I had terrible pain and stiffness in my upper back and shoulders starting in the hospital and lasting around 4 weeks. I think it's pretty normal.

Glad to here Danny's recovery is going well.

Ricki Shine

Hang in there Danny. You are doing better than you think right now. You're bound to be sore from everything you went through. You are doing so wonderful. Love you, Aunt Jackie

Hi Danny & Mary
I believe some of the discomfort is from the reasons you stated and also perhaps the positioning of the body during surgery. Warm, moist heat and gentle massage may help. That's what helped me, but it did take a while. Keep moving and smiling and lots of fluids.
Fran

Hi Danny & Mary
Can you read your pre op posts to remember how worried (and rightfully so) you were? Am so glad we, here on the journal were able to help both of you through this stressful time. Sounds like you are doing so well, keep it up.
Fran

Hi Mary & Danny. Mary, thank you for the encouraging note in my guestbook. I too feel all will be well with my upcoming surgery. Danny, it is great to read that you are doing so well with your recovery. My best to you both - Joy Vera

Hi Mary and Danny

The use of the spirometer is important in helping to open up the lungs and get the air flow moving. It's not how high you get that little ball to go - it's how steady you keep the ball in the mid zone. It takes time to do that. It takes a long breath to hold the ball steady. Use it about 10 times in a row every hour.

Good air flow also might help reduce the fluid in the lung. I eventually gave my spirometer to my mom who has asthma and she uses it all the time now.

Cheryl, Ontario

Hi Danny,
Just wanted to say Hi and let you know you are in our thoughts everyday. I am so glad that you are doing so well. I just want you
to know that don't get discouraged recovery
takes time and some days are better than others. All our love, Uncle Barney and Aunt
Charlene.

Hi Mary and Danny

He certainly is an amazing son but I'm sure the apple didn't fall far from the tree. Mark pretty much covered it - keep him walking and using that spirometer. That toy has to be his very best friend for the next couple of weeks - absolutely.

I believe you when you say you are exhausted - that's just how all our beloved caregivers feel. You are giving such a gift to Danny but if you get sick, who will be looking after you? Do try now and relax a little. If some blurp in the recovery shows up, just be aware of what to look for and make a call. Don't be shy about calling the hospital and doctors. Just bear in mind we've all made it through these little things that crop up so try not to get too anxious. He's young and healthy.

My internet has been giving me trouble these past few weeks and I had someone working on it all weekend so now hopefully I'm back and running.

Keeping you all in my thoughts and prayers.

Cheryl, Ontario

Hi Danny,
It was wonderful talking to you this morning.
I hope you "really" are feeling better and glad to be home.You are a "trooper"!! Maybe Aunt Charlene and I will come and see you tomorrow or the next day, if you and your mom are up to visitors. I will definitely call first. Take care of yourself and I hope you're catching up on your rest!!! Love, Aunt Jackie

Hi Danny,
So wonderful to hear that you are at home!
I'm sure you are glad to be in your own bed
tonight. Get rest and take care and before
you know it you'll be feeling better.
Love you,
Aunt Charlene.

Hi Mary & Danny
I think you get the award for the quickest discharge. I agree it is pretty amazing what can be done. I agree with everything Mark wrote. You have the benefit of having a daughter who is a nurse, so let her knowledge calm you. After a good night's sleep all will be easier tomorrow. The real healing begins at home.
Fran

Mary and Danny,

As you read through our post surgical journals you will find, almost without exception, each one of us had some little; or not so little, post surgical complication or side effect we dealt with. I was ready to check out on day 4, but had pericardial effusion (sfluid in the heart sac) which had to be monitored and kept me in 7 days total. I had echo's daily and they do take a very long time as they are much more thorough in the hospital than at your cardiologist.

I would venture to say Univ of Mich would not have discharged Danny if they had any concerns. The monitor is just there to confirm their suspicions. I think he will find it musch more restful at home than at the hospital where they are constantly waking you.

You are very fortunate he is doing so well, just keep him doing his spirometer frequently and walking more and more each day..

Best wishes,
Mark

Keller, TX

hi danny how are you doing?i really want to no.i am suppose to do surgey sometime this year and really and trully i dont no what to expect,but you can link me in my jurnal.ok ricardo elliott.

Hope you're still doing well Danny. Love you and can't wait to see you at home.
Aunt Jackie

Hi Danny,
I'm glad to hear that you are doing so well!
Don't show off too much it's okay
to take it a little easy after heart surgery! Ha! Ha! Wishing you all the best.
Love, Aunt Charlene.

Hi Mary and Danny,
So happy to hear the good news......see you made it through! I can not wait to hear you are home recovering.
Theresa

Hi Danny,
I hear you are doing wonderful!! In a private room, talking, walking and going to the bathroom by yourself. (Just like a big boy!!LOL) Hang in there kiddo. I am so proud of you. I knew you would do good, but I didn't know you would set records!! Ha ha!!
Keep up the good work. I know there may be some tough times, but you will "push" through them just like putting a basketball in the hoop!! Take care of yourself. Love you, Aunt Jackie

Hi Danny and Mary
What GREAT news. You'll be out of there soon. Hope everyone will sleep better tonight. It's all good news and recovery going forward. Prayers have been answered.
Fran

Hi Danny,
I know you are relieved to that your surgery is done. I know your recovery may have a few
challenges but you are going to do just fine
because you have already shown how brave and
courageous you are. We wish you a speedy
recovery and please know that you are always
in our thoughts and prays. Love, Aunt Charlene

Day after Danny's surgery: He's doing wonderful. Talking and says he's not in too much pain. Grateful the surgery is over. Kind of rough night but Mary, Aimee and of course Danny, got through it. Thank you all for your support. I know my sister really appreciates this sight. It has helped her greatly.
Mary's sister, Jackie

Dear Danny,
Hope you are feeling better by the time you read this message. You were so brave today and handled what was ahead of you like a soldier. I know the next days will be tough, but then again, YOU ARE TOUGH!!! Hang in there. I love you and I know you will definitely feel better SOON!! Love, Aunt Jackie P.S. Tell your mom to get some rest!!!

Hi Danny,
Not sure if you got my last message.
Computers are not my strong point!
I just want you to know I am thinking of you
and love you very much.
Aunt Charlene.

Hey Danny and Mary -

I have been thinking about you as you are closing in on the time of surgery. I'm not sure if Danny was able to read Adam's book or not but I am recalling the night before my surgery. I listened to relaxing music and read the section in Adam's book "the night before surgery". It really helps you stay calm. When you get up in the morning, have a confident and cheerful additude. Stay with Danny as long as you can. Make sure you have some fun with the staff there - it really helps the anxiety to laugh and smile a little before getting wheeled back.

When Danny "wakes up" - tell him to remain calm, try to relax, and remind him that he is doing great. I remember hearing my family before I was able to open my eyes and it brought so much joy to me. The breathing tube is somewhat uncomfortable, but it is tolerable. It will be tough, but he HAS to initiate breathing before that thing can come out. Make sure he has enough pain meds. Have a notepad available for him to write at first. When the breathing tube comes out - it feels great until the thirst comes. If there was one complaint that I had is was that I was thirsty all the time. Ice chips felt like heaven, feed him plenty. The spirometer hurts at first, but it is extremely important. Do whatever you can with it as your SPO2 levels will be proportionate with that. You are not going to want to, but cough when you do this too. If Danny is in too much pain, never stop asking the nurses if he could use a different medication. I went through 4 or 5 before I got the pain controlled. My last bit of advice for you is to just simply act as a patient and let the staff do their jobs. They are highly trained people and they know what they are doing. Let them take care of you - its what they like to do. Good luck to you Danny and I KNOW you are going to do great. You will be the highlight of the cardiac floor this weekend! Again, Mary, if you have any questions don't hesitate to contact me or anyone else on here. We'll help you through every step of the way.

God Bless,
Trevor Nelson
Rockford, IL

Hello Danny,

Just wanted you to know that you are in my thoughts and prayers. You will be ok, know that God will be with you. As for your family, I will pray for them as well. The best way for them to help you is just by being there. It will all fall in place. Remember the hospital knows what is best and they will help you along in every way, just be patient and let them! I look forward to the updates.

Melany, NC

I know that things will go good tomorrow for Danny and you. The following are things I learned while in the hospital:

1. Note pad to write on while intubated. My wife was the only person who could understand my writing on my thigh.

2. Tell Danny to relax as he is waking up. There will be so much going on in the ICU and he should just go with the flow. The PAs and RNs have been down this road before and they know what to expect. Get him ice and water as soon as they let him have it. I was drinking ice water about 45 minutes after being extubated and Sprite probably one hour after that.

3. Tell Danny the time. When I woke up that was the biggest question on my mind besides knowing that everything went well. I woke up so I guessed that it went okay.

4. Be ready for Danny to look swollen and with IVs coming from his arms, wrists, neck and chest tubes around his heart.

5. Stay with Danny as long as you can prior to going into the OR. It will make you both feel better.

6. Keep your humor. After I was in the OR they asked me what I was there for and I told them I was pregnant without missing a beat. We all had a good laugh before they gave me something at 6:30 am to help me relax. I woke up around 8:30 pm.

7. Encourage Danny to use the spirometer. I used it but not enough and had problems keeping my O2 sats up. Also, expect him to cough up some bloody mucus at some point after being extubated.

8. WALK, WALK, WALK. Walk as much as you can stand. It shows the RNs and docs that you are serious about getting better.

9. Let the staff do their job! You are paying them to take care of Danny so let them do it.

10. Don't worry. The doctors and nurses have done this procedure before--hopefully--and they know what to expect. For most people this is their first time and they are anxious and the staff knows how to handle anything that comes along.


I know this is long but hopefully it will help you guys over the next couple of days. You are in our thoughts and prayers.

Tim from Greensboro NC

Mary,
It's going to be OK and your son is going to be better than ever. Nevertheless, I will say a prayer for you tonight, and for your son, too.

I just had valve surgery less than 3 weeks ago. First of all, it was MUCH easier on me than my mother. I'm 44 and my mom was a WRECK. The hardest part for me was knowing how much I worried her. I know this is the impossible, but it will help your son if you appear calm. Well, there's a tall order, I know, and I'm a mom as well and know I could never appear calm. OK, do the best you can :)

Here's what I would've liked upon the wake up: the ventilator was down my throat and I couldn't figure out how to breathe with it. It was a new experience and I would've loved somebody saying something like, "Amanda, you will feel the air being forced down your lungs. I know it's not the best feeling but try to breathe at the same time as the machine does." Footnote here, I don't know if that's a correct direction but it was an example. I just would've liked somebody talking me through it so get the PA or RN or whomever to give a few encouraging words while on that thing. Second, the first words were how great the surgery went. I don't think I had opened my eyes yet but the doctor and my ex were there telling me I did great and the surgery went well and I know I gave the thumbs up. Even if your son's eyes aren't open, it will be nice for him to hear your voice. Tell him how great he did and how great he's doing. Lastly, dang I was THIRSTY. Swab water in his mouth if it's available. I also loved a cool wash cloth on my head.

It's going to be fine and you're going to be so happy in about 24 hours. The first night will be the worst and after that, everyday gets better. I am a BIG PANSY and I made it through the first night without even crying. Your son will be blowing us all away in the recovery.

I will pray for you tonight and can't wait 'til I hear your next updates!!

Much Love and Prayer,
Amanda F

Danny,

Good luck tomorrow everything is going to be fine. Simon, Tyler and I LOVE you VERY MUCH! I couldnt have asked for a better brother than u. I am trully blessed to have you in my life. You have always been there for me and I intend to be there for you during your recovery. It isn't going to be easy but you will get through it! Every day will get alittle bit better. Your an amazing person and I love u so much!!

Aimee

Hi Mary and Danny,
Good luck tomorrow. I will be praying for you. I want to tell you the first day will be the hardest...all the tubes ...and you will feel so helpless. After all you are his mom and you want to protect your son....when I saw my daughter I had to sit down..it was so hard at first..my husband and I drew strength from each other. when I was weak he was strong, and when he needed to gather his strength, I took over. Remember it will get better...each day he will look stronger and tubes will be removed. Focus on the goal...his new heart and the new life he will have. My daughter is a beautiful person...she has no embarrassment about her scar...she says it is a part of who she is. she is my hero and as I write this I have tears in my eyes because the memory always stays with you, but it is now a positive reminder of how great her life is because we loved her so much but trusted in the doctors to make her well....And they did. My advice is to take care of yourself as best you can...you need to eat and sleep in order to support your son. He will let you know his needs, and let others support you...wherever you need..cooking, cleaning etc.... Remember you will get through this and your son will have a great life. we are here for you.
Good luck,
Theresa Callanan

Hi Mary and Danny
You are in my prayers for tomorrow's surgery and the days to follow. My family held my hand and talked to me when I couldn't speak because of the intubation tube. They reassured me I was okay. They swabbed my mouth with wet swabs when I couldn't drink.They didn't baby me, but were supportive. They encouraged me to walk just a little further and to breath a little harder when I had to use the spirometer. I had asked them to push me if I balked at doing uncomfortable things. But they tell me I was very motivated.I had asked one of my daughters to keep a journal for me during my hospitalization so I could later read about the experience.

Mary, as a mother I do believe you will instinctively know what to do. Just the right amount of love and help but Danny still needs to be encouraged to do things for himself as that will help his recovery. It won't be long before it's all over and Danny will be on to a new, healthy life. Please take good care of yourself during the next few weeks. Rest when he rests. Prayers for both of you from FL.
Fran

Mary & Danny,

Good Luck and you're in my prayers. I'm 5 weeks post op - aortic valve replacement w/mechanical valve. A couple of things to remember that makes things less scary -

Danny will wake up intubated (air tube down the throat) this won't be the most pleasant experience but try to stay calm and relaxed and it should come out soon.

Another thing is that he will have a catheter in so there's no need to stress and fight the urge to use the bathroom. He'll have lots of IV fluids so the bladder will feel full.

Knowing these things beforehand helped me alot!

And Mary for you, when you see Danny at first after surgery he'll have lots of tubes everywhere and may look really pale but this is all normal.

Hope this helps,

Kyle in Montana

Hi Mary and Danny,

Just wanted to add on to my earlier post and ask if Danny has had a chance to read Adam's book prior to his surgery tomorrow? I understand Danny has some frustrations in dealing with this, we all deal with the anger that is happening to us. I knew all my life I would one day have aortic valve replacement, but when I actually heard the words that the time was now, I still had issues in dealing with it. In fact I was aware of Adam's book for about 18 months before I finally bought it just two months before my surgery.

If Danny has not read it yet, I encourage him to download it and read the sections on "Day of Surgery" through the end of the book.

It was tremendously helpful to me knowing what was going to happen and what the experience was going to be like so I could deal with each day in the hospital. I was aware of what the sensations would be like when I woke up in ICU, what the first few hours would be like and how each day would be better than the one before it.

It really sucks that Danny has to go through this so young, but Danny will have a full productive life after this surgery. There are "so many" worse things you could be having major surgery for so focus on the positive that your surgery is on this amazing muscle in the middle of your chext that you can take apart and put back together and make it as strong, or stronger, than it was before.

The next few days won't be a lot of fun, but it will be fine in the end. I wish him and your entire family the best of luck and you will be in my prayers over the next few days.

Good luck,

Mark
Keller, TX

Danny,

Hi, this is Al O'Rear, a long time friend of your Dad's. I know we've met, but it's been a long time. Just wanted to tell you that you and your family will be in our prayers as you take this journey, and we wish you the best possible outcome.

Regards,

Al O'Rear

Danny me boy,
Although the sound of surgery is sometimes spooky I can say this, you are the strongest person I know and you will do great. I truly mean that both in physical and mental strength. I admire you as a young man and of course you know how much I love you. Hang in there big guy.
Love, Uncle Joe

Hi Danny,

We thinking of you and are praying that you'll have a speedy recovery. All our best wishes and love, Uncle Barney and Aunt Charlene.

Hi Mary

I'm 61 and had a mitral valve repair last Oct and managed just fine. While I couldn't imagine doing that strenuous amount of push-ups, I did manage to return to my in-home office 13 days later. I certainly believe Danny's tender age will see him through easily just like Trevor. You must have him read Trevor's journal for inspiration. Read Capt'n Bill's for a good laugh and read as many as he can for knowledge so you are aware of the steps involved.

You all just have to place your trust in the hands of the surgeon and the team that will be working on Danny. These professionals know exactly what they are doing and are fine tuned and precise. Let the doctors and nurses do their jobs and you do yours and Danny his but then work together as a team.

No one here will say it is a painless procedure but most would probably say, in the end, after all is said and done, it really wasn't that bad. The worst pain is surgical day and believe me, you are so out of it, you hardly notice it. The next few days you hurt really good but as the pain meds kick in, you adjust. You hurt but you aren't rolling on the floor. Then it gets better. More than the pain I found the biggest surprise was the weakness I felt and it is that weakness caused by the surgery that becomes the chore to overcome.Danny has to understand that post-op his physical fitness will help and give him the boost he needs to get out of bed and on his feet and walk. Danny will hopefully challenge himself to walk a little further a little faster each day.

I shall be watching Danny's journal and keeping you all in my prayers.

Mary, you will have your work cut out for you post-op keeping Danny motivated so know when you need a rest as well.

If I can leave you with any positive thoughts I would like to point out - if your son had to be diagnosed with anything major, thank goodness it's a repairable ailment.

My one son nearly bled to death and nearly lost his spleen from a ski accident at 21 years and my other son had his gallbladder dissolve at 27 leaking poison throughout. I know what it is to worry about a child. Only entertain positive thoughts and try to stay focused on the end result. This can take you down or you will be stronger.

Keeping you in my thoughts.

Cheryl, Ontario

Dear Danny,
I'm sure you'll do just fine. You're young and that's good for you and your recovery. Uncle Joe and I will be there praying for you and your family. Stay strong. Love, Aunt Jackie :)

Hi Danny and Mom
You will be doing 500 push ups a day after recovery, you might even get that up to 600, but give it 4 or 5 weeks. Even in my best shap, I have not done 500 push ups total my whole life and I am 56 years old, you way ahead of the pack for recovery. You will be just fine, the technology in the OR is so amazing, I was not wanting them to knock me out until they explained all the equiptment to me. Really cool stuff. This is a awsome place for support. If you want a good grin check out my journal under "Thune" best of luck and whishing you calm seas.

happy boating
captain Bill

Dear Mary and Danny,

As all of us here know, getting ready for surgery is a very nerve-racking experience for the patient and for the family. I had an aortic replacement almost 6 weeks ago and I think in many ways it was harder on my husband and my mother than it was on me. (Mary, I'm 57 and my mother was a nervous wreck so don't feel ad about being scared . . . it's a mom's job!)

The good news is that it's really not that bad. Yes, it's major surgery and they're working on Danny's heart, but in many ways it's pretty mechanical and the results are great. There are very few problems related to this surgery. The success rate is EXTREMELY high.

I found the post-op experience to be far easier than I had imagined. Would I want to go through this every year? No. But it wasn't bad . . . and Danny is young so he'll probably bounce back quicker and easier than most of us. (There's a young man named Trevor - I forgot his last name - who had this surgery a month ago and he was out of the hospital faster than anyone else. You might want to find his journals and contact him.)

You've found a very supportive community here - feel free to ask us anything,

And good luck to Danny and your whole family.

Ricki Shine

Addendum to the previous note by me, did learn Mom's name is Mary!
Fran

Hi Danny and Mom
Mom, we really need to know your name! Can't really add anything to the great info my fellow heart valve patients have already given you. They are an amazing group of people. I learned last January that my valve surgery was scheduled for March 18th. Spent a lot of that time gathering information and getting wisdom from those who have gone before me. Where will your surgery be done? Do you know what kind of valve you'll have, tissue versus mechanical? Lots of decisions to be made and they may seem overwhelming but soon it will all be behind you, you will live a long healthy life making those 3 pointers and not having to worry about the unknown. keep us up to date and you are in my prayers for a successful surgery and recovery.
Fran

Welcome Danny & Mary. I wish you the best with your upcoming surgery. I will be having mine soon too (7/21). I hope you've had a chance to read Adam's book as it provides a lot of information on what to expect. Reading other journals here will also be helpful & everyone here is supportive & more than willing to answer your questions.

Take care, Joy Vera

Sorry that I forgot to put my name on the previous post.

Tim from Greensboro NC

Good luck on your surgery. I hope that everything goes well for you and your family.

I hade my aortic valve replaced at Duke on May 21 via minimally invasive surgery. I am now 5 weeks post-op and doing well all things considered. I started driving 2 weeks after surgery which was great.

For the family and caregivers, rest as much as you can especially now and while Danny is in the hospital. Your real work starts once Danny comes home. Let the nurses, doctors and tech do their job but don't be afraid to ask questions.

Please keep us up to date and we will keep you and your family in our thoughts and prayers.

Danny,

I wish you the best of luck as you prepare for your suregery in a few days. I had 40 years to prepare for my aortic valve replacement, which was done on May 5 of this year at the age of 49. I had my stenosis and regurgitation since birth, nad was being monitored for when it eventually began to fail.

I had 40 years of no change, and then last year there was dramatice change. The stenosis had worsened to xuch a degree, I had an anuerysm on my aortic root. When I had my valve replaced they also replaced the first 3.5 inches of my aortic artery.

As daunting as such surgery sounds, it is a very routine surgery in this day and age. My time in the hospital was realtively easy with only minor challenges. I think you will find as you read through journals, almost everyone has something out of the ordinary occur along the way; but we all seem to get through it just fine.

You will get through this as well. I think you will look back on this in two weeks and think it was not nearly as bad as you thought it was going to be. Your life will get back to normal, and soon you will be back to doing everything you have always been able to enjoy in life.

I wish you and your entire family the best of luck over the next few days.. Hang in there, it will be ok..

Mark

Keller, TX

Hi Danny and Mary,
I had mitral repair surgery in March 2010, and am now in cardio rehab. I was one of the lucky ones who recovered with no real setbacks. I am also the mother of a daughter who had heart surgery when she was almost two years old. She is now 23 years old and doing great. I can understand your feelings from both perspectives ...patient, and parent. I definitely think parent is the harder one. Please follow as many journals as you can...it will give you a better understanding of the surgery and recovery. Also, it will reinforce the fact that even with setbacks, everyone came through it and are now recovering.
Good luck,
Theresa Callanan

Hi Danny & Mary -

Thanks so much for your kind words. It is great to hear stories from everyone on this site because we all share the same goal in mind of fixing something we cannot control. The biggest thing that I have learned through this whole process is to have complete trust in your surgeon and bring with a ton of courage to the hospital. The numbers are on your side and you will be just fine. You are even younger than me and I can tell you that being young helps the recovery process. I spent 3 days in the hospital and I started cardiac rehab just 3 weeks after surgery. I will continue to check in on your status and keep you and your family in my prayers. Just remember to always stay strong! You will be just fine and when all is said and done you will be so much stronger physically and mentally. If you have any specific questions don't hesitate to contact me or anyone else on here, we're here to help! Take care Danny.

Trevor Nelson
Rockford, IL