Trevor's Heart Valve Journal

Jay S. posted a note for Trevor that says: Hi Trevor,

I hope you’re doing. I am also going to have a valve replacement in the next few weeks by Dr. De Oliveira at UW-Madison. I’ve thoroughly enjoyed reading your posts. Curious if you have any additional suggestions before my big day.

Thank you,
Jay

glasswall posted a note for Trevor that says: Hi trevor i had open heart surgery 3-4 years ago not an easy thing for someone young.now 28 years email me charlieglasswall@gmail.com

Trevor,

This is such a great way to share your experiences and help others going through similar experiences. Thanks for sharing!

;o) Kim

Trevor,
I am in the process of deciding what type of Valve, mechanical or bovine. I am 51 years old. Surgery is on 28th of December. Think I am going with Bovine.

Any comments?

jack

Hi Trevor, I'm glad to hear your doing so well. It's encouraging for me, since I go in for the replacement in 2 or 3 weeks. Can you tell me why you got a tissue valve? Most of what I hear is, if your under 60 y.o., they use artificial. I have to make that decision VERY soon. I'm 57 y.o.
Art

Hi Trevor,
I hope your recovery continues to go well. This is Mary, the mother of the 19 year old, Danny, who had AVR replacement surgery on 7/1. He is doing well. I just have a few questions for you since you are closest in age to Dan. Did you experience some pain in your neck, shoulders and arms around 1 1/2 to 2 weeks post op? Additionally, what was your walking regimen like at this point. I know you started the re-hab at 3 wks. and I was wondering what your thoughts are on that. Do you continue to go? Dan seems reluctant to go but I know he LOVES to exercise and it would afford him the opportunity to built up his strength safely. Could you give me an idea of some of the exercises he could do safely at home? I know you are a busy young man so when ever you can get back to me is fine. Dan starts back to college on 9/7. I'm glad he has several more weeks to recover before then. I'm praying for your continue successful recovery and all your family. I know it is hard on everyone when a family member goes through such a difficult surgery. By the way, my daughter, Aimee, is a cardiac registered nurse. Good luck to you in your schooling. Mary James

Great progress, Trevor! When you get the okay, start Cardiac Rehab. It is the best for lifting our spirits. You are definitely going to be the youngest but please don't let the "older" cardia patients discourage you. I am 63 and most everyone else was married before I was born. They tease me lots so I can't imagine how they will rib you. Keep your smile as it is contagious. Sincerely, Ann Garcia - mechanical mitral valve survivor.

Hey Trevor! Thanks for posting on my guestbook. Great to hear from you! Yeah, it was an awesome trip! I hope your trip to AZ is great! I bought a Timex T5H891 heart rate monitor watch (55.95 at amazon.com). Yes, it does have a strap, which is a bit annoying, but I'm getting used to it. I'm really glad I have it. You, my friend, are having a great and inspiring recovery. Praise to God!! Your age and fitness don't hurt you any; I've got almost 30 years on you. You are a year younger than my youngest kid. It's way cool that Adam featured you on his latest blog update. Great pic! Keep on trucking!

Duane

Reply from Trevor to the last message (Tristan's mom) -

Sorry I had to put a response on here but I couldn't find Tristan's journal (I'd REALLY suggest he join its so informative and fun!). The answer to your first question is simply because I myself chose the bovine pericardial aortic valve. From my initial meeting with my surgeon, he emphasized that I would be in control of the major decisions because I was ultimately the one who had to live with the choice. With that said, he educated me extensively on every decision and weighed out pro's and con's of the choice. I should also mention that I had a whole year to decide. I ultimately made the decision because I did not want to go on Coumadin.

In regard to Tristan's brothers - their primary physician's should be able to pick up on any cardiac changes. I was like Tristan in a way because my bicuspid valve was not found until I was 12. None of my brothers have the condition I have, and actually no one in my whole family tree has had it. Hope this helps!

Hi Trevor, My Son Tristan had heart valve replacement surgery & the Maze Procedure done last November, 1 mo. before he turned 19. He also had Bicuspid Aortic Valve like you, and he had gone into A-Fib twice (Maze Procedure is supposed to stop that from happening again). Tristan's Surgeon told him NOT to get a Bovine valve because it would have to be replaced too soon, and to get the On-X mechanical valve instead, even though that means taking blood thinner meds. So I was wondering why your Surgeon put a bovine valve in you instead of a Mechanical valve. Tristan's Surgeon said he was too young to have a Bovine valve, because he didn't want to have another surgery so soon afterwards. There is an FDA study going on concerning the On-X mechanical valve and Tristan might be able to go off of Warfarin when the study is completed and take Plavix or aspirin instead. One other question, I also have 2 older Sons, aged 22 & 29, and they are worried that they might also have Bicuspid Aortic valve since it's a Congenital condition. Do any of your 3 older Brothers also have it? My Sons don't want to pay a big insurance deductible to be tested, and they have never had any symptoms of heart problems. But we never found out about Tristan's heart condition until he was 17 and went into A-Fib and almost died! Up until then, no Dr. had ever noticed that Tristan had Bicuspid Aortic valve. His valve went from slightly leaking to severely leaking in 1 1/2 yrs. That is so cool that your Surgeon took pics of your valve & the new valve during your heart surgery. Tristan's surgeon didn't want to take any when Tristan requested them. He recovered so fast, as it seems you are too, and I think it's because youth is on your side. My prayers are with you in your continued recovery. I think you should look up Tristan Claflin on Facebook and send him a message. You 2 have so much in common. You can also look at his pics on Facebook of his chest right after surgery in November. Tristan's surgery was at St. Francis Hospital in Peoria, and we live in a small town just South of Decatur, Il.

Trevor,

Congrats on your great progress... It is wonderful to hear how well you are doing just a month later. Celebrated eight weeks myself this week, and life is pretty much back to normal. I will test my sternotomy on the golf course on Monday to see how that holds up.. Hoping and expecting it does well..

I am in your neck of the woods next week travelling from Chicago to Janesville on business Tues/Wed. Don't often have a chance to meet and say hello to HVJ'ers, but if you would like to grab a soda drop me a note and we can compare battle stories..

My best on your continued progress,

Mark
mark.long@walls.com

Keller, TX

Hi Trev,
Thanks for the update-- it's great that you're doing so well! It's amazing to think how smoothly you've sailed through. (I'm sure it didn't always seem that smooth, but to think that you had your chest cracked just a month ago... amazing!)
Marit

Happy 4th, Trevor
You are the poster person for an excellent valve surgery and recovery. You set a pretty high standard for others to follow. You can now look forward to so many healthy years of life and am sure you'll enjoy them. Thanks for sharing your journey with us.
Fran

Hi Trevor,

Great news. So glad to hear you are doing so well.

Happy 4th.

Elaine

We are so thankful your appointment went well! You look more energetic every time we see you! We pray your recovery continues this strong-your brother wants you back next summer, ha ha!

Love,

Troy, Jessica, and Madilyn

Hi Trevor. I've been following your journal, & wanted to wish you a continuation of your great recovery. It is very cool that your surgeon gave you those photos & even cooler that they'll be showcased in his lectures. Your journal & your recovery is an inspiration to others.

Take care, Joy Vera

Hi Trevor

After my mitral valve surgery last Oct/09 I still have PVC'S, missed, double and triple heart beats so now I'm on a Beta Blocker which seems to control them. The doctor says they are benign and for me not to worry so I don't.

You are having an amazing recovery. Good for you. Happy 4th of July

Cheryl, Ontario

hi bro.hope you are doing.i recentlly found out that i have to do open heart surgey to fix my mitral valve.am not scare but really mess up.yesterday my girlfriend had a miss carrage and that really put a lot of strain on my heart.am feeling down now just because of that but i no that it is just the cycle of life.am wondering if after surgey if i can still do my job,i do welding for my trade and sometime i have to liff heavy stuff,link me up bro,ok,looking foword to here from you.truckers63jm@yahoo.com

Hi Trevor,
Thank you for responding so quickly to my entry. I'm sorry I'm not very techo savy and didn't realize there was another page of entries in my journal or I would have thanked you personally, too. So many kind and caring people out there. You are obviously a very special young man and I think Danny will be able to relate to you especially, since you are so close in age. He will be turning 20 on July 22. Continued prayers for your good health. Pray for Danny on Thursday morning. Thanks Mary

Hi Trevor,
I'm glad to hear you are doing so well and my prayers are for your continued improvement. My 19 year old son, Danny, is having open heart surgery on July 1, 2010. You are the first person I have read about in these journals nearest his age. Your story encourages me greatly. He shares a love of basketball with you. God bless you and your family during this healing process.
Mary James

Hey Trev!
I've been checking in every day-- glad to hear it's going well!
Marit

Hi Trevor

You are sounding really great. Give it another couple of weeks and you'll be much more mobile and really able to enjoy your summer as you heal. I'm glad it's over for you as you can now look forward to a very full life.

Cheryl, Ontario

Trevor,

Perhaps you should change to pork chops! Glad to hear that things are going well. Keep at it.

By the way, the Iowa Cubs lost last night 16 to 12. They could have used some of those runs when we went to the game.

Take care,

Bruce

Great to hear all the good news Trevor!

Keep on tickin!

Adam Pick

Trevor,

Can we have an update? Would love to hear how rehab is going and how you are feeling. I won't bug you anymore, just wondering :) And, have you slept in a bed yet??

Amanda F

Hi, Trevor. You are a little ahead of me. My surgery was June 9th. KUDOS to you for taking the cardiac rehab classes!! I think that is a very smart choice, and I commend you on your positive attitude!
Shannon Smith

Hi Trevor

Still think you are pretty amazing. Praying for your continued speedy healing. Glad to hear you are going to try rehab because it will make you feel so much more confident in your abilities right now. Good luck.

Cheryl, Ontario

PS
I do remember having to help my dad, for quite a while, sit up after sleeping. Just do what is most comfortable.
Jodi

Hi Trevor,
I'm so glad to hear that things are going well for you. God is good!!!
I think my dad, after his surgery, slept in a bed but maybe this was little different than yours. If you want, I can check with him.
I know you will do great with the rehab. My dad really enjoyed going and said that it helped so much--he also enjoyed meeting others that had gone through the same thing. He just joined Peak and goes nearly every day in addition to golf (he took us on a tour the other day and at 83 he is clearly the oldest one there ha) but we're proud of him and of you.
Thanks for posting
Jodi

Hi Trevor!

Glad to hear you are doing well! I am 3 1/2 weeks post op and still in a recliner, mainly because it's too hard to get in and out of bed. I have tried a couple of times and once I am laying in the bed the pain is gone, just getting up and down makes it hard. Remember everyone is different and do whatever it takes to make YOU comfortable. I will continue to pray for your recovery!

Melany, NC

Hi Trevor!

Praise God for how well you've been doing! I think you will really enjoy cardiac rehab. Laughably (compared to you), I am the youngest person I have seen in the program at our hospital, and I'm 51. Because of my history of exercise and fitness, I wondered if I would be bored with it. No. Because each individual goes at his or her own pace, they eventually push you as hard as you want to be pushed. I say eventually because it took several sessions before they would push me. But for me, eager to get back to where I was, I would not have had the confidence on my own to push as hard as I am now, without the monitoring. So it's been great.

Before my surgery we bought a recliner since we didn't have one. I ended up in the hospital for 13 days due to my complicated journey, but day one home from the hospital, I slept in my own bed with my wife at night. I only used the recliner throughout the day. For me that helped separate day from sleep. But this is a highly individual thing. Lying flat does put more pressure on the incision than the support of a recliner. So it's nothing to be concerned about. Many patients stay in recliners at night for a long time. Just do what you feel ready to do. Your progress is amazing!

Prayers for a continued smooth recovery, and enjoy getting your butt kicked at rehab!

Duane in FL

Hey Trev--so glad to hear things are going so well--Ashley, my niece, never slept in a recliner she propped herself up with pillows and gradually lowered the height so that she remained comfy but she also was in the hospital for a full week after surgery .. Take it easy! Keeping you in our prayers!

Hi Trevor,

So excited for you that you get to start cardiac rehab. I was just wondering when I get to start. They gave me my orders but I forgot to ask when I should go. I was too worried about getting out of the hospital to worry about the details. I love that they are going to work your buns and not put you in a slacker class. I know you are a young-in' and probably have more of a social life than most of your elders here, but I hope you keep posting about your progress because it really helps those of us who are behind you.

I'm sleeping in my recliner, of course, and was wondering when people move to the bed, also. There is a bed right by my recliner but it makes me nervous even to watch people come in and lie back when they hang out with me. Then I remember that not everybody has a scar down their chest and lying back is painless.

Be patient with yourself, Trevor, and keep getting better. You are my inspiration!! Even though I could be your mother :|

Amanda

Glad to hear that you're doing well, Trevor! We're all thinking of you and sending our best wishes and prayers that you'll continue to recover steadily.
love,
Marit

Hey Trevor,
This is David, just wanted to congratulate you on how well things are going so far. Kimberly is still in pain, but I know that won't last too much longer. She does seem to be having a bit of hand-eye coordination problem, and she has been reluctant to get on the computer too much.
Anyway, just know that your in our our thoughts and prayers.

Kimberly and David

Hi Trevor
Great news. Glad you got rid of all that fluid so quickly. you'll feel better. I know everyone will tell you not to overdo. Just keep plugging along a day at a time.
Fran Z

PTL that you are doing so well! We continue to pray for you - for patience and a good appetite! Take care and enjoy the sunshine!
Mark & Nancy

Hi Trevor

From your journal posting it sounds as if you are well on the mend. I think Patrick will be following your recovery as he can probably more identify with your age so take care, you are a role model.

Are you using your spirometer regularly? Just a reminder.

Glad for you it is all over. I hope you are being a good patient.

Cheryl, Ontario

Trevor-glad to hear things went well at Madison! Hang in there and continue to take it slow as frustrating as that might be! Keeping you in our prayers! Deb Rinaldi and family

Hang in there Trevor,

Every day gets to be a little bit easier than the day before.

Mark
Keller, TX

Trevor, We are thrilled to read of your progress! God is so good!!! We are continuing to keep you in our prayers as you get stronger and continue with your rehab.
The Ford Family

So good to hear that you made it home. Yes, the first couple of days after surgery are rough--especially if the pain meds are not working. I had my vavle replaced on 5/21 at Duke and it does get better.

Take your time--and pain meds--and everyday you will feel a little better. In a few weeks, it will all be a distant memory.

Tim from Greensboro NC

Awesome news Trevor! So glad to hear you are back in the comforts of your own home--don't overdue! Take care and God Bless!
Deb Rinaldi

Hi Trevor

So far you are having an amazing recovery but don't get caught off-guard in expecting too much from yourself. While you have to struggle to challenge yourself each day, know when you are challenging as opposed to expecting too much or just not doing enough. Common sense is the rule. We are all anxious to get things back to normal but as you've seen, we've paid a price for trying too much too soon. Slow and steady. I still cannot believe you are home so quickly. You have had many prayers answered and the rest will come in good time. God Bless.

Cheryl, Ontario

Hi Trevor
In spite of all the pain, etc., you got out of there quickly, didn't you? What are you taking for pain now that you're home? Duane's advice is excellent, he's the pro. You cannot rush anything and if you try too hard, your body will tell you. Every good thing in time. Continue to heal and all this (and the memories of pain) will be behind you as your memory will dull with the negative events.
Fran Z

Trevor,

I am so glad to hear you in such good spirits so soon after surgery. You are my inspiration. I hope my own surgery goes as smoothly and is as uneventful as yours. Godspeed.

Grace & Peace,
Kellie (MD)

Trevor,

Great to hear from you first person! Awesome! Praise God! Welcome home! You are doing great! Some unsolicited advice from me: Use your heart pillow! Don't expect every single day to be better than the one before, nor be discouraged if it's not; there are ups and downs; it's okay as long as the general motion is upward. Don't overdo, like you will be tempted to be. May you continue to have a remarkable, routine, and uneventful recovery. My prayers are with you. God bless!

Duane Hunt, FL

Hope you had a good trip home! You all must be exhausted, but it's great to think of Trevor recovering at home. Lots of love to everyone.
Marit

Happy Birthday Sherry!
and happy homecoming to Trevor! I have learned a lot about the heart and surgery. We will continue to pray for Trevor's full recovery. Ace and Gwen

Hi Sherry

That was awfully quick but sometimes it's easier to recover where it's at least quiet and familiar. Good luck on the drive home. Good luck with Trevor. Keep him walking and coughing.

Cheryl, Ontario