Tim's Guestbook

Hi Tim, I just read your post after googling about Justin Negri. I'm based in melbourne too. My issue is my pulmonary valve, it has been pretty stable since I was a child but I've had no exercise tolerance. My cardiologist had just accidentally discovered an aneurism and so I'm headed for surgery. I have 2 questions- 1. Have you got a good cardiologist you could recommend? I've changed a few times as they each have no expertise in congenital conditions and seem at a loss with what to do with me since I'm not in my 70s. 2. Are you still happy with the decision of a bovine valve? 3. Should I go with Justin Negri? I've been referred to someone else, but I'm fo unhappy with my cardiologist I'm not keen on her recommendation. Cheers, nichole

Tim. I am happy for you and your wife that your waiting is not long. I am sorry you couldn't have the ross procedure and happy you found a Dr. you are confident with. I am also having an aortic valve replacement with a bovine tissue valve on Aug. 20th. By the time I get out to recover you may be headed in. I will pray that all goes well for you along with your Brothers and Sisters here in our community. Please feel the love and comfort offered up in many prayers for you and your heart! I also hope you might hear my results in the not too distant future where you can say well "If that ditsy 65 yr. old lady who talks to her imaginary friend Is doing this well, well just think how great I will do! Much love, Terrie

Hi Tim glad your happy and ready to on. I'm also happy with my surgeon visit to. He suggested the mechanical valve. I explained why I didnt want it and said I wanted the tissue valve he was ok and said I will have the Bovine valve. He said one thing he dose in all surgery cases. Is have both bovine and porcine and obviously different sizes. I also found once I met the surgeon I felt a lot happier all round. I dont have a date at this point poss 2-3 months. Six weeks will go fast keep us posted on your Journey. Best wishes

Hello Tim, It is Mia (Mary). I am very happy you have found the peace to go forward. I was the same way and once I stopped worrying things were good. Not sure if you read my recent journals. You may want to as I wrote some suggestions that may help you. I made the choice of the tissue valve. My surgeon chose the pig valve. I have been very pleased so far. I think the noise and the blood thinners would have not been a good choice for me. The mechanical valve is perfect for some patients, just not for you and me. You are younger than my youngest son. I have two sons one 30 and 34. You are smart to get this journey going. You will have a healthier heart that will provide you with new energy and a love of life. I am walking daily, almost off pain pills. I will continue to be a part of the heart community that Adam created. Thanks to Adam we have friends from all over the world. Keep me posted on your surgery date. Oh, I would definitely suggest a power recliner. I had the surgical procedure under the breast(noninvasive). Its invasive but my chest didnot have to be broke open. Have a wonderful day Tim! Enjoy each day and keep journaling. Your heart sister,

Hi Tim There is three tissue types Bovine-cow Porcine -pig Cadavers -human donor. Like many others Ive done a lot of research and still continue to do so at this moment. Ive got my pre op chat at Papworth in the afternoon tomorrow. So Ive decided def on the tissue but still doing research into all three. Human tissue is rare I know that. So maybe down to the other two. I will be asking my surgeon about minimal incision. To see if thats poss. Maybe not but still going to ask his thoughts on this. I get to meet my surgeon tomorrow afternoon for the first time. So Ive been nervous all day today. At least this time tomorrow I will will know whats what and move forward from there. Some surgeons say some tissue valves last 8-10rs some same 10-15 some say 20-30 plus... So you cant win on that one.. as for having a second op with tissue valve. This Op is being updated all the time if you do have tissue valve keep in mind the next op wont be the same it will be poss via the leg arm or chest. I'm still learning all this like yourself. Only found out on 17th of June I need an op :( Keep positive

Hey Tim, I wanted the Ross too. I couldn't get my insurance to cover it and everybody was trying to scare me out of it. I may be 44 but I ride mountain bikes all the time. I used to race motocross so I have a Dual sport that I ride too. Well I ended up getting the mechanical valve on July 1st. All can hope for is that I don't hit my head to hard. I will probably slow down a bit when it get sketchy. I had my surgery 30 days ago and I am already back on my bike. I am a bad patient. I am not ever supposed to drive for another two weeks. I am doing every thing except lifting heavy things. I can still feel my sternum. So now I only use my condition to get out of things. My wife asks me to do things and I tell her that I am supposed to be on bed rest...lol it doesn't work... After getting the mechanical valve I am actually relieved that I got it. I think there was always a question if it was going to work, Would the native valve fail. Would I have to go through this operation again. Well I am happy with my valve. I know that it will most likely outlast the rest of my body.. So don't hang your head low. Make the most of it. I am.... Goodluck

Hey Tim. Yes, it is disappointing and I sympathize with you because some news is hard to take. I am going to support you and follow your posts and offer my help in any way I can. I ask you to do your research about valve types, lifespan and maintenance issues for valves until it hurts or makes sense to you, after all, we haven't done this before. Go easy on yourself and trust your gut to make the right decisions. Compare apples with apples. If it has to be a mechanical valve then check out the stories on this site or ask the questions. Lastly, everyone has a unique set of problems even though we are on the same path. It is how we solve those problems which matters. See Eleanor and Michael posts. Use the information you have today to make the decisions and you may sprinkle a bit of the future in to weigh the balance. That may be the best one can do and you're not alone.

Hi Tim just read your journal I to need a aortic valve replaced. I'm also leaning towards the tissue valve and not the mechanical valve this choice is massive. I'm waiting for my op date still two weeks ago I had a angiogram and it was a nightmare have only just got over that. Like yourself I was going through a worrying stage. Ive calmed down a lot by doing endless research. Keeping in contact with people on here and also the british heart foundation. I'm a member of that. I also started a pvt group on face book as it was easier for friends and relatives to follow my updates on there than txt and call all the time. That has helped me a lot. We moved a double bed down stairs and made the dinning room into a bedroom. As I struggle a lot with the stairs and get tired a lot. Do you have a date for your op yet. I have been told by someone on another site that the new tissue valves are lasting far longer than the old ones.20-30 plus years. Also if and when you have another op the go via the leg not open heart again. All the best to you

Hi Tim, I turned 50 last year when I got my new heart valve. I'm young enough that I would need another heart valve surgery within my lifetime if I didn't go with a tissue valve instead of a mechanical. I didn't want to deal with blood thinners and the clicking sound of a mechanical valve, so I opted for a bovine valve replacement hoping that by the time I need another valve replacement, heart valve surgery will have advanced enough that Transcatheter Valve replacement (TAVR)will be more the norm and I won't need my sternum cracked open again. You also might want to look into equine valve rather than a porcine or bovine valve. They have fewer phospholipids which contribute to the ruin of tissue valves and so theoretically have a chance of lasting longer. Check out this video about equine tissue valves: http://www.heart-valve-surgery.com/heart-surgery-blog/2011/02/13/horse-equine-valve-replacement-stewart-video/