Karrie Irby-Williams - Heart Valve Journal

My Journal

2644 days ago

We are 4 weeks out from Justin’s surgery and overall things are going very well. Spent New Years Eve at ER due to irregular heart beat from not taking his ...Read more

We are 4 weeks out from Justin’s surgery and overall things are going very well. Spent New Years Eve at ER due to irregular heart beat from not taking his metoprolol. I had to hold it from low BP when upper number was going below 100 and pulse was going high then low so I just needed to have him checked out! Got that straightened out but his test came back showing he is anemic. I’m not surprised but my concern is that they said his hemoglobin was 12 when he left the hospital and now it’s 9.6. They didn’t seem to think he had any bleeding going on due to signs and symptoms and other test results I guess.. he is very pale which has seemed to get worse not better.. ER Dr called the surgeon on call and said it’s pretty normal post surgery and he just needs to follow up with cardiologist , which isn’t for 2 weeks.. Echo and CTA result were good and he saw his surgeon for follow up earlier that day before ER visit. I have given him liver twice and he eats steak at least twice a week. Any experience with iron dropping AFTER surgery and suggestion to bring it up quick. I hate to give supplements yet his stomach has been bothering him and would like the Dr to advise which ones and dosage if needed.. They said if it drops to 7 they will need to do a transfusion. Kind of worried 😟

Jill Mullikin Ah heck. I was hoping you were quiet because you were busy celebrating the holidays with your family ... Read more

Jill Mullikin Ah heck. I was hoping you were quiet because you were busy celebrating the holidays with your family! Crazy how Justin and Bash’s hospital stays were so similar but they are definitely having different recoveries. Guess there is no one size fits all to this is there? Hang in there heart sister!

Karrie Irby-Williams Thank you !!!

Debbie Kelly My mother lost blood during her surgery, had to have transfusions, and was re-admitted a month later ... Read more

Debbie Kelly My mother lost blood during her surgery, had to have transfusions, and was re-admitted a month later to have more transfusions. Granted she was much older than your son, I understand it is something that is not uncommon. My mother ended up having to have shots for about a year before her blood count got to be 10, and stayed in that range until the day she passed. Try not to worry. It's all a part of the healing process for the body. If he is extremely tired, this may be the reason. Praying for "y'all".

Karrie Irby-Williams Thank you Debbie!

Debbie Kelly You are welcome, Karrie. I forgot to mention that one of the symptoms of a low hemoglobin count is s ... Read more

Debbie Kelly You are welcome, Karrie. I forgot to mention that one of the symptoms of a low hemoglobin count is shortness of breath. I had never heard of anything like that before. I thought my mom was, either, having an asthma attack or her new valve had failed.

Marie Myers Has he seen a gastrointestinal doc? Sometimes we can develope stomach ulcers from the stress of the s ... Read more

Marie Myers Has he seen a gastrointestinal doc? Sometimes we can develope stomach ulcers from the stress of the surgery, which can lead to anemia afterwards. Especially if you say his stomach has been bothering him. I would at least ask about that.

Thomas Brusstar The blood thinners can cause gastro-intestinal bleeding. The hemoglobin shouldn't be going down, I w ... Read more

Thomas Brusstar The blood thinners can cause gastro-intestinal bleeding. The hemoglobin shouldn't be going down, I wouldn't think, unless there's some internal bleeding. I would guess ulcers or other gastro bleeding is the most likely culprit, assuming blood thinners are being used. But my hemo after surgery was 9 and I felt very weak, and when it gradually climbed to 12 and then back to 16, I felt so much better. It shouldn't go down from 12 to 9.6 without a reason.

Karrie Irby-Williams Thank you all so much for responding!!! The nurse at the ER asked him about this stool being black a ... Read more

Karrie Irby-Williams Thank you all so much for responding!!! The nurse at the ER asked him about this stool being black and he thought it was but not sure and his stomach hurting was very minimal but became more of a concern to me after seeing his hemoglobin went down. He was on steroids which I read last night can also cause Gastro bleeding , he is on baby aspirin once a day. And has had only a few doses of Advil since coming home.. he’s off all other meds . He’s has cerebral palsy and doesn’t alway comunicate effectively . But today he said his poop looks better, so I perused that and I do think y’all may be right that he has some bleeding in his stomach.. should I take him back to ER?

Karrie Irby-Williams Update: called the surgeon on call and not goIng back to ER just yet... starting him on acid reducer ... Read more

Karrie Irby-Williams Update: called the surgeon on call and not goIng back to ER just yet... starting him on acid reducer tonIght

Dan Baltazor Good to hear. Hopefully this will resolve soon.

Karrie Irby-Williamsposted a journal

2666 days ago

1 person reacted to this

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 ...Read more

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 😳

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 c ... 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 ... 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 n ... Read more

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 b ... Read more

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, bu ... Read more

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 ... 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 no ... 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 o ... 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 ... 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 h ... 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 s ... 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,

Rosie Craig I am 7 months post op with aortic valve replacement and aortic aneurysm repair. I went through the sa ... Read more

Rosie Craig I am 7 months post op with aortic valve replacement and aortic aneurysm repair. I went through the same thing. My heart rate would go to 120 when I was sitting on the couch watching tv. I was taking my blood pressure way too much and then would get nervous. I also experienced very low bp and had to quit the lisinopril for a few weeks. Then it went high so they increased the metoprolol to 50 mg twice a day. My cardiologist said not to pay attention to the heart rate on the Fitbit as it is not consistent. Once I quit worrying about it and quit taking my bp so much, I feel better. It’s taking longer than I expected, but every day gets better and Justin will too. Hang in there, it takes time for the body to stabilize, but it will!!

Karrie Irby-Williamsposted a journal

2674 days ago

Dan Baltazor, Donghua Cai reacted to this

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

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 el ... Read more

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 ca ... Read more

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!

Karrie Irby-Williamsposted an update

2676 days ago

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 ...Read more

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?

Phyllis Petersen Maybe let him hang out (he needs the mental boost to get through this), but just keep a little distan ... Read more

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 happ ... Read more

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 kn ... Read more

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- ... Read more

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

Karrie Irby-Williamsposted a journal

2689 days ago

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 ...Read more

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 😯

Karen Warren Karrie, that is a pretty good blood pressure. I'm sure the anesthesiologist will know what to do for ... 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 yea ... 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 sur ... Read more

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 litt ... Read more

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 ... Read more

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 ... Read more

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 hi ... 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 ... 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 ... 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.

Karrie Irby-Williamsposted a journal

2689 days ago

Dan Baltazor, Molly Ivers reacted to this

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 ...Read more

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?

Susan Lynn Karrie - Surgery is every bit as traumatizing for our loved ones as it was for us. Everything you're ... 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 b ... 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 p ... 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 reas ... 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 thi ... 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 w ... 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 ... Read more

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.