You are still dodging those bullets so way to go. I sincerely hope you feel as well as your echo shows. Even though you know surgery will one day come - know also that every day you are getting that much more prepared and your surgeon is getting that much better!
Thanks for the sweet message left in my guestbook. I'm glad to see you read Duane's message in particular and pray you find some solace in his words. Each of us believe our lives are precious but when I look here and see how many young people are on this site, it makes me feel very motherly with concern over what is at stake. Times and situations such as these can't help but make us just a little more fearful but our choices unfortunately are not many. Keep strong.
Hey Patrick, don't be too concerned yet about that echo.
I sent you a contact email through Trevor's blog, but then found your journal so thought I'd go direct.
As for your echo... I am 36 and have been following my valve it for 21 years. I have a bicuspid valve and I've had many echos. They are different every year, sometimes better and sometimes worse.
This is what I've found, but realize everyone's different and blah blah blah (disclosure)....
I exercise moderately hard to very hard around 6 days/week. I had switched from a primarily cardio type exercise to a more crossfit type about 4 years ago. If you're familiar with Crossfit or Gym Jones, then you know what my workouts were. I found that for the first couple of years my echoes improved, but then last fall - wham! Things went ugly all of the sudden.
I talked to the Dr. about my exercise regimen and we agreed that I should lay off the isometric exercise for awhile. I changed to a much more cardio heavy plan and I hated it. I absolutely loved the buttkicking that I was getting from crossfit. Anyway, I followed through with it and my last echo was much better. Back into the normal range.
It's too early to tell if it will stay this way for the long term, but for the time being I'm still pounding the pavement and stairmaster/rower/airedyne. I mostly said goodbye to the kettlebells and other weights.
I realize that was a bit long for a guestbook signature, but .....
Thanks for the posting to my guestbook. I'm really glad you got your promotion. I'm sure it must give you a good feeling to meet some of the younger people going through this because you can probably more relate to their feelings. You young people really should sail through because you are no doubt more fit to start with. At least I pray that is the case. With your surgery not exactly being elective, it's a difficult time to stop midway through your career for a health problem but you know, probably the patients with young children say it's not a good time for them and then you get us older folks and maybe we don't think this is such a good time either. There just isn't a good time. If you aren't into rugged sports a lot then probably the mechanical is a good choice. I know myself I wouldn't really want any part of a repeat of this surgery. Keep well.
I know this must have come as a real surprise to you as you feel asymptomatic. There have been several people on this HVJ site who have not had symptoms but been told they need surgery. Then there are others who are having difficulty even walking and am sure they are wondering if their surgery could come sooner than the date they've been given. You now have the opportunity to be so well prepared for what's to come so you can make the best decisions. keep us up to date and if there's something you want to know there's plenty of wise people here to help you out.
I was really hoping your surgery would be many years off but that doesn't look to be the case now that your doctor says the time is coming closer. You say you still aren't having all that many symptoms which is good but your getting prepared anyway is good. Taking the time off when you are career building has to be a tough thing to do. Did you get the promotion you were hoping for? I was hoping you did.
By the time you do actually go for surgery you will have read, learned and digested a ton of information from this site and I pray it helps you, your wife and family be confident in all of your choices.
It's a real plus when you can use a hospital that is so close to where you live as that will keep your support group close to you. As you can see our support people are our lifelines.
I've been keeping you in my prayers and wish you well.
Saw your note to me and thanks, for the info. Am still trying to catch up with thanks to all who all who have followed my progress and been so encouraging.Thank you for your posts to me. Since I'm sleeping so poorly will attribute it to that as my diet is pretty steady. What with the anesthesia and all the drugs one is given anything is possible. will mention it to my cardio on Thursday, however.
Just received Dr. Gillinov's Transcript from Adam. I'm sure Adam sent it to all of us but just in case, I wanted you to be sure to get a copy and read what the good doctor has to say about the various types of valves. Take care. Cheryl, Ontario
Glad about the great test results. You said you still wanted to know about coumadin, so here goes. Due to mitral stenosis I went into a-fib 14 years ago and was put on coumadin at that time. I am very sensitive to it and only need a total of 8 mg a week and many people take 5 or more miligrams a day. For the past year I have had my own INR testing machine which is great, a finger stick, drop of blood on the stick and the machine gives me instant results, I then phone in my results. I have bad veins after so many veni-draws. So this is glorious for me. As far as diet, have never restricted anything I eat, but do be aware there are foods (greens and cranberry) that can have an affect of raising or lowering your clotting time. Seems that if you consistantly eat what you want, you levels adjust. If you eat no or minimal greens for weeks than load up on broccoli and salads you will definately lower your clotting time. So, everything in moderation. One thing to keep in mind about type of valves is that the mechanical valve lasts for a lifetime, but am told that sometimes the structures that support the valve can fail and another surgery could be required. When I have my surgery on the 18th I will have 2 tissue valves and although they do have a certain life span am told that Dr Gillnov feels that when that time comes the valves will be dome by a catheter insertion thru the groin, no major incision.I will also have a MAZE procedure with the goal being to get me off coumadin after such a long time. I'd be happy with that. Well, hope my info has helped you and you are wise to gather info ahead of time but don't let it overwhelm you. Great photo of you and your bride.
I just noticed your journal and you have the same issue I had with my AV. If you want to check out my journal you will see what I went through. I am 39 years old and I have a mechanical Aortic Valve. Yes, I am on Coumadin the rest of my life as well as a beta blocker. You may find a surgeon that will give you a tissue valve but most will steer you to the mechanical valve. I did not want to have this surgery again when I hit 50 or so.
Good luck and please do not miss your doctor appointments!
Hope you've breathed a big sigh of relief. You asked me my thoughts on coumadin since I've been on it so long.Since anything surgical is way down the road do you still want my input? Let me know. Again, happy for you about your latest test results.
Thanks for your guestbook posting. Thankfully for me, my surgery was a mitral valve repair, with a reconstruction using an annuloplasty ring. So it's my own valve. Had I needed to decide, I would probably have opted for a mechanical valve, since I am only 50 (for 3 more weeks) and I didn't want to face multiple open heart surgies with the life expectancy of the cow tissue valves. With repair, I thought the need for coumadin would not be there as with replacement. Surprise! Due to my hyper coagulation issues and the stroke I had 2 days post-op, I am on coumadin and will probably be on it for a long time, if not life. It's a bit of a pain, but it'll be okay. When I think about how close I came more than once to "another one bites the dust" (of course, I believe in eternal life, so that would have been okay, just talking earth talk now), I really don't have much to complain about.
At your young age (32 right?), I would think mechanical valve is the way to go. I would be surprised if your cardiologist or surgeon advocates anything but that. But I certainly don't know everything. Ask questions, ask questions, before you decide.
That was some really great news you had to share with us today and I'm really happy everything is looking to be okay at this time. As Duane said, know your own body, get copies of your results and know what they mean to you. I will pray for you and also that you get that promotion you are looking for. Look forward to hearing from you in May. Gee, that'll be spring and everything will be sunny then. Cheers. Cheryl, Ontario
Glad you seem to be getting a handle on all this, both physically and emotionally. As we all know, IT's A LOT! I'm also happy for you that surgery seems a ways off. Do research and keep informed. Ask for copies of your reports (echo) and learn what the numbers mean yourself. Do not hesitate to get second opinions. Be in charge of your own health care. Do not let your heart get damaged while you wait. Like you, I was VERY physically active and fit, and nearly asymptomatic when this first came to my attention last October. I will keep you in my prayers. Keep in touch. And may God guide you and give you His peace.
I'm busy working on my taxes, watching the Olympics figure skating and reading the journals.
You and I both have (me had) the same problem except we are years apart in age but not in mindset. I believe identifying the reason for the fear is the first step. What are you afraid of - dying, complications, pain? Obviously all. Probably more so because of your young age. In the beginning I had lots of fear, hence the anxiety attacks.
Fear - that's why you are here getting support to help overcome your fear. If you learn enough about what ails you, and you arm yourself with everything you need to support you through surgery, your fear will turn to strength and you will amaze yourself at just how strong you are. Your belief in God, in something bigger than all of us, will help you come to grips with all of this and then you too will find yourself here helping others through the maze of being a heart valve patient.
Dying - what are the chances? That is where the website comes in handy because here you are able to find the whereabouts of the medical statistics and not only that, listen and learn from those real life people who have and are experiencing the surgery right here. Statistics are overwhelmingly in favour that you will survive the surgery and go on to live a full life. What to do with that information - be realistic but think positive about survival.
Complications - well, again you can easily find the statistics and also see right here how some of them manifest themselves and play out. The complications are many but then too, many times there are underlying reasons they may happen. What are the results of the complications? So far, so good. While they can be nasty, inconvenient and downright scary, we all seem to be pulling through one way or the other. So far in real life many of us need a little extra tweaking here and there. Seems to be a lot of ways around the glitches that happen so let's hope for the best and not have any glitches but if they happen, we have to have faith in the doctors they can still fix us with a Plan B.
Pain - can't help you there buddy. I can't mask it and say it will only hurt for a little while because that wouldn't be honest. Women are a step ahead with childbirth so many of us know indescrible pain. Surgery pain is different but there are excellent drugs and if you've ever broken a limb, well you are partway there. If you read the journals closely, we aren't complaining of horrendous pain forever, are we? So, in the end, you can handle the pain.
I know so many people in my own community with mitral valve prolapse and lucky me, I'm the only one that needed surgery. Ain't life grand?
Gee, better stop while I'm ahead. Really pontificating tonight. There's a twenty-five cent word!
How very sweet for you to write such kind words. I've read all of the postings you've written and I think you are wise beyond your years. There is a real message in corresponding with the other HV patients, caregivers and families and that is it is never too late or early to learn.
My husband and I take a totally different approach to things such as this. Peter would rather be surprised because he doesn't think he can handle the anxiety of knowing. Me, I want to know all there is, ask questions and be part of the decision making. I always say I don't like surprises and I can learn to deal with what I know even if it isn't pleasant. I say I am a realist. Years ago when I was much younger I suffered some anxiety attacks over my failing heart valve but that was before I knew what was going on. Once I was let in on the secret, then I became to accept how I felt and learned to live with it. I went for my annual tests starting in 1994 and last spring when I was told it was time, my stomach did a flip. Accepting did I say? Well, I then had to learn to accept what was going to happen and I did.
Don't rush it and while you have fears of what eventually lies ahead, don't let it interfere with your life and that of your wife's. Be diligent but don't live your life as if it's coming to an end when in fact, it will be just beginning. When your heart is ready - the doctor will let you know and in the meantime, you will have learned a whole lot of great information here and be totally ready. And you will have made more friends.
I will pray you have lots more time before your surgery. Every day the doctors are leaning something new. Cheers.
Patrick - I have two sons, one 37 and the other 35. I'd be sick to know either faced a surgery such as this so while I can handle what I must for myself, I might be writing a different story if it were my child, daughter-in-law or grandchild. I do see where each of us is coming from when it comes to facing our fears, I really do. However, I am obviously older and have lived a little longer so perhaps that is just part of my being able to accept something for myself differently than I might for my family.
I happen to be a nurse but that didn't help with the anxiety part of it. When we moved to FL a year and a half ago and I was referred to a cardiology practice, I asked the nurse which of the 3 doctors had the most laid back personality! That's the one I chose and my visits to him did not make me nervous. When he finally told me last fall "that it was time" (time for surgery), I didn't flip out. Actually have been very calm about it all. I was referred to the Cleveland Clinic and Dr Gillinov (did you get in on his conference call a few weeks ago)? The hardest part has been learning in early January that my scheduled surgery wouldn't be until March 18th! So, God is teaching me more patience! Keep posting, there's lots of us out here who care.
Hi Patrick. Welcome to our Journal Central. You will find much in the way of support from this group, and I'm glad you've chosen to join us.
I am having surgery on Friday, and I worked out over and hours today...cycling and weights. I do get a little short of breath once I reach 80% of my maximum heart rate, but otherwise I've been fairly asymptomatic. Keep working out as long as you can. It will benefit you in the end.
Everyone is different, and some people experience a lot of symptoms while others don't. You just have to trust your cardiologist to let you know when it is time for surgery. I'll be following your entries. Just know that we are all here for you!
Your journal entry was a relief to me in more ways than one. People look at me and ask "How can you have a heart problem when you run?". I sometimes ask myself the same question, and then sitting here at my desk at work I feel light headed and I have trouble breathing... reading your story lets me know that I'm not alone.
Nice to see your journal entry. Feeling anxious are you? We've all been there. Mostly these things take years to develope to where surgery is needed and so far you are sounding as if you are a ways off. Thank goodness for the medical tests though and naturally, as we all knew what we were dealing with, facing the day of testing was like going back to school. Good idea to move your testing up and I'll pray you squeeze through another year and land that job! With any luck at all it might be years yet for you. Heart palpitations and sometimes the shortness of breath are frightening things to deal with and are natural causes for the anxiety we all feel. Drop over to William Thune's journal for a laugh when you need a pick-me-up. If you need prayers, and we all do, write to Pastor Duane Hunt. He is very funny and inspiring. Cheryl, Ontario
Hey Patrick, nice to meet you and read your story. I have had a very similar background to you. The symptoms of my aortic insufficiency have been slowly progressive - they started about 2 or 3 years ago just during workouts. Your body should let you know when it needs to rest. I was in the same boat as you with the anxiety before every annual echocardiogram - I always worried what they would say. I have noticed that it can be common to say having valve disease effects you physically and mentally because of the anxiety.
Hang in there, I'll be following your story. Best of luck and God Bless.
Trevor - Rockford, IL
Welcome aboard a ride none of us wish to be on but we all thank God for the medical advances in this field. Perhaps one of the first things you might want to tackle is your phobia to needles. Hopefully someone out there knows a way of getting that phobia under control and thank goodness you seem to have a little time on your side to start. You'll have lots of support here Patrick. We all need support. Good luck. Cheryl, Ontario
Hi Patrick: You know both your parents are praying for you. Our prayer is that there will be a non-invasive surgery technique that is developed by the time you might need a new heart valve. Of course we also pray for God's healing in this matter so that you will never need a new heart valve. God is in charge no matter what.