Peter's Heart Valve Journal

Peter Eglinton  Past 24 hours have been better. Most recent round of blood work shows elevated white blood cells (i.e., an infection somewhere) and liver numbers. No significant ... Read more

Peter Eglinton  Past 24 hours have been better. Most recent round of blood work shows elevated white blood cells (i.e., an infection somewhere) and liver numbers. No significant other symptoms. This morning is the last of most of my meds. I'll only be on a few vitamins I used to take plus a beta blocker. I've cut out acetaminophen. Here's hoping to an uneventful few days!

Peter Eglinton  Past 24 hours have been better. Most recent round of blood work shows elevated white blood cells (i.e., an infection somewhere) and liver numbers. No significant ... Read more

Peter Eglinton  Past 24 hours have been better. Most recent round of blood work shows elevated white blood cells (i.e., an infection somewhere) and liver numbers. No significant other symptoms. This morning is the last of most of my meds. I'll only be on a few vitamins I used to take plus a beta blocker. I've cut out acetaminophen. Here's hoping to an uneventful few days!

Peter Eglinton  Past 24 hours have been better. Most recent round of blood work shows elevated white blood cells (i.e., an infection somewhere) and liver numbers. No significant ... Read more

Peter Eglinton  Past 24 hours have been better. Most recent round of blood work shows elevated white blood cells (i.e., an infection somewhere) and liver numbers. No significant other symptoms. This morning is the last of most of my meds. I'll only be on a few vitamins I used to take plus a beta blocker. I've cut out acetaminophen. Here's hoping to an uneventful few days!

Peter Eglinton  Thanks. I've been in frequent contact and they've done full blood workup (including 7-day blood culture), chest x-ray, EKG, urine tests. No obvious culprits. ... Read more

Peter Eglinton  Thanks. I've been in frequent contact and they've done full blood workup (including 7-day blood culture), chest x-ray, EKG, urine tests. No obvious culprits. I'm hoping they figure it out. I'm fine though the morning, actually sometimes low. Fever kicks in like clockwork around 3:00 p.m.

Diane Esposito  Hi Peter, I’m hoping you’re doing well; I know that the first few days after surgery were kind of a blur and I didn’t feel much like writing an update ... Read more

Diane Esposito  Hi Peter, I’m hoping you’re doing well; I know that the first few days after surgery were kind of a blur and I didn’t feel much like writing an update but preferred to be sleeping! Sending you positive energy!

Heidi Rockwood  Sandra, thank you for your comments-this is helping me too. Am debating about mechanical/tissue at age 54. Warfarin scares me as I am rather klutzy and always ... Read more

Heidi Rockwood  Sandra, thank you for your comments-this is helping me too. Am debating about mechanical/tissue at age 54. Warfarin scares me as I am rather klutzy and always have bruises/paper cuts/dings from everyday life.

Peter Eglinton  Thanks, David! Your story does help. I'm headed to Mass General for my surgery, but will continue follow-up visits with Dr. Lualdi, also at the Scarborough ... Read more

Peter Eglinton  Thanks, David! Your story does help. I'm headed to Mass General for my surgery, but will continue follow-up visits with Dr. Lualdi, also at the Scarborough campus. He, too, thought TAVR would be an option in the future. Take care.

Mike Roskowinski  Peter keep your head up and you will be just fine. I think once your picture is off the upcoming surgeries list mine will appear. A week from today you will ... Read more

Mike Roskowinski  Peter keep your head up and you will be just fine. I think once your picture is off the upcoming surgeries list mine will appear. A week from today you will be back up and posting how you are feeling. Enjoy your days till surgery and relax and take your recovery one day at a time. Prayers for you and your family.

Peter Eglinton  Thank you so much for your note. I really appreciate your insights. I have decided to go with a tissue valve if they are unable to repair mine. I look forward ... Read more

Peter Eglinton  Thank you so much for your note. I really appreciate your insights. I have decided to go with a tissue valve if they are unable to repair mine. I look forward to having the surgery behind me... Take care.

Mike Roskowinski  Hey Scott and Peter. I am 39 and going with the mechanical valve so I don’t need to keep having surgeries. I did not read about any limitations with lifestyle ... Read more

Mike Roskowinski  Hey Scott and Peter. I am 39 and going with the mechanical valve so I don’t need to keep having surgeries. I did not read about any limitations with lifestyle besides checking blood and diet. If you guys know different let me know. I would rather just do one and done for the surgery. My surgery is May 6th and I have two kids that are active and love being outside.

Peter Eglinton  Hi, Mike. I hear you regarding the benefits of avoiding surgery. I am hoping for greater availability of TAVR in 10 to 15 years to avoid OHS. Not sure whether ... Read more

Peter Eglinton  Hi, Mike. I hear you regarding the benefits of avoiding surgery. I am hoping for greater availability of TAVR in 10 to 15 years to avoid OHS. Not sure whether that'll be a good bet or not. (My bigger hope is that they'll be able to repair my valve and I won't need a replacement, but I am fully prepared if they cannot.) I landed on tissue because of several factors. I really would not enjoy frequent blood checks at home and at the doctor's office. Many people say it's totally manageable and not a big deal. For diet, I prefer a plant-based, whole foods menu when I can -- but am not thrilled with needing to monitor daily changes and adjust my dosage. I fully recognize that diabetics need to check their blood, give themselves injections, and watch their diet, but I can't get my head around it at the moment. Another factor for me is the clicking sound that many report. Here, too, I've also heard that it's manageable and eventually is not noticeable. Yet another factor for me was the thought that I might get into an accident and need folks to get me to a hospital where they could administer an antidote to the anticoagulant. One person said they try to be within 2 hours of a "top-flight" hospital when they are traveling. I have no idea how reasonable it is to be concerned about this issue. Lastly, I heard that folks on anticoagulants who need a medical procedure that might involve bleeding need to come off of the anticoagulant for some period prior to the procedure and give themselves two injections per day of a medication to prepare. That really has me spooked. (I am a needle phobe who would rather minimize injections.) Again, I realize most people might not be bothered with that.

I am 56 and that much closer to the age when tissue valves are more common. That said, I'm still in the nasty gray area where there is no easy answer. (I think mechanical valves are highly recommended for folks 50 years old and younger.)

I'm finding that the valve question has dominated my mind far more than the aneurysm repair and OHS itself. I hear compelling arguments for all types, with pros and cons for each. My cardiologist recommended tissue, and my minister had a vision of a tissue valve when she was praying on my behalf (go figure). Meanwhile, a patient I talked to picked tissue and said that after his experience with OHS he might have changed his mind. Arrgghh!

Sorry for the long post. Despite the rambling, I am finding myself at peace with my upcoming surgery and looking forward to getting it behind me. Best wishes to you!

Tim Saint   G'day lads, interesting discussion, as I contemplate ohs #4, what valve to get is an important decision. After a valveotomy in 1978 aged 10 due to a severely ... Read more

Tim Saint   G'day lads, interesting discussion, as I contemplate ohs #4, what valve to get is an important decision. After a valveotomy in 1978 aged 10 due to a severely diseased bicuspid aortic valve, my valve needed replacement in my late 30's. That was back in 2006 and I trusted the opinion of my surgeon who chose a st jude medical heart valve. 18 months later I was back under the knife as my valve was leaking severely around the valve due to stitching failure. Obviously I have been on warfarin for the past 13 years which hasn't been a limitation on my diet or lifestyle if you keep consistency. Had a broken nose which needed repair about 10years ago and that turned into 10 days in hospital due to excessive bleeding. Also an episode a bit over a year ago I took a supplement which reacted with my INR, broken blood vessels in my eyes and urinating blood which was a little scary a day or 2 before flying to LA with the family on holidays (inr 5.1!!). So generally warfarin is manageable but can have it's challenges. Annual check up in February this year confirmed that this valve is leaking severely, it leaked mildly initially and has progressively worsened. Not sure yet if leak is due to thrombosis, pannus or leaking around valve again, will get a better idea on 8th&10th of May when angiogram, CT & TOE scans are carried out. So it is safe to say that mechanical valves aren't fool proof in saying that I have got 13years of extra enjoyable life out of this valve and I doubt I would have got that from a tissue valve. So 3rd ohs in 13 years!! What to get??? Having scoured the internet in past weeks, inspiris resilia or on-x?? My surgeon and cardiologist seem reluctant to give a definitive answer as I am 51 and therefore no conclusive way to go. Each ohs comes with greater risk due to scar tissue, bleeding etc. And ohs #5 just isn't that appealing. All the best warriors.

Scott Ainsworth  Hi Peter and Mike! It really is a decision that played on me also, in fact I would think it was my hardest in life to date as I doubt none of us like thinking ... Read more

Scott Ainsworth  Hi Peter and Mike! It really is a decision that played on me also, in fact I would think it was my hardest in life to date as I doubt none of us like thinking so far ahead of life about health issues. For Mike, my little girl was a big decider, I really want to be an active dad to her and the thought of not be able to teach her to ride a horse because of the fear of a fall and the consequence of anticoagulants kills me. I am finding it hard now with no lifting for up to three months heartbreaking as she is 18 mths old and can’t understand why daddy can’t pick her up. My fear of repeat surgery also scares me still for the future, but I am working on the belief if I can do this once and recover, I can do this again. For Peter, I hear you regarding being a needle phobe! After my initial heart attack a few years back my pancreas stopped working 3 days after and I have been a insulin dependent diabetic since with at least 2 injections again, I can tell you for me, I have not got used to it and still dislike daily injections, to me there is no getting used to it. After my surgery recently I had an Afib issue and they have put me on Warfrin for a few months, plus last week we found a nasty blood clot in my left leg. I am currently having a blood test every 3 days in which I wait for the GP to call later that day with dosage instructions. It is playing with me mentally between the monitoring of blood sugars and INR levels for anticoagulants. As I had IE which led to my MV replacement I have spent over 60 days in hospital and my wife worked roughly out that I have had over 250+ needle pokes whether insulin or bloods, you’d think I would be used to it right lol, but nope. I also have heard patients with mechanicals tell me the clicking sound keeps them up all night and that their sleep patterns were suffering since. Also as I had IE it was advised to me a greater chance or reoccurrence is possible with mechanical. Either way you go I wish you all the best with the surgery and for a fast recovery!

Scott Ainsworth  Wow Tim, by the time you’ve finished the 4th you’d probably be able to do the surgery yourself! Thankyou for the words on Warfrin as I know for me currently ... Read more

Scott Ainsworth  Wow Tim, by the time you’ve finished the 4th you’d probably be able to do the surgery yourself! Thankyou for the words on Warfrin as I know for me currently I am not enjoying but I will be having this conversation again with myself in hopefully 10 years and not before, so to hear someone who has found it manageable has given me hope for the future should I take a mechanical. I am sure technology between now and then will be different so I guess I will have different questions to consider also before the next OHS. My cardiologist and thoracic surgeon were like yours and each answer I got was ‘it depends’ lol. I’m feeling you on that definitive answer your searching for. Something tells me your going to make number 5 work out just fine brother!

Peter Eglinton  Thanks for your note. My aortic root is about 5.0 cm and the ascending aorta is about 4.8 cm. Seven years ago I was told I could probably go 5 to 7 years before ... Read more

Peter Eglinton  Thanks for your note. My aortic root is about 5.0 cm and the ascending aorta is about 4.8 cm. Seven years ago I was told I could probably go 5 to 7 years before needing surgery. He was right. Given the combination of the aortic root replacement and valve, I'm going in for a full sternotomy. I am currently planning to choose a tissue valve if mine cannot be replaced, hoping that catheter-based surgery is available when I will eventually need a replacement...

Ron Weaver  Well, your plan sounds a lot like mine. I agree with your choice for the tissue valve. My problem at the moment is my health insurance is an HMO that I have ... Read more

Ron Weaver  Well, your plan sounds a lot like mine. I agree with your choice for the tissue valve. My problem at the moment is my health insurance is an HMO that I have to keep due to retirement obligations. I’m not sure the surgeon does enough of these surgeries. I d like to choose my own surgeon. Like some of the surgeons that are interviewed on this site. I’m sure I’ll figure it out. But in the mean time, take care of yourself and I’m looking forward to your future posts.

Peter Eglinton  Thank you so much for the offer to send the book. Because I'm not the fastest reader, I ended up downloading the electronic version so that I'd have as much ... Read more

Peter Eglinton  Thank you so much for the offer to send the book. Because I'm not the fastest reader, I ended up downloading the electronic version so that I'd have as much time as possible - and be able to read from anywhere. I'm sure someone else will also benefit from your offer! Thanks again for your update. As I approach the 2 week countdown, things are starting to get very real. Hearing about positive outcomes and tips has been super helpful.

Kim Boardman  Sorry I didn’t get back to you sooner about the book. I had only known about my Bicuspid Valve and aneurysm about three years before my surgery. One of the ... Read more

Kim Boardman  Sorry I didn’t get back to you sooner about the book. I had only known about my Bicuspid Valve and aneurysm about three years before my surgery. One of the biggest things I learned after my surgery was to accept help when offered. I had always been a person to reply, “No thanks, I can do it”. People love to help! By accepting their help, you are receiving a gift from them. I had always been the person only wanting to do for others. So what valve have you decided on? I will be following your journey and praying for you.

Mike Roskowinski  Peter I am right there with you! I know that it is starting to feel so real. I have to travel to Chicago next week for work and then it will be my two week ... Read more

Mike Roskowinski  Peter I am right there with you! I know that it is starting to feel so real. I have to travel to Chicago next week for work and then it will be my two week count down. I have the normal nervous and anxious feeling I am sure anyone has before they go in for surgery. We will make it through this and be in recovery soon. We will be able to share our stories as we move forward with our lives! You will be 1 week out once I go in!! Keep your head up and be positive! It is something that will prolong our lives for many many more years so like William said above its just some pain we can get over it.

Meredith Bray  They wouldn't let me out of the hospital until I made a present for them! I didn't know that was a qualifier until day 3, so I had prunes and coffee and oatmeal. ... Read more

Meredith Bray  They wouldn't let me out of the hospital until I made a present for them! I didn't know that was a qualifier until day 3, so I had prunes and coffee and oatmeal. The constipation comes from all the painkillers & anesthesia.