically today I got a holter monitor which my cardiologist requested and it seems like today the palpitations are the least they've been in a week.
I've been walking a lot, on Monday I think I over did it a little. I did 3 brisk walks for a total of 10km and I felt it the next day. I was pretty wiped and didn't walk too far on Tuesday. Today I had my energy back and I did a solid 4.5km walk in the morning at a brisk pace. My heart rate was nice and low and seems to be returning close to pre-op numbers.
I've been tracking my walks using a GPS to determine my distance and pace and I also wear my heart rate monitor so I can see my rate and also get my average and max. I can really tell the changes from day to day and see the progress.
The pain has been good, the most bothersome part are the incisions from the chest tubes as they seem to be tugging when I stretch my abs. I'm only taking Tylenol 3 times a day and that seems to be fine.
Sleeping has returned to normal and is fairly comfortable. I still manage to sneak in a nap in the afternoons which has been nice. I'm not bored yet but I sense that I'm going to be looking for things to do soon.
yesterday my heart palpitations got more frequent to the point where they were almost continuous for over an hour. We decided to go in and get checked out just to be safe. Spent the night being monitored and there were some funky beats; skipping and also a long time with a double beat rhythm. They weren't too concerned and said it was fairly common post op to have irregular electrical activity. In the morning I saw the cardiologist who specializes in electro physiology and I will be followed up with him - which is great. They doubled my dose of my beta blocker (was on 12.5mg, now on 25mg daily) and essentially told me to go home and don't worry unless I also experience dizzyness, blacking out or chest pain. None of which I have. So I guess its a wait and see. I'll admit that I was scared. Having weird continuous heart patterns is a very peculiar thing to experience. Has anyone else experienced this post-op?
I've been home for three days now and things are starting to return back to normal. I'm managing to sleep well lying on my back or either side in my bed. I was worried that I would be in too much discomfort to sleep in a bed but it's nice that I am able to. My days are pretty basic; breakfast, shower, morning walk, rest, lunch, nap, pm walk, dinner, another walk and bedtime. The walking has been the most enjoyable part. I'm able to do 3 x 40 min walks per day at a nice easy pace. My heart rate has been dropping and is getting close to pre-op numbers. I'm on a beta blocker to lower my heart rate and also control some palpitations I have been experiencing. The most bothersome thing right now is how painful my neck/shoulder is. Not sure what caused it but it's pretty sore. Appetite is coming back and so are my energy levels.
I made it home this evening after a 5 night hospital stay. I spent Thursday in the ICU and then got moved up to the recovery floor for another 4 night. What an experience! Can't honestly say that I would've voluntarily gone through this but I can honestly say that it has been a positive life changing event (so far, LOL). Sometime we need a strong wind to shake all the leaves off the tree, for only once all the leaves are off the true structure of the tree can be revealed.
Medically things went well; my Aortic valve was bi-cuspid and apparently fused in the most common way so that made the repair more possible. Apparently I had a lot of drainage post op and they were concerned, however that cleared and my outlook improved. My red blood cell count was very low but not enough to require a transfusion. It's been improving since.
The ICU was the strangest experience as those who've gone through this will likely agree, so many things happening at the same time, many staff doing many things all while carrying on a somewhat normal conversation in a dense fog. Really it was kind of funny in hind sight.
Just a note to those about to have this procedure: the chest tube removal is definitely the worst part! It's not painful, but feels like a burning sensation for about 10 seconds per tube. Suck it up, it's done early and its the worst part so that is a positive as things get less painful from there on in :-)
Once on the recovery ward I would say it felt most similar to recovering from the worst flue you've ever had: no energy, feeling icky, no appetite - let a lone the other pain(s). Personally I found the pain meds (Oxycontin) were too much for me, I got so sleepy and felt sick that once I got off those the Tylenol was taking care of the pain and I felt much more coherent. Sleeping was the hardest part for me at the hospital. I'm pretty sure it was a combination of the drugs, the timing of events and the noises but my circadian rhythm was thrown out of whack. By the 4th and 5th night I was able to get some sleep with the aid of a sleeping pill - cool dreams though! wow.
Today was the battery of tests; chest x-ray, echo cardio gram, ekg, physiotherapy.....and a few more. The echo looked good, very minimal leakage so everyone was happy. They came to my room later to tell me that my ejection fraction was greatly reduced to 35% which is essentially heart failure. They weren't sure what caused it but suspected that it was because my heart had been working so hard with the leak that with it resolved it couldn't pump properly. Scary! I had a consult with the heart failure nurse and was referred to their clinic etc........suddenly the doctor appeared and said "I've got good news! the echo dept. calculated your ejection fraction and it's actually at 50 so your good. No heart failure!". I've got to admit that was all a bit too much on a discharge day. Funny thing about it was that while my wife (a nurse) was in the room she fully realized how serious the 35% was, I on the other hand wasn't concerned.....I was going to fix that and knew I could (didn't know how but I would find a way). Strange how a first reaction can really dictate the path of direction one takes - positive or negative. Certainly of my learnings from this experience.
Either way, I'm going to have another Echo done in the near future at an other location just to confirm that I'm on the right track and to monitor my heart's improvement ('cause it's only going to get better).
My support team was great, my sister (also a nurse) came and stayed at the house for a week to switch off with my wife and watch the kids and then come visit at the hospital. Adam's book was great, and was pretty accurate. It was interesting to speak to the different patients and hear their stories. I was rather surprised how many had very little knowledge about what they had done or why. It was nice to chat with the others and pass each other walking around the halls. Everyone just itching to get out of there.
Well after all that and now I'm home things do return to normal rather quickly. The kids still cry, dinner needs to be made, baths need to be given and books need to be read. These are the special things that I do appreciate, and oddly enough....kinda missed.
Thank you all for your well wishes during my surgery - it means a lot to know you are out there.
Just a note to let everyone know that after being bumped from the first surgery of the day due to an emergency case, Jason was finally taken into the OR at 3:00pm. The surgeon was able to repair his Aortic Valve, and his is now recovering in the Cardiac Surgery ICU. Thanks so much for keeping him in your thoughts, I know this board was a great support to him in the lead up to his surgery.
I will update more in the days to come.
Merryn (Jason's Wife)
T'was the night before surgery and all through the house....
Journal posted on December 2, 2014
We had a nice traditional "Canadian" winter evening; salmon BBQ and then sledding at the park with the kids. We'll get the kids off to bed here shortly then the complicated shower / wipe down pre-surgery procedure, pack my things and set the alarm for an early morning. Need to be at the hospital for 5:45am. Thanks to all for your great advice, support and for sharing your stories. I'll sign my last pre-surgery post with one of my favourite quotes;
"If you find a path with no obstacles, it probably doesn't lead anywhere." [Frank A. Clark]
9 vials of blood, EKG, chest X-ray, interview with nurse, interview with anesthetist, list of instructions (which I forgot to take with me). It was like a scavenger hunt around the hospital neighbourhood :-)
I had a consult today with the 2nd surgeon that will be doing my operation. Their main objective is to perform a repair of my aortic valve instead of replacing it. Apparently it's quite a specialty and requires a lot of experience so that's why the two surgeons. I'm pretty excited about the repair option. There aren't a lot of statistics on longevity of repaired valves because they haven't been doing repairs that long, however there is a potential for it to be a lifelong solution. If it's not possible to be repaired now, or if it doesn't last long then my option is to have a mechanical valve. I decided on the On-X, although the surgeon said they are essentially all the same. There are only a few surgeons in BC who perform repairs and I have 2 of them so I couldn't ask for more than that.
Now it's time to finish things around the house, get my Christmas shopping done and spend some time with the family.
8 months ago I went in for a regular check-up and now I'm booked for surgery, I never saw this coming. All I can say is that we're all so fortunate to live in a part of the world where this kind of health care is even possible. Count our lucky stars.
Has anyone ever heard their heart "squeak"? I head it while sleeping, it woke me up and I listened for a while, it was interesting, not scary. I'm assuming it was the sound of the blood moving through my bi-cuspid aortic valve but I've never heard it before. It went away after I moved off my side and I couldn't hear it again. Maybe I just need to add a little more fish oil to my diet. LOL.
Interesting news today in Vancouver. Surgeon did a TAVR procedure without anesthetic. Leads the way to the future of heart surgery! read about it here http://www.theprovince.com/Long+winded+procedure+Paul+gives+Squamish+sister+some+with+video/10329756/story.html
Over the many years of racing and just living.....I've found the need to have a psychologist in my corner. From a specific sports psychologist to help train and prepare for races to a cognitive behaviour therapist (CBT) to help approach the regular challenges of everyday life. I felt that this was a better time than any to re-visit and bring that support back into my life. Adam made mention of it in his book and suggested to have professional support during this time. Great advice Adam....thank you. Today I went to see my CBT for a "tune-up" and had a great visit.
I talked to my surgeon today to ask a few questions (I'm still searching for my ideal solution). He advised that doing a repair to my aortic valve was the best scenario for me as there are very few concerns afterwards regarding clotting, infection or leakage. Of course this repair may only last 10 years it was still a better option than replacing the valve, tissue or mechanical. He suspects that the TAVI procedure will be much more common and accepted in another 10 years and that may prove to be an option at a later date.
I asked "If a repair is a 10 year solution, then why would he suggest a mechanical valve instead of a tissue valve?". He said that a tissue valve carries the same or similar risks as a mechanical valve regarding infection, leakage and clotting. So it makes more sense to do a mechanical valve given my age (40).
What I've now finally realized after much research, debate and discussion is that I really don't have to make this decision....the surgeon will make it for me when he gets in there and decides what is best. Heck after all that's why he's the expert, I'll take what I get and play with the hand that's dealt.
I'll think of it as a surprise to look forward to when I wake from surgery!
Since I was "officially" diagnosed with an aortic valve issue my cardiologist told me that I can't lift anything more than 20lbs nor can I do any isometric exercises. He also advised that I don't do any rigorous exercises so as not to strain my heart beyond necessary. I followed his direction but I also stopped riding my bicycle to work (which I've done nearly every day for over 10 years). I didn't realize it but not being able to ride was starting to bother me as I was feeling very limited. I talked it over with my GP he felt that moderate exercise (what I can tolerate without feeling winded) would be beneficial to keep me in as good of shape as I can be in before my surgery.......so today I started riding again and had a most enjoyable ride this morning and again this afternoon. I took it much easier than usual but that was Ok, I was still riding!
Today I had a consult with my surgeon to make a final assessment. I'm on the wait list and it looks like it will be the end of October or November. They'll give me a week notice but otherwise it will be a surprise - I can think of better surprises but I'll take what I get at this point.
Surgeon said that a repair of my aortic valve would be his first option, with replacement being the back up plan. He won't know until he gets in there - makes sense to me. I have to get a CT scan done in the next few weeks and that will be the last test, I'll have had all of them.
My plan is to take the week before the surgery off to finish any last minute preparations and enjoy the time with my family :-)
I'm finding lots of good information on this site and enjoying reading everyone's experiences and advice - thank you all.
April 2014 I saw my GP for a regular check up and to investigate some heart palpitations and fatigue. The fatigue was mostly only when I was biking with my friends, I noticed that I was having a hard time keeping up. The GP noticed I had a heart murmur which had never been noticed before. In May I had a halter monitor test which showed that I had palpitations - I knew that - that's why I saw the GP. In June I had an Echo Cardiogram, that test confirmed the leakage of the valve and also that my left ventricle is enlarged. In July I saw a cardiologist who then put me on a restricted exercise routine - no lifting anything beyond 20lbs (I have a 2 year old and a 5 year old so that's rather difficult). In August I had an angiogram and it confirmed my arteries to my heart are clear - good new! and also confirmed how severe the leakage is. So my final diagnosis is; I have a bicuspid aortic valve that is leaking "severely" and needs to be replaced.
Sept. 2nd I have an appointment with the surgeon - I'll update afterwards.
So as you can see things take time in Canada (unless your condition in urgent) but I'm optimistic the surgery will happen in the next few months. Fingers crossed!