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/

Hello Tim. Terrie here from California. I am sorry to hear that you won't be having the procedure you had your "heart" set on. That had to be difficult. So now it is the Mechanical/Tissue question before you and I am sure you have been looking into both and reading from the community about them. I think because you are so young that it is normal for most medical advice to steer you towards mechanical. I believe that the best person to talk you through this with will be your surgeon. He 'she will be the one performing the surgery. Also the one with the history of having performed many of the valve surgeries with experience on all ages/types of people. I think I would ask to talk to any surgeon on this subject just to be able to have that informed opinion with people who have the skills and knowledge to give you a great answer that may make you feel sure of the decision before you. I think another cardiologist is a great idea for the same reason especially if you give them your concerns on each valve. Experience is the plus here. What does your wife think of your choices? Any Family members helping you out on this? I know that at the age of 65 my reasons for the tissue valve make the most sense for me and that mostly I believe that technology in cardiac care is going to just keep getting better and not to far from now. I also feel that if I make it through this surgery I will do my best to eat heart healthy and be in great shape for the next replacement by then should it be necessary. So I hope that you talk to the specialists and get a better feel for what is right for you and totally agree with your thoughts to do just that. I will hope and pray for you that the anxiety of this time in your life takes a back seat to the overall knowledge that whatever you choose for whatever reasons will bring about an outcome where life will be so much more healthy and full for you and your Wife. All of this pressure you have had in your life for so long will come to a place where your body and heart will be healed. Love, Terrie

Tim I hear you on the valve question. I had my Aortic valve replace with a mechanical valve about a month ago and it was the best decision I made. I am 59, very active and could have gone either way. The suggest pig valves for older folks and Mechanical valves for younger folks. Since I am so active, 52 marathons, I look at myself as younger rather older and did not want to do this all over again since the useful life of a pig valve is about 14 years. Open heart surgery is bad enough once and for you at 29 you might be looking at this 4 operations as where the mechanical valve will out last the rest of you. There are some down sides but after a month don't really see them as valid concerns. When there is complete silence you can sometimes hear the clicking noise when the valve closes but you do get use to it over time. You might have to stay in the hospital a few extra days to get your blood thinning factor, know as INR up to the required level to prevent blood clots. This will require you to take Coumadin for the rest of your life and to adequately prescribed the required dosage will need a finger prick blood test every few weeks. That is also no big deal and in my case is well worth now having a valve that will last a lifetime since I really did not want to go thru the open heart procedure in my 70"s. I hope this information helps and if you have any questions do not hesistate to ask. Tony

Hi Tim - I am having surgery this week for BAV but I am i my sixties. I believe if you have to have valve replacement, its worthwhile doing some research about the pros and cons of the different valves. I hope i am offered a mechanical valve because i just dont want to have to go through all this again in a few years time. This blog is a great support and also when you start following people through their heart surgeries pre and post, it gives such a lot of insight into what may happen or to expect. Have lived in Melbourne myself and second to Brisbane is my favourite oz city.

Hello Tim. Terrie again up in California having a first cup (only cup)of coffee before going off for some lab work(yawn!) I mentioned to my husband(37yrs)your post yesterday and he brought up a point that needs mentioning. Let your wife know if there are things she has questions about as well that there are many caregivers, family members, spouses, partners on this site with the ability to give her support as well while you "two" follow this path where it leads you. I know that I pick up from this community many insights as to what it Is like for those who love us and who we will depend on for help. I think it is almost as hard for them to quite know what to do at any given time given the ups and downs of where we go both mentally and physically as our symptoms (if and when you have them show up). My own personal experience has been that my husband who was used to kayaking, biking, taking walks, having me mow the lawn, garden, pack and move us this past year saw me get to a point where going upstairs leaves me puffing, walks, biking, etc. were ok up until 6 months ago and it is hard for him to watch how frustrated I have become at times that I can't be the old me! But he is encouraged that this is only temporary as the surgery will help put my beautiful heart and yours will as well, back on track. So you already know you are blessed with her love and now you have a whole community of hurt and mending hearts to take part in so know the two of you are not alone and that the questions and answers will become clearer and hopefully calmer as you move forward. Have a good day there in Australia and be good to yourselves!

Hello Tim. My name is Terrie and I also have Aortic Stenosis and will have surgery on Aug. 20th. After reading your story I would like to say that your anxiety is probably the most common symptom we all here at this site have in common as it is only natural when preparing for the fact you need surgery. I am 65 yrs. old and have to say that at 29 yrs. of age you have so many years of healthier Heart health ahead of you and I hope you realize that everyone on this site will do all they can to answer questions or head you in the right directions for help you need in getting through this. As to you possibly having the Ross procedure I see you have already heard from Julia and will no doubt hear from others who have the experience with that procedure to offer up advice. I have chosen the Bovine Tissue valve with my surgeon and the main reason is that I did not want to deal with blood thinners the rest of my life and like Bob and others here at this site have confidence that if another surgery is needed down the road they will have advanced their techniques so well the next may be less invasive. The best person to help you decide will more than likely be your surgeon who will have all your facts and details of your heart to help determine the best for you. So whatever the case try hard to keep strong and confident that after this is over you will begin a great new chapter in your life. We are all here for you so don't be afraid to ask any questions and keep reading about the many people who are not only where you are headed but have already gone through their surgeries and have much to share with us all. Looking forward to reading more of you and how you are doing. Take care now.

seems to be closest to the valves we are born with. Not sure if I would be comfortable with hearing the noise of the valve. As mentioned by my surgeon and research. If a mechanical valve fails I am not sure if we would know. Tissue valve I believe testing would reveal when it is necessary for another replacement. These are just my thoughts. Hoping you will be approved for the Ross Looking forward to hearing your thoughts. Again, welcome to your new heart family!

Hello Tim, Welcome to the heart family! I am 58 years old. Was diagnosed with mitral stenosis at age 40. I knew at some point that a valve repair or replacement would be necessary. I am scheduled for surgery on July 29th. It is hard to stop thinking about it. My heart family has been a great support for me during this journey. Its amazing how many people have similar situations.These friends are here to help one another. As far as the valve type goes, I have done a lot of research and will be choosing the tissue (bovine)valve if replacement is necessary. One of the reasons I am comfortable with the tissue is, hopefully blood thinners will only be needed for a short time. The tissue valve

Tim, Good luck to you on the test reslts. I had Ross on 5/15. I am very glad that Dr. Ryan could perform Ross on me. Before going to OR, I asked him what he would do if he didn't think Ross would work when he opened me up. He said he would still do an aortic root replacement, as in Ross, and put a big Bovine valve so that down the road I could get a valve in valve w/out open heart surgery. But I am 50 and you are still in your 20s. I suggest you talk to your surgeon. BTW, I am very happy w/ getting Ross. I only take a baby aspirin & half of metoprolol now for my heart. Best wishes to you.

Hey Tim. Welcome aboard! You will find all the help you need about valves and surgery. I am choosing the tissue valve because I suspect in 10 or 15 years (knock on wood) we should be implanting these without open heart surgery. I think one must take warfarin with the mechanical valve but read the posts because there are some good arguments pro and con about this. Good luck and looking forward to reading your posts.