Karrie Irby-Williams - Heart Valve Journal

My Journal

Post surgery HR

Journal posted on December 11, 2018

Justin is doing really well and we are at 8 Days post surgery! Only issue seems to be his Heart rate. He was sent home with BP meds Metoprolol 25mg (1/2 in am and 1/2 in pm) and once a day Lisinopril-5mg. His Bp has been too low twice and so I had to skip a few doses and call the Dr, nurse returned my call and said to stop lisinopril for now and Dr will call with further instructions in the morning ! I’m kind of freaked out, his pulse is erratic.. goes as low as 39 and up to 120’s while resting . Keeps going high and low but doesn’t stay there long! Hoping his heart is just trying to find it’s new normal. Someone mentioned there nurse calling it “chasing the pulse” but that was in the hospital right after surgery! I don’t know if will be able to sleep. Also I probably take his blood pressure too often, I’m getting on his nerves about now 😢 ANYONE EXPERIENCE SIMILAR.?

I must clarify I’m reading his hr from his iPhone wAtch and not sure it’s accurate, headed to store for Pulse/OX reader. Last reading on watch just went to 185 😳

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Lisa Guinan My HR was in the low 100s when I first got home from the hospital. I’m now in the low 90s. Im not currently on a beta blocker. I know it takes awhile for ... Read more

Lisa Guinan My HR was in the low 100s when I first got home from the hospital. I’m now in the low 90s. Im not currently on a beta blocker. I know it takes awhile for your heart to settle down after surgery, it doesn’t realize it doesn’t have to work as hard as it used to. I’m guessing his dr will wait and see what it’s like at your first follow up visit.

Dan Baltazor Lisa said it. Also, I'm on the Metoprolol, beta blocker, and that helps your heart have some control post op. For 4 weeks post op I was on 25mg but twice a ... Read more

Dan Baltazor Lisa said it. Also, I'm on the Metoprolol, beta blocker, and that helps your heart have some control post op. For 4 weeks post op I was on 25mg but twice a day. Looks like they are also having you do twice a day, but halving the pill. I had some heart beat issues but not as erratic as Justin's. Hopefully you get an accurate reading with the pulse/ox.

Jill Mullikin I hope things have calmed down today. Thinking of you both!!

Catie B Hope things are going better, Karrie!

Karrie Irby-Williams Heart seems to be fine today. Low bp this morning so no AM med given just gave PM dose. Only issue now seem to be he is VERY VERY irritable 😢

Karrie Irby-Williams Thanks for the kind words, feeling pretty emotional, the stress of it all seems to be getting to us both

Bob Santospago Most everyone who had valve replacement has told me the same ... high heart rate in the beginning, but under control in no time at all.

Adam Pick That was my experience too! High heart rate to start. Then, it slowed down.

Mark Bower As many have already stated, I too had the same experience. It took awhile to fine tune my meds and pacemaker to get my heart rate to a slower and more comfortable ... Read more

Mark Bower As many have already stated, I too had the same experience. It took awhile to fine tune my meds and pacemaker to get my heart rate to a slower and more comfortable rate. Now, even when exercising, my heart rate is more appropriate to whatever I'm doing at the time. Hang in there! Share as much as you can with your doctors even if you think it's minor details. The more they know the more they can help you. And for mom, kudos to being an active contributor to Justin's recovery. Family and friends make the world of difference in this journey.

Mark Bower Another quick thought, there have been articles on whether or not iPhone HR monitor is accurate or not. Their new version even states it's not for patients ... Read more

Mark Bower Another quick thought, there have been articles on whether or not iPhone HR monitor is accurate or not. Their new version even states it's not for patients with heart conditions. Having a blood pressure monitor that also records his HR is the best at home. He's still early in this journey and things will improve!

Julie Gerard My metoprolol was increased a couple different times because of high heart rate after surgery. Lots of people have said their’s starts to go down pretty quickly. ... Read more

Julie Gerard My metoprolol was increased a couple different times because of high heart rate after surgery. Lots of people have said their’s starts to go down pretty quickly. I’m 8 months post surgery, and my heart rate still is higher than before.

Richard King Hi Karrie, my resting was in the 100s initially, and stayed up in the 90s for several months. Did not go completely to normal for an entire year. I was on 100 ... Read more

Richard King Hi Karrie, my resting was in the 100s initially, and stayed up in the 90s for several months. Did not go completely to normal for an entire year. I was on 100 mg metaprolol to help with it until about 9 months, and the lowered to 50. My cardiologist still has me on it after about 15 months because I have no side effects. Now resting is down in high 50s. Hopefully Justin's will clear up sooner because he's a lot younger than me.

Betty Atwater After the repair of my mitral and tricuspid valves and a MAZE procedure for AFib, I was on a pretty high dose of metoprolol (100mg 2x/day - then reduced to ... Read more

Betty Atwater After the repair of my mitral and tricuspid valves and a MAZE procedure for AFib, I was on a pretty high dose of metoprolol (100mg 2x/day - then reduced to 50mg 2x/day). My heart rate was a pretty constant 115-125 for almost 2 months, even though I had a pacemaker/defibrillator implanted. However, it finally decreased to the mid-70s. I think it just took time for the heart to heal from the assault of the surgery.

Don Faust it takes time for everything to get back to normal, My heart rate was low 50's before surgery after surgery in the 80's each month it dropped in three months ... Read more

Don Faust it takes time for everything to get back to normal, My heart rate was low 50's before surgery after surgery in the 80's each month it dropped in three months in the low 60's bpm. also had the low bp problem metoprolol 25mg x 2 a day after first month doctor cut the dose in half by second month was taken off,

Here's my newest picture!

December 6, 2018 Like | Catie B, Susan Lynn, Lisa Guinan and 4 others like this

Doing much better !

Catie B Good to hear, Karrie!

Jill McDonald He looks great! Smooth sailing ahead!

Karen Warren Looking great, Justin. You will be home before you know it.

Susan Lynn Looking great!!! ❤

Dan Baltazor Great news!!

Barbara Wood Justin's looking great!

Rob Sparling Way to go Justin! Thumbs up for you and your superhero mom!

Jennifer McInerney Looking good

Karrie Irby-Williams Thanks y’all .. we came home yesterday and had a goodnight sleeping in our own beds😴😴😴 Thanks again , we couldn’t name it through without all the ... Read more

Karrie Irby-Williams Thanks y’all .. we came home yesterday and had a goodnight sleeping in our own beds😴😴😴 Thanks again , we couldn’t name it through without all the wonderful support we’ve received! So thankful for Adam and this website...

Here's my newest picture!

December 3, 2018 Like | Jill Mullikin, Dan Baltazor, Karen Warren and 9 others like this

In Recovery doing well ❤️🙏 Thank each and everyone of you for your kind and encouraging words!

MARIE PICUN One day at a time. May God have his hand on you for a healthy recovery. In Jesus name amen

Dan Baltazor It's over, now on to recovery!!!!

Jill Mullikin His hat made me smile!

Karrie Irby-Williams Thank you Lord Jesus 🙏❤️

Marie Myers Welcome to the recovery side!

Rosemary Bobicz Creutz Wishing you a smooth road to recovery!

Ash Patton Wishing you a speedy recovery mate, love the hat 👌👌👌

Susan Lynn Speedy recovery! ❤

Louanna Miller Praying for good pain management and an easy recovery. This is a big big surgery and takes time to recover. I’m 3 months out and just now starting to feel good and not so tired.

Catie B Awesome!

Karrie Irby-Williams Thank you all so much!’!!!! He’s doing really well this morning. His heart is responding good to surgery .

Dan Baltazor Good news, Thanks for the update.

Kim Carpenter You are both in my prayers! I’m so glad surgery is over for you ! Welcome to our special warrior club! Now concentrate on a speedy recovery! It sounds like he’s got a great mom to take care of him!!!

Rob Sparling Way to go! 👍 A warm welcome to the recovery side!

Here's my newest picture!

December 3, 2018 Like | Susan Lynn, Dan Baltazor, Rob Sparling likes this

He was so brave going into surgery

Jill Mullikin ❤️❤️❤️. We can now never be any less brave than our sons were!!

Karrie Irby-Williams Surgery is over all went well! ROSS procedure was done 5 hours total. Dr said his valve was tricuspid and very thick. Mitral valve is thickened and needs to ... Read more

Karrie Irby-Williams Surgery is over all went well! ROSS procedure was done 5 hours total. Dr said his valve was tricuspid and very thick. Mitral valve is thickened and needs to be watched but not leaking. Waiting to see him in ICU once he is more stable

Karrie Irby-Williams Jill!!! So True.....💪

Susan Lynn Great news, Karrie! ❤

In surgery now!

Journal posted on December 3, 2018

Justin’s surgery started at 8:30. On bypass since 9:10. Had to do the ROSS procedure, valve couldn’t be repaired.

Like | Dan Baltazor, Donghua Cai likes this

Debbie Kelly We are all here for you, Karrie. Sending prayers and hugs for a successful surgery.

Karen Warren Prayers your way.

Dan Baltazor 🙏

Jennifer McInerney Hope all goes well

Karrie Irby-Williams On bypass for 3 1/2 hours starting to get worried about that.. I read 4 hours is the limit anyone else on that long

Karrie Irby-Williams Thanks for prayers

Dan Baltazor Don’t worry! Trust the team.

Dan Baltazor It’s tough being in the waiting room, He’s got this- Stephanie

Dan Vechiola Think positive and visualize a successful surgery and hospital stay.

Susan Lynn Keeping you both in my prayers! Please keep us posted on Justin's progress. Don't forget to take care of yourself, too!

Update posted on...

December 1, 2018

2 days until surgery and I kind of have Justin in isolation. I have been almost neurotic about avoiding illness in our household the last several weeks. We have carried on as usual , with the exception of constant reminders from me to wash your hands and disinfecting everything possible 😃 until today. I’m concerned mainly due to increase in illness and flu this time of year. I actually discussed moving his surgery until after flu season but his surgeon wasn’t concerned.

Justin understands but he is frustrated and I do feel bad if I dont let him hang out with friends or family this weekend before his surgery! Any thoughts?

Like |

Phyllis Petersen Maybe let him hang out (he needs the mental boost to get through this), but just keep a little distance if possible, or at least no runny noses allowed. It'll probably make you both feel better.

Karrie Irby-Williams Thanks Phyllis .. we have a small gathering planned and very upfront about Illness.. he’s very happy about his friends coming to see him

Rita Savelis Having been ill as a teenager (cancer), I do think it's important that parents stay relaxed. But I know it's hard. Take care.

Phyllis Petersen On the plus side, younger people can share a lot over the computer, but there's nothing like face-to-face.

Low BP

Journal posted on November 18, 2018

Has anyone had low blood pressure prior to surgery? Justin has always had low BP and pulse. Last Dr visit it was 108/ 68 Hr 60.
We will discuss this with surgeon at next visit which is Nov 28 , just prior to surgery. I know it’s good over all for the valve, but concerned about surgery and if meds were needed for rhythm purposes. I don’t think he can take a beta or calcium channel blocker with bp that low. Surgeon just said last time low is good but wished it wasn’t quite that low and planning on using NO meds before or after surgery 😯

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Karen Warren Karrie, that is a pretty good blood pressure. I'm sure the anesthesiologist will know what to do for Justin's procedures. I kept a journal prior to my surgery ... Read more

Karen Warren Karrie, that is a pretty good blood pressure. I'm sure the anesthesiologist will know what to do for Justin's procedures. I kept a journal prior to my surgery and jotted down all my questions and thoughts. It is hard for a mother to watch a child prepare for surgery. I do believe it may be harder on parentals. Young men snap back so quick. I will be keeping you and Justin in my prayers.

Don Faust that's good blood pressure, theres nothing to be worried about

Karrie Irby-Williams Thank you both so much! I will rest a bit easier tonight

Catie B That's a very nice blood pressure, Karrie. Mine runs lower than that most of the time and has for years. And I'm currently taking a small dose of metoprolol ... Read more

Catie B That's a very nice blood pressure, Karrie. Mine runs lower than that most of the time and has for years. And I'm currently taking a small dose of metoprolol for palpitations, which lowers it a bit further still. It would become worrisome, if he were to get dizzy or have other symptoms from it being low.

Karrie Irby-Williams Thanks Catie , it really helps knowing it’s not such s concern.. yours was low before and after surgery?

Catie B BP was on the low side for years, is still low now, two years after. My resting heart rate is a little lower since the surgery.

Marie Myers Your BP will be monitored with an arterial line constantly during surgery and immediate recovery, and anesthesia has plenty of Meds to raise your BP if need be.

Jennifer Jacobs I'm glad you asked that Karrie Irby-Williams. My blood pressure is low. I went last week to the drs and it was 87/65. I have been concerned about it being low and having surgery.

Rita Savelis I have always had low blood pressure - before and after surgery. No problem. (So much better than high blood pressure!!) If your son takes betablockers (to ... Read more

Rita Savelis I have always had low blood pressure - before and after surgery. No problem. (So much better than high blood pressure!!) If your son takes betablockers (to give his heart a rest after surgery) he will probably be on a low dose and monitored so his blood pressure is not too low. I took betablockers but got off them as soon as I could.

Karrie Irby-Williams Thank you al for your feedback.. it helps more than you know 🙂 I also heard since this post that a pacemaker is sometimes used to keep up the heart rate ... Read more

Karrie Irby-Williams Thank you al for your feedback.. it helps more than you know 🙂 I also heard since this post that a pacemaker is sometimes used to keep up the heart rate .. even sometime external one temporarily....and a friend of mine said her dad had to take a medication for a while to raise his bp for a short time . ❤️ Jennifer Jacobs 🙂

Rita Savelis Almost every patient will have an external pacemaker after surgery if only for a few days, until it's certain the heart has gotten its proper rhythm back. A ... Read more

Rita Savelis Almost every patient will have an external pacemaker after surgery if only for a few days, until it's certain the heart has gotten its proper rhythm back. A small percentage (3%), me included, will get a permanent pacemaker installed at some point. But this has nothing to do with blood pressure and everything to do with one's heart's "electrical lines" being disturbed by surgery. Take care.

Upcoming Surgery

Journal posted on November 18, 2018

I knows it’s my son having surgery not me but due to his disability I carry the burden of making these decisions for him . Getting close to his surgery date and it feels like we’re about to sky diving and I don’t know if I can jump, or waiting in line for a roller coaster and when it’s your turn,, “I don’t wanna get on”. I don’t feel prepared. His doctor said he could wait a year and he’s astmptomatic, but waiting is stressful and our insurance deductible is met, just hoping we have made the right decision. Is second guessing everything pretty normal?

Like | Dan Baltazor, Molly Ivers likes this

Susan Lynn Karrie - Surgery is every bit as traumatizing for our loved ones as it was for us. Everything you're feeling is normal. Don't second guess your decision ... Read more

Susan Lynn Karrie - Surgery is every bit as traumatizing for our loved ones as it was for us. Everything you're feeling is normal. Don't second guess your decision - our conditions don't get better on their own, in fact waiting is wrought with all kinds of risks. You've done your research, you've picked the surgeon and team you trust. Now, it's time to leave the treatment to them. You will be tasked with staying positive and keeping your son's recovery on track. You can both do this! ❤

Karrie Irby-Williams I know you are right! THANK YOU

Rob Sparling I’ve often thought of this journey as a combination of skydiving and going over Niagra Falls in a barrel. Oh, and the roller coaster, too! So pretty normal ... Read more

Rob Sparling I’ve often thought of this journey as a combination of skydiving and going over Niagra Falls in a barrel. Oh, and the roller coaster, too! So pretty normal feelings, for sure.

Susan said it.. We don’t improve on our own. We get worse. The slope can get very slippery (and quickly). The power of premeditating and selecting the team is a huge advantage in my opinion over the alternative of having to do something urgently with a team you didn’t hand pick at a time when you both aren’t ready for it. So do everything in your power and then make sure they do the same (they will) and stay positive. It helps the outcome!

As far as waiting, a one year delay doesn’t buy a lot. It stretches out the timeline but it does bring more (some amount? moderate? small? nobody can tell you) risk over those next 12 (?) months. That trade-off is a personal choice and is so tough. I could have delayed but I chose to go through because I could not handle the uncertainty and the constant worry.

Louanna Miller Karrie, you are not alone in the waiting. It is so stressful for family members. Allow yourself to process your own emotions about your son’s surgery. Then ... Read more

Louanna Miller Karrie, you are not alone in the waiting. It is so stressful for family members. Allow yourself to process your own emotions about your son’s surgery. Then you will be able to feel stronger.

I think having the surgery sooner is best as his heart won’t continue to work hard or harder as the valve deteriorates. Will pray for strength and peace for you in the days ahead.

Karrie Irby-Williams Thank you Ron and Louanna ( love your name 🙂) I feel like I know it’s time, just needed the reassurance from those that have been through the same thing! ... Read more

Karrie Irby-Williams Thank you Ron and Louanna ( love your name 🙂) I feel like I know it’s time, just needed the reassurance from those that have been through the same thing! Thank you so much for taking the time to respond and give your support! I can’t imagine doing this without this group

Rita Savelis Yes. Second guessing is normal. Anxiety is normal. It's all hard... and then you move forward and things fall into place. The decisions you make are the right ... Read more

Rita Savelis Yes. Second guessing is normal. Anxiety is normal. It's all hard... and then you move forward and things fall into place. The decisions you make are the right ones for you. There are no hard and fast rules which is why your doctor says it's okay to wait as well. One is never really prepared, one just has to give up control and flow into it. Wishing you the best. I'm sure this is much harder for you than for your son. It's hard to be a caregiver and to see your child go through hard things. Take care.

Karrie Irby-Williams Thanks so much Rita!!! I just said this today, I don’t think your ever ready ready because nobody wants to go through this, I think we are as ready as we ... Read more

Karrie Irby-Williams Thanks so much Rita!!! I just said this today, I don’t think your ever ready ready because nobody wants to go through this, I think we are as ready as we can get 🙂and Thankful to have the doctors that can fix it ! Thankful for all the support here as well 😀

Molly Ivers Yes, second guessing is normal, but you are making the right decision. Do it now that your insurance deductible has been reached - his quality of life will be so much better in the long run.

Here's my newest picture!

November 14, 2018 Like | Susan Lynn, Adrianne Lane, Shannon Gray and 2 others like this

My son. Scheduled for surgery December 6

Paul Howarth funny i have my Hurley shirt on today at work. i didn't feel like getting dressed up. were all here to help in any way we can. you guys are not alone in this. ... Read more

Paul Howarth funny i have my Hurley shirt on today at work. i didn't feel like getting dressed up. were all here to help in any way we can. you guys are not alone in this. its heart warming to hear from everyone. will pray for your son.

Karrie Irby-Williams Thank you Paul that means so much

Rob Sparling This is the place, Kerrie. Glad you both found us!

Catie B Welcome, Karrie! Dr. Ryan is a real expert!

Karrie Irby-Williams 🙂 Me too Rob

Karrie Irby-Williams Thanks Catie! Have you seen Dr Ryan before?

Susan Lynn Beautiful smile! You'll both get through this and we'll be there with you every step of the way. All the best!

Jill McDonald I can't say enough about this site! Hope you find the answers and support with this fantastic forum!

Karrie Irby-Williams Thank you Jill and Susan!

Catie B Karrie, yes, I did. He was very down-to-earth, personality-wise and I think very highly of him. When I asked whether he repaired many aortic roots, he replied that he'd done three in the last week!

Jill Mullikin Hi Karrie and Justin! My son who just turned 20 had bicuspid aortic valve and aneurysm repair 8 weeks ago and is doing very very well. We had a few really ... Read more

Jill Mullikin Hi Karrie and Justin! My son who just turned 20 had bicuspid aortic valve and aneurysm repair 8 weeks ago and is doing very very well. We had a few really rough days right after the surgery but he got through. He didn’t have any complications but the younger fellas seem to have more pain from the drainage tubes. Their healing powers are quite remarkable but their muscle mass increases the pain factor. Encourage the spirometer and walking to clear his lungs as quickly as possible to get those drains out because it changes everything! I’ll be following and rooting for you both!!!

MARIE PICUN Welcome to our family . Here you will get the support from our sisters and brothers the heart warriors

Civita Fahey My prayers that all goes well. he is young and healthy and he will do great.. a year from now he wont remember that he had surgery except for the scar.. God Bless

LINDA ROBERTS Very handsome son. I know he will do great with his surgery.

Karrie Irby-Williams Hi Jill! Thanks so much for your tips and feedback! I actually saw your update post on your son earlier this week and I shared it with Justin. His story is ... Read more

Karrie Irby-Williams Hi Jill! Thanks so much for your tips and feedback! I actually saw your update post on your son earlier this week and I shared it with Justin. His story is similar in many ways. Justin has gone through days of denying he needs surgery and wondering why everything happens to him (his words) I showed him your son and explained that he is not alone and he can do this! Thanks for you kind words and support. It means a lot

Jill Mullikin Your son is absolutely not alone! For his age group he is a minority for sure but there are others. I wish both our boys could have been “special” in ... Read more

Jill Mullikin Your son is absolutely not alone! For his age group he is a minority for sure but there are others. I wish both our boys could have been “special” in some other way but unfortunately it’s the hand they were dealt. Fortunately it’s all very fixable and was found before something irreparable happened. My son had never been hospitalized so this was quite an experience for us all. Everyone that has had these surgeries has moved mountains and I was just a humble plow driver clearing the way. Your son has more courage than he thinks he does and the will to live a longer healthier life outweighs the fear. I’m here for you both and found the friendship on this site immeasurably helpful for my own sanity.

Karrie Irby-Williams Thank you everyone... Marie Civita, Linda... THANK YOU

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