Wow - 2 years ago today I was under for the biggest change of my life. Everything went well that day and into my recovery and still goes well today.
I am enjoying life and have slowed down to appreciate the small things. My 4 boys (all under 7) are keeping me busy.
I am also reflective of the time leading up to my surgery and those that helped ease my fear. This site was really a big help in putting me in touch and building those connections where people were open and honest and I could also share my fears while not over worrying my family.
I really hope that others are making those connections as I and others did.
For those waiting - Please let me know if I can be of assistance at all.
I had my one year follow up with my cardiologist after my Echo a few weeks ago. His words "Everything looks perfect - We will see you next year." I am ok with these short and sweet appointments after years of constant checking and following. By BP was also perfect which before the surgery was not the case.
Things are going well - I still get some numbness around my incision area but nothing that I should be alarmed about.
The family and I are enjoying summer - My oldest started tackle football this year. I have two of my boy’s school this year (2nd grade and Kindergarten). My third starts pre-school and my 4th will get some much needed one on one time with mommy.
As always this site continue to be an outlet for others like us to connect and form bonds while allowing family and friends to understand us a bit more. Thanks Again Adam!!
Hope the rest of the HVJ family is doing well and for the newbies let me know if I can help answer any questions you may have.
Ty Charles Johnson was born on 4/11/2013 at 1:17 pm. He was a little peanut at 4 lbs. 10 Oz. He was 2 weeks early. Photo has been added. Everyone is doing great.
With our family medical history (bicuspid valves) the doctors wanted to be safe since my 3rd son was operated on at 6 weeks old with a Coarctation. Though Ty has a bicuspid valve he looks good. They are not concerned. They also checked my other 2 boys and they have normal valves.
Life has really been exciting this last year after my surgery and I am overjoyed to know that the next 12-18 years will be crazy/fun/challenging but most importantly there will be a next 12-18 years and beyond.
Wanted to share the great news with my HJV family..Now if I could only get a little sleep..haha
At this time last year I was under getting my valve replaced. I had family and friends supporting me and the best doctors in the area. Was I scared? Absolutely..But it had to be done. You will hear this many times on this site but as I reflect on my experience the waiting was the hardest part.
I won’t go into a long drawn out reflection story. I will just say my life is moving forward with other things now that my heart is not my primary concern. I focus more clearly on my family and job.
It has been a great year. We are expecting our 4th child in April. Another boy..4 boys wow. It's exciting to thing about life in the longer term vs. short term.
There are so many people on this site that help me before - prayed for me during and encouraged me after.
Adam, Thank you somehow doesn't feel like enough with what you have created here for folks like us to connect. But I will say a whole heartedly THANK YOU!!!
Please let me know if I can help anyone out there that has just found this site or if you are in the waiting period. I will answer any questions you may have.
AVR 2/20/12 - One year down..Many more to go
It's almost a year since my surgery. I remember this time last year as this was the time I found this site and my life and courage changed. I will forever be grateful!!
My heart is looking good and BP is also good. My son who has surgery when he was 6 weeks old for a coarctation is also looking good. He has a bicuspid valve but at the moment the gradient is looking good. We know that if he has to do something when he is young we will go ROSS but we are hoping that he can live a long time before needing anything done.
Our little bun in the oven had a prenatal echo done the other day as they want to be cautious and his heart looks awesome so that was relief. Now we can focus on April with thoughts of 4 boys OH BOY instead of worrying if his ticker is ok.
We have returned to a normal routine. My Older boys 6&5 are asking about why Conor and I have the same scar but they are like he's faster than we are so he's ok..Gotta love kids.
The benefit of this site is it never stops giving. I will come back from time to time to read the words of encouragement I got and offered and I am reminded that I had my chest cracked open. I am pretty sure I can handle anything.
Its great seeing people still helping those that are about to go through the journey.
It's hard to believe that it's almost 9 months since I had my surgery. I don't really have much to report health wise and maybe that's the biggest thing to report. All is well and I still feel great. I have even noticed that my scar is starting to lose some of that purplish color it had.
I have been busy with work and my family. As I reported last time we are expecting and will find out what we are having in a few weeks. I will be sure to come back and share that news. The doc said on our last visit it looks like a boy - that would be 4 boys - OH BOY.
I have also been coaching my oldest son in flag football. We have the playoffs this weekend so he is excited about that.
I am really excited about the holidays this year as it was this time last year when I got the news that the leak had gotten worse and surgery is more than likely needed. So it will be good to just think about family and friends with no added worry stuck in there.
So thankful for all those on here that stay in touch and continue to share their lives.
AVR 2/20/12 - I feel better than ever
Time really does fly. It's been 6 months already. Please ask me all the time so has life returned to normal and I tell them no. It's better than normal. Before my normal was worry (when/how/why). And now it's just doing Running/Swimming..not thinking about it. I am reminded of it every day when I see the scar. But it doesn't remind me of what I went through but it reminds me to thank of what I will do. Life does get better. You will feel better...People will not treat you differently. You can do this!
The big news. My wife showed me a picture of my youngest of the 3 boys. (FYI - Valve Replace surgery will do a lot of things for you but the one thing it doesn't do is make you smarter!). I must have looked at the picture for 5 mins and she was looking at me like "do you see it yet?"..I looked at her with help in my eyes and she said "look one more time at everything." So I did and then I noticed it. He was wearing a T-shirt that says BIG Brother. Boom..We are going to be parents again for the 4th time. The 1st thing after I hugged and kissed my wife was please don't let this be twin boys..Haha.
This Life is wonderful and again I thank Adam for sharing his experience and for creating a site for other like me to talk and become a family of Valvers!!
Jimmy Johnson - AVR 2/20/12..OR DID I?...doesn't feel like it..
A good friend of mine from college passed away last night from a heart attack. He leaves behind a wife and two young daughters. It just has me thinking about everything I have gone through this year with my surgery and how fortunate I was to learn of my condition and keep an eye on it and take action to fix it even though I was scared out of my mind.
It just put in perspective for me how lucky I am to still be here. My heart goes out to his family and his community as he was an Indiana State Trooper and one of the truly good guys.
With my new lease of life I am still humbled when I hear of someone passing so soon and particularly when it has something to do with the heart.
Before my surgery I use to think that once this is done I will never say anything or let anyone know because I don't want to be looked at or treated differently. But, I find I am not ashamed and I feel like a warrior who went through something that challenged me physically and mentally. I did it with Pride..Patience..Humility..and Will. In the end I did it because I wanted to not because I had to. I wanted to show my boys that sometimes in life you will be faced with things that are hard and scary. Rely on family and friends (so many that I met on here) and ask for help and tell them what thinking and feeling. Can they relate - no - but, they can listen and hug you and let you know that you are not alone. That was what I wanted to show my boys..Yes, I am afraid..No I don't know how this will end up but it's okay to be afraid. It's okay to need help and let others be brave for you.
I find myself just staring at my boys and feeling grateful that I have the opportunity to see them reach major milestones in life and I am overwhelmed.
Sorry this was long winded and rambled but thinking about my friend and feeling sad but also feeling very lucky and I wanted others to know I know I am lucky.
It's hard to imagine that I would feel this good 20 weeks after a life altering experience. I just had it built up in my mind that life would be horrible and I would be less of a man so I just tried to ignore it or make believe it wasn't happening. Then I found this site where I could read the same fears and concerns that other people "like" me were having and would understand. I opened up and shared and what came back was AMAZING. I made connections like Mitch/Greg/Nancy/Janis/Jane who blazed the path and shared experiences and thoughts openly for me to decide my best course of action. I also made connections of people Like Chuck/Stephanie/DVB/Jeff/Chris/Nancy and countless others… That would go after me and I hope I was able to help.
I am feeling really good in Body and Mind. I am exercising like I never did before. I eat healthy (though I still like my burger every now and then). I find myself looking at my kids longer in amazement of the people they are and I am over joyed in now having the opportunity to be amazed at the people they will become because I will still be "ticking".
To use a movie reference with the New Spiderman movie that is out..I feel like I live everyday with my SPIDEY senses in high gear. Things slow down for me and I see them more clearly and feel so connected to what is happening around me and I appreciate it.
My 39th birthday is 7/21 and that is how long I have been on this earth but I really feel like I have been "living" the last 20 weeks. Not sure that makes sense to anyone.
This site is one of the greatest things that has happened to me and I hope others can get out of it what I can. It is sad to see all the newcomers because it's a scary reminder of how prevalent Valve Disease really is but with a family like the HVJers it makes it easier to face with humility and hope.
THANK YOU for those that help me and for those on the side that I am - I hope wish you all the very best and for those just starting or getting close - you are not alone - we know what you are felling and thinking and I can tell you for most of us waiting really is the hardest part.
Let me know how I can help any of you - Please don't hesitate to reach out and i will share my phone number and e-mail address and will take the time to listen and tell you about my experience.
Jimmy Johnson AVR Bovine Tissue Valve 2/20/12..MOO
I had my 3 month post op echo today. Got the call that heart has returned to normal size and my ejection fraction has returned to normal range. This important because at at my 8 week follow up everything was still the same before surgery and doc wasn't sure it would get better. My ejection fraction was in the low 40% range and that is bad. But not anymore.
To answer Stephanie's question of is it really normal... My answer is yes. Today feels like a rebirth for me. The doc said in July he thinks I will come off the toporol and the lisinipril. That is amazing to hear.
I am running 2-6 miles a day 5 days a week. I am playing intensive basketball once a week. Life is good.
Now I truly appreciate everything. My boys and I have so much fun. Took my 6 year old to see the Avengers( best movie ever). Ready to go camping and vacation. I am really thinking of the future with hope and excitement.
I really have to say my friends and family on here are really and truly awesome. Please keep recovering and living life. For those about to go through it you should lean on the people here. We are here to help like those that helped us. It's scary but not that hard of an adventure. Ask for help, except help, don't feel helpless.
Good Luck... Great surgery...awesome recovery...priceless life!!
Still doing Great. It really is starting to get to be a nonevent. Only thing is nagging soreness in my chest muscles. I haven't started lifting as of yet. Still running so I am wonder if I slept funny or it was me throwing the baseball with my son. Dr's don't seem to be too worried but it's a nagging uncomfortable pain that Tylenol doesn't help with. Called my Primary DR and see if he can help.
Anyways - I am happy that there are so many good updates from folks: Chuck/Mitch/Stephanie/Jan/Linda/Chris/Jeff..Keep on getting stronger
Hard to believe that 9 weeks ago at this time I was eating broth getting ready to move out of the ICU to the step-down unit. I have to say Thank You to DR. David Andrews at the Presbyterian Hospital uptown Charlotte and to his PA Buddy for making sure I came out on the other end stronger. I would also like to thank all the Nurses that made sure I well looked after and comfortable. It really is "Remarkable Medicine, Remarkable People".
I feel so good these days. I had my best workout last night as I was able to push hard and run hard for a long long period of time and it felt great.
Getting less and less soreness and tenderness in my chest area. This is my 4th week back to work and I am finding that I get less tired midafternoon...
I really do think I am 95% or more back to normal. But not my old normal. My new normal..
It's awesome. Really the waiting is the hardest part.
In short while in the hospital...
Breathing Tube - won’t hurt. Might not even notice it
When you weak up you won’t feel pain
Chest tubes don't hurt. Just feel weird coming out.
This is what hurt - not badly or for long but to be candid it did hurt but you can manage it.
Catheter coming out...Ouch
Pace Maker wires coming. Really ouch but for a few seconds only.
This is something you can do and get through. Use this site for encouragement and support. I did and still do. This site really was a life saver for me from an emotional stand point..
Good Luck HVJers!! Life is good!!
Jimmy Johnson AVR 2/20/12 (Bovine Tissue Valve) Moo..
Life for me has returned to normal..My new normal where I have a high energy level and I am working out 5-6 days a week. Not only do I stop to smell the roses but take a picture of them so I may look upon them again..Haha..Seriously, I do enjoy life more..I have slowed down and say hi to more strangers..I find I am not in a hurry anymore.. My body has recovered so nicely. I feel stronger and less fatigue. I am still waiting for I start lifting weights, after all I did go through a traumatic experience so why rush it.
Going back to work hasn't been too bad. I find that I wish I was still home..I have been able to settle in nicely and get back into a good routine. After about the 3 day you are a little over going through the entire story again but I its nice people are concerned and ask about you.
My son's 6th birthday is this weekend so I am looking forward to that. We do Birthdays up in our house..He wants french toast and gummie savers for breakfast. After his baseball game he wants 2 Dorito tacos from Taco Bell. For his Bday dinner he wants NY style pizza from our favorite pizza place Tony's Pizza with Orange and Lime Sherbet on the side.
I don't think too much about the surgery or that I am in recovery until I make a sudden move or a stretch that reminds me. I have for the most part gotten back to living my life.
I still come here often to see how folks are progressing with recovery and offer help to those about to go through the it.
Hope everyone has a fabulous week..All this talk about Pizza and Dorito Tacos has made me hungry..Time for a snack.
Saw the Cardiologist today. Visit went well. No Echo as I will go back in 6 weeks for that. After that visit they will look at all the numbers and look at my EF and determine if I can come off the Toporal and Lisinapril. Doc said it was looking like a good chance that could happen. Heart sounded good today. He said I looked good as well.
So May 24th for the Echo and July 19th for the next follow up.
Going to start working on sleeping lying flat in the bed on less pillows. I am still sleeping propped up a bit.
Ok..That's all I have to report for this update. Hope everyone is resting and recovering well that needs to and staying calm if you date is approaching. You can do this!!
Things are still going great. Last week was my 1st week back to work. I only worked to about abut 2 and then I headed out. I really underestimated how tired I would be at the end of the day. At least 2 days last week I was in bed by 7. This will be my 1st full week (reg hrs). Let's see how that goes. I could also be tired because my walks are now later in the day when I use to do them early in the morning.
I will occasionally get some soreness and stiffness but nothing to terrible. I find that my ankles/Knees/Lower back/Wrist ache a bit. Not sure if that is my body adjusting to less medication or just tired from working most of the day and then going on walk runs in the late afternoon.
It's so nice to pick up my youngest son now. I pick him up and he wraps his arms around my neck and puts his head on my shoulder and just relaxes for the longest time. It's awesome. My older boys are still a bit to heave for me to pick up but they have no problem climbing into my recliner with me..haha
We had a great weekend. My oldest son will have his 6th Birthday in 2 weeks and my Wife's Family is coming in for that. Let's see how I do with that many quest and in-laws..haha.
Hope those that are recovering are doing so well and restfully. Those about to go let us know how we can help. Everyone's experience is different but we that have gone through are willing to answer any question we can.
I am looking forward to a great 2012..I am actually ready for the Holiday's..This past year my mind and heart was heavy with knowing what I was about to go through. Now I want to experience them with my new lease on life.
Got the all clear to start driving and return back to work. He told I could do what ever I wanted but follow these 2 simple rules.
1) if it hurts don't do it
2) if I get tired...rest
Told me to skip rehab as it would be a waste of time and money for me.
The chest exray looked great and all my vitals were good. When I 1st saw the surgeon my resting heart rate was 108. Today it was 66. Surgeon also listen to my heart and said it sounds perfect. No murmur.
I will start back to work on Monday. My boss and his boss have already called me and said no more than 4-5 hours a day my 1st week back.
I am going to start walk/run workouts tomorrow.
Had my 1st sneeze last night - held out a little over 5 weeks post op. didn't hurt so that was good.
I can't tell how much this site and the people on here mean to me. No judgements. People shairing personal experiences and fears with others. I felt like I knew everything that I could expect preop and post op.
Thank you my HJV Family!!!
I may not post weekly anymore but I will continue to post updates and check in regularly to see how friends are doing and hopefully continue to make new ones that I can help and support through their journey!!
All is well. Up to 4.5 miles a day walks. Sleeping better.
See the surgeon on Thursday. He should release me at that point. I feel great.
Our CEO is in town and the local managers are having a leadership dinner with him. Though I don't go back to work until next week I am going to go to the dinner tonight. My question is I wonder if it's ok to have a beer or wine with dinner?
How long after surgery did others wait before they had a cocktail?
I am not on any meds that could react with alcohol.
Its been 3 weeks since my "v" day. I am doing well. I am walking a lot very day. I still get days where I am tired and I have to nap and rest. But for the most part i am doing really well.
My blood pressure has ravaged from 104/60 to 122/68. That's as good as it ever has been. I hoping that I won't have to take any mo bp medicine.
My pulse usually rest in the 70's. It was in the 90's prior to surgery. It does dip into the high 60's on occasion. Not sure if the 70's are still high.
I have lost close to 20lbs. Few lbs before the and mot after. My appetite is good. Must be all that walking and the fact that my portion sizes are a lot smaller. I just can eat the amount I use to.
The incision scar looks good. I get more flexibility and mobility every day.
Sleeping is still some what of a challenge. Maybe one to two hours and then up and back down for one to two hours and up again. I follow that cycle tille about 630 and a that's when my kids are up to get ady for school. I go down and have breakfast with them. I am going to move back into my bed instead of the guest room. Now that I am mo mobile I can get in and out of my bed. Plus it's memory foam and much more comfortable. I will let you know how that works.
I go see my surgeon on 3/29 where I expect he will release me to drive and return to work.
My son started tball this week so that gets me out of the house. I go have lunch with coworkers once or twice a week.
Hope Stephanie and Linda have a great surgery and and a fast recovery in cleveland. I know they will do great!!
Nancy is on fire with her poems.
Glad to see Chris and Jeff doing well. Hope Chuck will also have a good go when his time arrives.
Glad to see Mitch doing so well as well as Janis and Jane and all the countless others that have supported me in my journey.
Jan - its so good you are home and doing well. I agree that people in the south should really look at Dr Andrews as he is top notch. Plus the care we both got in the step down unit. We were lucky huh?
All the newbies to the site. You are in great hands here and you quickly feel a part of a bigger family and people genuinely do care about you
After my morning mile I felt like I had a bit more so I took my boys on a slow walk and we made it another mile. Now I am sure I will rest a bit tomorrow. Don't want to over do it.
I had been to doing pretty well with pain until my wife punched me in the chest last night. It was an accident. She completely forgot and she got excited after I was explaining kicked in and she punch me. It didn't hurt to long.
Really finding it harder to sleep. My back and neck hurt. I feel like I am pretty mobile at this point. Feels more muscle pain versus the chest. Wall.
Sending big positive thoughts for Jan who has her surgery in the same hospital and surgeon that I had so I am certain she is in good hands.
Glad Chris is doing so much better. Big scare for a minute.
Linda/chuck/Jeff/Stephanie. Not much longer buti am certain you guys will do great. You have the right attitude and you all seem as mentally ready as you can be. I will continue sending positive thoughts. My mantrain the hospital was "eye of the tiger". I hummed that as I walked ny 1st laps until my very last one.
Wow. Few weeks it was hard to imagine myself here and what it would be like. The surgery and hospital stay wasnt really that bad. Other than a low hemoglobin count that made me dizzy for a few days not bad at all.
Now I am home with the family. When my boys saw the scar the my oldest said that doesn't really look to good daddy ( that aft a week of hearing how good it looked). My middle son could just muster up that my belly button looked funny ( nothing was done to my button - it looked the way it's always looked)
Still trying to avoid lifting heavy stuff. I find that it gets easier to get dressed as well as shower.
Doing my walks. We go to the mall or target to walk if it's raining outside.
Still sleep like 2 hrs then up a bit and then sleep for 2 more hours. The soreness and muscle aches are kicking in.
Today the at home nurse starts coming over every other day for at least 2 weeks.
Again thanks to ALL my HJV family for the support and kind words. It really did and continues to help.
It was nice coming home to all the photos and get well letters my boys wrote me. The recliner has been the area where I am the most comfortable. Though I can't put the foot rest down with out help.
I did sleep in the quest room bed lest night and it's low and easier to do the hip walk to get in position. I used a wedge pillow propped up on other pillows to get angle I needed. My boys slept in the room with me.
Took laps inside the house and now that's it Warner heading outside for a walk.
Jimmy's doing so well! I'm so proud of him. He's such a champ! He makes this look easy. He took a lap around the hall pushing a wheel chair this afternoon and they were going to do it again tonight. I have to come home in the evenings to take care of the kids and take them to school in th mornings.
Sorry for the little update before, the dr was calling me back.
He had a really good surgery. No complications so far. The dr and his PA were very pleased with the outcome. They're hoping his breathing tube can be pulled by about 4 today, but they of course won't rush it.
I had my preop appt today. Whoa..information overload. Plus all the other stuff they had me do was a bit overwhelming. But it hit me there while I was waiting for the next person to come in to poke me or stick me for blood that this is real...
But then I remembered why I am doing this and told my self that I can do this..(in my head I heard the intro to "Eye of the tiger" and I almost let out a "Yo Adrian I can do this"..haha. I really did feel in good hands with all the folks at the hospital and all most every one that I came contact was like Dr. Andrews is the best when it comes to valves. That made me feel really good.
So now I am just going to relax and enjoy the family until I have to be at the hospital Monday morning.
I will probably get one post in by then but in case I don't it will probably be 130ish Monday afternoon before my wife can post an update.
I really appreciate all the support and calming voices on here.
1st let me say thank you and best wished to Mitch/Nancy/Robert. They have all gone through the surgery and are on their way to recovery. I am giving you guys a standing ovation and now my co-workers are looking at me funny.
I really appreciate you guys and all the others..Jane/Janis/JH and many many others. That have shared your stories of the pre and post op journey. Each one different but no less valuable to me and the countless others that are also embarking on this same journey. Thank You
To my friends still in waiting..Linda/Chris/Jeff/Chuck/Stephanie/Cindy and countless other. Thank you for sharing your fears and courage. Thank you for all your questions and answers to all my questions...
This site has really done more for me that I could have ever hoped for. I find myself coming here all the time to see how people are doing and what help I may be able to provide. I am sorry if I did not mention your name but everyone on here is just plain ole AWESOME!! Thank you!!
I have been sleeping well and pretty distracted but when I do think about it I find most of my thoughts are really around on what I want to do in life after. Laugh more..Cry more..Read more...Slowdown...try new things...
I worry that I may not be giving the surgery enough thought or the recovery. I think it just makes me feel better when I think of the other stuff.
Anyways...I am just going to enjoy the weekend and head into my last week of work and one more weekend. Thanks for letting me rant for a while!!
Just making sure the house is ready for when I come home. Starting with the kids to make sure toys are picked up. I have 3 boys 5 and under a they have a lot hot wheel cars that I don't want to trip on. Have a good support group. Several folks have lined up bringing meals over the 1st couple of weeks and that will be a big help.
My middle son said he was going to draw me a picture everyday I am in the hospital because I am his best friend. Really does put everything in perspective on why we do this.
Trying to do everything I can with family, hugs/baths for the boys/holding them because I am sure it will be several weeks before I can get back to dong that.
At least I won't have any lawn work for a while.
Ok got to get started on our Super Bowl food for later. I really have to end with what an amazing wife I have. Soon she will have 4 boys to look after and I am sure I will be the biggest baby of them all. Lol
Thanks every one. It really wasn't as bad as I thought it would be. Hurt when I was stuck for the Iv and then for the numbing stuff. Was quick.
Worst part was lying there for 2 hrs. Couldn't really sleep cause nurses kept coming to check on my wound.
Results were everything else looked great. My arteries are wind open.
Now just need to rest its a little sore. Count down is on to my surgery 2/20.
I am in the it's right around the corner phase not thinking about it too much but starting to think about it more and more.
My family helps keep me grounded and distracted.
I have my Catch and my fellow HVJ buddy Linda has really helped ease my mind on that one.
Question for the folks that are in Post OP or about to have the surgery. Is there a list of things I should do or think about to get ready and to have for when I come home from the hospital? I have ordered Adam's book and it should get it any day. I have my Pre OP apt on 2/15 and I am sure I will get more info then. I just wanted to start early as I have 3 weeks until the big day on 2/20 at 8:30 am.
Thanks for any advice or suggestions you may have.
Surgeon agrees with the other doctors that my leak is severe enough that it needs to be done sooner rather than later. Working on the 2nd op asap but think I know the answer will be the same.
Really like this guy..DR. Scott Andrews.. He is one of the top 73 doctors in the country. He answered all my questions. He walked me through the echo. Was very assuring and was candid about the risk. Gave me the pros and cons to mechanical vs. tissue. Said in 15 years it's highly likely that this would be done via cath. So the tentative date is set for the 2/20. They need to shed a heart cath to check the arteries.
The reason is say tentative is I had a business trip sched the week of Feb the 13th. I am going to maybe cancel that and go sooner.
I am having the surgery done at Presbyterian Hospital in charlotte NC. It's a top notch facility.
Doc said he we will fix you up so you see your kids grad HS/College/get married/have kids..Basically I see no reason you won’t live to be an old man..That was comforting.
Ok..This has gotten really real. I am ready..I am ready..I can do this..I can do this..I will do this..I will do this..Bring it ON!!